Wednesday, 19 February 2014

About That Autism Research

A while back, I was talking with an aspie friend, and I was saying how I've become conscious I need to do more research on autism. I know my own experience with autism well, and something of those I've spoken to, whether online or ‘in real life’, but I really don’t feel I know that much about the broader picture of autism. So, I thought, it’s time to do some serious research. But immediately I start looking, a problem arises – where is the unbiased research about autism? So much of what’s being done by scientists, doctors and other professionals seems to take as its starting point that we are inherently flawed or substandard, and thus that any way in which we differ from NTs is an inferior or ‘pathological’ way of being, ‘proof’ of our ‘faultiness’.

To take just one example – some time ago, some researchers[*] found that when autistics and NTs were given the chance to contribute to charity, with and without observers present in the room, NTs gave far more when someone was present than when they thought they were alone, but autistics gave much the same amount regardless of whether they had company or not.

This could have been framed as an example of inherent honesty or high principles in autistics – but nooooo. Instead, a new term was coined - ‘reputation management’, which, it was decided, we were deficient in!! This, they said, was due to our lack of ‘theory of mind’. The possibility that we might very well know that others will think better of us if we contribute larger amounts to charity, but regard this as irrelevant, judging said charity on its own merits, never seems to have occurred to the researchers. That we might think ‘managing our reputation’ (ie presenting a false image of ourselves) an inherently dishonest, even unethical, thing to do also never seems to have occurred to them. Sigh. Once again, results that could have been structured as ‘autistic-positive’, or at least neutral, instead become ‘autistic-negative’.

A deeper and more worrying example is the research into the ‘causes’ of autism. It too usually seems to take as its starting point the assumption that the world is better off without us, that there is little or nothing positive that we bring to the world. Much of this research has almost ludicrous results – the list of ‘causes’ of autism that appear regularly as ‘Scientists-Have-Found-Possible-Cause-of-Autism’-type articles trumpeted in newspapers or online, includes (ta-dah) …motorway traffic, corn syrup, older mothers, older fathers, diesel fumes, Lyme disease, too much androgen, copper pipes, prematurity, low birth weight, high birth weight (contradict much?), environmental chemicals, organic foods (those last two also seem contradictory), anti-depressants, smoking during pregnancy, diabetes during pregnancy, too little oxytocin (the ‘bonding hormone’), Clomid (it’s your mother’s fault for wanting you), specific facial or finger or other physical features, faulty immune system in the mother, having a big head, being a big baby (really? So how come smallest-birthweight-me has autism, but none of my bigger-brawnier-birthweight-sibs do?), being second or later-born (I’m first-born), being born close together, being a twin, being born via IVF, even being born in summer, circumcision, and the Internet… I kid you not. And this list doesn't include the Hoary Old Standards of refrigerator mothers, vaccines, missing gut enzymes or mercury. (Do you get the feeling the scientists are kind of grasping at straws?)

Some autism research, into the genetics of autism for instance, could be a good thing (eg in convincing many that we are not just ‘badly behaved’, ‘spoiled brats’, etc), but could also be used against us – most especially to develop prenatal tests that could see us become as decimated as those with Downs Syndrome are becoming – and as gays, lesbians, transsexuals, etc, might once have been, if such tests had been devised before the coming of the gay liberation movement.

But where is the research that would actually help us manage our daily lives better, cope with the world better, have fewer meltdowns and sensory overloads, etc, etc; or the research into why, for instance, some autistics can communicate verbally, and some can’t? Where are the surveys to find out just how many autistics there really are amongst the adult population? (I know of only one such, undertaken in the UK, and it has been criticised.) Where is the research that is either autistic-neutral, or autistic-positive?

Nothing less than a total re-framing of the grounds on which research is done, the assumptions behind all of it, is necessary and urgent, when it comes to autism. Anything else is likely to lead to our eventual eradication, and the destruction of our unique contributions to the world.



  1. Hey Pen,

    For some reason this post reminded me of the below article.

    What do you think of that theory? It's an interesting article regardless.

    - Daniel

  2. Together with a couple of other autistic adults, I've been compiling a list of links that offer a more nuanced, positive outlook on autism and how to support both children and adults on the spectrum. The general overview is here: For specific scientific research, we have a tag is also a very good website. Hope this helps!

    (By the way, you don't need to sign up to consult the links, just to become a link contributor. We accept any link contributors who show through their writing that they have a positive attitude towards neurodiversity, with an emphasis on acceptance and inclusion).

  3. Thank you for framing this issue so well. :)
    That SBC charity donation experiment has troubled me, nay, has affronted me since first I read it!

    Upon reading it for the first time I read it as a positive reflection upon Autistic behaviour. The fact that those with Autism were more concerned about giving the right amount for them, to the charity, over and above any consideration of how others might view it.

    A recognition that giving is essentially a private action -- hence the number of anonymous donations we hear of.

    Anyone involved in that specious experiment should be ashamed.

    It showed that Autistics do have a different mindset, but not that they are lacking empathy or theory-of-mind. No the quality it demonstrates so very clearly is altruism!

    It is another fine example of so much research and the modern scientific mindset: rather than devise an experiment, check and process the results and draw conclusions from the evidence, science seems to have devolved in so many cases into: devise a theory, think of something that you can use to argue your case and devise your experiment to show that evidence. To show that evidence without reviewing the results to see if they can be interpreted in any other way.

  4. I had a reply but Blogger ate it.
    Long ramble short:
    Until we have better criteria for diagnosing ASD then we can't tell what makes it more or less prevalent.

    My personal theory is that ASDs are complex systems that seem to be primarily genetic, and now we are in the Information Age it's easier for those on the Spectrum to meet and breed, and so run a higher chance of popping out a low functioning child.