Obtaining a diagnosis for a “hidden disability”, such as autism, can be notoriously difficult to do. Especially if you have had to blend in with neurotypical society for sometime.
But what happens when following that hard-won diagnosis, people begin to question its validity? Friends or professionals begin to challenge how you could possibly be autistic because your behaviour doesn’t match rigid ideas of what autism is.
Autistic people know that “autism” is not a linear list of traits that you check yes or no to. The popular analogy of autism being a spectrum of experiences is a more accurate descriptor. For autistic people this is not a complex issue – we all find comfort or discomfort in various and differing sensory or social experiences. To the un-educated, these individual “preferences” may appear self-contradictory.
Why do I enjoy being squished in the front row at a 30,000 capacity rock concert, for example, when I can’t abide a busy supermarket?
The answer is because they are different sensory experiences. A simplistic view would be to reduce both situations to “dealing with crowded spaces” or “dealing with noise” and compare the two. But they are vastly different. At a supermarket the crowd is mobile, you are navigating through unpredictable behaviour – people stop without warning or suddenly turn around. The noise levels spontaneously change, a quiet aisle may be interrupted by a loud tannoy announcement. There is much visual clutter all around.
The noise from a rock concert drowns out all other noise – there are no competing sounds. The sounds are not unexpected, the music is familiar and predictable. Likewise with the sensory experience of touch from other people. It is a constant pressure (a deep pressure, which some autistic people seek out as pleasurable) as opposed to the light, accidental touch of brushing against someone when out shopping (which some autistic people find traumatic).
My, now adult, child has similar seemingly contradictory experiences. Speaking to a small group of people elicits extreme anxiety, while delivering a speech publicly to a large crowd of hundreds is manageable. Why is this? Why is one situation (the more commonly anxiety-inducing one) easier to navigate? “Because when people become so many, all at once, they become almost the same as none.” A singular, homogeneous being rather than a group of individuals to individually interact with.
I also think un-predictability plays a role in this situation too. Addressing a large crowd is a fairly predictable experience, crowds largely behave in expected ways – passively, as an audience. Interacting with smaller groups is a complex social experience, navigating conversational turn-taking and responding to unknown dialogue.
(This analysis also helps to explain why many people are denied autism assessments because they “have friends” – a poor marker for whether an autism assessment is valid but one appropriated by first tier professionals none-the-less. Friendships are based on predictability, when you are friends with someone then you can (fairly accurately) predict how they will respond, in conversation and situationally. Friends are safe.)
Why does any of this matter? If a person is struggling to understand our autistic identity then we can choose to exclude that person from our lives? Some autistic adults may have this privilege of being able to do so, but many autistic adults and children do not.
If the adults questioning such seemingly contradictory behaviours are professionals, with power and influence over autistic lives, then this can become dangerous.
A question that I am regularly asked about my youngest child is, “if change is challenging and causes distress, how do you manage to go away on holiday?”. My answer is always, the changes made by holidaying are far less significant than other changes made to his daily life, and so the changes are experienced as minimal. Our daily routine and structure are the same, we visit the same type of sensory-suitable places, allow for the same amount of “down-time”, bring the same clothes and important belongings, enjoy the same activities and avoid the same intolerable experiences. It’s not rocket science.
Unfortunately the impact of reducing autistic experience to simplistic patterns of generalised autistic-conformity, without analysis of an autistic persons individual needs, is potentially very damaging.
Parents (usually the mother’s), or autistic people themselves, can be accused of lying, or at the very least, treated with scepticism. The implications of this are far reaching – from being denied certain provisions to being formally accused of harming your child. All for the want of true autism understanding, and easily remedied…
Nothing about us, without us.