I finally narrowed it down to what I thought the most important points were. Here it is, as I presented it, together with the slides. It’s hugely simplistic, I’m afraid.

Good evening.

You might remember my last presentation about foreigners who might behave differently than what you’re used to and expect.

Today I would like to talk to you about people who are a bit like foreigners in their own country.

Just a brief audience analysis – how many of you have heard the following terms: autism, Asperger’s Disorder? How many of you feel you could explain what these terms mean? (at that point only TWO out of fifteen people raised their hand)

Both Autistic Disorder and Asperger’s Disorder are part of so called Autism Spectrum Disorders or ASD, which also includes PDD-NOS – Pervasive Developmental Disorder – Not Otherwise Specified, also called atypical autism, which is the diagnosis that my eight-year-old received several years ago.

Autistic Disorder was described several decades ago, in 1943. Asperger’s Disorder was first described in 1944.

Asperger’s Disorder is also frequently called “Asperger Syndrome” (with or without apostrophe s), or simply AS. By the way, you might also hear people with Asperger referring to themselves as “Aspies.”

So both the Autistic Disorder and Asperger’s Disorder were described in 1940s – quite a while ago. But they weren’t recognized as a disorder until fairly recently. Only in 1994, just fifteen years ago, ASD was included in the DSM-IV, the fourth edition of the Diagnostic and Statistical Manual used by psychiatrists to diagnose mental illness.

Because autism is seen as a spectrum disorder, one person diagnosed with ASD (including PDD-NOS and Asperger’s) might be completely different than another. On one end of the spectrum you find have people who are severely affected – the might have no language and very limited or no ability to interact with others, at least not without the help of assistive technology. At the other end of the spectrum you might find people who have well developed language and average to superior intelligence.

So what is autism? It is a mental, developmental, or neurological disorder. Basically autism is a result of a different or atypical development of the brain.

To receive a diagnosis of autism a person needs to meet several diagnostic criteria. The full list is very long, but it boils down to three things: impairment in social interaction and communication, and repetitive and stereotyped patterns of behavior, interests, and activities.

Absent from the current diagnostic criteria are sensory issues that are quite common among people on the spectrum.

Let’s talk about social interaction first. People on the spectrum might have very limited eye contact, and as a result might be seen as shy, not interested, or hiding something. But for instance my son seems to be afraid of looking at eyes. He actually used to freak out when he saw a toy with abnormally large eyes.

People on the spectrum also have a hard time reading nonverbal clues — the tone of voice, facial expressions and body postures and gestures. Because of that might not realize, sometimes have no idea, when someone is insincere, or bored, or angry. That might lead to huge trouble in social situations. People on the spectrum are frequently laughed at and bullied, and also tricked or cheated.

The impairment in communication in people on the “light” end of the spectrum might manifest itself in their use and understanding of language. Aspies frequently do not understand the need for to “chit chat” or do “small talk” and are often not able to do that. On the other hand, they might have a tendency to go on and on and on about a topic that they passionately care about.

People on the spectrum also tend to be very direct and honest and often unintentionally appear rude because of that directness.

Also, their understanding of language, especially the semantics and pragmatics, is frequently impaired as well. They are frequently unable to read between the lines – understand the subtext, innuendo, or sarcasm.

All of the above issues can lead to huge problems with relationships. And it’s a myth that people on the autism spectrum don’t care about relationships. They do, but because autistic brains are simply wired differently, people on the autism spectrum have a really hard time figuring out how to make and keep friends and how to fit in, and do not understand why they are being excluded. They are expected “to be normal” – to take words from the title of a book. (By the way, Pretending to Be Normal: Living With Asperger’s Syndrome is a wonderful book. I highly recommend it for young adults (end of high school, college, and just out of college) as an “uplifting” story that things should get better in time)

But without specialized behavioral and communication skills instruction, people on the autism spectrum simply don’t know how to be “normal,” because autism is a neurological disability that prevents those affected from understanding the unwritten rules of social relationships, to use words from a title of another excellent book about autism. (The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism)

Thank you for listening. Any questions?

Responding to her comment, I wrote in the post scriptum “I doubt that anyone visiting my site would not know what NT, mentioned by Debra, means — but just in case — NT is short for ‘neurotypical’ or, as most people who don’t know any better would probably say — ‘normal.’”

Then I remembered seeing on the Attention Deficit Hyperactivity Disorder Forums a question about what NT means and wondered whether, even though within the “autistic” community pretty much everyone knows what the acronym stands for, others are not as familiar with this term.

The NTs who have a good sense of humor and are not easily offended might find amusing the “Institute for the Study of the Neurologically Typical” site, especially the page listing the “diagnostic criteria for 301.666 Normal Personality Disorder.”

That site reminds me of a joke Stephen Shore made during the presentation I saw nearly a year ago (see the entry  “Understanding Autism (for Dummies, by Stephen Shore)” from April 10, 2008) – that his next book will be titled “Understanding Neurotypicals for Dummies.” He even had a slide of a mock book cover with the bullet points saying things like “learn to decode nonspectrum behavior”; “educate children on radical acceptance of differences” (I’m not sure what he meant here, I’m afraid); “successfully communicate without eye contact.”

As I’m still learning and sometimes have trouble navigating American social customs, I could relate to the joke.

Along the similar lines, but much more philosophical is the blog NTs Are Weird written by an adult male who’s autistic.

NTs Are Weird is full of “opinion” entries, as well as plenty of passionate advocacy and “issues” posts. It also includes quite a bit of personal (sometimes very personal) reflections. Overall I found it a fascinating read, and quite philosophical too.

Reading it made me wonder if my son will think and feel like that when he grows up, and I had a bit eerie feeling of reading letters from the future. But it also gave me a desperately sought glimpse into what the world looks like to an autistic adult.

I remember having a somewhat similar feeling when I read posts of adult ADHDers on the Attention Deficit Hyperactivity Disorder Forums but also remembered how much some of them disagreed with the way the parents on the forum thought the ADHD kids should be handled.

I wonder what the author of NTs Are Weird and other adults with autism think of the parents’ posts and blogs and how much they hate the parents for saying how stressed or upset they are sometimes by their kids’ behavior. I frequently wonder myself how much my son would hate me, if he knew what I wrote about him (especially in the first post).

Yet, we don’t really hate our children, and at least in my case I actually don’t wish my son were a typical child. He’s very interesting the way he is. I just wish I knew how to deal with some of his “moments” and how to keep “cool” at those times. That is still hard.

I do hope my son will be able to express himself in the future as well as the author of NTs Are Weird. He’s not much of a talker, he doesn’t like handwriting, and doesn’t know how to type (yet, I’ll make sure he learns). So I don’t really know what’s going on in this 2e head of his.

Going back to NTs Are Weird, I got very intrigued by the post “Disability Awareness Day” (Sepember 28th, 2008)  and was somewhat surprised by the negative responses to the idea #2, because I like this idea the most. I would add the following exercise to the list — go into a room with strobe lights flashing, music blaring and several TVs turned on, each to a different channel. Have a teacher read a story and then quiz the students on how much they remember from the story and if they do not remember much, have the teacher complain that they should have “tried harder” to concentrate on the story.

I’m also curious though why the author of the NTs Are Weird thinks “ABA is unethical” (“Negative Definitions,” January 10th, 2009) I did not read the entire NTs Are Weird but I did use the search engine and could not find more posts about that. ABA seems to be like a religious doctrine in “correcting” the behaviors of children with autism – everyone seems to be expected to do it and believe in its efficacy.

Cathy Corman, a former assistant professor of history at Harvard University, with a Ph.D. from Yale’s Program in American Studies, and a mother of triplets all of whom have learning differences and ADD, is a co-author of Positively ADD: Real Success Stories to Inspire Your Dreams, a book for 9 to 12-year-olds which she co-wrote with Dr. Edward M. Hallowell, published in 2006 by the Walker Books for Young Readers.

Positively ADD: Real Success Stories to Inspire Your Dreams profiles seventeen successful adults with ADHD:

(disclaimer: I am not 100% sure that the links I posted are about the same person or just a person with the same name, if you think I posted an incorrect link, or think a different link would be more suitable, please do let me know.)

• Chester James Carville Jr., political strategist
• Scott Eyre, relief pitcher, Chicago Cubs
• Carolyn O’Neal, retired school principal
• David Neeleman, founder, chairman, and CEO, JetBlue Airlines (this link will bring you to a different list of “Successful Adults with LD” assembled by the Smart Kids with Learning Disabilities organization, with David Neeleman’s name is on top)
• Karl V. Euler V, police officer
• Heather Long, graduate student, Rhodes Scholar
• Devin M. Barclay, professional soccer player, Columbus Crew
• Margaret Turano, director, marketing communications, Amicas
• Richard Joseph Zienowicz, MD, FAGS, plastic and reconstructive surgeon
• Sedan Paramanandam Manickam, musician
• Sharon Wohlmuth, photographer
• Harbhajan Singh Khalsa, yogic healer
• Oman Frame, teacher
• Clyde B. Anderson, chairman, Books-A-Million
• Jon Bonnell, chef
• Linda Pinney, entrepreneur, chief business officer, Asteres
• Clarence Page, journalist, Chicago Tribune

As Corman reported, she got the inspiration to write a book about successful people with ADHD during a trip with her family – while on a flight she read an article about a successful person with ADD and after giving the article to her son to read, he started asking “Could I do that?” as if asking “Could I have a good life as well, like this person?”

Corman discovered that there were no books for children about adults thriving with ADD, people who are happy in life, showing that ADHD doesn’t have to hold one back.

The people Corman and Hallowell interviewed for the book recall having lots of trouble in school, being kicked out of class, feeling ashamed and guilty, or flunking college. However, as adults, they have found a way to turn their ADHD into a “gift” – they come to terms with the diagnosis and found their strengths coming from it.

In closing, Corman emphasized that children with ADHD also need to find a passion, find something that’s fun and that they’re good at, just like the people profiled in Positively ADD: Real Success Stories to Inspire Your Dreams.

You can also read what another successful person (an attorney!) with ADD had to say about this show on the discussion about the series carried on the ADD Forums discussion board.

I already mentioned Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, by Stephen Shore, published by the Autism Asperger Publishing Company (AAPC), in the post “Understanding Autism (for Dummies, by Stephen Shore)” but I’d like to add a few words about it.

It’s an autobiography and while someone might think that writing an autobiography is an exercise in vanity, what makes this autobiography so interesting is reading about growing up and life in general from a point of view of a person with autism.

Overall, Beyond the Wall, game me a lot of “Oh, that’s why..” moments. Stephen Shore remembers (and writes about) events that happened when he was very young and pretty much non-verbal. He explains how he could not explain to his parents that the reason he hated haircuts was because he could feel each single hair being pulled and that it hurt. He also recalled how trips to a grocery store used to cause sensory overload because of the overpowering mixture of smells in the produce section and the flickering of lights overhead. After reading that I finally understood my son’s behavior whenever we go shopping – the sensory overload may be just too overwhelming for him and that’s why he goes “wild”.

The parts about living with autism as an adult are quite fascinating too and point out how some things that most people overlook might be overwhelming to people with sensory differences – such as (but not only) the ticking of the clock at night, the singing birds in the morning, or the smell of people on public transportation. (Personally, the ticking of the clock at night used to drive me nuts so much I got a digital clock which doesn’t bother me, as long as I turn the clock so that the green numbers “shine” in another direction and not in my eyes.)

Check it out, I hope you’ll find this book interesting and learn something new as well.