The Autistic Me

Dieting by iPhone

2012-01-24T08:00:00.000-08:00

My wife and I are trying to learn a bit more about our diets. Information is a good thing. We each downloaded and installed the iPhone App from MyFitnessPal.

The app is at: http://www.myfitnesspal.com/

I'm not good with the entire idea of dieting. I'm not going to stop eating chocolate, bread, or pasta. Low carb? Nope. And I love beef, chicken, and fish. Since I'm not going to change the "what" of my diet, I might as well monitor the "how much" to see how far over my ideal caloric intake I might be.

The iPhone makes keeping the diary of our meals easy. If this helps me lose five to ten pounds, I'll be sure to let people know.

Nearly Empty Restaurants

2012-01-23T09:19:00.000-08:00

I love food. I like many restaurants. But, I really dislike crowds. The best restaurant is often a crowded one, so how do I get around this problem?

Generally, I don't go to lunch at noon and I don't dine at six. When we lived in Minneapolis, I learned to visit my favorite lunch spot at 11:30. Great service, fresh food, and twice the executive chef joined me to chat.

In our new community, I've learned that my favorite place is great to visit at 1 p.m. for lunch. The lunch crowd seems to vanish magically right as the lunch hour ends. I've been the only diner several times. I've accidentally arrived too early and found every table occupied.

Empty is ideal.

There are some good places that are intolerable at most times. I know it's not "great food" in a technical sense, but I like Joe's Crab Shack. However, it's annoying at almost any hour unless you can eat outside on the patio. I love seafood, I hate the theatrics. My wife and I end up eating on the patio or in the "back area" of Joe's.

I adored a steakhouse, the Twin City Grill, which is located in the Mall of America. In the midst of the crowds and noise is a dimly lit, old-style steakhouse. There's no loud music. The patrons do not scream above some artificial noise. I miss it.

There are quiet spaces with great food. I hope to find them here in Western Pennsylvania.

What if you aren't autistic anymore?

2012-01-20T11:11:00.000-08:00

What if you aren't autistic anymore?

The question was asked by a friend who had read the latest stories on the DSM-V and the criteria changes for autism spectrum disorders. See this New York Times article:

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html

I've written a great deal about defining autism so you might assume I care a great deal, personally. But, as I have written several times, "autistic" to me is a description of some traits but not the entire me.

My doctoral thesis included a long section on definitions of autism and the challenges of labels. My Ph.D does include the word "rhetoric" and a part of me does ponder the nature of labels. But, caring intellectually is not the same as passionately identifying with a label.

Autism is a definitional issue.

1980: DSM-III adds "autism"
1989: First criteria for Asperger's published
1991: IDEA adds autism category to K-12 special education codes
1994: DSM-IV error expands autism ("and" becomes "or" in criteria)
2000: DSM-IV-TR corrects 1994 edition
2004: IDEA revised, slows increase in cases
2012: DSM-V to be finalized, December 2012 (narrower criteria, in theory)

No one, at least not to my knowledge, labeled me "autistic" before 2006. Though my blog is The Austic Me, it was created during a class project and the name was not my first choice. I was going to use "Inklings of..." but there were many "inklings" on Blogger. Using the autism label was a statement, yes, but also a question of sorts. What is the "autistic me" if I'm still the person I was before the label?

I keep intending to update my IDEA/OSEP data spreadsheet, which would illustrate a slower increase in diagnoses, but still an increase. What would help is to overlap this with a percentage change chart, since population grew markedly from 1995 to 2005. Population growth has slowed during the economic slump since 2007, though we continue to grow in the South and West as a nation.

The basic point remains: adding Asperger's Syndrome, broadening diagnostic criteria ("or" is far more inclusive than "and" in a checklist), and a new generation of diagnosticians/clinicians better trained to diagnose autism has expanded the numbers in a significant way. This does not mean all increases are the result of definitions and awareness, but these changes contribute.

An example is that "no one" died of breast cancer, officially, until Janet Lane-Claypon published a comparative study in 1926. Before 1926? Nobody was tracking cancer rates, especially of breast cancer. As technology improved, diagnostics improved, and medical education improved, we found more cases of breast cancer. We cannot say if cancer rates increased or not, at least not with any certainty, before we started collecting reliable data. But what are reliable data?

If we find the specific causes of several different "autisms" and the spectrum becomes splintered into known medical conditions, some undetermined etiologies, and some other diagnostic labels, that won't mean that the "autism prevalence rate" was magically reduced. It means we changed the definition.

Back to the central question: What if I'm no longer "autistic" in 2013?

For some families this could mean a loss of services and supports. For me? It wouldn't mean much of anything, but that does not translate into not caring about those at risk of losing educational and social supports. It does mean that my personal life and work life will not be altered in any significant way.

Someone might then respond, "See! You're not autistic!"

The "autistic me" is shorthand, a definition that encompasses some, and only some, of my traits. My other physical and neurological conditions will still exist and maintain my status as "disabled" according to U.S. law. My palsy is not going to be cured. My paralysis will not vanish. My vision will not be restored. I'll still need a cane some days and I'll still walk with a pronounced limp. I'll still be whatever I am.

The debate about "autism" as a definition isn't going to end with the publication of the DSM-V.

I won't stop having my "autistic" traits if some book changes the definition. The traits will remain.

Also, and we should admit this openly, good clinicians care first and foremost about patients. They will use the DSM, any edition, as required by government agencies and insurance companies, but that doesn't always mean applying the DSM rigidly. Obtaining appropriate supports and services might mean applying a label from the text that isn't an exact match. Clinicians will tell you that the DSM is a guide, not an inflexible force of nature.

Tough, Painful Days

2012-01-17T08:00:00.000-08:00

My goal with the new year was to be a bit more entertaining as a writer. It is hard to think about being entertaining when I'm sitting on a "gel pad" cushion with one foot elevated and typing with one eye closed. Any humor at that point is unintentional.

I'm not doing well this week. Something is wrong with my left foot, so I'm limping again. I used the cane last night. My right eye isn't working either. With headaches, back and shoulder pain, blood loss, and more, I need a break.

Pain won Tuesday night. I crashed and didn't crawl out of bed until 11 am on Wednesday. It is frustrating when my body fails me because the pain starts to interfere with thinking clearly.

I tolerate the physical limits until my body interferes with my mind. Thinking trumps walking or seeing perfectly. I can deal with a limp. I cannot stand to sense my mind is clouded and unable to focus. I never like it when medications make my mind feel slow, and I really dislike it when pain is the cause of mental molasses. When it is pain slowing the brain, the only option is painkillers.

Maybe it isn't that my mind slows. It is more accurate to describe my mind as overloaded. Still, I'm not as productive as I want to be.

On Tuesday, I limped on into my new campus office.

Understand the university is expanding and this really is an exciting time for students and faculty. However, the construction means I'm in my second temporary office of the school year. The temporary office is now in a 1970s classroom building that has been "fixed up" with new paint and carpet.

I entered the building and was overwhelmed by some sort of flowery scent. I'm not sure why, but the entrance smells like the perfume counter at Macy's. Since I'm prone to migraines, this was not a good first few moments. I'm assuming they didn't want people to smell paint and carpet glue upon entering the building.

I looked about and soon realize the rooms were numbered in the 300s, while my office is in the 100s. Strange, I thought, since I entered from the ground. Then, I remembered that everything here is on a hill, like our current house (not the new one). So, I went looking for an elevator. I didn't know the building layout, though, and only found stairs this first day.

Hobbling down the stairs, with my computer and books, it was a long, painful journey to the "first" floor. Since it has no windows, I'd call it a basement.

My legs, back, shoulder, all ached. My head was splitting (and still is). With other medical issues right now, just not a fun journey. I should have found the elevator.

When I found my office, I realized the university was taking my move from Minnesota somewhat seriously: I was working in gopher hole. Again, this is temporary and for a great reason. A new high-tech building opens in 2012. But, not ideal for my senses and physical limits. Then again, almost nowhere is good when I'm in pain and overly sensitive to everything and anything.

My office is part of a collection of five or six small offices created out of a former classroom. It's a little box with white walls. The lights are motion sensitive, so if you sit and read… the lights go out. And, despite the perfumed entrance, the basement smells of paint and glue.

I found an outlet opposite my desk. My computer power cord didn't reach. In trying to make things work, I pulled the wrong way for my already sore back. Yep, I managed to hurt both my back and my shoulder trying to plug-in a cord. I whined, which echoes in the little room.

Today, Thursday, I took my books and computer in a handcart. I didn't lift anything. I tried to walk as little as possible. Unfortunately, even the few stairs I have to climb to enter my classroom were too much. I was in so much pain that I was dripping sweat. The sweat was running down my forehead, into my eyes.

I had to cut office hours short and head home before 2 p.m. My body is just too sore.

Since getting home, I've had a shower and soaked in a bath. I need to get back to 80 percent or so by next week. I'd like to imagine my students had little idea I was in pain this week. Then again, I find it hard to believe they didn't notice I looked like I was wearing a suit in a sauna.

I love teaching. Even in pain, I do enjoy the class. That's what makes it possible to work through the painful days.

Critics Question Obama Choice For Disability Committee - Disability Scoop

2012-01-14T08:10:00.000-08:00

I've come to realize that many readers of my last post weren't aware of what started the latest round of debates within the "Autism Community." Actually, this is merely a continuation of an on-going series of disagreements between two communities. If interested, here is the link:

Critics Question Obama Choice For Disability Committee - Disability Scoop

The basic background, as best I can tell, is that two groups don't like each other and don't want to listen to each other. On one side, we have some parent advocates and on the other we have self-advocates. That's a simplification, but it offers a basic overview.

I'm not a supporter of either of the two groups at the center of this current debate. They have far more passion and conviction on issues that I don't consider my highest priorities.

So, there's a debate about an Obama appointment to the Committee for People with Intellectual Disabilities. I don't even like the name of the committee, but that's not a debate that would engage me.

For me, the biggest issue of late is access to buildings on the campus where I teach. They don't have enough ramps and my classroom can only be accessed via four steep stairs. That's important to me. (The campus is building a great new building that will be much, much better for access.)

The debates about things like "with autism" vs. "autistic" simply don't raise my passions. And yes, I should care more about the DSM-V and things like "What happens to Asperger's Syndrome in 2013?" That's a debate in the area of scientific rhetoric, and it is interesting, but I'm not going to like or dislike someone simply because he or she disagrees with my view of the DSM revision process.

The "community" will debate this appointment, as they debated the appointment of a self-advocate. Insults will be exchanged, both subtle and direct, and nothing much will be accomplished other than reinforcing some bitterness.

And the new year begins without much change.

Autism Community, Highs and Lows

2012-01-13T08:16:00.000-08:00

Around the blogs, forums, and social networks, the year began with the annual call for cooperation and civility within the "Autism Community." It is a community I'm not sure exists, but there are certainly communities.

Within four to six hours, the divided community found itself in yet another round of "Who speaks for whom in the autism community?" I linked to one New Year's post on Facebook, but generally I don't get too involved in the blogosphere nastiness. It isn't much of a secret that I'm not that engaged in "causes" and don't care for the debates.

We do not need to share experiences or challenges to support each other. Why do we so often begin with the assumption that if you don't share identical experiences, you can't be an advocate for autistics / people with autism / whatever description you prefer?

There are a handful of parents who will never consider high-functioning, verbal, non-verbal writers, twice exceptional, or whatever else they view as less negatively affected by autism to be "autism" as they experience it with their sons and daughters.

That's okay with me. Their children do have different needs. I'll support some of their causes and not others. I'll support some research projects and not others.

But, just as I need to appreciate that their experiences are different, those parent activists need to remember that the "other" autistics face obstacles, too. Those obstacles include job training, access to education, and navigating a medical system that can be intimidating.

I do not "speak" for parents, other teachers, other researchers, or other autistics. I claim no expertise on what is best for or desired by anyone other than myself. I have some general suggestions, yes, but I always admit those recommendations are mine alone. Sometimes I will agree with activists and "movements" and often I will not.

I do not view the needs of "autistics" as a singular list of shared priorities. I cannot argue that distinctions of "high" and "low" functioning do not matter. There are different needs.

But the distinctions are not neatly demarcated. I have more "high" functioning days than"low" -- but my experience is only mine. A few years ago, in the harsh winters of Minnesota, I had more low days and even nonverbal days. Situations change. But, that's hard for some people to understand.

I doubt there will be civility and mutual support anytime soon. The divisions are simply too deep, the debates too heated.

It is a shame that these debates are the most obvious trait of our online communities.

Geek? Nerd? Autistic?

2012-01-10T07:00:00.000-08:00

Are you autistic because you're a geek? Or are you a geek because you're autistic? Would you even mention it during an internship interview?

I've been asked numerous times if my interest in technology is somehow connected to having an "autistic" brain. However, I'm reasonably certain no one had asked if technology made me autistic. Yet, the question was asked last week.

Now, I can't really argue the point too much. I'm a techie or geek or whatever you want to call me. I've loved computers since I first sat down at an Atari 800. Asking a diagnosed autistic programmer about a trend among programmers? I'm not sure I can be objective.

Seeking to clarify, the programmer asked me if there was now a somewhat nonchalant, or reckless, impulse to think of all "geeks" as autistic. He described self-diagnosed Aspergers as "trendy" among some of the young programmers he has interviewed in the last year or so.

It's as if coding turns you into an "Aspie" somehow. It seems like these kids are linking programming and autism. You can be good programmer and just be a good programmer.

Understand, he wasn't being mean and certainly isn't ignorant about autism. His point was that for some reason the "Geek Syndrome" is being mentioned by young programmers during job interviews. One even told him, "I have Aspergers, so you should hire me."

I asked if this wasn't a bit of hyperbole. I was assured it wasn't, and that the hiring committee at this company has been a bit taken aback by the situation.

We're all a little different, at least in the development side of the building. We sit in our offices and don't always realize the rest of the building has headed home. Yeah, we're different. But none of us ever thought we had a disorder.

I'm fairly certain that a greater percentage of programmers, engineers, scientists, and mathematicians do have "autistic" traits. I'm not alone in that assumption.

Here is a quote from Temple Grandin:

"Is there a connection between Asperger's and IT? We wouldn't even have any computers if we didn't have Asperger's," she declares. "All these labels -- 'geek' and 'nerd' and 'mild Asperger's' -- are all getting at the same thing. ... The Asperger's brain is interested in things rather than people, and people who are interested in things have given us the computer you're working on right now."
— ComputerWorld (2 April 2008)

So, in the end, I don't know what this trend means. Maybe more of the programmer's colleagues have autistic traits than he realizes? Or maybe "Aspie" is a trendy way to describe the traits that have long made programmers different?

I can safely state that the computer itself and coding has not made me "more autistic" than anything else in life. If I didn't focus my energy on computers, I'd focus on something else.

What is Autistic Me, the Blog?

2012-01-08T08:20:00.001-08:00

Thanks to many others in the autism community (or communities), this blog, its Facebook page, and its Twitter feed are growing quickly. This growth means new readers sometimes ask me the following questions:

Are you a parent, educator, researcher, autistic?
What is your perspective?
What is your specialty?
Where do you live/work/speak?

I'll answer some questions in this post. There is also background posted on the blog, and there is a link to an autism-themed section of our website. I'm still working to restore the website, but it is available at: http://www.tameri.com/csw/autism/

1) What I am
I am a writer, educator, researcher, and person diagnosed / labeled as high-functioning autistic. I am not a parent. I am not a medical doctor. I am not a psychologist. I am an adult in my 40s, not a teen or a young adult with autism.

My wife, my family, and my cats are the most important things in my life.

2) My perspective
My greatest concern as an adult is how to navigate the workplace and the social networking required to advance a career. I'd be most comfortable working at home, alone, writing what I want for as many hours as possible. But what I'd be most comfortable doing is not what is the best thing for me to do.
I list writer ahead of educator, and those two ahead of all else. Writers educate, I would argue, so it is something of a false division. When I write fiction, I'm still writing to persuade and educate my readers. I write this blog to educate.

My conviction is that creative writing and the other arts are often the best way to change hearts and minds when it comes to tolerance and acceptance. This conviction compels me to be in the classroom, teaching future writers and teachers about their potential influence in the world.

Education is my activism. I don't go to rallies. I don't join large groups. What I do is try to be the best writing and communications instructor I can be. That's the limit of my physical and emotional energy, I must admit. Social interactions are just too demanding for me much of the time.

3) My specialty
My graduate research at the master's and doctoral level involved technology and the teaching of writing. The research focused on marginalized populations, including non-native speakers of English and the disabled. As a researcher, I've come to view life with autism is similar to speaking a "different" language than many other individuals.

Like many diagnosed with autism, my language patterns and cognitive processes are different. I have to "translate" some idioms, sarcasm, and figurative language. I memorize English words and phrases, much as a non-native speaker might until a new language is naturalized. The problem is, language never seems to become naturalized for me or many others.

I have studied the rhetorical challenges of defining "autism" and "language" while working on my research. One must define terms to research the various phenomena the words attempt to label. I am certain there is not one "autism" but rather a broad range of underlying conditions we label based on the traits of individuals. Autistic is a description and what it means varies by the autism experienced by a person and his or her family and friends.

My research has led me to focus some energy on which parts of the brain process language and how language cognition occurs. I have no doubt there are neurological underpinnings to language differences.

4) Where I am
My wife and I have moved from one side of the Continental United States to the other. We were both born and raised in Central California and I am committed to helping my native Valley in any way I can. Today, we live in Western Pennsylvania, only minutes from Ohio and West Virginia.

I teach at a small private university in Pennsylvania. I am on campus two days a week, and I admit that it is not easy some days. My dean and department head are supportive, and they know I struggle to navigate some aspects of the workplace.

As for speaking, interviews, and other public outreach, I have addressed audiences in states from Minnesota to Texas and California to Florida. It isn't easy to travel, but I believe a physical appearance is often more effective for larger gatherings than a teleconference or other remote appearance.

I am available for email, telephone, or computer-based interviews, if that is the best option.

Other Thoughts
This blog discusses my experiences and whatever catches my attention, at least as related to autism. I have a separate blog on education and maintain another blog with my wife on the topic of creative writing.

The Autistic Me isn't a place where you'll find passionate advocacy. I prefer to simply reflect on my experiences and what those experiences might mean. Hopefully, my reflections help others appreciate my perspective. Remember, my experiences are only mine. I cannot and do not pretend to write for "The Autistic" experience. I'm simply The Autistic Me.

Weighty Matters

2012-01-07T07:00:00.000-08:00

Many parents ask me about my diet. Just looking at me should answer the question. Diet? Ha! The only "diet" in my life is diet cola. Usually we have Diet Dr. Pepper, Diet Pepsi, and Diet Canada Dry Ginger Ale on hand. The only reason I stick to diet soda is the quantity I drink.

I love food. My weaknesses are all the standard problem foods: bread, pasta, cheese, and any sweets. Donuts and pastries are difficult to resist. Forget trying to convince me to try a low-carb or veggie diet. Not going to happen. Any "free" isn't my first choice, from "fat free" to "gluten free" to "sugar free" I'm not that interested.

We prepare chicken and fish frequently. Red meat is expensive and I don't really crave it that often. But, I want my seafood or chicken with some fresh bread. At least I like bread plain, especially warm fresh bread.

Like too many adults, I struggle with my weight. My "ideal" weight according to my doctors is around 170 pounds (77 kg). That is anywhere from 25 to 30 pounds less than my current weight range. Even at my best this summer, I was 20 pounds above this seemingly impossible 170. But, I was there only a decade ago, so it is possible.

I am trying to eat less and exercise more. Fewer calories and more activity seems to be the best approach to weight loss for me.

My wife can attest that there is no way you could remove all junk food from my diet. I'd be really grumpy.

And I just finished part of a "peanut butter meltaway" from a local candy shop. Now, for some warm tea (Scarlet o' Peara) from The Tea Source.

The Crowded Autism Web

2012-01-03T20:38:00.000-08:00

Forgive me, but it is time for some blatant self-promotion. The Autistic Me has had a steady readership for several years, but I'd like to see that readership expand throughout 2012.

On these pages, I try to answer reader questions. I attempt to write about life as I experience it. I also try to address the challenges my traits present to friends, family, and coworkers. I do try to post something new each week, sometimes more frequently. The more questions and feedback, the more I post in response.

Someone mentioned to me that there are so many websites, blogs, portals, et cetera, dedicated to autism that she only found my blog "by accident" while skimming The Autism Hub (http://autism-hub.com/). The sheer number of autism blogs, both active and zombies, is astounding.

A search of Blogger found 38,000 autism-related blogs. Some are only loosely autism-focused, while others are far more specific than my own blog. In this crowded space, it is difficult to be noticed without followers. It is one of the truisms of the media: popularity begets popularity. The more follows or fans a website has, the more likely new readers are to find the site.

It is up to readers of this blog to spread the word so yet more people will stumble into The Autistic Me. If you would be so kind, I'd appreciate it if readers might "follow" or "fan" this blog. I'd like to reach 500 followers on Twitter and Facebook by the end of January 2012. There should be a tipping point when the growth in followers accelerates, too.

On Twitter, The Autistic Me has 368 followers.
https://twitter.com/autisticme

The Autistic Me has 217 followers on Facebook.
https://www.facebook.com/autisticme

Via Blogger / Goggle, I have 60 followers.
(You're already on the site, but the URL is http://theautisticme.blogspot.com/)

Via Networked Blogs, I have a mere 11 followers.
http://www.networkedblogs.com/blog/the_autistic_me

Spread the word and follow along. Again, thank you to all my readers.

Genetics and Autism

2011-12-31T08:00:00.000-08:00

I've been sitting on this report for a month or two while I did a bit more research on the original sources and similar studies. As regular readers of this blog know, I believe autism is better described as "autisms" and that likely contributors include de novo genetic complications (sometimes called pre-natal genetic copy variation). In these forms of autism, genes replication introduces errors. This is not the genetic of heredity, a common misconception when the term "genetic" is used to describe some forms of autism.

From CBS News:

Children with autism have distinct facial features
For the study - published in the Oct. 14 issue of Molecular Autism - researchers compared facial features in 64 boys with autism with faces of 41 typically developing boys, all 8-12 years old, with a 3-D camera system. After mapping out 17 points on faces, the researchers found significant differences between the two groups.

The study found children with autism had wider eyes, and a "broader upper face," compared with typically developing children. According to the study, children with autism also had a shorter middle region of the face - including the nose and cheeks - as well as a wider mouth and philtrum, the divot above the lip and below the nose.

Our default physical features are genetic. (Injuries, diet, and other factors can change those features, but the default is what I am addressing.) There are several genetic neurological conditions that are accompanied by physical characteristics. Some of these conditions are inherited, while other are de novo replication errors. What's important is that this study suggests at least some forms of autism can be "seen" via facial characteristics.

The evidence of a correlation between facial traits and autism was found by the researchers. The more horizontally oval a young boy's face, the more pronounced the autistic characteristics. Because more than 50 boys with autism were examined, the statistical likelihood that this can be generalized is significant.

The study also found that children with more severe autism traits such as behavioral problems, language difficulties, and repetitive behaviors had distinct facial differences from other children with milder autism.

Previous research has found that autism is associated with an increased neural density in the frontal cortex and left frontal lobe regions of the brain. This neural density is the result of de novo "over replication" of some cells. Basically, the forming brain won't stop forming when it reaches the normal stopping point. More and more neurons are created, especially in the part of the brain that controls executive functions.

In 2011, Dr. Eric Courchesne presented a paper on this at the International Meeting for Autism Research. Dr. Courchesne found that autistic individuals have 25% to 65% more neurons in regions of the frontal cortex than are present in typically-developing individuals. (see: http://jama.ama-assn.org/content/306/18/2001)

The increase in neurons originates during cell division occurring between the 13th and 18th week of pregnancy. The early second trimester is when neurons develop. There is no known mechanism that could produce this abundance of neurons after birth, either.

The University of California MIND Institute found that this abundance of neurons is prevalent among autistic children who experienced "regression" — seemingly going from normal development backwards to a non-verbal stage. I've read various theories on this, from "the brain is too big" to "the brain gets overwhelmed."

We don't test "normal" children with MRIs to measure neural density. The only way we will know if the density does predict regressive forms of autism is to scan several thousand children shortly after birth and every six months from then on, until we start to determine which children are autistic.

I want to remind readers, again, that anything we learn about "autism" likely applies only to some people we describe as "autistic." For now, "autism" is a catchall that is more likely to be several different conditions. We are learning more every year, and what we learn also reveals how much we don't know.

Additional Sources:

Courchesne, E. et al. Neuron Number and Size in Prefrontal Cortex of Children With Autism. JAMA.2011; 306(18):2001-2010. doi:10.1001/jama.2011.1638

Lainhart, J. and N. Lange. Increased Neuron Number and Head Size in Autism. JAMA. 2011; 306(18):2031-2032. doi:10.1001/jama.2011.1633

Autism Website Converted, Updates to Follow

2011-12-29T20:00:00.001-08:00

My autism research and speaking website is slowly coming back online after a minor glitch. While this doesn't directly affect the blog you are reading, it does affect a few people kind enough to link to my personal site.

Over the Christmas break, my wife and I upgraded our home computer systems and much of our software. The upgrades included Adobe Creative Suite 5.5 and migrating our systems to the latest OS X 10.7 release. Overall, the process was uneventful. However, there was one small glitch: our personal websites were created in iWeb. For our business website, we have long used Dreamweaver (back to the earliest Macromedia versions), but iWeb was ideal for visually appealing sites for friends and family.

While I could have forced iWeb to continue working for us, we decided to migrate to RapidWeaver 5. The migration was relatively painless. I say relatively because moving to RapidWeaver did rearrange directories. Several websites linked to information on my personal autism pages… and now those links are broken. I'll do some redirecting of links, but I'm sure some links will simply be "dead" unless the linking site decides to update the URLs pointing to my pages.

The updated URL to my personal autism site is:
http://www.tameri.com/csw/autism/index.html

In the coming weeks, I will restore some of the charts, graphs, and information from my doctoral research. This process will take time, but the data will reappear eventually. The charts on autism rates and diagnostic criteria are useful and I will restore those as soon as possible. I'll also restore some slide shows, most likely during the summer months.

On another topic, I've been pondering adding a podcast to The Autistic Me. I'm not sure if that's a good idea or not, or even if there would be any interest. If you are a reader of this blog, how do you feel about a weekly podcast? Or, is the blog sufficient without the need for yet more of my ramblings?

Time Vortex

2011-12-28T07:00:00.000-08:00

My wife tells me that I must exist within some sort of time vortex. When I estimate something will take an hour, it inevitably requires at least two. Yet, from my perspective, it seems only the anticipated hour has elapsed. I'll be working at my computer, certain a television show I planned to watch is about to start and my wife is left to explain that the show ended an hour ago. And that's nothing compared to my mornings.

No matter how early I wake and no matter how carefully I plan, most days require a two hour warm up period, at least. It is the rare morning when I am ready to work or leave the house before 9 a.m. — and far more likely that I won't start functioning normally before 10 a.m. When I do rush to leave early, I end up spending time feeling ill at work. No matter my intentions, my body rebels for two hours and I must submit to its terms.

Once I'm working, I lose track of time. What seem to be minutes are often hours, as I've already explained. That's not a bad thing, since nothing would be worse than a slow, ponderous work day. However, I'm often left wishing there were twice as many hours in a day.

At night, I often have as much difficulty falling asleep as I do waking in the morning. I find myself drifting in and out of a light sleep for several hours. Some nights I give up and work or write, much as I am doing at this moment. It is as if my body clock is off by four or five hours.

I've adapted to my personal time vortex by trying to be extra early. Though I seldom manage to be as early as intended, the effort at least keeps me closer to on time.

Even when I've taught morning classes, I have managed to be on time. Often, barely on time, but that didn't matter because shared classrooms mean waiting for the previous class and instructor to exit before entering the room. For the last year in Minnesota and during my first year at my new campus, I scheduled "office hours" for the two hours before class. That's one way to never be late to class.

I'd love to know where the lost minutes and hours go. It would be nice to have some of them stored away for days with too many deadlines.

Distracted by Everything

2011-12-26T17:58:00.001-08:00

I get distracted easily. While I prefer to think of it as a curious mind eager to learn, the truth is that I end up following tangents that consume hours.

I'll be reading something for work and encounter some little factoid that demands exploration. The next thing I know, an hour has been lost to reading about the history of Amish quilt designs. There's nothing too obscure or too mundane; every bit of information leads to a dozen more bits.

My wife and I share a passion for information and often watch History, Discovery, Science, and the other educational cable networks. While watching, I'll sit with my laptop and search for the sources they cite. My wife will do the same, especially while watching the Food Network.

It isn't a problem to follow tangents while watching television or reading for enjoyment. It is a problem when you can't resist the tangents while working. And… I can seldom resist.

The mix of Google Bookmarks, Safari's Reading List, and the wonderful "Save As Webarchive" feature have allowed me to save some articles for later reading, but it is still difficult to set something aside for later. I have a folder on my each of my computer systems named "Research" with more than a dozen categories within that folder. At the moment, there are 1,175 items in the folders (1.12 gigabytes of data). There's more, but those files are in other research folders for current projects.

This weekend, I'm working on a report for the university. The research leads me in dozens of different directions. Inevitably, I spend an hour here and an hour there off on those tangents. While working on a proposal for writing courses, I find myself reading about online education, the psychology of writers, and trends in technical communication.

Instead of skimming university course catalogs, I end up reading the detailed course descriptions and visiting writing program websites. The courses sound so interesting, I am compelled to read the syllabi and then research yet more. The right approach is to skim, take notes, and move on with my work. But, I love information.

A class on medical rhetoric? Of course I'm going to save the reading list and start researching the topic. Oh, and who wouldn't be interested in the rhetoric of physics? Yes, there is such a thing. As a fan of the Science Channel and Prof. Michio Kaku, how could I not wonder what the reading list for a course called "The Rhetoric of Physics" includes? Science is a series of ongoing debates.

Maybe you can understand my problem. There's so much information out there, so much knowledge to attempt to grasp, and I want to learn everything.

Even as I write this, I'm pondering a half-dozen or more things I'd like to research about research tools. Which web bookmarking tools are best? What's the best way to grab articles for later reading? Is my research properly organized?

At least my wife loves learning as much as I do. She's also compulsive at organizing data and information.

Christmas Thoughts

2011-12-24T19:52:00.001-08:00

To all our readers, we wish you all the best this Christmas.

We've had a quiet week and plan to have a quiet, relaxing Christmas Day at home with our little furry kids. I like simple Christmases, which are what we have had for several years now.

Living 2538 miles from "home" (according to Google Maps) means we don't have family gatherings to attend. There's no pressure to make the rounds from house to house. While I love my family, it's nice to have no pressure on us to be everywhere and see everyone over the two days of Christmas Eve and Christmas.

Also, we don't do parties or big social events. We attended one small gathering, and that was it. It wasn't easy for me, but it was at the home of two friends to whom we owe much. It was a nice gathering, with nice people. Plus, it was quiet. I like quiet.

We did make a few trips to local stores, a nearby mall, and into Ohio briefly for some craft supplies and other errands. The mall was surprisingly nice, with crowds but not so many people you couldn't move or shop in comfort. We even ate dinner on Tuesday at the mall and half the restaurant was dark.

There's no snow on the ground (a huge plus, to me), but a little fog and misting rain. The weather this week reminds me of home, too.

We watched movies tonight, Christmas Eve, and had our traditional Tex-Mex dinner of enchiladas, rice, and beans. It was perfect.

It's wonderful to spend some quiet time with my wife and our kids. That is the perfect holiday.

End of Semester Rush

2011-12-12T18:20:00.000-08:00

I created a schedule for myself — technically my wife created it with/for me — so I would post to each of the blogs I either author or co-author on a weekly basis. But, this is that crunch time known as "finals" at universities. It's also the holiday season and several other things all at once.

I've read that everyone gets a bit stressed at the end of the year. We have Christmas, New Years, family gatherings, and there's the simple reflection on another year passing us by. The years seem to race on by as you get a bit older, too.

The schedule means I might not get the blogs updated as often as readers might enjoy. For that, I do apologize. It's nice to know people recognized I was offline here and elsewhere (Twitter, Facebook).

Grading will be a frenzy this coming weekend, so I might still be offline much of the time. I am hoping that after a year or two in the new post and in a new region I'll have adopted a better routine.

Also, someone asked me why I don't write with the same dry wit I exhibit when speaking. I've mentioned before that I don't try to have any wit — I merely state things as I see them.

It does make sense to try to be a bit more "entertaining" in the coming year. Maybe that's a "Resolution" to write more and about more topics.

For now, I just wanted to leave a note letting readers know I'm here and working. Lots of working happening.

Employment Concerns, Autistic vs Normal

2011-11-27T13:39:00.001-08:00

I worry about my job. I also wonder how much of this concern is reasonable, what might be considerer normal for any probationary employee, and how much of my concern is unreasonable.

While many today are worried about job security due to the economy, I worry about my job because of my personality.

Fifteen to 17 percent of adults with ASDs work full-time, according to a U.K. study (2007). Other researchers have found similar trends. Even those of us with doctorates struggle with employment in academia (Diament 2005). Outside technology fields, the world is less than welcoming (Anthes 1997).

We are attending college, obtaining degrees, and ending up unemployed. It is a struggle to finish college, and yet that only marks the beginning. We love the success stories of students with ASDs in college (Erb 2008). Those stories don't answer the "what next" question. A U.C. Berkeley study found adults with ASDs struggle with unemployment:

— Almost all participants … reported lengthy periods of unemployment and/or underemployment, as well as lack of opportunities for career advancement. In the words of one participant, "I spent much more time being unemployed than being employed altogether" (Müller, et al 2007).

The university is a workplace, and I worry about the same things I'd worry about in any other job. At some point, I will say or do the "wrong" thing. I'm certain I've said and done plenty "wrong" already. You can say the wrong thing in more ways than I could outline here. You can support the right program, for the right reasons, yet find yourself opposing someone powerful. You can might criticize something a powerful person supports. It often seems the only good approach to employment is to say nothing — but I'm not capable of saying nothing at all.

I work from home as much as possible to avoid interacting with coworkers. I don't want to say anything to anyone, because I know I'll mess up by having any opinions.

There's little reason to comment on what is going well. Why would I say something about a routine day or a decent class? So, I end up only mentioning problems that should be solved. I don't like to make small talk or to waste time with the obvious. As a result, people assume I am a "negative" person, when the reality is I look to solve problems. In my ideal day, I'd have little to say or I'd only have extraordinary events to celebrate. But that's not most workplaces. We all see problems and, I hope, most of us would like to improve our workplaces.

People don't appreciate a blunt coworker. Administrators and supervisors definitely don't appreciate blunt, opinionated employees. That is true in academia as much as any other workplace. We know how well you get along with coworkers helps determine your future in the workplace.

Hiding to avoid speaking out, you risk ending up being called "anti-social." If you don't network, it is hard to be promoted, much less to survive probationary periods.

I'm convinced there are problems to solve where I work. That doesn't make it a bad place and says nothing about most of my coworkers. We can and should be creative problem solvers at a university. But, I know that speaking up and trying to solve issues seldom wins friends.

Will I survive the probationary period? Will I earn tenure at the university? I have no idea. There are times when I wonder if I can navigate the university social and political maze.

Sources Consulted (Yes, I know the formatting is random):

Anthes, Gary. "My Coding Just Flies." 1997. ComputerWorld. http://www.computerworld.com/action/article.do?command=printArticleBasic&articleId=9032498.

Diament, Michelle. "A Secret Syndrome." Chronicle of Higher Education (2005)

Erb, Robin. "Autism No Longer an Obstacle for Students Seeking College Degrees." Detroit Free Press March 10 (2008)

"I Exist: The Message From Adults With Autism in England." (2008): 44.

Müller, E., Schuler, A., Burton, B., and Yates, G. Vocational Supports for Individuals with Asperger Syndrome. (2007)

Surgery Monday and Catching Up

2011-11-17T20:24:00.001-08:00

I have minor surgery on Monday to address a problem that has been recurring for several years. A few years ago, the problem made Christmas a bit complicated — I was planning to get my wife a gift and ended up in the hospital that day. This year, I'll be having surgery the day before a guest arrives to stay with us for a few days.

My wife and I need things to settle down for a few weeks so we can gather ourselves and relax. Neither of us has a "laid back" personality. We are both perfectionists. We both feel like we are always falling behind, even while we finish tasks ahead of colleagues. Being a perfectionist is hard work and emotionally draining.

Surgery comes right as I'm dealing with some issues at work. It also comes as we are trying to fix up our existing house enough to put it on the market next summer. There always seems to be more to do than is possible, but that's because we think of everything as important.

I want the classes I teach to be "perfect" in terms of content and delivery. I don't want anything to go wrong that could be considered a result of my teaching or planning. I want my websites, blogs, and other projects to have that same perfect content and flawless planning, no matter how impossible that is. Reports I have to prepare for work? The columns I write for publication? All have to be perfect or I feel horrible.

Yet, life isn't perfect. I realize that, and so does my wife. But we worry about things. We both worry and we both tell each other not to worry.

We worry about our jobs, though we have good jobs. We worry about money, though we are are financially more secure than 97% of Americans.

We don't seem to relax well. We even plan our relaxation.

Following surgery, I'll feel like I have to make up for lost time. It has been lost time all semester, granted, since I've been sick with bronchitis, anemia, and some other issues. I'll be stressed because there is so much to do, while the stress and worry will make it harder to finish the tasks.

The key will be reminding myself that I need to work slowly and steadily to get back on track. The books I wanted to finish writing? They will have to wait. The programming ideas? The website updates? All will have to wait until I feel better. Some things will be months late. That's just how this year and next will be.

I wish we didn't take things so seriously, but that's also why we are both hard workers and good employees. If we could relax, we wouldn't be us.

Moving (Again) and Home Owner Stress

2011-11-07T14:36:00.000-08:00

We will be moving again in April, if things go according to plan. This will be our fourth move in the last five to six years. That might not sound like a lot of moving, but moving is stressful for everyone and extra stressful for two people with a need for order and routines.

Moving is a lousy experience. Things get damaged, misplaced, and general disorder reigns. We lost four desks in moves, including two I really liked. We were never compensated for those loses, either, with bothers me. I end up attached to desks (and other things). Desks are where we work. I write at my desks and they become part of my routine. I still have the desk my family purchased for me in high school (if not earlier — I cannot recall).

After we move, I do plan to replace both my computer and writing desks with a single desk. Sure, it won't be perfect, but I want to consolidate my work area. Plus, I want space for a scanner and other things I use frequently. (I like to scan books and documents for the text recognition.)

This move ideally will eliminate a great deal of home ownership stress. The house we initially purchased has quite a few little issues that need to be repaired. It could be a wonderful house. If we had endless funds available, I would consider paying to have many of the issues fixed because I love the neighborhood. However, I don't love it enough to pay what we would for a new house.

The new house is being built about 1.8 miles from the house we own now. It's also on a lot that is only slightly smaller (0.40 acre). Because it is near a large regional park, the smaller lot won't matter so much.

Moving two miles shouldn't be horrible, right? We can move a lot of the little things ourselves. There are things we cannot move, from the laundry appliances to our beds, but I'm hoping we can do so much that it only requires one trip by professional movers in a small truck.

I want this to be the last move we make for many years. That was the ideal with this house! I don't want to be moving again until I'm done teaching full-time at the university. Then, I want to retire back to the Southwest.

The new house is now the "goal" that keeps me from total meltdown in the current house. There are so many little things that the house is emotionally exhausting. A new house won't be perfect, but we also won't be dealing with constant water issues in the basement. The new driveway will be concrete; it won't wash away during storms. My wife and I will have separate offices in the new house, too, so I won't bother her while she's trying to work.

The new bathroom in the master bath is a major benefit to me. It will have a "soaking bath" and separate shower with a seat. Sometimes, I need to soak in water. Some autistic adults suggest water is soothing; I appreciate warm water because I have a bad back and some other issues. The shower is nice when you're in a hurry, but a bath is much nicer.

Moving at the end of my first year teaching in a new university position will be stressful, too. My employee review is at the end of the year, as I try to earn tenure, there are final student projects in April, and much more will be happening. But, moving is going to be a good thing. It can't be any worse than the stress of this house.

Autistics Speaking Day

2011-11-02T10:48:00.000-07:00

Someone sent me a note asking why I didn't participate in National Autistics Speaking Day. The simple truth is, I'm not home on Tuesdays and don't have much time for anything outside my university duties on that day. I teach until 9 p.m. and don't get home until late.

I thought about writing something a day or two earlier, but I'm swamped with university projects, teaching, freelance writing, and a never-ending series of household-related tasks. I'm more than a little overwhelmed lately. I have to fit in a surgery this month, too, while staying somewhat on track.

So, here are my thoughts for "Autistics Speaking" as I glance at my new dry-erase board featuring a list of to-do items:

1. I am a "success" neither because of nor in spite of my "autistic" traits. I am a success because my wife, parents, extended family, and friends help me and I try to help them when I can. Success is a team effort, whether you're "normal" or not. Plus, no one is normal.

2. Autism does not define what I do for a living as a writer or teacher. I'm not in charge of anything autism-related at work, and the freelance writing seldom addresses autism or other disabilities.

3. Autism is a "disability" not a blessing or some special gift. So what? The list of human "impairments" is long, and almost everyone begins life and ends life with some level of impairment. Find ways to adapt, not ways to surrender.

4. Stereotypes of autism are unhelpful. The savant mythology, in particular, follows many of the college students I meet. They have to explain to peers, and some instructors, that autism is not synonymous with "Rain Man." Unfortunately, the media love unusual stories, so the "freaks and geeks" become the template for autism.

We did purchase the new whiteboard so I could see everything on my to-do list at a glance. My wife helps me stay organized, but I know several professors far less organized than I am. My lists and notes work well for me.

I'm off to work soon, for a series of meetings. That's how "normal" my life is. I go to meetings (where I'm as bored as everyone else), do paperwork, cash a paycheck (direct deposit), and pay bills (via
automatic bill-pay). My daily routine is nothing unusual, in other words.

That's what I want to say: My life is simply a regular life.

Autism and "Fitting in" with Peers

2011-10-31T10:53:00.000-07:00

A Facebook fan — and thanks to everyone following us on FB and Twitter — asked if I could address problems with "fitting in" with same-age peers. A good topic, and a difficult one.

The challenge is that there are two different "stages" I'm learning about among autistic individuals. As children, many high-functioning autistics seem to deal better with adults. As adults, the opposite seems to be the case, with autistics relating better to children. The challenges make sense, though, as I will explain.

As a child, the individual with Asperger's or any "high-functioning" ASD diagnosis is likely drawn to concrete thinking, pattern recognition, and might be an "expert" on a few subjects of special interest. Compared to his or her peers, the autistic seems "advanced" because some skills we associate with greater chronological ages appear early. These are not social skills, however.

The interest in topics and things, compared to other children's interest in play and socializing, appears "more mature" at first. This same situation occurs among gifted children, so a "twice special" child is going to be particularly prone to this "things not people" period of development.

Other children are unlikely to care about a single topic as intensely as the autistic, while adults view the specialization as an impressive sign of intelligence. Even when a splinter skill is not a sign of innate reasoning or analytical skills, adults only notice the skill or memorization is advanced beyond that of "normal" children. The autistic finds adults will indulge a special interest, especially in a young child. Adults become the safe, supportive audience for some time.

By adolescence the special skills and concrete reasoning of many autistics no longer entertains adults. The adults have become tired of hearing about anime, Disney films, space exploration, weather data, or other narrow interests. It's also no longer possible to ignore that the special interest or splinter skill is not linked to abstraction. The advanced cognitive abilities of analysis, synthesis, and evaluation likely trails the abilities of peers.

So, the autistic once rejected by children find herself or himself alienated from many adults over the years. By the late teen or early adult years, I've witnessed many autistics seeking out children as friends. The social skills he or she lacked as a child might now be in place, years later than is "typical" for development. The autistic can now relate to children — and recognizes that adults are less and less available.

Imagine being accepted by adults until your teen years, only to feel rejected as an adult. Yet, the young children who would have rejected you as a peer become more and more approachable as you learn social skills. It is as if your social circles went "backwards" from adults to children, while everyone else moved in the opposite direction.

When asked for advice on this social alienation, I generally suggest social groups and safe social settings.

Depending on the needs of your child (or yourself) you might find groups that are dedicated to autism, ADD/ADHD, and other socially frustrating challenges. I've also found groups of "gifted" people include many members with ASD and ADHD traits. You can also join groups dedicated to a special interest, from birdwatching to trains. These groups are good because being a specialist is embraced and celebrated. Social skills are secondary to the shared interests and experiences of members in these various organizations.

I have few close friends, and I know I can seem "odd" to other people. At some point in life, you accept being different is okay.

Autism and Teaching

2011-10-26T18:36:00.000-07:00

Following a panel discussion I was asked if my autistic traits made me a better teacher.

I replied, "No. They are a disadvantage for much of what I teach."

The mother asking the question was puzzled. I don't believe I offered the answer she wanted. This led me to ponder the question and the answer further.

I teach a literature-writing course this semester, "The Study of the Essay." The course is a survey of major essayists and requires students to write personal essays and reflections weekly. The essay is by nature an author's attempts to persuade readers in a personal way. The essayist is a character in his or her own work.

Like many autistics I've met, I read a lot of nonfiction and historical fiction. There are great nonfiction writers, most of whom use the same techniques any novelist or short story author would harness. But, I don't analyze the style while reading: I'm interested in devouring facts. Literary analysis is not my strength.

If I taught programming — which I'd love to do — my perfectionism and passion for orderly, elegant code might make me a better instructor. If I taught science — which I have done — I could focus on the beauty that is a predictable set of laws and theories. There are many subjects that might suit my inherent personal quirks.

But I teach in an English department. It's as confounding at times as teaching in an art department. I love English and I love art, but teaching them is a challenge for me.

Over the years, I've observed teachers who are much better than I am in the classroom. They have a talent for interpreting the unspoken signals of students. Somehow, they read voices, faces, gestures, and other hints. These signals help such teachers reach out to students and draw out what the students want to express. It's like being a psychologist, I suppose.

While I do know autistic psychologists, few work directly with clients. Their mannerisms, I hope they forgive me for stating, might make some clients uncomfortable. I've wondered if I make students uncomfortable. Do I seem detached at times? Do I seem distant to their needs? I have no idea.

At the end of each semester, I receive good evaluations from students. I don't understand why, since I have plenty of doubts about my abilities. As more than one colleague has said, I often wait for students to tell me that I didn't seem to know very much at all. But, I also admit at the start of every semester that I'm not a human database. That's one reason I prefer students explore and discover.

If I'm a good teacher, it is because I know my weaknesses. My autistic traits are simply what I am, so I work around them when necessary and embrace them when they help.

When Driving is Too Much

2011-10-23T15:40:00.000-07:00

Driving is okay when there is little traffic and I know the route by memory. I do not like driving on busy streets or highways and I hate driving on narrow roads or in cluttered urban settings. I also hate, truly despise, highways or freeways without sufficient exits and places to turn around when necessary.
I hate driving in Pittsburgh, enough so that I shake and get a headache after passing through the Fort Pitt Tunnel. I hate narrow, enclosed, claustrophobic tunnels. Two lanes, horns sounding, and tailgating. Horrible.

Today, we drove to Cranberry. I hated the last trip there and needed two days to recover. I hate the fact beautiful hills are being covered with townhouses. Narrow two-lane roads are trying to accommodate a flood of new arrivals. Yes, the economy in Butler County is doing well, but the roads and spaces were never meant to handle so many people.

We planned the trip ahead, knowing I hate the toll booths and most of the Turnpike, which is in a constant state of repair. While we made it to Cranberry in a half hour, I missed the exit because it didn't indicate it was the only exit. It implied the exit connected 76 and 79, not that it was the main route to Cranberry.

I was left angry, shaking, and barely able to function. For missing one exit we had to go through the toll booth and drive an extra 45 minutes to loop back right to where we had been. You should never, never have to drive 45 minutes after missing a single exit in a populated area. This isn't rural farmland — Cranberry is a booming shopping district. One stupid exit? Get real, Pennsylvania.

I am still angry. We had to pay to waste most of an hour? And the Turnpike is horrendous. Two narrow lanes, no exits, lots of construction, and flashing warnings that it floods easily. If it floods so easily, install drains!

By the time we looped around, I just wanted to return home. Home to California, where freeways have exits and are wide enough that the truck passing you isn't going to rip the mirror from the driver's side. Yes, I have seen cars "bump" on roads here in PA. It is insane not to have wider lanes.

Driving is bad enough. It often gives me a headache and any long drive leads to serious back and shoulder pain. I don't "like" my drive to work, but it is a lot better than living in a congested suburb. I do like the drive home — it is a relief to leave people and congestion behind me.

I am so angry that I don't want to return to Cranberry. It isn't worth the effort. I hate most of the shopping areas here. The roads cannot handle the traffic. There are traffic lights where they do no good, and signals are missing where they are most needed. Shopping near the city of Pittsburgh, the lanes to get on and off the expressway backup into the lanes trying to go straight. I've wasted 20 minutes trying to get through two lights and a stop sign that has no business being on a busy road.

You want people to shop, make it easier to get in and out of the areas. I don't mean the parking lots, either. I mean the roads to and from the suburbs are a nightmare.

By the time we reached Cranberry, I was screaming about how much I hate these roads. I was fuming at paying for the wasted time. Why isn't there a "loop back" at the toll plaza? Why isn't there a sign that indicates "Last exit before toll" as there is on the expressway? No, I'm not going back for some time. I hated the drive as much as I hate going into the city.

I still have a headache. I'm still tense. Though we "bought" $56 or so in office supplies for nothing but "rewards points" from OfficeMax, it wasn't worth the stress. Sadly, the only large bookstores are in these suburbs from Hell, too. If you want a decent dinner, you're stuck traveling into the Asphalt Abyss.

I've lost most of my day trying to regain focus. The idiotic notion that a short trip would help me recover from days in front of the computer? No way. The trip has left me in agony. Two painkillers didn't reduce the pain, but did upset my stomach more — and it was already in knots from the drive.

The traffic engineers in PA (if there are any) are in the direct employ of Mephistopheles.

Recovering from driving will take most of the next two days. So much for wanting to escape the house. I'm trapped, just like I was in Minneapolis. That really, really angers me.

Another Long Week

2011-10-21T21:38:00.000-07:00

I knew when I accepted my new job that it would not be a 40-hour work week. Last night, I had a work-related call just before 10 p.m. — a dedicated instructor caught in something of a jam thanks to scheduling conflicts. Tonight, I was working until after midnight on multimedia content for an online course. I barely had the first week's content loaded before the "official" start of the course. It has been one of those weeks.

I keep telling myself I'm doing better than expected. I do seem more organized than many other instructors, and I'm working hard to prove myself in the new position. But, I am also exhausted.

As readers know, my wife and I have been dealing with the damage from a flash flood. It was the fourth time water had taken over the lower-level of our house. I spent much of the last week worried about the new appliances (washer and drier) as well as calculating how expensive repairs are going to be. The good news is that the appliances do still work. The bad news? I need to work even harder if we're going to get the repairs and preventative maintenance done in the next two to three years.

My wife and I make lists. I have a list of the work that must be done on the house, work that should be done, and projects we'd like to have completed someday. The must-do list deals with structural and safety issues. Unfortunately, the flood drew attention to more of those costly must-do items.

Work pays for repairs. It seems simple enough. But, the reality is that we cannot pay for the repairs, so we'll have to use a home-equity line of credit. I hate that. So, I will be working on other projects to quickly settle the debts.

I've wondered why most people I meet don't seem to be nearly as "stressed out" as I am over the costs of home ownership. Do I worry more than most people? I'm paranoid about delaying repairs and ending up like we did with the water in the family room. Delays don't seem to be wise.

At some point, maybe not far off, I'll be working so much that I won't be working well. I worry already that my work isn't the best it could be because I'm trying to do too many things before the end of this year. The list of projects and the timelines I had hoped to meet are overwhelming. But I know homes do not fix themselves.

I always thought I was okay with time management and planning, but so far I've been way off when estimating when I could finish projects. Too many projects aren't being completed on time, while too many new projects are appearing on my to-do list. Telling people "I'm sorry, but I cannot do that" is difficult for me. I want to do all I can. The problem is, I'm reaching the point when I can't do many more tasks in a week.

The irony is that I tell audiences to plan and then double or triple estimated time requirements. I advise people to worry more about their mental and physical health than things. Yet, here I am worried about my house. With the worry leading, indirectly, to 50-hour work weeks, I'm starting to feel I'm not going to keep up much longer.

It doesn't help that I am still ill, either. I'm hoping the latest cold or whatever this is passes quickly so I can be more productive. Or maybe there's no way I could be more productive and remain sane.

Flooding Again, Medical 911, Forming Plans

2011-10-14T07:03:00.000-07:00

Our lower-level flooded again last night. We ended up calling a company dealing with such emergencies. A neighbor also helped me as I frantically tried to move important paperwork from filing cabinets downstairs to our dining room. Without my wife here, I did what I could on my own and it wasn't enough. Unfortunately, I lost some notes and research I was hoping to use in coming weeks.

Thoughts cannot be replaced, while furniture and appliances can be.

Earlier in the day, I had driven past our insurance agent's office. I had intended to obtain flood insurance this week. It probably wouldn't have been in effect, but I feel horrible.

Why didn't I stop? Because I was coming from a medical appointment, which led to a referral to a surgeon. I'm losing a lot of blood. As readers of this blog might recall, I was hospitalized over Christmas Eve a few years ago with blood loss. I needed a transfusion. We're near that point again.

http://theautisticme.blogspot.com/2008/12/hospitals-smell-funny.html

After having the sort of exam I required yesterday, I wasn't in the mood to stop and deal with insurance. There was a fair amount of discomfort and exhaustion after two hours in a medical clinic.

Ironically, the doctor had told me to limit exercise, not to lift heavy objects, and to take it easy until I am able to schedule surgery. Mother Nature had different plans for me. I carried two fire safes, a huge dehumidifier, and stacks of documents up the stairs as quickly as possible. I had to work a garage door that is broken and deal with doors that wouldn't open easily.

By 3 a.m., blood was running down my legs, but I didn't realize how bad it was until I looked down and saw a red "cloud" in the flood water. I came close to passing out, but I had to keep moving things. The bleeding stopped about 5 a.m., with me curled up on my side on a bed while more than dozen large fans and two monstrous dehumidifiers roared away in the basement.

The rain didn't stop.

Our driveway has been ruined by the storms. A wall between our garage and a basement room shifted with a ear-splitting "boom-crack." Two other walls started to bulge, allowing water to flow, but thankfully only at a trickle by this morning.

I'm exhausted. I'm shaking badly, pale, and still bleeding slightly. I've emailed my boss to let him know I might fall a little behind on projects this weekend. I really need some time to get my mind back on track.

Right now, my plan is to let the demolition team do their job and remove the walls that absorbed water. I'll also wait to see if the new appliances can be dried out enough with dehumidifiers and fans to work properly. This is heartbreaking for me, since the appliances were a gift from my family. Right now, I know they need to be re-leveled and inspected before I try to test them.

I'm assuming most of my tools are okay. Tools seem to be built to handle disasters as long as you dry them quickly. I'd hate to lose any expensive saws, the air compressor, or the lawnmower. I'm 99 percent certain the lawnmower will be okay, even though it was floating. I hadn't realized a metal lawnmower could float until I saw it drifting through the garage.

Right now, these are the plans:

Dry out the house, before the next storm.
Schedule my emergency surgery, so I don't end up hospitalized again.
Have the driveway repaired, ASAP, so we can direct as much water as possible away from the house during storms. Also, the driveway is impassible for a car because the gravel and dirt moved into deep ravines and tall mounds. A total mess for now.
Repair the walls that shifted, probably waterproofing as well as anchoring.
Make the minimal number of repairs necessary beyond flood-prevention.
Sell the house.

We might relocate before we sell the house. In fact, that seems to be the best plan so the house can be repaired without anyone (or any pets) living inside.

Moving is a high, high priority for me. I need to focus on my job, not pumping water out of a basement or chasing after my garbage cans. I do not want to see a lawnmower floating ever again. I'm going to talk to my boss and my coworkers to find a better place to live. We have to stay here at least for six years, somehow. But this move has been lousy so far.

I'm disgusted, tired, and frustrated.

Writing Instruction Blogs, Twitter Feeds, and Facebook Page

2011-10-10T15:28:00.000-07:00

My wife and I maintain two blogs, Twitter feeds, and a Facebook page dedicated to creative writing instruction. I have discovered that readers prefer to choose how they receive updates and blog feeds, so we've tried to offer the most popular options.

First, a reminder to visit the Tameri Guide for Writers (http://www.tameri.com/) if you are interested in creative writing. The Tameri website is not an academic writing website, though it includes some resources for teachers of writing.

Our blog on creative writing and mass market fiction:
http://www.tameri.com/wordpress/

My blog on using technology in writing instruction:
http://poetcsw.blogspot.com/

The two blogs are featured on our Facebook page:
https://www.facebook.com/pages/Tameri-Guide-for-Writers/239305212783049

You can find "Follow Us" links for Twitter on the blogs and on the Tameri website. Please consider following us using the social networking method of your choice.

Dinner, Panel Appearances in Western PA

2011-10-10T15:11:00.000-07:00

I will be participating in two upcoming events this month. The first event is for students and faculty at the university where I work. The second is a panel roundtable at a high school in Pittsburgh, PA. If your school or organization would like me to discuss autism, special education, or literacy issues, please do not hesitate to ask.

AHEADD Panel on Autism and Higher Education

Monday October 17th

Central Catholic High School

4720 Fifth Avenue, Pittsburgh, PA

5:30-7 p.m. Room 108/109

Please contact AHEADD for more information:
http://www.aheadd.org/
Phone Toll-Free: 1-877-AHEADD-1

The AHEADD Panel is open, but you do need to contact AHEADD to RSVP.

Campus-Only Event
The RMU event, which is tomorrow night, gives me hope that faculty and staff might be interested to learn more about ASDs and higher education. I'm hoping some faculty might see this announcement and consider attending:

Services for Students with Disabilities Dinner

"Autism and Higher Education"

October 11, 2011

4:00-5:30 p.m.

Sewall Dining Rooms B & C

Robert Morris University

Following the dinner is a screening of the HBO special, "Temple Grandin."

Autism, ADHD, and Creativity

2011-10-09T07:39:00.000-07:00

I have always been fascinated by the need for some people to redefine disabilities and differences as gifts, blessings, and strengths. When I was struggling with graduate school, the educational psychologist suggested the book Driven to Distraction. Instead of recognizing attention deficit disorder is a problem, a barrier to academic success, the psychologist was convinced that I had attention deficit and it explained my creative writing and other artistic interests.

I am doubtful of such associations, such as popular myths connecting depression, substance abuse, or other mental health issues to artistic genius. I wonder if statistically there truly is a significant correlation between talent and difference. Although we know the many famous stories of depressed or addicted writers and artists, what about the numerous artists no more or less challenged / impaired than the rest of the population?

When asked if I believed that my autistic traits contributed to my creativity, my reply is that every person's traits contribute to that individual's success in a chosen field. It is plausible that my sensory issues affect how I write about experiences, but that does not make my writing better or worse than anyone else's writing.

Practice, even if one has what might be called natural talent, is key to mastery of any artistic or intellectual pursuit. Practice, practice, and more practice. When you are passionate about an activity, it is easier to practice that activity. No one has to tell me that the more I write the better my writing will be. It is true that some autistics focus on an activity. Individuals with attention deficit hyperactivity disorder also focus intensely on favorite activities.

However, I know many autistics unable to focus on a skill or activity. These individuals focus on remembering facts or observed details. Only a small fraction of the autistic adults I have met are creative artists. Yet the reality is that few people are professional creative artists. I have not met a higher percentage nor a lower percentage of autistics with unusual, superior creative abilities.

When I speak to groups, parents often ask how they will discover the savant skills of their autistic children. Statistically, fewer than 10% of autistics have splinter or savant skills. A splinter skill means that one has unusual aptitude performing a task, but not a creative form of the skill. For example, being able to play music after hearing a song once is a splinter skill, not savantism. Being able to copy, mimic, or re-create is not the same mental process as generating new insights and connections.

Many individuals in my family are creative. My sister and father have artistic talents, and I consider them creative individuals. My mother enjoys many craft hobbies, such as sewing. Therefore, I do not consider my interest in arts and crafts to be related to anything unusual about me. I believe all children are interested in creating, but throughout school we tend to dampen the innate creativity of the human mind. Thankfully, my family never discouraged my creativity.

Instead of asking if people with atypical neurologies are uniquely creative, we should wonder why we are not better at nurturing the creativity of all individuals.

Autism, Health Issues, and Family

2011-10-05T20:37:00.000-07:00

Tonight my wife told me that she has been experiencing stress, worrying about my health from afar. I have been having some minor health issues for the last month or so. Experience has taught us that I am not good at recognizing how serious an issue is or is not. I did go to a "minute clinic" after a week of coughing, and was diagnosed with bronchitis. However, other health problems have continued and I am set to see a doctor next week.

One of the serious issues facing families of adults with autism is how to help an autistic person recognize and deal with health related issues. Because I am always in physical pain and discomfort is a constant in my life, it is challenging for me to recognize when a pain is something important. I have severe back pain and was even in a back brace as a teenager. I also have other injuries dating back to birth which cause shoulder and hip pain. For as long as I can remember, I have had headaches and migraines.

With my complicated physical situation, a few years ago I failed to recognize my vision was failing due to base membrane dystrophy. I thought the headaches were the familiar migraines. Once I had eye surgery, I thought pain and dizziness were the aftereffects and ended up hospitalized for internal bleeding instead. Over the years I have failed to recognize broken bones, bruised ribs, and even a serious hernia. Too often I cannot pinpoint the source of pain or its original cause.

It is understandable that my wife worries about me and she is not nearby. I know that I am not able to analyze my physical well-being. I do not understand why I am not feeling well and what actions I should take to solve problems. It turns out that aspirin does not solve every problem.

As I consider my own experiences, I do not know what the best advice is for other families. I rely on my wife, my mother, and other family members to help me recognize when I should see a doctor and even which type of doctor I should be calling. I doubt I could maintain my health living on my own if I did not talk to my wife on a nightly basis. Admittedly, even talking to her I have probably made some mistakes over the last few months.

Last night my eyes hurt a great deal. I had to decide if the pain was a response to lights at night, a physical tear in the eye, or the start of a migraine. I cannot easily determine when eye pain is a result of the membrane tearing because lights can actually hurt more than a physical injury. That seems to be impossible to explain to the ophthalmologist. All I know is that my eyes really hurt.

Truly independent living scares me. I believe I will always need someone to help determine when I should seek expert help. Thankfully, I have a wonderful life. If I did not, I believe it would be necessary to hire a personal assistant simply to have a "normal" person present who could help analyze situations. As it is, coworkers often point out when I am walking unsteadily, trembling, or in some other way seem distressed. It is as if I am unaware of my own physical limitations or what my body is experiencing at any given moment.

Some experts claim that autism is the inability to understand the internal thoughts of others. I wonder if my autistic traits include a failure to understand my own experiences, especially an inability to interpret pain and discomfort.

Academic Discomfort: An Autistic Trait?

2011-10-03T11:52:00.000-07:00

Many of the comments I receive regarding the blog are sent to me directly. For some blog posts, the majority of comments are not posted to this blog, though some might appear on Facebook or via Twitter. I have wondered why some topics lead to fewer public replies. Last night, a question asked concerned my previous post on being uncomfortable among writing and rhetoric professors at a conference.

Did I believe the discomfort was related to autism? Is it an autistic trait to be uncomfortable in some academic situations?

That's a good question. I know my personality and I know what autistic adults told me during my doctoral research: I do fit the stereotype of preferring academic subjects that are "apolitical" and "objective" in nature; the STEM (science, technology, engineering, and math) subjects are comfortable. I'd add to that list business, architecture, film production, and similar fields that stress applied knowledge over theory.

Though I am a writer, and I'd like to believe I'm a decent writer, people focused on fields with "studies" affixed to their disciplines don't think in the same manner I do. I include the soft "social sciences" in the studies group. These fields are often more interested in advocacy politics than rigorous scientific research methods. This is openly admitted in "writing studies" and its related network of disciplines.

At the conference I attended, the "pedagogies" (teaching theories) were "grounded in social justice" and "embrace[d] the pragmatism of Cornel West, Alinsky, and Dewey." I'm sorry, but the "scholars" listed are not scientific, objective thinkers. This approach to teaching embraces a political ideology first, and then seeks to find ways to implement that ideology. That's not educational research in my mind, but instead something entirely different.

I'm not a social conservative, but I do not like the fact an academic discipline is anything but disciplined and rigorous.

Every conference I've attended on writing instruction has had the same deficiency. I've never sat through a presentation or panel that included something like the following statement: "Our methods improved writing and reading comprehension by X based on the standardized measure Y." I have heard statements like this: "My students seemed to like writing more at the end of the semester." One of the stranger things I've heard, "I know my students care more for each other at the end of the writing course." Neither of these conclusions is a quantifiable statement based on rigorous measures.

I want to learn how we can teach writing skills most effectively to students with autism and other different ways of perceiving and relating to the world. My goal is straightforward. After using method X, does a student demonstrate improved writing skills? I can't relate to the goal of teaching "social justice" and "tolerance" in the writing class because I don't think that way. I want to be able to express myself, using words. I assume the parents and students with whom I work want the same thing: the ability to communicate.

When I attend a conference at which at least half of the sessions address practical, evidence-based ways to teach language to students with special needs, then I will be impressed and feel like I'm part of a serious academic discipline. Instead, I've heard about teaching a lot of beliefs to students, and beliefs are not related directly to writing. Politically motivated instruction risks overlooking the role we play in education: preparing students to write.

I had a colleague talk to me about his new writing class. He was excited to include a long list of progressive political theorists in the course. The course was "College Writing and Research" — not "The Progressive Era." I asked him, bluntly, "How do the assignments address writing skills?" He looked at me and said, earnestly, "I'm teaching the students to think. Writing will just happen when they are inspired to call for change."

And we wonder why our disciplines aren't taken seriously? Too many of our students don't learn to write. I know my colleagues would challenge that, but ask employers and their instructors in other disciplines if the writing skills are acceptable.

Maybe it is my "autistic" nature, but I want writing instruction research that is practical. I want to be a better writing teacher. Why can't being a great teacher be the sum total of my "activism" in the classroom? Trust me, knowing how to write will change the lives of my students.

I know I'be more comfortable in a scientific field, but I want to teach writing. So, I have to learn to navigate around the current state of my chosen field. It isn't easy, trust me, because when I ask about instructional methods and research, I'm accused of not caring about social justice. My colleagues have confused their desired outcome (social change) with the best way to achieve that outcome for some student populations (teaching writing skills).

Helping adults with autism realize their goals of independent living and success is my activism. I do that by focusing on skills. No, that's not "critical thinking" that leads to an oddly homogeneous worldview. It is skills and I'm not ashamed to call what I do skills development. Thinking has to be built on a foundation, and my students are still working on that foundation.

Last week, a colleague said, "We should grade thoughts, not writing." But I'm a writing specialist! I need to grade writing to help the student improve his or her writing. I asked how students would improve their writing without grades, which do motivate young adults more than intrinsic idealism does. "Good people think clearly and write better."

I've always taken the opposite view: learning to write, like learning to solve math problems, helps develop clear thought and reasoning skills. Silly me, I believe you learn skills before you can apply the skills creatively. I had to learn the notes and play other people's music before I could improvise on the clarinet. Skills come first.

Maybe I won't last in academia, at least not within a writing or English discipline. Maybe I belong somewhere else that uses more "scientific" methods to test instructional theories. A discipline in which "theory" doesn't mean "critical theory" or "social justice."

I don't know. Clearly, my goals are not exciting and political enough for some in my field.

Two Conferences, Too Different

2011-10-02T23:43:00.000-07:00

A few days ago, someone commented that I looked exhausted. I was asked if this was the results of the ongoing bronchitis battle and the flooding issues with our house. Most people would have agreed or said something simple to dismiss the question. The problem with being exhausted is that I end up answering questions bluntly.

"I'm tired of being around so many people," I answered. "I need some time to recover."

I had attended two conferences, one on Friday and another on Saturday. That meant dealing with people — and trying not to mess up too badly. I'm sure the second conference went poorly, since I was too tired to monitor myself effectively. The first conference, however, went relatively well because I arrived, spoke, and left. That's always the best way for me to deal with situations. Leave before I have to deal with too many one-on-one interactions.

Speaking to a group, as I did on Friday, is relatively easy. I don't have to be polite, because people are listening to me speak. I don't have to know how to deal with the flow of conversation because there is no flow. I speak, the audience listens. When I speak, the reviews are generally positive, even when I don't feel great about the presentation.

But, the second conference, which was an academic conference, was tough. I sat in the back row of the meeting room for presentations, but the luncheon and the reception after the conference required dealing with people and social interactions. Even though I sat alone in the meeting room, people sat on either side of me at the luncheon. Not good.

I am not good at "couching" my statements in the obtuse and polite language of chit-chat. It is best to avoid conversations, but I was too tired to force myself to disengage. It is frustrating that I didn't walk away from people or avoid interpersonal moments. I make that mistake when I am exhausted, and then I compound the mistake by not keeping quiet.

The Friday conference was a gathering of authors. Some of the men and women were openly hostile to formal writing education. I enjoyed the panel I moderated in part because the participants were not afraid to criticize how our schools and universities teach writing. I always find it interesting that popular writers hold writing programs (especially MFA programs) in some disdain. Of course, some MFA programs hold popular fiction in disdain, too.

The Saturday conference? It was a gathering of writing professors and graduate students. I don't belong in the group, no matter what my job is or my title. I enjoyed being among writers, I didn't enjoy time with academics.

I know the professors are smart. I know they are well-intentioned people. I also know I disagree with them on nearly every topic they discussed. The right thing to do is listen silently. Yet, I can't keep my mouth shut when I should. Normal people learn to be silent or to express themselves in ways that aren't entire "honest" in these situations.

Like most people, I want to fit in with my colleagues. I want to be "normal" in academic situations. I want to seem less disagreeable and less annoyed with the views being expressed than I am. I want to sit there, silently if necessary, and not be compelled to speak up on some topics. I want to be able to walk away and recover before I say the wrong things. I don't deal well with the attitudes I encounter at academic conferences. I'm also certain the academics have no idea they are so different from the people I meet at other conferences or within other groups.

Don't get me wrong: I love teaching and I love my university job. I just feel like an outsider much of the time.

I should have skipped the luncheon on Saturday and I should have left immediately after the last presentation. If I hadn't been tired, I would have been able to force myself to leave. It is strange that when I am tired is when I end up engaging with people more than I should. You'd imagine that when I am tired I would want to leave and relax. Instead, my ability to evaluate situations fails and I don't recognize that I need to get away from interactions. Yet, I also know things aren't going well — so I am aware of my failings even though I don't act to remove myself promptly.

Social networking, which is a career skill, is not a skill I possess most of the time. I have to be well-rested and able to mask my personality if I want to make a decent impression on others.

How am I going to coordinate writing programs without too much exposure to academic gatherings? It is going to be difficult, but I do need to develop a strategy for dealing with my colleagues that will not offend them or seem too evasive. I need to be good at this job. That means not being myself, and when I can't control my mind it means not being present at all.

Sale on A Spectrum of Relationships: Autism and Social Connections

2011-10-02T16:52:00.000-07:00

If you haven't purchased A Spectrum of Relationships, this month is a great time to do so. Following the surprise flooding of our home's lower level, we had to spend a bit of money. While I know my little eBook isn't going to cover more than a fraction of the surprise expenses, I figured it couldn't hurt to try a BIG SALE approach to help out a bit.

$0.99 SALE: A Spectrum of Relationships

Kindle Owners, Click for Amazon.
For Nook Users, use Barnes and Noble.

That's right, for less than a dollar you can learn about one autistic adult's experiences with relationships at school, work, and beyond. I offer advice on how to deal with various situations and how friends and family can support an autistic teen or adult struggling with interpersonal relationships.

I'm only going to keep this price for a few weeks, and then the price will return to $2.99 per copy.

I want to thank everyone who has purchased copies of A Spectrum of Relationships over the last few months. We've had some pretty challenging months while moving for my new job and I am forever grateful for how supportive my readers are.

Another Book is Coming
I am working on another book, this time an autobiographical examination of our schools and how they often fail to meet the needs of high-functioning autistics. Because the upcoming work is from my perspective, I cannot address the needs or challenges facing the entire autistic community.

I'll be speaking twice this month on autism and higher education. If you'd like more information on events in the greater Pittsburgh area, please visit the websites of AHEADD and ABOARD.

Autism and Insurance Coverage State Laws

2011-09-30T20:55:00.000-07:00

An update from the National Conference of State Legislatures has been posted to their webpage on insurance mandates by various states. The last change to a state law was posted in May 2011, but several changes will be taking effect in approximately a dozen states in 2012 based on these laws and language in the federal Affordable Care Act:

Autism and Insurance Coverage State Laws: A total of 33 states and the District of Columbia have laws related to autism and insurance coverage. At least 26 states—Arizona, Arkansas, Colorado, Connecticut, Florida, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, Vermont, Virginia, West Virginia and Wisconsin—specifically require insurers to provide coverage for the treatment of autism. Other states may require limited coverage for autism under mental health coverage or other laws.

Some states have passed laws with numerous exemptions, especially for their own state-operated insurance programs meant for families in need. Ironically, the ACA itself seems to allowing states to limit coverage of autism treatments. The reason for this is that the federal government has suggested states only need to offer specific minimums. The states have decided to follow federal minimums. For example, Arkansas amended their insurance law to read:

The law specifies that on or after January 1, 2014, to the extent that these provisions require benefits that exceed the essential health benefits specified under the federal Patient Protection and Affordable Care Act, the benefits that exceed the essential health benefits shall not be required of a health benefit plan when the plan is offered by a health care insurer in the state through the state medical exchange.

Of course, every insurance company will find a way to participate in the exchange markets if this allows the companies to decrease coverage offerings.

Most state employee plans offer coverage that is not mandated of other insurance plans, nor is offered to those enrolled in state supported programs. For example, Iowa's law reads:

Requires state employee health care plans to provide coverage for the diagnosis and treatment of autism spectrum disorders for individuals under 21 years of age.

The diagnosis has to be made by an "appropriate" health care provider. No specific guidelines are offered in the Iowa law, nor are they offered by most states. At least two states' laws mention the "DSM" without specifying the Diagnostic and Statistical Manual Fourth Edition, Revised. I don't know if this means coverage will expand or contract when the DSM V is published. Personally, I have no problem with laws being vague as to the diagnosis source or basis, since "autism" is an evolving diagnosis. I'd rather leave the health care issues to doctors instead of lawyers and legislators.

Read the NCSL updates and follow the links to your individual state's laws. Also, be aware that many insurance policies are set by insurance commissioners and other regulators based on the laws passed by state legislatures. This means that you should contact an insurance expert in your state if you have questions about coverage. There are too many changes between 2011 and 2014 for any person to keep up with them. Also, if court challenges to the ACA are successful, expect states and insurers to reduce various types of coverage, including autism-related insurance coverage.

Personally, I have no idea what to expect between now and 2014 in the courts or at the federal level. Follow the NCSL page, though, and you'll at least be aware of what the laws are at any moment: http://www.ncsl.org/?tabid=18246

Dealing with Minor Disasters

2011-09-27T13:02:00.000-07:00

I've managed pretty well on my own for the last few months, with some complications, but last night was too much for any one person.

For the third time, our basement area took on water. The first two were bad enough, but this was the result of a flash flood, with more than two inches of rain an hour. This morning, you can see the "water line" of debris around the lower level of the house, ranging from four to ten inches. It might be a bit deeper in other spots, but I wasn't going to measure with a ruler.

I spent the entire night using a wet/dry shop vac to remove water from the semi-finished living area of the basement. That's where we have stored boxes of our belongings and large items — like a computer, an entertainment center, my CD/DVD collections, etc. Plus, it is where my books and writings are. My writings include my journals from fourth grade until now. Photo albums, yearbooks, and holiday decorations are all in the basement. Our important documents, are there, too.

Because I've had either a cold or flu and now have bronchitis, I'm not in the best physical shape. I've lost five pounds in three weeks. Yet, there I was, trying my best to move boxes and remove water.

In the end, I couldn't stop all the water and I was in no shape to move large boxes up to the first floor. I tried — and ended up spilling the boxes I did lift.

This wasn't just our house. A nearby street buckled and washed away in sections. A bridge flooded, with people stuck in cars. Thankfully, the local rescue teams were able to retrieve people from the bridge.

I've never seen water like this. You can't stop water from washing away the driveway (which it did) or carrying your garbage can a few hundred yards from the house. Even a wooden walkway that connects our driveway to our backyard washed out of place and struck the house.

This was too much for any one person. I don't care if you are disabled or not, one person cannot handle a flood alone. The shop vac cannot remove that much water and few people can move wet boxes with ease. Trust me, wet boxes fall apart when lifted. I had to call my wife and begged her to take some family leave from work to come out and help me.

I'm overwhelmed with cleanup while also trying to do my job at the university. I'd already lost two weeks to illness before the flooding.

The house will need some serious repairs. We knew some problems would have to be fixed over time. Now, we don't have that time. The driveway has to be replaced, a tree removed, a bulging basement wall repaired, drain pipes replaced, and on and on. If I wasn't already sick from bronchitis, I'd feel sick just looking at the "to-do" list for the home repairs.

During the night, I forgot my keys during one of the water removal cycles. I had to bust in a door, breaking the door jam. My shoulder still hurts. It will be a cheap repair to the door, but I don't think my body will recover quickly. I was standing in two inches of water, shoes and socks soaking wet, and worried about making sure I unplugged the shop vac without getting electrocuted. There is a point at which you can't use an electric device in water and that was the point at which I found myself locked in the shop area.

We don't have flood insurance, yet, but I know we'll be getting it. We live on a hill, out of any flood zone, but clearly that doesn't matter.

My wife will be here tonight. We can start developing a recovery plan. I'm exhausted, though. I'd like to think I could have done more on my own, but sometimes it isn't about being disabled or limited in some way. There are times when nature is simply too much for any person alone.

A Peek Inside Our Dysfunctional Community: The Thinking Person's Guide to Autism

2011-09-24T20:46:00.000-07:00

Apparently being busy with moving, the new job, and severe bronchitis has spared me the annoyance of the ongoing conflicts within the autism "communities." I admit my interactions with some of the people involved in the latest kerfuffles have not been drama-free. I'm not radical enough for some advocates, while some parents have accused me of being too radical. Welcome to the autism community.

However, if you want some insights into the conflicts between adults with ASDs and parent advocates, I suggest you visit The Thinking Person's Guide to Autism. Read the following posts and the comments:

The Thinking Person's Guide to Autism: The Self-Advocate/Parent Dialogues

I concluded some years ago that the autism communities are dysfunctional, but that's not really news to anyone inside the communities. There are "trolls" in all communities, people searching for conflict and people unable to simply ignore comments and posts with which they disagree. We just have some particularly mean trolls — but that's life.

I'm not angry at Autism Speaks, the Autism Society, Generation Rescue, the Autistic Self-Advocacy Network, Aspies for Freedom, or any other group. I'm opposed to some groups, but I don't hate parents or autistics seeking help and support. The only people I am angry with are "doctors" and "experts" shilling snake oil or therapies I consider harmful. Just because I believe some people embrace flawed beliefs (and sometimes junk science), I understand the desire to seek answers.

I wish the parents would listen to the self-advocates. I wish the self-advocates could listen more closely to the parents of the most impaired autistics. I wish parents with ASDs had a greater voice in both communities, to serve as bridges. As an educator with disabilities, I know I wish my colleagues would listen to my first-hand experiences more closely.

I do not have "Autistic Pride" nor do I have any great bitterness about being me. I've written many times that I do not feel "blessed" with my physical disabilities, but I'm not bitter about them, either. Whatever I am today is the result of growing up with my limitations. I feel somewhat sorry for the parents and autistics who have sent me angry emails. They care too much about my opinions and those of other people.

When I wake up, it's usually with a cat or two next to me. That makes most mornings pretty good, even the painful ones. When my wife is with me, life is that much better. If I get a card from my sister or a call from my parents, the day is truly complete. My wife, my family, my pets. Not one of those important aspects of my life depends on my views of autism or disability.

Autism doesn't define me. "Autistic" is merely one small, very small, part of how some people describe me. Sadly, the "trolls" in the community are letting autism define them.

Blogging on Autism for Autistics, Parents, Educators, or...?

2011-09-22T22:33:00.000-07:00

Today I was asked for whom do I write this blog. The individual asking said that I don't write much for autistics, and yet that should be my primary audience. So, was I writing for parents? And if so, which parents?

You'd imagine a writing instructor would have an "audience analysis" ready. Any good author is supposed to know his or her audience, we tell our students. I must have a target in mind when I write… right?

No.

I write whatever comes to mind. This is a blog, a personal reflection on daily life, and I don't pretend that it is a focused work with a consistent rhetorical purpose. Some days, it is a place where I write about science and research. Other days, it is where I record the way I feel about my wife, family, and pets. This blog isn't a planned literary work — it simply happens as it happens.

When I write, I'm not trying to offer my experiences as "the autistic experience" of life. I'm aware that I have limits, but I don't embrace them or celebrate them. I focus on my strengths and try to adapt around (or ignore) my weaknesses. You want to know what it is to be autistic? I can't tell you. I can tell you what is to be me, but even that is only from my perspective. I'm sure my mother and my wife have different perspectives than I do. I am not writing "THE" experience because I know there isn't one experience.

I have simple advice for autistics: you are not anyone else, so don't fall into the trap of embracing too many stereotypes. You are probably not Temple Grandin, Stephen Shore, or any of a dozen well known autistic writers and public speakers. You are not a character in a television show. You are not a checklist in the DSM. You are a person, no more or less likely to agree with me than most other people. I don't get to define you and neither does anyone else.

I have no clear idea of what parents and educators get from this blog, but many seem to read it and comment. I know I've offended plenty of parents with my writings and public statements over the last five years or so.

Parenting is about balance. I know that only as a teacher and a son, not as a parent myself, but I can tell you that I see too many children who were pushed like they were tiny adults and others who were coddled and protected like fine glassware. Sorry, but a child is neither an adult nor a fragile collectable. You have to balance expectations, while accepting that your child will get hurt emotionally and physically at some point in life. Protecting a child from life is impossible and trying to do so only shelters the child from reality.

When I write here, I admit that I fail — and I have had some spectacular failures. I often write so I can reflect on those failures and learn from them. I write for myself in those moments. I'm not writing to teach anyone other than myself. Today a student told me that writing about failure helps other people realize they aren't alone. I like that idea. Maybe it does help when I write that failed at something, but went right back to living.

If I could reach any audience, I'd like to reach educators. I have a lot I'd like to tell teachers and administrators. Some of it would be popular, some of what I would tell educators would be extremely unpopular. I'm more comfortable dealing with education issues because that's supposedly my "expertise" as a university professor and researcher. But, I didn't create this blog with teachers in mind.

I'm going to continue "just writing" on this blog. Most days, this blog is whatever comes to mind, and no planning is involved. If you want a specific topic, feel free to ask (there's a "Ask the Author" link in the menu).

Being Independent Stinks

2011-09-19T17:36:00.000-07:00

August and September have been challenging months, yet they also demonstrate that I can live independently — at least as independently as most other working adults. In the last few months, I've had to deal with more disruption to my schedule and life than I thought I could handle. My wife has visited twice and we talk most nights, but for the most part I've had to settle into the new house and job on my own. I couldn't have done what I have without her support, yet that support has been from a distance.

Having to drive from Minnesota to Pennsylvania in a single day, right after a flight from Las Vegas to Minneapolis, was too much. I was exhausted and near my breaking point the first few days in Western PA. The movers arrived a few days later. I did my best to deal with the commotion and seemed to do okay, all things considered.

My wife's first visit was accompanied by J.C. getting ill. Her second visit ended with her visiting him at the pet hospital. He died only a few days after her visit. The loss of J.C. Kitty was horrible. Yet, somehow, I had to deal with it alone at the time. He couldn't wait for his mother, sadly, so we had to face the end together without her present.

I've had to deal with basement flooding (twice), having trees removed, getting the Jeep registered, obtaining my driver's license, attending formal campus events, new employee orientation, and all the other things a "normal" person has to face when moving for work.

I'm exhausted, definitely, but I have managed to not collapse.

Since Thursday, I've been sick. Not a little, sick, either, but sick enough that I lost another three pounds. I'm almost 190 pounds, down from a peak of 225 during my doctoral defense. I'd rather lose weight by exercising and eating healthier.

Even with being sick, I've still managed to medicate two cats each night. I've done pretty well, though I missed two entire days in bed. Getting up to care for the cats was about all I could do — but I did it because they need me.

Living independently means managing to do what has to be done, from grocery shopping to calling the plumber. It means mowing lawns and cutting fallen branches. Living alone means getting up when the alarms sounds, dressing up, and going to work on time. It means sharing my chicken breast with Alex and Misty — so I don't have to eat alone, at least.

I doubt most people would celebrate two months alone, going to work and managing a house. It isn't about intelligence or skills, it is about the emotional stress of being alone, without someone to fix my mistakes and tell me everything will be okay. I've met some of the smartest people in the world, and a few cannot live alone because they lose track of simple tasks, like buying food or doing laundry. Checklists and reminders only work if you aren't so focused that you forget to look at a calendar.

Doing okay on my own doesn't mean I like it. It would be much better if my wife could be here. I know the cats miss her, too. Still, at least she knows I can manage a basic routine alone. I have to make this work for another few months, and I will.

Personally, I'd rather not do things alone. Independence is nice, but life is better shared.

Twenty Years and We Are Here

2011-09-12T21:59:00.000-07:00

For the first time in many, many years, things feel somewhat "right" in life. Not great, since I'm still dealing with the loss of J.C. Kitty and the stress of missing my wife until she can join us permanently. But, things are better than they have been in almost two decades.

My wife is the most important person in my life, and the last decade has been anything but fair and good to her. Our relationship imploded for a time, in no small part because doctors (of both the medical and mental health variety) had little clue how to address physical and neurological issues. For most of the time we've known each other, I've never felt like I deserved her as a friend, much less as a companion. I wanted her to be happy — and I doubted very much that I could give her the life she deserved.

We've lost a fair amount of time and money trying to earn enough to live. I dreamed of earning enough to "pay her back" for all she did. Instead, we went backwards. A computer store and a bookstore, with other ventures along the way, consumed most of her money, along with money from friends and family. My medical problems also consumed much of her income. I had various jobs, none of them lasting any significant time, and things were looking rather bleak before I finally decided I had to complete a graduate degree to start again.

I realize she could have been far more successful and secure without me holding her back. But, she stuck around even while I was lost and had no idea where or what I should be.

My master's degree was meant to be a path to teaching at the community college level. Somehow, I ended up applying to graduate schools while completing the master's thesis. When I was accepted to the University of Minnesota, I asked her marry me (again) and join me on this confusing journey. I don't know why she said yes, considering how lousy the last few years had been — but she agreed and we moved in the summer of 2006.

Moving to Minnesota seemed like the start of a new life. It didn't quite work out that way. The move to Minneapolis was a huge step and one I still don't know how to evaluate. It was a lousy five years, physically, for me. Without my wife, I probably wouldn't have survived in Minnesota. The university experience was miserable at times and I was exhausted by 2010. I simply wanted to return home to California or another Southwestern state. I wanted to return home, even though home hadn't been a great place for us.

Tonight, I realized I was now where I had hoped to be in 1991, before the computer store or any other misadventures. Since moving from California, we've both completed graduate degrees. I am teaching, which had been my plan back in 1991. We have a house (technically, we have two for now) with a large lot and plenty of room for our books. We have some security, finally, and a vision of what might be ahead of us.

Though it is twenty years later than planned, I can finally give her the life I had dreamed of providing.

No, things are not perfect. We have a house we need to sell. We lost J.C. right after this move. We are truly starting over, financially and emotionally. But I can see where we are heading and I'm confident things will be okay.

When did I realize things were better? When I was sitting at my old desk, with the desk lamp on and my journal open, and I started to write for the first time since Fido Bear passed away in 2007. Before Fido's death, I hadn't written anything in the journals since 2003. Sitting at my desk and writing felt familiar. It was what I had done throughout high school and into college. Yet, for some reason I hadn't written much of anything for myself over the last thirteen or so years.

In thirteen years, I hadn't sketched more than three or four pages. I had written fewer pages in that same time than I wrote in a single sixteen-week semester at USC. When sixteen weeks is more productive than thirteen years, something is definitely wrong. I've struggled, a lot, to regain my confidence and sense of purpose. Tonight, I felt like things were as they should be.

Minnesota never felt like home. I'm not even sure our apartment in California felt like home. This feels like home. It will be complete once my wife is here, but it is already a better life.

I cannot believe we really made it to this point. Wish we had made it a lot sooner, but here we are.

Another Three Weeks

2011-09-11T17:28:00.000-07:00

A couple of hours ago, I drove my wife to the airport. She's returning to our home in Minnesota for a few weeks. Her next visit will likely be at the end of September and last only two or three days. This move has been a challenge, especially as we maintain two houses until the previous one sells.

I don't mind being somewhat alone, and I definitely prefer to be alone in my office on campus when I'm working, but being without my wife is different. She's my guide and my companion. I don't like Minneapolis, but if she's there, that's where my thoughts are.

As I returned home from the airport, a storm rolled into the area with rain, lightning, and wind. It was dark and gloomy — pretty much how I felt on the way home.

Today was a day we remember both first responders and those called to serve in the months and years after September 11, 2001. I can't imagine being in the military and serving for months, even a year or more, away from my family. The families must also feel something like I do without my wife nearby: something is missing, a part of me. A year apart would be miserable.

Typing this, our newest family member, Misty Kitty, is sitting nearby. She lifts her head from time to time and checks to see that I'm nearby. She still hates it when she doesn't know where her people are. I'm glad she loves being with us, and I'm especially glad that she likes to be near me. Tonight, she'll get lots of hugs, as will the other furry kids.

My wife is working to help me get back on schedule. The kids will help me relax, which is scheduled several times throughout the day when I'm home. The schedule is on a little legal pad, sitting on my desk. A legal pad can't take her place while she's away, but it will be a reminder of how much she cares.

Sticking to the Familiar

2011-09-07T18:06:00.000-07:00

My wife is visiting this week, which at least temporarily restores some familiar order to my daily routines. Even before her first visit, I'd already established some routines in and around our new home.

One of the "happy things" about the new home is that I can stick to five major roads for everything from getting to work to shopping for groceries. I don't want to learn more roads, and am in no hurry to memorize new paths to anywhere. I drive down an interstate expressway to work. The same expressway takes me to shopping centers or to the streets on which shopping is located.

I shop for groceries at two stores. In our previous residence, I preferred one store but shopped at several because cities are like that. Living in a rural area, there is one dedicated grocer and a Super Walmart within a few miles of our house. Those two are our choices and I'm content with that. I can memorize two store layouts and develop my routines.

There is one restaurant I really like. I've been there seven times. There's no impulse to try other places — I like it (good Mexican food) and don't know if I will like other places. The reason I went into the restaurant in the first place was that it resembled familiar family-owned restaurants back in California. It looked like the places that were part of my old routines.

Today we tried to go to an unfamiliar area in a nearby county. I didn't like the drive. I'm doubtful I will return often to this new area because the drive was stressful. I'd rather stick to the familiar, the "cookie cutter" strip centers along the interstate expressway that are within miles of the campus where I teach. Maybe when my wife is here, we can explore this other shopping area, but I won't be going alone.

I've done better after moving than I thought I would because I have found the familiar. I shop at the same stores I did in Minnesota and California. Target is Target. Staples is Staples. While I have fond memories of the local businesses of my youth, there is a reason chains have done well: the experience is predictable. McDonald's does well because people know it is roughly the same, restaurant to restaurant.

For me to try new things, I have to first be comfortable. In a year or two, I'm sure I'll experiment more locally. For now, I need my routines.

Meet Misty

2011-09-01T16:33:00.000-07:00

I'd like to introduce Misty.

Since moving, I've been shopping at a PetSmart location near the university. For that entire time (a month and a week or two), Misty has been in the adoption cages. Then, last Saturday, I noticed the employees had removed her tag and were sorting some paperwork in a large white three-ringed binder. I asked if someone had adopted Misty.

No. She had reached her limit with the Humane Society. Misty arrived in April and August was as long as they could give her.

Misty was so calm, quiet, and even "sad" looking that she didn't attract enough attention. She had been turned over to the shelter at the age of two and half, so she isn't a cute little blue-eyed kitten. But she is adorable. She is a beautiful cat, who simply needed a home.

Having had an elderly owner, according to the Humane Society, Misty was accustomed to relaxed, slow moving people. The "spunky" kittens around her in other cages would run up and stick out paws for attention. Misty simply looked "pouty" in the back of her cage. She didn't meow or purr or anything.

Somehow, I knew she was perfect for our household. Pumpkin Kitty and Alex have needed a calm, relaxed friend. Alex misses his brother and PK is so anxious that any calming influence has to be a good thing.

I adopted Misty because it was the right thing for all of us.

While on my path to this teaching post, we lost three of our beloved feline family members. Fido was lost to cancer. We lost Jordan, my little princess, to heart and organ failure. Sadly, J.C. passed away only weeks after the move and I still miss him every night.

Misty is extremely happy to have a new home. She follows me around the house and "head-butts" me for attention. Her little purr motor never stops. At night, she's taken to sleeping next to me. She adores being scratched and loves to play. She needed a person. I cannot imagine what four months in a small cage must have been like for her.

She's adapting quickly to the new house. She runs up and down the hallways and through rooms. It's a lot of space compared to a cage the size of a copier paper box.

This weekend, she gets to meet her new adoptive mom. I know they will love each other.

Have You Tried (X, Y, or Z) for Your Autism?

2011-08-23T15:51:00.000-07:00

I was asked about my diet again, a question that seems to be asked about a third of the time when I discuss autism with groups. This inevitably leads to parents (and some support providers) starting to argue about the various "treatments" such as the gluten free diets or pressure chambers. Yes, I've been asked if I've tried everything from "detox" procedures to special pads you stand on to "drain heavy metals" from your body.

My blunt answer on diets? You do not want to take away my chocolate, processed sugar, and don't even dream of touching my pasta dinners. I'd rather die young than give up my favorite foods. My favorite foods are all "bad" for me, which is why I don't eat pasta or chocolate cake every night.

Caffeine makes me sleepy, as does too much sugar, so my wife is more than content to have me drink a mocha before bedtime. Personally, I prefer to stick to herbal teas with honey or Splenda. I do not get caffeine migraines, unless I'm already dealing with a headache. If I have a headache, I'm wise enough to know not to drink coffee.

I've had speech therapy, physical therapy (most recently in 2006), and educational therapy (ways to deal with reading and writing issues). I've written about my support experiences and I'm openly hostile to most therapies. They are not for me — they actually increase my anxiety and frustration. Physical therapy is about the only support I've found useful, especially for back and shoulder pain.

If you want to try a therapy, as long as it does no harm to your child, I'm not going to stop you. I've written that if you want to try something unsupported by research, I'll defend your right to do so within certain limits. I don't support your right to place a child at physical risk, but I also recognize I'm not going to persuade anyone that there are industries seeking to make money from autism "treatments" with little or no scientific evidence of success.

A few years ago, I met a Ph.D. from a University of California campus. She had a Ph.D. in something related to "holistic medicine" and a master's degree in "Native American Studies." She suggested I hang some odd looking wood and feather mobile above my bed to treat my sensory issues. Because she was a "doctor" parents took her advice seriously. She even suggested natural crystals for some health issues.

You want to buy crystals? My sister works in a store more than happy to sell you all the crystals you might want. They can also schedule an aura reading and tarot consultation. That's okay with me. Unless you are refusing basic medical care and supports for your child, try whatever makes you feel better. You have the right to try dreamcatchers and whatever you want.

The one "therapy" that made me cringe more than any other was bee stings. There is no way, none, that I would ever allow someone to use bee stings on me. How in the world does that treat autism? I already hate stinging insects. I have no desire to try them as a medical treatment. An alternative, offered for sale at a conference, was "special" honey. It looked like a dark honey, like I've seen at the Minnesota State Fair.

Sure, some "alternative" treatments have scientific connections. Bee stings have been found to affect people with some allergies. But that doesn't mean stings will cure autism or depression, two things I've heard at autism conferences.

When I speak, I tell parents I'm not going to recommend any "treatment" for autism. I'm not going to tell you what I believe "THE" treatment might be. I have no idea. What I do know is that someone makes money selling those hyperbaric chambers at autism conferences. Someone is making money selling crystals, too.

I like weighted blankets, but I don't consider them therapy. I like honey, too. I'm sure there are plenty of "non-autistics" who like weighted blankets and honey.

Many parents try everything and anything to help cope with the nature of autism. That's understandable. But, at my age, I'm not interested in experimenting with dozens of "treatments." Don't take that to mean that I don't understand your desire to help or your aim to help your child. I do comprehend that you are willing to try whatever might help your child. That's a normal impulse for parents.

Even if I had all the evidence in the world, I'm not going to convince one parent to stop an alternative therapy. I'm not going to persuade anyone that a diet might not be worth the extra money. All I can say is that nothing I tried really changed who I am or improved my daily experiences.

That's okay. I am what I am… with or without chocolate. So, I'll take the Tiramisu with cocoa after my baked seafood pasta at Little Italy. And then I'll take a nap.

Thank You, Readers

2011-08-22T21:56:00.000-07:00

A nice note from a reader was helpful tonight.

My wife and I have been dealing with a lot this summer. July and August have been too busy and we're both exhausted. I've moved to another state, right after attending a conference for a week in Las Vegas. I had less than a full 24-hours between returning to Minnesota and driving to our new home in Pennsylvania. (And I had endured several minor foot surgeries, right before the Vegas trip and driving. Lots of pain.) Then, after the cats and I arrived, I had to deal with two plumbing emergencies, a home insurance issue, and one of our cats getting ill.

For almost two months, life has been tumultuous, at best. When J.C. passed away a few days ago, it was simply too much for me. I spent a lot of time hugging J.C.'s two brothers, hoping nothing else goes wrong. Alex goes to the vet tomorrow (Tuesday) for an exam because he's been losing weight. I never imagined the boys as anything but a trio, from the day of their birth.

Today I placed J.C.'s collar on Pumpkin. I told him to wear it with pride. I know Pumpkin doesn't understand, but he shredded his collar and needed a new one. It seemed right to pass along the collar to PK. I placed J.C.'s name tag next to Simba's old tag, the one she was wearing when we found her. And I felt myself getting teary-eyed.

Moving and starting a new job meant more space for the kids. More sunny spots and wonderfully large windows from which to see birds — and fireflies. I know I feel better in this house, but it still wasn't supposed to be without J.C. or Jordan. I had promised Jordan a nice sunny spot.

I skipped a faculty gathering this weekend because I didn't want to be around people without my wife. I must admit that one of the meetings I had last week didn't go smoothly; I said what I believe and what I know. I doubt my words were well-received. When I'm tired, I don't self-edit effectively, especially on issues of science and autism. So, I knew it was best to avoid people for a few days.

On Friday, I had to use my cane to keep my balance. It wasn't that my leg hurt, though it did a little, but that my body didn't want to follow my orders. It was like my body wanted to stay in bed and recover from everything. My arm was trembling, something my wife notices by the photos I've taken of the kids. The photos are blurry. When I'm tired, my body doesn't cooperate with my brain.

I'm anxious, and I know that the stresses of moving and starting a new job are affecting me.

This coming Friday, a tree that is damaging the house will be removed. The tree didn't choose to be where it is. The tree had no evil intentions when it started to push the wall inward, causing some minor damage. The tree is probably two decades old, maybe more, but it will now have to go so we — the cats, my wife, and I — can keep the house insured and continue to live here. Still, I feel sorry for the tree, though trees "feel" nothing. Even a tree can make me sad right now.

My support network consists of my wife, my family, and my cats. Cards from my sister have helped a lot this month.

Tonight, as I was getting ready for bed and feeling like I'll never meet my own standards in the new job, someone sent me a note that she had read my blog and bought the book to support what I do. A short note, thanking me for those times when I apparently write something useful for parents and teachers.

My mind hasn't been clear enough to make much progress on the next book, but I'll get back into a routine soon. I have to, because the lack of a routine is adding to my anxiety. I'd like fewer surprises in coming weeks.

Right now, I need to focus. I need to organize my time, stop getting distracted and moody, and get down to work. It would be much easier with my wife here to help, but she needs me to get back on track, too.

I've gotten used to skimming through hate mail, so when someone sends a nice note or a mention on Twitter it surprises me. Maybe I've come to expect the worst when I read my mail; experience has shown that people don't send many nice notes about the blog or my public appearances. When someone does thank me or say something nice, it restores my energy. It seems the nice notes come at the right moments, too. It means a lot to me that someone bought a book simply to show appreciation. At the same time, it makes me feel like the next book has to be much, much better so it won't be a charity purchase.

For now, I simply wanted to acknowledge that nice notes help.

J.C. Kitty

2011-08-19T15:52:00.000-07:00

These are some rough notes from my wife and me, regarding J.C. Kitty.

It was early the morning of May 1, 1995, when Scott heard the cries of kittens from the shrubs under his bedroom window. There was a stray female we called “Momma Kitty” at the apartment complex where we lived; she had given birth during a rainstorm. When Scott checked, there were three tiny kittens. We monitored them for as long as we could, before deciding the bring them inside the apartment to protect them.

While we hadn’t planned on adopting them, we ended up keeping them together. In the early years, Scott would take them outside in his lap to see Momma Kitty. We’d like to think that she understood they were safe and loved.

J.C. Kitty 
Julius Caesar
J.C. was a soft, easy-to-purr, relaxed gentleman. Definitely not the dominating Gaius for whom he was named. His coat was fine and soft, a fluffy and cuddly boy.

When we rescued the boys, J.C. was the first to climb into laps and look for people. One reason we saved the boys was because J.C. was starting to wander from the safety of bushes. He didn’t see any reason to fear people or other animals.

J.C. was a “happy-go-lucky” cat with a purr motor that rarely stopped. You could hear his purr from across a room. He didn’t fear anyone, and would purr for any person willing to show him a little attention. He would even purr for the vet technicians during exams, right until his final weeks.
Nothing, not even traveling from California to Minnesota or from Minnesota to Pennsylvania seemed to upset him. As long as he could look around, J.C. was calm and even happy. J.C. was also one of the most low-key cats we've seen.

A Great Papa Kitty
You might say he was a hero. He was the most “parental” and nurturing cat in our lives. Any cats we rescued, he wanted to play with them and help them. He was gentle and protective of kittens. J.C. was even a blood donor for Simba before she died. He helped her feel a little better before her body failed. J.C. was a great adoptive papa kitty.

J.C. was so laid back that even Pumpkin Kitty was relaxed sharing space with him. It was impossible to feel tense knowing all you had to do was look at J.C. to start up his purr motor. He helped Pumpkin handle the moves, simply by being a good travel companion.

Playful and Active
A very active bundle of energy, J.C. loved “wrestling” and playing until his last few weeks. In his younger years, J.C. was quite the jumper. His favorite game was to try to catch a paper ball being tossed down the hall. We’d sit at each end of a short hallway and toss the ball several feet into the air while J.C. would jump to swat at it. More often than not, he'd manage to swat the ball back at us with his paw. The last time we really played paper ball was in our Bloomington, Minn., apartment. That was in 2006, right after moving to Minnesota for graduate school.

Loved His People
For the last few years, J.C.’s favorite nighttime sleeping spot was sharing a pillow with one of us. He’d climb the stairs onto the bed and amble up to plop down with his front legs and face propped up on a pillow, right up next to one of our faces. He particularly liked it if Sue would hold his paw or if his paw was on top of her hand while she went to sleep listening to a very loud purr motor running next to her head.

J.C. spent his last night sharing a pillow with Scott.

The Final Weeks
The weekend of July 30-31, 2011, J.C. started to drool with spots of blood. We thought he might have chewed a cardboard box or some plastic, a bad habit of his. Sadly, he was diagnosed with oral cancer on August 2 and underwent emergency surgery the next day.

The surgery went well, but the cancer had already spread beyond his mouth. He also was suffering from dehydration and partial kidney failure. The cancer was a particularly fast moving form of oral cancer. Less than two weeks after receiving laser surgery to remove the cancer from his mouth, his drinking slowed and he stopped eating.

He was hospitalized from Monday afternoon, August 15, through Wednesday afternoon to receive IV fluids in an attempt to reverse his dehydration. He seemed perkier after receiving the fluids. Tuesday afternoon he looked a lot better and purred and demanded attention from Sue when she visited him in the hospital. He went home Wednesday afternoon with Scott, but the cancer had caused enough damage to his throat and lungs to create problems breathing overnight. By dawn, he was only semi-conscious and by the time the vet opened on Thursday morning, J.C. was unresponsive and barely breathing.

J.C. passed away at 10:30 a.m. on August 18, 2011. He spent the night next to Scott, sharing a soft blue pillow. J.C. was too tired to drink or eat that morning. Scott held him and talked to him for several hours, knowing J.C. was out of energy — after having been active and happy until those last few weeks.

He will be missed.

Dealing with Loss

2011-08-18T20:28:00.000-07:00

J.C. Kitty passed away this morning, August 18, 2011. I'll write about him in a day or two. This is a very difficult loss, due to his personality and coming shy of a year after the loss of Jordan. J.C. and Jordan were the two most affectionate and playful cats with whom we've shared our lives.

Animals have personalities, and J.C.'s was special. He was 16 years old and will be missed.

http://theautisticme.blogspot.com/2010/10/reflecting-with-jo.html

I miss Jordan almost every day. Our feline kids are family. They have each added to our lives in their own way. Fido, Simba, Jordan, J.C., and many others over the years. Cats and dogs, all of them good friends.

How I Reset from Stress

2011-08-17T17:06:00.000-07:00

One of the questions I am asked at conferences and presentations is how I "reset" from stress or a meltdown. Once my senses are overloaded by sounds, sights, smells, or other sensations, how do I regroup to work the next day? This question also applies to emotional overload — and having a pet going though some tough times is stressful lately.

Here are my coping strategies, in no particular order:

Get away from crowds and people. If I'm in a city, I need to head for a park or out of the city if possible. Cities by their natures have too many inputs. "Normal" people eventually treat the inputs like white noise, but my wife likes to say I have the senses of a hunting dog. I hear and smell everything. In Minneapolis, we'd head for the Landscape Arboretum. It is south of the city about 45 minutes. Sometimes there are a lot of people, but the park is large enough to avoid any crowds.

Now that we live in a rural county, I like to sit on our front porch in the evening. It is quiet and relaxing, especially on clear nights when you can see the stars.

Listen to music. Classical, new age, some "Big Band" era, and soft jazz all help me relax. I also will dig out my clarinet or sit at the keyboard and play (badly) to relax. Music lets me focus on the notes, instead of the world around me. I love patterns, and music is all about following the patterns and rules.

Sit somewhere dimly lit and read. The loss of libraries and bookstores will pose a problem, someday soon. I like to sit and read in quiet spaces when I am stressed. Books are great friends and companions when I'm stressed.

Bake cookies. Yes, cookies reduce stress. How can you eat a warm chocolate chip cookie with milk and be stressed? I love baking because there are so many things to try. We have a lot of books with cookie recipes. When we try something new and it works, we make a note in the cookbook and my wife adds it to our database. When I'm really stressed, I stick to recipes we know work well.

Soak in a warm bath. Sitting in warm water is soothing, especially if my muscles ache. I don't like to soak too long, because the "prune" effect bothers me, but a few minutes can help me regroup. Plus, you feel cleaner and that's a nice thing.

Sit with my cats. Purring cats help reduce stress, unless they are the stress.

Yes, We Judge Others

2011-08-14T17:07:00.000-07:00

One of the simple truths of life: we all judge other people. This is, according to some evolutionary psychologists, a beneficial trait. We judge in an instant in order to preserve ourselves. We see patterns in our experiences and use those to predict new experiences. If I've been attacked by men in blue shirts several times, it makes sense that I might be afraid of men in blue shirts. That's not prejudice — it's caution.

When I wrote about The Mediocre, it was a reflection not only of psychology research — and there has been a fair amount of research on unconsciously mean people — it is also a reflection of experiences with unhappy people. Sadly, there are some very unhappy people online.

Angry, unhappy, discontented people do make me uneasy. And you can tell that some people are "happiest" being angry. Some, but not all of these people, seek out conflict. They can't simply disagree and keep quiet about it. I had a colleague who liked to visit Christian websites and tell believers how stupid they were for having faith in anything. I wonder if the parallel is people who feel compelled to go to some autism community forums to tell the members how ignorant they are? We know people do this in political forums. Why "troll" online to cause fights? I don't understand that impulse.

I used to try to understand and appreciate everyone, but there was a point in the last six years when I realized there are mean people who are either convinced they aren't being mean or are certain their meanness is entirely justified. I'm reminded of fictional villains who are certain someone wronged them, so they turned to crime and destruction in pursuit of "justice."

In autism communities, there is a lot of anger and a lot of stress. There is a sense of being victimized by someone or something. So, people lash out and attack. Some attack science, while others attack segments of the autism community. At some point, I simply cannot accept any justification for the anger and vitriol, even if there was an "original sin" that started the spiral. Someone has to be mature enough to stop feeding the anger. But that's just not human nature.

I don't like many autism therapies or supposed cures, but you won't find me posting to websites and forums associated with those treatments. I'm not going to seek out people to criticize — that's just not helpful. If you don't want my view on those issues, you don't need to read my blog. I'm not seeking to persuade anyone on other websites on any particular point.

Autism has so many unanswered questions that people find their own answers… and stick to them no matter what. Why try to argue these points on other forums? I'm not going to change any views with my "I don't know" and "The evidence is inconclusive" answers. And those answers are likely to only generate more distrust and, sometimes, hate.

A cycle of name-calling and distrust is spiraling out of control in some Internet virtual spaces. People are deciding and declaring who is or isn't "authentic" and attacking others. The anger has shifted from attacks on researchers to attacks on parents, self-advocates, teachers, and even spouses in some instances.

It makes sense that I might avoid some people and groups because some members of those communities have been mean, even threatening, towards me. The Internet makes being rude and threatening easy. Maybe that isn't fair to every member of a group, but it is self-preservation to avoid groups I associate with mean-spirited behaviors.

When someone tells a parent to please control "that retarded kid of yours" — sorry, but I am going to judge that behavior. I also have a right to fear such meanness online. But there is a subtler meanness online in autism forums. It's the meanness that calls some people "shining Aspies" or "inauthentic autistics." Then, these same angry people wonder why some self-advocates are angry and defensive. The self-advocates' anger doesn't help, and it can be a burning anger. Again, that's not all self-advocates — not even the majority — but it is enough that it feeds the cycle.

I do fear what is happening online. I've been told in emails to blow my head off, that I should be killed, and my family has been insulted by some unthinking people. It is often obvious what the biases are of the writers of these emails and posts. Then, I catch myself developing my own deep biases against people and the groups to which they belong.

As I wrote last week, this isn't a unique situation. Autism communities are no more (or less) dysfunctional than other communities. But, when you have a group inherently struggling to communicate and to understand other people, the cycle is much harder to stop.

Writing About Autism: Not for the Autistic??

2011-08-13T09:25:00.000-07:00

An interesting, and disheartening, conversation:

Writing About Autism: Not for the Autistic??

The thread on About.com represents what many of us know about the autism "community" and its coherence: there is no single community, and there is no coherence of purpose, ideals, or beliefs. Insults and attacks are the norm.

Now for the "good" news: this isn't really an "autism" issue at all. If you want proof, read the comments on any political, technical, medical, or even hobbyist website. The vitriol and hatred seems to be universal, not an autism issue.

You want anger? Discuss Windows vs. Linux vs. OS X. Mention your great experience with a Chevy truck on a Ford enthusiast forum. I believe that debate has raged since the 1940s. Even "IRL" (in real life) people attack and insult over silly things. I had someone say, out of the blue, "You drive a Jeep? Really? How can you own such a thing?" I can't recall why it was mentioned — I was simply parking to shop at Target.

What is it with people? From where and why has all this impoliteness appeared in daily life?

We don't merely disagree with people, we allow ourselves to "hate" and "despise" people with different views, values, or beliefs. We can't accept that different views might be honest differences of both opinion and experience.

I do dislike charlatans taking advantage of families and there are men and women I do believe are dishonorable. But not most. I might not agree with a parent's choices, but I do not hate the parent. In fact, I try to understand why the parent is desperate and how desperation, guilt, and misinformation mix to lead to certain choices. The right approach is to explain my views, not insult and yell (virtually or in person).

The "self-advocacy" movement has to be careful. Many adults and teens with ASDs have had challenging experiences and carry with them some anger and bitterness. They need to explain that carefully to the broader autism communities. Not everyone understands how being treated horribly by others can result in a defensive, argumentative stance. Trust me, I understand being angry at institutions and people — but anger doesn't always produce the desired results.

And I tire of some parents and advocates telling me the obvious: I don't understand their lives. No, I don't, but I understand that your anger and vitriol is also harmful, especially when you attack adults and teens with ASDs trying to stand up and explain their experiences.

If you don't like what I write or what anyone else writes online, you can stop reading my blog along with any other websites with which you disagree. What is so difficult about moving on and reading something else? Or, if you are mature and thoughtful, you can read the sites with which you disagree to learn about and appreciate the views expressed. You don't need to post a reply or comment to sites you dislike; you can simply read and observe.

I don't read many blogs or forums. I don't have the time or energy for most of them. I read Stuart Duncan's blog from time to time, but generally I only stumble upon other sites when I see something interesting on Facebook or Google+ that seems worthy of reading. There was a time I read three or four blogs a week, but I don't have the energy for all the anger anymore.

As I mentioned, this isn't merely an autism issue. I no longer read the comments on most news websites, technical sites, or hobby sites. I read the main posts or the news headlines and that's it. One reason I like reading using my iPod Touch is that many sites don't include comments on the mobile devices. No comments means no anger, no hatred.

At least we can't blame "autism" for the lousy attitudes of the online community. "Flame wars" are not only as old as the Internet, but as old as human communication. I can do my best to be polite and not use silly insulting names for groups or people, but even honest disagreements have a way of deteriorating quickly.

Try to be polite. We will all fall short at times, but at least make the effort to listen and consider other views. If you do disagree, try to be nice about it while expressing your viewpoint. That's the least we can do.

AHEADD, Autism, and Higher Ed Supports

2011-08-12T17:09:00.000-07:00

A week ago I travelled into Pittsburgh, PA, to meet with Heather and Paula from AHEADD, an organization that provides additional supports beyond what colleges and universities offer to students with cognitive differences. These were impressive and energetic women dedicated to working with students. Heather earned an MSW from the University of Pittsburgh and Paula has an M.Ed from Ohio University. The sad reality is that many of our colleges and universities do not have such qualified people working with students with ASDs, ADD/ADHD or other neurological challenges.

AHEADD was founded because even great universities cannot meet the perceived needs of some students:

Carolyn Komich Hare founded AHEADD in 2002, when she piloted the program in response to a parent's inquiry regarding the availability of specialized support for her daughter, a student with Asperger's Syndrome who would be returning to Carnegie Mellon University following a year's leave.

AHEADD Provides:
Coaching, Mentoring & Personal Advocacy for College Students with:
Asperger's Syndrome

Attention Deficit Disorder (ADD)

High-Functioning Autism

Dyslexia

Learning Disabilities

Non-Verbal Learning Disability (NVLD)

(http://www.aheadd.org/about.html)

Understand that there are not many students in higher education in need of intensive supports. Realistically, we cannot expect universities to meet the needs of every student, though that might be the ideal. People don't always realize it, but even federal law recognizes that the costs to support a student with special needs must be "reasonable" (and that's not defined in the law) based on the institution, its access to support experts, and its financial resources. Yes, a university can use "We cannot afford to provide supports" as a legal defense in some cases. They have to make a "best effort" but courts get to decide what is a good effort to support a student.

That lack of qualified and intensive supports is why I was interested in learning about AHEADD, which is the leading independent provider of supports in Western PA. As I have written in the past, institutions of higher education are facing budget cuts that often affect disability services (DS), faculty training, and other supports for students with special needs. Many institutions, including ones I have toured in a few states, have created "Residential ASD" programs. However, colleges charge extra for these programs. In some cases, the additional charges are equal to or greater than the fees charged by CLE, AHEADD, and other private fee-for-service organizations.

I now teach at a small private university in PA. Our disability support director is also an instructor in the Dept. of English and the School of Education. Like many faculty at smaller schools, she must "wear many hats." At the large R1 I attended for my doctorate, the situation is not "better" for students, as the DS office has faced cuts and increased case loads for DS advisers. Whether the campus has 3000 students or 50,000, it seems that DS is an obligation they struggle to provide.

Most parents and students I meet don't realize how challenging the higher education setting is, especially in an era of cuts and consolidation within institutions. Colleges and universities are ending degree programs, closing smaller "schools" within universities, and trimming anything deemed "extra" by administrators, donors, and state officials.

If a student needs extra supports, this means private organizations might be the best option. Allow me to provide some information directly from the AHEADD website:

Mission - Individualized and Ongoing Support
Currently, accommodations in higher education lack consideration of characteristics that affect the ability of certain students to achieve their potential. While college accommodation plans provide excellent in-class assistance, students with Learning Disabilities, ASDs, AS, NVLD, and ADD require far more comprehensive, individualized, and ongoing support to address difficulties in the areas of organization, social skills, and communication.

AHEADD's mission is to establish and maintain best practices which fill this void in a manner that respects students as adults, complements the traditional college accommodations plan, and maximizes use of existing campus resources.

As AHEADD grows to meet the needs of a growing number of students across the country, it will continue to set the standard for exemplary support of exceptional students. We also intend to provide this support in consideration of families' financial burden. AHEADD currently charges a fee of $4200 - $5300 per student, per semester.
(http://www.aheadd.org/missionphilosophy.html)

The students I've met in Pennsylvania often pay $18,000 or more annually to attend state universities. Private universities can cost more. In Minnesota, my students often paid more than $14,000 in tuition, fees, and other expenses to attend a state university. I cannot imagine the "sticker shock" when a parent learns supports for a student might add $40,000 or more to the cost of an undergraduate education. I understand why many question the value of the investment. However, I also remind parents that supports developed by a program such as AHEADD might allow the student to receive less supports over time. To attend social skills groups, for example, might cost only a few hundred dollars instead of thousands.
AHEADD, CLE, and similar groups provide supports that address no only academic issues, but also the important social and life skills students with special needs will require for success and independence.

The AHEADD Model of Support Involves Four Core Elements:
1. AHEADD Professional Staff Involvement
2. Development of Campus and Community Support Network
3. Utilization of Campus Resources
4. Peer Mentoring
(http://www.aheadd.org/model.html)

I am not recommending AHEADD, CLE, or any program in particular. What I want students and parents to understand is that our institutions simply do not provide more than the basics required by federal and state regulations. We don't have the resources to provide the best possible supports. Sometimes we do provide enough for students succeed, but I have also met many young men and women who did not complete college or university educations. Some of the students I've met have enrolled in three, four, or even eight different institutions. I personally attempted to complete graduate school at least four times before finding the right mentors and a good environment for me needs.

I did meet with educational psychologists, neurologists, and other specialists along this journey. Such supports are not cheap. They are also emotionally demanding because it is easy to question your own abilities and self-worth when you need help. Being "smart" is not enough to succeed in college or in life. You also need interpersonal skills and social connections to succeed in life.

Without my wife and my family, I could not have completed my master's or doctoral programs. I also needed the help of an educational expert. If you are interested in the team that helped me deal with the university experience, they can be contacted at:

http://www.collegeautismspectrum.com/

Lisa King, M.Ed.
Co-director, Higher Education and Autism Spectrum Disorders, Inc.

Lisa King and her colleagues generally work with colleges and universities to meet the needs of students with ASDs. I do not know if they work with students and families individually, but they do have a book educators, parents, and students should read: Students with Asperger Syndrome: A Guide for College Personnel.

My meeting with AHEADD personnel does lead me to believe their services could help some students and families navigate the higher education experience. Heather informs me that AHEADD does work with families to reduce the out-of-pocket costs for AHEADD services and the organization is establishing scholarship programs. Some students also qualify for partial financial aid from state occupational therapy programs.

One reason I consistently recommend that families consider two-year community colleges and other options is to ease into the college experience. Students with special needs often do best when they start higher-education programs part-time, learning how to deal with professors and large institutions. I have also found that smaller colleges often provide more personalized supports, through unofficial mentoring. Simply having professors know you as an individual can be a big help when you have special needs. Larger institutions can be impersonal and inflexible.

I know high school juniors and seniors are already thinking ahead to college. If you have special needs, you also need to plan for ways to address those.

Settings and Sensory Overload

2011-08-10T19:53:00.000-07:00

The last few weeks have been stressful, dealing with moving, a new job, two pet cats with issues, and all the little complications along the way. Yet, with what is probably more actual stress than I was experiencing only a few months ago, I tend to feel much better about where I am and where we are going as a family.

Why do I feel better?

My simple answer is because I'm not in an urban setting. The most extreme anxiety I've experienced in PA was not when the basement flooded. It was not even waiting to see how JC did during cancer surgery. It was while driving in Pittsburgh. I hated the drive — intensely. I disliked downtown even more than the driving.

Don't misunderstand, I was plenty worried about JC kitty during his surgery exactly a week ago. It was a lousy feeling to be wondering if I should be with him at the vet hospital, just in case something happened. But it wasn't the sort of stress that causes me to freeze and hide away. In fact, I wanted to do whatever I could for JC.

But, sitting in traffic on Liberty in downtown Pittsburgh? I wanted to scream. I wanted to stop the car, get out, and run away to anywhere else. I felt claustrophobic; I was trapped and it seemed as though the buildings had me surrounded.

Pittsburgh is actually worse than Minneapolis. It's an older city, a city that wasn't planned or organized. I dislike the disorder. The crowded, random, messy city is overwhelming.

I can't explain it to someone who hasn't lived or worked in West, but L.A. is organized. Phoenix is organized. Heck, I found my own way around Dallas and its suburbs without any problem. I actually loved Dallas. It was so easy to navigate that I felt relaxed, even in traffic.

There's something different about Pittsburgh or Minneapolis. I'm sure I'd collapse in cities like Boston or New York.

It's hard to explain, but I love Los Angeles. I also can't live there and be healthy. I get exhausted by the sounds, the smells, the general noise and hubbub of cities. Sirens, large diesel engines, exhaust smells, and all the rest are too much for me after a few hours. When I went to school in Los Angeles, I escaped often by driving to the beach or to the local mountains. I needed to get out of the city to decompress. I was out of the city almost every weekend. Not one or two weekends a month, but every weekend.

Our new home is quiet. It is calming. It reminds me of the places I would seek out when I had to decompress years ago. It is like the foothills of California.

Maybe I've found home. That would be nice. It will be even more like home when we all here, together. Then, I'll be even more at ease.

Moving Stinks, Ask Our Cats

2011-08-09T21:32:00.000-07:00

I wouldn't claim that the move to another state has gone smoothly for me or my wife, but it seems to have truly upset the cats more. We worried about that possibility before the move because Pumpkin and Muttley are anxious felines with stressed-out personalities. Pumpkin Kitty (aka PK) is on Prozac and the vet suggested Xanax today. He's not eating well, hiding, and hasn't been in my lap once since the move.

Muttley ate tonight, which was nice, but he still wanders about screaming at the top of his little lungs. He used to cry in the old house, too, especially after Momma went to work each morning. He would be anxious around 4 p.m. when she was due home within the hour. Now, he cries and she doesn't arrive.

JC was diagnosed with cancer the day Momma had to return to her job in another state. He had surgery the next day and seems to be doing well, all things considered. He is eating a little and drinking water. I'm sure his tough time isn't helping PK or Muttley. JC smells a little different after the surgery, which the vet says is normal because he isn't eating as much or drinking enough water. By next week, JC might be closer to normal.

Our kids are more important to me than any of the house issues — and there have been several serious issues during this move. We have some issues that are significant, but a house is not our kids. A house can be repaired, minor things fixed over time, and any paperwork issues are easy enough to address in time. I don't care as much about the house as I do our feline family members.

My work is suffering because I worry about the cats. I can't focus right now on my new job or any current projects. That's starting to worry me with deadlines approaching.

Momma will be here this weekend. I'm hoping that helps the kids reset so they can be calm for a few days.

I really miss my wife, too. She keeps the cats and me calmer.

Thoughts on Back to School

2011-08-02T19:27:00.000-07:00

When I was young, I disliked summer because it wasn't as routine as the school year. I dislike school much of the time, too, but it was a (somewhat) predictable setting. Best of all, school meant books with facts and more information to learn. Since becoming a more active special education advocate, I've met many children and adults who love memorizing specific facts but don't (or didn't) enjoy their classroom experiences.

How can you make back to school less stressful? What are some suggestions to ease the annual ritual?

I begin each year with a tour of my campus. In college, I always arrived early and walked around the campus. I did this year after year, because I needed to ease myself into the campus routines. I even did this in high school, walking about the empty campus before it was crowded with unruly students. I've meandered about the campus where I am now a professor and will visit several more times before the first day of classes.

It might help other students to explore campus, with a parent or guardian, before classes begin. I'd recommend this for students from elementary school to university graduate students. The familiar is less stressful.

Next, I would contact any teachers or instructors available and willing to discuss the semester or year ahead. I would ask that parents do this for K12 students; some states and schools discourage direct correspondence with students. (It's actually illegal in at least one state to "friend" a student via social networks!) For university students, the best approach is to contact instructors with the assistance of the disability services office.

In the K12 setting, families need to be thinking about revised Individualized Education Programs (IEPs) from the end of one school year to the beginning of the next. I recommend a list of what has been accomplished, which goals were not met / mastered, and which issues are immediate concerns for the student's success. Knowing which goals were not met can help a teacher plan for the coming year — and you should never think of these as "failures." If a teacher doesn't anticipate both strengths and weaknesses, the teacher can't help the student stay on track.

Food can be a struggle with any young student, and I'm picky about food as an adult. Allergies complicate this for some families, as well as any special diets. K12 districts and university dining services can provide sample menus. K12 districts are required to make accommodations for safety and reasonable health concerns. Higher education institutions do not make the same allowances, though most now offer vegetarian menus and other special dietary menus. Most colleges and universities have "food courts" similar to those in shopping malls. If I do eat on campus, I stick to what I know is okay.

It might not be logical, but I insist on the same notebooks, mechanical pencils, and ink pens year after year. I do not like other brands and losing my favorite mechanical pencils causes anxiety. Maybe your student also has preferences for specific school supplies. Brands of crayons and pencils are not the same. Don't be surprised if a student insists on his or her favorites. Instructors should be tolerant of such preferences. Why does it matter if a student wants black ink instead of blue or likes college-ruled bright white notebooks?

I use wall calendars and charts to help plan for school and throughout the school year. I need lots of charts, because I think visually. Having the plans for the year ahead on the wall weeks in advance is a good way to ease into the school year, too. I've been looking at the academic calendar for 2011-12 since June. Yes, that's obsessive, but I hate surprises. Knowing the future plans helps keep me relaxed.

During the school year, I have printed calendars in every binder. I keep a single "master calendar" so I don't mixup dates or schedule two events for the same day. Calendars are essential to my functioning well. I never put the work related to two courses in one binder — I keep every topic separate, and the master calendar is in its own portfolio.

The calendar I keep is printed from iCal on my home computer. Any time I change the calendar, I print the new version and replace the old in my master binder. Yes, that's a lot of work, but I need that planning. When I talk to parents and students, I hear a similar desire for order and routines.

School seldom goes smoothly, so the single best thing a family can do is let the student in their lives know there is a place to find support. Knowing my parents were there for me, no matter how lousy the school day, was one of things that made it possible to succeed.

Families of special needs children know that every single day at school is a step forward, but not an easy step. Preparing for school lasts from one year to the next. During the school year, you have to keep in contact with schools as much as possible.

At the university level, your student will be on his or her own. Privacy laws that recognize adulthood can prevent a parent or guardian from working with instructors — unless the student files a written consent for the parent to be involved in disability services. Preparing for adulthood and self-advocacy has to begin during the K12 years.

To be a self-advocate, students should be involved in IEP meetings and back-to-school planning. Family members and teachers need to listen to the student and help him or her develop a sense of control. It is important for students with special needs to be as active in their own futures as possible.

Back-to-school means another year of changes. It should also be another year preparing for adulthood.

Higher Education and Supports for Autistic Students

2011-08-01T17:34:00.000-07:00

Based on comments several months ago to this blog, I spent a few "extra" hours this summer contacting college and university offices that serve students with special needs. The names of these offices vary, from Disability Services to Disabled Student Support, but regardless of what an institutions calls "Disability Services" it was easy to locate and contact the directors, managers, or coordinators of these programs. A few heads of DS also carry the title "professor" and teach within academic departments in addition to their other duties.

My motivation was personal, since I research students with ASDs and higher education. The more I know about students receiving supports, the better. But, it turns out that as my doctoral study data suggests, not many students with ASDs have sought disability supports.

Most of the leaders of these programs have worked in disability services for many years. For example, the director of the Resource Office on Disabilities at Yale University has worked in disability services for nearly a dozen years. The employees I corresponded within the California State University system (CSU) each had more than ten years of experience in student supports. I sent questions to CalTech, a couple of University of California campuses, the University of Southern California, Carnegie Mellon, and Robert Morris University, where I am employed. I have personal experience with the DS services at CSU Fresno, the University of Minnesota, and Robert Morris. I've also worked with staff and faculty at institutions in Texas, Florida, and Arizona.

The questions I asked were limited to autism spectrum disorders. Roughly, the questions were:

1) What documentation is required to apply for and/or receive supports?

2) Do you have any students with ASD diagnoses currently receiving supports, or have you had such students in the past?

3) What services are typically provided to students with ASDs?

4) Is there any training for faculty and staff related to students with ASDs?

The first question was consistently answered with an important qualifier for parents and student. Not one university or college accepted "educational diagnoses" offered in some states by school psychologists or other school employees. Self-diagnoses are never accepted when seeking supports. Every institution requires a recent (which varied from 18 months to four years) assessment by a clinical psychologist, psychiatrist, neurologist, or medical doctor. If the assessment was by any licensed health care professional, it was considered valid. A CSU support expert explained that the university where he works accepts any clinician's diagnoses because that is the easiest, safest, legal approach to compliance with ADA and Section 504/508.

In all but two cases, only a letter from a licensed clinician was required. The other two did not elaborate. These were state universities in two different states and might have other paperwork requirements, but I do not know and cannot state with any certainty what they require.

The second question was more surprising. Yale's director of DS indicated only a few students in the last decade had requested supports related to an ASD. Several university DS experts replied that they had never been asked to develop a support plan for a student with an ASD. That was surprising to me, but I discovered only one university support person, at a Midwest state university, could recall working with more than four students diagnosed with ASDs.

From CalTech to Yale, the DS experts said they welcomed students with any diagnosed special needs, but that students simply don't seem to seek out supports. Maybe this is particularly true of ASDs?

It does turn out that UCLA has (or had?) an active Autistic Self-Advocacy Network (ASAN) chapter. This group has hosted events on campus and seeks to improve awareness of ASDs. Autistic students run the organization, which is not associated with the DS offices at UCLA.

I received only vague answers to the third question, which is to be expected. Every student with special needs is different and there are no "typical" services for students with ASDs.

Finally, most campuses did not provide training to faculty. Some encouraged staff and faculty to attend local conferences or events. Until there are more students with ASDs in higher education seeking institutional supports, the DS offices must focus on other special needs.

Carnegie Mellon referred me to AHEADD and the Cal State campuses in the S.F. Bay Area referred me to CLE for additional information on supports for students with ASDs.

AHEADD's website reads:

AHEADD (Achieving in Higher Education with Autism/Developmental Disabilities) is a private, community organization that provides support for students in higher education with:
Learning Disabilities
High-Functioning Autism (HFA)
Asperger's Syndrome (AS)
Non-Verbal Learning Disorder (NVLD)
Attention Deficit Disorder (ADD)
Originally developed in cooperation with Equal Opportunity Services of Carnegie Mellon University, AHEADD is specifically designed to address students' inherent social, communication, and organizational issues, and helps students develop individualized strategies to manage their college careers independently.
http://www.aheadd.org/about.html.

CLE, with offices nationally, provides the following information:

Finding the right college program for students with autism spectrum disorders, Asperger's, nonverbal learning disorder, ADD/ADHD and other learning disabilities is vital for a college student's transition into independent adulthood. The right program should provide support for each student's unique needs and goals.

With the help of College Living Experience (CLE), young adults with learning disabilities are experiencing independence as college students. College Living Experience helps special needs students attend universities, community colleges, and technical and vocational schools near one of the five CLE locations across the country.
http://www.experiencecle.com/home.aspx

I've met with CLE representatives and must admit that the costs concern me. The CLE centers are in Austin, Costa Mesa, Ft. Lauderdale, Denver, Monterey, and Washington, D.C. The locations serve students at multiple colleges and universities. For example, the Costa Mesa center supports students at several community colleges, CSU Long Beach, CSU Fullerton, and UC Irvine.

Both AHEADD and CLE have a limited number of service centers. These centers do work with colleges and universities to provide supports for students with ASDs. I am meeting with AHEADD representatives later this week to learn more about their programs. I have noticed there are AHEADD programs at California State University, Bakersfield. I did not expect to find an autism support center at CSUB, but that's a great thing to know as a Central Valley native.

I'll write about AHEADD after I meet with their support experts this week. This is strictly my initial impression, but it seems that private organizations are working more directly with autistic students.

I'm unable to explain why universities might not be encountering more students seeking supports. Maybe parents and students will offer insights in coming months.

Who Are 'The Mediocre' People?

2011-07-28T07:47:00.000-07:00

In a post that was a private reflection, moved off the main page, I mentioned "the mediocre people." I've been pondering this concept and believe it needs some clarification that might be of interest to most of my readers.

The Mediocre are not defined by their education levels, incomes, faiths, political beliefs, genders, races, or any number of other categories.

Oxford American Dictionary: 1. of only ordinary or moderate quality; neither good nor bad; barely adequate. 2. rather poor or inferior.
Merriam-Webster: moderate or low, poor quality. Of a poor to middling character.

What is "poor character" to me? It means you are not a role model. It means you aren't one of the good or great people. Maybe The Mediocre don't try. Maybe they don't care. But they are what they are.

Most of the good and great people I know are from humble backgrounds. They are farmers, nurses, librarians, police officers, farm workers, mechanics, and many other professions. They are gay and straight. They are Christians, Jews, Muslims, atheists, and at least a half-dozen other faiths. They have college degrees and some have not completed high school. They can be rich, poor, middle-class, or whatever else you might call an income level.

You might consider the good and great people "average" but I consider them much more than that. The good people do all they can to help their neighbors and their communities. They listen and try to understand what other people might need to succeed.

My parents don't have college educations. They've struggled at times, financially, but they've always given to others. They both work with people needing assistance. My mother is a teacher's aide and my father was a nurse. These are my role models. Good people. Not perfect people, not "above average" by most standards, but special people because they have the best intentions most of the time.

Sure, good people make mistakes. But good people try to set things right.

Being one of The Mediocre is purely a reflection of how you treat other people. The Mediocre are:

Convinced "tolerance" and "diversity" are somebody else's problem.
Certain they themselves are accepting and tolerance, of course.
Afraid of anyone too "odd" or "strange" or "different" from their experiences.
Searching for reasons to be angry at "the others" (and "other" varies).
Seeking praise and accolades instead of doing what's right because it is right.
Unaware of when they hurt other people, intentionally or unintentionally.
Unwilling to apologize without deflecting and crafting excuses.
Endowed with a sense of entitlement and superiority.

I've met evil people. These were sociopaths, pedophiles, drug dealers, thieves, frauds, and cheats. These are not The Mediocre, because many of the evil seem to take pride in breaking laws or hurting people.

Evil people are easy to fire from a job or expel from a school. Mediocre people are hard to dismiss from our lives. The Mediocre are simply those people we can't seem to avoid. The Mediocre are, I would like to imagine, a small 10 to 20 percent of people. At least I'd like to imagine it is merely a few making our workplaces, schools, and other places miserable.

Parents of special needs children meet The Mediocre too often. It is the man or woman asking why you can't control your child. It is the person on the train you ask to turn down the music and he or she then increases the volume, to your child's distress. It is the teacher or doctor who talks down to the parent or individual with special needs. It is the school board member or principal unwilling to listen to parent complaints about poor support programs.

Sadly, we often have little recourse when dealing with The Mediocre.

But, don't forget that there are many more good and great people in our lives.

Out and About, Alone

2011-07-27T20:55:00.000-07:00

In the last week, I've managed to go to lunch or dinner four times by myself. That might not seem like a big deal to most people, but it can be a challenge for me to go to new places with my wife, much less by myself.

I don't like noise, unusual sounds, some smells, and crowds. So how did I manage to go out and actually enjoy it?

First, I went to places within a mile or so of our house. If I felt stressed, I could always head home quickly and I wasn't so far away as to worry about getting lost in a state of panic.

Second, I went to eat at times before the "rush" crowds. I ate lunch at 11:30, when most places start service yet most customers haven't arrived. I ate dinner at 4:30, with the same logic in mind.

Third, I asked to sit facing the door and windows. This helps me avoid feeling trapped.

I ate at an Asian buffet, a little Italian place (with an odd menu mix that strayed far from what I consider Italian), a regional chain diner, and a Mexican restaurant located in a strip center.

The clear winner in my mind was the Mexican restaurant. It was quiet, the TV was muted, and most of the diners were elderly locals. The food was wonderful, especially the rice. Perfect rice is no small achievement. The waiter was attentive, without being too attentive. He refilled my tea constantly, which is key to a good tip from me.

The Italian place was too noisy, even though it was before the dinner hour. The music was a bit loud for me and the patrons present spoke loudly to be heard over Sinatra and Dino. Still, the food… amazing. I boxed most of my meal, and learned they offer a to-go option. Wonderful food, but I'd have to go back on a quieter day. My mistake was eating out on a Friday afternoon, I believe.

Diners and buffets are what they are. The diner was entertaining because the waitresses and hostess seemed to know everyone walking through the door. I might have been the only person to ask for a menu.

I was tense everywhere but the Mexican restaurant. It is a place I will visit in the future. It reminds me of home.

The reality is that shopping, eating, and even working without friends and family around is difficult for many people. It worries me because there's no one here to help when I can't deal with a situation. It's not exciting, as some of my friends have suggested. It is anxiety-inducing. But, I seem to have done much better after a rough first night or two in our new house.

Some readers might think it is silly for a successful adult to worry about eating alone. But, I know that parents of autistic and other special children will understand. I find myself waiting for that "one thing" that will be too much for my senses. I worry throughout most meals. I hate the tension.

But, I managed. And I found a place where I feel welcomed and safe.

The State of Learning Disabilities

2011-07-27T11:01:00.000-07:00

The State of Learning Disabilities

The National Center for Learning Disabilities has published a survey that includes the following data:

The U.S. Survey of Income and Program Participation survey shows the LD prevalence rate among the U.S. population (ages 6 and older) to be 1.8%, totaling 4.67 million Americans.
Males are much more likely to have acknowledged learning disabilities than females.
The unemployment rate for those with LD was twice that of those without LD.
There are major disconnects between high school and postsecondary education which create obstacles for students with LD.
Often students with LD have lower aspirations regarding their own postsecondary education.
Just under 11% of undergraduates reported having some type of disability.
Only 46% of students with a LD found paid employment, full or part-time, within two years of leaving school.

I've read various estimates, indicating anywhere from 17% to 30% of adults with autism spectrum disorders find regular employment. Unfortunately, "regular" employment is not always full-time and it is often far-below the normal employment position held by similarly educated individuals within the general population. ASDs and other cognitive differences result in lower life-time earnings, even among those with Asperger's Syndrome, High-Functioning Autism, or PDD-NOS who do complete high school and a two-year degree program. Within higher education, the Chronicle of Higher Education has reported professors with ASDs are also less likely to be full-time tenure-track faculty.

Inadvertent Disclosure of Autism

2011-07-24T22:32:00.000-07:00

Inadvertent disclosure happens, I was reminded tonight. Because I've been on the road, I've been using several email accounts, usually based on which "webmail" solution was working best. What I forgot was that my Yahoo account was being used primarily for autism mailing lists and groups, not for anything else. So, by using my Yahoo email, the signature with links to this blog was included.

Now, a mailing list that has nothing to do with autism has links to this blog. An interesting question arises, and one I'm not sure how to address — or if it is worth addressing. I do know that at least two people followed the link from my email to the blog, but no idea which two. That does matter, since some people are more understanding than others.

I believe most of the men and women on that list would understand traumatic brain injuries, such as occurred at my birth, along with the other injuries that might (and only might) contribute to the traits categorized as HFA. Other people aren't likely to be so understanding. The notion that an "autistic" person is amongst them might be disconcerting.

Then again, my seizures, palsy, dystrophy, and so on, can and have offended various people. Shaking and trembling bothers some people. My blunt honesty bothers others. Of course, seizures are just plain annoying, even from my perspective. The point is that some people will never appreciate that some of us are not and will never be typical.

During college, I started putting my paralyzed right hand in my pocket about that time, as if I could hide that it didn't work properly. I'd stand with my hands behind me during the national anthem or pledge, so no one could tell I couldn't place my hand over my heart without great effort and pain. I didn't talk about being in a plastic back and body brace for six years. I didn't want anyone to know I was "damaged" in any manner.

Several friends joined the military. I envied them. My medical records? No way was I going to be allowed to serve in any institution that needs men and women in good physical shape. And so, even as the least likely people from high school joined the armed forces, law enforcement, or public safety institutions, I was left to sit and write or program computers.

I still try to hide, though I probably should be over any fear of being rejected as different. In a group of programmers, I want to be another programmer. In a group of writers, I want to be another writer. In a group of autism researchers… I have no idea what I want to be.

Last week I met a lot of brave men and women. And yet, I'm still cowardly when it comes to discussing my complex physical existence. These men and women faced life and death situations, by choice. I've only faced death as an unwilling traveling companion through life.

A few years ago, something called a hemoglobin level dropped dangerously low and I needed two blood transfusions during the Christmas holiday. When I returned to classes, I only told my adviser. I didn't want anyone else to know I had been hospitalized in the ER on Christmas Eve.

I actually taught within a day or two of eye surgeries, necessitated by my base membrane dystrophy. I didn't want anyone to think I couldn't do the job.

In the end, that's not about being strong. It is about being afraid, being a coward. Even now, I'm afraid of what people think of me when they learn I was considered "mentally retarded" by doctors following my birth. I'm afraid of what people will think then they learn I'm a thousand broken pieces, held together by determination and a lot of denial.

Being on the road, I never thought my email could lead to disclosure of my medical issues. Mistakes happen, and this was definitely one of them. Maybe nobody will comment. I have to believe whoever followed the link in my Yahoo signature (which I have since changed) was at least a little surprised.

No comments will allow me to continue pretending no one from the other "communities" in my life knows I'm also The Autistic Me. Denial at work.

The "Aspie" Nature of Anxious Cats

2011-07-24T21:33:00.000-07:00

There is a book entitled All Cats Have Aspergers Syndrome. I definitely know our cats have not dealt well with the disruptions associated with moving. One of our cats, Pumpkin Kitty, is so anxious that he's on Prozac for kitties. He struggles even in familiar settings, but moving has been a nightmare for our little boy.

He's been hiding in dark spaces, from the tubs to behind doors. He loves to hide in the closets of the new house, too. He does not want to wander the hallways and discover new places, like the other cats are doing. He wants things the way they were.

Actually, I think he'd be happier all the way back in California, though he wasn't at ease there, either. Something about each move seems a bit harder on the poor guy. This move is it, though. We're going to try to stay in this new location for the rest of our kids' lives and up to our retirements. I'm in no rush to move again, either.

We have had cats that only ate one brand of food. We've had people cats, and we've had cats with no desire to meet strangers. We've had adventurous cats, and we've had skittish cats. We've had cats who preferred one or the other of us, at least when given the choice. Cats are loyal, on their terms. Pumpkin is my wife's little boy. He misses her a lot, and I'm sure he'll feel better once she arrives later this week.

Cats like routines. They seem to like order, too. Change? They don't like change at all.

At least our kids are all together, in their new home. It will take some time, but I'm sure they will adapt. Probably sooner than I will.

Update: PK started ramming into walls and windows at full-speed, trying to break free from his new home. To him, this isn't home. It isn't where "Mom" is (yet) and it can't be where he belongs. I'm feeling very sorry for the little guy.

I tried to check on him. I ended up bleeding. It's too bad I can't speak cat.

Experts critique statistics, conclusion of autism twin study - News & Commentary - Simons Foundation Autism Research Initiative (SFARI)

2011-07-18T08:15:00.000-07:00

Experts critique statistics, conclusion of autism twin study - News & Commentary - Simons Foundation Autism Research Initiative (SFARI):

"For example, in March, Shiva Singh's group at the University of Western Ontario analyzed the genomes of identical twins among whom only one twin has schizophrenia. Singh's team found that identical twins carry different spontaneous genetic mutations."

It is difficult for many laypeople, and even some with science backgrounds, to accept that "genetic" does not mean hereditary. I've written about this several times. Genes mutate during development of the fetus. During the first six to eight stages of development, minor errors in replication can affect all future development. Changing one cell among millions isn't so bad. Changing one cell among hundreds? That leads to potentially serious spontaneous genetic replication ("copy number variant") errors.

On the Road

2011-07-18T07:16:00.000-07:00

I haven't been able to blog this week and might not have much time until next week. I'm on the road, with my wife "holding down the fort" (and the cats) while I'm away. I'll only be home with her for less than 24 hours and then I'm on the road again.

I'm exhausted and that's never a good thing. Last night I hit my breaking point. Thankfully, I left the conference hotel three hours before my flight so I could sit here in the airport and relax. Yes, the airport with all its sounds, smells, and vibrations is a better place than the hotel was. Here, I can sit and decompress before the flight.

Last night was one of those nights when I was "so over" people, as a friend says. I just wanted to sit in the hotel room and watch "In Plain Sight" and "White Collar." People can be very annoying, especially when they've had drinks.

After putting up with the mean-spirited nonsense of someone important for long enough, I quickly departed the hotel restaurant for my room. I get sick and tired to how mean and intolerant people can be. They justify this by calling anyone with whom they disagree evil, dangerous, ignorant, etc. I get sick of it.

If you don't agree with the views of the majority of people at a conference, don't be there. I wouldn't attend some conferences because they don't represent what I consider to be sound science, public service, or positive advocacy. But if someone else wants to attend a conference, that's fine. Don't go to a group with whom you disagree if you know you'll be secretly (or not so secretly) seething with anger. What's the point?

Anyway, I'm glad to be getting on the road (in the air) and can't wait to have some time alone with the cats. I need that.

Adults with Autism: My Big Challenge

2011-07-18T01:50:00.000-07:00

I have posted a follow-up to clarify "The Mediocre" for myself and others. See "Who Are The Mediocre People?"

The essence of the latest "Ask a Question" submission:

What has been the biggest challenge for you in the adult life?

http://theautisticme.blogspot.com/p/ask-question.html

I've had a few weeks to ponder this, but a recent incident comes to mind and I think it encapsulates the greatest challenge from my perspective.

There are bullies in adulthood. They try to ruin you to make themselves feel better.

Bullies are those people who don't want to understand my challenges or anyone else's challenges. They want to dismiss me as "strange" or "weird" and ignore any responsibility they might have for creating overwhelming situations. People can be mean, pushy, aggressive, and generally rude. Such attitudes exhaust me. Eventually, the rude person wins, and I have to leave the situation. I can't handle pushy people, yet many people are pushy.

Dealing with the best of people isn't easy for me. Dealing with the mediocre bullies, who are all-too common, is nearly impossible. At least the evil are evil, period. Most adult bullies we encounter in the workplace, school, or in organizations are something else. They aren't evil, but their effects can be.

Those pushy people convinced they are right and you are wrong about everything are the ones I cannot understand. These people stand behind you at the self-checkout line in the grocery store, sighing loudly because they are "too polite" to yell outright that you're too slow. These mediocre people talk behind your back, because they're "too polite" to argue or make claims to your face. What is most annoying about mediocre people is that they believe they are the best of best.

I don't understand most things people do, socially, but I really don't understand tearing down other people to make yourself feel good.

I met someone this week who "jokingly" insisted other people call her "The Queen" of an organization. That's not funny, nor was her attitude towards other people. Someone should remind her the Queen of Hearts loses in the original Lewis Carroll stories. Pride leads to an eventual fall from power.

During the same trip, I met another person who insisted a waiter, yes a waiter, address her as "Doctor." Get over yourself. You aren't better than that waiter. If anything that poor young man has to deal with all manner of jerk during his shift. He was a good waiter, in my opinion, and didn't need to be told what to call a customer. An outright bad person would have been less offensive to me than the mediocre person trying to pump up her own ego.

UPDATE (2011-Jul-28): The doctor involved sent me a note explaining her experiences. I owe her this clarification and an admission that I hadn't thought about how much things have changed. It wasn't that long ago that women in health care were not treated with respect. To be a woman Dr. of any sort was rare. A female doctor was still referred to as "Mrs. X" instead of as "Dr." in many formal and social situations. People called men by their formal titles, but not always women. My generation is far less formal, overall, something I attribute to social media. I can't recall any professor using the title "Dr." and many of my physicians use their first names. Times have changed, but it was wrong of me to forget the past.

Mediocre people don't always intend to be mean, self-centered, bullies. I wonder if insecurities are to blame. I have no idea. These people don't realize they're being mean. When they are told they are being jerks, they can and do honestly deny meaning any harm.

These mediocre people don't get it when a waiter no longer smiles, or when people no longer believe it is funny to shout "Off with her head!" during meetings. Mediocre people don't have a clue how mean they are, because they can't imagine they are anything other than perfect.

Self-important people don't ask what's wrong when you start shaking. They don't wait for an explanation when you are trying to say the lights or sounds are giving you a headache. The mediocre not only cannot appreciate your special needs, but they dismiss your challenges as being imagined or the latest trend. They can't imagine you really have a cognitive challenge. You can't be autistic. You can't have a learning disability. The only way the mediocre admit to your challenge is if the mediocre get to offer you advice and "help" you.

I tried to explain to one of the mediocre people that I have some serious medical issues. How did she respond? She posted to a listserv that I stormed out from a dinner and exhibited "strange behavior." She didn't hear a word I said about seizures, palsy, or anything else. She made up her mind to dislike me because I wasn't perfect like her. I didn't know she was brilliant, which would have proven my brilliance in her mind.

Those people, and there are too many of them, are the challenge of daily life. They are the middle managers (our bosses in many cases). They are the customers who "know" how to use the computer and try to tell you how to solve the problem — the problem they called tech support to solve. They are the parents of "geniuses" who threaten to file a complaint because their perfect child does "B" or even "C" work.

People aren't all mediocre, but a great many self-important people are. If you don't play along with their self-image, they can and will try to damage your reputation. I've had professors, doctors, and lawyers try to play the "I'm important and you're not" role.

I try very hard to be a good, decent person. I sometimes fall short. But at least I know I'm not better than anyone else. I don't feel entitled to anything. I believe I have a responsibility to help other people when I can, and they owe me nothing for choices made and actions taken.

If I were a better person, I wouldn't let the mediocre people ruin my days. But, they do.

My wife says this is the simple summation of the challenge I'm describing: There are bullies we will encounter throughout life. Bullies are all ages, and they always have a rationalization for being jerks.

I can't deal with bullies, but I sure meet a lot of them.

Book Excerpt: The Autism Assessment, Part 3

2011-07-12T13:36:00.000-07:00

Okay, here's the last bit I'm going to share online from my 2006 "re-assessment" that was requested for the University of Minnesota Graduate School. Remember you are reading an excerpt from my upcoming book, not the full chapter. However, your questions and suggestions will help me craft a better book.

And yes, I am still reminding visitors that my book A Spectrum of Relationships is available from the two biggest online bookstores for $2.99. I appreciate how supportive readers of this blog have been.

Dealing with the Assessment (and Some Denial)

The Doctors Conclude…

Neuropsychologically, S. presents with a complex history, driven by significant physical trauma at birth. He does have a seizure disorder (which is treated medically). Imaging reveals specific left frontal and temporal lobe injury. A progressive neurological disorder is not ruled out. Characteristics of high-functioning autism, resulting from the brain trauma, are apparent.

I’ve had a few scans of my brain, along with the unpleasantness that was two EEG (electroencephalography) tests for seizure disorders. It takes almost an hour to place the electrodes for the EEG, which also requires an immediate shower afterwards. The scans are at least done without the mess, though I won’t argue that the claustrophobic tubes are enjoyable. The last two scans did include classical music, which was interesting.

Some of the imaging and EEG tests have shown a reasonably normal brain, without any unusual features. But, not all of the tests were normal. One or two of the scans revealed “oddly balanced” brain activity according to records, with more activity on the right than the left hemisphere. I have no idea what to think of differing results and interpretations other than to state that I seem to have done well enough in life regardless of any abnormal findings. What is the “specific” injury this neuropsychologists found interesting? It implies a clear, precise, “you can’t miss it” on the video screen, blotch.

The last two sentences are the troubling ones. “Progressive” is great when it refers to a slot machine jackpot. It’s not a great word when you’re describing a potential neurological disorder. It’s a bad thing. A very, very bad thing. You get the point. And if that was not upsetting enough, the psychologists decided I have “characteristics of high-functioning autism,” which means they do consider me autistic.

The primary psychologist said there’s no way to know if I “would have been autistic anyway” or if a birth trauma altered things. At least one neurologist suggested a positive spin on this: birth trauma might have countered some of my autistic traits. How is that possible? The brain could have responded to a physical injury by “rewiring” itself. The doctors admit, however, that it is more likely that my birth caused everything — which means I would have been “normal” if things hadn’t gone wrong. Nobody knows for sure, though.

Was I genetically predestined to be different? The neuropsychologists told me that you are born with a developmental disorder, and most research confirms this. There is also evidence that certain injuries and illnesses can affect an individual’s personality. Maybe I was “made” autistic? I don’t know and will never know what might have been.

This leads me right back to the question of bitterness and blame. I can’t really say I’d like to be normal. I think I would, but how would I know? Maybe normal isn’t that much better. What I know is what I am; it’s all I’ll ever know.

Attentional/executive elements are also noted, frequently occurring in conjunction with cerebral trauma. Right-sided weakness and palsy (tremors) persist. Inherent with the above-described patterns, as well as a reaction to environmental variables, self-deprecation and anxiety are evident. (Further, medical treatment affects his performance.)

My mind wanders under stress, seeking anything familiar and relaxing. The more stressed I am, the more likely I am to shake. Without realizing it, I must have been shaking rather obviously during the evaluation. I’m not sure what I said, but it seems to have been self-deprecating. That phrase, “self-deprecating,” appears several times within the formal assessment report. This is an issue that appears throughout this book, as well.

I have no doubt that my medications for pain, migraines, and tremors slow my performance on any test. I sometimes feel as if I am moving in slow motion, then I realize I am moving or thinking slowly. Thinking slowly and believing that I am unable to interact well with people leads me to avoid social interactions, which are mentally demanding.

“Lousy guest at parties and social gatherings” isn’t technical enough, so psychologists write things like this:

Facility for social interaction is hampered with flat affect, limited eye contact, and compromises relative to the understanding of subtlety and nuance. S. encounters difficulty with “theory of mind,” understanding what others are thinking. He is literal in response, experiencing reduced self-monitoring skills, thus, at times, verbalizing impulsively. Concomitantly, cognitive rigidity is evident with a good deal of literalness, misunderstanding of the theoretical and esoteric, and a strong need for logic, structure, and clear patterns. Thus, “gray” situations at all levels can create uncertainty and anxiety. Paradoxically, at the same time, S. can be highly creative, displaying strong writing skills. Further, as at times noted in such instances, sensory sensitivity is evident, exacerbated by apprehension.

Yes, my “theory of mind” is all mixed up. I don’t understand how people think, why people play emotional games, or why honesty is only sometimes the best policy. I’ll also never grasp how people manage to enjoy sunbathing, nightclubs, or wool clothing. Humanity is a mystery to me, but an interesting mystery. That’s why I write.

With respect to attentional/executive skills, S. displays a number of limitations, which, as noted, are frequently seen in conjunction with this type of trauma. Facility for speed of information processing is lower (and task execution certainly confounded by the fine motor issues). Efficient recall of new incidentally presented material can also be problematic for S., as well as skill with rapid retrieval of information. Thus, his complaints regarding memory reductions are legitimate.

Because it takes a long time to interpret idiomatic speech, body language, and social rituals, I prefer to remain in the realm of facts and figures — except when I can view humanity as a research project. If I can remain hidden, recording the wildlife in their natural habitat, I’m much more content.

Needless to say, S. displays numerous strengths, being most comfortable with concrete, clear-cut, factual material. His long-term memory is excellent. Facility for numerical analysis is quite good, and he does especially well with arithmetic conceptualization. Generally speaking, he is more comfortable with logical technical pursuits, doing well in terms of visual detail, spatial processing, and abstract visual perception. Certainly, his general reading skills are intact, and he displays strong writing capabilities.

The problem with having a bias towards hard science, with clear facts and the underlying organizational power of mathematics, I expect my life to be organized and predictable. When things go wrong, I often panic. I don’t like to make mistakes and expect more of myself than I would of most people. If I am smart, as many “experts” claim, then I should be able to accomplish more, with better results, than most people. So far, I haven’t done much of anything.

Clearly, the social/pragmatic limitations associated with high functioning autism have impacted S. emotionally. Coping skills, for purposes of allaying anxiety (secondary to misperceptions) have entailed a predictable, structured, and isolated lifestyle. Defensive responses related to control have become quite evident with perfectionism (including obsessiveness) and the need for clear, logical, literal, structured explanation. Thus, through time, S. has engaged in significant self-criticism and personal questioning.

The neuropsychologists prepared a list of suggestions for the University of Minnesota’s Disability Services. Since it was DS that originally suggested the new assessment, this list seemed to me to be the primary purpose of the exercise. I did not seek most of the recommended accommodations. Some of the suggestions in the report include:

In the educational realm, keeping in mind S.’s highly complex neuropsychological profile and providing him with accommodations. Specific suggestions include:

Involvement with a cognitive strategy specialist who can provide guidance and support and additionally act as a liaison for S..

As S. does well with logical, analytical pursuits, planning for involving him in these specific endeavors, which are very analytical and didactic, through research and teaching.

Hand selecting professors / instructors for S. who can provide support and flexibility, accommodating his thinking patterns.

Of course, remembering S.’s significant fine motor issues, offering assistive technology as a compensatory tool.

In conjunction with the above, using a dictation format for writing, as well as voice activated software.

Enhancing organizational skills with persistent usage of a PDA (for planning) and notebook computer (for note taking).

Keeping in mind slower information processing and performance speed, allowing more time for test taking, academic as well as standardized.

Offering examinations in a quiet and private setting.

Of course, as much as possible, providing written instructions / directions and class notes. When appropriate, providing a note taker.

Secondary to S.’s tendency toward boredom and inattention, making sure the learning environment is reasonably distraction free and providing preferential seating.

Because of variable memory skills, supplementing the auditory with visual input. In learning to consolidate new information, in addition to providing reiteration, supplying clues and cues, as well as making clear applied comparisons and practical generalizations.

Again, due to temporal difficulties, providing assignment modifications with longer and more complex projects and/or extended time lines.

To enhance reading comprehension, considering a Kurzweil scanner (see attached).

Within the university setting, aligning S. with an advisor or guarantor who can provide routine monitoring and feedback, as well as guidance for teacher and course placement.

After reading what doctors had to offer in terms of a diagnosis and suggested accommodations, I was surprised the person they were profiling had any success at all. I had to remind myself that they had evaluated me, not someone else. However, don’t know that the evaluation had much of an effect on my experiences at the University of Minnesota. My graduate experience was only slightly different from those of other doctoral students: I dropped some courses I didn’t enjoy, took courses I knew matched my personality, and shuffled my dissertation committee twice. I was one of the few in my cohort to graduate in four years. How “different” neurologically could I be?

My wife is quick to answer when I suggest I’m not different. She insists my brain is different, because she’s talked to the doctors and remembers more of what they have told us. I’m not “normal” no matter what I sometimes want to believe. In her view, the neuropsychologists were simply reiterating what previous doctors had suggested when the lead psychologist bluntly stated, “You are a high-functioning autistic. You meet the criteria.”

No matter what label is affixed to my medical files I am first and foremost a writer. Maybe it will be possible to make a difference being both a writer and a person with autism. After the evaluation, I had to hope there was a purpose for this information.

There was now an official label on my difficulties. I was relieved, depressed, curious, and frustrated. I did not want the label “autistic” and yet it also explained many of my own observations. My wife had no doubts at all and neither did Lisa. Actually, I think I was the only person voicing any doubts, wondering if some other label might be found. There is a stigma to autism — I know, because I had several prejudices concerning the word and the condition.

With respect to high-functioning autism, S. displays a number of salient characteristics.

Autism. The word changed my life.

Undecided

Is “The Autistic Me” an accurate description of some part of me, or the result of ever-changing trends in diagnostics?

I anticipate the nuanced answer I offer is going to be taken out of context and misrepresented by some people and groups. That’s simply the nature of autism debates and discussions, in which the integrity of every advocate is challenged by someone for some reason. Though I assume being frank will open me to some criticism, I believe I should offer the nuances of what the “autism” diagnosis means to me. And so, I offer the following disclosures:

Nuance 1. Psychiatrists, psychologists, neurologists, and schools have applied different labels to me. Only two university Disability Services’ advisors have suggested Asperger’s Syndrome, while two neuropsychologists and one psychiatrist have used the designation High-Functioning Autism in writing. Apparently, HFA is not a consistent category. One assessment assigned a diagnostic code of “299.00: Autistic Disorder” and another used DSM code “299.80: Atypical Autism.” There is something subjective about the diagnoses.

However, the 2006 report also emphasized my “complex history, driven by significant physical trauma at birth.” Before 1999, no health care professional used the “autistic” label to describe me. This leads me to lean towards the “299.80” designation, which is “Pervasive Developmental Disorders” (PDD) including those “Not Otherwise Specified” (PDD-NOS).

The problem with me deciding between 299.00 and 299.80 is that I am not a psychiatrist or psychologist. I have not been trained to administer and interpret test results. I just happen to prefer, emotionally, not being diagnosed with “Autistic Disorder.” This also means I am admitting to being uncomfortable with the diagnosis of autism, no matter which category is used. Admitting discomfort places me at odds with those individuals embracing diagnoses of ASDs.

Nuance 2. Because I was diagnosed with “brain trauma” and “seizure disorder” early in life, some suggest autism is an invalid diagnosis. The DSM and ICD do state other developmental disorders should be eliminated as possible diagnoses, but physical injuries and other causes are not explicitly listed as disqualifying an autism spectrum disorder.

If my injuries caused my autistic traits, that also required I accept that autism can be caused by external factors. At the same time, I also believe most autism diagnoses are genetically based (but not necessarily hereditary). Genes experience random errors during replication. These errors seem to increase the likelihood of a child developing autism. What if I have a genetic predisposition towards autism, and the birth trauma was simply that extra “bump” into being autistic? I admit I have clue what made me whatever I am.

Nuance 3. The criteria for diagnosis require specific traits be observable and quantifiable. There are people with “autistic traits” who are not autistic according to some clinicians and researchers. One missing checkbox in the criteria and the child has some autistic traits, but not autism.

Like many diagnosed with either 299.00 or 299.80, which will be merged to some extent in the DSM-V, I have bad days and good days. If I’m evaluated on a day when I’m stressed and have been over-stimulated, then I’m going to meet the diagnostic criteria easily and obviously. On a good day I might seem almost completely normal. My wife or family might notice the little things, and a well-trained clinician should notice them, but not everyone would.

Part of me wants to believe the Wechsler intelligence test and the other instruments used to categorize me are slightly more reliable than phrenology. Okay, maybe significantly more reliable than phrenology, but that’s open to debate. What I don’t question is how the results alter the courses of lives, especially when our educational system places students in programs based on the results of intelligence testing. The evaluation in second grade certainly affected my life by increasing the supports I received from Visalia Unified School District. The VUSD resource specialist, Mr. McC, changed my life.

The observations by the evaluator can be interesting — much more interesting than the test itself. Maybe a strong defender of IQ tests can persuade me that my perception of the tests is misguided. Yes, intelligence is reflected in the results, but they also reveal cultural awareness and familiarity with a vocabulary. What about a smart person, even a genius, who hasn’t seen or heard some of the vocabulary? You have to have been taught certain skills to perform well on the assessment.

So, I am a skeptic. And maybe I’m also in denial.

Stuart Duncan: Father and Autism Advocate

2011-07-12T08:35:00.000-07:00

As readers of this blog know, I try to keep this blog personal because I only claim to know and understand my personal experiences. I'm not comfortable straying far from what I know. However, there are a few voices I believe my readers should hear and read if they want a better understanding of autism spectrum disorders.

Stuart Duncan is a father of two sons, one with autism. He also has a wife with some physical challenges. You can read his reflection on autism at his website:

Autism from a Father's Point of View: http://www.stuartduncan.name/

Follow Mr. Duncan on Twitter: http://www.twitter.com/autismfather

Everyone should spend a few days (and yes, it will take you days) reading the blog and information posted by Mr. Duncan. He has provided a frank and detailed account of life as a parent to an autistic child. It is the single best parent-authored website I have found. I don't say that lightly, because there are many thoughtful blogs by parents. Unfortunately, there are also some bitter, angry blogs by parents.

The following email interview asks questions I've wanted to ask Mr. Duncan. I hope these questions help others understand his experiences as a parent and advocate, too.

Q: You write of the sacrifices made to ensure the best in services and supports for your son. Some parents at conferences tell me these sacrifices risk causing a sense of resentment among friends and family. You seem to have dealt well with these stresses. (I'm not a parent, admittedly, and don't always comprehend what my parents did. I do try to appreciate their sacrifices, though.) What would you tell other parents about coping with the emotional, physical, and financial costs of autism?

A: Well, first of all, it's true that it does hurt your friends and family. My mother hasn't seen her grandchildren in over a year because we moved too far away. But she understands too. She understands that she shares in our sacrifices. It's not just me that wants the best for my children, my friends and family do too and if that means that they almost never get to see us, then they are willing to do it. And to be honest, if they're not willing or able to understand and make those sacrifices for the better of your child, then you have to really consider if they're worth sticking around for in the first place.

When I tell other parents about how we sold our house and moved far away, almost every single person's reaction has been "well, we could never do that." I can't help but wonder why these people think it was any easier for me to do than it is for them. I mean, I lived close to family, all of our friends were there, my boys had friends there.. we owned the house, my job was there. On top of that, we had no money. Seriously, it was NOT an easy decision and it was an even harder thing to actually do. Friends helped pack our house for free. Friends helped pack the moving truck, for free. Friends took our furniture, BBQ and other items that we couldn't bring. We literally got here with next to nothing, having to take hand me down furniture or buy $100 stoves in yard sales.

What would I tell other parents? Stop making excuses and make the sacrifices. It's never easy and it's never easier for someone else to do. So when you see someone else do what you wish you could have done... don't make an excuse, do it.

My son is doing so very well. And it's because we made that decision and made that move. Instead of saying "we could never do that".. we did it. It was the best decision we've ever made.

Q: How did friends, family members, and colleagues react to learning your son was autistic? Is the education process ongoing or did some people decide they didn't want to understand?

We have, as I suspect many people do, some family members who reject what 'those doctors' say. They don't believe studies and they don't believe the latest "fad problems", as they put it. And so, for a long time, we had people telling us that our son was fine, he just needed more time.

There's generally 2 points, I've found, where family and friends have that "ah ha!" moment. The first is when they get to spend the day with us. Not just an hour or two, but a whole day. And you spend that time with them and show them the things they've been missing. Not just the delayed speech or repetitive behavior (because these things can happen to any child) but when you point out those with all the other things through out a whole day, you can start to see the pieces fall into place in their heads.

The second point is when you sit them down to watch a movie like Adam, Temple Grandin, Loving Lampposts or some others (NOT rainman!). Quite literally, after my sister in law watched Temple Grandin, she broke down crying, saying "I'll never force Cameron to hug me again!"

She really got it.

We've made it a point to try really hard to make sure all of our family see the films and spend a lot of time to understand him. And of course, I'm a pretty vocal advocate so I'm always trying to drive the point home, subtly. You know, once in a while mention how each child is different, how Autistic children are vastly different from other children and so on.

We still get the occasional "are you sure he ever really did have autism?" question, or something along those lines, because he's doing well now and those people tend to only get an hour or two with him... it can be frustrating. On one hand, it's a compliment towards Cameron's progress and hard work as well as our hard work. At the same time, it's a slap in the face. But they mean well so you have to accept it for what it is.

Q: Did other parents offer you lots of advice on which treatments and therapies to seek? How did you sort through the advice to decide what was worth investigating?

Oh yes, and I still argue that this is the biggest strength and weakness of the autism community, is it's passion. When mama bears (and dads) are taking on the world for the sake of their child, there is a lot of passion there that helps them to move mountains. The problem is... are they moving the right mountains?
Unfortunately, there are a lot of snake oil salesmen out there... whether they are just in it for the money or they actually believe their treatments work, it doesn't really matter. Many times, these people (not always doctors either) come up with something they believe works and push it on parents that desperately need something to work.

You end up with doctors using chemical castration on children, electro-shock therapy and more.. but what's worse is that parents buy into it, do it and see results. They don't actually see results, it's just that their children are maturing and developing. But they believe it's the treatment through and through and so, with that mountain moving passion driving them, they don't just give you advice... they push it down your throat. You HAVE to do it!!

For new parents, or just cautious parents, this presents a huge obstacle. First, you try to believe the doctors but find you can't so you turn to your peers but it turns out that you're not going to do any better.
Unfortunately, the only recourse for people is to do homework and lots of it. Every time a doctor or fellow parent gives you a name of a drug, therapy, therapist or anything else that you can type into Google, do it. Do your absolute best to find all of the good about it, do your best to find all of the bad about it. Put it all into a pile and decide for yourself if it's safe, if it's a risk, if it's worth trying, if you can afford it and so on.

You're going to hear people push diets on you, oxygen treatments, drugs, specific therapies and so on. Some cost a lot. Some are very risky. Some don't actually even help at all. None of them "cure" but some do help some people. The thing is, no one treatment helps 100% of cases.

That means that even if you do find that one treatment helped 999 out of 1000 people you talk to, it might not help you. You're going to have to put in the leg work, do the research, do the trial cases at home (if you deem it worth the risk/price) and you're going to have to judge the results for yourself. There's no one else in the entire world that can do it for you.

Q: You website explains your "Autism: Awareness is Not Enough" campaign well, and you've created a Facebook group for Understanding at Acceptance: http://www.facebook.com/AwarenessIsNotEnough

My experience has been that too many autism advocacy groups are unable to avoid contentious issues and end up "aligned" with one movement or another. How do you advocate without getting mired in these debates?

I refuse to take sides, always have. Must be the Canadian in me.

Autism is such a funny creature. It looks, smells, sounds, feels and tastes different to everyone. So why does it have to be that all autism is caused by genes, all autism is caused by vaccines, all autism is incurable, all autism is curable and on and on and on?

The thing is, you have to separate yourself from your own little world. Take a look around.
Yes, my son is doing well and I think he'll have a good adult life. Because of that, I would never try to take autism away from him. He does not need a cure. It helps to make him who he is and if he works hard, and I work hard, maybe it can even become a benefit to his life.

But it's simply not that way for everyone. For some people, it's very much a life long, life taking disability. Many people are never able to speak, use a toilet, feed themselves... should I hate those people for wanting a cure? No. My son is doing fine, that doesn't mean I have to push my opinions on them.
They deserve my help and my support. I'll gladly do what I can to help those people find a cure, if I can. That doesn't mean that I am forsaking my own child, it doesn't mean that I'm not happy with who he is or how he is.

The problem, as I see it, is going back to the passion thing. Once people see a cause, they attach themselves to it and then there is nothing else. It's only vaccines, it's only cure, it's only neurodiversity, it's only genetics, it's only environmental.... with people like that, you can see it in them. I've had one person talk to me about one thing, over and over and over... I literally said "can we talk about something else? Anything?" and they said no and unfollowed me on Twitter.

It's not that I didn't support them, it's that their mission wasn't my mission. My mission is my child and as an extension from him, all people with autism. Cure some, help others, empower others and give everyone the best shot at a good life that we can. If that means embracing and supporting all sides, that's what I do.

Because autism isn't black or white. There are no sides to a spectrum.

Q: You definitely love your son and have become a strong advocate for all autistics. When did you realize that your writings and public appearances were affecting larger audiences? Did that realization change your advocacy, as you were suddenly speaking and working for an entire community?

At first, my blog was primarily my son and I... talking about what we do, what I learn and so on. Along with that, I would have the odd post here and there where I share general thoughts. Something that I feel is insightful, educational... something we might all relate to.

Somewhere along the way, the blog has kind of flipped where I write mostly insightful/educational stuff and only occasionally write about actual father/son stuff. I still reference him all along the way because he's my foundation in learning/experiencing the autism world but more so, I write to the community now rather than just keeping a diary.

I'm not exactly sure when it happened though because it still seems rather surreal to me. When people message me or tell me that I'm inspirational or when they write about me as a leader in the community... I don't know, I have a hard time with that. I mean, I say thank you and all, but really, I'm just a dad... I'm just a parent like everyone else and I'm just a guy learning as I go, doing my best.

I don't really even see myself as an advocate, even though that's exactly what I am... but advocate, activist... it's not my goal. Being a parent is my goal. A fellow parent along with everyone else that needs some help, support and advice. I love to read other blogs, I love to ask questions. Many times, a blog post of mine is a result of a question I've asked. I write it after I get a few dozen or even hundreds of answers. I might have had a thought on it, but I didn't have the answers. Enough people inform me, I share what I've learned.

Which means we're all equals. I'm not sharing anything that people didn't already know. They're the ones who told me!

If anything, I think it's my ability to stay in the middle, to not choose sides, to hear out everyone and take the time to understand everyone's motivations that helps the most. When I ask a question, I don't dismiss the responses that I don't agree with or that I didn't want to hear. I include those in my posts.

That helps, I think, to relate with everyone that comes to read my blog. I might not agree with some of the answers I got, but it's not my place to tell them they're wrong. I include what they have to say.

Q: I suggest parents to follow your blog, your Twitter feed, and Facebook pages. However, I also encourage autistic teens and adults to read your page to better understand parents. What do you think autistics, including me, could better understand and appreciate when parents discuss autism?

Parents, for better or worse, are the gate keepers. No, we don't know what it's like to have autism or to live with autism, but we're the closest thing you have. Not doctors, not "experts" and not authors... but parents that live it second hand. We learn how to cope with meltdowns in order to teach our children to cope. We learn how to recognize what will cause over stimulation so that our children can recognize it and avoid it. We learn how to build routines for our children so that they can live with routines.

A parent is an adult, but a parent grows with their children. You become an entirely new person. You start as a grown up and over time, you become a parent. You develop a bond and understanding that is pretty powerful and even though you don't become autistic yourself, you come to know autism better than anyone else ever can without actually being autistic themselves.

The problem is that, as I said, autism is so very different from person to person that parents can forget that it can be so very very different for another parent and child. In their own way, they're doing their best and trying their hardest and they're fighting for you. Maybe they have forgotten that not every autistic person is a savant, or average or "low functioning"... maybe they forgot that not every child isn't exactly like their child is... but that doesn't make them a bad person, just a little misguided. Don't hate them. Their best intentions are driven by a lot of passion.

Most parents remember the differences, most parents remember that it affects adults and teens too. But we all stumble sometimes. We all forget sometimes. It's easy to become consumed by your own little world when your child is your world.

Please be patient with us. We're getting there.

Q: Autism communities divide along several lines, from "severity" to theories of causation. It seems many parents turn on each other at autism conferences and support groups. I've overheard some vile comments. Is there a way to bridge some of these differences?

My first attempt at bridging that gap was to have every single person in the community to write a common letter, where the last part of the letter began with "this is what autism is to me:" and they'd fill in the rest. The idea being that if hundreds of people read hundreds of letters... people would realize or remember just how extremely different it is to everyone.

Autism can be beautiful, ugly, a gift and a curse. It can be so many things to so many people. And we all need constant reminders of that.

Autistics need to remember that other people with autism are not like them. Parents need to remember that other parents have a very different situation with very different children.

We all have reasons for believing what we believe and feeling what we feel. No one has any right to invalidate that in others and to have it invalidated by someone who has no right.. is quite enraging.
Passion... our greatest strength.. our greatest weakness. Passion leads us to hate each other sometimes. It makes us stop listening to other people who don't share our passion.

We need to keep the passion strong, to learn, educate, support.... we can't stop listening. We can't judge each other. We certainly can't hate each other. That's not what passion is for. It's not what passion is about.

When you see someone make a hard decision that you don't agree with, instead of hating them for it, lend them a shoulder to cry on. You don't have to understand their decision to support them. Not understanding doesn't give you a right to judge them.

Isolation is not the answer. We need to spend more time together, more time listening to each other. We need to take the time to at least try to understand the things and people we don't understand.

Understanding doesn't mean we agree with it. You don't have to agree. Just take the time to understand.
When that happens, I think our differences won't seem so large and with more understanding, there will be less hate. At least, that's what I hope for.

I want to thank Mr. Duncan for his answers. He is busy with his own business, in addition to being an autism advocate. I know my readers also thank him.

Book Excerpt: The Autism Assessment, Part 2

2011-07-11T14:07:00.000-07:00

Yes, more from the formal autism assessment report prepared in 2006. This is from a chapter in my next book, due in early fall. Please feel free to ask questions or offer suggestions. This book is still being written. Your input can help make it a better book!

If you would like to support this blog and my other projects, you can download my current eBook for Kindle or Nook.
A Spectrum of Relationships is only $2.99 on both Amazon and BN.com and I would appreciate questions, suggestions, and reviews while I consider preparing a revised "second edition" next year.

Now, on with the current book excerpts.

Quantifying Personality Traits

Recall that I mentioned the Wechsler Adult Intelligence Scale (WAIS) and the Wechsler Intelligence Scale for Children (WISC) are similar evaluation instruments. It isn’t surprising that the evaluation I received at the age of 37 would be similar to the one performed at the age of eight. The instruments have been revised several times, and I do not recall if the 1976 evaluation used the revised WISC published in 1974 or an older version.

The materials on the shelf at the psychologists’ offices indicated I was administered the WAIS-III. The results, regardless of any biases in the WAIS-III, do reveal my weaknesses.

Statistical results from the 2006 and previous assessments removed. There are several tables of data I do not wish to post online. Some of the data will be in the eBook.

My “processing speed” and “coding performance” are miserable. I recognize that a second percentile score is not top-notch, but at least it makes the processing speed look outstanding. What is coding? Should I even care? Has my lack of coding skill affected my life? If it has hindered me in some manner, I haven’t noticed. However, I do notice my mind is slow at times. I’d rather be slow and accurate than fast and sloppy.

He excelled with crystallized knowledge base (long-term memory). A high average score was revealed for numerical mental analysis with an above mean result in terms of verbal fluency.

I am certain my long-term memory is not that good, since it seems to have gaping holes. I theorize that the long-term referred to in this case is the time between test dates, which was one week. I definitely have a good memory for some things, especially words and phrases. Math also seems to be no problem, though I seem to have trouble remembering the quadratic equation and a few other simple things from high school. All those triangles with square roots get jumbled in my mind. If you don’t know what I’m trying to recall from geometry, it probably hasn’t affected your life, either.

Visual working memory, however, was low average. He had the most significant difficulty with the coding pursuit (psychomotor speed with an incidental learning component). This general response is affected by significant reductions with speed/efficiency for new visuomotor learning/task execution, as well as visual working memory. Social judgment skills were additionally below expected.

The preceding is an interesting passage in the evaluation. My working memory (short-term memory) is horrible. I could have told the examiner as much without any test. It is the last line that seems a curious “tack-on” to the paragraph. I assume I said or did something during the block and peg portion of the test that indicated social impairment. I was definitely frustrated with the blocks, pegs, and checklists. There’s little to no chance that I didn’t tell the examiner I found the games annoying.

On the California Verbal Learning Test-II, a measure assessing the various processes and strategies involved in learning and remembering verbal materials and using a word list format, immediate very short-term recall was more problematic for him, although ultimately he became more comfortable with repetition and cuing. Thus, facility for short and long delay cued and free recall was intact, as well as cued recognition memory. Upon being offered contextually cued material in paragraph format, responses were average for short-term and intermediate pursuits, although, on a recognition basis, some information was lost, the result borderline.

Lists of words were read a various times throughout the evaluation and between other tests I was expected to recite the lists either in order or in related groups. I do recall being more interested in the degrees on the wall and other items in the testing room than I was in the list of words. Why do I care about cucumbers and onions or zebras and elephants? I can tell you that the evaluator attended school in St. Cloud, Minnesota and that the young man in the waiting room during that part of the evaluation was quite ready to go home based on what I could overhear. I definitely lost focus.

On the oral paragraphs, when presented with college level material, applied decoding was good and short-term comprehension at the 100th percentile. His facility for rapid word list retrieval was diminished, however, at the 24th percentile.

It’s good to know that a college instructor has a college-level vocabulary comprehension. But once again, I did poorly when time was an issue. Clearly, I don’t like to be rushed. Sadly, I don’t recall the vocabulary words. I do recall the two stories that were read to me. Four or five months later, I was still seeing a young man with his first job, excited to be delivering ice cream. Something is really wrong when I can recall images from the stories used in the evaluation but not what I read for class this semester. You probably don’t care about the fishing trip story… but I’m stuck with the images.

In the realm of mathematics, for the most part, S. excelled. His conceptual reasoning was notably strong.

At least I did fine in math skills. I love subjects with clear right answers; math is what it is. Yes, I know there are fields like set theory with more than one zero and strange results for matrices, but math still has rules. Language is changing daily.

After some statistical charts, more observations of the psychologists were included in the documentation. None of the comments were surprising to my wife, but I find myself disagreeing with some of them. My wife believes I’m simply unaware of how I talk or when I tremble.

Right-sided tremors were apparent, and this condition precluded accomplishing a number of fine motor pursuits. Eye contact was limited, and initially, secondary to anxiety, S. presented with one-word answers. He became more comfortable with time. For the most part, affect was flat and he was nonsmiling, although he ultimately became more relaxed. Prosody was concomitantly unvarying.

When I read how I’m perceived in the assessment, I do not recognize the person being described. My family certainly doesn’t consider me quiet, and I suppose it is possible that I forget that I tremor slightly until I need to do something requiring fine motor skills of my right hand. As for not smiling, I’m not sure anyone would smile during an evaluation.

Although S. occasionally offered a joke, he seemed to have little perception of humor. His understanding of subtle social interaction and nuance was compromised. For the most part, he enjoyed logic and analysis, being quite literal and, at times, “caught up” in the process of thinking. Some sensitivity to noise was also apparent.

Maybe I was tense, but at least I tried to be pleasant. I wonder if some of my blunt statements were perceived as attempts at humor, though. I definitely didn’t perceive any humor from the evaluator or the test suite’s content. How funny can intelligence and personality tests be?

If anxiety escalated, extraneous motor overflow became apparent through tapping, pounding, and head tipping. Facility for quickly processing certain types of information was reduced, and there was response latency. Often, S. was quite rigid. He became frustrated when asked to elaborate. When pursuits became more tedious for him, he described distractibility and boredom.

For the most part, S. was polite and respectful. There was a strong sense of self-deprecation, and he frequently alluded to his poor memory, also describing cognitive slowing (likely influenced by medication).

Apparently, the noisier the testing center and the more stressful the motor skills test, the more frustrated I became. Feedback loops seem to be inevitable in life: stress causes problems that in turn beget more stress. I didn’t know I tilted or tipped my head, though.

It’s good that I was polite throughout what I considered a miserable experience. I tend to get terse and even rude when I’m doing something I have no desire to be doing. What kept me at the testing center, instead of walking out, was the knowledge that an “official” evaluation was required by the university — the same university that was paying me a fellowship. I also knew it was important to my wife. That’s reason enough to try hard. So, I did everything I could to be polite and complete every part of the test suite. Unfortunately, I wasn’t able to do every part of suite.

Secondary to S.'s difficulty with motor control, a number of motor tasks were omitted from the test battery. For example, with the spelling pursuit, he was allowed to dictate words and a handwritten writing sample was not required. Additionally, secondary to visual and motor issues, he was unable to complete a continuous performance test. The Wisconsin Card Sorting Test could not be accomplished, as he was unable to discriminate colors.

The challenges with my right arm and other motor control issues would be an issue again during a 2008 medical misadventure. No matter how often I explain that paralyzed is paralyzed, several different psychologists have judged my performance using instruments that in no way accurately reflect my abilities. A physical, lifelong injury limits my arm’s mobility. That does not affect my intelligence, but definitely impairs my ability to write quickly or use a computer mouse with any dexterity. It is beyond absurd to judge my mental state by my physical limits.

I’m only mildly colorblind, but enough that on some computer screens I can’t discriminate between shades of blue and a green. By the time I was asked to sit at a computer and match colors and shapes, I was exhausted. My head was pounding and I just wanted to go home. But, I was willing to at least try the exercise. I politely suggested that I at least try to determine the colors, but the evaluator said that it wouldn’t really add to her findings.

Generally, S. was highly aware of his difficulty. At the end of the sessions, he commented, “Thank you, I know I’m difficult and unusual to work with.”

As previously mentioned, before being tested and evaluated, I was given a personality index questionnaire to take home and complete.

S. completed the Millon Index of Personality Styles, Revised, for this portion of the assessment. He presented as a very cautious individual, avoiding problematic situations and distancing himself from difficult interactions. Generally, he is skeptical of relationships and minimizes his social discomforts. For the most part, he is quite preoccupied with his own inner thoughts and feelings. Life experiences appear to have taught him to rarely depend on others. In order to organize his life and gather information, S. turns inward, drawing inspiration and stimulation primarily from within himself. He prefers to keep his thoughts private and in factual and realistic ways. Thus, he is pragmatic, systematic, logical, liking the unambiguous.

Occasionally I will sit and watch people, trying to comprehend human relations a little better. I spent a fair amount of time eating alone throughout the years, giving me many opportunities to witness how mean people can be to each other. Even polite exchanges seem to have dozens of imperceptible intentions, all interacting. I’ve mistaken the motives of acquaintances and strangers often enough to know it is better to watch people from a distance than to risk being mocked, teased, or used in a more devious way.

I don’t tend to make up stories in my mind about what people are saying or doing. I never understood such exercises. If I don’t know what people are saying, what events have preceded an event, or other relevant information, it does not seem right to make up stories. People are more than the moments we witness. I know I’m more than the impression left on most people who meet me.

He has a strong affinity for immediate, well-documented, and clear-cut disciplines and works at imposing structure on work, as well as personal family life. S. puts duty before leisure. In fact, he tends to react negatively if tasks appear too enjoyable. Becoming lost in minor details and exhibiting rigidity about established procedures and regulations is apparent. S. can lose sight of alternatives of potentially greater value (failing to see the forest for the trees). Usually, he is controlled and narrowly focused.

Fun is a difficult concept for me. It isn’t that I don’t find some things pleasant or even exciting, but I don’t seem to have a list of things that make me “happy” on a regular basis. I know I like being with my wife, my cats, and interesting books. I have an affinity for water rides at amusement parks, which is hard to explain. I like cool water much more than I like the bumps and drops. Fun is important to me, but I do feel guilty when I take too many breaks.

I always seem to have a long to-do list. I wish I could complete many of the stories, plays, computer programs, and website ideas I have. It often feels like I have never accomplished anything. Maybe I haven’t accomplished much in life. I’m not sure how to measure such an abstract concept as “accomplishment” other than by counting words, pages, or dollars earned. I tell myself the concept of accomplishment is too vague to worry about, yet I feel compelled to do something with my life. This need for quantifiable success frustrates my wife.

Generally, his personality pattern is notable for noncompetitiveness, self-sacrifice, and social inhibitions. S. deflects attention away from himself, underestimating his contributions and achievements. Therefore, he will focus on his worst personal attributes, feeling that he has failed to live up to others' expectations.

I’ll be the first to contradict the assessment and admit that I am competitive in my own way. I don’t like to fail, and I measure that by social standards and by the accomplishments of those with whom I am familiar. It’s hard to have a lot of self-esteem when you’ve had a series of failures. When I do look at what I have accomplished, it doesn’t seem like those things were particularly difficult or worthy of praise. Even as I consider commenting on the evaluators’ words, I think they are mistaken — I don’t have any achievements and I’m not clear on what my contributions to society are.

There is definitely a duality to my personality when it comes to achievement. I know that standardized test scores, IQ tests, and grades measure something and indicate a level of competence; at the same time I wonder what that competence does for society. The moment I start to think of myself positively, I critique the things giving me an implied value.

Bad Memories, Strong Emotions

2011-07-09T23:06:00.001-07:00

Working on my autobiographical book this weekend, I reread emails and notes from my four years as a doctoral student at the University of Minnesota. It was a horrible time and the challenge of writing about those experiences might be too much for me to tackle on some days. Sometimes events and people manage to leave deep scars.

I loathe the University of Minnesota. Despise isn't a strong enough word.

My department closed after we moved here. I was mocked by peers. I was bullied by faculty. If it were not for the efforts of a handful of individuals, I would not have graduated. Yes, there were good people within a lousy setting. It amazes me that some people can fight the system year after year and not surrender.

I will write the text, though it will be emotionally draining to relive those years. They are recent, and they haunt me some nights.

More text on my 2006 evaluation is coming this week. By the end of August, I might also post on the 2008 assessment nightmare. Yes, I had assessments while at the University of Minnesota. The story of the second is almost too absurd to be believable.

And yet, I guess I'm one of the people unwilling to surrender. For that, I thank my wife, P.W. in the Office of Diversity at "the U," and Lisa K. Without those three women supporting my efforts, I would have failed.

A Note on Autism Assessments: Time and Money

2011-07-09T18:34:00.000-07:00

In a previous post, I started to share the written report that followed my most recent assessment. I want to clarify some things based on private emails and the public comment posted.

Read the previous post at: Autism Assessment, Part 1.

First, and most importantly, even though my 2006 assessment was mere a "confirmation" for the University of Minnesota, it was neither a short nor an inexpensive process. The interviews of my wife, notes and comments from my parents, the interview with me, and the review of neurological exams required some time before the testing was performed. Reviewing records and interviews is expensive and time-consuming.

We even tried to locate a copy of the 1976 assessment. The confirmation for the U. of Minn. was required to either support or challenge previous assessments and diagnoses. The diagnostic criteria for various conditions and the evaluation instruments have been revised repeatedly during my 40+ years of life.

The actual exams are administered by three different individuals, not including the neurological scans and tests. You can see why this can be an expensive process with technicians, physicians, psychologists, and at least one psychiatrist (M.D. / Ph.D.) in mix.

The exams take days, and were not consecutively administered (thankfully). There were at least a dozen related appointments during the late fall months of 2006 before the written assessment was issued on December 4, 2006. Those tests are not cheap and insurance did not pay for everything.

By comparison, the local school district paid for any evaluations done in 1976. I wish that were available to all parents, but at the time I was listed as "birth trauma" and "brain trauma" in the student records. A brain injury, which is considered a physical handicap, qualified me for free evaluation. My parents probably remember far more about that than I do, since I was only eight.

I'm not sure what parents are supposed to do when a school or public service requires an updated or new evaluation. I'm sorry to report that I don't have any great suggestions. My advice would be to contact local universities with autism specialists. Maybe they know of free or subsidized assessment services.

Remember, a "school psychologist" is not the same as a clinician. The evaluation I received in 1976 would not and does not meet most university standards. I've mentioned this before: the educational standards and licensing are different for school support personnel when compared to practicing independent clinicians. That doesn't mean some psychologists are not employed by schools; you might be in a district with a licensed clinician.

I'll be posting more of the written notes from the neuropsychologist this week, but I cannot (since I wasn't there) write anything about the interview my wife had with the team or what other family members might or might not have reported to evaluators during previous assessments.

Book Excerpt: The Autism Assessment, Part 1

2011-07-08T19:54:00.000-07:00

If you have wondered what a formal evaluation for autism is like, now you can read one. From my current book project, this my reflection on the formal assessment I received in 2006. The assessment is eleven pages, so there will be several posts including my comments.

A reminder that my overview of social connections and the autistic experience, A Spectrum of Relationships, is available on Amazon's Kindle store and the BN.com Nook store. What follows below is from my next project.

On Monday, December 4, 2006, my wife and I returned to the psychologists’ offices for the results of my assessment. My wife was already certain of the assessment results, while I was unsure of what to hope for. If something was “wrong” with me, would it be something horrible? If nothing was “wrong” then did that imply a different issue? It would be as disconcerting to have nothing diagnosed as to have something diagnosed.

We were led into the lead psychologist’s office. Near her desk, relaxing in a small carrier, was a little white dog. I wanted to free the dog, but didn’t say anything. My wife and I sat down and the psychologist opened a folder with two copies of my assessment. The psychologist handed me one of the reports and then jotted some notes on a pad. She told us she was going to explain some concerns the evaluation raised, particularly issues related to my studies at the university.

Whenever we’re in a bookstore, I’ll inevitably catch my wife reading the last few pages of a novel. I can’t stand the thought of reading the ending before the beginning of a story. A neuropsychiatric assessment is different, though. Of course I turned to the last page to read the conclusion. My wife was right and the results were exactly as she expected:

With respect to high-functioning autism, S. displays a number of salient characteristics.

The cynical me suspected it wasn’t a surprise that the neuropsychologists recommended by the university determined I am a high-functioning autistic adult. Part of me suspects mental health and medical experts have to find something to diagnose; the slightly less cynical me has to consider the likelihood that there is probably some truth in the diagnosis.

There is something strange about reading a psychological assessment of yourself. It must be something like an out-of-body experience, though I’ve never had one of those. Part of you wants to deny it all, while you can’t help but occasionally say, “Wow, that’s just like me!” I feel the same way when I read a fortune cookie — sometimes silly sayings inside cookies can be right. I held the report in my hands, looking at it while the psychologist spoke. I wanted to play with the cute little dog and ignore the words being spoken. Of course, ignoring words is a special gift I possess. The dog was adorable.

The report, which my wife has since filed in a safe place, is labeled “COGNITIVE NEUROPSYCHOLOGICAL ASSESSMENT” in all capital, bold type. Beneath the title are my name and the dates November 6 and 13, 2006. There are eleven pages in the folder, written in less than captivating prose. Business contracts are more compelling. At the bottom of the first page I read a single-sentence summary of what other psychologists and psychiatrists had included in my health records:

Various diagnoses have been offered throughout time, including bipolar disorder, obsessive compulsive disorder, Attention-Deficit/Hyperactivity Disorder, mental retardation, high-functioning autism, and Asperger’s syndrome.

Obviously these previous diagnoses were not in chronological order or “mental retardation” would have appeared first. Though I knew the story of my birth, seeing the word “retardation” in a report was a tad disturbing. Some of the comments I had not actually read or heard before, despite providing copies of some previous assessment notes from my own filing cabinet. Sure enough, a psychologist had written “OCD” on the back of a form. How could I be OCD if I didn’t read these notes when they were handed to me the first time? Wouldn’t a compulsive person have read every report at least once?

The last two items were why I endured the testing process. My research had taught me that Asperger’s Syndrome was an autism spectrum disorder. Some clinicians delineate AS from HFA and some do not. I didn’t like the sound of either. Wasn’t autism only slightly better than retardation? At the time, I would have rather been diagnosed with ADHD or even OCD than labeled autistic. I admitted in the introduction that my biases were from media depictions of rocking children, pounding their heads against walls. I couldn’t be like that. Worse, I had read that autism wasn’t something treated easily with a pill and a color-coded day planner. Autism is a scary word, like cancer or cauliflower.

I experienced hope and dread simultaneously. If I was bipolar, it might explain my bursts of creativity. Was that better than autism? What sort of label was going to follow me through the remainder of life? Should it even matter to me? I thought about not reading any further.

“Autism,” was mentioned by one of the women, either my wife or the psychologist, and I tried to tune in a bit more. I looked and the psychologist and then at the report. My wife was paying significantly more attention to the words being spoken. I was too anxious to think clearly, much less listen well.

I read the report several times that night. I also made a copy and highlighted sections of the assessment for the Disability Services representative at the University of Minnesota. I did a poor job highlighting sentences, reminding me that a straight line is difficult to freehand. I decided it would be easier to make dots and lines in the margins to indicate what was important. I must have wasted 20 minutes or more developing a marking strategy. “Not OCD,” the doctor had noted. Was the doctor certain of this? I couldn’t highlight a page without frustration.

Personally, S. has always encountered intense anxiety. He has difficulty functioning in groups, as well as understanding social subtlety and nuance. A sense of rigidity is evident, and he tends to be very self-deprecating, internalizing anger.

Intense anxiety? Check. My anxiety increased while reading the report. As a response to the stress, the teacher and writer in me wanted to edit the paragraphs so the content would flow better. The author, I assume the junior psychologist or the receptionist, jumped from topic to topic, which why this exploration of the assessment also flows poorly. Some genres, including most academic writing, aren’t as readable as they should be. Yes, I spent a fair amount of time critiquing the document.

This paragraph as a list of traits meant to support the diagnosis. Ignoring the writing style, the analysis was reasonably accurate about group settings. I do not like working in groups and do not like social settings. But self-deprecating? Me? I always assumed I was being honest about my failings, which are many. Thankfully, people interpret frankness as a dry wit. I don’t mind being considered witty.

By the middle of the second page I realized traditional “paragraphs” were not part of the assessment genre. I had an epiphany when I realized this document was similar to group projects my students submitted in class. The assessment report was two stream of consciousness works, dictated by the two psychologists and sloppily merged. I needed to let go of my editing impulse and read the document in chunks of sentences. This was nothing like reading a student essay; it was like reading a badly written corporate manual. I thought about cutting and pasting the document in a word processor, forcing the document into a more coherent order. Why not put everything academic in one section, for example? But, this was the document I had to decipher.

Now that you know my internal thought process as I read the document, I am going to step through the assessment’s contents. Don’t blame me for the seemingly random order of the psychologists’ observations. After all, the psychologists recognized my need for order and routines.

Transitions are problematic for him, and he does best with routine.

Moving from California to Minnesota was more difficult than I had expected. Bad experiences at the university made the transition more challenging. I tried to tell myself that the move had been fine during the summer, but my wife reminded me that it wasn’t. I missed my routines, from specific radio programs to television shows airing at the “right” time, not the odd Central Time hour early broadcasters used. I missed familiar landmarks, too. Change was not easy. Having lived in Minnesota for five years, I can attest that I did not acclimate to life in the Twin Cities.

He can be somewhat obsessive, especially with computer-based tasks, displaying some perseveration.

In psychology, perseveration is continuing to respond to a situation or external stimuli long after the trigger event has ended. I’m assuming computer “situations” are the all-too-common hardware and software glitches we experience. I describe my approach to such situations as persistence. Isn’t that a good thing? I hate to give up, especially when my computer has a problem. I’ll spend all night trying to fix something on the computer, be it a hardware or software issue. The computer gremlin has to be defeated! Since switching to Macs, I don’t have as many opportunities to deal with software problems… but I did have to deal with a dead hard drive shortly after starting classes at Minnesota. Not much of a mystery or challenge. Replace the drive and you’re done, especially if you keep as many backups as my wife and I do.

Stress leads to more than perseveration; it leads to migraines and memory lapses.

Apparently, seizures affect short- and long-term memory skills. Of course, stress exacerbates symptomatology.

I’ll be the first to admit that my memory has gaping holes. Under stress, I can’t recall my birth date. That’s not an exaggeration. I’ve been stumped by requests for basic information that for other people is deeply ingrained and immediately retrievable. Try being fixated on solving something, without remembering what started the chain of events or what the original problem to be solved is. I’ll be doing something diligently on the computer, and suddenly pause to remember why I’m performing the task.

Expending a lot of energy on a potentially pointless task is something I do too frequently. I don’t believe it is because I have the energy, so much as I lack the energy and discipline to stop doing something. Stopping takes more energy than continuing a task via mental inertia.

S. attests to an extremely high level of mental energy.

It’s either a high level of energy or insomnia. Is there a difference? When I cannot sleep, I might as well be working. Sometimes, I do sit and watch bad movies at 2 a.m., but more often I find myself writing, reading, or planning some grand project. My websites and blogs are products of many late night hours. Skipping ahead in the written assessment, the psychologists reference those long restless nights when I am most likely to experience the compulsion to write.

At times, S. displays burst of creativity, writing books and completing plays and novels in his head. He frequently overanalyzes and worries. Further, he reports persistent “white noise,” as well as “blank periods.”

Because I can visualize complete stories in my mind, you might assume it would be easy for me to write them onto paper or disk. Words are not pictures, though, and sorting through a visual version to write a good story requires effort. Sometimes, I’ve managed to do that with minimal effort. I have sat down at my desk overnight and composed a complete play. But most of the time I think of the story and do nothing with it. I could tell the complete story to someone at the moment I see it, but I usually let it go away.

When I see a story, it is exactly like a movie. Initially, I don’t hear any dialogue, I only see the action. The result is that I can write descriptions of the scenes before I can write the dialogue. When I do hear words, it’s as if the characters are real, but on camera. Some writers hear the inner thoughts of characters — I have to add those later and always feel like I’m “making up” the thoughts, since you can never be certain what someone is thinking. I’ve visualized myself sitting at a coffee shop interviewing a character.

I never know what I am going to write. I see it, hear it, write it. The stories seem as real to me as any other memories. Because I keep the stories around me, often with multiple copies each in a different location, they probably outlast genuine memories.

With increasing apprehension, he has learned self-calming techniques. Logical thinking skills are highly valued by S., and he is rational and at times very literal. For the most part, he does best with order and patterns. Mood swings can be severe. For the most part, he prefers being alone, doing well in confined spaces.

The way I usually cope with stress is to run and hide. I’m not sure that’s the best technique in the world, but it does help me. When people aren’t being logical, that’s when I’m most anxious. I’ll abruptly leave a situation I perceive as illogical or disorganized. My primary goal is to avoid a complete mental meltdown or an angry outburst. I have no tolerance for ignorance or incompetence. It is best for me to walk away and listen to some quiet music with my head buried under anything that blocks the light. I can’t explain why I need darkness and calming music, but those things seem to help me cope with anxiety.

The opposite of my creative periods are periods of nothing. I don’t get writer’s block, since I can always produce on deadline. I get the sense that I did something but can’t remember what. I’ll spend hours wondering what I was last doing and why. Try as I might to focus on homework, I get bored. Unfortunately, I also get bored in class. The psychologists wrote:

With many academic pursuits, S. is easily bored, frequently working ahead. He has problems with fine motor pursuits and directionality. Timed testing became problematic for him secondary to boredom, and behaviors ranged from impulsivity to obsessive answer checking. For the most part, S. has had low tolerance for the illogic and unscientific.

Boredom is definitely a problem. I was assigned “independent study” in elementary school, high school, and during my master’s degree, and once during my doctorate seminars because teachers didn’t know what to do with me. I have no idea why this trait would be grouped with my lack of fine motor skills in the diagnostic assessment. Maybe the connection is with timed tests, especially the sort with little “bubbles” to fill-in with a number two pencil. After all, I don’t simply check the answers — I check the neatness of the bubbles.

Again the psychologists emphasize my lack of tolerance for the illogical and unscientific. I’m not one for myths, subjective opinion in grading, or superstitions. How can I teach English? I admit grading poses a problem for me, so I do emphasize grammar and mechanics. Grading student poetry would be difficult, since such grading is inherently subjective. One subject I have taught several times is academic composition: organization, logical reasoning, factual research, and so forth. No teacher can avoid bias, but we can do our best. As a student, I know what it is like to be evaluated on stylistic choices instead of content.

A Spectrum of Relationships: A Guide to Understanding Social Connections for Teens and Adults with Autism and Asperger’s Syndrome

2011-07-06T23:31:00.000-07:00

I am pleased to announce that A Spectrum of Relationships is now available for the Nook and all Nook applications (Windows, OS X, Android, iPad) for only $2.99. I am thrilled to have book on both BN.com and Amazon.com.

Follow the link below for BN:

BARNES and NOBLE | A Spectrum of Relationships: A Guide to Understanding Social Connections for Teens and Adults with Autism and Asperger’s Syndrome by C. S. Wyatt | NOOK Book (eBook)

And the Amazon link:
A Spectrum of Relationships

I appreciate the support of my loyal blog readers. Thank you for reading this blog each week and thank you spreading the word.

Book Excerpt: Writing to Understand Autism

2011-07-05T23:14:00.000-07:00

The following text is an excerpt from the first chapter of the memoir I'm completing this summer. The excerpt explains why I write. I wrote a draft of this nearly ten years ago, and I believe the essay is still a good reflection on what writing means to me.

Why I Write

Like many people diagnosed with autism spectrum disorders, I struggle with interpersonal communication. Anxiety accompanies most face-to-face interactions, as worry that something inevitably will go awry. Discovering the power of words revealed a way to be a participant in society, not merely an observer.

Writing allows me to interact with the world. To be more precise, words empower me. My “writing” is a mix of scribbled marks on paper, auto-completed words typed on computer keyboards, and speech converted into text by dictations software. How the words are recorded, stored, and transmitted to others is important, but what matters most is that words are essential to my nature. Words really do define who I am.

I realize that waxing poetic about words defining me seems like a cliché to some people, one that any aspiring author might use to describe his or her motivations to write a story or a poem. In my case it is the truth. Vocationally, I am a professor of rhetoric: the art of communicating effectively. Avocationally, I am a poet, playwright, and screenwriter. Words are my work and my hobby.

Without writing I would be more alienated, more alone, than I am. Don’t misunderstand, I’m not unhappy or miserable, but I am aware that I’m not included in activities with coworkers or peers. I know that I drive people away with what they perceive as an anti-social personality. At best, I’m viewed as egocentric. But when I communicate via writing, people tell me I’m witty and entertaining. Words don’t have to read faces or interpret vocal pitch. My words build connections I’d never be able to initiate in person.

I do not understand people; they are confusing. It isn’t that I don’t understand words or their meanings. What I’ve discovered is that there are too many variables to interpret what people actually mean when they say the simplest things. Unless it is a well-worn metaphor, a phrase I have memorized, I tend to be literal. For me, listening to and reading English is a process of translation. When I was first learning Spanish, I would translate phrases to and from basic English. I do the same with the complex English most people use with ease in speech and writing. I learn metaphors and idioms by context. This is difficult to explain because most people ask, “Don’t we all translate metaphors?” I think the difference might be how quickly, almost instinctively, most people seem to make these symbolic connections.

Consider this sentence from a story I heard: “Her fingers were icicles.”

Most people seem to understand instantly that the example means a woman has cold hands. When I hear or read the sentence, even now, I pause to “look it up” in my memory and consider all the possible meanings. If it is a cartoon character, then she might have literal icicles for fingers. What about someone frozen to death? What about fingernails that are long and pointy, resembling icicles? Then I recall people saying things are “cold as ice” and start forming various connections. It might only take a few seconds longer than for most people, but I have been told that I look “blank” or confused at times during conversations. What I’m really doing during these moments is analyzing metaphors and rushing through my mental index.

Thankfully, I have memorized thousands of common sayings and have a pretty decent thesaurus-like approach to these. I love dictionaries of common idioms and metaphors, since such books spare me the effort of translating sayings I encounter in texts. Plus, language is fascinating to study. My fascination with language is key to my academic survival; it is also key to any vocational success I enjoy.

Imagine hearing only monotone voices, void of any excitement, sorrow, anger, or love. While my world isn’t quite that bland, it can feel close to it. When you cannot read people, you learn to listen to the words spoken and ignore the manner in which they are spoken. You eventually learn, through unpleasant experiences, that people do not always mean what they say. Sarcasm in monotone is meaningless. Thankfully, some sarcastic phrases can be memorized and variations interpolated. Without an ear for inflection, without grasping the clues tone, pitch, and speed provide a listener, the greater parts of human speech are lost.

Standing among a group of colleagues, they might start laughing at a sentence it takes me some time to decode. By the time I comprehend the humor, the conversation has moved along — leaving me behind. It is nobody’s fault, and I don’t think it would be fair of me to ask a group to wait for my mind to catch up with the words. There are times in groups when I feel like I’m merely an observer, not a participant. I try not to be frustrated by this, but sometimes I am annoyed by my mental processes. My mind gets overloaded by casual conversations or heated debates. There’s simply too much going on behind the words.

People in a group are doing more than speaking. There are facial expressions, gestures, proximities, and additional non-verbal components to communication. I study these elements of interaction, hoping to understand them better and to mimic them with some skill. Over the years, I believe I have developed the ability to mimic quite well. I doubt most people meeting me only once or twice would notice anything unusual in my responses to them. It is over time that people notice I’m not like everyone else. Sudden or unexpected gestures can seem threatening to me and cause anxiety. When I can’t anticipate someone moving an arm or waving a finger, I might flinch or step away. Facial expressions are at least not threatening in quite the same way as movements. Expressions are confusing, though.

It is difficult for some people to believe, but I have confused “happy” facial expressions for sadness and anger for surprise. For me, body language is like the English words and phrases I look up and study so I can interpret what people mean when they speak to me. I try to analyze faces carefully, looking at details based on books I have read. I have read a lot about body language and, like my obsession with books of sayings, I believe my ability to interpret people has improved with each book read. Of course, using memorized cues doesn’t mean I get the cues right every time… but it is better than I was doing before reading on the topic of body language.

Unfortunately, I’m still not good with conversations. I hyper-focus on issues and interests, to the point of annoying those in my presence. I latch on to ideas, concepts, objects, projects, and people for a sense of stability and purpose. While others adapt easily to temporary changes in settings and routines, I find minor deviations from my routine generate a sense of panic and anxiety. As a result, in a social situation I locate a safe, quiet, predictable location and remain there. I try to remain in place so others can approach — and leave — as they want. I can address groups because the distance between an audience and me provides security. The more distance, the better. No one can tell if eye contact isn’t perfect when I’m standing a dozen or more feet away.

When I do interact with individuals, I am as likely as not to offend them. I do not have the social skills society expects, especially in business. Despite my best attempts, I frequently lack tact and subtlety. I sometimes anticipate that what I am about to say might be improper, but I still speak aloud. How can I recognize something is improper? I have created a mental list of things I have been told were improper in the past. The list grows more slowly now, but it is still growing. Sometimes I forget a question or statement is on the list of things I should not say or ask. How can you anticipate every combination of circumstance and every potential social exchange? Even the guidelines I have created for myself based on more than 40 years of social interactions can fail me in humiliating ways.

You “say” the wrong thing in an essay, it becomes humorous. You ask pointed questions in an editorial, that’s considered being a tough journalist. But there are things apparently not said aloud. Writing lets me say or ask almost anything with impunity. It is nice not to worry about my thoughts being socially acceptable. And I get to write at home or in my office, as opposed to navigating a new place.

I am anxious in new situations and settings, often relying on habits to remain calm. I can’t really explain it, but I will try to do something inconspicuous with my hands, arms, or legs to relax. I might tap my cane, for example, using the rhythm to soothe my nerves. Familiar objects become essential to cope with my anxieties. Leaving home without at least one such object can be disastrous. I’ve risked being late to important events or meetings in order to return home for a forgotten item. It isn’t about one item or even a small set of items. I simply need whatever it is at that moment that helps me relax.

Even when I am alone, safe at home, I am not always comfortable. Lights, sounds, smells, and even textures can send me into a downward spiral if I do not take quick action. It can be a simple shirt tag scratching my neck, but it will feel like a knife carving into my flesh. Maybe it is only a banana peel in the kitchen trash, but I’ll smell it in the bedroom and be overwhelmed by the odor. A car backfiring echoes painfully between my ears, hurting so much I fear my ears will literally bleed. I have even been annoyed by the texture of paper in a book, which felt like sandpaper to my fingers.

At least alone, I can take action to restore order — after I calm down and think through the situation. I can remove a shirt tag. I can take out the trash. I can put a book down for a while. Okay, I burrow under a pillow after a car backfires, but at least I can do something to recover. It is the unpredictable, the thing I cannot prepare for, that sends me into the deepest downward spiral. Imagine taking these sensitivities into a social situation. Why would I risk that? There is always something I won’t be able to ignore.

I have described the sounds around me as constant static. It becomes overwhelming at times, but I realize I have to force myself to deal with the background noise most of the time. I end up using one sound to block the others. At night, I will turn on a radio to drown out any sounds from outside. The worst annoyance is that I cannot ignore conversations, much less other sounds. I hear bits and pieces of every conversation around me in a restaurant, at a party, or even on a train. The voices can be too much, and I have excused myself from dinner because it.

I could continue to list personality traits, attempting to explain how I experience the world, but doing so would serve no purpose. While there are medical explanations for how I am, none excuse my lack of interpersonal skills. I am tired of acronyms and labels, diagnoses made after each new test. What matters is that I can write.

Writing is one form of communication I can master. Words on paper are clear and concise. When I write, I can edit and improve my thoughts. I can correct the mistakes I would make in person. Writing is my freedom. It is my appreciation for words that guided me back to school (several times) and helped me finally complete a graduate degree program. My journey isn’t over, and never will be. At least I’ll have words and writing along the way.

Quick Reminder
If you have any thoughts on the memoir project, please share them. The final version of the book will be improved by your suggestions.

Also, a reminder that A Spectrum of Relationships is available via the Amazon Kindle store for only $2.99. If you are a journalist or blogger, feel free to contact me for a copy of the ePub file for review purposes. I am also more than willing to be interviewed on A Spectrum of Relationships or anything else related to my experiences and research.

My wife and I are in the process of moving several hundred miles for my new job. This move is a major disruption to my routines and is affecting my focus. It is also proving to be ridiculously expensive. I now understand why people say that it is nearly impossible to move for a job. I have to admit, we are taking a huge chance relocating. Did you know a moving company charges $5000? Plus, we have several trips between states to coordinate the move.

If you are kind enough to purchase A Spectrum of Relationships, any income will go towards our moving fund. And yes, the move will be enabling me to continue working with special needs students, including college students with ASDs.

Book Excerpt: A Word That Changes Lives

2011-07-04T11:18:00.000-07:00

People have asked for a bit more of my story, so I have set myself the goal of finishing an autobiographical text in the next two months. That's quite an undertaking, but 58 days should be sufficient if I apply myself to the task. The real challenge is how to write an honest book that helps other individuals in some way. I'm not sure I can or will accomplish that goal. Autism spectrum disorders and the experiences that accompany ASDs are too varied for any one or any dozen memoirs to help explain what it means to be "autistic."

As I did with A Spectrum of Relationships, I'm going to post sections of the work in progress. I am not posting everything. I will be sharing primarily those sections that seem to need some reader suggestions for improvement before the complete book is revised and published.

When you read the text posted, please remember that the story of "me" is told from my perspective — which includes whatever biases I have, faulty and missing memories, and a fair amount of frustration. Do not hesitate to suggest a section be expanded for clarification or that I address a topic I might have omitted.

I previously used the subtitle An Educator's Journey, but that failed to capture how I view myself. I love words. Writing, reading, and teaching about words. So, I decided on this new subtitle. And now, the planned introduction to The Autistic Me: A Journey in Words.

Autism.
The neuropsychologist had said something about autism, right before I was distracted by a dog. Yes, a dog. More on that later.
#
You probably have an immediate, possibly passionate, response when you read or hear the word “autism.” Like most people, I associated autism with silent, rocking children who seem unaware of the world around them except for the random tantrum-like outburst. Though I had read various news articles about autism rates increasing and worried parents avoiding vaccines, my knowledge of the actual condition was limited.
My mother, a teacher’s aide in special education, works one-on-one with special needs children. These are the children I envision when I hear words like autism. I know I’m not alone, either. These children speak few if any words. They are cognitively and emotionally impaired to the extent that many will need lifelong supports. Autism, for the families of these children, is synonymous with “trapped.” In these situations, autism is an emotional and financial struggle for families and support providers.
Autism, beyond my mother’s work, had no connection to me. I certainly had no connection to it. I had plenty of other physical limitations, including diagnosed cognitive and neurological conditions. Autism wasn’t part of my medical files, which were thick enough already.
My first prolonged exposure to the word autism occurred in the summer of 2006 when I encountered an odd puzzle piece-shaped poster at Texas Tech University, in Lubbock. “Increase Autism Awareness,” it read. I was a session presenter at the annual Computers and Writing conference, which for some reason was being held in what another attendee referred to as “Satan’s favorite vacation spot.” Because of the combination of heat, wind, and reddish dust, I preferred to wander the halls of the university while others lunched outside or explored the campus grounds.
I found myself reading the autism posters and bulletin boards announcing various research and educational programs hosted by Texas Tech. It was clear that someone at Texas Tech was dedicated to autism research for a personal reason. I probably learned something from the posted materials, but I was too focused on my future studies to give anything else much conscious thought.
Not only was “autism” not on my mind, I was struggling in general to focus on conference presentations and events. My wife and I would be moving from California to Minnesota following the C&W conference. Moving is stressful for everyone, but this was a major gamble on our futures.
#
Minnesota was supposed to be fresh start for us. The move would put behind me two decades of career turmoil and several previous attempts to complete advanced degrees. I had earned a master’s degree in English Composition Theory and Rhetoric, finally, at the age of 37. What I dismissed as a personal battle against my hyperactivity and intolerance for ignorance had been won. I had managed to tolerate people long enough to complete something. I was now going to attend the University of Minnesota and complete a doctorate, specializing in educational technology and immigrant communities.
Things have a way of not working out as you expect, especially when you’ve convinced yourself a lifelong problem has gone away. The move to Minnesota went fairly well. The summer was spent with my wife, exploring and celebrating the apparent change in our fortunes. But, summer ended and school began. Within weeks the old problems reemerged. While the specifics will be explored in greater detail later, the basic circumstances will be familiar to many readers.
I lost or quit, depending on how you view the situation, a job as an on-campus writing tutor within two weeks of beginning training. It seems I was awkward and made others uncomfortable. I had a tendency to tap my cane, which I used to maintain better posture and reduce back pain. When working with people, I seemed inattentive — the key word being “seemed,” which matters to most individuals. Though I could recite what someone had told me, a lack of eye contact and terse responses left students and staff believing that I didn’t care what they said.
“It doesn’t seem that you want to be here,” I was told in a private meeting. “Maybe you should reconsider working as a tutor.” For now, I will skip most of the events that followed. This was not the last horrible incident at the university triggered by my personality quirks, and each incident invariably led to conflicts with staff and faculty. The university experience was a series of misunderstandings and miseries.
The beneficial aspect of this early failure, the only positive I can count, was that I ended up in the office of Disability Services several weeks into my first semester at the university. After being redirected from the employee to the student division, my file was assigned to Lisa. She is personally inspirational, but what mattered at the time was her ability to quickly analyze situations. During a series of meetings with Lisa, I explained what I viewed as my health issues. I was also rather defensive about the situation at Minnesota, since I had never used Disability Services as an undergraduate at the University of Southern California.
Yes, I explained, at Fresno State I had contacted the Disabled Student Services. I used a cane and sometimes needed transportation assistance across the massive CSUF campus. Getting from the room where I taught to the building housing the English department could be a chore. After tripping on a cracked sidewalk, I was told to seek the assistance. I didn’t think other problems I had at CSUF related to the lost tutoring post at Minnesota.
What I did not know at the time was that Lisa specialized in both attention deficit and autism spectrum disorders. She quietly observed my behaviors and asked questions. By early October, I had supplied her with a partial academic history. It was while discussing my academic history that Lisa asked if I had a recent evaluation for ADD/ADHD. She said it wasn’t uncommon for students who were gifted to also struggle with attention deficit. I revealed that, yes, I had been diagnosed as ADHD about seven years earlier, but that the medications did not address my quirks. If anything, the medications and educational “therapy” made my personal life more complicated and unpleasant.
I admitted to Lisa that I felt like a failure. Here I was, supposedly far above average in some ways, and incredibly below average in ways that mattered most to my success. Lisa knew she had an advantage: I was struggling and very close to walking away from my degree program. She also knew I didn’t want to disappoint my wife, so I was desperate to make things work. Lisa can be quite persuasive. By November, she convinced me to undergo a new neuropsychological assessment.
“Have you ever heard of Asperger’s Syndrome?” she asked.
I answered that I had heard the term but didn’t know what it meant.
“Well, we think it is part of a range of disabilities known as autism spectrum disorders.”
I wasn’t sure how to react. I was in my mid-30s, being told I might want to be evaluated for autism. Autism? Really? I thought to myself. The notion struck me as absurd. Autistic people don’t attend universities and they surely don’t earn academic honors. It sounded like another trendy diagnosis to me, which is how I now felt about my ADHD diagnosis.
Lisa provided a list of educational psychologists and testing facilities. Though I was convinced nothing was really wrong and I simply don’t “mesh well” with other people, I agreed to call some of the local specialists for an evaluation. It took me a few days, but I did make the calls. The first two specialists I called had practices specializing in ADHD and learning disabilities. Both asked me a few questions and suggested I contact an autism and Asperger’s specialist. I decided to think about the situation a little longer.
No, I told myself, there is no way I can be autistic. It was absurd to think that someone with an above average IQ, a member of various honors societies, could have anything related to autism. I decided to prove to myself that Lisa and the psychologists were mistaken to even suggest such a thing. I don’t have much faith in experts, especially in fields like psychology.
#
Forty-two. After a half hour of answering questions, there was a large 42 on the computer screen. As fans of the Hitchhiker’s Guide to the Galaxy know, the meaning of life is 42. That was my first reaction when I saw my “Autism Quotient” score. My second reaction was, “I wonder if an 84 percent is bad?”
The University of Minnesota Disability Services specialist I was working with had politely suggested that I should spend a few minutes taking the Autism Spectrum Quotient survey or a similar self-administered test and then at least consider the results with an open mind. Using Google, I quickly learned that researchers at Cambridge University developed the Autism Spectrum Quotient, which was described in an article appearing in the Journal of Autism and Developmental Disorders in 2001.
An AQ score ranges from 0 to 50, with numbers above 22 indicating the possibility of an autistic spectrum disorder. The Cambridge Autism Research Centre considers scores above 31 to be “very high.” Apparently the average score for an individual with Asperger’s Syndrome is 35. Okay, so a 42 wasn’t necessarily a “good” thing. Thinking it was a quirk of mood, I have answered the questionnaire in the months and years following. The score consistently falls within 42 and 45. Regardless of my mood, setting, or other factors, the results are within a narrow range. I knew that such “instrument consistency” meant I should pay attention to the data.
What if some of my personality quirks were symptomatic of an autism spectrum disorder? I became fixated on the word “autism” and its horrible implications. To me, autistic meant intellectually and neurologically disabled. It meant those screaming kids who sat rocking for hours. My mental image come from outdated media depictions. Autism didn’t mean someone like me. Sure, I’m a little different. Okay, I’m odd. But how could I be autistic?
I made another phone call. This time, I called a neuropsychology practice that specialized in testing to autism spectrum disorders as well as other learning disabilities. I’m not sure if I wanted to prove the AQ results to myself or disprove them. Personally, I think I’d still prefer a diagnosis of attention deficit, but I have also come to realize ADHD doesn’t preclude having an autism spectrum disorder. You can have an ASD along with OCD, PTSD, ADD/ADHD, and a long list of other acronymmed conditions.

Spectrum of Relationships now in Kindle Store

2011-07-02T16:24:00.000-07:00

Today, A Spectrum of Relationships appeared in the Kindle Store on Amazon. The text is $2.99 and is only available in digital format. We have uploaded the ePub edition to another eReader store. It should be available by July 8 for $2.99 via the Nook store. I'll be certain to post that link, too.

Product Description
A Spectrum of Relationships explores the social connections teens and adults with autism spectrum disorders (ASDs) form with other people in their lives. The author, C. S. Wyatt, reflects on his own experiences as a diagnosed high-functioning autistic individual navigating the complex and sometimes frustrating social situations of daily life. From early classroom experiences to dating and marriage, this book discusses relationships with family, friends, classmates, coworkers, and lovers.

Children with autism spectrum disorders grow up to be adults with ASDs. Many, if not most, will have the same urges, impulses, and desires as the rest of the adult population. Autistic adults want to work. They want to pursue college degrees. And, though their parents and caregivers might not want to ponder this, the teen or adult with an ASD will experiment and eventually engage in romantic physical contact with another person. Some will get married as adults and have children of their own.

Autistic students and adults often feel invisible at school, work, or among their peers. These autistic individuals are intelligent and some have taught themselves enough social skills to succeed academically. Unfortunately, few have mastered the social skills that become essential to personal and professional success in adulthood. A Spectrum of Relationships offers some ideas and encouragement to those discovering the essential nature of social connections to personal fulfillment.

Strangers in Our House

2011-06-28T20:35:00.000-07:00

I've taken three cats for rides in the Jeep twice this week while people have toured our house. I hate the idea people are in our house, so I was nominated to take the kids for these trips to the park. Like the cats, I'm not happy about this. Unlike the cats, I at least know the reason we have to leave the house is to help us move to a larger house.

Rearranging our possessions bothers me. I like things where I like them. So, after I return from these short drives, I try to restore my sense of order as best I can, while knowing some things need to be packed and hidden.

My wife did the house hunting for the new home. She's dealing with strangers in our house. I hate both processes, so it is best that she handled these tasks. I'd want to clean the homes as I toured them. When we looked at homes before moving into our current residence, I hated seeing how little people care for their homes. I like things clean and maintained.

The idea people have walked through our house bothers me. I wish the house could be perfect before letting others see it.

When we move, I plan to remodel the entire house and yard. New everything, over a few years. It is a need to have things my way, certainly, but also a need to feel like the "previously occupied" house is a new house for us. As we start work on the new house, I'm sure I'll have plenty of stories of frustration.

This move is it for us. I'm going to do all I can to be the best at my new job. I will also do all I can as a freelance writer. Ideally, I earn enough additional income from writing that we can do wonders with the new house.

City Life Could Change Your Brain for the Worse | Wired Science | Wired.com

2011-06-25T12:04:00.000-07:00

I'm glad research is finding evidence that supports my impressions of city life. This research could have implications for autism, as well. There is significant evidence that autism rates are higher in some settings, but we don't know how correlations relate to causation or other factors. Simply finding more autistics in a region doesn't mean something in the region causes autism. It could be that similar people slowly congregate.

But, this study finds evidence that city life itself changes the brain. The implications are fairly important. Humans didn't live in cities of millions until recently. We did not evolve in groups much larger than a few thousand, and more often our social groups are under a thousand people. We're only emotionally wired to handle connections to 150 people or fewer. We deal with 1000 or more by connecting though our close connections. We connect beyond the 150, in other words, but we do so via networking.

City Life Could Change Your Brain for the Worse | Wired Science | Wired.com: "A study of German college students suggests that urbanite brains are more susceptible to stress, particularly social stress, than those of country dwellers. The findings don’t indicate which aspects of city life had changed the students’ brains, but provide a framework for future investigations.

“Whether people are exposed to noise, live near a park, have a big group of friends or not — you can do those experiments, and tease apart which parts of urban living are associated with these changes,” said Andreas Meyer-Lindenberg, a psychiatrist at German’s Central Institute of Mental Health.

Meyer-Lindenberg’s findings, published June 23 in Nature, are a neurological investigation into the underpinnings of a disturbing social trend: As a rule, city life seems to generate mental illness.

Compared to their rural counterparts, city dwellers have higher levels of anxiety and mood disorders. The schizophrenia risk of people raised in cities is almost double. Literature on the effect is so thorough that researchers say it’s not just correlation, as might be expected if anxious people preferred to live in cities. Neither is it a result of heredity. It’s a cause-and-effect relationship between environment and mind."

Meyer-Lindenberg’s team repeated the study twice more with a total of 70 more students. Each time the same pattern emerged. The researchers then looked for links to age, education, income, marital and family status, mood and personality. But when those were taken into account, the pattern still remained.

Divergence from middle-of-the-range levels of amygdala activation in socially stressed test subjects. Nature

The larger the city in which a student lived, the more active their amygdala. The longer they’d lived in a city as a child, the more active their cingulate cortex. In other studies, the cingulate cortex has been described as
especially sensitive to early-life stress, with alterations linked to adult psychological problems.

City life does not agree with me, not in the least. I can't relax for a minute living in the Twin Cities. I hear the constant traffic, sirens, trains, trucks, busses, and other noises. I've written here several times about the sensory overload that is the city.

I don't know how any autistic lives in a huge metropolis without going insane. The Twin Cities aren't even that large and they are way too much for me. Cities are like rat mazes, dehumanizing and horrible places.

People pushing urban living in the name of sustainability don't seem to recognize that humans were not meant to live like this. Cities contradict our very natures. Becoming desensitized to the stimulation doesn't sound great to me. Eventually, people in cities seem to be desensitized to humans, as well. How is that a good thing?

Autism, Therapists, and My Experiences

2011-06-24T09:36:00.000-07:00

It's no secret I have a deep disdain for the mental health professions, based on my personal experiences and observations. My work with families and students also reinforces my suspicions that too many support professionals don't understand the autistic experience, including those professionals supposedly specializing in autism.

My most recent blog entry on the topic was:
Autism Therapies and The Autistic Individual
http://theautisticme.blogspot.com/2011/06/autism-therapies-and-autistic.html

One of the readers of my blog sent a note that included the following:

"Your experiences were in the 1970s and 80s. Things have changed. You don't know what is done now for autistics."

My last individual appointment with a counselor specializing in autism was in late November 2006. That is not ancient history. I also had a follow-up evaluation in early 2007 during which the psychiatrist was condescending, critical, and inattentive to anything I was trying to explain to her. (I won't write about her or her assistant. Pointless waste of several days.)

In 2006, the University of Minnesota's Disability Services had asked a campus counselor to help develop a list of concerns we could present to instructors to help them understand my physical limitations and cognitive differences. This was shortly after I had lost a job and had been called "Gimp" after falling in a university hallway. The job loss had a lot to do with people being "uncomfortable" around me. I believed it was because I used the cane and moved in a rather "weird" manner. There's more, but the reason to see the counselor was simple: obtain a written list of traits for faculty, so I'd have some legal protections against discrimination.

Meetings began in early October. I kept waiting for the list for Disability Services. The counselor didn't help write the list. Six weekly meetings passed and no list. Instead, I was feeling worse and worse about being different. I was starting to despise the university, some of the faculty, a few of my peers, and the entire disregard for my differences.

Any problems I was having started to feel like my fault. It was as if I purposely chose to be different and wasn't willing to change. I was resisting adapting, the counselor implied. Yes, because migraines, back pain, severe leg and foot pain, those are all symptoms of an unwillingness to adapt.

The counselor talked several times about having an autistic relative. He told me how much he understood my traits. He would help me overcome them. You think I hadn't tried for 40 years to change? Plenty of people had told me I was defective. I know I'm supposed to be different according to too many people.

I finally terminated the sessions. As I stood shaking violently, I told the counselor he had helped the ignorant faculty by making me feel lousy. I wasn't coming back.

Before that, I met briefly with an educational specialist to deal with focus issues in the late 1990s. I had stumbled badly at work and in an attempt to return to graduate school. I couldn't focus and I couldn't deal well with sensory issues. The educational psychologist had the psychiatrist with whom he worked prescribe Ritalin (the generic) and various other medications. That psychiatrist interviewed me for less than fifteen minutes.

The educational psychologist? He went way, way off the anticipated path of dealing with my focus issues and inability to deal with ethical gray areas and school and work. My rigid thinking was a demonstrable problem in both settings. The medications were for those issues, the psychologist said.

I'm not going to detail everything the psychologist suggested were issues in my life. Suffice it to say, I was too trusting and assumed his advice was correct, no matter what I was feeling or thinking about the advice. My relationship with my wife was damaged, certainly, and other relationships were affected negatively.

I'm not on any medication now. Turns out, while I might be considered ADD/ADHD, the medications aren't useful. I write 1000 or more words a day, and have for the last three years. Yes, I do a lot better after I stopped seeking help.

Only in the last two or three years, have I come to appreciate that I am the way I am. I do not need to be "fixed" and I don't need to keep trying to change traits that are too often the result of trying to deal with real, severe physical pain. I'm not going to endure pain and pretend I'm not in agony simply because that would help me appear more normal to the world at large.

If I'm in pain and physical distress, I'm not going to force myself to ignore those important warning signs.

How do I know the psychologists, psychiatrists, and counselors were wrong? Because in the end medical doctors discovered I had real physical problems, possibly for years, that had caused traits confused for "acting autistic." I had a dangerously low blood count and needed transfusions. The top epithelial layers of both eyes had torn repeatedly, due to base membrane dystrophy. The pain of eye injuries is so intense many people faint, a doctor informed my wife and me. I had experienced numerous eye tears, maybe as many as three or four dozen. Think about that. I've now had several eye surgeries, including a laser procedure.

And the mental health people? They told me I couldn't focus and read because of autism. I couldn't handle lights in a room because of autism. I was afraid of sleeping (when my eyes often tore) because of autism. Yep, it was all autism. Even when I said, "My eyes hurt. They really do hurt."

I was told autistic children often say the same thing. Okay. Maybe those children have eye problems?

I even had a hernia. In 2011, we discovered I had real nerve damage in a my left foot, from years of a problem that had never been addressed. That one reason I walked "oddly" — not autism. (Being partially paralyzed also affects my gait.)

So, a great many "autistic" things were serious physical conditions. The mental health experts were so biased after reading various diagnoses that they couldn't see the physical complaints were real. The pain was not a symptom of emotional or cognitive issues.

At least EIGHT mental health professionals in two states had tried to address the wrong issues within a decade. And their approach, even if my issues had been related to autism, were simply not the best for an autistic individual. And that's not counting my childhood experiences!

I haven't written about even a fraction of the lousy "therapies" I've seen personally or been asked about by parents. Stunningly bad therapeutic approaches, from at least this one man's autistic perspective.

Yes, I'm biased. I think most people would be.

Relationships, Sex and Autism / Asperger's Syndrome

2011-06-21T15:26:00.001-07:00

My wife and I are currently revising A Spectrum of Relationships, which is a guide to social connections for teens and adults with ASDs. The last chapter deals with romantic relationships. Because this book is a broad overview of social situations and not a dating guide, we decided to include only a few short sections on physical relationships.

Many of the questions I do receive following public appearances do deal with sexuality and romance. I know there are some texts on autism and sexuality, but I am wondering if I should prepare a separate book on those matters.

Writing about sexuality is a challenge because I don't believe there are "norms" of sexuality that can be neatly organized along autistic / non-autistic lines. We can discuss studies of human sexuality and surveys of opinion on the physical and emotional aspects of relationships, but there is a lot of variety among all people.

I have included a section in A Spectrum of Relationships on how some autistics report their sensory issues affect physical aspects of romantic relationships. Obviously if you do not like being touched, strong body odors, and anything "dirty" then sexual contact might be problematic.

Any compromises have to be made with a romantic partner. In a book on romance and sexuality, I could explain how some couples have dealt with these issues and include interviews. I'm not sure any guide can guide an adult towards solutions for those issues, but I can explain what others have done.

If I were to write a book on sexuality in the same way I approached A Spectrum of Relationships, it would include some personal experiences and notes. It is a little strange to consider such things, and I'd only share what my wife and I agreed was acceptable.

A guide to sex and relationships will include language and concepts that might offend some readers. The book would not be for everyone, including some adults.

I would do as I did with A Spectrum of Relationships and post parts of the initial, rough drafts to this blog while I tried to fine-tune sections. Sections of a guide to sex and romance would be edited for the blog, no matter what, since blogs are more public than a book. I don't want to tag this blog as inappropriate for some readers. The final version of A Spectrum of Relationships reflects the suggestions of blog readers and I'm sure it is a better text as a result.

Maybe there aren't enough detailed, frank books on sexuality and ASDs? Would a guide be useful? How much should be included? How detailed should it be? What shouldn't be included?