I recently found copies of old psychological evaluations of Ian.
I didn’t really want to read them because I knew what I would find – the endless succession of ‘didn’t engage’, ‘scored in the low percentile’, ‘disorganised’, ‘an area of weakness’, or, the classic, ‘his overall development in the area is below that expected of a child his age’ — wait, what, for neuro-typical kids, or compared to others with autism spectrum disorders??? I never did get an answer to that one. But it wasn’t happy reading, and it depressed me as I had known it would.
And then I came across this paragraph –
and it all came flooding back.
Watching my son being tested by a stranger was always a trial for me. An hour or more of exquisite anxiety as I watched Ian deliberately underperform.
As his mother, but also as his teacher, I was always appalled by what Ian thought he could get away with. And make no mistake, he knew what he was doing. It was his ‘thing’ : place him in an environment where he got even the slightest sense he was being tested, and he would shut down.
It was more than just a stranger asking him to do things. It was more than him not knowing what might have been required. There was nothing – absolutely nothing – placed in front of him that we hadn’t covered in the classroom. And he sat there, and played dumb.
During this particular session I was very good, sitting in the corner of the room, pretending to mind my own business, watching, cringing …. I think I physically held my mouth closed when Ian wouldn’t point out a triangle. I didn’t utter a squeak when he wouldn’t name the farmyard animals in a picture. But on and on he went, until I just couldn’t take it any more.
“Ian!” I burst out. “Enough! Answer the question.”
And he did.
The psychologist looked up from the table. Perhaps she could feel my pain from across the room. Perhaps I even had smoke coming out of my ears!
She smiled at me in understanding.
“Would you like to take over?”
Well, I didn’t need to be asked twice. I was in Ian’s face so fast he blinked in surprise.
I turned a couple of pages, and we went back over some of the tasks.
With very little prodding from me, Ian engaged – at least well enough (given that he still knew it was a test) to show the psychologist that he knew the answers and could speak for himself.
Way to go, mum! How to skew a psychology evaluation in one easy step …
But that’s why any evaluation of Ian – and potentially any autistic child on the planet – is so damning. It’s like the observer effect – “In physics, observer effect is the disturbance of an observed system by the act of observation”.* In psychology, it’s called the Hawthorn Effect – “The Hawthorne Effect, also called the Observer Effect, is where people in studies change their behavior because they are watched”, although that theory has now been debunked.** (I wonder, though, if it wasn’t debunked more because of the parameters of the test than the lack of validity. We all know that we behave differently when we think someone is watching. I suspect it takes a particularly strong character to not change their behaviour in any way, in any circumstances.)
The fact remains that the minute you try to assess Ian, he changes what you’re trying to assess. Partly because he’s clever. Perhaps also partly because he gets self-conscious — and that term alone opens up a whole can of worms! Self-consciousness and autism do not go hand in hand.*** But again, I call into question – like imagination in autistic people – the notion that just because you can’t measure something doesn’t mean it doesn’t exist.
And so I skewed the results because I wasn’t prepared to allow Ian to get away with it. I guess I couldn’t sit there and watch him let himself down. He knows so much, and is able to give so much of himself, how could I NOT want to share that? How could I let him score so badly on the psych eval when I knew without a shadow of a doubt that he was capable of so much more? Our lessons together had been challenging, but they were also full of fun and laughter, and I wanted to share that. I wanted that to be seen. Yes, my son remains profoundly autistic, but look what he knows. He’s clever and coy, and cheeky, and self-confident. He has a highly developed sense of humour. Look what he can do! Look who he is!
In truth, Ian has no ‘theory of mind’.**** Effectively, he shouldn’t be able to grasp what a stranger expects of him. He shouldn’t BE self conscious. But put him in a standard testing environment – quiet room, table, chairs, psychologist, prescribed forms – and he’ll become about as autistic as you’ll ever see him.
I don’t suppose I’ll be allowed in any more. IF he’s ever evaluated again. He’s an adult now. Do they bother? I wonder …
This morning, as Ian got himself dressed and ready to go to breakfast, I said idly to him “You’re a clever chap, aren’t you?”
“Exactly …” he said.
*** https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.159.8.1422 –
**** https://en.wikipedia.org/wiki/Theory_of_mind )
(“The Leiter-R is an individually administered test designed to assess cognitive functions in children and adolescents ages 2-20. The battery measures nonverbal intelligence in fluid reasoning and visualization, as well as appraisals of visuospatial memory and attention. The test is divided into a visualization and reasoning battery and an attention and memory battery.”) https://libguides.lib.umanitoba.ca/c.php?g=297419&p=2316280