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.

     Of course I am profoundly grateful for all the progress my daughter has made.  I’m proud of Sarah for her courageous motivation and work ethic that made her many achievements possible. I know how much worse it could be from reading in “After Autism” about the young man who made little progress, despite doing the same ABA program for the same number of hours as another boy who has completely recovered.   Catherine Lord, one of the researchers in the Times article, who has studied autistic kids for 40 years, says: “I’m pretty good at what I do. But I can’t predict who’s going to get better and who’s not based on what they look like when I first see them.  In fact, I not only can’t predict who is going to turn out with optimal outcome, but I can’t even predict who will have high functioning autism and who will be low-functioning.”  That’s a pretty scary and discouraging statement coming 23 years after Sarah was born.  Frighteningly little has changed over that period of time. How is it possible, after billions have been poured into research, that no one knows what has happened to the brains of people who no longer have autism?  Were their brains different at birth from those of other autistic kids? Or were their brains similar at birth, but changed from treatment?

     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?”

     Ne’eman has a point.  Carmin Diflorio, a no-longer autistic 19 year old said: “When I was little, pretty often I was the happiest a person could be. That went away when my sister started teasing me, and I realized that (hand) flapping wasn’t really acceptable.”  I still remember Sarah flapping her hands with joy and excitement, but I also remember my daughter wouldn’t let anyone HOLD her hand.  Trading in hand-flapping for hand holding has enabled my daughter to connect with a boyfriend, and might one day help her realize her very normal dream of getting married.

     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.    

     I’m glad there’s a conversation that de-pathologizes autism.  Let’s find new ways to talk about autism, and let’s hear from the young adults on the spectrum who were yesterday’s kids.  But we should listen to ALL of them, not just the ones who articulate best (or loudest). Let’s not marginalize (or ignore) the voices of all the children on the spectrum who CAN and do benefit from medical and other therapeutic interventions  Early treatment of autism—whether or not it “cures” the child completely—often makes a tremendous difference in the quality life for the child AND the family.  Sarah can tell you.


Like What You're Reading?

Subscribe below to receive alerts when I publish new articles. 

You have Successfully Subscribed!