Monday, January 30, 2012

When Playing Games Isn't Fun

On Facebook, a parent asked about games. Do I enjoy them?

I like some games, but I don't know that I "enjoy" games so much as view them as mental exercises. I don't "play" games. I solve them. As a result, the notion of "playing games for fun" doesn't appeal to me. If I can't solve (master) the patterns, data, or trivia behind the game, it isn't going to be that interesting.

Not winning a trivia game? It means I need to read and learn more.

Not winning at chess? Time to read and practice more until I get better at the theories of various masters.

I don't like random games, either. Too many "fun" games are based solely on luck. I'm not interested in luck. You can't master and win luck.

With the desire to solve and win, I'm not the least bit "fun" when playing games.

Over the years, I have tried to develop my own games. These were not random things. I mapped out alternatives to chess and checkers when I was in elementary school. Movements were dictated by the square of the board, with pieces all the same. The idea was to create logical patterns that could be mastered.

I enjoy darts. Again, it is about mastery. Skill matters, but I don't have to be a great athlete to participate. You can easily try to best yourself, constantly, until you are capable of near-perfect aim.

The perfect game is one I can master alone, or against a computer. My mind against the patterns.

We own a Nintendo DS and the games we have purchased: crossword puzzles, brain games, word games, and chess. Not a single "video game" to my knowledge. I do like PacMan, but that's a puzzle with a pattern. I am not interested in violent games or randomness.

People don't enjoy playing games with me because I am unlikely to be enjoying the social aspects of the game — I'm entirely focused on beating the game's design.

Tuesday, January 24, 2012

Dieting by iPhone

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.

Monday, January 23, 2012

Nearly Empty Restaurants

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.

Friday, January 20, 2012

What if you aren't autistic anymore?

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. 


Tuesday, January 17, 2012

Tough, Painful Days

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.

Saturday, January 14, 2012

Critics Question Obama Choice For Disability Committee - Disability Scoop

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.

Friday, January 13, 2012

Autism Community, Highs and Lows

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.

Tuesday, January 10, 2012

Geek? Nerd? Autistic?

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.

Sunday, January 8, 2012

What is Autistic Me, the Blog?

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.

Saturday, January 7, 2012

Weighty Matters

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.

Tuesday, January 3, 2012

The Crowded Autism Web

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.