What Makes Identity Unique?

“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.

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10 thoughts on “What Makes Identity Unique?

  1. Genevieve says:

    There are so many times that I ask myself those same questions with my six year old son. It is hard to point at any one act and say “that is his autism” or “that is him being six”.

  2. Miss Paryss says:

    This post was friggin awesome to read! I just posted my new blog tonight on how Serenity is some many different characteristics all bundled up in one little 4 yr old Autistic cutie pie. Defining Dmitry’s traits? Yeah, sometimes there’s just no defining them! Love your blog!

    • pianomikey says:

      Thank you for your kind words Miss Paryss! I do put a lot of thought and work into my posts, and I’m thrilled to have my computer back! Hopefully I’ll be much more active very soon.

  3. mewhoami says:

    I really love how much you consider every aspect of autism from different point of views. Also that you are able to see and point out Dmitry’s unique traits, instead of simply classifying him. That will be a huge help to him in gaining successes along the way and for you as a parent. Autism is hard to deal with, but when you understand your child and what makes them tick, it makes dealing with it so much easier. I applaud you for the obvious love and concern you have for your son and his well being.

    • pianomikey says:

      Thank you for your kind words. As I am still new to this whole world, I have a lot of working out yet to do. Ultimately, this blog is still just an expression of my opinion on why I think Dmitry is really neat :) it’s supposed to be silly first and musing second, but I’ve been musey lately.

  4. gareeth says:

    Pervasive does sum up how hard it will be to disentangle the person from all those categories. Of course with autism they pretty well did cover most of what it means to be a person. It’s a challenge to do anything someone won’t either credit to my autism or blame on my autism. I know I have a personality in here somewhere… Oh wait I think I should not have a sense of humour..

    • pianomikey says:

      I’ve slowly tried to move in the direction of blaming DMITRY or crediting DMITRY with things, but it’s very difficult. Is he so wild and undisciplined because of “the autism” or is it because I’ve blamed “the autism” instead of him?

      Love that kid, but he can be a source of nearly endless frustration.

      • gareeth says:

        I am 45. I hate to break it to you but my relatives still say this.

        It’s hard as the whole people as distinct from their neurology could be a debate even when that neurology is not outside the normal experience. That really is why there is an issue though as because it is most of the ways humans experience life and are experienced falls in the categories,

        No matter what though while those very likely to cause an issue areas need to be taken into consideration a parent draws boundaries. My own parents claim to have surrendered when I could walk and when I knew of these mysterious things like bedtimes and the like I wanted them.

        I did respite care for much of my adult life and most kids no matter how “severe” were much the same in liking structure with the occasional dose of planned havoc.

        • pianomikey says:

          Thank you for sharing your adult experience. I think that far too few adults are heard, as “won’t somebody think of the CHILDREN!” hysteria reaches new heights (I’m looking at you, Autism Speaks)

          We’ve been working on getting some respite care for Dmitry but we live in a rural area that is hard to find services unless they’re willing to drive 45+ minutes.

          I have read everywhere that boundaries are (of course) important very important for all children regardless of age. Even though Dmitry is like a caged animal most of the time, he actually does his bedtime regimen very well. Everything else is a constant battle to get him under some level of discipline. The boundaries are there, but they’re largely theoretical at this stage.

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