5 things you should stop saying to autism parents
I don't speak for the entire autism community. Heck, I don't even speak for a neighborhood. I'm just one guy, one dad, and a newbie to this. Our son, who is just turning 3, was finally diagnosed with autism 5 months ago after a year of stumping experts. It's been a learning experience, and not just about theories and therapies and how to help him move forward. It's been a learning experience about how misguided or downright rude some people can be. I don't speak for all parents of children with autism, but here are five things that I wish people would stop saying immediately.
#5: Is he high functioning?
Total strangers will ask this, and here is why no one should. While all the therapists he's working with believe he will be, it is still somewhat early to know for sure. Many children are not even diagnosed at such a young age as 2 and a half so asking parents of a child with autism this question is pointless. It's also rude. Because what if we already had that answer, and what if that answer were no? What if he had been severe? Would you be happy you asked a total stranger to share such information? Does it mean we should feel any differently about our child depending on where on the spectrum they fall? It's like asking the parent of a neurotypical kid what their IQ is or if they have any special talents. Would you go around doing that?
#4: Have you tried...?
Just stop. If you're about to ask, "Have you tried a gluten-free diet?" or "Have you tried chelation?" or "Have you tried hyperbaric oxygen therapy?" just shut up. We have an actual vested interest in our child's future which you, not-so-kind stranger, do not. So don't assume we haven't consulted with everyone and researched everything and separated the quackery from the plausible and made educated choices about our son's treatment. Unless you're a close friend, and one who knows what they're talking about, don't make ill-informed suggestions.
#3: Don't say he's autistic!
As I said, I do not speak for the autism community, or should I have said the community that loves someone with autism? Do not try to lecture me on how I refer to my own son. If at times I use "person first" speech like many p.c. folks believe is gospel then that's fine. Example: my son is a child with autism. But if at other times I say: my son is autistic, do not preach to me. He's our son, and we will refer to him however we choose and not necessarily the politically correct way you demand we speak of him. He's not your son. I am his father. I have type 1 diabetes. I am a person with diabetes. I'm also diabetic. He's a person with autism. He's also autistic. We don't give autism such negative power that we quake in fear of it and demand it be phrased in a camouflage of words. Get over yourselves. We are not defining him by his autism. He defines and re-defines himself every day in many ways that have nothing to do with his autism. If I can say he's affectionate, strident, handsome and playful, I can also choose to say he's autistic. We don't run from this like it's a bad word. We embrace it. What you choose to say for your child is your business. Do not correct us.
#2: I'm sorry
I'm sorry? Did my child just die? Don't be "sorry" if and when I choose to share with you that my child has autism. Parents hear this constantly. I could be wrong but my gut tells me we hear this far more than parents of a blind child or a deaf child. Certainly far more than parents of a child with ADHD or dyslexia. Autism is not the end of the world. Not all people with autism change the world, just the same as not all neurotypical people change the world. But would you feel rather dumb to have told the parents of Charles Darwin or Albert Einstein or Mozart that you were "sorry?" It's not a death sentence. You don't need to say you're sorry.
#1: He doesn't look like he has autism
I have already dealt with this several times in just five months. People who think they're paying your child some sort of strange compliment are actually being incredibly insulting. Autism has no look. There is no defining physical characteristic of autism. There's a saying in the community (which goes along with the very concept of a spectrum) that if you've met one person with autism then you've met one person with autism. Just like personalities and likes and dislikes and so many other things can vary, the way a child looks has nothing to do with autism. One woman on my Facebook kept repeating this business about how he "doesn't look like he has autism" until I finally asked what she thought autism looked like. I eventually got out of her that she thought people with autism were "the ones who help out bagging groceries at the supermarket." She explained she thought Down Syndrome was autism. No, nothing to do with each other whatsoever. So please, stop telling parents of children with autism that they "don't look it."
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