When I saw the cover story, “After Autism,” in Sunday’s New York Times Magazine, I must confess to feeling both vindicated AND envious. From the moment my daughter, Sarah was given the dreaded A-word diagnosis at 12 months old, I always believed in the possibility of a complete recovery. Maybe it was magical thinking, but I had to wake up each day with the hope that I could somehow help my baby girl grow up, make friends, graduate from college and live an independent and productive life. Back in the early 1990s—before autism was an epidemic and Applied Behavioral Analysis (ABA) was the preferred treatment—I stubbornly believed that Sarah would one day catch up to her neurotypical twin brother, Max. It didn’t matter that most of the “experts” and test scores predicted that she would NEVER catch up—let alone graduate from college.
Diagnosed very early, I had hoped that intensive, early intervention would enable Sarah to emerge from autism completely, like the teenagers featured in “After Autism.” However, unlike those success stories, Sarah’s progress was painfully slow. We tried MANY treatment approaches: speech therapy, occupational therapy, Dr. Greenspan’s floor time, vitamin B supplements, cranial sacral therapy, skin brushing, joint compressions, special schools, along with a variety of drugs. It was not until Sarah was seven and her behavior was completely out of control that we tried ABA (against the advice of her psychiatrist). By age 7, we were told by the ABA therapists, “it might be too late” for Sarah to benefit, but we tried it for a few years anyway. At age 10, she began seeing Dr. Harry Wachs at the Vision & Conceptual Development Center in Washington D.C. (now in Bethesda, MD). I also took my daughter to an allergist and tried a modified gluten free diet. There was no panacea, so I felt obliged to try everything. My strategy was practical and unscientific: throw enough you-know-what against the wall and hope for the best. For reasons I still don’t understand, Sarah finally began to improve dramatically when she hit puberty.
Did my strategy work? Yes and no. Like the old Virginia Slims commercial, Sarah has “come a long way, baby.” My daughter is “high functioning,” (but not Asperger’s). On the positive side, Sarah graduated cum laude from Pace, after earning an Associate’s Degree from Landmark College (also cum laude). However, it took her 5 years (including summers), careful selection of a major, and a tremendous amount of tutoring. Along the way, Sarah managed to make a small group of friends, find a boyfriend, and work summers, volunteering with young, special needs kids as a teacher’s assistant. She even co-starred in a film, “Keep the Change,” about young adults with autism who struggle with relationships.
Sadly, though, Sarah is NOT cured. Try to have a conversation about what’s going on in the world, or about anything that isn’t simple or straightforward, and you will still see the symptoms of autism. Her voice will grow loud and defensive. As Sarah becomes agitated, she will repeat herself, talk in scripts, and probably stop making eye contact (which is nearly normal) when she’s on familiar ground. There are still many life skills and social situations which pose a challenge. We still haven’t convinced her that money doesn’t grow on trees or endlessly pop out of an ATM. Then again, there are probably many neurotypical 20-somethings who haven’t mastered budgeting either.
Unlike 20 years ago, there are now people who are against eliminating autism. Welcome to the world of neurodiversity. Ari Ne’eman, president of the Autistic Self Advocacy Network, says “autism isn’t an illness in need of a cure.” He believes that certain qualities of autistic people, which don’t conform to society’s norms, are actually valuable to a person’s identity and to the world. As always, Temple Grandin, the famous autistic author and animal scientist is the prime example. Grandin has always believed that her autism—which manifests in intense focus on details and unusual visual-spatial skills—enabled her to design humane slaughterhouses for livestock. Furthermore, Ne’eman argues, “What proof is there that those who lose the diagnosis are any more successful or happy than those who remain autistic?”
The truth is nobody knows whether a person with autism is “better off” with or without the symptoms. Lower functioning people with autism are unable to communicate their feelings on the subject. Higher functioning people with autism who ARE able to communicate their feelings and preferences cannot speak for the entire spectrum. As a parent, I honestly wish my daughter was among the 10% of autistic people who made a full recovery. That does NOT mean, as Ne’eman suggests, that I’m really saying ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child.’ I wouldn’t trade Sarah for anyone. (Ne’eman obviously has no idea what it’s like to be a mother.) What I want for my daughter —and what I suspect parents of other autistic kids want—is for their children to be able to voice their own feelings in this complex conversation.