Tinyletter 3: Look me in the eye: on different kinds of expertise

Hello,

When I first plucked up the courage to talk to my GP about whether I might be autistic, he listened to my account, agreed that the case history sounded right, and then asked what I wanted to do next. ‘It all depends what you want,’ he said. ‘A formal diagnosis could be stressful, and won’t be quick. You might not need it. All the tests are online now, and you can do the research yourself.’

It was, in retrospect, a sage piece of advice. Of course, I ignored it. I mean, I read every book I could find, took all the tests, and was surprised how far over the line they placed me. I was expecting to be borderline; I was not. I sought out other autistic women and found that my experiences matched theirs. It was a surprisingly delirious experience to suddenly feel very normal within this group, after a whole life as an outlier.

The problem was that, after a while, I wanted someone else – an expert – to agree with me. After waiting eighteen months for an appointment at a specialist NHS clinic for adult women, with another year’s wait in prospect, I became impatient. I used an insurance policy to arrange a private appointment with a psychiatrist.

It’s not a comfortable thing to recount a lifetime of being mystifyingly out of joint with the world. But he listened, and agreed with me that what I reported was a classic case history of Asperger Syndrome. He expressed surprise, though, that I displayed a sense of humour and clearly had a creative career. I expressed surprise that he wasn’t aware of the huge number of creative, funny autistic people out there. It should, I suppose have rung alarm bells.

Still, he referred me for standardised testing, and I agreed to go along. The appointment was a fortnight ago. When I sat down, I saw that there was a child’s tangram puzzle on the table, and I thought, They surely won’t expect me to do that. They did. I obediently fitted the triangles and rhombuses together to form a picture of a cat.

‘What do you think that is?’ said the woman.

‘A cat,’ I said, ‘obviously.’

‘Well done,’ she said, and handed me a wordless children’s book, asking me to tell the story.

‘You do know that I’m a professional writer?’ I said. ‘I lecture in Creative Writing at university and have just finished a PhD?’

‘Great,’ she said. I talked through the story, feeling ashamed of myself, somehow. Then she asked me a few things about my life, about friendships and attitudes, what I like to do in my spare time. I thought, I’ve talked about all of this before. But still, I regurgitated the whole lot again – the agonising dislocation. I felt sick by the end of it.

‘Well,’ she said, ‘as you might have guessed, it didn’t so much matter what you said, as what I observed you doing as you said it.’

What? I thought. So you made me dredge the worst depths of my feelings, just to ignore them and think you know better?

I’ll score the test,’ she said, ‘and get back to you. But the problem is, I’m not sure that this particular protocol will be sensitive enough to detect autism in you. It’s really designed for eight year old boys.’

Sure enough, the report came a week later, noting that my reported experiences fit with a diagnosis of autism, but that she couldn’t observe autistic behaviours. She noted, in particular, that I made good eye contact on several occasions.

Here’s the thing with consulting an expert: they have to possess actual expertise, rather than a qualification and a willingness to charge a fee. I want to talk more about autism in adult women in my next letter, but one of the key issues in diagnosis is that we don’t tend to ‘look’ autistic by any externally observable criteria.

This is partly because autism presents differently in women in the first place, but it’s also because we often carefully learn our social skills based on years of negative feedback from those around us. Believe me: I spent my whole childhood being told off for not looking at people when they spoke to me; being asked, ‘Are you lying? You won’t meet my eye?’; being called arrogant and disinterested in other people. Eventually, you endure the discomfort of eye contact to save yourself the trouble of being told off all the time. And you come to believe that you’re a terrible person for not getting it right.

It’s funny, but that report has taken be right back to that time of my life, when other people knew best about what I thought and how I felt, and what I told them about myself was barely relevant. The difference is, I’m not willing to slink away, feeling humiliated, anymore. I have written the kind of hearty letter of complaint that’s making me dread opening my inbox to see the response. But there comes a point when you have to stamp your foot and say it’s not good enough. I’m not a child anymore. It’s time to finally acknowledge my expertise.

See you next week,
Katherine

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