Last year, we signed Kane up for Cub Scouts, not sure how it would go. Jeff had already reached out to the membership chair to notify her of Kane’s autism diagnosis and ask if he would be welcomed in the group. We weren’t sure if his diagnosis was communicated to anyone after that point, but matter of fact seemed best as I handed over my registration check.
“Kane is on the autism spectrum,” I said. The look that crossed the woman’s face was one of concern.
“He’s high functioning,” I quickly responded, and immediately internally kicked myself.
That was like saying, “Don’t worry. It’s nothing.”
For those of us who have parented a child on the autism spectrum, it’s absolutely not nothing. We all are where we are, in part, despite autism and, in larger part, because of it.
My son might pass for neurotypical during certain activities, but outside of those times, he will also stim visually with a movie (either live or one running in his head), stim verbally while reading out loud, sensory seek by bouncing, use echolalia in casual dinner time conversation, insist on scripting in painstaking sequence during our nighttime routine, wear headphones at night so he can’t hear the dog barking three doors away or the air conditioning turning on in the summer time…or any number of other autistic tendencies that are also specific to him.
In that very moment, I felt like I’d discounted our entire journey to make someone else feel less uncomfortable. I was suddenly a traitor to the cause of acceptance, too uncomfortable myself with the idea of my child being seen as a burden that I ratcheted down his needs into a box that I thought I could contain. (Funny thing is I couldn’t. He decided that Cub Scouts wasn’t for him by blowing the lid off of the box within the first three months. And he was perfectly okay with that.)
I’d said the parental justification of what I’d heard others say far too often: “But he looks like he’s doing so well!” This is a statement meant by others to acknowledge the fact that he’s not acting in ways that look like autism. To them. In that moment.
But it’s a statement that also completely negates how hard we all worked to get to these seemingly “normal” moments, and it also discounts the many days we are going to have in the future that don’t fit someone else’s view of what “normal” is. This woman could have easily shown her concern for a variety of reasons, and perhaps my silence would have given voice to them, but instead I’d filled the space to minimize the awkwardness. I vowed then and there to kick that phrase out of my vernacular.
The thing is there is no set definition of high functioning, similarly to how there’s no set definition of “normal.” (I’ll go even further and say that “normal” doesn’t actually exist, and why I insist on putting the word in quotes.)
Autism is a spectrum disorder for a reason. The classification of the diagnosis has changed in recent years to incorporate what was previously referred to as Asperger’s, also considered to be the high functioning part of the spectrum. There are people who still want to differentiate between Asperger’s and autism for a variety of reasons. To me, the labels aren’t nearly as important as the understanding of what the diagnosis can entail, and the understanding that high functioning might mean different things to different people.
Kane might pass as neurotypical in certain social situations, but anyone who spends any consistent length of time with him can see his place on the spectrum. He will also often hold off on displaying some of his more autistic tendencies in certain settings and environments, and then fully express them at home. That’s okay. Our home is his safe place. That means that sometimes the excitement and chaos happen only at home, and often even our extended families don’t witness the extent of what Jeff and I do because we try to never push Kane to that point of discomfort.
I’ve had a couple of realizations when dealing with others’ recognition of Kane’s diagnosis:
1. People don’t automatically understand autism.
We thought we knew what autism looked like. We had friends whose autistic children exhibited traits that our son did not. We thought that if our son had autism, it would be apparent. He would be non-verbal. He wouldn’t make any eye contact. He wouldn’t like to be touched.
But that wasn’t our experience. Our son talked. He stared at people intently. He loved to cuddle. Sure he had his sensitivities and his obsessions and exhibited a range of interesting traits, but he was also aware (enough) of the world around him that we thought his development was typical.
We were wrong. And we’ve since learned about autism through a combination of living with it, supporting it, and educating ourselves about it.
Which leads me to the second thing.
2. People don’t really learn about autism until they have reason to.
This is probably true of most other disabilities or medical maladies in life. The subconscious point is that it doesn’t affect you directly…until it does. And even if you dance around the understanding of something, you might not really learn about it until you have reason to. Until you’re the parent, the grandparent, sibling, close family friend, counselor, teacher, principal, community volunteer where a kid with autism shows up to participate. Like we did that day, during Cub Scout registration.
I realized a few days later, after ridding myself of the guilt from my moment of weakness, that my job isn’t to forcibly educate people about autism, nor is it to make them feel better about their own discomfort by minimizing what autism is. My job is to be comfortable enough with who my child is that I give him plenty of opportunities to be himself and support others’ acceptance of who he is.
He is Kane. Fully, completely Kane. And that definition of himself is his to own. He is a child who happens to have autism and who requires and needs all of the things in life every child needs. Love. Kindness. Understanding. Support. And to be believed in. To know that he is capable in this life on all days and in all moments, not just the ones others witness.