As a parent to an autistic kid, I read a lot about different strategies to make the world more accessible to my kid. About different ways of meeting sensory needs, create predictability and giving my kid the best possible opportunity to understand the world. To relieve stress and create recovery time. As much as possible, I read about autistic people’s experiences, needs and ways of meeting those needs, but sometimes I read something from an autism professional who isn’t autistic, or isn’t writing from an autistic point of view. And I hate it.
Not because all of it is totally bad, but because most of the times, the values permeating it are horrible. Besides from not working the way these NT autism professionals think their tools and strategies work, there’s very often an idea that the less autistic the person appear, the more they can claim success. As an autistic person myself, it hurts me badly when I have to be confronted again and again with their notions of being autistic as something bad. No matter how much they claim that they aren’t trying to cure autistic people, the idea that support or help should be something that makes autistic people seem as little autistic as possible is taken so for granted that they don’t need to spell it out. In many cases, they claim the opposite but then when they explain how their strategies and tools help, success is measured in the person appearing less autistic.
Not only is this a waste of my energy because it won’t help my kid, but it’s also a huge problem because it’s affecting my thoughts and feelings about myself. Their often incorrect ideas about autism are hijacking my thoughts and it makes it more difficult for me to understand myself and my kid.
For instance, let’s take this idea that autistic people need a huge amount of external, totally illogically constructed motivation to be able to learn something. Even when I look at tools and strategies that aren’t obviously based on this, I can sense that this notion is somewhere deep beyond what’s being claimed straightforward. No matter how much I know that this isn’t true, I get affected by it. Whenever something is too difficult for me, I start wondering if I’m actually just not motivated enough. I know that this isn’t true but having to see some misunderstandings about autism being reproduced over and over affects me. It hijacks my thoughts.
This is why I think that autism professionals (autistic or not) need to start paying way more attention to what autistic people are trying to communicate, and scrutinize your own values and understandings of autism. It’s not enough to stop doing ABA, in order to create a better world for autistic people autism professionals need to stop reproducing misunderstandings and negative values about autism.