Many of my adult autistic friends are uncomfortable in the company of the vast majority of parents of autistic children.
That is one of the most disheartening sentences to have to write, but the truth in it is undeniable. And it’s something that we, as parents, have to change and have to change NOW.
My kid, at almost fifteen, is just as close to being 25 as she is to being 5. I cannot stomach the idea that she will feel anything less than welcome, fully included, and empowered by any group of my peers. Right now, that’s just not the case.
In advocacy circles, my autistic friends are constantly told, both implicitly and explicitly, that their voices are only relevant in describing their own experiences. Their advocacy on behalf of their community is routinely dismissed by those who assume they do not or cannot understand the needs of their more ‘severely’ disabled brethren.
But that notion – that their advocacy is limited to themselves and to others who share their own exact profile is not only flawed – it’s dangerous.
It serves as the primary mechanism by which we continuously silence the voices of those for whom we claim to fight. It sets up this bizarre paradigm in which anyone who has the ability to make themselves understood is not disabled enough to qualify as an advocate for those who have not yet found the means to do so. I beg you to really think about that.
What about someone like our dear young friend Rhema? She is one of the most impacted people I know (and I know a LOT of people). But now that she can type, she’s facing a wall of skepticism about whether or not “it’s really her” communicating. I’ve sat next to her on countless occasions while she pecked out words and I will tell you that it is absolutely, positively, 100% HER communicating HER thoughts. But I will also tell you that despite incontrovertible evidence, there are parents and “experts” who have and who will continue to challenge the provenance of her writing, thereby marginalizing and devaluing one of the most important perspectives we have available to us, not to mention Rhema‘s own agency.
And what about an adult who went to college, is an articulate and eloquent speaker, and who *appears*, for all intents and purposes to be nothing like Rhema? What right does she have to claim to be fighting for her needs too?
Come closer, friends, I need you to really hear this ..
She has every right under the sun and just as much, if not more understanding, of what it is we’re really fighting for.
Having had the privilege of getting close to a number of folks who fit that latter description, I will tell you that they often have far, far more in common with our kids than we think. But they also have a lot of years of therapy, experience, practice, learning, human development, support .. things that will make our kids look a whole lot different in twenty years than they do now too. But also? And I really need you to hear this too ..
They hide a lot. They were raised with the belief that looking indistinguishable from their neurotypical peers was the highest achievement possible. They were taught to pass. To stuff it all down. To be someone else in public. And yeah, some of them are able to do that, at least for limited periods of time, where others simply can’t. But the stuff that we see with our kids – the stuff that we think differentiates our lives from theirs – the spinning, the flapping, the meltdowns, the shutdowns, the heartbreaking self injury .. the dysregulation and sensory overloads, the anxiety, the rigidity, and the private challenges that we don’t talk about because they’re private .. well, guess what? These adults experience it too.
Because try as they may to fit into a world that doesn’t fit, time runs out on that limited window of time in a day in which they can keep it all contained.
It’s like social media. We compare our own messy, behind-the-scenes lives to friends’ artfully posed Instagram photos. And while the photos might be real, ten minutes later, I promise you the frames look a whole lot different.
But still we insist that this limited snapshot of autistic adults in our shared spaces provides an accurate – or remotely relevant – comparison to our children’s abilities and that the contrast we think we see justifies shutting them down when they say, “I get it.” It does neither. And it has so stop.
Because to force them to share their most private challenges to prove themselves “disabled enough” to be worthy of being heard is a pretty hideous dynamic for a relationship with people who say they have your best interests at heart.
Most of us, at least the nautistic* and not otherwise disabled among us, discovered this community when we learned about our children’s challenges. Autistic adults have lived their lives in this community.
They have a unique perspective as advocates, the breadth and depth of which many of us can only imagine. They speak from experience, with a long lens spanning entire lifetimes, having seen the effects of various movements, methodologies, and ideologies and they have incredibly valuable insight into what works, what doesn’t, and what may looks like it’s working while causing unintended yet irreparable damage.
The bottom line is that their voices matter. And it’s long past time to stop looking for reasons to dismiss them.
*nautistic is Brooks word for neurotypical. It is pronounced NOT-tistic.
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