An autistic child has been killed. Again.
His name was Daniel Corby. He was 4 years old.
The following is by no means a cohesive or complete list.
March 2012 -- Mother kills George, her 22-year-old autistic son.
August 2011 -- Mother shot and killed her 13-year-old autistic son, Ben.
May 2011 -- Mother killed her autistic son, Glen, by strangling him with the belt from her coat.
July 2010 -- Mother strangled her two autistic children, a 2-year-old daughter and 5-year-old son.
February 2010 -- Mother killed her 8-year-old autistic son, Jude.
June 2010 -- Mother allegedly kills 6-month-old son, Rylan, because she suspected he might have autism.
September 2009 -- Father kills 11-year-old autistic son, Jeremy.
2009 -- Mother withholds medication from her autistic son, Jeremy, who has leukemia. Jeremy dies as a result.
Our outrage, our pleas that these deaths stop, our desire to blame, rationalize or even understand will not bring any of these children back or prevent another parent from killing their child. What will make a difference is a change in the way we as a society view autism and autistic people.
The word "autism" causes fear. So little is actually understood about autism and so much of what people hear are theories, so it is natural that people would find autism frightening. We fear what we do not know or understand. This has been true throughout history. The ever-changing "statistics," the words used to describe autism, the vastness and mutable nature of the spectrum, how indefinable it is, all add fuel to the fear. It doesn't have to be this way, though. And that is where there is tremendous hope.
A year ago I regularly lay awake at night worrying about my daughter's future. I knew of very few adults with autism. I had read everything written by both Donna Williams and Temple Grandin, but their experiences seemed far removed from my daughter's. All of that changed when I began following blogs written by autistic adults. I had an "aha" moment, the moment of realization and understanding when what was once abstract becomes real. A friend of mine told me of her "aha" moment during an autism conference she attended where she saw a nonverbal young man who reminded her of her son. He had the same gestures, the same stims as her child. She imagined this was her son in 15 years, and she was filled with despair. The following day she returned to the conference and attended a workshop on facilitated communication, led by none other than the young man she'd seen the day before. Only now he was communicating his thoughts. His words were intelligent, articulate and heartwarmingly beautiful. She left the conference in tears realizing how she had underestimated this young man, as well as her own child. She vowed never to do so again.
Assume competence. Even if there is no "proof" that our neuro-typical minds can grasp, we must assume competence. Because to do otherwise is to fail our children.
I have written about much of this at length in other posts, so I am not going to continue now, but I strongly urge anyone who is frightened to read the blogs written by autists. The veil of mystery may be lifted. It was for me. Reading the words of autists alleviated my worries. Here were adults leading the way, so that those, like my daughter, Emma, might not have to. My life, so long dominated by fear, is now dominated by hope.
There is a large and thriving community out there of both autists and parents of autists who are writing, blogging, commenting and reaching out to one another. The only requirement to join this community is a desire for connection. Because of the Internet, we all have a support system if we want it. No parent or autist need feel alone. The autists are the ones who can and will change the current perception of what it means to be autistic. They are writing and speaking forcefully, beautifully, with eloquence and power. I have said this before, I will say it again: We must listen to them. They need to be included in any discussion, organization and conference regarding autism. More importantly, they need to be included, period. Some parents have said to me, "but they have blogs." They can talk. They are articulate. My response is, yes, that is exactly why we must listen. Just because some of our children cannot speak or those who do may not be as articulate doesn't take away from the fact that these autists can and do. If our children could speak as eloquently, how do we know what they would say? If they could speak, wouldn't we listen?
The following is a list of wonderful blogs that have literally changed my life:
For parents with non-verbal autistic children:
Read any book written by the autist Tito Mukhopadhyay.
In addition, for anyone who has an autistic child no matter where they fall on the spectrum, please read this interview with Henry Markram on his Intense World Theory for Autism. It is the first time I've read a "theory" that validated everything I felt I saw in my daughter, Emma.
We may not be able to stop parents from killing their children, but we can change how people view autism.
We must not succumb to fear. Hope is all around us, we just need to stop and listen.
For more on Emma's journey through a childhood of autism, go to: Emma's Hope Book
For more by Ariane Zurcher, click here.
For more on autism, click here.