Friday, July 30, 2010

Parents Killing Children…

We've had a number of stories lately on mothers killing autistic or possibly autistic children.

What can anyone say about this? Children are stressful, normal or not. Depression, stress, lack of supports, et cetera, are not excuses to kill. I do not doubt depression is real in some cases, but I do not tolerate any excuse for killing children. Even if we don't have perfect supports, there are supports in most cities and counties. Families also have a responsibility to intervene. It is impossible for me to imagine no one was aware problems were present before these children were killed.

The association of autism with infanticide is a common theme in media. I won't bother listing examples.

Monday, July 26, 2010

Why I Desire Social Skills

I don't feel "lonely" most of the time, I feel isolated. That's different. I don't want to deal with people, I want to do things that too often require dealing with people -- leaving me stuck at home some days. People for me are ways to gain knowledge and data; I am interested in people with knowledge I don't posses yet want want to learn. I don't care to be social for no reason. Even with a reason, I'd rather skip the social elements.

I've written that I do sometimes wish to be more social. Though hard to explain, I perceive there would be intellectual benefits -- people would be more comfortable sharing information with me if I were more "charming." So, when I say I wish I were more socially skilled, it is not because I miss the skills or want them for enjoyment, but I wish I could persuade more people with skills and knowledge I admire to be mentors.

My wife is not social, either, but she does much better with people than I do. She is in field that values skills and creativity over social abilities. Engineers can talk for hours about improving a design, debating and questioning the proposed solutions. It helps to have some social skills, but brilliance is valued more. This might be why the sciences were always appealing to me and others with ASDs.

Sitting at home day after day does get tiring. It isn't people I seek out, though, but a change of scenery. That's why I do leave the house when I can. It isn't because I like dealing with driving (I hate it) or people in a new setting, but my mind craves a chance to see something other than the same walls every day. If I were a bit more financially secure, I'd leave the house a bit more often to focus on my writing elsewhere. That's not seeking out people, but it is trying to end the sense of isolation; home can feel like a trap.

Saturday, July 24, 2010

The Flight Impulse

When stressed, I experience an intense desire to flee — to get away from whatever situation is causing the stress. I've left restaurants without ordering, stores without buying items, and even medical appointments when the situation didn't feel right. About the only thing I can't recall leaving suddenly was my classroom when teaching. The good thing about teaching is that you can stop lecturing and alter an assignment to adjust the mood of the room. Next to leaving, establishing some personal control seems to be the best way to reduce stress.

The most stressful moments are those of individual conflict. When I feel threatened or dominated by someone, I do have to leave. I feel physically ill when someone is imposing his or her will on me without listening to or caring about the results. Some people are intimidating by nature. I suppose there are "natural" bullies, people who expect to be in charge at all times. These people aren't inclined to let each person in a room or situation relax and gather their thoughts.

I like low-key people. I need low-key people if I want to function. Anxiety makes me anxious.

Because I feel stress driving in the cities where we live, I have to "escape" from traffic at times. I'll stop half-way to my destination at times and try to gather myself. Other times, I drive out to the edges of the cities to regain composure. There is, unfortunately, no easy way to escape the urban stress — I end up preoccupied with the stress I will experience when I have to return to the cities.

I'm trying to remember you can "escape" without physically leaving a general location. While there are exceptions, like when noise or vibration is the issue, often it is possible to find a quiet space and meditate on nothingness. Quiet, peaceful, calm is a way of fleeing a situation without leaving.

I need a day at the arboretum. Yes, there are people, but you can escape them while concentrating on flowers.

Friday, July 23, 2010

Networking and Employment

I'm finding I don't build large social networks online, at least not compared to other people I know. My Facebook account occasionally rises above 100 connections, but seldom for more than a few days. My LinkedIn network is relatively small, with no recommendations. The same holds for other social networks such as Yahoo, Google, and LiveJournal. I simply don't randomly add people to my network -- not even acquaintances.

The job hunt reminds me that I should expand these networks. HR departments check these connections, whether we like that reality or not. Being "social" does matter to some academic departments, too, especially if you are applying for "new media" teaching posts.

I suppose I could "request" every classmate from high school through my doctoral studies, but most are not people I remember. Those I do remember, it is often for reasons that leave me disinclined to add the individual. I've never been a social butterfly, and the online world makes that rather obvious.

It's strange to think that people care if I have 20 "friends" or 2000, though I do know evidence exists that this matters in careers like sales and marketing. It somehow seems odd to add people I couldn't possible consider real friends, but I do need to seem more active.

A basic truth is that knowing people leads to opportunities, especially for a freelance writer and consultant. So, I am going to attempt to expand my networks. If you are LinkedIn or some other network, maybe you'd like to "connect" with me. Apparently, it is the modern way to build a Rolodex of contacts.

Tuesday, July 20, 2010

"You're not really autistic!"

On another online site, a parent of a "recovering" child with autism pointedly claimed that those of us who are diagnosed with autism spectrum disorders as adults are somehow not genuine. Among the comments posted to Left Brain/Right Brain (http://leftbrainrightbrain.co.uk/):
How does it just dawn on somebody they are on the spectrum??? How do others that are older decide they are on the spectrum??? Schools won't even take real diagnostics so none of the self made Adult Asperger's have any real claim to anything but a way to put down what helped my child to not be on the list of who you're searching for.
The thread, both on LB/RB and as carried on elsewhere, is appalling. A parent actually had the gall to message me that I was not actually disabled, but was instead hiding behind the cover of autism to shill for the government and big medicine. This person argues that anyone speaking, traveling, blogging, and conducting research can't possibly have a "serious" neurological disability.

Stifling my outrage as best I can: tell my mother, who sat with me when I was in intensive care as a toddler that I am not disabled. Tell that to the mother who did physical therapy exercises, moving my limbs to reduce the effects neurological damage. Tell that to the mother who became a teacher's aide in special education. And tell that to my wife, who has stood by me through more than any human should, from medical emergencies to "treatments" gone bad. My wife was treated poorly by me, and I do blame medications and lousy diagnostics. We both had some miserable years due my disabilities. That's one reason I don't like medications or psychologists who see what they want and give horrid advice (as opposed to neurologically-trained psychiatrists).

I'm not hiding behind anything when I speak on issues of education, support, and treatment. I'm not selling any therapies, no promises of cures, no assurances that your child will or will not be a successful adult.

What people like me do is speak out for compassion and understanding of those adults now being diagnosed with neurological / learning disabilities and those children who will become adults with various diagnoses and special needs.
From the editor of Age of Autism:
Why are there stories in the news from around the U.S. on the need for services for adults with autism? What did we do with these people in the past? We would have had to provide for their needs even if they were incorrectly labeled as mentally retarded. Why don't they just go where autistic adults have always gone?
Yes, why don't those of us with neurological difference just slink away into institutions? Why don't we leave the discussion and take our "mild" disabilities with us so Generation Rescue and AoA can save the real autistics?

I am not proud to be disabled. I am humbled by the fact my friends and family, especially my wife and my mother, have made my life possible.

Why are there adults now "suddenly" appearing? Because health care improves, diagnostic instruments change, and even definitions evolve. A century ago we could not test for some forms of cancer. That does not mean those cancers did not kill people -- it means we misdiagnosed the causes of deaths. Just because people once died of "hysteria" and now are properly diagnosed with seizure disorders doesn't mean those seizures magically appeared one day.

There was no diagnosis of "autism" when I was a child. There was no diagnosis of "high-fucntioning" or "Asperger's Syndrome" until the later 1980s and early 1990s, depending on the specific clinician and how reliant he or she was on the DSM criteria vs. other emerging standards for ASD diagnoses.

Yes, I was diagnosed as likely "retarded" and later as suffering "brain trauma" by general physicians, neurologists, and various specialists. The diagnoses changed. I did not go shopping for the label of "autism" and still don't always accept it. It was much easier to think I was "ADD/ADHD" and eccentric.
No, I am not using autism as a cover to attack the views of some people. I do think there are charlatans and snake oil salesmen out there who should be exposed for preying on parents and individuals with special needs, but I don't accuse the parents of lying or having false motives.

There's a lot I want to say, but it is best to realize people are angry, frustrated, and desperate to find someone or something to blame for the challenges they and their children might face. I can't ease that anger. What I can do is ask that people treat adults with disabilities grouped as ASDs with more respect. We don't deserve accusations of dishonesty any more than those concerned parents do.

I'll keep calling the charlatans what they are, because I honestly don't think they are self-deluded. I think they are predators on families. If that means I'm "not really autistic" to some people, so be it.

I might be outraged, but it is at the people and organizations feeding the conspiracy theories and telling the public that people like me are frauds. I simply cannot be angry at the parents -- only saddened that they feel it is okay to lash out at self-advocates.

Monday, July 19, 2010

Autism and Employment

I have started to compile an online guide to employment for those of us who seem to struggle with the nature of both the job hunt and the workplace. This work in progress is outlined on The Autistic Place at:

http://www.autisticplace.com/node/75 - "Employment and Autism"

This project is going to take at least a couple of weeks to be of any value to others. I do think the final results might be helpful to teachers, parents, support professionals, and people like me. It won't be perfect, but it will be a start for people to have these discussions. Please, if you have any suggestions for content, from additions to changes as I work on this, please e-mail me:

webadmin@autisticplace.com

I also encourage readers of this blog to join me at The Autistic Place:

http://www.autisticplace.com - Information and Education. The Latest News and Blogs on Autism

Friday, July 16, 2010

Autism and Income?

This is a comment on:
http://freakonomics.blogs.nytimes.com/2010/07/16/autism-a-disease-of-the-rich/

Within all ethnic groups, wealthier parents were more likely to have autistic children, and the pattern held for undiagnosed autistic children as well.

The original paper commented on is at:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0011551

The title says it all: "Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study"

I have no idea if this represents the ability of parents to obtain screening, the general age of wealthier parents, or some other factor(s). Also, as this is from PLoS, not a traditional peer-reviewed journal, I'm sure there will be some discussion of the research methods. However, we are seeing that PLoS submissions are improving dramatically -- many researchers are simply avoiding the expensive, proprietary journal process.

Thursday, July 15, 2010

Quality of Life Indicators

Autism Advocate, the monthly magazine of the Autism Society of America, includes a list of "QoL Indicators" (Quality of Life) developed by Dr. Ted Carr. The list of issues ASA seeks to address:

  1. School inclusion.
  2. Social connections (friendships, relationships).
  3. Health and well-being.
  4. Academic success.
  5. Autonomy.
  6. Supported and independent living.
  7. Supported and independent employment.
  8. Subjective well-being.
  9. Recreation and leisure.

I don't quite understand why some of these are separated, since they are closely related. For example, I assume "school inclusion" and "academic success" should be together. When you can have academic success via independent living, part of education is socialization.

I'm also not clear on the "autonomy" point. We are all interdependent in a society, so this must mean the ability to choose what one will or will not do.

Which items on this list are most important to you? Why? What items would you add or remove from this list?

Personally, I think any list over six items is too long. Research has shown we focus best on seven or fewer items. I would merge 1 and 4, drop 5 to emphasize 6 and 7.

Maybe no one has any comments, but it seems like this could help people focus on particular concerns.

Outside the Activists

Ari and members of ASAN deserve credit for trying to increase awareness of adults with autism and their unique needs. They are voices that should be heard. But, what of adults with autism spectrum disorders who disagree with some dominant ASAN positions? It often felt those were not only unwelcome, but disliked by ASAN members.

Understand: I encourage people to learn about ASAN and know that it is serving an important purpose. If your personality is suited for it, I think ASAN would benefit from gaining more members who can work within an activist organization. I'm definitely more restrained in my mindset. I'm also not aligned with the dominant political views of ASAN members, which was uncomfortable.

Over time, ASAN will evolve and I have great hope that it will develop into an organization with divergent views. Ideally, there will be a realization that we want services, supports, and tolerance. Not all autistic people share the same views on autism.

At the Autism Society of America conference there was a Townhall of People on the Spectrum. (I might have that title incorrect, but the concept is clear.) I won't reveal names or give any direct statements, but I want to explain my personal reaction to some of the thoughts expressed in the Townhall and during ASA. These views reflected some of the statements I read on the ASAN mailing list, before I left the list. I do not know which people at ASA were or were not ASAN members, so do not assume these comments are universal.

1) Autism is a gift, not a disorder.

I do consider myself disabled. I am not "gifted" with autism, palsy, migraines, or social anxiety. Autism is not a blessing, nor is it a minor difference. For me, it is crippling to be so sensitive to stimuli. It is crippling, socially, to not understand people. Just as I cannot deny my right arm is atrophied from a palsy, I cannot deny I have "social atrophy" caused by whatever is different in my wiring. I have talents that might be associated with my neurology, but I'm not sure they outweigh the skills I lack. Everyone feels that way sometimes, I suppose. I dislike being "autistic" on the bad days. (I do not "embrace" my autism, but I also never embraced my other limitations.)

I don't like the word "disorder" in ASD and wish something else were used. "Autism" by itself seems much better than "ASD" since that includes the disorder. I also don't care for the "spectrum" language, but have nothing better to offer. I do think my needs and experiences differ from those of people I have met with classic autism.

2) The families searching for a cure are wrong and selfish.

I cannot say that. I have no idea if it is wrong or not because I'm not a parent. Kanner's autism (classic autism) is horrible. Don't try to argue that the child with a bloody and bruised forehead, bleeding fingers, and missing clumps of hair is simply an example of diversity. I can't imagine the exhaustion the parents feel trying to protect a child engaging in self-injurious behaviors to that extreme. I doubt I'd sleep at night. Who am I to tell parents who spend every waking moment protecting their children that they are wrong to want a cure for these symptoms, at the very least?

Parents seeking a cure are not all selfish. Some are, I am sure, because they want a "normal" child. Others simply fear that their children will be harmed or will harm themselves. These parents don't want a cure simply for reasons of ego -- they want a cure because they wonder what will happen after the child is "alone" in the world. Maybe the fears reflect shortcomings in how we care for people as a society, but the parents have to deal with how life is, not how it should be.

3) Protests have to be loud.

No, they don't. You don't need to destroy books, yell at managers of Toys R Us, or picket against Autism Speaks to be an effective self-advocate. In fact, many forms of loud protest feed the worst stereotypes about autism. Those of us who would rather see teach-ins and peaceful protests are not accepting the way things are, but we have chosen a different path towards change. Riots didn't always help in the 1960s, 70s, or even 80s. I know, because I was in Los Angeles during the Rodney King affair. All the violence did was reinforce ignorant stereotypes and destroy good people. I realize self-advocates aren't calling for riots, but my point is that disruptive behavior seldom changes hearts and minds. I choose a different path.

4) Certain people are traitors.

Actually, I have read and heard worse than "traitor" used for these people with autism who have chosen to work within some organizations or research areas. They are not "traitors" or even "self-loathing" autistics. Someone compared a writer with autism to being a gay evangelical opposed to gay rights or even seeking to cure homosexuality. That's hyperbole, I hope. I think there are people, like myself, who simply do hope that education and cooperation is more helpful over the long-term than shouting and getting angry.

5) The medical establishment (especially the mental health establishment) is our enemy.

Yes, I heard the word "enemy" used. I'm torn on this. There is no doubt that psychology has a history of misuse, and I have written about that. But, I think most people in the medical and mental health professions are well-intentioned and would listen to people with autism if we engaged the professionals in a polite and reasonable manner. If we could put our views into words, explaining there are a variety of views within the autism community and those views deserve respect and consideration, things might improve between clinicians, researchers, and people with autism.

These are simply my views. I want a nice, quiet, logical discussion of how to pursue equal opportunities for individuals with autism. I'm not a radical protester, and I understand that about myself. Anger might be justified, but I cannot function when angry or when around angry people. I don't know why, but strong emotions overwhelm me and lead to a "flight" reaction. I leave tense situations.

Again, I appreciate ASAN and all self-advocates. I simply think it would be best if we all demonstrated more tolerance and understanding. Some people are wrong; I'm not claiming all views are equal or even reasonable. But, education and rational discussion might help correct those people who are mistaken about what it means to be a person with autism.

Let us all learn to embrace not only physical and emotional differences, but also variety of opinion. After all, my views might be incorrect, too.

Wednesday, July 14, 2010

Jobs and Autism

This post links back to Comet's Corner and I encourage visitors to read the comments there.

One of the important questions we face right now is how to help individuals locate employment. This is a problem across all socioeconomic divisions and for people with or without any special needs. But, what can we do for individuals with ASDs? Is there anything we can do right now?

At the Autism Society of America conference, I was asked several times if I had any career / general employment tips for people with ASDs. While I have some advice, the reality is that in the current high-unemployment environment it is not unusual for gifted college graduates to be unemployed. Things are tough, period.

I do have a presentation I use when talking about job skills and ASDs, but those skills don't matter to people who cannot even get job interviews. So, maybe some of my readers have general job hunting tips. I can offer advice on workplaces and their complexity, but first you have to be in a workplace.

Thursday, July 8, 2010

The Why of Conferences

It is no secret that I struggle in social situations, including large conferences. So the question is asked why I attend events like the Autism Society of America National Conference, which is this week in Dallas. The simple answer is that I do learn a lot, both "academically" and socially.

Today I met author and blogger Lisa Jo Rudy. She has a book out on how to have fun -- an essential mental health skill when living with someone diagnosed with autism. To learn more about her books and general science writing, visit her website:

http://www.lisarudy.com

Honestly, I don't think my wife and I take enough time to relax. Much of what we would consider "fun" is still intellectually stimulating. They say children learn significant lessons during "free play" (unstructured time). For me, that unstructured time would be spent meandering museums or gardens. Sometimes, you do need to let your mind wander in order to learn even more.

I always thought I learned a lot at places like Magic Mountain or Disneyland. Seriously. Think about the topics raised at a theme park: gravity, pneumatics, centrifugal / centripetal forces, electricity, and more. The "Animatronics" of Disneyland are enough to inspire days or weeks of research.

Children, especially children with disabilities, need time to explore the world. It can be a challenge, though. Lisa Jo Rudy is the parent of an autistic child. She knows a vacation or even day trip can include meltdowns, timeouts, and the stress all families know. Vacations, I have observed, seldom reduce stress unless you are willing to let the days pass at their own pace. (Too many people over-schedule time off.)

I took time off today. I drove to Arlington to get away from the ASA conference. I had no particular plan. It was nice to see more of the Dallas area. Learning to relax without a plan is a skill I haven't fully developed, but should. Learning to tolerate change is a challenge for me. Yet, I did okay today.

Let's all embrace a little unstructured time.

Wednesday, July 7, 2010

Shameless Self-Promotion

Before I head off to Dallas for the Autism Society of America National Conference, I thought I'd engage in a bit of shameless self-promotion. I have created an "online brochure" for my public speaking:

http://www.autisticplace.com/csw/index.html

If you want to learn more about me, there is an essay posted about my formal evaluations for autism.

I have been speaking at conferences, university seminars, and organization events for a decade. Most of my public appearances have addressed language arts education, especially children's literature. Speaking on autism issues came about by accident, when instructors asked me to address their graduate seminars at several universities.

This is more about reaching out to audiences than earning much money. I'm not a "superstar" academic; I'm only one adult with an ASD and a few minor physical disabilities. Whatever I have to say only reflects what I have learned through experience and a handful of research projects.

I also want to encourage people to use The Autistic Place site:

http://www.autisticplace.com

Anyone can blog on the site or use the forums. The newest blog entries appear on the front page, so it's a nice way to promote organizations serving the autism community. I also have the site aggregating major blogs and news about autism research.