ruth padawer

Yesterday, the New York Times ran a longread by Ruth Padawer titled “The Kids Who Beat Autism.”  On at least two dimensions, it’s stunningly irresponsible.

First off, Padawer’s claims outstrip the evidence. To explain why, we need some context on the state of autism research: Psychologists unanimously agree that is is useful to apply the term “autism” to a condition occurring in between 1 in 1,000 to 1 in 68 people. This condition is distinguished by difficulties in socialization and communication, and intense interest in a narrow range of topics. These traits are often—but not necessarily—accompanied by extreme sensory sensitivities, repetitive self-stimulating activities (“stimming”), and a variety of digestive troubles. All these traits occur in varying intensities from case to case, so it is conceptualized as a “spectrum”.

There’s wide agreement among researchers that there is a strong genetic to the condition, which phenotypically cashes out in differences in brain structure or chemistry. But no one knows what specific genes or environmental influences causes autism, and what neurophysiological differences define ASD. Researchers have of course catalogued statistically prevalent differences between autistic and neurotypical brains. However, there’s no well-entrenched consensus on which differences are decisively significant.

Therefore, the only real diagnoses for ASD we have are behavioral questionnaires, and to a lesser extent, cognitive testing. Consequentially, if a non-ASD condition with a different etiology and prognosis were to cause autistic-like behaviors, we would have no way of reliably distinguishing it from ASD. Therefore, we can’t tell with any certainty if cases of regressive autism and “cured” autism are, in fact, autism.

There’s no disputing the fact that some people have behaved in manners resembling autism, and then stopped doing this. But one can dispute that these people had ASD as it is currently understood.

However, Padawer simply assumes that all the cases of “cured” autism she profiles were noncontroversial cases of ASD. She acknowledges only in passing the possibility that diagnoses of “autism” might scoop up distinct conditions.

In short, we can’t say with any degree of certainty that anyone has ever stopped being autistic. Padawer’s piece has gone beyond the facts as early as the headline.

Secondly, for the foreseeable future, claiming that autism is “curable” can only make the lives of autistic people and their loved ones worse.

Major autism “advocacy” organizations like Autism Speaks devote substantial funds and energies to finding “cures” rather than studying, developing, and promoting interventions which make the lives of people on the spectrum better. Whereas there are relatively robust networks of support and occupational training for persons with better-understood developmental disorders like Down syndrome, there are few resources for the cultivation of autistic people’s talents and independence.

By writing a piece claiming autism can be cured in a respectable outlet like the New York Times, Padawer will reinforce and energize the efforts of those who prioritize a “cure” over education and accommodations for autistics. It’s hard to imagine her piece having any effect other than re-emboldening parents who think they are doing the best for their children when they seek out worthless and sometimes harmful “therapies.” Padawer mentions that desperate parents of youth on the spectrum have turned to “vitamin shots, nutritional supplements, detoxifiers, special diets, pressurized rooms filled with pure oxygen and even chelation.” She could have also mentioned the beatings, electrocutions, and bleach enemas autistic children have been subjected to by caretakers hoping to “fix” them.

Even putting all these facts-on-the-ground practicalities aside, there are also in-principle objections. Many autistic adults are offended by the very idea of a cure. Firstly, cure-talk reinforces autistics’ perception that their loved ones see them as burdens, or worse, as someone with something intrinsically wrong with them. Many ASD adults don’t see ASD as a cluster of symptoms that can be abstracted from their personality, but as an indispensable part of their identity. Though no one is more aware of the challenges of autism than autistics themselves, they can still glory in their routines and the deepness of the expertise they cultivate. Just as many disowned and marginalized gays would not change their orientation if given a magical chance, many underemployed and miserable autistics don’t want to stop being autistic. 

Padawer gives only token acknowledgement to this perspective. She only quotes one person articulating this perspective [Ari Ne’eman, president of the Autistic Self Advocacy Network], but then immediately undercuts his remarks with comments from a researcher discussing how “cured” autistics use fewer antidepressants than “uncured” ones.  

Padawer adds her own hedge to these remarks, writing, “Of course, none of this means that people who have autism should be pressed to become nonautistic…” However, the entire rest of the article—mostly a series of profiles of kids’ lives got awesome after they stopped their weird, scary autistic behaviors—makes this qualifier ring hollow.

This piece gives aid and comfort to the worst elements of autism “advocacy”. But the real tragedy is that these elements are the mainstream.

These days, flouting gender conventions extends even to baby naming: first names that were once unambiguously masculine are now given to girls. The shift, however, almost never goes the other way. That’s because girls gain status by moving into ‘boy’ space, while boys are tainted by the slightest whiff of femininity. ‘There’s a lot more privilege to being a man in our society,’ says Diane Ehrensaft, a psychologist at the University of California, who supports allowing children to be what she calls gender creative. ‘When a boy wants to act like a girl, it subconsciously shakes our foundation, because why would someone want to be the lesser gender?’