Tuesday, January 29, 2008

Speaking Engagements

I recently spoke at the Autism Society of Minnesota. It was a good experience, overall, and I think the audience enjoyed the presentation. When I speak, I never know how well things went, but my wife noticed the comments people made because she was sitting in the audience.

AuSM has graciously asked me to repeat the presentation at their annual convention. The AuSM 2008 Annual Convention will be in Minneapolis, April 30 through May 3. I look forward to having a larger audience before I travel to Orlando for the national ASA conference.

When I speak to a audience of parents and teachers, I feel like I'm making a genuine difference. When I sit and write, I'm never sure that others are affected. Despite being nervous when speaking, there's a real sense of connection during a presentation.

School and Stress

At the start of every semester, I suffer from extreme anxiety. I dislike learning how new classes will function. I also have a general distaste for classes that seem to repeat the same basic themes and topics. As a graduate student in any given field, the primary figures in the field and the major works are mention again and again and again. I'm tired of hearing the same basic notions.

It is hard for me to remain on task when I am so bored. The problem with being bored is that I end up either working on other projects during class or I end up speaking up and giving my opinions too often.

Like so many ASD individuals, I feel like I want to rush the courses along. Tell me something exciting to me. Interest me. Instead, I had a professor talking about writing paragraphs tonight. I'm nearly 40 years old. I know the "composition" paragraph style calls for a topic, some supporting data, and a conclusion. Yes, I get it. And I still think it is stupid. That's why most people think academics are full of BS.

There's little question that I would learn more sitting at home with my books. The impulse to walk out of a class and return to my comfortable books is very strong. I hate wasting my time.

Friday, January 18, 2008

Freezing Weather

This coming weekend is supposed to remain below 0F, with some areas of Minnesota experiencing a windchill of -50F or worse. Sponsors have cancelled a major skiing competition due to safety concerns. It was deemed too cold for ice sculptors to work on the famous Winter Carnival attractions in St. Paul. It's cold... even for Minnesota.

Cold is painful. Very painful. Even indoors, my joints ache. My skin itches and burns from the low humidity. Outside, I have to wear gloves and hats, which I hate — as readers already know.

I've tried lotions, but they bother me. It's a sensation I dislike intensely, the slick oily nature of lotions. When I don't use the lotions, I end up with bleeding around my fingertips, the skin splitting along the ridges of my fingerprints. I can't explain why, but I hate lotion so much that bleeding is almost better.

Spring cannot come soon enough.

When I read about SAD, I don't quite get the "sunlight" issue. I don't care about sunlight. I work at night, usually. Winter only bothers me because it is too cold here. I hate extreme cold more than I hate extreme heat. I never imagined that was possible, but it is. I'd trade 0F for 90F or even 100F anytime. I know, since I come from a place where 110F is common in the summer.

I hated the heat. I couldn't wait to leave it behind. Now, I realize the mild annoyances of heat don't compare to severe winters.

If you hate clothing, winters aren't for you. Even the nicest sweaters can itch when you have dry skin. Layering is a hassle. Clothes on, clothes off... on... off. It drives me nuts to be fussing with gloves, jackets, and sweaters. I struggle with sleeves as it is. Struggling several times a day is just ludicrous.

Two years is a long time to keep tolerating this place. I wasn't designed for this area, especially the metro.

Saturday, January 12, 2008

Debates and Autism

This is a rant, based on exchanges elsewhere…

One of the unavoidable aspects of writing and speaking publicly about autism is that I am certain to offend someone with nearly every sentence I type or speak.

I have been told I don't know "anything at all" about autism or its affects on a family.

Let's be very clear: I am officially diagnosed as "high-functioning autistic" and have been "evaluated" (studied? examined?) by neurologists, psychologists, and psychiatrists. Even though I don't like labels, in this case it is not merely a label but a qualification that I believe gives me some authority to say, "Here is what I experienced."

I do not pretend to know any universal truths about how autism is experienced by individuals, nor do any of the experts I know. I can only write and speak to my own experiences.

Obviously, being able to write and speak publicly is a gift not shared by every individual with a developmental disorder. I am extremely fortunate, and I know that. I also know that my parents did an incredible job raising me in difficult circumstances. Trust me, they did not have an easy time raising me... and I'm still difficult to deal with at times!

What I don't care for are the endless debates and angry exchanges I see online and in person. We need to cooperate more and work on multiple, parallel issues for autistic individuals, their families, and future generations. No one set of questions is more important than another — my desire to teach survival skills is important, but so is the work geneticists conduct. I help current students while research might help future students.

Everyone knows the line: "Can't we all just get along?" Clearly, at least right now, the answer is "No." That's sad.

Speaking Engagements

I am scheduled to speak at a workshop sponsored by the Autism Society of Minnesota on January 23, in St. Paul. If anyone cares to meet me and hear me ramble about university students with autism spectrum disorders, this is a good opportunity. (Visit http://www.ausm.org for more information.)

The Autism Society of America has also invited me to conduct one of their 75-minute conference sessions at the 39th Annual ASA National Convention. This event will be in Orlando July 9-12. I'll post more details once I know the date and time of my conference session. (Visit http://www.autism-society.org for more information on ASA.)

As always, I do my best to meet individually with parents, teachers, and students to offer whatever advice / insights I can.

Tuesday, January 8, 2008

Blaming Mercury / Thimerosal

Today the media are reporting an analysis of autism rates in California since the removal of thimerosal from most vaccines. The autism rate, or more accurately the rate of diagnoses, is still climbing in the state.

Study challenges drug's role in autism
By Jia-Rui Chong, Los Angeles Times Staff Writer
5:15 PM PST, January 7, 2008

The prevalence of autism in California children continued to rise after many vaccine manufacturers started to remove the mercury-based preservative thimerosal in 1999, suggesting that the chemical was not a primary cause of the disorder, according to a study released Monday.

The analysis found that from 2004 to 2007, when exposure to thimerosal dropped significantly for 3- to 5-year-olds, the rate continued to increase in that group from 3.0 to 4.1 per 1,000 children.

"If mercury exposure in vaccines was a major cause of autism, then the number of ... affected kids should have diminished once they were no longer exposed to thimerosal," said Dr. Robert Schechter, lead author of the study and a medical officer at the state Department of Public Health. "That is not what we found."

The study, published in the Archives of General Psychiatry, is the latest in a series that has investigated the connection between thimerosal and autism. The majority have found no association.

But the latest findings failed to convince some parents and advocacy groups that have long blamed mercury, a neurotoxin, for the disorder.

"This study presents a greatly over-simplified explanation of a very complex problem," said Claire Bothwell, chairwoman of the board at the National Autism Association, which works on behalf of families with autism. "Rising numbers do not confirm that thimerosal never had a role."

These advocates make me want to scream. They either do not understand the science or they are simplifying the standard caveats in scientific research. I fear the desire to blame someone, anyone, for autism is leading some groups and individuals to reach statistically implausible
conclusions.

Maybe thimerosal and other factors are triggers for a genetic predisposition. Maybe. But that is a huge maybe.

Let's be brutally honest: the only people likely to benefit from blaming mercury are lawyers and a handful of "experts" (using the term loosely) promoting alternative therapies.

No, drug companies are not always honest. There have been and are catastrophic conditions caused by exposure to various chemicals in medications. I am not about to claim the drug companies should be trusted. Unfortunately, any testing is going to be paid for by the
drug companies — you can't bill taxpayers for every drug test. Such testing should be done by government and university labs, paid for via special patent fees.

I have no doubt some environmental factors are at work, but I also think way too much attention is being given to a single suspect... one that looks increasingly unlikely based on statistical epidemiology. It's time to start looking for other environmental agents, from pesticides to heavy metals in drinking water, and stop suffering from tunnel vision.

Better diagnostic criteria, improved awareness of autism, and other factors are merging to create an increase in the "autism rate" in the United States. We must admit causal factors are only a part of the increase.