Niamh McCann – TEDx Talk TRANSCRIPT
What do you think when you hear this phrase: “He bent over backwards”? Or this: “She was on the ball”?
What you probably didn’t imagine was this. Or maybe this. The English language is full of colorful expressions, metaphors, slang, and we use these in the conversations that we have every day.
For 99% of the population, it’s a comfortable means of communication. For the remaining 1%, however, all that colorfulness is not only uncomfortable, but extremely confusing.
And not only because people bend over backwards or are on the ball, but because a simple wink can have different meanings in different contexts.
And sometimes, a friend will say something to another friend which sounds like an insult, but it makes them laugh instead of cry. Who are these people who see funny pictures of flexible men or who can’t understand sarcasm?
These people have a condition called Asperger’s syndrome, which is a type of high-functioning autism.
Now usually, when I say “autism” and I ask people what they understand by it, they tell me it looks something like this, your quirky genius type, stimming, bouncing, flapping, rocking, or my personal favorite: restricted interests.
Yes, it is true that there are people with Asperger’s who display these traits. It is also true that these are only stereotypes and a small part of the entire picture.
If Asperger’s were as easy to spot as this, then there would be no problem at all in diagnosing it. Unfortunately, Asperger’s, like life, is far more complicated. And if you’re a girl with Asperger’s, things get even more tricky because all the diagnostic tools that professionals use were designed to spot Asperger’s in boys.
Now, this gender bias leaves thousands of Asperger girls undiagnosed, unsupported, sometimes even after they’ve taken the test. My younger brother was diagnosed as being on the spectrum when he was three and a half.
His autism was obvious, or stereotypical. He was late to talk, he bounced and flapped his hands, and he wouldn’t make eye contact. My parents took him to get an assessment done. Within two months, he was diagnosed, and the proper supports were put in place to help him.
Fast-forward eight years, and he’s doing just great. And then, there was me. I didn’t bounce, I didn’t flap. I was a shy but diligent student, I got good grades and I didn’t cause trouble.
But what I did do was hide under the table and cover my ears at lunchtime because the noise of my chatting peers was too much for me to cope with. I was quiet, I let others make up the rules of the games we played, and I shared my sparkly pens when no one else would.
And it took 14 years for anyone to notice that I was struggling, desperately. For many high-functioning girls, it takes even longer. Why is this? Shouldn’t our confusion around other people be obvious to our teachers, our friends, let alone our parents?
And what I find is that there is a very simple, if unfortunate, reason for this. It’s because of something we do to cope. We do it subconsciously, but it results in us camouflaging our autistic traits, and it is called “masking”.
Asperger girls are usually bright and sensitive, and when we’re younger, we use these qualities to achieve a kind of superficial social competence. Like detectives, we watch, and we listen, and we try to make sense of the things people do and why they do them. It’s a hard job. It’s exhausting.
We work both day and night shifts. The clues often lead us wrong. But we don’t have any other choice, because it’s our means of coping in a world which is so socially confusing to us.
When I was younger, I would mimic my favorite cartoon characters: their way of walking, the words they used and how they spoke to one another. I absorbed this information and then applied it to my social interactions, almost like copying and pasting.
But I quickly learned that life is not a cartoon, people are not characters who behave predictably, and imitation can only take an Asperger girl so far.
By the time they reach adolescence, trust me, they are mentally exhausted and emotionally wrecked. Social relationships become so much more complicated, and for an Asperger girl, every conversation becomes like a math problem.
And I remind you here that we are not all quirky genius types. I managed to mask my Asperger’s for 14 years, and then, I crashed. The loving people in my life rushed in to help.
And one day, I found myself sitting in a room with two occupational psychologists, a bag of feathers, thumbtacks and a book about flying frogs. This apparently was the ADOS test, the standardized test used to identify autism, the same test that my brother took seven years previously.
They set me some simple tasks, and they asked me questions about my life, my family, my interests. I responded to these in the only way that I knew how: by copying and pasting the correct answer. So I smiled, I shook hands, I gave eye contact, as I knew I was supposed to.
I’m not sure what the story with the flying frogs was meant to tell anyone about me, but apparently it told them that I wasn’t on the autistic spectrum. In fact, I scored a zero. I failed.
I “really, really, really” didn’t have autism. But it wasn’t me who had failed the test. It was the test that had failed me. And there are women in their thirties, forties, fifties, and even older, who are only just getting diagnosed now, usually after identifying their difficulties themselves by taking online quizzes.
And this simply isn’t good enough. These women have spent decades of their lives not understanding a crucial part of themselves. They can end up in the mental health system, being misdiagnosed with mental health disorders, medicated and treated for things they don’t have, and then suffering the consequences and the complications of these medications.
In a recent survey, 23% of girls with anorexia were subsequently discovered to have autism. Twenty-three percent. A further 40% have coexisting anxiety disorders. Countless more are being treated for depression.
And I wonder: how many of these girls might have been spared these mental health difficulties had their underlying Asperger’s been identified sooner? I got the correct diagnosis in the end; not through ADOS, but in spite of it. I am one of the lucky ones, and I don’t want any more girls to slip through the net like I did.
We need to become better at identifying difficulties in girls, even if they’re subtle. We need an accurate and broader tool to diagnose autism in all its many forms. Because autism is not black and white; it is a spectrum of color. And we need to open our eyes to see all of it.