Understanding, Not Pity

When I tell people my youngest child, Aj, is Autistic, I’m always angry when I receive pity. I know that he gets confused when someone says hello to him and he very carefully makes eye contact back to them. When they repeat themselves, or when they don’t acknowledge his eye contact, he gives me a confused look and repeats his actions. Then I explain to the person that Aj isn’t verbal, but he is saying hello in his own way. Then the looks of pity, the condolences. I smile and I nod, and I remind myself that these people only know what they see on TV. They only hear whats on the news. They see the stigma of popular culture, and not reality.

Aj doesn’t have a disease. Aj is not going to die from being different. He is no more in need of a “cure” as, let us say, a person that only speaks French needs to be cured of it when they move to an English area. That is not to say that he doesn’t need assistance. Just like students can take French Immersion, Aj is in English Immersion. He learns his own way, he speaks his own language. His body even feels sensations a different way. However, while sometimes a challenge, this is not a tragedy.

He is learning to speak using a “PECS”, Pictures Exchange Communication System. He loves it, and so far, he’s really good at it. He understands that it’s a way to get everyone, not just his immediate family, to acknowledge him. He’s going through the “gold standard” of Autism therapies, IBI (Intense Behavioral Intervention). Not that he has any behavior problems, far from it! However, mainly, this is a learning tool, where he is being taught to put up with all the people all around him that are inflexible, perhaps even unwilling, to learn how to communicate with someone that is different than they are. At least, that’s how we, his family, see it.

People hear “autism” and they tend to think Rainman. Some might think of the celebrities that talk about how vaccinations are BAD. Or they expect that we give to foundations trying to “cure” autism, as if it were cancer or diabetes. They just assume that he is a handful of violence; which is annoying since he’s the cuddliest kid you’ve ever met, and he charms everyone that’s ever actually met him.

The worst fallacy is that he must have “caught” autism from his vaccinations (which are designed to keep him from catching truly horrible diseases and infections). He has a genetic mutation that is linked to autistic children. I’m Canadian and had access to health care able to pay for the tens of thousands of dollars worth of genetic testing that were required to determine the reason he is autistic. It’s in his genes; it’s a part of who he is, the same way and for the same reasons that his hair is blond and his brother needs glasses.

Would I change my child? That sounds to me like he’s a car, or a defective piece of merchandise. When someone asks me if I would “cure” Aj if I could, I have this ridiculous mental image of a patron at a restaurant coming up to me, poking the food in my plate, and asking why I don’t ask the waitress to take it back because it looks disgusting. Aj is who he is. To change his genetics would give me a different son, and I don’t want a different son.

He was my miracle. I never expected to be able to bear even one child; conceiving his older brother took two years of fertility treatments. I didn’t even know if I could have more children. Aj came into my life as a gift from Nature. If I would change anything about him, it would be to make the world a more tolerant place of differences so it would be easier for others to accept him the way we, his family, do.

Aj is a brilliant little guy who loves swimming, trains, jumping on the couch and bed, having stories read to him, drawing; any number of “normal” things like any other four year old. He and his older brother are the light of my life, part of why I love life as much as I do and cherish each time I wake up to another wonderful day. My son is not a tragedy. I wish people would stop treating him like I should be in mourning.

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