The Wrong Trousers

My mother emailed me a link to this David Cox piece for the BBC on genetic research into autism and asked me what I thought about it. Mostly what I think is that the truly important bit got kept back until the very end.

But while such trials could undoubtedly result in enormous benefits for the children involved and their families, Fletcher-Watson is still sceptical about their depiction as therapies for autism, profound or otherwise. She would prefer to see them characterised as treatments for intellectual disability.

"I believe that when people talk about these single-gene cases of autism, they are being disingenuous," says Fletcher-Watson. "They are talking about single-gene causes of intellectual disability, perhaps many of whom are also autistic. But there is funding available for research to address autism, active parent campaign groups and all sorts of resources, in a way that there is not for intellectual disability."

In other words, there’s not really any money, per se, in researching intellectual disability, so genetic researchers round up a bunch of autistic people who also have an intellectual disability and simply call it autism research in order to get funding. In effect, they are studying the wrong genes.

This is vaguely akin to the fact that the only autism “treatment” that insurance, including Medicaid, will pay for is the fundamentally discredited and deceptive (and yet so-called “evidence-based”) Applied Behavioral Analysis, so either providers just inflict ABA on autistic people or—sometimes, apparently—just call what it is they do “ABA” in order to get paid for it.

(Never forget.)

The only other thing I’d note from the article is that it once again portrays the options of what kinds of autistic people there are in such a way as to leave me out.

But while this can offer huge benefits for these families, the concept of genetic research is not viewed with universal positivity across the autistic community. Autism is a vast spectrum, ranging from those with severe impairments in physical and mental development which will never allow them to live independently, to others with far fewer support needs who view their autism as an identity and advantage, and oppose depictions of autism as a disorder.

“Some of us,” as I’ve said “are neither high support needs nor savant polymaths.” As the one-time subhead of my former autism-specific blog continued:

As the pendulum swings between coverage of autism as the one to coverage of autism as the other, people like me just get clobbered in the head as the bob goes by.

Beyond all of that, I don’t have much to say about genetic research into autism, although I do understand the reluctance and the criticism. I just haven’t engaged with it much, and (in fact) I participate in research from SPARK (Simons Powering Autism Research for Knowledge) out of the Simons Foundation, whose payments occasionally are the difference between being able to afford food and litter for my cat and not.

Make of that what you will.