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Autism Awareness and the Free Software Community

It’s Autism Awareness Month

April is Autism Awareness month, there are lots of articles about Autism, most of them are at best misleading if not wrong.

The most common error seems to be describing non-verbal Autistic children and then claiming that Autistic people comprise about 1% of the population. The number of non-verbal Autistic children is a lot less than 1% of the population, and at least 1/3 of the people on the Autism Spectrum have good verbal skills – and often talk more than average.

To be precise, they are describing the symptoms of people who would be diagnosed with “Severity 3″ according to the American Psychiatric Association’s Diagnostic and Statistical Manual (the DSM) as applying to all people who are on the Autism Spectrum – even though of the currently diagnosed people probably about 1/3 might be classified as Severity 2 and 1/3 as Severity 1. It seems that severity 1 Autism is going to be the replacement for Asperger Syndrome in the new DSM-5.

The problem with misleading information in regard to what comprises Autism is that parents really don’t want to have a child who’s “abnormal” and search for evidence to make their wishes come true. At the extreme there are parents who can convince themselves that a 4yo non-verbal child isn’t on the Autism Spectrum. When people are given the impression that Autism is only about non-verbal children then they will probably think that a 6yo who can give a half-hour lecture on a topic of interest (regardless of whether the audience is interested) isn’t on the Autism Spectrum. There is also a similar issue with undiagnosed adults, I would have probably got assessed at least a decade earlier if I had learned more about Autism instead of believing some of the stories.

In a quick Google search for “Autism Awareness Month” I haven’t found any clear and accurate information on what Autism is or what should be done about it, so it seems to me that the awareness project has largely been a failure.

The Autism page on Wikipedia [1] and the page for Asperger Syndrome [2] are good places to start reading. By merely pointing to those two Wikipedia pages I’ve made this post a lot more useful than every article I’ve seen in the mainstream media.

To find some useful and insightful posts about Autism awareness you have to add some search terms such as neurodiversity, which turns up posts such as a post by Leah Jane about Autism Acceptance [3]. It seems that the Autism Awareness articles that are most useful at informing people will only be found by people who are already aware of some of the issues.

Most People Who Read this are Geeks

The majority of the readers for my blog come from aggregators that cater to fairly geeky people. Geek culture is largely Aspie culture. So I think that most people who read my blog have a good general knowledge of what people who might be diagnosed with Asperger Syndrome or High Functioning Autism are like – they just think that such people are merely a bit more geeky than is typical for the Free Software community.

So it’s not as if all Autistic people are hidden away somewhere because they can’t live independently. Many of us work in the computer industry and in academia. Probably the majority of people who have a university degree related to science or engineering have had a professor who was on the Autism Spectrum, probably most people who have any significant experience in the computer industry have had colleagues who are on the Spectrum.

After having become used to the geek culture I initially found it difficult to believe that I could be on the Autism Spectrum because I knew heaps of people in the Free Software community who are at least as geeky as me but apparently weren’t on the Autism Spectrum. I now think that the majority of people who are as geeky as me would get diagnosed with Asperger Syndrome (or High Functioning Autism under DSM-5) if they were assessed.

Adult Diagnosis

If you are wondering whether you might be on the Autism Spectrum then it’s worth reading the pages linked from the DSM 5 draft process have the full diagnostic criteria (both for DSM-4 and DSM-5) [4]. Also Glenn Rowe has a web page with tests designed by Professor Simon Baron-Cohen [5] and Leif Ekblad has a project to do long-term analysis of changes to personality test scores which starts with a quick Aspie quiz [6] (and also has lots of links to other relevant sites).

If you think that you might be on the Autism Spectrum (which means Asperger Syndrome in the case of most people who read my blog) then I recommend that you get assessed if possible. As assessment by a psychologist isn’t cheap there is the option of self-diagnosis in which case Chaotic Idealism’s post about self-diagnosis is worth reading [7].

5 comments to Autism Awareness and the Free Software Community

  • there was recently a series on the US PBS (http://www.huffingtonpost.com/2011/04/18/robert-macneil-returns-to_n_850333.html) that only portrayed one of those types of autistics and left out the other 2/3 in its portrayal and left us out of the conversation they were having in their discussion with Autism experts. There idea of what is important to showcase does not match what folks like me see as pressing issues.

  • etbe

    Kevin: I can understand the journalist in question wanting to focus on his own grandson. I think it’s quite OK to have a separate discussion about LFA without involving us. Really the support that is needed by people who can attend a regular school and pass for an NT as an adult is very different to that which is needed by people who can’t attend regular schools or emulate an NT in any way.

    But they should mention that there are other types of Autism. A little note in the introduction noting that they are discussing the 30% of people on the Spectrum who have the most significant issues would improve things a lot.

    While the term “Low Functioning Autism” is controversial at times, it’s use does serve to clarify things.

  • Jean

    Thank you very much for this article, it lighted up my day!

    Thank you also for the link to Leah Jane’s article about Autism Acceptance. Maybe you even could have given it earlier in your post, just after using the word “abnormal”, to remind people that this is a very wrong word to use, that Autistic people are not “abnormal”, but neuro-atypical.

  • etbe

    http://en.wikipedia.org/wiki/Scare_quotes

    Jean: I hope that most readers would understand my use of scare quotes around “abnormal”. It seems to me that the use of the word “abnormal” in terms of ASDs is largely derived from people saying “I’m normal and everyone who isn’t like me isn’t normal”. That puts us in the same situation as most minority groups. Of course there is also use of the word “abnormal” in terms of scientific analysis, but most people aren’t capable of recognising the difference between scientific and regular uses of the word.

    I’m glad you liked my post, in future you might want to include the URL of your blog (or maybe a post that you think is particularly interesting to my readers) when commenting.

  • Jean

    I totally understood the use of square quotes. I’m sorry that my own comment might have been confusing and sounded like a criticism. It was not. I guess I’m just tired to hear that word in my everyday life.

    I will consider contributing with a link or two next time, no problem!

    Thank you again for this very interesting article, I have already forwarded it to a few friends!