April is Autism Awareness Month. And I have been dreading it. Now that I am a “writer”…Do bloggers count as writers? I don’t even know. Not sure when you’re allowed to claim the title, but I write stuff… Anyway, now that I write stuff I have been feeling a certain pressure to write about Autism this month. I mean, what kind of an Autism parent would I be if I didn’t, right?
But I’m just so tired.
And I am already so SO aware.
I am already aware of Autism. Autism is my whole life. I schedule my days around Autism. Where I go is dictated by Autism. My relationships have been decided for me because of Autism. I wake up each day holding my breath, waiting for what Autism has on the agenda for me today.
The COVID-19 pandemic has only intensified this. For the shutdown and the months of restrictions and isolation that followed, my husband and I were “it.” And since he was an essential worker, it was mostly me that was “it.” No more teachers and aides, no more speech pathologist, no more occupational therapist, no more consultant, no more outside support of any kind… and hardest of all, no more respite.
I am exhausted from trying so hard. And I’m not even the one with the diagnosis! My son is exhausted too. Probably much more than I am. I see it on his face every day. We are both very aware of Autism, and the work it takes to live in a world that isn’t built for people with Autism.
What changed my mind about writing this post was a conversation I had just yesterday with someone who I thought had a decent amount of Autism Awareness.
And it was cringy.
They weren’t unkind. They weren’t dead-wrong. They were just… eeeehhhh… operating under some misconceptions. The kind of misconceptions you have when your only Autism Awareness comes from a TV show.
So I decided to try.
Because I want my friends to know.
And because I know that they probably aren’t going to hear it unless I’m the one who tells them.
Sure, their eyes might linger on a meme for a second longer because they know me and my son, but will they actually click through and read the article attached to it? Probably not. It needs to come from a friend to really have an impact. And since the majority of my readers at this stage are my friends and family (Hi Dad!), let’s do this. Let’s have a personal conversation this month about Autism.
I thought I would take a couple weeks to answer the most common questions I get asked about Autism.
Here is #1. THE most common question I get asked when someone hears that my son is Autistic is:
“Have you seen The Good Doctor?”
They ask it with excitement, hoping for a fun conversation, but I always have to disappoint.
I’m not against these types of shows. I’m glad they exist. And I’m really happy for anyone who sees themselves represented by them, especially if it makes them feel seen, heard, and understood. That’s what matters.
I have enjoyed episodes of shows that I am watching already that do an episode with an Autistic character. (Such as this episode of Criminal Minds, and this episode of Murdoch Mysteries.) But I don’t seek them out. I can’t.
Autism is not entertainment for me. It’s not cute or novel. It’s hard work.
Autism is not entertainment for me. It’s my every moment of existence.
I’m tired, Guys. When I get a free hour to myself, I don’t want to think about Autism. I hope you can understand. I hope you can forgive me if you think that makes me a bad advocate, or uncaring in some way.
Another reason I struggle to watch shows about Autism is because they are very one-sided. Remember, it’s called “Autism Spectrum Disorder,” and yet only one side of the spectrum ever gets mentioned.
The fun one.
The inspiring one.
The one where someone is overcoming their Autism and passes for “normal.”
The one where the diagnoses isn’t just “Autism.” It’s Autism AND Savant Syndrome, which is a second diagnosis that not every Autistic person has.
It sucks that the media is all “Whoo, good for us, we’re representing Autism,” but in reality, they are only representing a small portion of the Autistic experience. The one that looks most like them. The one that makes them most comfortable.
You don’t ever see my son’s section of the Autism Spectrum represented.
The one filled with tears.
The one filled with fears.
The one filled with sensory issues so severe it prevented him from having a life like other children his age.
The one which will, in all likelihood, require him to be in care for the rest of his life.
The one where he wakes up every single day with a smile, and a bad-ass determination to carry on, to fight through, to make himself understood when it is so difficult, and find his place in this world.
My son has a superpower. Not a savant one that will get made into a movie someday. His power is in his unshakable determination.
My son never gives up.
My son gets back up every single time life knocks him down.
My son shows us his personality every day, even though he has to break through a labyrinth of communication barriers to do so.
My son is sensitive to others, and can always be found sitting next to the person who is struggling most in the room, sharing his teddy bear with them.
Maybe when the media makes a show about that, I will watch it.
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