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Autism reported at 1 in 50, but some parents no longer report their child is autistic. Can we say why?

Posted Apr 15 2013 9:20pm

A recent study reported that 1 in 50 children in the U.S. are autistic. This is based on parent report via a telephone survey, the National Survey of Children’s Health . The recent survey was taken in 2011-12. The last time a NSCH was performed was in 2007, and when those results were released in 2009 as Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007 , a great deal of attention was focused primarily on two outcomes. First, the estimated parent-reported prevalence of ASD was about 1.1%. Second, about 0.5% of parents reported that they had been told that their child was autistic at some time in the past, but that their child was no longer autistic.

The report that came out recently presented a new parent-reported prevalence estimate: 1 in 50. ( Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012 ). That report did not go into details about those who were no longer reported as autistic by their parents. The question was asked–as were many follow up questions.

The question and some of the responses are:

Does [the child] currently have autism or autism spectrum disorder?

No: 0.36%
yes: 1.70%
Don’t know: 0.08%

So, out of a total of a raw (uncorrected) 2.1% of parents who responded that they were told at some point that their child was autistic at some point, 0.36% said their child was no longer autistic. That’s comparable to the previous report in absolute terms (about 0.4%).

As already noted, they asked follow up questions to those who answered “no”. They asked directly “To the best of your knowledge, did [your child] ever have autism or autism spectrum disorder?”.

Of those 0.36% whose child had “lost” their diagnosis at some point, 0.24% of parents reported “No”. I.e. the parents reported that they were told that their child was autistic in the past, but out of those parents 2/3 reported that their child was never autistic. A further 0.02% said they “don’t know” if their child was ever autistic.

to put another way, in the majority of cases where a parent-reported “ever had” been told their child was autistic, the same parent reported that the child was never autistic or they didn’t know.

If you are looking for evidence of recovery, 0.07% parents said that “Treatment helped the condition go away”. Another way to look at this: that’s 69 reports out of “treatment helped the condition go away” out of 2041 who reported they had ever been told their child was autistic (ASD). That’s about 3.4% of the total “ever had ASD” population.

The survey did not ask what specific therapies parents thought helped their children go from autistic to non-autistic. They did ask if, “The condition seemed to go away on its own.” (37 parents answered yes, about 1/2 of the number who said treatment helped). 81 parents reported “The behaviors or symptoms changed” 46 reported “A doctor or health care provider changed the diagnosis.”

Out of the total 0.36% (343) reports of no to “Does [the child] currently have autism or autism spectrum disorder?”, 102 said that “The diagnosis was given so that [the child] could receive needed services” and 122 said “You disagree with the doctor or other health provider about his or her opinion that [the child] had autism or autism spectrum disorder.”

The National Survey of Children’s Health is not just about autism. Which means they can’t spend all their time on autism questions. This time they have answered some of the questions raised by the idea that a sizable fraction of parents who are ever told their child is autistic later conclude their child is not. That fraction where parents report that treament was part of what “made the condition go away” is nonzero, but at about 3.4%, it is small enough that getting accurate information on what the parents thought was involved will be difficult. And it should be about 3-4 years before we get another NSCH survey report.

By Matt Carey

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