Last week, Suzanne Wright, Co-founder of the organization Autism Speaks, wrote this. A “call to action.” Here is a small tidbit of her words about autism families:
“These families are not living. They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”
She uses words like “national emergency” and refers to children with autism as “lost.”
This is my response to Suzanne Wright. I am not going to speak for anyone else but myself (just as Suzanne Wright should not have spoken for the entire autism community). I cannot pretend to know what it’s like to be autistic. I can only know what I see every day by watching my autistic son. And what I know, without a doubt, is that we are not merely “existing.” We are very much living. We are not in despair. We, in fact, have much hope. And I do not consider my son a national emergency. He is not someone to be feared.
All I can do is describe my family’s autism.
This is our Autism.
Some might say it’s lonely. That may be true, but did it occur to you that Autism wants to be alone sometimes? Maybe Autism just wants to be.
This is Autism. It works really, really hard. Sometimes it even works for tickles. (Yes, Autism laughs.)
This is Autism. Proud of all the hard work.
This is Autism. Surprising everyone all the time.
This is Autism. Not normal, and not about to conform.
This is Autism. Finding the joy in every day life.
This is Autism. Looking at things from a different perspective.
This is Autism. Taking something simple and transforming it into pure happiness.
This is Autism. A tough climb, but determined nonetheless.
This is Autism. Because it’s always a good time to sing your heart out.
This is Autism. Not afraid to take risks.
Is Autism exhausting? You bet it is.
But Autism is also love.
Autism does not take anything for granted.
Autism sees what I do not see, hears what I do not hear.
This Autism. Reminding me to just slow down. Stop. And take it all in.
Autism Speaks does not speak for my family. Suzanne Wright: My son is not a national emergency, and we are not merely existing.
We are living.