There is no such thing as false hope. There is only hope.
This is a guest post by Annie Waters. She lives in the Northeast with her son, daughter and husband. She still helps families “on the journey” whenever she can and will, when the time is right, help her son understand his history and let him decide whether he wants to share it.
Yesterday as I scrolled through Facebook, I came upon a link to an article about a recent study involving children with autism who recover. The article danced around word “recover.” When I “googled” the story later, the majority of the headlines about the study had titles such as “Can Some Children ‘Lose’ Autism Diagnosis?” as if autism was something they accidentally left in the developmental pediatrician’s waiting room. Some of the experts interviewed talked about kids “outgrowing” their diagnosis. No one used the term “recover.”
I suppose they fear of giving parent’s false hope. I understand this fear. It seems every day I meet people somewhere along their autism journey, traveling down a road paved more smoothly by the parents and children and advocates who have traveled before them. I have watched painful setbacks and joyful progress. I’ve watched so many parents run this marathon, with no finish line in sight, while our finish appeared in the near distance and we were able to put it behind us.
Fourteen years ago, we were told there would be no finish line, no recovery, and no cure for our son’s autism. His developmental pediatrician cautioned me not to go “overboard like some mothers” and subject our son to a 40-hour per week therapy program. He told us that autism was a life-long disorder.Diving into a 40-hour week ABA program, and dietary therapy, we decided at the time, as so many others do, this doctor wasn’t going to be taking away our hope.
Through a variety of interventions and with the assistance of a team of angels, we began the recovery of our son just before his third birthday. At 3½, he no longer met the criteria for an autism diagnosis when he was administered the ADOS, the gold standard of autism assessments, for a clinical trial at a prestigious children’s hospital. At 4, the doctor who diagnosed him concurred that our formerly toe-walking, hand-flapping, Thomas the Tank Engine obsessed, language delayed child was now typical, saying, “I think your son has something to teach all of us.”
Looking back, that time in our lives still seems surreal. We were pretty sure we had been doing all the right things to treat our son’s autism, because we had so much help from friends who were ahead of us on the journey. How could it be that we were having this result when no one around us was? After five more evaluations from psychologists, psychiatrists and pediatricians, we decided that seven professional opinions was sufficient permission to believe the impossible was possible.
I remember being frustrated with Catherine Maurice, the author of Let Me Hear Your Voice , who hid her recovered children from public scrutiny. As our son became a one-trial learner, tested out of services and exhausted our behaviorist’s ABA curriculum, I told myself I wouldn’t hide him or our story, that we owed it to everyone who had helped us along the way to do the same for those who came after us.
Eventually it became evident that our son was in a fish bowl. I received emails asking me for the names of his service providers, for lists of everything he ate, for descriptions of him at the time he was diagnosed. One parent witnessed him having a melt down and insisted it was “autistic” behavior. Others speculated that he was mis-diagnosed in the first place. I became accustomed to people carefully using the words “best outcome” with the ever-present air quotes around them, suggesting to me that they weren’t sure whether our son was recovered or not, and couldn’t commit to that possibility. I began to understand that it was necessary to “hide” my son. To the best of our ability, we have given him his privacy.
I joined an Internet discussion group for parents of “recovered kids.” There were probably 15 of us in this closed, moderated, carefully screened group. For a short time, we wrote about our kids’ triumphs and our own form of survivor’s guilt. Eventually, I changed my email settings so that I could only see the discussion online. Years later, I checked in to see how everyone was doing. There were a few updates, but it seems everyone had moved on. There wasn’t anything to discuss anymore. We had taken comfort in the validation from each other that recovery is real and that is all we needed. We just needed to wait for the science to validate it for everyone else.
It is time for the autism community to acknowledge the existence of recovery. Doing so is not making a promise. It is validating hope. Calling recovery from autism “losing” or “outgrowing” the diagnosis is making a start. In a West Wing episode that aired back in 2005, Bradley Whitford, who also happens to be an autism advocate, wrote these lines for a fictional presidential candidate that gave us a beautiful clarion call to resist this notion of false hope. “Hope is real. In a time of global chaos and instability where our faiths collide, as often as our weapons, hope is real…There is such a thing as false science, there is such a thing as false promises, I am sure I will have my share of false starts. But there is no such thing as false hope. There is only hope.” And we all need that, whatever the outcome.