Editorial: Recovery from autism spectrum disorder (ASD) and the science of hope

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The Journal of Child Psychology and Psychiatry, and the field of developmental psychopathology in general, is keenly interested in stability and change, continuities and discontinuities, and prediction of outcome. This issue of the journal presents several articles that examine influences and predictors of child difficulties, such as avoidant behavior (Aktar et al., 20121) and antisocial behavior (Rhee et al., 2012). The effects of maternal depression and parental anxiety on child outcomes are also explored in this issue (Aktar et al., 2012; Hughes et al., 2012), as are the stability of symptoms in autism spectrum disorders (Corsello et al., 2012; Simonoff et al., 2012). All add to our understanding of the basic mechanisms and developmental pathways that underlie atypical child development. I call your attention to one article in particular that explores these concepts from a different angle and brings solid science to an understudied topic with a very controversial and contentious history, namely recovery from autism spectrum disorder (ASD).

Fein et al. (2012) recruited 34 children with clearly documented early histories of ASD who no longer met criteria for any autism spectrum diagnosis and, even further, had lost all symptoms of ASD. They compared these children to a group of typically developing participants and found no differences on multiple measures independent of the group classification process. They conclude, rather modestly, that these results “substantiate the possibility of optimal outcome,” demonstrating that some children with a clear early history and accurate diagnosis of ASD do indeed move into the entirely normal range of social and communication development later in childhood. Fein et al. use the word “recovery” only once in their paper, in reference to the findings and claims of another study. Their avoidance of the word is likely intentional. In fact, scientific papers have largely steered clear of this word, although it is alive and well on the Web. Why has recovery been such a provocative concept?

Lovaas (1987) was the first to use the term “recovery” in relation to ASD, describing the outcomes of children he had treated using the methods of applied behavior analysis. He did not provide an explicit definition of recovery, but described this group of children as having normal educational and intellectual functioning. His interpretation of this outcome as “recovery” was embraced wholeheartedly by some and scrutinized skeptically by others. It was pointed out that many children who meet criteria for ASD attain this level of functioning, but continue to display significant symptoms. Whether they had achieved “recovery” that fit with the Merriam-Webster definition of “regaining or returning to a normal or healthy state” was disputed. Researchers have generally avoided the term for fear of being viewed as naïve, idealistic, political, or simply just not good scientists. But recovery has remained a very powerful construct, one that many parents talk about and that has been the subject of much media and internet attention.

So why is this term, and this construct, so controversial? First, there is the concern about creating false hopes, leading parents to expect that recovery is the only successful outcome, and suggesting that any other outcome is a failure. The history of ASD, and indeed other disorders, is rife with examples of treatments that have touted cures and the promise of recovery to vulnerable families. The fact is that the word “recovery” is much more often used to market a treatment than to describe scientific findings. There are hundreds of blogs and websites telling tales of recovery from autism, listing the steps necessary for recovery, and offering treatments guaranteed to induce it.

But the second reason, I would suggest, that this word evokes strong reactions and has such a history of controversy is that, until now, it has not been clear, at the scientific level, that anything even close to recovery is possible. That changes with Fein et al.’s landmark article, clearly demonstrating the possibility of leaving behind the symptoms of ASD and emerging into a state of healthy functioning. Another recent study has demonstrated that early intensive intervention can alter the trajectory of brain development in young children with ASD, normalizing EEG activity so that it is indistinguishable from typically developing controls (Dawson et al., 2012). While these authors did not use the term “recovery” in relation to their findings either, public discourse on the topic was re-stimulated when this study was included among Time Magazine’s Top 10 Medical Breakthroughs of 2012 as providing “hope for reversing autism.”

Opening the dialogue on optimal outcomes and using the word “recovery” as a possible outcome must be done responsibly. It cannot detract attention from those who do not fall in this group, those who make less progress than hoped or achieve much smaller gains. How are these children different? How do child characteristics interact with treatment characteristics to foster the best outcomes? Broderick (2009) cautions against a “binary conceptualization of hope” (p. 270) that represents outcomes other than optimal ones as tragic and hopeless. She suggests that other optimal outcomes include emergence from isolation into engagement with the world and full participation in an ordinary life, even while retaining significant symptoms. Hope for recovery as the only hope would be not only shortsighted, it would be unethical.

But moving the possibility for recovery from ASD beyond public discourse and into scientific discourse is critical. No, recovery won’t be possible for everyone. No, recovery is not the only outcome worth fighting for. But it is high time we, as a scientific field, talked seriously about this as a possibility. As recent political events have demonstrated, hope can be a powerful tool. By demonstrating that there is solid science behind hope, we can add fuel to the urgency for very early diagnosis and intensive treatment of ASD.

So are we, as researchers and practitioners, at the stage that we can begin to use the “r” word? I would say yes. The science provided by Fein et al. and other recent articles suggest that such optimal outcomes are not simply initial misdiagnoses, nor are they just hyperbole. While many questions remain, the publication of Fein at al.’s article provides an initial scientific basis for talking openly of recovery as one possible outcome. We may not yet know how to get there, but now, we do know it is possible. The ultimate goal uniting both parents and professionals is to give each young child diagnosed with ASD the chance of this outcome, to know that no stone has gone unturned in the quest. We have exciting science ahead of us as we figure out the necessary ingredients of such outcomes.

Ancillary