When my son was around 3 years old, his nursery called us in to talk about his progress. The only words I remember from that meeting are ‘spiky profile’ (in other words, he was miles ahead in some areas and slipping behind in others, causing the lines on his achievement graphs to spike up and down over time.)
My husband and I would soon encounter some scarier words like ‘neurodisability’.
I came out of the meeting, eyes streaming, knowing that this thing was down to me. This mental health problem he had, which was not yet identified, was mine. I’d passed on to him. I knew this when he was around 10 months old. Now everyone else could see it too. And I cried all the way home, thinking I should never have had kids because he was destined to be as miserable as I was.
My son went onto a waiting list for assessment. We were told it would take a year or longer to get the appointment.
* * *
In my childhood and teens, I had been diagnosed with anxiety disorders over and over again. I knew that whatever this thing was, it wasn’t anxiety, but that was the only explanation I had been offered.
Counselling, drugs, CBT, came and went and did nothing to help. I just had to live with it because nobody could help me.
I never felt right. I couldn’t manage uni. I was bullied at work. I could ace any job interview without breaking a sweat, but I couldn’t cope with a trip to Sainsbury’s.
While we waited for my son’s appointment, there was one memory I kept coming back to. In 2009, I’d got an astronomically high mark in an online test for Asperger’s. So what, I thought at the time. Just another online personality test.
Last year, when I went back and searched for the test again, I realised it was the autism quotient, and I was still scoring well over 90%.
* * *
Often, if you talk about autism with someone who doesn’t have it, they’ll tell you it’s a normal personality trait.
“There’s a little bit of it in everyone”, they’ll say, incorrectly. “It’s a spectrum, so everyone in the world is on it.”
If you are autistic, your circuits are configured differently. The signals take a different route. Some get to their destination faster than expected. Some take a detour, or get stuck. For an autistic person that doesn’t know they are autistic, it is exhausting trying to hide this and pretend it isn’t happening. So for neurotypical people to claim that they are “a bit autistic” totally steamrollers over the real problems autistic people have every time they have to hide their own struggle. Neurotypical people find ‘normal’ things easy. I didn’t.
It was slowly dawning on me that I’d been misdiagnosed and had consequently spent all of my 39 years masking something completely different.
My son’s diagnosis of autism finally came after he started school. By that point, we knew, as a family, what the diagnosis was going to be. At the conclusion of his appointment, they told me, and I just smiled with relief that he wouldn’t have to struggle any longer.
Clearly, my son’s diagnosis is not my diagnosis. But it was responsible for getting me to label own autism and come to terms with it so I can be a better parent to him in the future.
* * *
I want to use #mentalhealthawarenessweek to make one important point: being autistic was horrendous until I realised. Now I feel more in control because I don’t pretend to be neurotypical.
Chris Packham said that he would never take a pill to cure his Asperger’s, and I completely get that. Some situations that are a bit tricky for a neurotypical person are impossible for me. But sometimes autism gave me superpowers. That’s a priceless gift.