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Questions About Children Who Beat Autism

August 12, 2014

It’s interesting that all the anecdotes of recovered Autism Spectrum Disorder (ASD) individuals are male. It’s not surprising, given the gender gap in ASD diagnoses, but it does make me wonder what the “recovery rate” is for each gender. LAUREN, posted on nytimes.com.

The most recent data from the federal C.D.C. indicate that autism diagnosis is nearly five times as common in boys as in girls, though keep in mind that the data are not based on a nationally representative sample; the information is collected in 11 communities in the United States. No nationally representative study yet exists.

Fein’s study had this gender breakdown: Of the children who no longer were diagnosed as autistic, 27 were male and seven were female.

In Lord’s study, all eight participants who later lost their autism diagnosis were male. (Her study followed 85 children who were diagnosed with autism at age 2; of those, 80 percent were male.)

But, it’s impossible to accurately infer from those results which gender is more likely to lose autism’s core symptoms. Among the many reasons that’s so: (1) These studies aren’t nationally representative (nor was that their aim). (2) They are both small sample sizes. (3) Even if they somehow were large, nationally representative samples of those who lost autism’s core symptoms, any calculation of that gender ratio would have to be contextualized with the gender ratio of autism’s prevalence, and remember, that’s not a figure we reliably know.

So the short answer is, it’s not possible to answer your question with the information available at this time.

Just because someone has learned coping skills, is it fair to remove the “autistic” label? Autism is diagnosed solely by behavioral cues, and if a patient no longer exhibits those cues, you cannot make the diagnosis; however, the autistic behavior is indicative of non-neurotypical brain wiring. In other words, changing the child’s behavior to mimic that of neurotypical children does not necessarily change the underlying biology. I ask because I am 40 and haven’t “outgrown” autism. I just pass for normal until people get to know me intimately. JENNIFER MEYER, posted on Facebook.

The scientists I talked to seemed pretty convinced that if behavior changes, the brain changes, because it’s the brain that controls behavior. That doesn’t, however, necessarily mean that brain function and structure become identical to that of a child who never had autism. Scientists don’t know whether someone who loses autism’s core symptoms produces neurotypical behavior by activating the same brain systems that typically developing children use or if their brains create new systems to work around the challenges of their autistic brains.

It certainly does seem that some people who lose autism’s core symptoms retain some of the strengths they had when they still met the diagnostic criteria. Carmine DiFlorio, one of the subjects of my story, and his parents believe that his musical talents (and the incredible joy music gives him) are very connected to his autism. Mark Macluskie’s parents credit autism for his continued intense focus on mechanical wizardry.

What is most critical is to get a better understanding of what is happening and why those young children who are developing normally and then regress, lose language learning ability, bond and then unbond. This appears to me to be a brain disease. Is nothing really visible on M.R.I. scans of these patients? DR. LZC, posted on nytimes.com

I wondered the same thing about what M.R.I.’s showed. During my reporting, I asked the research teams if they had E.E.G.’s, M.R.I.’s or functional M.R.I.’s of the children from when the children were still diagnosed with autism, and also if they had conducted the same brain tests after they’d been deemed no longer autistic. Unfortunately, the research teams had no brain scans to compare before and after.

Fein did get M.R.I.’s of some of the children after they lost their autism diagnosis, but to date she hasn’t published anything about them. Even once she does, you can’t draw sweeping conclusions from so few study participants, though the results may certainly suggest interesting future avenues for study.

It seems to me that with no “before” scans to compare with, you can’t know for sure if neurotypical brain function is connected to the loss of autism’s core symptoms or if that child’s brain was different from “typical” autistic brains all along. It certainly would be interesting to know if, even after those children lost autism’s core symptoms, their brains retained some of the patterns evident in children who still have autism.

Why is applied behavioral analysis the only referenced therapy in this article? SIMONE MACDONALD GONZALEZ-CARREON, posted on Facebook:

The two studies I wrote about weren’t designed to test one therapy against another. They were focused on identifying whether the phenomenon of having autism and then not having autism actually occurs.

However, to the extent the researchers examined interventions, Fein’s study looked at the percent of “optimal outcome” children who received applied behavioral analysis, speech, O.T., P.T., developmental therapy, sensory-integration therapy, casein-free-gluten-free diet or dietary supplements. She then compared that with how many in the high-functioning autistic group received those therapies. Applied behavioral analysis was the one therapy that was far more commonly used by children who subsequently lost their diagnosis — though not all of those children got applied behavioral analysis. Lord’s study, however, found that applied behavioral analysis was not common among those who later lost autism symptoms; in fact, it was more prevalent among those who remained autistic.

But applied behavioral analysis is a very common treatment, be it Lovaas’ model (without the aversives) or other approaches that borrow from his model. All of the families whose children got applied behavioral analysis credit it for their child’s loss of core symptoms, though that doesn’t prove that it was the cause.

Still, it is widely considered the most evidence-supported mode of treatment.

Autism seems to be a rather gender-specific disease; it seems the vast majority of people diagnosed with autism are male. Autism is defined by having impaired social interaction. Women hold being social in high regard. The vast majority of professional and personal caretakers in our society are women. Is it possible that we are simply seeing these young boys as broken girls who need to be fixed? TINA PHILLIPS, posted on nytimes.com

That’s a theory I hadn’t heard before! I’m no scientist, but your theory doesn’t seem to address the fact that the vast majority of boys don’t have autism. Moreover, the children diagnosed with autism are not just socially awkward or lousy at being girls. Autism involves a lot more than that. Here is a link to the American Psychiatric Association’s Diagnostic and Statistical Manual for their criteria on what constitutes autism.

(Source: 6thfloor.blogs.nytimes.com)


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