Editorial: Talk About Recovery
Editor's Notebook: Steve Edelson, Ph.D.
There's a dividing line emerging in the autism community-an idea with the power to define our fundamental beliefs about life with the disease.
Autism, people on one side of that line say, is a lifelong neurodevelopmental disorder with a dismal prognosis. It is predetermined, minimally treatable and lifelong.
"Predetermined, minimally treatable, lifelong…." Parents and practitioners on the other side of the line are suspicious of that language. Instead, they use a word new to the autism vernacular, a single word that sums up this great debate in four short syllables: recovery. More and more parents are choosing this side of the line with every young child who returns to us from the mysterious world of autism.
Dr. Bernard Rimland worked exhaustively to identify effective biomedical and behavioral treatments for autism, and made it known to everyone that he wanted to wipe this devastating disorder off the face of the earth.
Initially, that goal seemed like a pipe dream to many people. Most believed in a brand of Autistic Determinism: children would progress only as far as their innate potential permitted, and for most, there was little to be done but to prepare the family for transitioning the child to an institution. That view reflected the reality of the time, because before the evidence-based medical approach movement began, ARI had received only a handful of reports about recoveries from autism over the institute's 40-year history.
However, the tragedy of the exponential increase in autism over the last two decades brought many brilliant minds into this debate and opened new avenues for exploration. By 2003, parents and physicians began telling us about their growing successes as an unexpected number of autistic children began doing exceptionally well using combined medical and therapeutic approaches. Many of these children, once clinically diagnosed as autistic, no longer met the criteria for this diagnosis, and their doctors, schools and parents were delighted to no longer consider them disabled.
When the first few reports arrived at our office, we were skeptical. Recovery from classical autism was very rare. (Of course, until 20 years ago, autism itself was very rare!) However, after many conversations with parents and doctors, and after reviewing before-and-after videos and documentation, Dr. Rimland realized to his extreme delight that some children were indeed recovering from autism. Even one of Kanner's original 11 autistics, Donald T., recovered significantly from autism at age 12 when he was treated with gold salts (which may act as a chelating agent) for autoimmune issues associated with rheumatoid arthritis. Perhaps the root causes of autism, and the possibility of recovery, were actually right in front of us all along - unrecognized, but very real.
As the frequency of positive reports increased, ARI began to track the growing phenomenon, asking parents of recovered and nearly-recovered children to register on our website, www.AutismIsTreatable.com. We also asked them to indicate what type of documentation they could provide to show that their children were autistic. To date, more than 1,100 parents have signed up on the site.
Dr. Rimland did not want to use the word "cured" to describe these children. Instead, he preferred the more appropriate term "recovered."
Some children once diagnosed as autistic now exhibit only nuances of their former behaviors; for instance, some still have mild "stims," or an exaggerated focus on favorite topics. Despite lingering issues, recovered children will, in many cases, be able to live independently and happily, have productive careers, and enjoy rewarding relationships with others. They may not be "cured," but they are certainly recovered from the devastating symptoms that once blocked their path to a normal future.
Inevitably, the idea that recovery from autism is possible raises hackles. Critics have called it hogwash, stating that recovery is impossible. Some even claim that so-called "recovered children" were never autistic, or that these children simply "recovered spontaneously."
Parents of these children invite these skeptics to have the courage to view the videos, including the archive section.
One video on this website is narrated by Dr. Caroline Gomez, the co-Director of the Auburn University Autism Center. The video features one of her clients, Slater, who received evidence-based medical approach biomedical interventions. Dr. Gomez states that Slater is the only child she has seen in 20 years who has lost the diagnosis. In the video, you see Dr. Gomez administer the ADOS (the gold standard in autism diagnosis) to Slater, both before and after he received the evidence-based medical approach treatment approach. This documentation clearly shows that Slater has recovered from autism in only 10 months.
At ARI, we are very careful about giving false hope to parents; but it is a far greater error to offer no hope, when recovery or near-recovery is possible. ARI strives to give realistic hope, by stating: "Autism Is Treatable, and Recovery is Possible for Many." Obviously, we cannot guarantee recovery or near-recovery to every child with autism, although we hope that someday this will be a reality.
That hope is certainly not far-fetched. An excellent case in point is the story of PKU, once one of the most common forms of mental retardation. Children with PKU were moderately to several mentally retarded, and initially there was no hope for their recovery. However, once researchers understood the underlying cause of this disorder, they developed a simple test to identify newborns with PKU and then offered immediate dietary intervention. As a result, there are very few cases of PKU in the U.S. Autism, too, may one day be fully treatable or even preventable.
In the final months of his life, Dr. Rimland often talked about the recovered children whose overjoyed parents shared their stories with ARI. His face clearly showed how proud he was to know that increasing numbers of children are improving dramatically from a disorder that, only a few decades ago, was considered hopeless. In Dr. Rimland's lifetime alone-thanks primarily to his own efforts-we have gone from "no hope" to "hope for many." With hard work and luck, we will meet our ultimate goal: "prevention and recovery for all."