Adel Najdowski, PhD, BCBA-D
Director and Co-Creator of SKILLS and Manager of Research and Development at the Center for Autism and Related Disorders
Recovery from autism is still a controversial topic and many in the autism field are still afraid to discuss it. We at CARD have seen recovery for decades and we make it happen for some of the children that we treat. We are not the only ones. Treatment providers all over the country who have been doing top-quality ABA treatment for children with autism, for a minimum of 30 hours per week, for two or more years, have been recovering children for years. Let me explain exactly what we at CARD mean when we say a child has recovered from autism. We mean that the child no longer displays clinically significant impairments related to autism. In other words, there is nothing left to treat, the child is doing just fine. But it’s not good enough to just take our word for it, so here is how we measure it.
There are three main pieces to how we measure recovery from autism: 1) the child scores in the average range or higher on valid standardized tests of intelligence, language, socialization, and daily living skills, 2) the child is earning passing grades in a regular education classroom, with no specialized supports, whatsoever, and 3) the child is evaluated by a medical doctor or psychologist who is an expert in diagnosing autism, and the clinician’s conclusion is that the child no longer qualifies for any diagnosis on the autism spectrum.
You may have noticed that we use the word recovery in some of the marketing and public relations materials for SKILLS and you might be wondering if we are saying that SKILLS is going to recover your child. We are not saying that, and there is currently no guarantee that any treatment in the world can recover your child from autism. SKILLS is the best quality multidisciplinary system in the world for designing and tracking progress in ABA programs. Top-quality early intensive ABA treatment is what brings about recovery in some portion of children with autism, so if your team is using SKILLS and your team is doing professional-quality ABA treatment, starting before the age of 5, with 30 or more hours per week of therapy, continuing for 2 or more years, your child may have a chance at recovery.
Any scientists listening might be wondering about the research. Every single published study on the outcomes of behavioral intervention for children with autism, that included a control group, that started treatment before the age of 5, implemented more than 25 hours per week of treatment, and that continued treatment for 2 or more years, reported that at least some of their participants achieved functioning in the average range on at least some of their outcome measures. In most of these studies, some percentage of the children achieved average functioning on all of the outcomes. More scientifically rigorous research is still needed on recovery from autism, and as we are writing this right now, it is currently underway here at CARD and at a few other centers, but the evidence currently available already strongly supports recovery.
Some people acknowledge that children with autism may be able to achieve completely non-impaired functioning but they must still have autism. But if the child no longer qualifies for the diagnosis and does not have any challenges left for us to treat (other than any other typically developing child might), then why do we still need to burden him with the label? There may well be something still amiss biologically or physiologically, but if there is no longer any clinically significant impairment in language, socialization, and stereotyped behavior, then the child no longer has autism, they have impaired physiology .
It’s also important to note that the majority of children with autism today will not recover, even if they receive the best possible treatment. Recovery is not the only meaningful outcome of treatment. The point of ABA treatment is to maximize the development of each child, so that each child reaches his or her highest possible learning potential, and for some children the highest possible potential is recovery from autism. Some of the children we have recovered are now living on their own and succeeding in college or in mainstream jobs. For children who do not recover, maximizing learning potential means learning skills that will make their day-to-day life more independent, fulfilling, and dignified. All outcomes are meaningful and legitimate, so long as each child with autism is given their best possible chance to learn the most they can, using scientifically proven treatment approaches.
Another issue that needs to be discussed is that, by recovering someone from autism, we are not removing their unique perspectives on life or their unique personality. We are simply teaching skills, we are giving tools, we are opening up options. It is then the child’s choice as to whether or not he wants to take them. We are not trying to make anyone “normal,” we don’t even believe in normal. We believe in learning skills that make you stronger and more independent.
Unfortunately right now, the research has not been done yet to allow us to predict exactly who will recover and who won’t. As long as we are able to start intensive treatment, and by intensive I mean 30 or more hours per week, before the age of 5 or so, we are shooting for recovery with every child. We know we won’t achieve it in every case, but the worst possible outcome is that the child learns lots of useful life skills. The fact that most children will still not recover from autism doesn’t mean they don’t deserve a shot at getting the best treatment possible and learning the most they can.
Pass the word along. Recovery is possible.