This is my autistic son Leo, my husband, and me, right around the time Leo was being evaluated for autism. And, just to hedge our bets on the Original Sin matter, being baptized.
Obviously, we were miserable. Can't you tell by the way Leo is laughing?
Miserable. We just didn't know it. But thankfully, Suzanne Wright, co-founder of Autism Speaks, and grandmother to an autistic child, took time just this week to call for a National Autism Plan, based entirely on her opinion (which, therefore, is the opinion of Autism Speaks) that autism has "stolen" three million kids, and is making those kids' families miserable. Beyond miserable, really. To Ms. Wright, my family's life with autism is a form of purgatory:
"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.
"This is autism."
You really need to read Ms. Wright's entire letter and its comments to appreciate just how ham-fisted and insensitive it is, to understand how outraged both Autistic people and autism parents are at her using our lives to yank John Q. Public's pity chains. To get just how offensive the letter is to Autistic people, consider that it caused John Elder Robison, an autistic advocate who for years tried to positively channel the clout and resources of Autism Speaks by sitting on its science advisory board, to resign in protest:
"Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target."
Ms. Wright's letter is a disappointment to those of us who have watched Autism Speaks closely, hoping it would evolve into an organization we could get behind. There were hopeful steps: they removed hurtful videos portraying autism as a fate worse than death, they'd distanced themselves from debunked theories of vaccine-autism causation, they'd even stopped using the word 'cure' so much.
But people like Jess from Diary of a Mom had come to realize that Autism Speaks leadership -- Suzanne Wright specifically -- still did not understand autism, or Autistic people. That Ms. Wright was the kind of person who saw no need to ask permission before reaching out and grabbing an autistic child's face by the chin. When Ms. Wright's letter appeared, Jess used her blog to address Suzanne directly:
"This is my daughter. She is not lost. She’s right here. And she can hear you. Whether or not you choose to believe that Autistic people can hear you, they can. How do I explain your words to them? To my daughter? How do I tell her what you mean when you speak of her parents and you say, “ How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?” How do I tell her that her Mama does not see her as a burden and never, ever will? How when you are telling her the opposite?"
What kind of woman vilifies her own grandson for a PR stunt, you may wonder? I suspect it is the kind of woman whose daughter embraces and promotes autism cure and pseudoscience cults. Such people see autism as a disease and their children as changelings, and tend to characterize autism ... pretty much the way Suzanne Wright did in her letter. Katie Wright is infamous for insisting that her son's autism is a vaccine injury despite scientific evidence to the contrary -- much of that evidence now ironically based on research funded by Autism Speaks. Even though relations between Suzanne and Katie have not always been cordial, there's likely an autism-is-misery tail wagging the Autism Speaks dog.
So now you know not to trust Autism Speaks. Who do you trust instead? Where do you send people when they ask you for autism resources? There are oh-so-many excellent options that I send people to, including:
- The Autistic Self-Advocacy Network
- Simons Foundation Autism Research Initiative
- Thinking Person's Guide to Autism
- Left Brain/Right Brain
- Think Inclusive
- We Are Like Your Child
Mostly, you need to look for and surround yourself with voices that reinforce the truth about Autistic people of any age: They are loved, they are valuable, they are capable. Do not listen to anyone who insists on seeing autism solely through Suzanne Wright's damn misery lens. No one denies that it can be challenging to be Autistic, and that autism means hard work for accommodation and understanding. But what parents like me and Autistics I admire insist upon is this: the need to do that hard work because Autistics deserve no less, not because it's a burden foisted upon us, and for the love of Pete not because we are autism's victims.
I want to leave you with an antidote from Christine at Day Sixty Seven. Every time you encounter attitudes like Suzanne Wright's, read Christine's letter about presuming competence -- even just this excerpt:
Go now to that person you love and tell him that you believe.
Even if this person you love can't eat with a utensil. Even if she hasn't mastered toileting. Even if she can't manage the simplest communication system and even Yes and No are hard. Even if he never seems to be paying attention and can't sit still for a second. Tell him that you believe. And keep saying it until you are both convinced.
And on the days when it's hard, say it even louder.
This is where Shannon Des Roches Rosa usually inserts a wry quip about writing and editing at ThinkingAutismGuide.com, BlogHer.com, and Squidalicious.com before she flounces off to do a load of laundry, or battle trolls.
More from parenting