(Note to review the CDC diagnostic criteria for autism, visit - CDC.gov.)
By Kim Stagliano
A fews days ago I began Tweeting Jerry Seinfeld like a madwoman about his interview with Brian Wiliiams of NBC. He told Williams, "I think on a very drawn out scale, I'm on the Spectrum." (Insert Kramer double take here.)
You know what, Jerry? I think on a very drawn out scale, I'm a 19 year old SuperModel. Oh wait, I'm not. I'm a 50 year old mother of three daughters with autism. Actual autism.
- Earlier this month I visited "Dayhab" programs for my 19 year old.
- I haven't slept a full night in 9 months courtesy of my 18 year old who is convinced the house alarm is going to go off in the middle of the night and wakes 2, 3, 4, 5 times in a tizzy. By tizzy I mean screaming fit.
- I'm waiting for test results for my 14 year old to hopefully (fat chance) tell me what is going on inside her body, everything is a guess. She does not speak.
So when I heard that Senfield, whom I adore as a comic, blithely said he thought he was on the Spectrum, I became angrier than The Soup Nazi. Sure, he probably meant Asperger's Syndrome and not full autism. I get that. Many people use the terms interchangeably - which is incorrect - but I understand how it happens when you are outside of the autism community. But Asperger's is (or was, since DSM-V has muddied the waters with the merging of AS and ASD) is also a diagnosis that is fraught with challenges of a different sort. Not better, not worse, but different.
Let me give you one idea of what it's like to have Asperger's Syndrome, or autism for that matter.
Not knowing you are breaking the social rules as people around you look on with - well sometimes disdain, sometimes impatience, sometimes outright scorn. It's not so funny.
When celebs like Seinfeld "come out" in some fashion, or when TV shows have funny quirky characters and claim "this is autism" (yes you, Big Bang Theory) it makes my daughters' lives harder. Why? Because the message is "See? Autism Spectrum Disorder isn't so bad. It's kind of cool actually!"
Are people with autism and Asperger's often cool and quirky and funny and wonderful? Heck yes. That doesn't mean the diagnosis is something to be worn like a badge of honor, even if the person is able channel the traits into a good life. And I wish a good life for every person on the Spectrum. Surmounting the challenges? That's where the badge of honor works for me.
Jerry's iconic TV show first aired 25 years ago, when the autism rate was just starting in increase from 1 in 2500. Today, the rate is 1 in 68. I just don't think Jerry Seinfeld is "Autismworthy."
Kim Stagliano is Managing Editor of Age of Autism. Her new novel, House of Cards; A Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.