Talking about autism: When I share that I have a child on the autism spectrum, people usually respond with genuine kindness and curiosity.
For the most part, I don’t mind the questions and comments. There are a few responses that, however well-intentioned, make me feel bad. Here are three questions that I would ask friends, family and fellow parents to avoid:
“But he’s high-functioning, right?”
The term “high-functioning autism,” although not an official diagnosis is often used to describe kids on the spectrum who have verbal skills and are more able to blend in with their typical peers. They’re perceived as being on the “closer to normal” end of the spectrum.
In actuality, the autism spectrum is not that linear. A child might be high-functioning in one area but quite impaired in another. They might pass as normal in one set of circumstances but appear utterly disabled in a different set.
At a recent play date, a mom who knows my son is on the spectrum commented on how “high-functioning” he is. At that moment he wasn’t doing anything overtly autistic. He was able to smile and carry on a conversation (to the extent of any five-year-old). In her eyes, he was functioning just fine.
What she didn’t see was the sheer effort required to get my son out of the house, the tussle over shoes and coat, the screaming protests as I pulled him toward the car. She didn’t witness last night’s battle over dinner or the meltdown when it came time to brush his teeth. She couldn’t know about the hours of therapy that had gone into preparing him to even have a play date.
The problem with “passing” is how precarious it feels. Would this mom have been as accepting of my son if he suddenly stopped acting so “high-functioning” and exhibited his more autistic behaviors?
Calling my son high-functioning might seem like a compliment. In fact, it just makes me feel like you don’t really see my child – and that, if you did, you might not invite him back for another play date.
“Have you tried cutting out gluten?”
I’ve been asked this by family, friends and near strangers in the grocery store. Going “gluten-free” has become the cure du jour for all sorts of ailments, including autism.
It’s true that some parents credit a wheat-free and/or dairy-free diet with a decrease in their child’s autism symptoms. I don’t question those claims. I admire those parents’ commitment to what is surely an arduous road given that getting kids on the spectrum to eat anything can be a major feat.
However, as of yet, there’s no scientific evidence pointing to a link between autism and gluten (or dairy). That’s not to say that one doesn’t exist or that it shouldn’t be studied further. Until the research does exist, I’m sticking with the foods my son will actually eat: bread, pasta and yogurt.
Parents of kids on the spectrum already feel they are not doing enough to help their child, even as they spend hours a week shuttling their children to various therapies, battling insurance companies and advocating for better services at school and in the community.
The suggestion that there is something else we should be doing, such as changing our child’s diet, is demoralizing and unhelpful.
What would be more helpful is to simply ask, “What can I do to support you?”
“My kid does that too.”
Whenever I share about the challenges we face with our son – whether it’s his fussy eating, emotional outbursts or resistance to homework – parents of typical children inevitably chime in with, “My kid’s a picky-eater too” or “All kids have tantrums.”
I believe this comment is meant to assure me that my child is perfectly normal. The problem is my child isn’t perfectly normal. If he were, he wouldn’t be diagnosed with autism.
Of course, all kids throw tantrums now and then, refuse to eat certain foods and resist difficult tasks. The difference with kids on the spectrum is in frequency and intensity.
Having a child who melts down once a week is not the same as coping with three meltdowns a day. There’s picky eating and then there are kids who require food therapy. Most kids act out from time to time but don’t require a school behavioral intervention plan or hours of in-home treatment.
To a certain extent parenting is universal. All parents face challenges. At the same time, parenting a child on the spectrum is a unique experience and should be recognized as such.
Instead of saying “All kids do that,” try saying, “That sounds really hard.”
Then I can better listen while you tell me about your own unique struggles.
Lynn Dixon is a mother and a writer living in Ballard. You can connect with her at https://www.facebook.com/SomewhereOverTheSpectrum/
Originally published June 2017
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