Answers to Isolation and Ignorance
Ron Fournier is the Editorial Director of National Journal. His recent cover story, “How Two Presidents Helped Me Deal With Love, Guilt, and Fatherhood,” details how he came to terms with his son's Asperger's syndrome.
I’ll never forget the day autism crept into my life, and how alone and ignorant I felt.
My son Tyler was 12 – whip-smart, a bit quirky and friendless. My wife and I were worried about his social isolation and academic struggles, but we didn’t know what to do beyond treating him for attention-deficit disorder. That is, until Lori sampled the NBC drama “Parenthood” and saw Tyler in the teen-age Aspie character named Max Braverman.
“Tyler might be autistic,” she told me three years ago. “Watch the show.”
I did, sitting at my computer until 3 a.m. Suddenly, it became clear why Tyler was struggling. I wept and convulsed with fear. Also, relief: Max is far worse off than Tyler, and now we might at least know what we were dealing with.
Now what? A TV show is no diagnosis, much less solace. Where do we turn? Who do we talk to? Are we alone? For those and other questions, we found autismspeaks.org and likeminded sites and organizations that provided two things we craved: Information and comfort.
We needed facts – online tests, statistics, background and resources, including lists of doctors in the Washington, D.C., area who specialize in diagnosing and treating Aspies.
We needed company – the comfort of knowing others who were affected by Asperger’s syndrome and autism, people with whom we could compare notes and who could offer us hope that Tyler would lead a happy life.
We found both information and a sense of community online – at places like autismspeaks.org and aspiesforfreedom.com.
Thank God. From those digital strands of assistance, Lori built a team of caregivers and educators who are helping Tyler learn social skills he was born without. Knowing we needed to take charge of his future, Lori convinced me to spend a year visiting U.S. historical sites with Tyler, combining his obsession with social studies with my job as a political and White House reporter.
“He would feel valued if you did this with him,” Lori told me. At her urging, I arranged meetings between Tyler and the two presidents I covered from the White House beat, Bill Clinton and George W. Bush (“Love that boy,” Bush told me nine years ago upon meeting Tyler briefly in the Oval Office). Lori thought: What better way to put Tyler’s social skills training to use than to chat with former presidents? “You can use a job that took you away from Tyler to help him,” she said.
Last week, I published a lengthy story about our road trips in the National Journal magazine, triggering an emotional and overwhelming response from the public. In thousands of emails and tweets, people thanked me and my family for sharing our story. Some saw themselves or a loved one in Tyler, as we did in Max Braverman. Others connected with my guilty struggle for a work-life balance. Many recognized in themselves – or their parents – the mistake of trying to misshape children to fit idealized notions.
The common thread: Like Lori and me a few years ago, people were hungry for information and a sense of community.
Debbie Galant of New Jersey emailed a note of thanks and, writing for her husband as well, offered Lori and me a hand. “Your piece was quite moving and well done. I’m sure you have a big circle of Aspie parents to draw on, not to mention the former presidents, but Warren and I would be happy to talk with you if you ever feel the need.” Dozens of others asked how they could help Tyler.
Kelly Kenneally, a former Bush administration official who lives in suburban Washington, said a change of schools has been a Godsend for her son with an Asperger’s-like condition. “My next mission in life (once my two young sons are a bit older) is to find a way to enable public school system to understand and help the growing number of children with these issues,” Kenneally wrote. “The schools do the best they can, but it's clear to me the lack of awareness, training and resources is resulting in so many children that are misunderstood and unable to perform. We're so fortunate to have the resources to help our son, and it breaks my heart thinking how many children are getting what they need.”
It breaks my heart, too. Lori and I are lucky to have the time and resources to surround Tyler with support. For those less fortunate, organizations such as Autism Speaks help fill in the gaps. They do what institutions can’t or won’t do. A generation ago, parents like Lori and me would have had nowhere to go with the question, “Now what?” We would have felt alone. And our children – whip-smart, a bit quirky and filled with extraordinary potential for love and success – would have been, sadly, left alone.