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?

More than a year ago, in March 2007, PBS Boston station, WBUR broadcast a program about about Portia Iverson, an Emmy-winning Hollywood art director and the author of Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism, and her son Dov who was diagnosed as severely autistic when he was 18 months.

After the Iversons learned how Soma Mukhopadhyay from Bangalore, India has taught her autistic son Tito to communicate through a board with alphabet and numerals written on it, they have invited Mukhopadhyay and Tito to the United States, and Mukhopadhyay has taught the Prompting Method to Dov as well.

Mukhopadhyay is now the Executive Director of HALO (Helping Autism Through Learning and Outreach) – a non-profit organization located in Austin, Texas where she provides 1:1 educational instructional sessions for students with autism and similar disorders.

Iverson, who co-founded the Cure Autism Now Foundation (now Autism Speaks), also runs a web site www.strangeson.com which discusses not only the book but, among other things, the pointing method as well.

A couple of months ago, in February 2008, ABC News showed a story about Carly Fleishman, a thirteen-year-old who has begun to type on the family computer. (You can see the footage if you click on the “play” button in the picture of Carly.)

As I understand, there’s a disagreement whether both Amanda Baggs and these stories are a hoax, and some people cannot believe that a nonverbal autistic person can communicate, make videos, write poetry, or even just be able to type full sentences. You can see some negative opinions like that in the “Comments” to the entry “Your Opinion Requested: Are Non-Verbal People with Autism Intellectually Capable?” on the Autism Blog by Lisa Jo Rudy.

What is the truth? I do not know.

But just think about Stephen Hawking. He cannot talk, he can communicate only through an adaptive device, yet nobody would deny he’s a genius.

Is it really so hard to believe that autistic people who cannot talk are more aware of their surroundings than they can show?

Consider Amanda Baggs, featured in the article “The Truth About Autism: Scientists Reconsider What They Think They Know” by David Wolman in the March 2008 issue of Wired Magazine.

The 27-year-old Amanda Baggs is autistic and “non-verbal” – she cannot speak, but that does not mean she does not communicate. If it wasn’t for technology, nobody would know what she’s thinking, how she’s feeling, and, quite frankly, that she’s a pretty amazing person. Luckily, she can communicate through the DynaVox VMax computer and through her very powerful YouTube videos and her blog Ballastexistenz, has become an advocate for human rights for the disabled and for the acceptance of people like her.

(As a sidenote, I have linked to the “About” page on Amanda Baggs’ blog because that’s where she explains the title of the blog and refers to the “German eugenics movement against disabled people — which, for reference, predated Nazism” and “was heavily influenced by American ideas.” By the way, Stephen Murdoch, the author of IQ: A Smart History of a Failed Idea also wrote about the eugenics movement in his book.)

Baggs’s “In My Language” video, “is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.” I hope you’ll watch it.

David Wolman’s piece also mentions an article by Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, and Laurent Mottron, titled “The Level and Nature of Autistic Intelligence” published in the August 2007 issue of the Psychological Science, a journal of the Association for Psychological Science, published by Blackwell Publishing.

You can’t see the full text of the article unless you are a member of the Association for Psychological Science or have a subscription to the journal, but you can see the abstract.

The first author of the article, Michelle Dawson, is autistic as well. In her blog entry about the article being accepted for publication she writes “there should be a lot more caution than is currently the case, when making assumptions about what autistics can or can’t do. Some serious rethinking is necessary, about intelligence in autism and possibly intelligence in general.”

Current APS President, Morton Ann Gernsbacher, the Vilas Research Professor and Sir Frederic C. Bartlett Professor of Psychology at the University of Wisconsin-Madison, and a co-author of “The Level and Nature of Autistic Intelligence” wrote for the April 2007 issue of the Observer (also published by the APS) an article titled “The True Meaning of Research Participation” which is worth reading as well.