What is High Functioning Autism?

And why I find the term unhelpful

I just watched the film ‘Rain Man’ for the first time. Yes, I know it came out in 1988, but I was only 9 at the time.

Anyway, one thing that stuck with me, apart from the cruelty of Tom Cruise’s character toward his autistic brother, was when Raymond was called ‘high functioning’.

I know that a lot less was known about autism back then, and so many autistic people were left undiagnosed. Maybe now, the character wouldn’t be labelled as high functioning? But it still struck a nerve with me, because what is high functioning?

For now, my autism is self-realised, but assuming I get diagnosed, I’ll be called high functioning. Actually, a few people have already used the term about me, but I didn’t have the energy to question it. Others have said things like, “I mean severely autistic people, not people like you.” Perhaps it’s meant as a compliment, but I find it unhelpful.

I don’t feel like I’m high functioning. Yet, I can see why it’s easy to think that I am.

People who label me this way didn’t see me when I was in my late teens, living in Surrey and surviving on a diet of crisps, packaged sandwiches and chocolate bars in my room, because I couldn’t face going into the communal kitchen and cooking anything with so many people watching me. Or later, when I quit the job I was there for, because it was too overwhelming. I was miles from home and anyone I knew, and the job of looking after epileptic children who also had other disabilities felt like so much pressure without any training. It never occurred to me to stand up for myself and demand the training that they had promised me before I moved across the country.

Nobody saw how much it took from me when I drifted between warehouse and cleaning jobs, most of the time, not lasting longer than a few weeks. Even when I had a flat to pay rent on and bills that were due, I couldn’t stay in a job. How is that high functioning?

Even now, most people don’t see the preparation before or the recovery time after recording a podcast, traveling to visit family, attending a spoken word night or just generally going anywhere. I can see why it might appear like I’m high functioning, but this isn’t Big Brother. There are no cameras (thankfully) in my home. So, people who think of me as high functioning don’t see me if changing out of my pyjamas is too much, or if I take two minutes to say something that should take twenty seconds, because I’ve forgotten some of the words, or how long it takes to do something simple because I’ve let my brain tell me I’ll only fail anyway… The list goes on. These people wouldn’t realise that sometimes, I don’t even feel like a real adult, especially when I have to deal with difficult situations.

I often don’t know the right thing to do or say until days or months afterwards. By then, it’s too late. I can be really good at spotting bulls**t in some situations, but then in others, particularly when it’s my family, I take what they say at face value and only realise later how gullible I am and that I should have questioned what I was told. And asking for help is almost impossible for me in most situations, even if I knew what I needed. I could go on, but my point is, I can see why I might be thought of as high functioning, compared to someone who can’t communicate or take care of themselves at all. On the surface, I might come across as weird and/or quiet, but still like someone with the ability to ‘adult’.

Is it helpful to compare myself to someone who has it worse than me though? I don’t think it is. If we all did that, most people wouldn’t get the help or validation they need, because there is nearly always someone who has it worse.

Calling me (or any other autistic person) high functioning feels so dismissive of our struggles.

I can’t help wondering, if I’m so high functioning, why can’t I do relatively simple things, even when I know it’s necessary to survive?

There should be another way to describe us, because high functioning doesn’t show the extra work so many of us have to put in each day, on top of everything else, or the effect this has on so many autistic people. When I recently carried out some research for a project about autistic burnout, there wasn’t one autistic person I asked who hadn’t experienced it at least once.