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Treading the Muddy Waters: The Divided Communities of Autism

By Stephanie Allen Crist; originally published on the blog Embracing Chaos.

Marc Sirkin, chief community officer at Autism Speaks, said:

We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.

I reluctantly agree, though I think it’s sad. Once upon a time, it was common belief that people with dark skin are inferior to people with lighter skin. Even the labels we used reflected these beliefs. We called one black, the other white; we associated black with night, evil, and filthiness; and we associated white with day, good, and cleanliness. This belief is no longer considered socially acceptable by the majority of our society. Yet, some people still cling to this belief to varying degrees. Despite the lack of social acceptability, some people experience racism as a common, even daily occurrence.

Someday the presumed inferiority of people with neurological differences will no longer be socially acceptable. Some day saying society should eradicate neurodiversity from the face of the earth will be widely viewed as a call for genocide. And yet, when that day comes, some people will cling to this belief that neurological differences are marks of inferiority, that differences should be cleansed from people like so much filth.

It’s human nature to disagree. It’s human nature to degrade. It’s human nature to let prejudice, assumptions, and ignorance sway our thoughts and emotions. It’s human nature to have to fight for the rights and worth of minority groups. As much as I believe in the potential for individual human beings to be genuinely good, noble people; I do not believe human beings, as a species, will ever get passed these fundamental flaws.

Here and now, the inferiority of people with neurological differences is commonly accepted. After all, these traits are “disorders,” so they are obviously inferior. Not everyone feels this way, of course, but most people need to be awakened to the possibility that the obvious is not the truth before they can make a conscious decision about what they believe. This awakening can and does happen. I’ve seen it in the eyes of people I’ve talked to who have listened and understood. There’s a visible transformation that plays out on their faces as they digest this new point of view. Their faces reflect first confusion, then understanding, and openness to the possibility. Then, their eyes widen with a moment of inspired surprise. They see the faulty assumptions with new eyes and slough them off. It’s a wondrous moment to watch this awakening transpire!

But, I’ve also seen cold, deaden eyes from people who closed their hearts and would not listen. I’ve seen them turn away in disinterest; I’ve felt them turn on me in an all-out attack; and I’ve watched them smirk in derision. Whatever their reasons may be, they are not open to the idea that someone with a label like “autism” or “bi-polar disorder” or “ADD” is equal unto themselves. There’s little we can do for them but keep sharing our message.

To evoke the change that must occur before people with neurological differences are recognized as equals in society we must win the hearts and minds of as many as we can. We must do so, not through coercion, but through conviction. For each person whose heart burns with the cause of the neurodiversity movement there will be a different strategy and a different set of tasks. No way is wrong and I do not presume to dictate anyone else’s approach to sharing this ideal.

My approach is three-fold. First, I want a better world for my children. My children are autistic, and if they face as adults the same world they face as children, they will spend their lives marginalized, ostracized, and victimized by the callous society which repeatedly fails to recognize their humanity. I don’t want that for my children. I recognize that to truly transform this world one of the things I need to do is converse with those autistic adults who are also trying to change the world. These are those who can help me understand my children better and can help shape the messages I need to share to improve the world for my children.

Second, I want to help all the traumatized, victimized parents, and their children, who are reinforcing the world as it is. This goal is much more difficult for me, but it is my conscious choice to pursue it.

Once, a long while back, I came across a story about Alison and Ryan Davies. Ryan Davies was a little boy with autism, much like my own children. His mother, however, was nothing like me. She was traumatized by the experience of raising her autistic son. She was so traumatized that she did something I found unthinkable. She took her son to a bridge, held his hand, and jumped, pulling him down to his death. This was the first story of this nature that I had ever read and it is burned into my memory and my soul. It’s a constant, aching brand on my psyche. It was the first story, but it hasn’t been the last. One thing that makes this story so poignant for me is what came after. Alison Davies’ sister actually defended the mother’s actions, and described this premeditated murder as “an act of love.” Even now those words make me sick to my stomach.

The story broke my heart. More than that, it made me so very angry. Time and again, I would come across of a parent who took their autistic child’s life and the anger would boil inside me. I condemned these parents whole-heartedly. It was so easy to be angry, so easy to condemn them. I couldn’t understand them and I refused to try.

But the turmoil of these emotions got in the way of raising my own children. I had to let that anger go. I still mourn the loss of these precious children, but slowly I have developed a compassion for their parents as well. Being who I am, it is difficult to imagine someone who just didn’t question the diagnoses and prognoses of the medical professionals. It is difficult to imagine the loss, the hopelessness, and the pain of these traumatized parents who couldn’t fight the precepts society that doomed their children. I sought knowledge and I cling to a very peculiar hope because it is an integral part of who I am. Furthermore, I have loved and married a man who is marginalized by society, who is deemed to be of little worth, simply because he’s not normal. I’ve seen how the way he is treated has done so much more harm than his neurological differences. I’ve known people who have been dealt a bad hand – one that, should the precepts of society prevail, would have limited them to menial existences – yet they triumph over extraordinary circumstances. I know in my heart that my children are precious; and I know in my heart that the child and the autism are forever intertwined, but that the challenges posed by autism will only be a fraction of the challenges they face because of how the autism is perceived. For so long, I couldn’t tolerate anyone who didn’t have this understanding. I assumed that they chose to be traumatized, knowing full-well there were viable alternatives. For some that may be true. But for many the ideas society accepts are all they’re really aware of, they cannot imagine another way to perceive their child. Unfortunately, the idea that society accepts is that children with autism are broken and we don’t have any way to fix them. These parents desperately need another message, another voice. They need a voice that helps them break through the trauma. They need a voice that doesn’t victimize them, but empowers them to help their child. My voice will be part of that larger voices that seeks to open their minds to the possibilities, instead of thrusting them down into the depths of despair.

My third purpose is the belief that the best way to change hearts and minds is to bring this message into the mainstream. For many of the people I talk with in my community neurodiversity is a concept with which they are completely unfamiliar. Teachers, therapists, psychologists, and parents find the idea completely foreign, though not always completely unwelcome. Communicating primarily online creates this illusion that the idea of neurodiversity is wide-spread. It certainly has an international following. But that isn’t enough. As wonderful and the Autism Hub and the many bloggers who write about neurodiversity are, you only find them if you know to look and care enough to make the effort. And there are those who are getting this message into the mainstream, but it’s still too few and too far between to have the kind of impact we need to enact the kind of change required.

Bev of Square 8 said:

Unless you are autistic, or your family member is, you probably don’t spend much of your days reading and thinking about what it means. You take the sound bites, read an article or two, watch 60 Minutes or Larry King. Nothing wrong with that, it isn’t your job to figure all this out.

While I certainly understand what she’s saying, I must disagree. There is something wrong with the majority of people remaining oblivious to all the damage being inflicted on neurologically diverse people by the “squeaky wheel” of those who want to eliminate them. There is something wrong with a society that will propagate the views of the powerful, while leaving the weaker minority with few means of communicating with the masses. By allowing it, these everyday people provide their implicit approval. By remaining ignorant of it, they don’t even know they’re doing so. It’s not enough for people who have a connection to neurologically diverse people to care about what happens to them. This issue deserves everyone’s attention, because it affects them whether they know it or not.

The image of puzzle pieces – scattered and awry – is associated with autism. I’ve never understood that. For me, the image I associate with autism, or at least my place in association with autism, is that of a bridge. This is not a bridge to be jumped off of, but a bridge between perceptions. I am the bridge between my family and society. I also want to be one of the bridges between society and neurodiversity. The change must happen. The societies in which neurodiversity is strongest are societies based on freedom. If the majority of the people in these societies truly knew, truly understood what is going on under their noses and being done in their names, they would not tolerate it. I want to be one of the bridges from the understanding they have and to an understanding of the truth behind the sound bites in order to effect the change that we all need so desperately.

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