In formal logic, a contradiction is the signal of defeat, but in the evolution of real knowledge it marks the first step in progress toward a victory.
~ Alfred North Whitehead
I’ve been struggling with this post. Wait, I take that back. I’ve been struggling with the ideas that I am going to attempt to wrangle into this post.
If you’ve been around here for a while, you’ve undoubtedly heard me talk about how my perspective on autism, along with my perspective on humanity and dignity and, well, just about everything else, has evolved pretty dramatically over the course of the last seven years. It’s been quite the journey. At a couple of stops along the way, I was under the naive impression that I’d reached my destination. As it turns out, there was no — is no — destination. Just a long and extremely windy path toward better understanding.
I consider myself an accidental activist. The first time that I was refered to as an autism advocate, I rebuffed it. I’d never really thought about slapping a label on what I was, or what I did. As time went by though, and my daughter and I began to find our voices together, I became more comfortable with the title. After all, when you’re standing behind a podium making a speech, it becomes pretty difficult to avoid calling yourself, well, something.
When I first spoke, I believed that I was speaking for those who couldn’t. My mission, as I saw it, was to give a voice to the voiceless. And I thought that the way to do that was to talk about what I believed that they wanted and needed. My intentions were good. I wanted to help people like my daughter who, at that time, had no real functional way of communicating with the world.
Over time, I began to see the folly of my thinking. Slowly but surely, I started to understand that my job was not to speak for my daughter, or anyone else for that matter, but to help build a platform upon which she – and they – could speak for themselves.
As I found my footing, I turned increasingly to autistic friends and self-advocates to better understand their experience. Their lives were different from Brooke’s, of course, often, and especially in the case of the advocates, quite dramatically so, but there were similarities. Enough to matter. Enough to make me stop in my tracks and question each and every assumption I’d ever made. Enough to take my advocacy in a completely different direction.
The differences were enough to matter too, but I wasn’t really ready to acknowledge that. There was a place to turn. And that was enough.
In 2009, I wrote about my nascent understanding of the school of thought known as neurodiversity. Clearly, I was beginning to feel my pendulum swing in that direction, but it was important to me to clearly state that my process was mine – that I could speak only for myself. This is what I wrote.
From Middle Ground, September, 2009 ..
Over the past three years, my view of autism has evolved, and continues to change with each passing day. In that time I have come to see that there are as many approaches to autism as there are people on the spectrum. That there as many right answers as there are questions. That there is no one size fits all solution to any of it.
Early on, I was horrified and angered by what I read of the neuro-diversity movement. I simply could not embrace the idea that something that in so many cases was so debilitating should be celebrated. I could not look at my friends who had never heard their children’s voices – who were trying so hard to contain the smearing of feces on walls, whose children were biting and hitting themselves, hurling themselves on the ground, running headlong into traffic, struggling through every aspect of their day – and tell them that those ‘differences’ should be celebrated. I saw only the extremes, and the need for immediate action.
Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it, but I don’t think so.
I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that – but challenges and all, autism is part of who she is.
But I don’t claim to speak for anyone else. I stand in a unique place with a unique child, just like the millions of other unique parents with one of a kind children. I certainly don’t claim that no one should seek an all out cure RIGHT THIS SECOND. Of course they should. And I will stand beside them as they do. I can’t make that decision for anyone else. Hell, I’m admitting that I don’t even feel like I can make it for my own kid.
In August of 2012, I looked harder at some of the inherent contradictions that swirled around my middle ground. As I churned my way through them, I rationalized troublesome feelings while cautioning against their unfiltered expression. ..
From Rallying Cry – August, 2012
I’ve heard it said that you can’t hate autism and love a person with autism at the same time. I don’t think that’s true. I think you can abhor the thing that makes your child’s life hard. I think you can despise the challenges that he is forced to face. I think you can desperately wish that she didn’t have to struggle with the things that come so naturally to others. I think you can love your child with the ferocity and tenderness that can only coexist in the heart of a parent, while simultaneously hating the thing that denies him an effective method of communicating his most basic wants and needs.
But, I worry – really worry – about the consequences of that anger – particularly when it’s expressed in front of our kids.
And then something began to change. My belief system radicalized. I found myself moving toward a land of absolutes. A land dominated by Nevers –
Never demonize autism – Never separate it from the autistic person – Never focus on the challenges – Never belabor the negatives – Never conflate co-morbid conditions with autism itself – and Never, EVER use the word cure.
A land that, if I’m being really honest with myself, is a lot easier to inhabit with a child who, while challenged, can now, for the most part, communicate her needs.
This past March, I wrote the following.
From Hate, March, 2013
No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them or in front of them) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.
It was tough post. A tough one to write and a tough one to live through. I stand by it. I stand by the fact that the way that we talk about autism matters. I stand by my belief that demonizing autism is a dangerous, if not fatal game.
But, to me, that post (when read in its entirety) is representative of a step too far. Not because it’s inaccurate. I don’t think that it is. But because it fails to acknowledge that there is more to the story.
The flip side of the demonization of autism is broad-stroke glamorization. Or, if you prefer, glorification. At the very least, it’s sanitization.
And while I’ve talked an awful lot here lately about the perils of the former, I’ve become increasingly uncomfortable addressing the latter. And most recently, that discomfort has begun to feel more like cowardice.
They are wonderful. I particularly love the one featuring Amy Sequenzia, whom I greatly admire. Together, they tell an important part of the autism story. But, like my post above, they don’t tell it all.
In the second of the two spots, Katie Miller, an autistic woman who sits on ASAN’s board says,
I’m autistic. I’m not a tragic figure. I’m not broken. I work. I’m happy. I love my family. I’m an artist. I grew up. I like most people! But… some people, I dislike. Especially people who say they speak for me. Because they don’t. I can speak for myself. So let’s talk. We may even become friends.
Clearly she can speak for herself. And she does so beautifully. And it’s so, so important that we, as parents and as a society, recognize, acknowledge, respect and support her ability to do so.
But while Katie and many, if not most, autistics can speak for themselves (understanding that I’m using the word ‘speaking’ as an umbrella term for communicating in whatever capacity they are able), asserting or implying without qualification that all autistic people can “speak” for themselves is as dangerously misleading as asserting or implying that they can’t.
The autistic people in the videos, along with all of those whom they represent, should, without question, be the ones leading the conversation about their own fate.
However, it’s critical to also recognize, acknowledge and respect the fact that not everyone currently has the tools to be able to communicate the way that these folks do. A person without functional communication, is, by definition, not able to participate in the conversation or even to express whether or not they’d like to.
Ed note: please, please don’t misunderstand me. I am not saying that those who can’t currently communicate lack the capacity to do so. But there are an awful lot of people out there who have yet to find a method of communication, facilitated or otherwise, that is accessible to them. Meaning that in this moment, even if their interests are theoretically represented, they are excluded from the conversation.
Much of the debate around communication in the autism world revolves around shifting responsibility, or at the very least more equitably sharing it between the expressor and the receptor of ideas. I don’t disagree that we, as a society at large but even more saliently as people who love those with communication challenges, have a responsibility to do the work that it takes to decipher their language, whatever it may be, just as much, if not more, than they do to express themselves in ours. But sadly, it’s not always possible, no matter how hard we try.
I have very close friends whose children do not have functional language of any kind. No matter how much they adore their children (and, by God, they do), no matter how much they fundamentally respect them (and, believe me when I tell you, they do), no matter how desperately they want to alleviate their children’s frustration by understanding what it is that they are trying to communicate (and, more than anything else in the world, they do), they haven’t yet found the magic bullet.
These friends have tried, and continue to try, offering every imaginable method of support and accommodation to their children. They aren’t trying to “fix” them. They’re trying to enable them to be understood.
They have, in most cases, quite literally dedicated their lives to becoming students of their own children, versed in every behavior that might be a clue to what it is that they are trying to convey. And yet, their children’s inner lives – their needs, their wants, their preferences, their pain, their joy, remain mysteries.
We’re not talking about parents who want these things for themselves. They can’t be dismissed with a ‘You just need to let go of your expectations,’ or, a ‘This isn’t about you.’ It’s not. It’s about trying desperately to understand what they can do to make their children feel safe, feel comfortable, be happy. What they can do to understand and alleviate the pain and frustration that leads them to unimaginable self harm. What they can do to respect them.
Margret doesn’t know it, but it was her words that cajoled me to acknowledge what I was avoiding. To see it. To say it out loud.
I still hear the pain in her voice when she talked about how much she’d gotten wrong. About how far off her assumptions had been about her son’s favorite color, his favorite food. How when he could finally tell her, she felt she’d been betraying him.
“These are human beings that we’re talking about,” she had said, her voice trembling with urgency. “Human beings with their own dreams and desires, who deserve to be able to communicate them, and to learn, to participate in and to contribute to society not just despite but through their differences. They are different,” she said. “And that’s what’s beautiful.”
Many self-advocates take issue with the ubiquitous puzzle pieces that are used as a symbol of the struggle to understand autism. “I am not a puzzle,” they say. And no, they certainly are not. They are human beings. Bright, fabulous, capable human beings who have the ability to say or type or letter board or somehow use some sort of technology to communicate that thought. No human being is a puzzle. But I think we can argue that the symbol of the missing piece of the puzzle is apt as a symbol, not of the people themselves, but instead of the key to communication for which so many still search.
To be clear, this is not an about-face. I still believe that no one should ever speak for anyone else. But it is a shift. My view of my role as an advocate is changing yet again. My job, as I see it now, is to ensure that those who can speak for themselves are able to do so. That when they do, their voices are heard and respected and that no decisions are made about them without them – ever.
But there’s more to it. Because it’s also my job to ensure that the world knows about those who can’t yet speak for themselves — not to make assumptions about what they want to say, but to help them to find a way to tell us what they want us to know. Supporting those who can speak for themselves does not negate our responsibility to also speak up for the rights and needs of those who can not yet be part of the conversation.
I wrote the following after returning from a White House forum on autism in April of 2011. There, I met (and was immediately in awe of) an autistic young woman named Katie. Yes, the very same Katie Miller in the PSA. Life is funny like that, isn’t it? Taking us on a journey of a thousand miles, only to find ourselves where we started.
So here I am. Farther along and yet, back to familiar territory. It seems that no matter how far I stray, I eventually come back to this, my colorful patchwork of belief and methodology here on the middle ground.
From The White House: Part Five – A Spectrum of Words, May, 2011
As Katie spoke, my heart ached for the adolescent that my child will soon become. For the teenager who will struggle with her differences. For the woman into which she will someday blossom. How will she put all of this together? How will she process these words? How will hearing that this fundamental part of her being is ‘a crippling disease’ affect who she will become and how she will feel – not just about her autism, but about herself as a human being?
But then what about Idil’s son? What about the eight year-old Somali-American boy, who like so many of his peers has no words? How does Katie’s No Pity campaign affect HIM?
What about all of the kids who have no voice? The ones who have no viable means to communicate their most basic needs to the world around them? Who live in a state of constant frustration? What about those with no sense of danger? Those whose constant melt-downs become unmanageable and unsafe? What about those whose self-injurious behaviors become so severe as to cause permanent damage to their homes, their bodies, their brains? What about those who don’t sleep? Whose diet is limited to the three things they can tolerate? What about those who paint the walls with their own feces well into their teens? What about those who run? Who drown in nearby ponds because no one could find the child who couldn’t respond to his name? What about those who are abused by people who know they can never report their crimes?
How does the public discourse affect THEM when it turns to talk about the gifts of autism? About the happy rainbow of neurological differences? How does it affect their parents’ desperate quest for help and resources and answers when the public is being told that autism is something to be celebrated? When they live a life in which the disability looms so large as to obliterate the hope of finding something – anything – to celebrate in their autism? What does No Pity mean then?
Above all others, this has been the topic that has haunted me since my time at the White House. I’ve been turning it over again and again, worrying it between my fingers, slowly pulling its threads to see how they are woven together, to see where they come apart.
Autism is one word, but there is no one autism.
The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.
I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.
Today, I’d change one word.
We can’t speak FOR anyone. We can only support those who speak for themselves as we concurrently do our damnedest to ensure that there’s no one left who can’t.