Freaks, Geeks, and Asperger's Syndrome

A while back I came across Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence by Luke Jackson, a thirteen year old boy diagnosed with Asperger's. If you are at all interested in Asperger's, especially if you are trying to get in the Asperger's afflicted mind, this is an excellent resource.

There are many insights in the book, and I'm sure I'll come back to it many times. One early on deals with what makes something an obsession (typically considered bad) instead of a passion (typically considered not bad). Here is what Luke has to say on the matter:

Q: When is an obsession not an obsession?
A: When it is about football.

How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys 'eat, sleep and breathe' football and people seem to think that if someone doesn't, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn't shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same. (my emphasis)

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The unreasonable man

From McGee's Musings is this personal story of someone else who, on learning more about Asperger's Syndrome (in this case, from an article in the New York Times [free registration required]), saw a bit of it in himself. He also references an article in Wired magazine from a while back, called The Geek Syndrome, that focuses on the magazine's target audience: members of the technical professions.

As high-tech has taken the fore-front in business and the world today, geek has become somewhat chic. The techno-nerd's geekiness is somewhat endearing, and the ability of these "geniuses" to focus so intently on what they are doing inspires a bit of awe on the part of non-nerds. Of course, just as often this focus causes a bit of discomfort and confusion, especially if you don't know the nerd, because it is so different from what is socially acceptable.

And if you are not a techno-nerd, if you are just a nerd, then you are for the most part simply a social outcast. The Fresh Air story I mentioned in the last post has an excellent example.

A boy with Asperger's Syndrome is focused on snakes. He knows about everything there is to know about snakes, and can bring snakes into just about any story or subject. If he can't make it about snakes, he doesn't care about it. As it turned out, as a cumulative school project this boy had to prepare a report about the Battle of Gettysburg. The purpose of the project was to teach research and presentation skills. You guessed it - no snakes, the boy didn't care and wasn't doing anything on the project.

Until, that is, the adults in the bunch came up with the idea, "What if we let him do his report on The Snakes at the Battle of Gettysburg?" To make a long story short, this got the boy's attention and he dove right in. To do the project, he had to learn as much or more about the battle and the geography, etc., as any other kid. His project was so good, and so unique, that he was asked to present his project to the entire school. Everyone wanted to hear the presentation about the snakes at the Battle of Gettysburg, and everyone thought it was great.

The kicker here is this: Before this presentation, everyone avoided this boy because all he wanted to talk about was snakes.

I recognize that humans are a social bunch, but it is unfortunate - for both the "typical" and "non-typical" populations - that anything that is different is so shunned, before even being given a chance.

A closing quote from George Bernard Shaw:

The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.

tagged as: Autism, Asperger's Syndrome, Geek Syndrome, Snakes

Interview with Dr. Fred Volkmar

On the May 5, 2004 Fresh Air, Terry interviewed Dr. Fred Volkmar from Yale Child Study Center. As the parent of an autistic teenager (age 13) there was a lot I had already heard or figured out for myself, but there was quite a bit of good new info as well.

Terry also spoke with Michael John Carley, who was diagnosed with Asperger's Syndrome as an adult, not long after his son was diagnosed. I have to admit that when Zeke was first diagnosed and I learned more about the syndrome, one of my first thoughts was, "Boy, I didn't miss it by much. A lot of these things describe me." Good stuff. (BTW, Carley is the executive director of GRASP [Global and Regional Asperger Syndrome Partnership].

Autism Speaks

There are many good organizations out there devoted to autism, some focusing on a cure, others focusing on resources for individuals with autism and their families. One of the newer ones is Autism Speaks, launched on February 25 to coincide with a piece on a Today Show segment (Windows Media Video file) on NBC that same day.

The organization was founded by Bob Wright (vice chairman of GE and chairman and CEO of NBC Universal) and his wife Suzanne. Here's a clip from Bob's welcome message on the site:

The autism community is active, highly motivated, and full of dedicated people involved in a number of effective advocacy organizations. Do we really need a new national fundraising effort?

If my family’s experience is typical, then I think we do. Last March, our then-2 ½-year-old grandson was diagnosed with autism. We responded by immersing ourselves in the literature, consulting with experts, and gathering as much information as we could. What we discovered was discouraging. We had so many questions. And instead of answers, we found a bewildering array of theories and guesses.

The site is filled with good information and resources, including links to all the programs produced by NBC networks (NBC, CNBC, MSNBC, Telemundo) and aired during the week of February 21 under the title, Autism, the hidden epidemic. You can also get a free DVD that has all of the various segments.

Autism

For parents of toddlers around 18 month old, few words are more disturbing than AUTISM. Unfortunately, more and more parents are hearing this word more and more often from their pediatricians. As recently as 30 years ago or less, 1 in 10,000 children were diagnosed with autism. Today, that number is 1 in 166. (You read it right - one in one hundred sixty six - two full orders of magnitude!)

The obvious question that arises from this drastic increase: "Is this because more kids have autism, or are we just getting better at diagnosing it, or what?" The answer, I think, falls into the "or what" category.

As way of background, I am the parent of an autistic son, Zeke, who is now 13 years old. Obviously, I have more than a passing interest in the current state of things in the world of autism, and there are many things to keep up with:

• the search for a cure
• nutritional / medical interventions
• school
• life after school

I've created this blog to help me sort through things for myself and to share what I find.