Wednesday, February 22, 2017

Parents: Don't Hide Your Children's Autism Diagnoses From Them

Reid Knight

Dear Parent who is considering not telling your child about their autism:

Like many autistics, I found out about my autism through Google.

Unlike many autistics, Googling didn’t lead me to a self-diagnosis of autism (though I view self-diagnosis as just as valid as a professional diagnosis). My parents only told me I was autistic after looking at my internet history, and finding out that I already knew.

I was fourteen years old when, out of curiosity, I Googled the doctor I had been seeing for as long as I could remember -- and discovered that the medication cocktail I had been taking since I was a toddler was actually an “alternative” treatment for autism. For twelve years, I was given 10 to 20 pills each day, without being told what they were for. I was also subjected to Applied Behavioral Analysis (ABA) and other therapies without being told why I needed them.

Family
Photo © Kamaljith KV, Creative Commons license
[image: Black & white photo of Indian parents holding a
toddler's hands, standing in ocean surf, seen from behind.]
My story may be an extreme one, but there are many reasons why a parent might choose not to tell their child that they are autistic. In my case, my parents claimed that my treatment cured me of my autism (although if that was the case, then it didn’t make sense that I was still following the treatment protocol, but I digress).

Along the same lines, some parents don’t see their child’s autism as a "big enough" issue to warrant telling them about the label, or they don’t want their child being seen as “different.” Other parents have expressed fears that their child will use their autism as an excuse to misbehave, or not reach their full potential.

All these examples boil down to the idea that letting a child know they are autistic causes more harm than good. Let me tell you why the opposite is true.

You may think that an autistic child won’t notice they are different than their non-autistic peers unless someone tells them, due to a supposed lack of social awareness. I have not met one autistic person (myself included) who hasn’t noticed their difference early in life. For me, noticing came through being bullied at school and at home. And since I didn’t know I was autistic, I just assumed there was something wrong with me and that I deserved what I got. I learned that intrinsically, I was less than a person, since I didn’t have a framework to tell me otherwise.

When you learn that you are less than a person, being abused becomes normalized and expected. When I was six years old, I had a meltdown in a music class due to sensory overload. The teacher’s response was to lock me in a closet for the duration of the class. It was dark. I was terrified. It was normal. I deserved it. I can only hope those aren’t the type of thoughts you want your child to have.

Which brings me to another point: because I wasn’t told I was autistic, I had no idea how to advocate for myself and my needs. Rather than using my disability as a crutch, it was not knowing about my disability that led to me being unable to reach my full potential. Trying to fit into a world that seemed out to get me wore down my physical and mental health. My grades slipped, and I got dangerously close to dropping out of school entirely. I lost the few friends I had, and became consumed with shame about myself and the things I couldn’t do, things that seemed to come so easily to everyone else. I didn’t know that with the right accommodations, I was fully capable of doing most of those things -- and that there was no shame in choosing not to do certain things that were too difficult for me.

If I had been told I was autistic before I was locked in the music room closet, maybe I would have known to ask for a break when things got overwhelming. Or maybe my teachers would have had a plan to help me de-escalate my meltdown. Or, even if I still got locked in the closet, I would have had the knowledge that it wasn’t an okay thing for an adult to do, and could have told another adult about it. But since I didn’t, I blamed it all on myself, and stayed silent.

Perhaps the worst part of not knowing they are autistic is that, inevitably, your child will find out someday that they are autistic -- whether it be from the Internet, like me, or just from an acquaintance or service provider offhandedly mentioning it. And when that happens, what will happen to the trust between you and your child? They will realize you kept very important information a secret from them for their entire life. And it’s likely you also told other family members and friends about your child’s autism, but not your child. That will make your child feel like they were the only one who didn’t know. Nobody should ever feel like everyone else knows more about their own body and their own life than they do.

And once that happens, without being able to trust their family, who will they have to fall back on for support? Navigating life as an autistic person is difficult enough without a reliable support network. Do you want your child to feel alone in their fight?

It has been more than a decade since I found out I am autistic, and I am still working through the trauma from not knowing -- and it is likely something I will continue to struggle with for the rest of my life. The tools that are helping me to heal have overwhelmingly come from within the autistic community. I can only wonder what my life could have been like, if I had been given access to such resources as a child.

Panents, you have the chance to give your autistic children coping tools. When you decide to do so is a very personal decision, and I understand that. But please consider that my negative experiences from not knowing about my own autism were already happening by the ages of five and six.

Please don’t wait too long, or the damage from your child not knowing they are autistic will already have happened.

Sincerely,

An autistic adult who would have been better off knowing