Two of my four children are autistic. Every day my children make me proud to be their mother. I am continually amazed by the effort and creativity my autistic children display in trying to navigate a world that is so foreign, and sometimes hostile, to them. I am amazed by the compassion and understanding (traits so often lacking in adults) displayed by my children. Autism presents challenges for my family. There are places my family and I don’t go and things we don’t do, but for us autism is simply another thread in the tapestry of our lives. Receiving a diagnosis of autism for my children didn’t ruin our lives, crush our dreams, or steal my children away. For us autism has opened up a window into the complexity of personhood and human relationships.
Far more challenging for my family are the misunderstanding and fear of autism in our society, the negative attitudes of society towards autism and autistic individuals, and the resulting lack of services and barriers to services for autistic individuals. Today autistic adults are mostly ignored by law makers, service groups, and advocacy groups. Autistic individuals are cast out of public places with no realization or understanding that they have already voluntarily excluded themselves from so many other places.
For all of the autism awareness we supposedly have today people still do not understand autism. They fear what they do not understand and act accordingly. Autistic individuals need understanding and respect not fear and loathing. Given adequate support autistic individuals take up their places as fully functioning members of society.
I ask that we educate and support the teachers who are responsible for educating autistic children and young adults. In recognition of the fact that one does not cease to be autistic at 21 I ask that we support job training and life skills programs for individuals in preparation for them entering the work force and college. I ask that we encourage industry to see the value of autistic individuals as employees. I ask that we not see accommodations for autistic individuals as burdens, inconveniences, or drains on resources, but rather as opportunities to allow this group of Americans to fully take part in the American dream. I ask that we make available opportunities for adults to be diagnosed and receive any treatment they may need. I ask for rigorous ethical and medical standards in research on safe and effective interventions for autistic individuals. I ask that we educate and support the family doctors and pediatricians whom parents often first turn to for support in caring for their autistic children. Finally, I ask that we stop wasting valuable resources chasing a connection between autism and life saving vaccines that numerous reputable studies indicate does not exist.
My faith teaches me that every human being is a marvelous creature made in the image of God with a purpose. Let us move along the path that helps us to recognize how valuable autistic individuals are. In solidarity with my children and with autistic individuals everywhere I say we are not broken. We are not poisoned, we are not stolen, and we are not trapped in another world. We have always been with you, fearfully and wonderfully made. We are autistic.
Thursday, October 02, 2008
Autism Awareness Forum Speech
Well, I made it through today and made a few new friends. There were the expected mentions of vaccines. One woman even gave the panel a copy of Jenny McCarthy's latest book. There were also much more useful suggestions like getting better dental care for kids with disabilities and more social skills training opportunities for children and adults. Here's the text of the speech I gave at the New York State Assembly Republican Regional Forum on Autism Awareness. I made only one deviation to point out that a forum on autism awareness should seek out more autistic individuals to teach them about autism.