6 Things I Wish People Would Stop Saying About Autism
Words are like condiments; you have to choose the right ones to go with the right foods. You have to consider what the people you are cooking for can digest. Not all words are like salt and pepper that you can use for just any dish. Not everyone can handle hot chili, even though you may like the taste of it – and words you may have no problem saying or hearing are not OK for some of the people you talk to.
Being black, female and disabled, I belong to three areas of society that suffer regular prejudice and bigotry – I know this better than most. I hate the n-word, I dislike the word “bitch” when used contemptuously by a man to a woman (but not when referring to a dog) and I have no time whatsoever for the r-word. Yet the first two of those abusive labels are for some reason more taboo than terms used to insult those with disabilities, because people tend to think they can say anything they like to people with disabilities as they don’t know how to communicate “normally.” In actual fact, most of us can hear what is being said to us, and it does hurt our feelings and demean us as members of society.
I am autistic, but I am not autism. I am a person first and foremost. I do not want my label to go before me, as it will give rise to stereotypes and generalizations and give the impression that all I am is a statistic. However, the term “aspie” is commonly used and endorsed by people with Asperger’s syndrome (of whom I am one). Asperger’s determines the way we think, act and experience the world and our surroundings. It’s part of who we are. But again, I don’t want people to think one example of Asperger’s is a representation of all Asperger’s.
For the benefit of neurotypical (non-autistic) people who know little or nothing about our condition, if you can imagine waking up in a foreign country whose language and customs you don’t understand, you would be able to imagine being autistic. We are not all that fluent in the language you speak; we may not be able to understand figures of speech or metaphors. There are things that come naturally to you that don’t to us. Our brains do things differently. But we are different, not inferior.
So with a view to fostering greater understanding of autism, autistic people and their characteristics, here are some phrases I would prefer neurotypical people not to say.
1. “You don’t look autistic.”
You can’t tell someone is autistic just by their facial and physical features. It is a hidden disability. Not all disabled people need wheelchairs or walking aids; I assume that’s where the idea of “not looking autistic” comes from.
2. “You could be ‘normal’ if you tried.”
“Normality” is not something you can just conjure with a magic wand. It may take an autistic person years to fully adapt to social norms and conventions. Autistic behavior tends to be fixed behavior. We can be stubborn and immovable. By suggesting I could be “normal” tomorrow or the day after, you are trying to sell me something I can’t afford. You’re raising the bar too high.
3. “My son/daughter/nephew/niece is autistic too, but they’re nothing like you.”
Every autistic person is different. It’s called the autism spectrum because its symptoms are varied, just as every person’s genetic make-up is varied. So I may have autism like your son, but the characteristics of my autism are wildly different from his.
4. “How hard is it for you to say hello?”
Very hard for some of us, because autism affects communication. I am very selective about who I talk to, what I say and when I say it. All of us are taught at school not to talk to strangers, but sometimes I struggle to even initiate a conversation with somebody I know, for fear of what I say being misunderstood or not understood at all.
5. “Calm down” or “behave yourself” (when having a meltdown).
A meltdown may look to people on the outside like a temper tantrum, or just “immature” behavior I should have outgrown by now. Actually, it’s the result of information overload or when things just become too much to handle. Think of it like a volcano. It takes a long time for the eruption to die down and for equilibrium to be restored. You can’t just switch it off. It’s beyond our control. A meltdown is also not a criminal offense or a “breach of the peace.” So don’t call the police about it, even though you may want to.
6. “So you’re autistic? What a pity.”
You don’t have to “pity” us for our autism. We don’t “suffer” from it, we just have it. What we really suffer from is ignorance from strangers and indifference from governments. Their failure to adequately recognize our needs means not enough of us have access to a decent support network of professional carers, leaving many of us having to depend on our parents. When autistic children become adults, they will still be autistic but their responsibilities in life will change. They will be thrown into new, unfamiliar situations. What will happen when they reach middle age and they no longer have their parents? They may be in limbo, with nobody to help them navigate their adult lives.
We need more awareness, more understanding, more compassion and more care in your choice of words. What we strive for is equality, not necessarily “normality.” Autism cannot be cured, but prejudice can.
We want to hear your story. Become a Mighty contributor here.
Getty image by Diego Cervo.