Why I Won’t Be at the Autism Speaks Walk this Saturday

Her words still haunt me to this day:

“He was my favorite student. I worked so hard on him all year. By the time he left my class, you couldn’t even tell….”

She was a special education teacher at a local school.

He was her student. He also had autism.  And what she meant when she said “you couldn’t even tell….” was that you couldn’t even tell he had autism.And what she meant when she said he was her favorite, was that he left her class having been “fixed” by her.

But in order to “fix” someone, you first have to believe he was broken to begin with.

I don’t know about you, but that kind of perspective about people with autism scares the hell out of me.

My son has autism.

But my son is not broken.

My son faces many challenges in his life.

But my son is not a tragedy.

My son deserves compassion and respect, and access to reasonable supports and resources.

But my son does not deserve to be considered a national emergency.

And yet, Autism Speaks, an organization which claims to speak on his behalf (they don’t), continues to portray him and others who share the autism diagnosis as a crisis. Co-founder Suzanne Wright wrote a post this week that sent chills down my spine. She claims families like mine aren’t living. That our country isn’t ready for the impending disaster because we haven’t built a city to contain the 500,000 kids with autism that will be adults in the next decade. She wants you to picture my son and others like him and she wants you to be very, very afraid:

“Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.”

Is raising my child with autism difficult? Yes. Yes it is.

Is it also beautiful and humbling and incredible and joyous and fulfilling in ways I never ever thought possible?

You bet your sweet ass.

I’m so tired of the fear-mongering. It does nothing to serve our community. It only undermines the efforts of those of us who want to teach the world to look at our children as the valuable human beings they are.

Have you ever gone somewhere in public and had your child looked upon with pity? Or disgust? Or anger? Or judgement?

I have.

Trust me when I tell you witnessing tangible contempt from a stranger for the very person you would give your life for pains you to your very bones.

So when an organization such as Autism Speaks takes to screaming from the mountain tops that the world is in imminent danger because autism is here, I think of all the people that have ever looked at my son with disdain and fear and intolerance, and I multiply them by millions and millions and I wonder if I’ll ever feel comfortable and safe leaving the house with my autistic son again.

Does it frighten anyone else that the teacher’s pet ends up being the kid that has ceased to flap and learned to script obediently and politely?

Well, it should.

Because the message behind that sentiment is a very scary one: you are only as valuable as you are repairable.

Sure, my kid needs help. He needs therapy and good insurance and teachers that see him as the whole human being he is and not some fragmented puzzle to forcefully piece back together until it fits some predetermined, prehistoric social norms.

It’s perfectly possible to present the realities of autism without undermining the respect of the individuals who are diagnosed with it. Autism is a spectrum. Not everyone requires or needs the same level of supports and not everyone is impacted cognitively, physically, or medically in the same way. Regardless of the unique needs of autistic individuals, there is one thing they all share: A basic fundamental right to coexist safely in a society that respects and values them rather then perceives them as being broken and dangerous.

And that lack of humanity on the part of Autism Speaks is why I nor my site – Special Needs Orange County – will  be participating in the Autism Speaks Walk this Saturday in Orange County, California.

Our logo will still be on the shirts and the posters and the flyers; those were printed well in advance of Suzanne Wright’s post and it’s too late to do anything about that.

But our booth will stand empty, and I needed you to know why.

So if you were planning on stopping by to introduce yourself and say hi, or you’re a new parent who just started out on this journey, here’s what I would have said to you this weekend:

“Your child with autism is beautiful. Your child is not scary. Or a tragedy. Your child is not a mistake. Your child does not need to live in a segregated city and your child is worthy of love and respect and appropriate supports without being made to sound like a crisis. Most importantly, your child deserves to be the teacher’s pet not because he doesn’t flap, but because when he does, his face lights up in a way that steals her heart.”

 

Hey Suzanne Wright and Autism Speaks: This is my son Andrew. He has autism and he makes my life worth living.

Hey Suzanne Wright and Autism Speaks: This is my son Andrew. He has autism and he makes my life worth living.

Comments

comments

Comments

  1. julie bailey says:

    You got it right. You shared it. Now let’set it spread.

Speak Your Mind

*

Switch to our mobile site