You know how we have those moments that no matter how much time passes we know we will always remember, not just the moment, but, everything about it? Where we were, what we were wearing, who we were with, etc. The day we heard the word “autism,” I remember everything about that moment. The smell of the rain that had just fallen, the shirt I was wearing that was sticking to my back due to the warmth of the day and my anxiety, the location of the empty garbage can in the psychologist’s office that I could puke in if necessary…I remember all of it. And I also remember thinking later, mostly because I was uneducated, I was scared, and I was in new territory, that there would probably be very few moments in my lifetime that would cause me such heartache and worry than that moment did.
Well, I recently had another one of those moments (in my kitchen, on a cold day in April, wearing a Shenandoah University sweatshirt, with Ryan) and it hurt my heart so much more than that moment almost 13 years ago. 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” and I was sickened looking for that psychologist’s garbage can again.
We were talking about tech week for Ryan’s HS musical rehearsal. Two of the rehearsals would be anywhere from 8-10 hours long, so that meant they would run through the dinner hour. Of course, dinner was 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 2. 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…and 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.
Do most of you women out there wake up regularly and think, “Today I’m not going to be so female” or do you just get up and go about your day being female? Have any of you guys ever decided when the new year rolls around that this is the year you are going to “not be so male” or do most of you dudes start the year off with a new plan to be healthier, happier, but, still inherently male? The gender you identify with is intrinsically a part of who you are and that’s what makes you, you, so 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 and see autism as a “disability,” 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 that they should try to 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 time, this year, this day, I’m not going to be so physically disabled” and 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 and 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 that 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 and then 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.
Kate Hooven is a Central PA mom to three children, Kyle, Ryan and Emma. Her middle child, Ryan, was diagnosed with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified, an autism spectrum diagnosis) when he was 6; she stresses that anything she shares online, she does with Ryan’s permission. You can follow Kate here on her Keeping It Real blog; you can also follow her on Facebook, Twitter, and at her website, The AWEnesty of Autism.