A friend on Twitter recently asked me my thoughts on functioning labels. I haven’t written about them explicitly, so I’ve put together this post to capture my thoughts in one place.
A popular view of autism is that’s there’s a sort of linear spectrum. With ‘low functioning’ folks at one end and ‘high functioning’ folks at the other. Someone may move around a bit day to day… but broadly stay at one end or the other.
It’s popular because it’s simple and ‘easy’. But it’s also tricky because it’s too simple.
It’s an over simplification… often harmfully so. Being called ‘low functioning’ can rapidly end in loss of autonomy. The labels tend to stick too.
Functioning labels have always been part of my life. They have been somewhat unavoidable and they colour every part of my interaction with the world.
I’ve never been easy to classify. My ability, capability and capacity changes often. I am extremely sensitive to environment, routine & structure. That’s before we even consider demands and living skills.
My experience of the autism spectrum isn’t linear at all. It’s much more complex and nuanced. I tend to confuse a lot of people who use functional labels because I just don’t fit.
The phrase low functioning pops up in reports right through my teenage years. Especially during my time in a specialist supported living provision. Equally I have many reports saying I am high functioning. One that even asserts that I ‘pass socially’.
I can write this short summary… but I don’t think it really makes the point very well. So here’s an example.
At the cafe I am non speaking. I used to always arrive with a support worker or friend, but eventually I started arriving alone. I always order the same thing using pointing & speech app on my phone. I always sit in the same seats. I sorta float and bounce around the place.
I kept leaving to many puddles on the seats so most of the time I just use different underwear. The nappy peaked out from under my T-shirt often enough the cafe staff had a specific sign to tell me to pull my shorts up!
The same Jamie occurs in most places. Especially if out alone or in a situation like a hospital. In the hospitals I was non speaking and my friends did a 24/7 rota to keep me safe and prevent me ending up in an ATU.
I don’t have a learning disability. But when I am tired or in those environments I do find it very hard to process information. It makes me intensely vulnerable.
However, there’s another side. Most of the time I am in the cafe I am working. Either in my senior research engineering role at the BBC, or working on a tool for detecting financial crime which a friend and I sell to banks.
My experience is that functional labels are overly simplistic and they can cause a huge amount of harm. It’s easy for them to become sticky. Being limited by low expectations, or set up to fail by expectations which are too high.
I’d describe myself as high support. We try to match my needs and environment. We’re really keen to adopt tools which work and we don’t mind where they come from.
It’s taken a long time to engineer but these days I am Jamie and I sorta float through life being myself. How externally autistic i appear isn’t a factor in anything we do.
I am thriving because we changed our lens. It took me 25 years to escape functional labels. It was needed before I could achieved the autonomy I now enjoy.