My son Nicholas is 13, and he juggles balls and rings. Sometimes we talk about him becoming an entertainer or even joining the circus when he gets older. (The younger brother of one of his good friends recently got a unicycle. I’m dreading the likely outcome here.)
But when Nicholas was younger he was much more the spectacle.
Nicholas is autistic, and like some children and people who are autistic he would have the fiercest tantrums.
He would scream. He would flail and kick his arms and legs, hitting and kicking anyone or anything. He would pound his head against the nearest hard object — a wall, the floor, the concrete of a parking lot. He would hit himself. He would ferociously scratch and stab himself and draw blood.
Doing or seeing specific things would trigger him. Not doing or seeing specific things would trigger him. Things out of routine or expectation would absolutely trigger him.
Nicholas, already slow developing and already showing some traits indicative of being on the autism spectrum, lost all speech when he was one and a half. It took years for him to learn to communicate verbally again. He still has diagnoses of severe expressive and receptive communication disorders.
His obsessive-compulsive aspect, also since formally diagnosed, combined with his intense frustration in not being able to communicate, and he tantrummed.
That was a fairly effective means of communication, by the way.
Nicholas loved dogs. And then he was trampled by a couple of overaggressive dogs at a friend’s gathering. After that, for years and years, he was absolutely terrified of dogs.
He’d hear a dog bark and instantly panic and take off in the perceived opposite direction, running indiscriminately, completely mindless of streets or traffic or any such actual danger.
He kind of looked like Forrest Gump dashing off, and you can almost hear the picture in his head: “Run, Nicholas, run.”
He was quite the sight — quite the spectacle.
Little kids — on the playground or in stores — sometimes would walk up to me and ask me what was wrong with him.
After they or we turned a corner and so went out of shared sight, my son would cry.
I remember sometimes looking at Nicholas as if he were a stranger I didn’t know, trying to see how he was seen by other people.
This was surprisingly difficult to do: to detach from my child in that way and see him completely objectively. Or, rather, I suppose I was trying to see him subjectively as other people would, in the way we often do strangers. And, as we unfortunately tend to do with strangers, we come to conclusions and make judgments. We intuit and assign context and circumstance, story and blame.
With Nicholas, it wasn’t just the common episodes of tantrum or panic that distinguished him. It was his more general day-to-day aspect, as well. He was nonverbal, and he was unresponsive to people much of the time. He seemed disconnected and unaware, looking off.
He was different. He was strange.
In society in general, and within that group especially among parents of autistic children, and within that group especially among parents of children newly diagnosed as autistic, and especially even more among many medical professionals, there’s a language of hopelessness or desperation associated with autism.
Autistic means lost. Autistic children are disordered; we need to do something for these children — we need to cure them.
Parents of children diagnosed with autism grieve and despair; we need to do something for these parents — we need to help them move through the steps of grieving and in so doing accept this tragedy they cannot change.
That is, grieve their living, breathing children. Lament their inability to change — or change out — their living, breathing children.
This was not Nicholas to me. None of this was Nicholas to me.
But when I stepped away from knowing this little magical, spiritual, heart-centric person made of nothing but love and fairy dust, when I stepped out of myself and my own life context of my family — well, if I’m honest, I could see how someone not knowing better (and, frankly but not meanly, being simply ignorant) would look at Nicholas and see a lost child. A disordered child. Someone who needed to be cured. Someone to be grieved.
It reminded me at the time of seeing a homeless person on the street.
When that happens — sometimes every day, sometimes repeatedly each day — we tend to strip away a sense of humanity and acknowledgment of humanity much too easily and objectify the person into a thing.
Most people look away most of the time.
Now, to be sure, most people look — may even say “Hello” or “Hello, how are you?” — some of the time. This helps us feel like decent people, especially during all the other times when we fail to do it.
It’s a generalization, of course, but certainly a true one: We are far less likely to say “Hello” to someone who seems to be homeless than to someone who seems, well, more like us.
And as we walk away — as we hurry away, eyes averted — we come to conclusions and judgments. These may be actual thoughts or, more likely, they’re unthought thoughts, present as notions and feelings but not consciously acknowledged.
It’s a generalization, of course, but certainly a true one: It’s an awful lot just like that when most people encounter autistic people or even just their families. There are conclusions and judgments, notions and feelings, consciously acknowledged or not.
And most people hurry away.
It’s not mine to speak for Nicholas, but I do suspect the last thing he’d want is for anyone — anyone at all — ever to feel sorry for him.
And no one need feel sorry for me, either: It’s Thanksgiving as I post this today, and along with my older daughters Nicholas is the greatest blessing of the entirety of my life, from start to finish. He gives more each day than I can explain or express, and when I say he’s my hero, I really mean it.
That’s because each and every day he overcomes the spectacle of this crazy, disordered neurotypical world.
I suppose I should say, too, that Nicholas doesn’t want you to hurry away. He wants to get to know you, even if that desire isn’t obvious. He wants to be your friend.
And, believe me, if you get to know him, if you get to be his friend, then you, too, will give great thanks.
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- The Egg Chair
- Autism and Grief
- Nicholas Thurman Jackson Hemachandra: the puzzle known as Superman
- Sharing a Diagnosis of Autism
- Roads Not Taken: Lessons in Autism, Inclusion, and Life
Thank you very much for your interest and engagement. I truly appreciate it.