Why My Son on the Autism Spectrum Shouldn't Try to Act 'Less Autistic'
This story has been published with permission from the author’s son.
I just had one of “those moments” right in my kitchen, on a cold day in April, wearing a Shenandoah University sweatshirt, being there with my son, Ryan. This moment hurt my heart so much. The moment began with these words: “And this year I’m not going to be so autistic.” The words came from my beautiful son’s lips as he smiled with pride at the thought of not being “so autistic.”
We were talking about tech week for Ryan’s high school musical rehearsal. Two of the rehearsals would be anywhere from eight to 10 hours long, which meant they would run through the dinner hour. Of course, dinner is provided for the kids, but since Ryan has a limited diet due to his texture sensitivities, I take dinner to him. Last year, we got the timing off and his milkshake was melted and his burger and fries were cold, and he was terribly upset, so I had to go get meal number two. Some moms said to me, “Wow. You are a better mom than me, I wouldn’t have gone back twice.” I’m not a “better mom,” I’m just a mom traveling a different path than those moms.
In order to avoid another mishap like last year, Ryan and I were in the kitchen trying to come up with a plan, discussing different ideas for meals and how we could time it better this year when “the moment” occurred and those words were spoken with such pride, “And this year I’m not going to be so autistic.”
No. Just no. No, no, no, no. Dammit, no!
Trying not to be “so autistic” is not something my son should have to ever strive for, and saying it should not make him smile and feel some sense of accomplishment. Yes, it’s OK if he is proud that he is more flexible, or takes pride in advocating for himself, or is pleased that he is planning ahead a little better, or feels courageous enough to try a new food. But he should never have to feel good about being other than who he is — being autistic is intrinsically how he sees, feels, understands and interacts with the world.
Back when Ryan was officially diagnosed, it was under the DSM-IV, so his actual diagnosis was: Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). “Pervasive” is the word you must understand. It means that autism impacts Ryan’s neurology and how Ryan sees and interacts with the world. Autism is prevalent and inescapable in all areas of his life so he should never have to feel like he can be more or less autistic. His neurodiversity is an inherent part of his identity and he cannot be separated from autism any more than he can be separated from the color of his skin. He cannot separate how he exists from who he is and he should not ever think he has to.
Trying not to be who you are would be terribly uncomfortable and probably not something most of us even think about and certainly not something anyone expects of us.
For those of you who may not believe that autism is pervasive and intrinsic to the autistic person, let’s look at it this way then, do we expect people who are visually impaired to decide this is the year, this is the day, this is the moment they should try and see better? Does the world think people with a physical disability should be less physically disabled today than they were yesterday? These individuals can’t look at their parents and say, “And this year I’m not going to be so physically disabled.” Ryan and other individuals with so called “hidden disabilities” like autism shouldn’t have to say that, try that, or think that either. No one’s disability or label should “define them,” but for the autistic population, their neurodiversity impacts all aspects of who they are and how they go about living their life. They should not ever have to take pride in trying to be someone else.
The reason Ryan’s words, “And this year I’m not going to be so autistic” were such a profound moment for me was because in that moment I realized there is still so much more understanding and acceptance that is needed, both for my son and the rest of the world. His pride in trying not to be “so autistic” is not for him, it’s for the neurotypical world who still fail to accept and respect neurodiversity. No one has the right to deny who my son is and he should never take pride in trying to be more or less “Ryan.” Hopefully, the more we educate others, the more accepting the world will become. Maybe one day Ryan will be more accepting of his neurodiversity and never feel like he shouldn’t be “so autistic” when his milkshake melts and his fries are cold because honestly, as someone the world deems “neurotypical,” cold fries piss me off, too.