Yesterday, a film crew set up around me; I was centre stage. When I’d finished my piece the cameraman, out of respect for what I had just said mimed a ‘mic drop’ and all concerned were impressed by my knowledge and ability to articulate it. Yay me!
I am capable, I am able. The song Close by 90s band Soul Asylum plays in my mind as I type, describing how someone almost made it, almost shed their skin and became a different thing.
So when I got home yesterday did I feel triumphant?
No I did not.
Well, the filming went brilliantly, but I got lost five times driving to the venue (hence why I usually travel on trains). The first instance of getting lost was at the end of my very own street. I find navigating to places exceptionally difficult.
When I learned to drive my father would get frustrated at my getting lost, asking “Don’t you look out of the window when other people are driving you, how can you not know the way to X you’ve been there hundreds of times before?”
I always plan to find my way. I had two set navs working alongside me as I got lost on Saturday.
Consequently, I felt like a fraud. Yes, the part in front of camera went well but getting lost undermined any feelings of success I might have experienced.
Driving home, I worried about the following day. As a child, I stood bewildered in playgrounds—those great grey acres of asphalt smudged with grazed knees, scuffed with footballs kicked, marauded over by other children. I watched from the edges, trying to understand the patterns I was seeing. As I got older, I learned to hide behind trees or locked in toilet cubicles. I was never able to figure out their goings on.
Today, I will stand in a playground, and around me a social dance will play out that I still do not understand. And although the adults completing this dance are unlikely to call me names, I will still be hearing the chants of derision sent my way when I was a child bouncing off those playground walls. I will collect my son and run away.
I never mastered finding my way no matter how much I tried.
I never found an understanding of that social playground muddle, not in childhood, not in adulthood.
There are many such examples in my life of situations where I consistently fail to do things other people find easy or fail to understand things other people view as self-evident.
Why do I feel the ‘almost’ of that song? Why do I feel that I’ve failed at this? I know that both of these things are an expression of my autism, as was the knowledge and articulation of that which so impressed the film makers.
[Incidentally, I did not always recognise the first example as associated with autism. I was surprised to read that my knack for getting lost is highlighted as a trait on my diagnostic report. I had thought that I understood autism, and I didn’t know that was a part of it.]
I feel this way because the narrative that surrounds neuro differences like my own is always one of incremental change. We are not supposed to be different; we are supposed to change. It is a form of prejudice, a form of subconscious bias. And I am not immune to it purely through being a victim of it. Indeed, the place it does me most harm is within myself. I, along with everyone else, subconsciously thinks the aim of my life should be to become ‘normal’. To be able to do the things others do, understand the situations they understand. With all the will and effort in the world, I will never achieve that.
Recognising my differences and not expecting or asking me to change, but instead providing for them, would be one of the kindest, most empowering pieces of advocacy that I could encounter. And understanding that I can be both able and disabled, and that one does not discredit the other, would be empowering.
Who am I urging to do these things? Well, it would be great if employers did, if educators and carers did, but really, first of all, I’m speaking to myself. For how can I ask others to do something which I’ve not managed to do for myself?
Joanna Grace is a Sensory Engagement & Inclusion Specialist and the Founder of The Sensory Projects.
Her book The Subtle Spectrum charts the post diagnosis landscape of adult identified autism.
Her son’s book My Mummy is Autistic, written when he was just 5 years old, explores the language processing differences some autistic people experience and throws a challenge out to the adult world, that if a child can understand neurodiversity what is stopping us grown-ups?