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.

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[*] http://www.foxnews.com/health/2011/10/11/autism-linked-with-lack-concern-for-personal-reputation-study-finds/

About That 'Stupid' Label...

We aspies/auties get called a lot of names, but one of the most frequent ones is stupid, or some variation of it - ‘dumb’, ‘retard[1]’, ‘dim-witted’, ‘slow’, ‘a bit thick’, etc, etc, the list is endless. Yet in practise we exhibit the full range of intelligence, and many of us who get called these things are extremely intelligent. So why do we get called ‘stupid’ so often?

I think there are many layers of reasons for this, starting with the historical.

Poor performance on IQ tests. In the past many autistics were judged low in IQ as a result of their lack of response to the tests (and possibly many still are). Other factors such as fear of the tester/test surroundings, difficulties with verbal communication, being focussed on other things, or even being in sensory overload, were not taken into account. I feel this one is slowly being overcome, as testers are now using different methods to assess us, and many of those once judged ‘low-functioning’ or ‘low IQ’ are also, with the aid of communicative technology, emerging as perfectly normal in intelligence. To the general public however, the perception is still “autistic = low in intelligence”.

Getting absorbed in our own interests or concerns. Most of us find our special interests and/or our daily organising needs far more interesting, or at least absorbing of our energies, than our social surroundings, which we can often ignore. But this can mean that people who don’t understand how our minds work, or what our needs are, can judge us to be ‘vague’, dim-witted, or ‘useless’.

Poor social skills/eye contact. If we don’t seem to notice many of the ‘little things’ others regard as important, don’t do/say the ‘polite’ things, don’t look at others, blurt out things that seem unrelated to what’s being discussed or happening, or clam up when asked questions, this can also lead others to think us unintelligent.

Auditory processing issues. Many of us, when we do listen to others, find their words can often sound garbled or ‘mashed together’, especially in noisy environments, or when several people are talking, or the speaker has their head turned away and/or speaks softly or high-pitched. It can take anywhere from a couple of seconds to several minutes to decipher what was actually said – and hence we are often slow to respond. (I’ve been called a ‘retard’ for just this reason.)

Social processing issues. When we have deciphered what’s been said, we still have to work out how to respond to it. For most of us, responses are hurriedly pulled out of a mental file of ‘Appropriate Things To Say And Do’, often with a sort of silent prayer that it’s the right one! That too can take a little while, and in the meantime, the person is waiting for a response (or more likely hasn’t waited, but has gone on talking!). If there are several people talking, we tend to get even more behind the play.

Emotional regulation issues. Our emotional responses can often be ‘inappropriate’, or even delayed, as it sometimes takes us a long time to figure out what we feel. Or we feel the emotions, but they aren’t evident in our body language. This can lead others to believe we don’t have the intelligence to properly register what’s happening around us.

Sensory processing issues. And then add on sensory overload to all the above, with background noise, smells, people moving around, visual stimulation of various kinds, and we often can’t keep up with what’s going on, or at least not until we’ve had some time alone to process everything.

Result? We can often appear considerably less than intelligent to others. (Some of them are then very surprised when we do display intelligence, especially in writing.) But even if you feel, or have been made to feel, ‘stupid’, it’s important to remember that we’re actually “not daft, but drowning”!

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[1] I don’t want to get into the whole ‘retard’ debate here [eg see Ellen Seidman’s post at www.parents.com/blogs/to-the-max/2013/03/06/autism/5-things-people-dont-get-about-the-word-retard/ ], suffice to say that I agree with those who would like to see the word banned from everyday conversation.