For my friends who hear the word “autistic” and cower in terror, who are committed to finding cures and advocating prevention (or who perhaps aren’t so invested but still assume that to be the only obvious route) …
I am writing this because I found myself in two situations this week where someone who thought they were being helpful or encouraging said terrible things about autistic folks. In both instances I froze, unable to articulate the truth of what I know—or at the very least defend my autistic friends who have been marginalized and abused for their whole lives. Thankfully in both cases there were friends nearby who jumped in with words of truth. That won’t always be the case though. I need to get better at this.
I am writing this, in part, to equip myself with a few words to say out loud when I’m blindsided by someone else’s powerful fear. I usually write more clearly than I speak, so my hope is that the former might give legs to the latter.
I am writing this not to shame, but to inform. We don’t know what we don’t know—and there is so much on this topic that most of the world is still simply blind to. So. I’m offering what I know. Which isn’t a great deal, and is relatively newly acquired. But. Here is a start.
Autism is not a disease. It is not life-threatening; rather, it is a particular way of moving through life. It’s a genetic variation, same as that which determines our ethnicity or sexual orientation. Nothing causes autism—not vaccinations, not lead poisoning, not anything done in pregnancy. It is not a disease—nor is it even a disorder. The reason it’s been labeled and treated as such is because our world isn’t set up to accept, accommodate or even recognize the differences embodied and displayed by someone with an autistic brain.
If you find speaking difficult, if eye contact is overwhelmingly intense, if you have a hard time coping with the various sensory assaults of our world, if you need more time or a different medium to express what’s in your heart, if moving around in certain ways in helps you feel safe and comfortable, others might become uneasy and start looking for a way to make it stop. Rather than face their own discomfort, they label you sick so that there’s something to fight, to cure, to prevent. To fix.
For this reason, autism (and other neurological variations like bipolar, ADHD, etc.) ends up being categorized as a disorder, a disease. Something that is wrong. (Even the term ‘autism’ infers a condition. People are autistic; they don’t have autism.) Our culture is all about fitting in, succeeding, getting ahead: ‘values’ we have always held in vastly higher regard than seeing and accepting one another for who we are. The labels we apply and ‘cures’ we seek for these folks ask them to contort into shapes that are painful and unnatural so that they appear more in line with the prevailing way of being—meanwhile abandoning everything that feels safe and natural to them. ‘Treatments’ like this are actually abuse, actually torture. And they’ve been going on for years. Still are.
Terms like ‘spectrum’ and ‘aspergers / aspie’ emerged as ways to sidestep the culturally terrifying label of full-on autistic. Failing that, sometimes the label is tempered with the qualifier ‘high functioning.’ Friends: to call an autistic person high functioning is a profound insult (akin to, say, a white person calling a black person ‘articulate’). Whoever you’re saying this about probably looks and talks and acts more or less the way you do and may appear to have less difficulty navigating the world as it is [unfairly] set up. Labels like this dismiss the person’s inner world and experience. They invalidate differences that are no less real because they’re less evident. Most of the autistic folks I know prefer to be referred to as autistic. We’re doing them no favors by inventing terms that make us feel better.
It’s taken me a long time to understand all of this and I know I’m only at the tip of the iceberg. It is a vast conversation with subtleties and sub-topics I haven’t touched on. It’s an entire paradigm shift, in fact, and the vast majority of the world hasn’t yet shifted—or even recognized the need to. My intention here is to lay out the broad strokes to help me (and others) simply begin the conversation—which, I have disturbingly and undeniably realized, I still have very little idea how to do.
Nor am I equipped to speak to every nuance or question on this topic. Luckily there are experts. One of them is my dear friend and teacher Nick Walker, who opened my eyes to all of this to begin with. His website Neurocosmopolitanism is a treasure trove of beautifully written material by an autistic person, plus links to trusted resources for still more.
Apart from this, most of my own education has come from spending time with my autistic friends and their allies, learning from them, and working through my own confusion, misinformation, and fear (after acknowledging it in the first place). It’s not easy to wake up from what we’ve been taught our whole lives, but it is necessary for our evolution, both individual and collective. Like any endemic area of social blindness where we’re called to wake up to our own privilege, we need to stay curious rather than get defensive.
Again, this isn’t meant as an argument so much as an outlay of basic information. Originally I’d asked that only my autistic and neurodivergent friends and their allies respond and let me know if any piece of this is obtuse or off the mark. It’s since been thumbsed-up by enough people I respect in that community that I invite questions from anyone wanting to join me in being a better ally.
September 25, 2017 at 4:16 am
My 6 beloved (and awesome!) 6-year-old son is autistic. I’m struggling to figure out how much I need to teach him to get along in a primarily neurotypical world, and how much I need to affirm him exactly as the awesome person he is! He needs to know he is awesome, and at the same time, he needs to know how to pay attention to what makes others comfortable. I’ve had to go through this with my severe ADHD-the recognition that I need to curb some of my natural tendencies in order to ultimately get what I want. I am homeschooling my son and try to encourage his interests while also trying to teach him how to get along and to be able to listen to directions. Any advice or input?
September 25, 2017 at 4:44 pm
Hi Zoe, Thanks for reaching out, and for being so loving and respectful of your son. This is where I defer to the experts. In addition to the resources on Nick’s site this video might be helpful: https://www.youtube.com/watch?v=N6GnPgro5BY
I wish you the best!
September 25, 2017 at 11:38 pm
Thank you for this.