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Respect My Autistic Son's Voice When He Uses It

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“Wow, he doesn’t look autistic!”
“It certainly doesn’t show.”
“I never would have guessed autism.”

I’m sure many of you, and your autistic loved ones, have heard something along these lines plenty of times. These comments more often come from a place of ignorance and unawareness, rather than intentional hurtfulness. This is a post in and of itself which I will save for a later day, but yes, I have heard these exact phrases many, many times, but not once have these words been uttered when my son has been in any type of medical or dental setting.

It makes sense that my son “looks autistic” when he is at a doctor, a dentist, an eye doctor, etc as these types of interactions are not part of his normal routine and most times we can’t exactly predict what is going to happen. This “new” and unpredictable situation often causes him a great deal of anxiety. I mean look, I have anxiety with an extreme and irrational fear of flying (the fear is more about dying in a fiery plane crash), so when I boarded a plane a few weeks ago for the first time in 26 years, I looked much more anxious sitting in the Admiral’s Club with many seasoned flyers waiting to board a plane that I couldn’t 100% predict the outcome of than I do sitting on my back porch with my family and friends where I know with almost certainty I am not going to die in a fiery plane crash.

So two weeks ago, when my son was at the podiatrist and he asked to try an oral antibiotic rather than have the “procedure” done (removing part of his toenail), I respected his wishes. Well, 10 days later, the toe hadn’t improved and it was clear the “procedure” needed to be done. And guess what, my son was the one who suggested it. “I don’t think this is going to clear up on its own, I’m going to have to have the procedure done. Do you think you could talk to Dr. B about getting me the pill that helped you calm down to fly?” Umm, hell yeah I can. So after a chat with Dr. B, we got the go-ahead for a small dose of Ativan to help feel a little calmer prior to the procedure.

The fact that my son is willing to even consider having the procedure done without being “knocked out” is not only a sign of personal growth and personal self-advocacy, but I think it’s also because he was respected and heard initially when he wanted to try the antibiotic. Asking him for years to use his voice, then not respecting it when he has a reasonable request just tells him that no one is listening, which makes him silent once again.

Although my son is a fabulous self-advocate, when I called to make the appointment, mama bear still stepped in. “You need to give him the podiatrist who is the most patient, most accepting and most kind. That doctor needs to understand that if this procedure typically takes 20 minutes, it may take my son 40 minutes to get through it. The doctor will need to ‘show’ not ‘tell’ and if she wants to meet him where he is, she needs to listen to his voice and respect it because it has taken a lot of work to get him to use it.”

“We will take good care of him,” the receptionist promised. Damn right they will, with a mama bear hovering right next to their surgical instruments and her cub, protecting him and making sure he is respected, regardless of how he “looks.”

Originally published: August 30, 2021
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