The New York Times reported last week that approximately ten percent of autistic children lose their diagnoses, but no one seems particularly happy about it.
Neurodiversity activists predictably slammed the definition of “optimal outcome” as “loss of diagnosis.” “Autism isn’t an illness in need of a cure,” Ari Ne’eman, the president of the Autistic Self Advocacy Network said in the Times piece, calling attempts to “rewire [the] brain” to make it less autistic “unethical.”
Parents of low-functioning kids were also bitter, but for different reasons. They wondered why well-intentioned friends and family members kept forwarding them links to the Times article, despite the fact that not one autistic child with intellectual disability recovered in either of the two studies referenced (in fact, one study only considered children with at least an average IQ, as if granting that those below were beyond hope). It was too heartbreaking for these parents to check their email or Facebook feeds during their brief breaks from divining the wants of their nonverbal children, managing their tantrums, sometimes changing their diapers, only to be faced with these naïve messages, often accompanied by encouraging emoticons.
I’ve already articulated my frustration with the neurodiversity movement’s persistent whitewashing of the profound disability suffered by tens of thousands of autistic individuals, so I won’t rehash that again. I’ll just add that self-advocates’ horror at attempts to “normalize” autistic children like the young people featured in the article is belied by the behaviors of the movement’s most successful members. I’ve attended government meetings and watched interviews with prominent self-advocates. No one is flapping his hands, wandering around the room, or using a picture board to communicate. These men, in fact, are all bright and articulate, with obvious competency at what researchers call “adaptive behaviors,” which include communication, daily living, socialization and motor skills. In other words, they themselves meet the criteria for what is called “very positive outcome” in one study and “optimal outcome” in the other – which is why their continued hostility towards parents who only want the same successful, independent lives for their own children continues to baffle me.
But for parents like me, parents of children unlikely to ever lose their diagnoses, these are the reasons I was happy to read the article and the studies it featured anyway:
- Deborah Fein’s study confirmed earlier findings that alternative therapies, like diet and supplements, had no bearing on whether kids achieved “optimal outcome.” So I can stop wondering whether our lives would be different if I had just tried TSO, or the Feingold diet, or probiotics. And that’s no small relief. If anything characterized our first few years after Jonah’s diagnosis, it was my constant panic that Jonah’s miracle was out there but that we just hadn’t found it yet.
- I no longer feel like such a sucker for trying those treatments we did experiment with after reading books and articles written by parents claiming their autistic children were cured by diet, hyperbaric oxygen therapy, auditory integration training, etc. And I no longer feel angry and manipulated. For so long, I had this image in my mind of parents of autistic children, myself included, as minnows, constantly being circled and picked off by – if I’m completely honest here – that terrifying barracuda that ate Nemo’s mom. I came to suspect that every treatment was a scam, and that those who touted them were exploiting my deepest hopes and fears for my son. Now that researchers have confirmed that a significant number of autistic children legitimately lose their diagnoses, I’ve come to believe that those kids really did recover – probably not because of the alternative treatments their parents credited, but I can’t really blame them for confusing correlation with causation. In fact, neither research team was able to identify exactly why some children achieved “optimal outcome” while others didn’t. Fein’s study reported earlier, and more intensive, behavior interventions (primarily ABA) in the “optimal outcome” group, but acknowledged that “neither particular types of intervention nor the number of hours of early intervention is sufficient to predict outcome.” In Catherine Lord’s study, only 25% of the kids who achieved “very positive outcomes” received ABA. What emerged from both studies is that the kids with the less severe symptoms as toddlers – those who suffered from neither mood disruption nor intellectual disability – were most likely to experience the best outcomes.
- Both studies confirmed something I never doubted: that developing treatments to help autistic children and eventually, hopefully, to cure them is the right goal, one that maximizes the quality of life of these children. Far from being oppressed by early treatment or parental expectations, as neurodiversity activists believe, Fein’s study found that kids in the “optimal outcome” group were far less likely to be treated for depression, anxiety and psychosis than their autistic peers. And none of the young people profiled in the Times piece expressed any regret. Obviously, there could have been cherry-picking on the part of the reporter, Ruth Padawer, but I doubt it. Why would these kids regret losing their diagnoses and the debilitating behaviors that characterize it? They are now going to prestigious universities and preparing for fascinating careers. And most importantly, they’ve maintained their quirky talents and interests: one is a musical genius, another competes in international robotics competitions. Autism is, after all, a disorder defined primarily by its deficits: in communication, socialization, and behavior. It never made sense to me why self-advocates believe that everything important about a person’s personality would disappear along with the autism diagnosis.
- Although there are few immediately helpful takeaways from these studies for the parents of the 40% of autistic children that are also intellectually disabled – never mind the 20% that are completely nonverbal, or the 50% that exhibit aggressive behaviors – who knows where this research might lead in the future? Perhaps by comparing those kids with “optimal outcomes” to those who remained autistic, albeit highly functioning, scientists might discover different types of autism that respond best to different treatments. And I can’t help but hope that enhanced understanding of the incredible neuroplasticity of the human brain will yield new therapies in the future.
- Finally, and most basically, I’m happy whenever obstacles are overcome and suffering is alleviated. Or, I should say, I’m trying (and, for the most part, succeeding) really hard to be happy, to put aside my jealousy, and celebrate the accomplishments of these amazing kids. Because whenever children expand their opportunities, act independently in the world, and achieve their dreams, it is a victory for all of us.