Months ago, my toddler’s doctor suggested an Autism evaluation.
It was expected. At 18 months old, he was diagnosed with Sensory Processing Disorder on top of his existing developmental delays, and has had therapy from an early age to help them clear these and other hurdles.
In the weeks leading up to the evaluation, I limited my reading to sites like the CDC which were reliable sources of information in a sea of iffy sources. But I read them through a lens colored by years of seeing ASD stereotypes in movies, television and online. The anti-vaxxer memes listing Autism alongside “death” and “SIDS” as if they were the same thing were easy to dismiss. But the rest were more insidious.
He’s all the things ASD stereotypes are not: sociable, talkative, friendly, curious, empathetic. As a result of this and my newfound “knowledge,” I walked in half-expecting to be told he was growing out of his sensory issues and we needed to be patient.
Turns out I had no frigging clue.
My son did beautifully at the evaluation. A doctor played with him in a cheerful toy-filled room. She asked him to complete challenges that were easy for him. But some were confusing, and twice he settled his head in his hands and cried. At the end he curled up in my lap and slept as the doctor gave her diagnosis.
She explained how children who met a certain number of criteria from two categories are diagnosed with Autism, and then she went through a long list of criteria and explained that my son met every single criteria for Autism Spectrum Disorder.
Every. Single. One.
It made no sense. I suspected he would meet a few of the conditions on her list, but every single one?
As she talked, I realized that I’d built a mountain of internalized stereotype about ASD that overshadowed reliable information and needed to disappear if I ever wanted to support and understand my kid. Moreover, that despite “researching” online, I had no idea what was going on. I was worse than ignorant – I was ignorant while thinking I knew a little something. It was blindsiding, and in retrospect, exactly what needed to happen.
“This room,” the doctor observed, “is full of toys designed to catch kids’ attention. . . your son played with a wrench. It’s not even a toy. He only brought you a toy to look at when he wanted help fixing it.”
I felt a stab of guilt because I had been proud of how he fixed the toy, and always encouraged his love of tinkering with real things. For over an hour one summer day, we experimented with PVC pipe and our garden hose. He helped drill holes in lengths of pipe using different sized drill bits, and we watched the water pressure change. He was enthralled.
“I thought his interest in building real objects was a good thing,” I protested, “But it turns out it’s a bad thing?”
The doctor said “abnormal isn’t the same as bad; it just means something that is outside the mainstream. Whatever spin people put on it out there is on them” she said gesturing out the window. “Most two year olds won’t spend an hour on anything, especially not making sprinklers out of pipes. That doesn’t make it a bad thing. Just different.”
Not bad. Just different.
Some of his differences make it hard for him to function. But, the problems he has coping with chaos, texture, noise and uncertainty come not from a “bad” thing” in his head, but from a disconnect between his needs and the way our world works.
This perspective makes all the difference. It helps that he’s remarkably self-aware, and often pulls himself away or takes a break when activities are overstimulating. We’re learning to pay attention, be respectful of that need, and put in place tools to help him survive life when it disconnects from what he can handle.
That said, I have not come to terms with this diagnosis yet. Though, reading work by people with autism, and connecting with the local parent advisory council is helping.
Acknowledging that I will never see the world the way he sees it, or experience sound and texture the way he does is a first step. At two years old, he is already in uncharted territory, and I can only support and love him from the outside, and try to understand enough to encourage the strengths that come with his unique brain while not penalizing him for the disconnects.
The strengths are incredible. So much comes easy for him: letters, numbers, building, music, and problem solving. These have become the places where we can connect with him on his terms, build on his strengths, sneak in some occupational therapy practice, and help him gain confidence.
Still, I am nervous about what’s ahead for us, though it’s clear that nearly all media portrayals, and common assumptions are unhelpful. The diagnosis opens doors to tools and treatments we could not otherwise afford, but it also puts him squarely in the line of fire for prejudice and hatred.
With SPD, there were glares during meltdowns, assumptions that we were crappy parents, that SPD doesn’t exist, or he was a brat. But, that was doable. The word “Autism” brings out so much worse in people.
There are the assertions from many anti-vax fronts that somehow Autism is worse than death. There are entire online communities built around hate speech targeted at people with Autism. There are articles and memes saying people with Autism are violent criminals (they are not, though there’s some interesting reading on this). The hate ranges from casual to vitriolic, and at some point he will realize it exists and have to face it without our help.
None of us are ready for that moment. But, I take heart that when it occurs, he will be older and more independent, and that maybe in the intervening years public perception will have improved regarding mental illness in general.
But beyond that I am lost when imagining his long-term future. Today is easy though: costume building, preschool, OT, trains. Tomorrow will wait.
featured image from Wikimedia.