In the Neurodiversity community, we do take some flak about yelling at parents. We tell them not to do this or not to do that. When they say their lives are hard, we invite them to suck it up. We’re kinda mean that way, I guess.
But there’s a reason behind our “meanness.”
Here, I unpack why parents of Disabled children suck (and also present the alternative: the “Warrior parents” we totally want in our activist movement):
Parents Speak “for” Kids Using the Parents’ Perspective
Imagine this: your eighth grade class is doing an experiment. You aren’t allowed to speak for an entire day, and during that day, you have a guide to help you (By the way, the “blind walk” is a common exercise in schools and it is ableist. DO NOT DO THIS. Not only does it give you no idea about perspectives of actual Blind and Visually Impaired people, it involves a lot of giggling kids having fun at others’ expense. Instead, listen to the lived experiences of Blind people and/or read their work). Unfortunately, your teachers partner you up with someone to speak for you who you have never met before. So all day long, this person gets to guess at what you want. Over time, if you’d continue on in that way, you’d probably do okay, but you’d never be able to get this person to express your sophisticated thoughts. I can see parents objecting: of course I know my child. I’m his parent. But think about this: you gave birth to a tiny human who didn’t speak (and still doesn’t, in some cases). This means that you have only ever communicated over things that he or she has felt worth saying to you, which will necessarily focus on immediate needs. As your child gets older, there will always be this wall between you because his or her thoughts don’t match up with the way you two communicate.
The fact is, though, your child very likely DOES have sophisticated thoughts to express…but he or she can’t do it.
You have two choices: 1) you can talk FOR your child or 2) you can find a way to AMPLIFY his or her voice.
What’s the difference?
A parent who amplifies works tirelessly to get some form of assistive technology to the child so that he or she can express those thoughts. As the child grows, more complex words will be available. THIS is the parent we want in Camp Neurodiversity: a parent who doesn’t merely talk FOR the child, but one who helps his or her child find a mechanism by which to make his or her complex thoughts and feelings known and amplifies that voice so that others can hear, too.
It’s a subtle difference, but an important one.
Parents Who Cut Out the Lived Lives of Other Autistics
Back in the 1980’s, two popular shows: Diff’rent Strokes and Webster explored cross-race adoption. Every so often, race would actually come up on these comedy shows, and sometimes some well-meaning person would try to take the kids away so they could live with Black families. The tension was real throughout the series. The idea of course, in a fable spun by white people, was that we lived in a cross-race society now, and so the Blackness of the children didn’t matter because their white adoptive parents loved them. This is the white version of the story. American Indians have seen this same story play out for years and years. As a result, they got an important act passed: the American Indian Child Welfare Act, which means that if a child is culturally native, his or her tribe will get say in the placement of the child. This law was essential because Indian populations are dying out and in order to keep the population alive, they need all of their children, and they need the opportunity to raise them as tribal members, not as “melted” white people.
Autistics don’t want to take your child away from you. But we have the same concerns as those “mean” people did whenever they questioned why a white person was raising a Black child: will the parent really be able to unpack the experience of being Black in America if this is not a personal struggle that he or she faces? Many Autistics are raised by Autistics, and if everyone knows that he or she is Autistic, this can often take care of that problem, but some Autistics are raised by neurotypicals. These neurotypicals have no idea how to be Autistic in America (or wherever). How could they? And much like Mr. Drummond in Diff’rent Strokes, they don’t really realize that they’re white (neurotypical) and that that has privilege in society.
So when Autistics speak out against things like ABA and other therapies, we’re not trying to tell you how to raise your child; we’re offering you information so that you can understand what it is to be Autistic in America (or wherever) so that you can use that information to help your child get on better in life than any of us did. Almost all of us adult Autistics were raised as if we were neurotypical. We went through the same experience your child may be going through right now. We now have the age and wisdom (and awareness of our Autism) to help you to not harm your kids as we were harmed.
Why not listen to that experience?
See, the alternative voice, often Autism Speaks, tells a myth: the myth is that your child is not culturally Autistic; he or she is Disabled because he or she is broken (not because society is broken). We need to fix your child. This is a compelling myth because it is EASIER to fix a broken arm than it is to deal with the reality of being a silenced voice in our culture.
To walk this walk, I think, it is easier for Parents of Color to get it: they have to fight based on race and ALSO fight based on Disability.
But the white parents often don’t know they’re privileged as being white and privileged as being neurotypical. No one wants to hear that, quite frankly.
But it is what it is: welcome to society! We privilege some over others. And if you’re white AND neurotypical, you’ve got a heckuva lot of power that you did nothing to earn.
So this is why, if anyone knows how hard it is to be Autistic, it’s Adult Autistics. We learned a lot of stuff the hard way. We don’t want your child to have to do the same.
We want parents in our movement who listen to what we have to say instead of telling us we’re “too functional” to help. We have Neurodiversity advocates who speak using a voice and those use assistive technologies. We have Neurodiversity advocates who have a whole litany of co-morbid conditions and have learned to manage them. Parents who listen we would LOVE to have fighting with us because we can learn from you, too.
See, we have no idea how it is to be neurotypical in society. We guess at it, and many of us have learned to “pass,” but we don’t know what it’s like to BE you. Knowing that can help us to not come off so abrasively in the future. For now, though, well, nothing ever got moving forward when people were “nice” and followed the social order.
But someday, we want to BE part of the social order, not because we’re “cured,” but because society accommodates us as being “normal.” When that happens, we’ll want to know how to make nice.
Parents, we want you in the movement, but we need you to listen and learn and amplify, not to speak for us.