Most people don’t know I have autism. More people know my children have autism and I’ve lost count of the number of times I’ve heard things like “Oh, but he’s very high-functioning isn’t he!”. They sometimes go on to list all the famous people who were “autistic” – Einstein, Mozart, Warhol. There’s currently a general movement to portray disabilities more positively as “different abilities”. There was the “Not Special Needs” campaign focusing on people with Down Syndrome, the premise being that everybody has the same basic human needs. Following his recent documentary, Chris Packham posted on his blog: “For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do.”
I certainly agree that for any person (with or without a “disability”), the way forward is to focus on and work with their strengths. I definitely don’t want anyone to be written off because of a label. At the same time there is a risk that in this celebration of the positive, we lose sight of the challenges that people with autism and their families cope with day in, day out, the majority of which go completely unnoticed.
The thing about people with Asperger syndrome/high-functioning autism is that we tend to have an unbalanced skill profile. Brilliant at maths, but can’t tell when he needs the toilet. Can concentrate for hours on a topic that interests her, but can’t focus in class. Inspirational public speaker, but feels out of his depth at a pub social. Fantastic organisational skills at work, but can’t manage to keep the house clean and tidy. The high-functioning part is what the world sees. The less-well functioning part tends to hide behind closed doors.
The other thing is that some days we can cope better with our autistic traits than others. If I am generally under stress, then I just don’t have the energy to manage conversation, I don’t have the strength to enter a noisy supermarket, I can’t make simple decisions, such as what to have for lunch. Because every day these little things that other people might take for granted need a lot of focus and mental energy. As an adult, you don’t get a diagnosis of autism unless your autistic traits “limit and impair everyday functioning”. I’d spent my whole life castigating myself for making such heavy work of things that other people seemed to find a breeze. It was a sweet relief when I realised that there was a reason for it.
I’ve spent a lifetime trying to blend in. If I’m managing my autism well enough to be out in public, then you won’t know it’s even there. If I’m not managing it well, you won’t see me. I’ve learned how to handle this with the children too. We rarely have any meltdowns in public, because I don’t take them to places which are low enjoyment and high stress (e.g. supermarkets, hairdressers). Before we go anywhere that’s high enjoyment, high stress (e.g. swimming pool, park), I quickly asses whether or not they will cope with it in their current emotional state. Sometimes you have to forge ahead with plans, but we always make sure there’s an escape route, a chance to bail out. Sometimes that entails swiftly removing the child from the situation before they’re beyond their ability to cope. Sometimes it will involve shoving a tablet in front of them with their favourite game playing, so they can zone out. My husband and I rarely go anywhere with the children on our own, because often the escape route needs two of us in order to keep everyone safe.
This is why I believe that we DO have special needs. When we go to theme parks, we wouldn’t manage the queues without a fast-track pass, because the queues cause too much uncertainty and anxiety. In school we need teachers to be patient if we take a while to process things, we need movement breaks, we need someone to help us focus sometimes. At work we need a desk that’s not right next to the door, in an office without flickering, buzzing lights, we need adequate notice about meetings, we need to be given the freedom to do things the way we know will work for us, rather than trying to squeeze ourselves into someone else’s mould. We need to be allowed to communicate by email and text message rather than by phone or face to face. We need friends who will understand that cancelling at the last minute is a major incident, that we’d rather chat one to one rather than meet as a group, that sometimes we might just not want to talk at all.
Not every autistic person will need all of these things, and there are many other different needs I could mention. We’re all individuals, but the fact that we have an autism diagnosis means that our needs significantly impact our lives. Yes it’s “got to be about what we can do”, but for many of us, this will only be achievable when allowances are made for that which we can’t do.