In some of my roles for organisations, I'm commissioned to review research papers about autistic people.
Some of the findings are startling, and not always in a good way.
In recent days, one paper in particular got my attention. The researchers wanted to know if 'challenging behaviour', or 'problem behaviour' as it is sometimes known, increased or decreased with age, for autistic people.
So, they looked at all sorts of studies that had been done on this.
Hardly any of them had considered autistic adults. The assumption in nearly every one of them was that all autistic people are children. So, nearly every measure of how 'challenging' autistic people are was done on children, not on adults.
They linked to a small number of papers that assessed adults. Most were from years ago, out of date. One was at least fairly recent, dating from 2016. It was indeed looking at 'behaviour' of some autistic adults. It used a scale that was invented in 1996, not far off 25 years ago. The scale is called the SIB-R, although other out-of-date scales are available.
I began looking at the measures in that scale. Remember, readers, these are for autistic adults, not toddlers or primary school children. Here's some of the measures, which I shall put into everyday words:
Being too clingy.
Not doing as we are told.
Laughing without a good enough reason.
Crying without a good enough reason.
Interrupting without permission.
Rocking (in other words, normal autistic stimming)
Twirling their fingers (in other words, normally autistic stimming)
Talking to themselves.
Eating too much or too little.
Staring into space. The person in the photo at the top of the page is staring into space. Deeply challenging, eh?...
Being too worried.
Not able to concentrate.
Sleeping too much.
Being negative about themselves.
Standing too close to someone.
Talking what someone else feels is nonsense.
Well, it's all enough to give anyone indigestion, in my view.
In fact, the autistic adults can score pretty highly for 'challenging behaviour' from being able to tick off things on this list. And teams are able to tell others that the autistic adults are in need of serious interventions and major treatments for their 'challenging behaviour' based on these sorts of humiliating, inappropriate, appalling lists.
What on earth is going on?
How is research still using any such measure, bringing it constantly back to the present day as if it is in some way meaningful as a gauge of our fellow human beings, behaving in perfectly ordinary human ways. Or, behaving in ways that fully respect their autistic neurology and needs?
Are we servants, doing the bidding of nonautistic people, or adults with every right to our own autonomy, our own right to say 'no' and mean 'no'? Whose power-trip is the above list, eh?
We have a duty and a responsibility to review past out-of-date questionnaires, and to refuse to base our knowledge of autistic people on meaningless measures, designed decades ago for children.
Work with autistic people to design meaningful measures of 'behaviour. Measures that include distress, exhaustion, pain, trauma and other very real scenarios in too many autistic lives. Measures that lead to greater understanding of the 'why' of why someone may do something more drastic, for example.
Too much of what passes for fact about autistic lives turns out to be based on stuff that was only true for toddlers, or on measures that are so out of date they should be binned.
No wonder we make so little progress in creating quality of life for the lovely autistic people in society, eh?
Thank you for reading.