For some, neurodiversity is as important an issue as racial or gender equality.
I touch the waxy surface of the school photograph. Alex looks alert and attentive. He's smiling and still. I don't like it. This picture is a lie. They say you can't tell an autistic child by looking at him. With a picture like this, they're right. Most pictures of Alex don't lie. He doesn't look at the camera. There's often a blur, because he's jumping, wiggling, or flicking his hands. I love this truth. Alex is an adorable, loving, bright, and exuberant child. He's also autistic, some would say severely autistic or even mentally retarded. This is the truth I hate. I hate how people dismiss Alex because he's different. If it was only Alex, who faces many challenging special needs, I might feel differently. I might understand the cruelty and inhumanity that gave birth to the neurodiversity movement. But I have a husband with bipolar disorder and two other sons with autism. They are all mistreated, disrespected, and dismissed, even when they function well in society. I might feel different if it was just Alex, but I doubt it. No matter how different, Alex is a good boy and deserves to be treated like a human being with all the rights, dignities, and freedoms his peers enjoy. Instead society says he's broken and should either be fixed or kept out of sight.
Raising three children with autism isn't easy. My children's differences are real and stressful, but they are only part of our story. When I tell people my children are autistic, their words drip with honeyed sympathy. It's clear to them that I've lost something precious--the chance to raise normal children. They don't know the joy my children create in my life. They can't imagine it. They assume autism is the problem. They don't know about the stigma and discrimination that disturbs our peace. As real as their pity is, they don't know that the most difficult thing about raising an autistic child is not the child and it's not the autism. The most difficult thing is the prejudice we face every day.
When my first son was diagnosed with autism seven years ago, the doctor strongly recommended we institutionalize him. Keeping him, we were told, would rob his siblings of normal lives. We refused. Had my son been diagnosed 10 or 20 years earlier, the pressure to institutionalize him--not only for our sake, but also for the good of society--would have been crushing. Now, seven years later, I'm told institutionalizing autistic children is no longer permissible in Wisconsin. Researchers have demonstrated how appropriate educational services can give individuals with autism the opportunity to live productive lives by fostering social and communication skills neurotypical individuals often take for granted. In some areas of the world, including Canada, families still face considerable pressure to imprison their children in institutions. Societies continue to sacrifice the potential and worth of their autistic members out of fear, misunderstanding, and prejudice.
This is where neurodiversity comes in. Neurodiversity references the natural differences in neurological development that we can observe throughout humanity. In that sense, evidence of neurodiversity is all around you. Like the beautiful snowflakes that fall from the sky, every human being is unique. Even genetically identical twins grow up to be unique people with their own thought processes, brain chemistry, tastes, feelings, preferences, and experiences. Neurodiversity also references the belief that atypical neurological development is a normal human difference deserving of the same respect, consideration, accommodation, and dignity of all intrinsic human differences. Like women's lib or the civil rights movement, the neurodiversity movement seeks the freedom for people to be who they are without discrimination. This movement is about the right to freedom of mind. Nobody should be forced into neurological "normalcy" through the use of drugs, cures, or rehabilitation.
The coining of the term neurodiversity is attributed to Judy Singer of Australia in 1998. However, it is apparent that the term was in response to a social movement that had already taken hold in the autism community. The movement has spread across international boundaries through the formation of organized, online and off-line communities that have both autistic and non-autistic members. Advocates like Estee Klar (founder of The Autism Acceptance Project in Canada) and Ari Ne'e-man (founder of the Autistic Self-Advocacy Network in the United States) are gaining media attention and an international following. Autistics and other neurodiversity supporters are connecting through the Autism Hub and other community sites in order to affect change in how societies interact with neurologically diverse people. Neurodiversity adherents do not advocate strictly for autistics. They promote the interests of individuals with attention deficit disorder, bipolar disorder, and other neurological differences that often lead to medications or treatments that seek to "normalize" people marginalized by society.
The issues of acceptance and accommodation are controversial. There are parents of children who are significantly challenged by the symptoms of autism who demand a cure. Medical practitioners and researchers benefit professionally from trying to meet these demands. Some go so far as to call people with autism "soulless" to further their own agendas. There even are some individuals with autism who crave normality so much that they too promote the search for a cure. As a result of the controversy, neurodiversity supporters are often sidelined and dismissed by governments and organizations that control funds for research and services. Money is poured into research regarding the genes that cause autism and possible cures, instead of ways to help autistics and non-autistics interact in a productive, effective, and mutually beneficial manner.
Change occurs slowly. Some people feel threatened, not only by others' neurological differences, but also by change itself. The neurodiversity movement seeks to shape this change to improve the lives of people across the neurological spectrum, if in no other way than by enforcing everyone's right to be treated as human beings instead of sub-human specimens without inherent value that need to be cured before they can be accepted by society.
But I want more than that. I want to know my grandchildren will not face the stigma my family has faced. I want to know my grandchildren will not be shipped off to another school so they can be placed in a segregated classroom. I want to know that nobody will tell my sons their children are too needy to be in the same family. I want to know that nobody will tell my sons their children would be better off imprisoned in an institution than living with those who love them. I want to know that my grandchildren will not be ostracized in public places because they do not behave in a neurotypical manner. I want to know that my sons will never be stunned by a Taser, because law enforcement officers perceive them as a threat just because they're different. I want to know that my grandchildren will have access to necessary accommodations, not false cures. I want to know that someday all children will sit in a classroom and learn about the heroes across the neurological spectrum that made all this possible--heroes like Judy Singer, Estee Klar, and Ari Ne'e-man. I want to know there will come a time when we will mourn the many people with neurological differences who have been murdered or abused because they were different. This is the future I envision.
I close my eyes, touching the glossy photograph, and I imagine Alex's future son. He will be autistic. He might not talk, but he'll chirp and sing his own happy songs just like his father. He won't like bright lights, loud sounds, haircuts, or pudding. You won't see him sitting still unless he has a crayon in his hand. His favourite part of the movie will be watching the credits. He will write the names of his favourite characters in big, lopsided letters that scrunch up at the end of the page and bleed into the next line. He will go to school with his peers. Nobody will ever tell him he's retarded. Even if he can't speak, he will get a real education. He won't be taught the alphabet and colours three years in a row, simply because he can't demonstrate his understanding every time the teacher asks. He will learn to read. He will learn about science, math, art, and music. He will learn about the history of his country and the history of the world. He will learn about the many heroes he can look up to from every nation, every walk of life, every race, gender, and all across the neurological spectrum. He will play with his peers and have true friends. They won't be afraid of him because he acts differently. He will have a future as bright as his potential, not darkened by social roadblocks more immutable than his own neurological challenges. He will still be different. But he will know he's appreciated and accepted in his own community. And he will shine with fulfilled potential.
Stephanie Crist is the mother of three autistic children and a freelance writer. See more of her work on Embracing Chaos: The Autism Blog, which can be found at embracingchaos.stephanieallencrist.com. She is currently studying business at Herzing University and will pursue graduate studies in written communication next fall. In 2010, she will launch her copywriting business, Purple Pen Writing Services, and begin her first book on neurodiversity. Learn more at www.stephanieallencrist.com.
As the old wisdom states: in order to understand the future, you need
to understand the past. How true is that? The past entices learning,
reminds us of what to do and what not to do, teaches us valuable
lessons, and shows us from where we have come and how far. Women
suffragists have blazed trails for our future, herbal women have taught
us how to heal and nurture ourselves, our travels have taught us to
value what we have or to reach for a better future, and our innermost
desires poke to the surface reminding us to act, that there is more we
want to do. Of course, we need to look toward the future, but the
wisdom of the past must always be our companion.
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