Nov 21, 2013 2 Share

We are Strong

Black and white photo of mother's hands holding child's hands.

This hasn't been a peaceful time in the autism community. What with Suzanne Wright's highly controversial post at Autism Speaks and John Elder Robison's subsequent resignation from Autism Speaks' boards, we've seen our fair share of conflict. And with good reason, too; we're talking about core issues, getting to the heart of what it means to support people with autism. The claim I've heard repeated most often is that Autism Speaks—with its motto, “It's time to listen,”—has not listened well. As such, it was all the more important for me to take time to listen closely before writing a response. 

Here's the first thing I heard, when I stopped to listen: This latest turn of events is upsetting, yet it doesn't mean that Autism Speaks is “all bad.” (That's exactly the kind of black-and-white thinking that we found so upsetting in Suzanne Wright's letter.) Disturbing as that letter was, it doesn't erase the good Autism Speaks has done … and they have done a great deal for our community. Their website alone is an incredibly rich resource, a veritable treasure trove of toolkits. I have friends among their staffers, exceptional people dedicated to supporting people with autism and their families. I've contributed to Autism Speaks' blog, and volunteered for a “Light It Up Blue” campaign too. I did so because I wanted to make a contribution, however small. I wanted to help create a better world for my brother. 

And like so many of us, I felt my heart sink as I read Wright's call to action. As I read, I thought, There's so little hope here. I feel a terrible sadness that this was the message sent out on the eve of Autism Speaks' national policy and action summit. That fear and despair and exhaustion and emergency were chosen to describe the lives of families like mine. 

To be sure, it's important to acknowledging the realities of autism. I know what it's like to live some fear and despair and exhaustion and emergency, and I suspect that you do too. It is hard to keep your chin up when your brother has a black eye from self-injury, and might give you one at any moment. The challenges of autism are real, and they impact family members. We do get tired. We do get scared. We're only human, after all. 

But here's the bigger truth, the TRUER truth, the truth that was notably absent from Suzanne Wright's letter: We are strong. Our sons and daughters, our brothers and sisters, our husbands and wives who have autism … THEY are strong. They are brave. They face difficulties every single day, it's true, but they also bring light and laughter and innovation and creativity and so many priceless gifts. And we family members are strong too. We are brave. We walk amongst ambiguities and impossible choices, and we keep going. 

And you know what makes us strong, don't you? Of course you do. We are strong because we love each other. And that love is more powerful than millions of dollars. More powerful than fear. More powerful than anything. 

In this week of controversy, I appreciated Laura Shumaker's respectful, heartfelt piece, “Who Does Autism Speaks Speak For? 

She wrote, “My son Matthew was a very challenging kid to raise, and at times I felt hopeless and depressed. But he is now a delightful, earnest, quirky and loving 27-year-old … He had a reputation for being aggressive and even violent, but as he has grown and matured, [he] is a sweet gentle soul. He is currently attempting to get in touch with everyone who knew ‘the old Matthew' and tell them he is sorry. I admire him so much.” 

I wonder: Why wasn't a story like that chosen for Wright's letter? And I join Laura Shumaker in asking Autism Speaks to apologize for their words, for leading from a place of fear rather than a place of love. Because that's what I've learned from my brother, my friends, my family members on the spectrum: how not to give up, how not to give in to fear. It is from them that I have learned to carry on.

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Beautifully said, Caroline!

Beautifully said, Caroline! Amen.

Thank You

Thank you -- so glad to hear that the piece resonated.