John Elder Robison on American Autism research

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Sex, Lies, and Autism Research - getting value for our money

Delivering benefits to the needy is a very hard sell if we are talking about yet another government expenditure.

Autistic people and parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.
John Elder Robison

Well he got that right!

It's about time someone said this, it's been the elephant in the room. Many thanks to John Robison for articulating this huge issue and to you APOM for this thread, which I have moved to this forum as it affects everyone on the spectrum, in one way or another.

I hope JR will contribute to this thread as he is a member here who posts occasionally. I second the spirit of his comments: a lot of research by NTs on autism in the past has been platitudinous, patriarchal, patronising, prejudiced and extremely gender biased. Some of the conclusions and discussions are so trapped in tunnel vision that no light ever gets in, nor do the researchers notice its absence. The sampling is highly flawed in most cases, because diagnostic criteria and procedure is flawed, and the paradigm that applies is a big issue that is very rarely discussed by AS people, though that is not surprising as relatively few will have studied the philosophy of scientific enquiry formally or informally.
It is likely that the same is true of the vast majority of the researchers.

http://www.chronicle.com/article/Autism ... digm/47033

Excerpt:

In many areas of human neurodiversity, including autism, we still don't know the answers to many basic questions. There is still not even agreement on the basic definitions of autism, Asperger's, and related concepts. In the meantime we are applying lots of stereotypes and negative descriptions to autistics that we would not dream of using to describe racial or ethnic groups. It's high time that colleges and universities got out in the lead to fight these common prejudices. The rhetoric coming out of higher education needs to match up to the reality of higher education as a common avocation for autistic people.

We are still searching for appropriate metaphors and language to describe and explain human neurodiversity. For instance, we've moved beyond viewing autism as the result of "refrigerator mothers" —cold, distant —as was most visibly suggested by Bruno Bettelheim in the 1960s. We're just starting to move beyond defining it as a "series of impairments." If we call autism a "disorder," is that being humane and offering sympathy and aid, or is it judgmental in a way that stereotypes, lowers expectations, and ignores variation in outcomes?

But if it is not correct to speak of a disorder, what exactly is the sensible language and what are the accompanying conceptual frames? The commonly heard distinction between "high functioning" and "low functioning" ignores extreme variations in the skills of the autistic individual, and it also seems to classify a group of human beings as somehow unfit. When it comes to discourse on the autism spectrum, we should be humane, respect human difference and individuality, respect the need for possible assistance, and recognize the diversity within the spectrum, and all that without assuming that nonautistic ways of viewing the world are always the right ones.

The common public perception is that autism is about sick or diseased children, and it is up to the academic community to help correct that picture. If we look at the data, it seems easy to find lots of autistic children yet relatively hard, at least by the standards of common public perception, to find a commensurate number of autistic adults. For instance a typical figure suggests that the United States has about 500,000 autistic children, for a prevalence in the range of 1 in 150. That would mean that the United States also has 1.5 million autistic adults. (Those numbers are very rough approximations and still being debated.)

My belief is that the United States does in fact have more than one million autistic adults. But if there are so many autistic adults, the obvious question is: Where are they? Who are they? Are they all locked up in institutions? It is sometimes suggested that there must be a very recent "epidemic" of autism. But the epidemiological measurements of autism prevalence —if we acknowledge deliberate changes in diagnostic criteria, awareness, service availability, case-finding methods, and so on over time —do not indicate large unexplained increases. You could argue for a gradual increase in the rate of autism, as existing evidence cannot rule out all changes (I think the rate is more likely constant over time), but still the growth would be so incremental that, again, a sensible estimate would be more than a million autistic adults in the United States.

It's a little tricky to talk or write about the autistics who may work in your institution. If you work at a college or university, there is a good chance you are interacting with people on the autism spectrum on a very regular basis. Maybe the reaction of the reader is to draw up a mental list of people in the workplace and start applying various stereotypes to them. Maybe you'll be on the lookout at the next dean's meeting for people who exhibit "autistic traits" and then gossip about those perceptions to your friends.

That's human nature, but I'm suggesting an alternative tack. Embrace individualism. Question your stereotypes. Maybe even look in the mirror. When you're done, it's likely that you'll see far more talent, in far more unorthodox varieties, than you expected.

The cultural bias of the current "paradigm" is almost never noticed, let alone discussed:

https://blogs.scientificamerican.com/gu ... diagnoses/

If you read the whole of it, a different theme emerges.

That wasn't my point at all, though I don't have the inclination to continue here.