At the moment I’m very open about my disability. I’ve posted several autism awareness articles on the internet, most of which contain highly personal, autobiographical material about my struggles as an Aspie trying to navigate a neurotypical world. I also take part in regular training sessions for the NHS, Social Services and other professionals who work with autistic children. During this training I encourage the audience to ask as many questions about autism as possible, and I’m more than happy to answer them. However, when I’m not at work and a complete stranger asks why I flap my hands or I’m scared of loud noises, I generally respond with “fuck off”.
I’m aware of how rude it is to swear at someone who’s just curious. But in my opinion it’s just as rude to ask a complete stranger why they look or behave a certain way. The most common question I get is “why are you wearing sunglasses?” Indeed, at one point I was asked this question several times a day by people I barely knew. One man even stopped his car just to ask me. I also had to listen to lots of jokes about me being a vampire/film star/secret agent/blind. I know people think they’re being funny when they say that kind of thing. But it gets old very quickly.
For the past year I’ve worn sunglasses every time I leave the house in order to minimise the risk of sensory overload. I am very sensitive to light, particularly sunlight and the harsh electric light you see in places like supermarkets. Without sunglasses, the light levels that others perceive as normal create a sharp pain behind my eyes, causing me to squint and become highly anxious. Wearing sunglasses reduces this effect, making leaving the house pleasant and relaxing instead of something to be afraid of. While I’ve got shades on it’s also impossible for someone to give me direct eye contact. (Eye contact is something people with autism can find very distressing, as it triggers our natural fight or flight response, causing the body to become pumped full of adrenalin and go into a high state of anxiety).
Most people seem to view my sunglasses as a fashion choice, like a necklace or a hat. But they’re not. They help me deal with a medical condition, and leaving the house without them would be like someone with a broken leg leaving the house without crutches. Even if I was wearing shades just to look cool, it still wouldn’t be acceptable for people to ask questions about them. Nobody walks up to complete strangers and says “why do you have a moustache?” or “why are you so fat?”
I get many other questions relating to my autism from strangers. The second most common is “Why do you sound so posh if you’re from Bradford?” In fact, while I was at school I was often teased and made fun of for having such a la-de-dah accent. Many people on the autism spectrum come across as posh and formal, particularly if they’re in a social situation with someone unfamiliar.
Although most autistic people learn to talk, speech is not a natural form of communication for us. When you learn a foreign language (ie: French or Spanish) you don’t start with the slang and the rough, working class accents of local farmers. You start by learning formal, often outdated words and phrases like “bonjour monsieur , le temps est beau aujourd’hui”, which roughly translates to “hello sir, the weather is nice today”. Autistic people learn English (or whatever their mother tongue may be) in the same way you might learn a foreign language. We can become very fluent in it. But we will always sound a bit stiff and formal, because it’s not how any of us would chose to communicate.
Other questions I’m asked relating to my autism include “Why do you flap your hands?” “Why don’t you wanna hang out with us all the time?” “Why do you drop things?” “Why are you so weird?” or the classic “How can you be disabled when you’re not even in a wheel chair?” I flap my hands (often when I’m highly distressed) because it’s a self-soothing mechanism that helps me get rid of excess energy. I don’t want to hang out with you every second of every day because although I love socialising, I also find it exhausting and I need to look after my health. I drop things because I have poor muscular control. I am weird because I am me. As for the last question… you don’t have to be a wheelchair user to be disabled. Disability is not always related to mobility, and the majority of health conditions are completely invisible.
Do I give all this information when asked why I am different in an ordinary social situation? Of course not. Mostly of the time I tell people to fuck off. I’m more than happy to answer questions about autism if they come through my blog or through my training sessions. But that’s because autism training is my job. I can’t work twenty four hours a day seven days a week. If you came across a cleaner in the street, you wouldn’t expect them to clean your house for no wages at the drop of a hat. So why should I answer questions about my autism for no wages at the drop of a hat?
When people first started asking about my sunglasses I was much more energetic and optimistic. I didn’t give them my life story, but I did explain a little about light sensitivity and sensory overload. However, as the questions and comments mounted up, I started feeling less and less patient. It was different when they came from a friend or family member. But complete strangers asking about my appearance several times a day… I started to feel like part of a voyeuristic freak show, or an animal trapped in a glass cage at the zoo. I could feel people’s eyes on me all the time, and every time a person came up to me I’d think Oh No! Here we go again!
There are plenty of people out there who think I should be able to grin and bear it without a word of complaint. After all, I’ve chosen to wear sunglasses and look different, rather than be in pain and look normal. Presumably these are the same people that think it was my fault for being bullied when I went through my Goth phase, or sworn at when I was seen kissing my (now ex) girlfriend in public. This kind of attitude is incredibly damaging, and all part of our discriminatory, victim blaming culture, where if a woman is raped it’s her fault for being beautiful.
Anyway… I’ve started to stray into hard core feminist territory, so let’s get back to the original point of this article. It is perfectly acceptable for you to ask me disability related questions during training sessions, or to leave your questions in the comments section on this blog. I’d like to encourage you to do so! However, if you are just walking down the street and you see a person who looks and behaves a little different from the norm (regardless of whether they have an obvious disability) it’s not acceptable to ask them about it. When these questions come from random strangers they become personal, invasive and alienating. Nobody deserves to be made to feel like a freak every time they leave the house.