Autism Interview #60: Michael John Carley on the Current State of Autism

Michael John Carley is an internationally-recognized autistic author, speaker, and public advocate. He is the founder and first Executive Director of GRASP, the largest organization in the world comprised of adults on the autism spectrum. He’s also the former United Nations Representative of Veterans for Peace, Inc. He’s been featured in many national publications and media outlets and has written several books on autism. This week he shared his perspective on the current state of autism in America, some of the differences between his experiences and those of his autistic son, as well as advocacy tips for parents.

You have an impressive list of work experiences and accomplishments. What are you most proud of and why?

I hope people won’t be disappointed, or think me ungrateful in my answer because the autism world is what has supported my family and given me a real career…but in a prior position as a minor-league diplomat, I directed an endeavor that brought clean water to 81,000 people in the highest need area in Iraq (Basrah). It was during the Saddam Hussein days, at a time when the infant mortality rate was through the roof, and orchestrating it was beyond tricky, so…I reluctantly have to go with that one. Founding the world’s largest membership organization for adults on the spectrum (+ the books) could be argued as indirect lifesavers, but if I’m really under a polygraph…The Iraq Water Project directly saved lives.

In your opinion, where is the line between wanting to alleviate or eliminate the most disabling conditions that accompany autism and wanting a cure for autism itself? Can you describe this difference (if you believe there is one)?

Obviously I’ve fought the word “cure” for a long time, and thankfully we’ve pretty much banded together on this issue as a community to defeat those who would (mostly) unconsciously seek to stigmatize our very existences. But I look at accompanying ramifications of either stigma, or the diagnostics, such as anger, or anxiety, or depression, and I don’t have an issue with treating those elements as “bad guys.” I’m even at a point in my career where I believe that 90% of what causes unhappy lives on an internal level for us lie in our challenges towards achieving emotional regulation. Working to alleviate that stuff always makes our lives better. Being scared, people must realize, will never not suck. So I say yes to “alleviating.”

In what ways has your son’s childhood (growing up with an autism diagnosis in a family that understands autism) been different from yours (growing up without a diagnosis)?

It’s been great for him obviously from the standpoint that the grownups get him a lot better than grownups once got me. And he doesn’t have to embrace risk on a constant basis like I did in order to learn about the world. But I think his challenges are actually quite equal—they’re just different. Where my generation sees identity in embracing our differences, his often sees pathology. I had to be “first” in order to not slip through the cracks, and he doesn’t have that problem. And while its been great that he had a cleaner road (people liked him growing up, and they very often did not like me), I’d argue, and I think he’d agree, that my “dirty road” gave me a lot more confidence in the end. Funny…years ago when he was 15, a writer spent time talking to the two of us, and he wrote that our conversation was “like listening to Gloria Steinham with a daughter who just wanted to listen to Britney Spears.”

There is so much opposition among those impacted by autism regarding how to support or advocate for individuals on the spectrum. In your article “Calling a Truce in the Spectrum ‘Wars,'” you conclude with the proposition that everyone “come together to unite in the fight to get everyone the services they need and deserve, even if the needs may differ dramatically.” What does this united front look like? At the local/community level? At the government level?

All of the above, although locals leading locals will always be more effective.

You had the opportunity to participate in the first-ever Congressional hearing on autism. What does Congress need to hear in 2018 on autism? Would your message be the same or how would it change?

It would stay the same, and be focused on services. We’re still far apart in consensus-building on the other areas. But if I were orchestrating another Congressional hearing, I’d do a little more work to make sure that all the seats in the hall weren’t occupied by people who still think you get this condition from vaccines. And I’d give time to Congressional Representatives that didn’t believe that vaccine nonsense, or who actually stuck around to listen to testimony (rather than poke their head in to scream at CDC officials, and then leave). I’d also give more time to self-advocate testimony because we are a surprising selling point to government. Why? Because so much of what we advocate for has to do with attitude change…and attitude change costs a lot less than many of the expensive therapies that have greater representation, and therefore, a greater ability to lobby government for funding.

What mistakes do well-intentioned, neurotypical autism advocates make?

A. “He’s just like everybody else.” No he’s not. And there’s no bravery herein. It’s cowardice. He’s different, and you have work to do.
B. “We’ll deal with this as a family.” Well…sort of. My image (being a very pro-family person myself) is that individuals on the spectrum have their walk to walk, and it is their walk alone. Parents also, have their walk to walk…Siblings too…grandparents. Hopefully, everyone has the guts to walk their walks (and many don’t), and then experience the pro-family fantasy by coming together at a figurative dinner table…and sharing how their walks went.

C. Starting too late in providing opportunities to practice independent living. You can’t start too early.

What’s the best way parents can help their children develop a positive autistic identity?

One of the first lessons I learned in writing my giant sex book (2018) was that every generation always thinks it reinvented sexuality, and healthy sexual behavior. Expose children, but do not steer them, to the work of people like us. We actually did change the world BUT…As my son’s pathology lesson indicates, we have to let our children go to be who they are, in the context of THEIR generation, in the context of the time that THEY come of age. We are options, but we cannot be prescriptions.

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4 Comments

  1. Laura Goggins

    Reply

    Excellent interview and commentary. I have to kick the can of bees though and make just one observation. Why can’t it ever be vaccines? Why can’t it sometimes be maternal infection, sometimes oxygen deprivation at birth, sometimes due to maternal smoking, drinking, or drug use and sometimes a combination or unknown etiology? Perhaps vaccines don’t cause autism in, say, 95% of cases, but maybe in 5% of cases, vaccines or substances they are combined with (minute amounts of mercury, for instance) cause underlying genetic mutations to express? Why does it have to be all or nothing?

    • Jenna

      Reply

      Thanks for the comment! I think many people are open to the possibility of a variety of different causes. Perhaps the strong language we might hear against vaccines as a cause, for example, is in response to the strong language and years of media attention promoting them as a cause.

    • Ginny Hanes

      Reply

      My niece has brain damage from oxygen deprivation when she had whooping cough. She will never have a normal life because of foolish antivaxers. It has been shown that vaccines DO NOT cause autism ever. But the diseases prevented by vaccines DO cause death and handicaps. Anyone who chooses not to vaccinate is responsible for that.

  2. Reply

    It’s such a gift to read the words of someone coming from a very similar situation.

    Thanks for reminding me about getting my child to practice independent living skills ASAP; that’s a tough one for us.

    Interesting perspective on growing up undiagnosed then (us) versus our kids growing up now. However, I have to say that my son has a confidence I never had because he knows why he is different and that difference is celebrated in our home.

    Finally, I wonder what “services” you most want to advocate for and think are most helpful. I am finding things very daunting as my son transitions to adulthood!

    Thank you both for this great interview.
    Full Spectrum Mama

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