And it’s certainly very true that its easy to jump to conclusions when we look at other people in our lives. Too often we form opinions based solely on appearance. And I too have been guilty of this a number of times myself, but mostly – I come from a place where I believe that every single person has a story and that no one’s story is any less important than anyone else’s. But sadly – in today’s society, it is a view that isn’t held by many.
Because, like so many other hidden quirks, nuances and physical attributes, you can’t always tell if someone has a disability just by looking at them, especially when it is a disability such as high functioning autism.
I have lost count of the number of times that people have shown surprise upon finding out that my boys are on the autism spectrum. And I never quite know how to react to their surprise. Does their surprise indicate that to them – my child doesn’t look sick enough to be diagnosed with anything? Did they expect my boys to look more, I don’t know, handicapped? Or do they simply think that I have just jumped on the latest fad bandwagon whereby getting your child a trendy diagnosis is akin to acquiring the latest apple accessory?
Do people have an idea in their heads of what autism should look like? And do my boys fail to meet their expectations accurately? Were they expecting them to look more disabled? Would a wheelchair help to sell it?
I really don’t know the answer to any of that. But I have to say that every time that I find myself in a situation like this, I am torn. A part of me feels that I somehow, on some warped level, need to defend their diagnoses and PROVE that they really do meet the diagnostic criteria despite the fact that they “look” completely “normal” at that given moment. I feel like I am under the spotlight as a mother and I want to blurt out all the challenging behaviours in an attempt to provide evidence that my child isn’t always this charming, well-behaved and loveable. Because isn’t that what some people associate autism with? Misbehaving, out-of-control children who have no future? Why do I feel the need to feed that incorrect assumption? Why don’t I focus on the “good” parts of autism? Because I want to be believed. That’s why.
I read that back to myself just now and I am disgusted. Not because I feel bad for painting a true picture of how our lives sometimes are, but because I feel like I need to justify the good and very normal behaviour that my kids are displaying in order to prove that they truly do have a diagnosis of autism spectrum disorder.
Because any parent of a high functioning child on the spectrum will attest that the child you often see in public is often the complete opposite to what they live with. They also know how hard it is when your child appears “normal”. Because they want to celebrate their child’s success in “fitting in” but know that there will be a huge price to pay for it later. And it’s a price that no one else will have to experience.
But here’s where I need to provide one very big and important disclaimer: When we tell you the bad stuff, the challenging stuff and the stuff that puts an awkward feeling in the air – we are not trying to extract sympathy for ourselves or even for our children.
What we are saying is that society needs to sit up and pay attention because these regular looking but struggling children will one day grow into adults. And currently, there are adults in the autism community who are overlooked and ignored because society has this ill-conceived misconception that high-functioning autism is no big deal. That because these people look like everybody else that they are just attention grabbing complainers using a diagnosis to explain away their weirdness or lack of social awareness.
Lately – I admit that I have lost the will to keep advocating for autism. Because it’s exhausting and I don’t have the time to explain it in depth to people who really aren’t that interested in learning about it anyway.
Although the passionate side of me really wants to spread awareness far and wide, the sensible part of me says that there is already enough awareness out there. But what there isn’t enough of is; compassion, understanding and a willingness to learn how to stop judging books by their covers.
Autism is no longer a word that is barely heard of. Almost everyone in the western world have heard the word. But how many of those people have actually taken the time to find out what autism actually is? Or how autism presents, or even how incredibly huge the spectrum is?
The book covers of autistic people may be bright, fancy and attractive to look at , or they may be plain, simplistic and understated. But until people take the time to read these books, understand these books and really read between the lines of what their messages are: They will never be appreciated for how wonderful and valuable they really are.
Once you take the time to read them, you will discover that each one is unique, fascinating, sometimes horrifying and tear inducing but also exciting, thrilling and suspenseful.
And aren’t they the ingredients of all the best sellers out there?
Never judge a book by its cover.
Never, never ever.