Autism: You gotta be in it to win it
Each time a company or person introduces a new autism study, a new autism “therapy” or new uses for off-label drugs, parents of special needs children feel the same sense of anxiety and excitement they would feel about potentially holding the winning Powerball ticket.
Every time you even think of buying a lottery ticket, you can see the large payout in your future. You research which numbers have statistically “hit” the most, and play them. You dream of how different your life would be if money were no longer an issue. You’ve got it all figured out. This week’s lottery will be different you say. This time, you’ll win; you feel it in your bones.
Unfortunately, there's no quick fix
Lottery drawing day arrives, and you anxiously await for the winning numbers to be called by an overly perky, overly bleached blonde in an all-too-small-ill-fitted-dress (which kinda sorta describes me, come to think of it), and compare your ticket to the numbers on the ping pong balls that slide down the proverbial shoot. Then reality hits. Not only didn’t you win this week’s lottery, you don’t have one single matching number; not one.
Your shoulders hunch a little for the loss of easy money and long-term financial fix, but you’re used to it because you’ve done this dance hundreds of times in many different ways. Easy money is hard; there is no quick fix, whether it be the lottery or with autism.
Hoping for a cure
When my son Ethan was 5 years old, local Connecticut News12 came to our home to showcase Ethan’s piano prowess, educate the public about autism and detail my family’s fundraising efforts on behalf of Autism Speaks. (The segment entitled, “Imagine” went on to win a New York Emmy Award for best Public/Current/Community Affairs: Single Story/Series.)
At the time of the interview (2011), my mindset was a mixed bag of emotions: Angry, sad, happy, unhappy, grateful, anxious, self-pity. At one point in the interview, I posed my own hypothetical question to anchor/reporter/interviewer Kristi Olds, “… I hear him play this magnificent music and I just wonder: ‘Does he have to have autism to have this gift?’”
The video was posted on Autism Speaks’ Facebook site, and received many responses, many of which vilified me for wanting to find a cure. “Autism isn’t a disease to be cured,” one person wrote. Another wrote, “It saddens me that she is unwilling to accept her child as he is.” And then there was this: “They shouldn't be trying to cure him, they should be trying to help him succeed. He is a special and unique little guy and he doesn't need to be cured.” And, those were some of the “nicer” nasty letters.
As I read each comment, I respected and tried to understand the dissenters’ points of view. True, autism is a neurological disorder, not a disease; I’ve never said otherwise. But if you had a child with juvenile diabetes, cerebral palsy, pediatric cancer, muscular dystrophy, etc., wouldn’t you want to help find a viable treatment and cure to make your child’s life easier? Why is trying to help find a cure for autism so different from finding a cure from any other disorder? My child is special and unique, and I unconditionally embrace that. But, loving him as he is doesn’t mean that I will cease and desist from his myriad of therapies to help him better integrate into society.
Flash forward to January 2013, when another hypothetical question sprang to mind. “What would I do if a doctor called and said (s)he could perform a no-risk operation on Ethan’s brain that would make him completely typical?”
Without hesitation, my hypothetical answer would be, “We’ll be there in five minutes.” And then the follow-up caveat: What if the operation would make Ethan completely typical, but completely take away his love of music and his musical ability? That question stopped me in my tracks. WWKSD? (What would King Solomon do?)
Last week, a new study published by the The Journal of Child Psychology and Psychiatry states that children can “grow out of autism” or “recover completely.” Same dance, same lottery, different day. Can Ethan — or any child on the spectrum — truly grow out of autism? As anyone who’s ever bought a lottery ticket will tell you, “the House always wins.” In my house, I certainly hope so.