My issue with "self diagnosis".

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A layman cannot self-diagnose. Even med school students and doctors cannot self-diagnose. It's a big no-no.

How can anyone diagnose when there is no uniform, standard criteria for dxing adults? By default, adults are post diagnosed with childhood autism. There is no professionally accepted 'adult diagnostic criteria'. As of now, all adult diagnoses are, technically, totally subjective.

A highly trained and competent medical professional can be wrong. This is something everyone agrees on. I'm more concerned that people self-diagnosed with ASDs believing themselves right 100% of the time. Not even a medical professional is right all of the time.

I have more faith in those who are trained and who have professional and ethical standards to meet than someone who reads a wikipedia page and takes an online test and declares themselves on the spectrum.

Skeksis, you make a good point.

I know someone who said for years that he suffered from Restless Leg Syndrome, though he never saw a doctor to verify his self-diagnosis. Finally, after years of complaining and whingeing and moaning about it, he went to see a doctor and guess what? He doesn't have the syndrome.

And this was in a country with socialised medicine and is a person with a private income, so he had no excuse. It was just more satisfying to get the hairpats and sympathy than to have his self-diagnosis challenged.

I remember my ex saying he had restless leg syndrome too because he had a tenancy to tap his foot when he sit a certain way. So in my car he always sat with the seat way back so he have his legs a certain way so he wouldn't be tapping his feet and shaking the whole car. I think he was self diagnosed with it. He even sat in a chair a certain way. I don't know if he actually had it since he could control it. He just had to sit a certain way is all.

The guy who thought he had RLS all those years, I wonder what he had instead?

whalewatcher, I tip my hat to you.

AASPIRE accepts applicants for research who are self-diagnosed, although I do not know how often they're invited to do research studies.

However, the fact is that most studies specifically want people who have been diagnosed with the ADOS and ADI-R as the gold standard for diagnosis. This doesn't have anything to do with the possible accuracy or lack thereof regarding self-diagnosis (I can think of one professional - Tony Attwood - who has said that anyone who self-diagnoses is likely correct) and everything to do with attempting to establish research standards that to date have not existed. If you look at older studies of Asperger's System, for example, you can find that studies use multiple diagnostic criteria, and some have people who would not have been accepted for another study, which complicates comparisons between studies.

Another complicating factor is as recent research has found, what you are diagnosed with often depends on where you were diagnosed. Some clinics prefer to diagnose autism, some prefer to diagnose AS, some prefer to diagnose PDD-NOS. Some modify diagnoses on the basis of improvement, even though that is not the point of existing diagnoses.

There are multiple reasons that a lot of research will not take self-diagnosed autistic people without proposing that most of them are likely wrong, including the lack of standardized diagnostic protocols.

AASPIRE is not a research institute. It is best described as a pressure / interest / lobbying / self-advocacy group. They also include in their work "adults with and without other disabilities". Therefore, there are no issues of quality assurance.