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

16 Apr

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

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

  1. farmwifetwo April 16, 2013 at 13:25 #

    Why not?? Because yes, some social issues may still remain but there is no reason why they cannot function in the real world. They no longer qualify for services or funding. I’m not going to allow my 13yr old to go around telling people he’s “autistic” and implying being disabled when he is not. We plan on a re-dx request at our next meds meeting in May. Sorry, he’s not autistic… his brother is… and we were told so a year ago and it’s time to make the change to social communication disorder or just good old narcissistic behaviour.

    • Ettina September 2, 2016 at 18:45 #

      Narcissistic behavior is completely different from autism. And if you think your son isn’t disabled, why would you think he qualifies for SCD or narcissism? Those are both disabilities as well.

  2. Brian Deer April 16, 2013 at 14:00 #

    For a story by me in The Sunday Times last weekend, we had a lengthy interview with a mother in Swansea, who had sued Merck and was very agitated over the vaccine damage issue.

    We had to drop the material because the next day there was a family punch-up, with her son, now 19, pointing out that he was not vaccine damaged and didn’t have autism.

  3. futuredave5 April 16, 2013 at 19:03 #

    I can see where most parents might suppose this is just a matter of terminology. Autism is a condition that is defined (for now) exclusively by its symptoms. If you no longer have the symptoms, then you are no longer autistic, by definition.

    If a child was autistic from birth, but by age ten has overcome his symptoms, then doctors might say that “he has lost his diagnosis.” It would be unscientific, or worse, to say he was never autistic to start with.

    Eventually, scientists will identify different types of autism, and might very easily identify a certain type that, with the proper work and therpies, a child can “grow out of.”

    Personally, I tend to believe that some children, with certain forms of autism, are able to develop really good coping mechanisms, and that they lose their diagnosis because we can no longer recognize the symptoms. The combination of genes that caused their brain to develop differently is still there, but they have adjusted their behavior so that no one can tell.

    Similarly, I know an accountant who is colorblind, but has adjusted his behaviors so that no one can tell. What if we had no good tests for color-blindness?

    • Sullivan (Matt Carey) April 16, 2013 at 20:02 #

      Similar to what you write later in your comment–Autism is diagnosed by symptoms, but not defined by symptoms. It’s a fine point but an important one. For example, there is a case of a child who developed autism-like symptoms after age 10 (as I recall). That child was not considered autistic.

      “The combination of genes that caused their brain to develop differently is still there, but they have adjusted their behavior so that no one can tell. ”

      The structure of the brain may still be different as well.

      If I act autistic, I am not autistic. Why do we say that if an autistic acts not autistic, he/she is no longer autistic? Also, a lot of people assume that this is a simple dichotomy: autistic or typical. As demonstrated in the recent “optimal outcomes” study, many people declared no longer autistic are not “typical”.

      • Dave April 17, 2013 at 03:06 #

        There are a whole series of questions here. If someone starts repetitive behaviors, loses language skills, and loses social abilities, why would they not be considered autistic? If it is because of the age of onset, then isn’t that a different symptom?

        Children who lose social and language skills due to seizures are not considered “autistic”, but isn’t that because their symptoms are different? Children with childhood disintegrative disorder are not considered autistic because their symptoms are different over the course of time. On any given day, the symptoms might be similar, but wouldn’t a complete list of symptoms includes whether or not the skill is declining?

        I understand the difference between diagnosis and definition, but I can’t think of a definition of autism that does not include a list of symptoms. We strongly suspect that it has to do with gene expression, but so does everything from blue eyes to bad hair.

        I agree with you that we have to draw a line of distinction between symptoms and “observed” symptoms. Many autistic children learn to “act normal” at an early age, and some get very good at it. It does not mean they are no longer autistic. It just means that they have the ability to develop new habits.

        I also agree that there are hundreds of shades of gray (or for those of you in the UK, “grey”) in between “ASD” and “just and average guy with a few quirks”. This is all the more reason to suspect that certain forms of autism might be “curable”.

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