Written by Randall W. Bachman, Autism Recovery Foundation Chairperson

Recently one of our colleagues was in conversation with a friend at a social gathering.  He noted that he had recently been engaged by our foundation to help promote our mission.  The reaction he got was:  “Recovery?  You can’t recover from autism.”

Such is the reaction from not only laypersons, but some professionals as well.  I believe the reaction is based on the assumption that autism is a physiological condition caused by some underlying genetic disorder like Down’s Syndrome, and therefore it can’t be “cured”.  I also believe that professionals balk at the word recovery because they do not want to give parents false hope that their child’s condition can be overcome.

I understand these reactions.  When asked to join the Autism Recovery Foundation Board I struggled as well with the “R” word and wondered if it was intentionally provocative and misleading.  However, after serving on the Board in recent years, after reading a great deal of research, and after interacting with professionals who provide early intervention and treatment, I’ve concluded that recovery is indeed possible for some, and improvement in functioning is possible for most.

Let’s step back and look at the word recovery.  The Merriam-Webster dictionary has the following definitions: “…the act, process, or an instance of recovering…the process of combating a disorder (as alcoholism) or a real or perceived problem… The act of regaining or returning toward a normal or healthy state.”

Note the dynamic feature of the word recovery.  It is more about a process than an end point.  Another aspect is the return toward a normal or healthy state.  Many parents of children with autism will tell you that their child appeared to be developmentally normal in infancy, and then became symptomatic as a toddler. An example is Bill and Linda Wright’s grandson.  Bill and Linda are the founders of Autism Speaks, a national nonprofit promoting research and effective treatment for autism.  Their grandson appeared to be developmentally normal, then withdrew and exhibited the signs of autism.

Merriam-Webster’s reference to alcoholism is instructive.  People who have gained sobriety are said to be “in recovery”.  The implication is that whatever the underlying condition was that led them to alcoholism, through treatment, self-help, or whatever method they employed to gain sobriety they have been returned to a more normal, healthy state.  Because it is generally recognized that alcoholism is a progressive disease that develops over time, and that they in their younger years at some point were sober, the word recovery is salient to their condition.  Thus, if we were to start another ARF–Alcoholism Recovery Foundation—I believe there would be little or no controversy about the word recovery.

Researchers for years have been studying the pre-determinants of alcoholism looking for a genetic propensity that would create the condition.  Autism researchers are doing the same.  With some exceptions such as fragile-X syndrome, a genetic test that would reveal a propensity towards autism has not been discovered. Like alcoholism, and many other diseases, autism appears to be a manifestation of a complex interplay between genetic, developmental, and environmental factors.  Some professionals believe that autism is no single disease, but rather many different diseases that produce the same or similar conditions.

Even with conditions that have a clear genetic basis, like Down’s Syndrome, the question remains how do we help people achieve their full potential?  In years past parents who gave birth to Down’s Syndrome babies were advised to place them in institutions away from home because it was believed that there was no hope for them to live in mainstream society and most would die before reaching adulthood.  Now we know that through programs employing behavioral principles, community support programs, advocacy from associations like the ARC, and changes in the professional and societal attitudes for the developmentally disabled that many can live healthy, productive lives, and live with support in the community.

The beauty of the application of behavioral principles in the intervention of a disease or syndrome is the efficacy of the treatment regardless of the cause.  While not all conditions can be overcome totally by the application of behavioral principles, in most cases improvements in functioning can be achieved.  If we set aside the notion that recovery is an end state, and that recovery is a process along a continuum leading toward higher functioning, then we can see that the notion of recovery can indeed have a place in discussions of autism.

The notion of recovery is more than an academic exercise in re-framing the word itself.  There are numerous examples of children who have received intensive early intervention behavior therapy who are now mainstreamed in schools with their typical peers.  There are more examples of children who require minimal support from special education as a result of early intervention.  Even for the most severely impaired children, there are many examples of children achieving a higher level of functioning, improvements in communication, behavior and social interaction as a result of early intervention and the application of behavioral principles.  These examples are too numerous to be attributed to spontaneous remission or children simply “growing out of it.”

One example of a person overcoming autism does not “prove” that recovery is possible for many.  Yet one person who has recovered challenges the notion that recovery is not possible.  For an example of someone who recovered who received intensive early intervention behavior therapy as a young child, see the website of Joe Mohs:

http://joeslivingproof.com/

How many Joe Mohs’ does it take to conclude that intensive early intervention behavior therapy helps those afflicted with autism achieve a higher level of functioning, is medically necessary, and should be the standard of care?  What success rate is needed before we fully support behavioral therapies that have been shown to be effective?  As a society we pay without question for many medical procedures that have a lower chance of success.  Joe Mohs is not an anomaly.  There are many Joe Mohs’ out there, and their number is growing.

At the Autism Recovery Foundation we believe that every child with autism has a right to effective treatment that can lead to recovery or substantially improved functioning, and that every family with a child with autism has a right to early intervention and treatment with evidence-based practices.  We promote cost-effective treatments that reduce or eliminate the need for long-term care, institutionalization, the need for special education services, and the disruption of the family.

There are those who will criticize us for advocating behavior modification as the only method for addressing autism.  It is true that we believe that the empirical evidence supports the efficacy of the use of behavioral principles and practices in addressing autism.  While there are variations in approaches and settings, we believe that programs that intervene early with sufficient intensity and use sound behavioral principles are most likely to result in success.  We also believe in a dynamic process where interventions are ever improving based on the application of scientific rigor.  If someone develops a pill or a medical procedure without deleterious side affects that assists in recovery, we’re all for that as well.  In the meantime we support the proven application of behavioral principles in addressing autism.

We’re all recovering from something.  Life is dynamic, and human beings grow and develop throughout their life-span, hopefully in increasingly adaptive ways.  Recovery is an aspirational goal that provides hope for families with children with autism.  While we do not have all the answers, we do have the means and the resources to help them meet the challenges their children present and help them improve in functioning and live in society.  If we envision recovery as a verb, not a noun, we can appreciate the power of an ongoing process of growth and development for all.