I had the opportunity to speak, as a public comment, during a meeting of the Autism Society, Florida Chapter. It applies mostly to the National leadership because I think it is past time for some things to change. What I said might not have pleased everyone, and it might have made some angry. But I stand by the words – compliance is not my goal.
It needed to be said though, not only to the Autism Society but to all organizations that say they “advocate” for autism. If an organization wants to help, it should not advocate for things Autistics don’t want (like Applied Behavior Analysis -ABA, for example). Real advocacy only happens when the group that can benefit from the advocacy is part of the conversation. Autism advocacy only happens if Autistics (not one or two token Autistics, but a large group) are deeply involved.
So, this is for all organizations, and its members, who believe we, Autistics, deserve the same rights and respect as anyone else.
Except for Autism Speaks. Autism Speaks is too full of hatred for Autistics to even acknowledge that we have human thoughts and feelings.
Other organizations can still become our allies.
This is what I said:
“I want to make a comment. Are you ready?
First, I think that the Autism Society of America, and all its chapters, need to move away from person first language and start using identity first language.
The idea that person first is the “acceptable” one is not true because most Autistics (independent thinkers) prefer identity first. The person first as used when referring to Autistics is a parent-initiated thing. We deserve to be heard. Actually, our voices should count more.
At minimum, you should use both. Of course, if an Autistic person prefers person first, then that person should be respected. But do not generalize to please non-autistics.
I, and many others, am proud Autistic and Disabled.
I am not “only” Autistic, but I am not “only” a white woman. Yet, nobody says I am a “person with whiteness femaleness”.
Besides, when you need to remind people that I am “a person”, you deny my humanity. Of course I am a person, this is pretty obvious.
Don’t ignore our voices.
Second, stop using, and reject, functioning labels. It is absurd, dismissive and disrespectful. Unless you can define “high” and “low” functioning, and then place each one of us in one little box, convincing us that we belong where you place us, you are simply making our lives much difficult. You should not use terms you can’t define and I dare you to define these.
Third, reject anything ABA. This compliance-training program says we are defective and does not allow Autistics to learn self-determination. Autistics who “succeed” because of ABA are obedient, pleasers, not necessarily independent thinkers.
And no, there is no “good ABA”. There are things every child, not only Autistics, needs to learn. Trying to “fix” what is not broken, trying to make us into your definition of “better”, and forced compliance, are violations of our autonomy, it is not acceptance.
There are better approaches.
Fourth, why haven’t you moved from awareness to acceptance? Haven’t you read or listened to all Autistic voices talking to you?”
After I spoke I was surprised, in a good way, by how some people stood and applauded me. I was not surprised by some pouty faces and some excuses: “my ABA is not forced compliance”.
I say: If it is ABA it is training into compliance.
“Autistic kids need to learn certain things”.
I say: the same things everyone needs to learn. Non-autistics are not subjected to many hours of training to look less who they are.
I will say it again: whatever one does trying to change the essence of who we are, by trying to mold us into ideals of “acceptable”, it is forced compliance.
Waiting for a response from the organizations who read this, and from the ones who heard me.
You make some very good points. Some of your points are examples of why I’m trying to start a new organization, or rather why I’m building the foundation so that a new organization can exist.
Too much of what us parents (I’m the parent of three autistic children) are taught to do and directed to do and all too often are forced to do does nothing to achieve the goal other parents have (or are supposed to have). The job of the parent is to raise the child into an adult. Yet parents of children with autism are led to believe that their children will be “children” forever.
When a child is young, it is important to instill compliance. When the parent screams “No!” it’s important that they child can and does obey, even if they don’t understand why. “No!” don’t touch the hot stove. “No!” don’t run out into the street full of moving cars. “No!” don’t eat that bug. Compliance does have its place.
But as the child grows older, we move past compliance and into understanding. We teach our kids why they shouldn’t touch hot stoves or run out into busy streets or eat random bugs that might be poisonous. We also teach them what to do and how to do it and we empower them to make their own choices.
Eventually, the child is an adult who makes all their own choices.
But as soon as you find out that your child has special needs, the pattern changes on you. Some parents embrace this change. Others don’t. My husband and I had to battle NOT to undergo this change, because there was a person who tried to force us to comply, just as they were trying to force our kids to comply. Some people just don’t get that they do not have a right to that kind of power over others’ lives.
I applaud you as well. Thank you for your voice. Thank you for the best breakdown of advocacy I have seen. ABA is why I stopped being a practitioner and started being a parent.
Great post. I am currently working on a book teaching parents about autistic advocacy based on interviews I conducted with autistics. It is appalling how little parents understand about autism advocacy and how contrary their agendas for their children can be with what their children actually want for themselves.
Amy Sequenzia We love you!!
<3 Thank you for all you do!
i actually don’t think the Autism Society is bad at all.