It’s Not “Just Autism”

Ali Family Autism Truths #20 – April 20, 2016

I pretty much don’t have to even write today’s Ali Family Autism Truths #20 (dude! Made it two-thirds of the way through!) – because my friend Nakia pretty much said it all today:

I forgot yesterday’s autism fact because Zak went to bed on time in his own bed, so I was a little spooked. But here you go: most aspects of ‪#‎autism that neurotypical people focus on are the social aspects — the differing communication and play styles, or the way that autistic people perceive emotions in others. But autism can have symptoms that are truly uncomfortable or dangerous for autistic people. These can include food intolerances, seizures, or a lack of perception of danger.

But the aspects of autism that get the most attention from doctors, therapists and teachers are usually those that inconvenience neurotypical people. That is one of the many reasons why it’s essential to listen to autistic people about their lives, so we can develop treatments and therapies to help autistic people live the lives they find fulfilling. It is not the job of autistic people to suffer in silence to make our lives easier.

Let’s hit the pause button here and look at this statement again: It’s not the job of autistic people to suffer in silence to make our lives easier.

It took a while for me to get this in our family’s autism journey, I’m ashamed to say. Of course, D’s wellbeing and needs were always my first priority. But it took some much deeper digging (and time) to try and understand the functions of D’s behaviors and what he was trying to communicate through them.

There a reason for pretty much every behavior. We just don’t always understand it.

So out of all the things I’ve said and tried to convey, the one thing I do hope you’ll remember is that the answer to why does he do that? Or, what’s his deal? Is NOT: It’s autism.

The word “autism” isn’t this catch-all ubiquitous, end-game answer for everything an autistic person does/feels/thinks/behaves or doesn’t feel/think/behave. There is a reason. There is something he is trying to communicate. Or, there is something amiss with his health or biology. Or, there is something bothering him. Or he’s engaging in something that is harmful and needs a replacement behavior/activity.

It’s not “just autism.”

When Nakia says, “It’s essential to listen to autistic people about their lives,” she is speaking truths. Communication with D has been a huge struggle our entire life together thus far. But the more I took time to listen to him, to observe him, to try and ferret out why he was doing what he was doing, the more I discovered about his health, his medical issues, his likes and dislikes, his learning style and his abilities.

Nearly five years ago, D was in the throes of something God-awful, the likes of which I had never seen before. The self-injurious behavior was unrelenting, constant, awful and heartbreaking. And yes, many people told us, it’s autism.

But that’s not an acceptable answer to me. There has to be a reason, and was determined to find it.

Sometimes in the journey, the answers are unclear or unreachable. Sometimes, especially if the autistic individual has difficulty communicating, learning what will really help them live fulfilling lives, what will help them feel physically well is hard for us, as the family and support team, to do. Sometimes we can’t figure it out. Sometimes we fail miserably.

But it’s not the job of autistic people to suffer in silence to make our lives easier.

We need to listen.

It’s not “just autism.”

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