It’s Autism Awareness month, and I have to admit I’m a bit conflicted about the whole thing. Don’t get me wrong, I think families affected by Autism Spectrum Disorder (ASD) need all the help they can get. But I wonder if the right messages are getting out.
There are awareness months for Breast Cancer and Heart Disease and many other conditions and problems, and it seems that their focus is generally on fundraising for medical research. Research into Autism is a booming field, with more papers being published every day, but it doesn’t appear that most autism month events are seeking funds for medical research. The slogan of the month is not “Cure Autism Now”.
Sometimes awareness months are working toward prevention, encouraging people to take less risks with their health. But, since we still really don’t know how to prevent Autism, that’s not what this month is about, either.
So, what is this month actually trying to bring into being? Awareness. Actual mindful awareness. The kind of awareness that changes people’s snap judgements about children and about parents. The kind of awareness that breaks down the fortresses of Ableism.
— When you are really aware of autism, you don’t stare at a child “throwing a tantrum” in a store. You realize that you may be witnessing a “meltdown” caused by sensory overload. You suspend your judgement about parenting skills, and you keep your mouth shut, unless it is to offer a smile and some encouragement. And if you’re a store employee, you might even offer a hand (by turning down the music, or helping find what is needed, or maybe by opening a new cash desk to get the family on their way as soon as possible).
— When you are really aware of autism, you invite affected children to parties, and you chat with parents to see if there is anything you can do to make it go smoothly. Many children with autism will go for years without a party or even a play date.
— When you are really aware of autism, you offer to babysit for your friends and community members. You take out your planner and pencil and you say, “When can I look after your sweet child so you can have a little break?” And when the parent begins to tear up, you pretend not to notice, and you act as if there is nothing miraculous going on.
— When you are aware of autism, you don’t insist that children look you in the eye, or sit still, or stop talking about their favourite topic after 3 sentences. You try to enter into the world of the child, and to take joy in their enthusiasms. You learn from their specialist knowledge, you rejoice in their frankness and respect their gravity.
Last year, an incident happened at an autism awareness event that illustrates how this can all go wrong. A child with ASD did something mildly strange after the event (he took hold of a string another child had tied to her wrist) and the girl’s parents reacted as if he had committed an assault. This happened just after an event that should have communicated to those parents that patience and asking questions and being unafraid are important responses to meeting a person with ASD. Instead, all the event taught was that autism exists, and that money is needed. Let’s try to do better with this. We have a whole month to get out the message of how to respond to people with autism. And maybe, if we can get the right message out, it might change the way we respond to everyone, bringing out more understanding and support, and less judgement.