April 27, 2011
For several years, my sister has been peddling American Idol like a drug dealer. Her friend hooks her up with tickets for rehearsals and show tapings, so she constantly starts our phone calls with “I have free tickets and you are going.” For 6 years, my answer has been the same “I’m too busy with TACA , and I don’t know how to play anymore anyways” (another story for another blog.) But last week, my answer was different. Last week when Jamie called, I responded “I’m in. What time do we leave? ”
What’s different about this year, you ask? Two words: JAMES DURBIN!
I know I am late to the American Idol party, but I caught the episode when James tried out in San Francisco and his back story brought me to tears. Lost his father as a young boy? Aspergers (the highest functioning level on the autism spectrum) AND Tourette’s Syndrome? Holy Moley that’s a lot of stuff to overcome!
Early in the season, James sang “Dream On” with Steven Tyler – all confidence and swagger. Few young people on the planet could pull that off – much less a kid on the spectrum. But that’s James - an extremely talented young man who happens to be living with Aspergers. I was HOOKED - I had to see what this kid could DO.
Now I am not writing this blog to prove my sister has finally succeeded in “Idolizing” me (although guilty as charged). Rather I feel compelled to respond to comments I have read on the internet from folks who question whether James really has Aspergers or not. Some people have speculated that he is using these diagnoses as a ploy for votes. Call me a Momma hen but that ruffles my feathers as though he is MY own chick (no offense to his mom Judy or his girlfriend and young son). Some people actually think he is trying to gain popularity by slapping himself with a label as unpopular as Aspergers. Trust me – after 11 years riding the spectrum train, there have got to be easier ways to make friends!
Disclaimer: I have no credentials to diagnose anything. My experience is spending a decade observing thousands of kids on the spectrum and talking to their parents. I did not interview James or spend any time interacting with him. My Durbin experience was limited to enjoying a rehearsal for the show with hundred of other fans – a small, abnormal glimpse into someone’s world. So there you go, the following is just “Lisa’s opinion.”
When the music comes on no other contestant is better or more focused than James Durbin. He is a GREAT performer and takes flight while on stage. On TV, James seems in his element – both performing and talking about his performances. His tics are often very present before and after his performance, but are absent when he is doing what he loves most – singing. During the rehearsal of the show, however, James exhibited quite a few features consistent with others on the autism spectrum. What I watched was not the official taping of the show – just a rehearsal. While I was there small talk on the set was kept to a minimum. Prior to coming on stage, James paced back and forth in a specific pattern before his turn to sing. He had helpers there to guide him toward his marks and move him from point to point. Many of the Idol contestants get help with marks but James seemed to have a little more help than others.
I could hear him clearing his throat a lot, a behavior many often associate with a cold but those of us who live with people on the spectrum know this can be a symptom of both autism and Tourettes. He did not seem to share a lot of eye contact or interact much with others. But when the judges were talking to him about his performance - he gave them 100% of his laser focused attention. Anyone who has a kid on the spectrum has experienced this – the ability to intensely focus on one thing and a seeming disinterest in virtually everything else. None of these behaviors alone places someone on the autism spectrum. But all of these behaviors are consistent with someone who has a spectrum diagnosis.
When I went home after rehearsal and watched the live show that night - it was a completely different experience. James’ performance was awesome as usual, but the Asperger-like behaviors had all been edited away! I understand now why people might watch the show and think that James may not resemble the loved ones they know with Aspergers. In the end, I was reminded that American Idol is a TV show, and like all TV shows, is edited and packaged for entertainment. It doesn’t claim to be a documentary on autism and we can’t hold it to that expectation. (Watch the amazing PBS series “autism now”- for a true documentary on autism. Link: http://www.pbs.org/newshour/news/autism/)
Since auditioning for Idol, James has become a bonafide rock star. More importantly to me, he is a huge inspiration for many families in the autism community, including mine. TACA families cheer James on, enjoy his talent and marvel at his ability to overcome his labels. In a short time this young man has become a symbol of hope for hundreds of thousands of parents who are more than little scared how their child will fare as an adult.
I give a lot of credit to James’ mom and family. Team James has helped cultivate an obvious talent and now that talent is motivating an entire community. Every week he teaches us that a label does not define a person. He gives many families a huge helping of H-O-P-E. He shows us that his disability (or two) does not deter him from his dreams. There are other kids on the spectrum that need our encouragement to explore, find and cultivate their interests. I know better than anyone that this is not going to be the case for every child on the spectrum, but it can be true for many.
In the past 11 years the most important lesson I have learned is that a label doesn't predict the future. We know with early intervention and treatment many children with autism CAN lead promising lives. In Dr. Temple Grandin’s own words “If I did not have my work, I would not have any life.” We need to help as many of our kids as possible find that work. For James it is music - and I for one can’t wait to attend his first concert as a full-fledged Durbinator!
If like me, James inspires you with both his powerful voice and equally powerful backstory - tune into American Idol and vote for James. This talented young artist can win this competition because above all, he can SING – not just because of a diagnosis or two.