Point 8 from Sometimes my Heart Hurts for your Child
Over on Speaking of Autism… Quincy has written a heartfelt piece aimed primarily at the autism community, but it is also relevant to the wider neurotypical (non-autistic) community.
The article is quite long (approximately 9 minutes reading time), and each of the points Quincy makes shows how much the autism community fails to understand the autistic community. For this reason, I’m re-posting each point as a separate article here, because each point is important.
Before I start, I feel I need to explain the difference between the “autism community” and the “autistic community” The autistic community consists of people who are autistic, whereas the autism community consists mainly people who are directly or indirectly involved with autistic people (typically family members and those involved in the “treatment” of autism), but are not typically autistic themselves.
Each of Quincy’s points illustrates just how far the autism community and the wider community has to go to meet the autistic community even part way.
You describe your child as a mystery and long to know what their world is like, when I know exactly what their world is like.
So many describe autistic people as mysteries. Parents say they long to know what’s going on inside their autistic child’s head, that they could understand.
Well, I have good news: there is a way you can see your child’s perspective! You ask other autistic people! It seems so obvious, yet so many neglect this. Despite the fact that the autism spectrum is broad, I am convinced that there really isn’t a fundamental difference between different autistic people.
I can relate to every autistic person I have ever met on an autistic level, even the ones who superficially “aren’t like” me. I find my autistic experiences bring the same as their autistic experiences, and I can use the fact that I’m also autistic to help you understand your child. Now, many parents do listen to other autistics, and to all those that do a sincere thank you.
Yet so many parents don’t want to listen to autistic people. They may read something written by an autistic, momentarily think “wow, that was profound, I’m glad I read that,” and then move on prioritizing non-autistic voices on autism over those who literally live autism. Or, at worst, they get belligerent. “Not like my child” is the commonly repeated phrase. But the thing is, we are like your child.
That doesn’t mean everyone is a carbon copy clone of your kid, or that we have all the same struggles, or all the same co-occurring conditions, or are equally as disabled. But we are both autistic. And like I said, there’s not a fundamental difference between other people’s autism.
We do understand your child from firsthand experience. Plus, many of us literally were just like your child. The non-speaking kid who has a meltdown every time he hears a hairdryer and needs prompting and constant aid to do the basic things? For many of us autistic adults, we were exactly like that at that age. We lived exactly that. So give us the benefit of the doubt and let other autistic people help you understand your autistic child.