This Is How We Should Talk About Autism

I am amazed. I am humbled. I am wiser and more connected. This little corner of the Internet has seen over 2,000 visitors and over 3,000 page views since my last post, “Living, Not Existing,” in response to the latest Autism Speaks controversy.

Those numbers are orders of magnitude larger than my typical traffic. I don’t write for the purposes of addressing a large audience. I do so because I find it therapeutic, because it has helped me find connections in the autism community, and because I hope to end up with a journal documenting my parenting journey. That journal is something I envision sharing with both my children. It is also something that helps me recall events in the proper order and remember how my perspective has changed over time.

But with Wednesday’s post, I was grateful to find a larger audience. Suzanne Wright’s “Call for Action” demanded nothing if not discussion. The aspect that I know bothered me most was that she chose to speak of one experience, couched in the most extreme language, and apply it to all on the vast autism spectrum. It demanded a response. It demanded other opinions.

It demanded a conversation.

I am humbled that a small part of that conversation occurred here on this blog. The comments were powerful. They were thoughtful. They were hopeful. They were optimistic. They were pessimistic. They were raw. Some were nearly the length of the post itself.

For those of you who came on to say “I agree with you,” I want to say “thank you.”

For those of you who came on to say “I disagree with you,” I want to say “thank you.”

Because I have no interest in having a discussion only with people who think about or look at autism the way I do. If that were the case, the me in the months following my son’s diagnosis would not want to speak to the me of today because my position has evolved so significantly.

For those that expressed raw emotion about how difficult your lives are with young or adult children on the more severe end of the spectrum, I hear you. And I hurt for you. I recognize that my experience is not your experience, and I would never pretend to speak for someone in whose shoes I have not walked. I also recognize that my perspective might be very different when my 13-year-old is a fully grown adult.

For those who identified themselves as autistic and came on to offer their thoughts, I am wiser for having read them.

Mostly I want to thank everyone who took the time to express their thoughts and feelings. The comments were not shouted. People reacted to one another with dignity and respect.

And isn’t that what we want out of an organization like Autism Speaks? To stop using language that describes individuals on the spectrum in ways that are lacking in dignity and respect?

I have learned things from many, many different people about raising a child on the spectrum over the last 10-plus years. I have learned from doctors, therapists, teachers, aides, administrators, friends, relatives, heck even professional athletes. But I have probably learned more from members of this digital autism community — people I have never met in the flesh — than anywhere else. The collective wisdom of this community is a powerful thing. We can help one another. We can support one another. We can offer concrete suggestions or simply say “I get it,” to a complete in a stranger that makes it a little easier to get through a difficult moment.

To me, the irony of autism is that it is so often marked by rigidity — difficulty deviating from routine or seeing the world in anything other than absolutes. A pure black-and-white viewpoint is the reason my son scores off the charts in math and struggles with reading comprehension. And yet, there is absolutely nothing absolute or black-and-white about the autism spectrum — a term that represents individuals with experiences as vastly different as all of humanity at large.

The experiences and opinions of every autistic individual, every parent or caregiver, are valid. There are no absolutes here. Which is why I am so encouraged by the dialog I have seen here the last two days, and so discouraged that an organization with the visibility and power of Autism Speaks seems so unwilling to welcome other opinions and viewpoints into its world.

It has been pointed out by many people that Autism Speaks’ motto is “It’s time to listen.” The organization would be wise to heed its own advice. It might be amazed at exactly what the conversation sounds like.


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