by Jamie Pacton, MA
Autism Asperger’s Digest | January/February 2013
John Elder Robison is a man of many talents, including being a caring parent to his son, Cubby!
In the autism community, “free-range Aspergian” John Elder Robison is known for many things: he’s a motivational speaker who got an Asperger’s Syndrome (AS) diagnosis at 40; he’s a former juvenile delinquent who survived a deeply troubled childhood; and he’s a NY Times best-selling writer, a luxury auto repair genius, a toy maker, and that guy who did sound for the superstar group KISS (yep, he’s the one who designed and built Ace Frehley’s guitars that caught on fire and shot rockets).
John’s rock ’n’ roll days are long over, but he still travels a lot for events to promote his many books about living with AS. When he came to do a book event in my neighborhood in Milwaukee, I wanted to know a bit about all these things, but I was especially interested to learn more about another one of his roles: Cubby’s dad.
John’s latest book will soon hit the shelves! It’s called Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives (Crown, March 2013), and it is full of stories about raising his Aspergian son Jack Robison (http://johnrobison.com/jack-robison.php), whom John has always simply called “Cubby.”
“This book tells the story of my kid from the day I purchased him at the kid store until today. I took my kid places that my life experience tells me most young children don’t go. By the time Cubby was 15, he had stood at the controls of navy frigates, Coast Guard cutters, and railway locomotives. I also tell you all about how my kid got interested in chemistry and explosives and was raided by the ATF [the Bureau of Alcohol, Tobacco, and Firearms]. A local bureaucrat … charged my son—who was a minor at the time—with terrorism because he liked to make things explode in his mom’s garage.”
Cubby received his AS diagnosis at 16, right around the time of the trial. John noted that AS wasn’t a part of the not-guilty verdict.
“In the end, we beat them fair and square. Asperger’s didn’t have anything to do with the trial. We wanted to win the case because it was a ridiculous charge, not for any other reason.”
When I asked John about his challenges as a parent with AS raising a child on the spectrum, he brought up an important point.
“How would I know what my biggest challenges were? How would I know what my challenges have been compared to any other parent’s challenges? People ask me such things all the time, but there’s a fundamental un-answerability to those kinds of questions. My kid’s probably doing just as well as a good many kids his age. I suppose to answer that question you could read the book and compare to your own life and think about things I describe and ask yourself: are these things related to autism or just parenting?”
John did have a lot to say about the writing of his books and his future writing projects. He admitted that publishing books is tough and he sympathizes with the many people out there who are trying to write for publication.
“Initially, I was not interested in writing books at all. I wrote articles for car magazines. If my brother [memoirist Augusten Burroughs] had not written Running with Scissors, I would have never admitted to any of the things in Look Me in the Eye because I would have been ashamed to do so. It was the acceptance of my brother’s stories that encouraged me.”
Once he felt comfortable enough to write his stories, John quickly found an agent through his brother’s connections. “The biggest problems in the publishing world are getting an agent to read your book, getting editors to read the book, and then getting people to buy it. I’m a very logical person and publishing is a game of odds. If I didn’t know people and thought I had no chance of getting published, I wouldn’t waste my time on a 1 in a 10,000 chance.”
His advice for others on the spectrum to get published was straightforward (as is all of his conversation): “If you wanted to write a book about your life, like I did, then you’re no different than anyone else. Autism doesn’t change how you’d approach that. The first thing to confront is this: are you a person who’s willing to engage in the lottery of publishing in hopes that an agent will read your work? Then, think about if you can talk to the media and make public appearances. If you are not comfortable with doing these things, you need to think hard about if you want to publish.”
Having AS actually helps John be successful as a public speaker and autism spectrum disorder (ASD) advocate. “I don’t get nervous when speaking to 10 or 10,000 people. I’ve never felt anything about the size of crowds. I’ve learned that the overwhelming majority of people are nice to me and people are generally respectful because they don’t know me as someone who just goes and attacks other people.”
John’s writing process varies. When he is feeling creative, he will write thousands of words in a day. In fact, his next two books are already in the works.
“After Raising Cubby, the next book is about TMS [Transcranial Magnetic Stimulation] and the efforts of neuroscientists to alter human intelligence in an effort to remediate disability. The fifth book will be a how-to book for parenting in the same way that be different is a companion book to Look Me in the Eye.”
Although his books are known for honesty and helpful how-to strategies for living with ASD, not everything is roses for John. In an especially poignant moment in our conversation, he shared some of the very real struggles of living with ASD.
“All too often we [people on the spectrum] are able to receive negative messages, but not able to internalize positive messages, so we’re often in a low-level depression. All the praise that people give me doesn’t have the impact people want it to have on me. You know, as much as I realize that this stuff that I’ve done has been beneficial, I still think that if I could have been an average, happy, popular little boy, I would have rather been that. Because being smart and creative and expressing all these things—it may be helpful to others but I don’t know really what it’s done for me.”
Even though this sort of thinking is a reality in John’s life, he still ended our conversation on a positive note. “It’s important to remember that many of us emerge from disability to certain extents. Although the difference is permanent, the disability is not. I’ve learned that being different is ok, and that’s something for every parent to keep in mind. It’s difficult for you to know your own kid’s potential or for any of us to know our potential.”
Although I took many things away from my conversation with John, this insight is what stuck with me long after we parted. Yes, my son with ASD is different, but he’s not broken. And, like John, the introverted sound guy for KISS who never thought he’d write or sell books or become an inspiration to millions of people, my spectrum child is capable of so much more than I can imagine.
Jamie Pacton, MA, is a writer, professor, and mother to two young boys (one who is on the spectrum). Visit her website at www.jamiepacton.com.
Watch for an article by Dr. Temple Grandin about TMS and John Elder Robison in the March/April 2013 issue of Autism Asperger’s Digest! You can also read a great AADigest article by Robison at autismdigest.com/the-path-tofitting-in/
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