What the Adults in My Autistic Child’s Life Don’t Realize About Me

We’re getting over the stigma about my son’s autism. I’m advocating — firmly and loudly — and I’m not afraid to look a little “weird” with him. If we have to bring a cardboard box to the grocery store so he can pretend to be a robot instead of rearranging the canned goods in alphabetical order, then we’ll bring a cardboard box so he can be a robot, and I’ll get a second to actually read the prices on the shelves.

I’ve learned the phrase to repeat to the school when they call and tell me he’s wandered out of the classroom or poked another child with a crayon or defaced the gymnasium floor with a rock he snuck in his pocket.

I say, “My son’s disability manifests as behavior. What are you going to do to accommodate his disability so he can participate in the classroom?”

I’m working hard to reframe my own understanding of his behavior at home, too, and to understand his disability manifests as behavior when he refuses to get dressed in the morning. He’ll sit on the floor beside the clothes I just gave him, but he’s so busy yelling about being cold that he can’t put his clothes on.

As my son’s diagnosis has come to light, I’ve learned I’m on the autism spectrum, too. During a year of intensive appointments and evaluations with a medical center specializing in kids like him, I was frequently caught up in a moment of “Holy sh*t, I was like that, too” and often “I am still like that, too.”

It’s beneficial because I understand the coping skills I’ve developed as an adult — I wear heavy bracelets on my right arm as surreptitious fidgets, I keep a notebook for writing lists, I listen to instrumental music while I work and podcasts while I drive, I know my personal rules for the clothing I wear and I don’t even bother trying to sit normally in chairs anymore.

But I wish the other people in my life understood this…about me.

It’s taken a lot of work for me to get people to see my son as someone with charming “quirks.” It takes a lot of support from me. I advocate. Social assumptions about gender make it easier: He’s a “weird” little boy, and he’s seen as “just a weird little boy.” Of course he’s obsessing over rocks and dinosaurs and bugs — “He’s a boy.” He’s forgiven for his behavior.

But in IEP meetings, I wish they’d understand that sometimes the parent of an autistic child might be autistic, too. When I need to write down everything that is said, when I don’t make eye contact, when I miss the signal to shake a hand, when I launch into the meeting agenda with no small talk, when I am not sitting “normally” in the chair and when I start doing the “weird” things I do with my body language.

Social assumptions about gender require girls and women to display a social awareness that is often lacking in people with autism. I wish the other adults who are involved in my son’s life worked hard to accept me as much as they work hard to accept him. I wish they recognized he and I share many traits, instead of seeing him as a problem to solve and seeing me as a resistant obstacle. I wish I’d get the same permission to be “weird.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.