A close friend of mine recently found out that her son is on the Autism Spectrum. She’s struggling with navigating talking about this in online spaces, because his privacy means a lot to her. And while she knows that there is no shame in the diagnosis, she’s only too aware that not everyone else is there yet. So she has asked me to post this anonymously in my blog, on World Autism Awareness Day. Please read, share, and be kind.
“What did you do today?”
It was the question I asked my son every night when he returned home from daycare, or “school” as we called it. Each night, without fail, he would repeat the same answer verbatim, “I played with cars with Josh”. Or there would be silence. I’m not sure what was worse.
“What did you do today?” we would ask over and over, until finally we just stopped because the answer frustrated us so much.
It was one of the things that made me know something was wrong. He would repeat what I referred to as a “bank of phrases”, each one used to get him through the routines of the day. And he relied on those daily routines, so much so that disaster would strike if we deviated from one task for even a minute.
“It’s time for my bath, you need to go home now,” he told his little cousins at a family reunion with my brothers two summers back. How adorable, everyone thought.
Then there was the intense focus on a singular interest. Months spent talking about nothing else except for his favourite movie. Nothing. Else. On the beach in Florida where the sun was shining and the waves crashing around us, “does Woody wear a cowboy hat? Yes. Woody wears a cowboy hat.”
“You’d think that he spent 24 hours a day watching this movie,” I told my mother. “He speaks of nothing else.”
And while there were hugs and cuddles, there were never any “I love yous”. I can count on one finger the number of times my son has told me he loves me. He does though, I know this. And I love him, which is why I fought to find out what was wrong with my boy.
It’s Autism. That’s what’s “wrong”. Autism Spectrum Disorder (ASD). We’ve been processing this information for the past three months, and maybe I’ll get to a better place but right now it still really sucks. To be brutally honest, I never thought I would have to give more than a fleeting thought to International Autism Awareness Day. This was my sweet boy. My first born who had such a vast vocabulary at 18 months. My baby who never wanted to leave my side, the gift life gave me that made me feel such pure happiness. I never thought we would meet autism. This caped monster that came in the night to steal all our hopes and dreams that we had for our son.
Autism means speech therapy, behavioural therapy, delaying his entrance into school so he can take part in intensive early intervention and managing the well-meaning but sometimes super awkward encounters with friends and family when telling them the news.
Writing is therapy for me, which is why on International Autism Awareness Day I asked my good friend to let me take up some space on her blog. You might ask what I know about autism, considering my child was only diagnosed three months ago, but you underestimate me and the power of the Internet. Here are some things I’ve learned on our journey thus far, and some things you might benefit from learning on this day:
Shit is confusing
Autism is a health condition in which no one has any answers and yet everyone has all the answers. So far I’ve learned that autism is genetic. That it’s not genetic, it’s environmental. That it’s a combination of genetics and environmental. Vaccines cause autism, vaccines in no way cause autism so shut down your crazy. Tylenol while pregnant causes autism. Tylenol for babies causes autism. Being induced causes autism. C-Sections cause autism. Fucking Bounce sheets cause autism. There is no cure for autism. But Natural Doctors might have things that can rid your child of autistic tendencies. Gluten free. B12 shots in the ass. Stool samples. And if you don’t do these things you are basically just giving your kid more Bounce sheets to roll around in.
Seriously. Shit is confusing. Luckily, I have people sending me all the articles on autism that exist on the Internet so that I can spend the majority of my time banging my face against my keyboard.
The Spectrum is Vast
One important thing I’ve learned is that there is no way you can generalize those who have ASD. Every kid on the spectrum is different. There are some commonalities to be sure, but the symptoms and behaviours are across the board. For one thing, don’t ask me if my son has a “special talent” cause you heard that “kids with autism all have a thing they do well”. Take your Rain Man stigma and check it.
Pity is the worst
We have some incredible friends who have responded so well to the news about our son having ASD. We’ve also had some terribly awful reactions that kept me up all hours of the night. Our son doesn’t need your pity (besides for having me as a mother). What he needs is for you to give him a chance at a playdate even though he might not be the most outgoing kid in the daycare class. He needs for you to not exclude him from birthday parties, because that really hurts. Please remember that our kids learn from us, so just because little Johnny doesn’t want to invite the weird, quiet kid from class to his party doesn’t mean that you should accept that. You know better, and you should teach your kid to know better as well. Better than any therapy in the world is the social interaction kids with ASD get from playing with their peers. Don’t just talk a good game about diversity and acceptance. Practice it even once a month. Trust me, it’s life changing for these kids.
Support is key
I don’t know what we would have done without our family and friends the past few months. Taking care of our younger child while we shuttled our son from one appointment to the next. Listening to me cry for hours on the phone. Coming over with a bottle of wine and talking about nonsense to take my mind off of the new path we were facing. Inviting our family into your home for afternoon get togethers or suppers to make it clear that our son would never be treated any differently. Most importantly, thank you for saying something. What has hurt the most is the people we’ve told who have chosen to say nothing at all. Who feel it is best to pretend that nothing has changed in our lives. It has, things have really changed, and calling to see how we’re doing would be a really cool thing to do.
So those are a few of the things I’ve learned that I felt important to share. Maybe next year I’ll have more insightful things to share about where we are with autism. Right now though, things are finally starting to feel ok. I can see my son again; I don’t look at him and see autism. I see his strengths, his character, and his drive. Those hopes and dreams we had for him are still there, but they are less vain. I want him to be happy. I want him to love his life and seek answers independently in order to satisfy his curiosity. I don’t ever want him to change.
“What did I do today?” my son asked me at dinner last night after weeks of us not asking him the question. My husband and I turned to him, jaws dropped, before regaining our composure and engaging in the conversation. “What did you do today, buddy?” we asked. “I played smurfs with my friend and then I did craft,” he replied with a smile before following up with, “Do you like popcorn?”
It’s not one of those things you can put up on Facebook with a cute caption like, “Zoe is riding her bike!” or “Colin played his first hockey game!” but my son asking me if I liked popcorn and looking like he honestly gave a shit might be one of the best moments of my life.