Details about the potentially “recovered” autistic kids in the National Survey of Children’s Health

27 Dec

I recently wrote about data from the National Surevey of Children’s Health. In specific, I explored the question of just how many of those kids were identified as autistic at some time in the past and are currently not identified as autistic. Keep in mind the limitations of the NSCH, inlcuding (1) it’s a survey not a direct examination of kids, (2) similar to (1), this is all parent-reported data, (3) these are raw data, not corrected for any socio-economic factors.

I posed the question Are 20-30% of autistic children recovering? as this is how I’ve heard the results of the survey framed. Kid was once identified as possibly autistic/kid is not currently identified as autistic/therefore kid recovered from autism. While 17% of the kids in the survey “lost” their autism label, the parents report that most of these kids were never autistic to begin with.

In other words, the fraction of kids who might have recovered from autism is small. Much smaller than many people have been thinking after the 2007 NSCH data were released. Back then, David Kirby discussed the new prevalence numbers in his usual manner. For those who are not familiar with his “usual manner”, David Kirby was famous for “just asking questions” which lead the reader to believe that vaccines cause autism. He retains plausible deniability (I never said that vaccines cause autism, I just posed the question. Over and over. With cherry picked data to support the conclusion)

Back then Mr. Kirby wrote:

Among boys, for every 260-per-10,000 male children originally identified as having an ASD, 90 of them (34.6%) reportedly do not have the diagnosis now.

and

The percentage of girls who apparently lost their original label was 44.5%.

Followed later by:

Another item that will surely spark fiery debate is the reason why so many children previously indentified with ASD are currently not holding that diagnosis.

There are three main possible explanations:

1) Many children never had an ASD to begin with, and were simply “mislabled.”

2) Some children naturally “recovered” from ASD on their own without treatment, (though Lee Grossman and many others told me they have never seen this happen).

3) Interventions including behavioral therapy, dietary changes and biomedical treatments actually work, and it is possible to “recover” a child from the grips of ASD

Well, there’s never been a “fiery debate”. But he did implant the question in the minds of people and it has stuck. I’ve heard people claim a high “recovery” rate. We can now answer some of Mr. Kirby’s questions. We now know that, yes, many of these children never had an ASD to begin with. Some children went from having an autism label to not and the parents did not attribute the change to treatment. A small fraction (about 3%) of parents attribute the “loss” of the autism label to treatment, but we don’t know what treatments they credit. (Note how Mr. Kirby lumps dietary changes and biomed together with ABA, lending alternative medicine some credibility by association).

So, what about those kids whose parents reported some treatment(s) resulted in a change from actually autistic in the past to not autistic now. What can we say about those kids? Do they have any other challenges or diagnoses? What we can say is that a large fraction still have some diagnosis or parental concern.

Let’s go through some of the questions in the survey:

Recall that 2041 parents answered yes to Has a doctor or other health care provider ever told you that [S.C.] had Autism, Asperger’s Disorder, pervasive developmental disorder, or other autism spectrum disorder? (question K2Q35A)

Some of these kids were reported by parents to no longer have an autism label. And some of those parents attributed the change to treatment. How many one might ask? 69 answered yes to question K2Q3F_1: I am going to read a list of reasons why [S.C.] may no longer have autism or autism spectrum disorder. For each reason, please tell me if it applies to [S.C.]. Treatment helped the condition go away.

69/2041=3.4%.

So we are dealing with small numbers here, but there are more data to explore in the survey. In specific, parents were asked questions about diagnoses other than autism.

Here are a few examples of the conditions those 69 kids still have:

23 parents answered yes to “Does [S.C.] currently have speech or other language problems”. For reference, 23/69=33%

18 parents answered yes to “Does [S.C.] currently have a learning disability?”. 18/69 is 26%.

6 parents answered yes to “Does [S.C.] currently have intellectual disability or mental retardation?”

18 parents answered yes to “Does [S.C.] currently have ADD or ADHD?”

12 parents answered yes to “Does [S.C.] currently have anxiety problems?”

10 parents answered yes to “Does [S.C.] currently have behavioral or conduct problems?”

5 parents answered yes to “Does [S.C.] currently have epilepsy or seizure disorder?”

25 parents answered yes to “During the past 12 months, has [S.C.] received any treatment or counseling from a mental health professional?”

Note that parents can answer yes to more than one question, so the total adds up to more than 69.

Kids go from having an autism label to not having an autism label. The fraction seems small, but it’s there. But not having an autism label is not the same thing at all as not having any label or challenges.

I don’t write this to throw cold water on those excited by autism recovery. But I do think we need to quote numbers that are as accurate as we can. The National Survey of Children’s Health points to any autism recovery being a small fraction of the autistic population (3% or less) and, of those, other diagnoses, disabilities and challenges are often present.


By Matt Carey

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6 Responses to “Details about the potentially “recovered” autistic kids in the National Survey of Children’s Health”

  1. Paula M Green December 28, 2013 at 08:46 #

    Good article and well researched about the researchers Matt. I only wish that your links would be posted to the National Autism Society as it is only parents like myself that read a variety of posts as well as undertake their own research to achieve an objective balanced view of ASD and its current research. I find it personally a nightmare to be challenged by so called professionals” who in the end really know less than myself about this subject – especially as they only get a snap shot in time with my son (like taking a car for an MOT). Professionals all seem to have their own personal bias these days and like fashion trends they tend to jump on the bandwagon. Did you know that you could possibly get funded to do your research on the researchers Matt?

  2. chavisory December 28, 2013 at 13:59 #

    “But not having an autism label is not the same thing at all as not having any label or challenges.”

    Not having an autism label is also not the same as actually not having autism. And my huge fear for these kids is that their still-present autism-related challenges have just been re-labeled, according to a faulty understanding of what autism is in the first place, in order for the adults in their lives to get to play pretend that their kids don’t have autism anymore. And what that’s likely to mean for their ability to get things like communication, sensory, and social challenges taken seriously as they grow up.

    So I will absolutely throw cold water on those excited by the prospect of recovery from autism.

  3. Jamie E. Glenn January 7, 2014 at 11:46 #

    You are not alone, as an individual or as a couple, in facing the risks of what seems like a genetic lottery. Recent research now confirms that the risk of having a child who will be eventually diagnosed on the autistic spectrum is one in 150. In some parts of the country, it is close to one in 100. Even more sobering is that the chances of having a second child with autism are over 5%. While this is nothing to take lightly, still the chances of having a typical child are over 90%. This makes this a personal decision that will shape the rest of your life and your family’s life.

    • Lara Lohne January 10, 2014 at 19:29 #

      Autism isn’t scary! There isn’t any more ‘risk’ of having an autistic child than having a child with Downs Syndrome. What’s more, who cares? Any child is a gift. A special needs child even more so because that special little person will open their parent’s eyes to a world that was never thought possible! Stop the gloom and doom regarding autism! It’s old and tired and completely irrelevent!

  4. BA January 14, 2014 at 01:58 #

    Just because a child who receives EIBI “loses the diagnosis” does not mean they are not the same person they were before (seen many such cases over 20+ years). They just don’t meet measurement criteria based on testing (at least in the cases I’m referring to). And, by the way, the person they are is not the target of treatment. That would be independent functioning in their community.

  5. Kurtis S. Newton January 16, 2014 at 09:55 #

    It’s easy for parents of children with autism to get wrapped up in their child’s challenges and deficits. After all, the entire American system of special education and disability care is focused on challenges and deficits. It takes a strong parent to take time away from those concerns to notice, delight in, and celebrate an autistic child’s abilities and achievements – especially when your child is not a “savant” whose abilities amaze others. If you noticed and praised your child for asking a question, waiting patiently, responding appropriately, or otherwise doing something that is difficult for him, you’re doing a great job.

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