When I learned my first son had autism I also learned the recommended “solution” to this “problem” was to institutionalize him. Willy displayed most of the symptoms and traits of classic autism. He’d experienced a serious, obvious regression. He was very unhappy, confused, and frustrated; he threw tantrums for no apparent reason. Alex was two. He had no words and didn’t want to play with or even acknowledge the existence of other children. The doctors suggested that Alex’s behavior was in response to Willy’s behavior. The doctors told us many things. What they didn’t tell us was how we could help our children.
I never considered the possibility of consigning my son to an institution. Children, no matter how challenged or challenging, are not disposable. I was full of feelings that I could not put into words. The closest I could come was: “You can’t have my son!” Later, those words developed into: “My children aren’t broken, don’t try to fix them.” On the Internet, I began to hear “whispers” of another approach. Apparently, there was another way to look at these “problems.” These “whispers” came from people who did not support the idea of neurodiversity and did not state the concept itself. These people, when given the opportunity, told me my feelings were wrong and I was harming my child by not trying every treatment available, or at least the treatment they supported as the “miracle cure.”
I was a political blogger at that time, devoted to the anti-incumbent sentiment. In short, I was already something of a rebel – ready and willing to challenge the status quo. I was quirky, neurotic, and intelligent. I struggled with social relationships and face-to-face meetings; and I already knew I had traits occupational therapists described as Sensory Integration Disorder. I already knew that the best thing for me was to learn how to cope and for others to let me just be myself. Why, oh why, could my boys not get the same respect I wanted for myself!?!
Sure, I was teased mercilessly as a child. Sure, there were lots and lots of people who tried to marginalize me, and some even succeeded. But it’s my head. It’s my mind. Why should anyone get to mess with that? My husband, too, is neurologically different. With bi-polar disorder, he’s faced a lot of outward pressure to conform to something he is not; and all that pressure seems to do is to make it more and more difficult for him to function. Why should anyone get to change him? Why can’t they just help him? And, now, our children, who are so different they need the label “autism” to make them understandable – a label full of fear and shame and voices calling for their imprisonment. Why should anyone get to mess with my kids’ minds? Why should anyone get to say they are anything less than children?
All these feelings were denied, put down, and explained away. I was wrong. I was simply wrong. The psychologists were right. I was wrong, and if I were fixed I would know I was wrong. If you’ve read this far, then I suspect you know how that feels. It’s not good. What was worse for me was how my words were twisted and distorted from what I meant. I ask for help and people talk cure. Words are my tools, as a writer, they’re my strength. But all my words were being shot back at me, deformed and malign.
In the blogging venue, I stumbled on Estee’s The Joy of Adam (the old one) and somehow I got to Zilari’s Processing in Parts (the blog is now gone and I miss her). There my feelings were validated. Even when we didn’t agree, they didn’t say I was wrong for feeling the way I did. And, they gave me a word: neurodiversity. I love words. I collect words. I understand words, with all their limitations and capacity for misstatement, I understand them. That word was quite possibly the greatest gift any “community” has ever given me. I could take all the pain, all the rejection, all the hurtful things, and I could dump them into that word. And I did. Suddenly, I was talking to people who didn’t shoot back cure when I said help, and it felt wonderful.
But, neurodiversity is more than that. Neurodiversity isn’t for any one type or group. Neurodiversity is for everyone. Neurodiversity is for Willy who is doing so well by societies standards despite with his autism. Neurodiversity is for Alex who still struggles so very much. Neurodiversity is for Ben who is his own little man. Neurodiversity is for Mark, who needs acceptance and accommodation because society sees him as a failure, and so he sees himself. Neurodiversity is for me, though my differences aren’t “disabling,” I’m still too different to succeed without the acknowledgement that being different is okay. And neurodiversity is for my neurotypical step-son, who has unique learning needs of his own, though he can get by in the status-quo society we live in.
To me, neurodiversity is about questioning what we know and what we think we know about how people think. It’s about discarding prejudices and assumptions about the existence of a “proper” or “appropriate” way to think. It’s about questioning the use of “normal” or “abnormal” to describe anyone’s thinking. To me, neurodiversity is about recognizing and appreciating that everyone has a “different” mind, one that is unique to them, and that nobody should be marginalized, disenfranchised, or violated because their mind doesn’t meet somebody else’s standards or expectations.
Freedom of thought is a fundamental right that nobody has the authority to take away. We can regulate and legislate against people’s actions. We can regulate and legislate against people’s words. We cannot regulate or legislate against people’s thoughts. Thoughts are our own. You don’t know someone else’s thoughts. You do not understand someone else’s mind. You can also perceive what goes on in someone else’s mind through their behavior. And your observation depends on what the other person communicates and what filters you put on that communication.
To deem someone’s thoughts or feelings as right or wrong is the ultimate act of hubris. To invade someone’s thoughts or feelings is the ultimate form of rape. To re-write someone’s thoughts or feelings to suit your own purposes is the ultimate form of murder.
Behaviors and communications are regulated and society chooses which to legislate against. We form rules, both legal and social, to shape what we consider appropriate. This is not going to change. What we can change is the limits and assumptions we place on those behaviors and communications. Being different and expressing oneself differently shouldn’t be against the rules.
Self-expression is a fundamental right secondary only to freedom of thought. There is one primary reason I know of to regulate or legislate against self-expression and that is immediate or imminent harm. The proverbial “fire” in the crowded building. The cliché “I’m going to kill you.” A picture of someone with a bullet through their head left in someone’s mailbox. A picture of a naked child in a suggestive position. These are threatening, harmful forms of self-expression. They either cause harm or suggest harm will be caused. A secondary reason to regulate or legislate against self-expression is those messages that manipulate for the purpose of or with the result of doing harm. Pornography, false advertising, perjury, and defamation fall under this category.
Silencing the dissenting voice because it doesn’t fit with others’ expectations should not ever be regulated or legislated against – not legally and not socially. Nobody should dictate how someone must communicate. Nobody should dictate what someone should communicate on their own behalf. Nobody should dictate when someone can communicate. Nobody should dictate why someone should communicate. Nobody should dictate if someone should be allowed to communicate. Anybody who does these things on behalf of neurodiversity, in my opinion, is distorting, deforming, and maligning the meaning of the word.
Neurodiversity is about recognizing and celebrating the individual in whatever shape, form, color, creed, brain, or label they come in. Anything less is not “diversity.” It’s certainly not neurodiversity.
***This post is inspired by the conversations taking place on The Standard Review, but the thoughts are my own. I do not assume to fully understand or in any way express the thoughts, values, or beliefs Ed has expressed. But I certainly do respect and appreciate them.***