Dear Autism Speaks

A bend in the road is not the end of the road... unless you fail to make the turn.
~Author Unknown


Dear Autism Speaks,

Let me first congratulate you for once again making the news. You did an outstanding job coordinating the event at the United Nations, and getting high profile people to work on your latest video release, “I Am Autism." If there is one thing that Autism Speaks does well, it is making sure that people know the name Autism Speaks. Many will probably send you money as well, thinking that they will be supporting the effort to unlock the mystery that is autism.

If only they knew the truth...

If only they knew that many people with autism do not embarrass themselves at parties, temples, or in parks, at least no more than other children do.

If only they knew that autism is vastly different from AIDS, cancer, or diabetes.

If only they knew that there are many families that live with autism every day, with marriages that are stronger than ever.

If only they knew that there are children with autism that can actually speak, and that have hopes and dreams just like everyone else.

If only they knew that there are actually adults with autism that live with it every day...

If only they knew that in spite of autism, there is hope if you just make the turn at the bend.

But they will know none of these things, if they only listen to you.

You see, in your eyes, people with autism don't speak, are disruptive, and cause so much pain and suffering that they tear apart families. In your eyes, people with autism and their families live in isolation and loneliness. In your eyes, people with autism have no hopes and dreams. In your eyes, autism is a ruthless monster that has caused all these things. But there is hope, because in your eyes, Autism Speaks is the white knight that rides to the rescue, the one that goes around the world preaching autism awareness. But that white knight comes with a price, which is why your awareness campaigns mainly focus on fundraising, and not action.

We, the parents of children with autism and the adults living with autism, know better. We are the ones in the trenches every day, fighting for our rights and the rights of our children. We are the ones battling insurance companies and school administrations seeking to deny our needs and the needs of our children. We are the ones raising true autism awareness where it is needed most, with our peers and the peers of our children. We are the ones helping others by doing the little things, like watching children so parents can have a much needed night out together, or providing a microloan to help a family obtain the services they need. We are the ones who truly understand what it means to live with autism.

Autism Speaks, I would like to tell you about a little girl I know. She is a bright, intelligent girl who is more than capable of carrying on a conversation. She loves to go shopping and loves to play in the park. Her dream, one she has had since Kindergarten, is to grow up and be a teacher.

This child is my daughter Helena, and she has autism. Because she is high functioning, because she is highly verbal, because she doesn't create a scene in a park or at a party, because she doesn't keep us awake at night - because of all these things, Autism Speaks, in your eyes, she doesn't exist.

And for that, I am eternally grateful.

Sincerely,

Thomas Dzomba, proud parent of a child with autism