“If you’ve seen one child with autism, you’ve seen ONE child with autism.”
Every single autism blog you’ll ever read will eventually repeat some variation of this quote, and I don’t intend to be an exception! This pithy little number encapsulates what every autism parent will learn, the easy way or the hard way: two autistic children will be as different as two neurotypical children.
I’ve observed that the variety of personality idiosyncrasies found in autistic children is unusually varied, even within the confines of the actual symptoms. Let me explain. I’ll use Down Syndrome as an example.
I’m not an expert in Down Syndrome, but I grew up with several children with Down, and in my observation they were all, without exception: extremely friendly and outgoing, emotionally sensitive, empathetic, lower-IQ but with good attention spans, and highly vulnerable to suggestion and manipulation. This isn’t to say that all people with Down Syndrome are the same! However their unique personalities tend to manifest outside of their symptoms. So while each is still a distinct individual with distinct dislikes and likes, patience, playfulness, frustration threshold and so on, the description above still very likely will describe all Down Syndrome people with moderate to significant accuracy.
What’s strange about autism is that so much of their unique personality is manifest within their symptoms. If I were to compare Dmitry to Autism Daddy’s son Kyle or Big Daddy’s son Griffin, there would be stark differences–even within the scope of symptoms. If I described Dmitry as very sensory-seeking, rarely if ever bothered by loud, strange noises or lights, indifferent to touch and being looked in the eye, insensitive to sharp pains so much that stinging ants are no bother and will chew on a shaving razor til blood runs down his chin (that one freaked us out!) and so on… many autism parents would shake their heads in wonder. Sometimes a child will sit in a corner and patiently line up his blocks, while Dmitry will run around with a brush in his hand from sunup to sundown. Sometimes a child will be overwhelmed with being swept up and thrown in the air and hugged and handed to a stranger, but Dmitry revels in it. Some children will strike out at anyone who attempts to intervene in a chosen activity, but Dmitry’s pretty go with the flow, and I’ve never seen him strike out in anger or wanting to be left alone. Some children will repeat 8 different phrases though they haven’t heard them in a year, while Dmitry’s words are so few and far between that it’s like he’s trying to convince us he can’t talk at all!
So here we arrive at philosophical conundrum: what is being 3, what is Dmitry, and what is his autism? When he’s gentle when something is taken away from him, is that Dmitry the person, or is it his autism-related detachment that prevents him from caring enough to lash out? When he screams for 3 hours straight and nothing can console him, is that overwhelmed senses or frustration at not being able to communicate or just “terrible threes?” When he runs around dashing everything to the floor in hopes that it breaks, is that Dmitry being 3 or Dmitry being autistic? When he laughs at nothing in the middle of the night, is that the amusing little autistic world in his head, or is he just laughing at a thought that a 3 year old would find funny?
All these questions lead me to hesitate sometimes to call his disorder an affliction, or a sickness, or a disease, or even a disorder. Sometimes it’s easiest to brand his most difficult tendencies “autistic” as an epithet, but it’s probably not that accurate. Even to define the majority of his personality traits as “good” or “bad” is a massively subjective exercise.
It’s food for thought, and I don’t have any conclusions. Do I love him the way he is? Sure. Would I change anything about him if I could? Yep. Would I “take away his autism” and everything that apparently goes with it? No. Is it an indelible part of his being? I just don’t know.