Contributed by: Nicole Pearson, PsyD, BCBA-D
A new research study published yesterday in the Journal of Child Psychology and Psychiatry found that a small group of 34 school-age children and young adults previously diagnosed with an autism spectrum disorder reached “optimal outcomes,” essentially making them indistinguishable from their typically developing peers. As a practitioner working with children with autism and their families, I read the journal article with great optimism and caution. My optimism is rooted in what the evidence-base has already shown to be true: that early diagnosis and early intensive behavioral intervention are essential to achieving more positive outcomes in children with autism. If the findings from this study will further the cause of ensuring greater access for more families to these critical but too often unavailable services, then I welcome it. However, with news headlines blaring such declarations as “recovering from autism now possible” after the National Institutes of Health (NIH) released yesterday’s results (NIH funded the study), I also couldn’t help but wonder what the broader implications of these findings would mean for families and their children with autism.
This idea of recovery from autism is nothing new. In his seminal study published in 1987, Dr. O. Ivar Lovaas advanced the idea of “recovery” as a “best outcome” of intensive intervention based on the principles of Applied Behavior Analysis (ABA). He reported that 47% of his study participants who received 40 hours of intensive therapy weekly achieved intellectual and educational functioning on par with typical first-grade peers. Subsequent studies (numbering in the 100s) have continually supported Dr. Lovaas’ conclusion that children with autism benefit greatly from early diagnosis and intensive behavioral intervention though most report fewer cases of individuals achieving similar “best outcomes.” Many studies, including several led by Deborah Fein, Ph.D. from the University of Connecticut, the lead author of the study of yesterday’s news, have resulted in a general consensus that anywhere from approximately one to twenty percent of children with an autism diagnosis no longer meet the diagnostic criteria some years later. The reasons for why this happens for some with autism and not others remain unclear. Again, research has posited that in most instances of recovery, the individuals typically had a “milder” form of autism (i.e., PDD-NOS as opposed to Autistic Disorder), as well as higher IQs and motor functioning.
In speaking with the New York Times about the current study, Dr. Fein said, “I want to stress to parents that it’s a minority of kids who are able to do this, and no one should think they somehow missed the boat if they don’t get this outcome.” She also went on to underscore the importance of behavior therapy and the dedicated efforts of many in working with the child, saying, “These people did not just grow out of their autism. I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.”
As Dr. Fein summarized so concisely, it’s this worry or burden that some parents may feel in light of these recovery stories that led to my conflicted feelings of hope and caution upon reading about the study outcomes. Are there hundreds, or even thousands of parents who are now asking themselves whether they did enough or are doing enough today for their child with autism? Or for those living in disadvantaged areas where limited access to quality health care meant their child wasn’t diagnosed and didn’t start receiving services until age five or later – are they now blaming themselves?
As clinicians, one of the first questions we are almost always asked by parents who have just been told that their son or daughter has autism is whether or not there is a chance that he or she could recover from it. This question is not unique to the U.S. Our partners abroad are asked the same question. And for all of us, it is a tough question to answer. Aside from being the bearer of difficult news, we also want to be a source of hope and encouragement. Sure, we can cite the 1% to 20% “recovery” statistic. But in our opinion, hope is not just going to come in the form of some mathematical statistic. Instead, hope will come with parents seeing that through their efforts and those of a dedicated intervention team, they can teach their child, communicate with their child and learn to optimize their child’s unique strengths and abilities no matter where in the world they live.
This hope makes parents the best possible advocates for their children. And so often, they fight not only to affect change in the life of their own son or daughter with autism but also for the many others who will follow. Autism awareness, acceptance and funding have been the outgrowth of the tireless advocacy efforts of these parents. Most of the best educational programs in the world have been borne out of similar such efforts. We have learned so much and come so far but a long road still lies ahead. Yesterday’s optimal outcomes report is to be the first of many which will look to better understand the role of such factors as brain functioning and structure, IQ, specific interventions and other biological factors that may lead to better outcomes. Hopefully they will shed some much needed light on so many questions that remain about long-term trajectory in autism.
From my perspective, the best possible outcome of Dr. Fein’s work is not grounded in providing a renewed hope of recovery -- though learning more about how we can increase such possibilities will only benefit practitioners, families and their children with autism. Instead, it’s about continuing to progress forward by empowering families and practitioners around the world with the knowledge that intensive, ongoing behavioral interventions do make a difference and arming them with the evidence they need to advocate for greater access to these services so that every child has the chance to live his or her best possible life.