This is not a post that I look forward to writing. When it comes to the controversy in the autism community surrounding Autism Speaks, I have found the best policy for me has been to avoid the shouting.
The sometimes deep divides in the autism community trouble me. And my own beliefs on autism have changed so much over time that I don’t believe drawing a line in the digital sand to stand on a principle I may or may not still hold in a few years makes a ton of sense.
When it comes to Autism Speaks specifically, I have been a quiet supporter. I donate. I have encouraged others to do the same, even as the organization’s viewpoint and methodology started to diverge from my own. I did so because I believed in the mission. I believed in the power of an organization that size to mobilize money, resources and the attention of politicians. I saw important work, like insurance reform, being accomplished.
I believe that Autism Speaks can be a powerful force for raising awareness and understanding, doing important research, lobbying for transition and adult services and more.
But I can’t support Autism Speaks any more.
My breaking point came with this week’s posting of co-founder Suzanne Wright’s “call to action” ahead of Autism Speaks’ policy summit in Washington.
If you haven’t read it, the link above will take you to the post. As of this morning, it was still live on the Autism Speaks site, with a comment thread numbering in the hundreds and a sentiment that is probably 99% negative.
I don’t want to color your opinion of the post, so I’ll urge you to read it. I just want to tell you where the organization lost me as a supporter.
In the post, which is meant to serve as a call for a “national autism plan,” Ms. Wright describes 3 million children in the U.S. with autism diagnoses as “lost” and “missing,” among other things. She describes the struggles and sleeplessness of their parents and says:
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
Later, she goes on to ask:
And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?
Three times in the post, she punctuates the horrible situation she describes by saying, in bold:
This is autism.
I have to admit, I did not make it all the way through the post the first time. I stopped at “These families are not living. They are existing,” as a mixture of anger and sadness began to well up inside of me.
I began to compose a response. I have met several high-ranking people at Autism Speaks. I have become friendly with some of them. This was not the mission they professed to be serving. I needed to let them know how misrepresented I felt by Ms. Wright’s words. But first, I went back and read the entire thing to make sure I wasn’t overreacting and missing some larger point. I wrote a long email to Autism Speaks but sent it to Veronica and some friends in the autism community first. When they came back with the same opinion, I sent it.
Not living? Merely existing? Who is Ms. Wright to make a blanket judgement about millions of people touched by autism? What does she know about my family?
Were we not living when we watched my son skate in front of 47,000 people like it was nothing? When he scored five goals on his peewee hockey team and was celebrated by his coach and teammates as the hero of several games? When we learned he made the honor roll and the principal’s list? When he began to self-advocate? When he made a friend on vacation? When we took one of our many, many, many sports road trips and spent deliciously long blocks of time in each others’ company, leaving the comforts and routines of home behind in pursuit of our shared interest? When he sends me (in what has become one of my favorite regular routines) text messages asking if we can play the next game in our long-running street hockey series as soon as I get home?
Was I supposed to view that as merely existing?
We’ve had our struggles. We’ve had our low moments. Nowhere in my preparations to become a father did I envision finding my wife, pregnant with our second child, sobbing on the floor of the kitchen shortly after our son was diagnosed. I don’t recall reading how to comfort a child having an all-night, full-blown panic attack about the shots on goal totals in an NHL playoff game in any of the What To Expect books.
Ms. Wright’s language demonizes autism, and with it, demonizes my child and attempts to cheapen my parental experience. And if things get too much and we “break,” is that supposed to be my son’s fault? I’m sure Ms. Wright would tell me, no, it’s autism’s fault. But that’s the point. Autism is not a germ my son came into contact with. It’s not an outfit he puts on for the day. It’s part of who he is and I can no more demonize that than any other part of him, or my daughter, for that matter.
Maybe Ms. Wright isn’t addressing me. Ryan attends mainstream school (albeit with an aide, many modifications and plenty of other support). He struggles socially, but he can express himself. He’s smart. He’s loving. Maybe Ms. Wright only meant her description about those families who deal with challenges that come from having a child in the more severely affected end of the autism spectrum. I do not, nor would I ever pretend, to fully understand the experience of a parent with a non-verbal, self-injurious child prone to wandering.
There’s just one problem with that, and it gets to the heart of why I can no longer support Autism Speaks. You can’t get to the numbers — the famous 1-in-88 children and 1-in-54 boys — without including the likes of my son and many, many more who are more mildly touched by autism. Without including the full width of the autism spectrum, the numbers don’t support an “epidemic” or a “crisis,” two words that often appear beside those statistics in Autism Speaks’ materials.
Autism Speaks is trying to have it both ways. They use exploding numbers to call it a crisis, but descriptions like Ms. Wright’s are nowhere near my reality, nor are they for many autism families. I feel they have made a calculated decision to use fear to spur to people to action, to giving, to caring. It’s dishonest. And it has real consequences. Over and over when I finally read the entirety of Ms. Wright’s post, I had to ask myself how would Ryan feel if he read this? If he thought we had a lower quality of life because of autism? If he thought he was a burden?
My son is not a burden. Sure, he comes with some unique challenges that have shaped our experiences and put us on a different path. But a burden? Never.
I have a confession. From time to time, someone will tell us, with the best intentions, something like “I don’t know how you do it.” It always makes me feel guilty. One, because I know the challenges we face are mild compared to so many others and we are lucky to have access to the resources that help mitigate those challenges. But more so because I don’t think there’s anything exceptional about the way we parent either of our children. Sometimes we do a great job. Sometimes we make mistakes. Sometimes we go to great lengths to make our son or daughter happy. Is that a burden? No. It’s parenting. There’s nothing exceptional about playing the hand you’re dealt. Children do not come with a guarantee. If anything, autism has made me a better parent because it has taught me to slow down, focus on what’s important, celebrate triumphs of any size, and cherish time spent together. It has made me more tolerant and taught me to recognize difference in others.
Autism Speaks’ decision to embrace fear is a shame, because I do think there is a crisis, and I know they have the power to help mitigate it. I have seen the level of support it takes to allow my son to be an academic success story. And he is but one child, mildly affected, of many. I fear our schools are going to collapse under the weight of the need to support so many children. We need research into effective strategies. We need to know what works. We need to build understanding and tolerance of differences. We need to educate and provide resources to the parents of the newly diagnosed. We desperately need transition and job training services. We need to work with colleges and universities to find proper placement for those on the spectrum whose social challenges might otherwise prevent them from getting a college education and unlocking all the options that come with one.
Autism Speaks can be helpful in all those things. But they have embraced fear in an attempt to scare people into caring. It’s disingenuous. It’s dangerous. It’s wrong. Worse, it jeopardizes the mission we need an organization like Autism Speaks to serve.
They have lost me as a supporter, financial and otherwise. For me, the ends no longer justify the means.
Note: There have been many, many thoughtful posts about Ms. Wright’s “Call to Action,” as well as hundreds of insightful comments on the original post. I encourage you to read them and form your own opinions. Here are some helpful links:
“no more – a letter to suzanne wright” – A Diary of a Mom
“Autism Speaks is not and has never been listening despite their slogan” – Autism From a Father’s Point of View
“Dear Ms. Wright, Autism Speaks and any others out there who may read this…” – Mama’s Turn Now