Raising Autistic Self-Advocates

Goggles and towels, ready for swimming lessons

There is nothing like the pain of seeing your child’s needs ignored.

For neurodivergent kids it’s a guarantee. Society is designed for neurotypical people. Every place our kids go, their neurodivergent ways of thinking and being aren’t set up to thrive.

When the world doesn’t accommodate your kids by default, how do you prepare them? I want my kids to:

1. Notice and understand what is important to them.

2. Ask for what they need.

3. Know their needs are deserving.

I have stumbled through teaching self advocacy to my kids. I made loads of mistakes along the way! I used to think my job as a parent was to teach them to fit into neurotypical society. They’d be safer from discrimination if their disabilities were less noticeable.

But what I learned from the neurodivergent, disabled community was: if you mask who you are, you can’t be authentic and proud. This is dangerous to your health.

So I started talking to my kids about neurodivergent identity. The strengths of autistic brains, and ADHD brains. Things that are hard for our brains, but easy for neurotypical brains. About disabilities and how to support them: Wheelchairs and ramps for mobility. AAC devices for communication. Help from an education assistant for classwork. Brushing someone’s teeth, or helping them to the toilet if that’s what they need.

Then I had to stand by what I’d said:

When my kids get sensory insults, we remove the cause:

"Mum? These pants feel....wobbly on my legs. I just can't feel good."

OK you can go change.

"This cooked pasta is all broken in my mouth. I only like hard pasta."

I'll get you something crunchy to eat.

"Why is my hair long? I want short hair that doesn't hurt when you brush it."

Next haircut, we cut it short.

If my kids ask for help, I help. I may feel annoyed if they did the thing without help yesterday. But I try to not show it in my voice - I know neurodivergent skills are variable.

My kids decide how they like to socialise. One prefers to play alone on the playground, one doesn't. If they want to talk about pipes and sewers because they're fascinating, we do. Each person gets to talk about their passions. I can tolerate looking a bit unconventional because it's part of unmasking.

I’m watching my 7 y.o.’s swimming lesson and I start to feel a familiar pain. My kid loves this teacher. Looks forward to swimming. But as kid has improved in the pool, I’ve noticed the teacher pushing too hard.

The teacher let go of my kid in the water without warning. Minimized their distress about that. Ignored my kid’s refusal of a task they were scared of.

I can see the problem – this teacher doesn’t understand autistic neurology. They don’t know about apraxia. Apraxia makes it impossible for my kid to rely on their body to move how they want it to. They have learned the moves. Practised them. But all of a sudden, legs might not kick, arms might not pull, nose might not blow bubbles OUT and might instead suck water IN. This is not under my kid’s control. It makes swimming scary.

The lesson ends and we drive home. Me, and both kids. Parked in our garage it’s dim, quiet, the seatbelt pressure is comforting, and no-one needs to make eye contact.

I tell my 7 y.o. “I noticed your swimming lesson was hard today. Your teacher didn’t seem to listen to you, when you said it was scary and you wanted to stop.”

We talk about autism and apraxia. How people need to feel safe to learn. How it’s the teacher’s job to make sure kids feel safe.

“So was it the teacher’s fault?” The 5 y.o. pipes up. With autistic concrete thinking, it makes sense for people to be At Fault or Not At Fault. The in-between is hard to see, but I do my best:

I explain yes, it was the teacher’s fault. They should have stopped when (kid) said it was scary. But I reckon if the teacher knew about autistic brains, they wouldn’t have done the wrong thing. So next time, I will explain autistic brains to the teacher.

7 y.o. chimes in. Laidback. “No. that’s ok mum. I can talk to my teacher.”

I marvel at how easy the kid thinks this will be. I respect their autonomy, and this opportunity. But I don’t seriously think at age 7 my kid will manage it alone. I gently suggest a “plan B” - if the problem isn’t fixed, kid will signal me for help. We agree a signal. Kid role plays what they’ll say to their teacher.

I rehearse my advocacy scripts too. I know I’ll need to step in.

We arrive at the pool. Bathers and goggles. The smell of chlorine. Teachers call the kids to their lessons. My 7 y.o. strides over and launches into discussion. Autistically straight to the point.

“Teacher. Lately you’ve been making me do scary things. So NO MORE scary things. If I say something is scary, you have to stop.”

The kid’s confidence is a beacon.

Teacher listens, frowns a little. Glances a question at me. They see: I’m hearing every word. My silent support.

What follows is a fantastic exchange between my 7 y.o. and their teacher. A needs-respecting plan is agreed. Kid has a fantastic lesson.

We can modify teaching to make it accessible to neurodivergent kids. Often the accommodations are easy – low hanging fruit! A 7 y.o. could tell you how to do it.

At home we celebrate kid’s self-advocacy with praise and congratulations. Kid smiles realising they did something brave without even knowing.

So much of being autistic in a neurotypical world requires bravery, it can be hard to notice.