Are 20-30% of autistic children recovering?

22 Dec

Some children are identified as autistic and later found to be non autistic. How much does this represent “recovery” from autism and how much does this represent something else? The question became very big after the 2007 National Survey of Children’s Health NSCH) results were published. The survey asked parents if they had ever been told by a health care provider that their child was autistic. (Note that this is different from confirming that a child actually had a diagnosis). They then asked if the child is still autistic and about 40% said, no, I was told my kid was autistic before but he/she is not autistic now.

This raised a lot of questions. Are these kids “recovering” from autism? Were they autistic to begin with? These and more questions just couldn’t be answered in by the data collected.

Consider the 2007 dataset.Here is a list of raw data from the 2007 NSCH. 1427 parents, or 1.56% of 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? ” [S.C] is the code for the child being discussed (selected child or something to that effect). (as with all figures in this article, click to enlarge).

NSCH 2007 ever told

Again, 1427 parents who said that some medical professional had stated the child was autistic in the past. Of these 459 answered no to “Does [S.C.] currently have Autism or ASD?”

NSCH 2007 still autistic

What’s going on there? Again, are these kids recovering? It’s a question certainly worth looking in to. The researchers felt it needed more attention and in the 2011/12 survey, discussed below, the researchers did ask more questions about autism and this subgroup.

The 2011-12 NCSH was published this past year (March of 2013). Once again they asked autism-related questions. The prevalence estimate from this survey was about 2% (1 in 50). In all, 2.13% 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? ” [S.C] is the code for the child being discussed (selected child or something to that effect).

NSCH ever told

They then asked, “Does [S.C.] currently have autism or autism spectrum disorder?” and 0.36% said no. I.e. out of the 2.13%, 1.7% said that, yes, they report that their child is autistic. After controlling for some factors, an estimated prevalence of 1 in 50 (2%) was reported.

NSCH still autistic

So, what about the 343 kids who were previously identified as autistic but who aren’t now. 343 kids are about 17% of all those ever identified as autistic. But in 2007, about 33% of parents answered “no” to “Does [S.C.] currently have autism or autism spectrum disorder?” I.e. the fraction of these potentially recovered kids went down by 1/2. In 4 years. If those kids are a measure of autism recovery, something dramatic is happening. As in, autism recovery rates are dropping fast.

Luckily we can test whether these kids do represent autism recovery. The authors of the NSCH added new questions to the 2011-12 survey. First they asked the obvious and important question “To the best of your knowledge, did [S.C.] ever have autism or autism spectrum disorder? ” 228 parents, 0.24% of the total population surveyed, said “no”. Only 97 said “yes”.

NSCH ever had.

That’s a lot of numbers, so let’s recap. In the 2011/12 survey:

95,677 parents were surveyed
2,041 answered that at some time they were told their child was autistic
343 of those said their child is not currently autistic
228 of those said that their child never was autistic.

Most of the kids who “lost” their autism label were never autistic to begin with.

Of the total kids in the “ever identified autistic” group, 97/2041 or about 5% said that they believed their child was autistic at one time in the past but was not in the present. Not 20%, not 30% as some have suggested. 5%. Still worth investigating, but not the high numbers I sometimes hear people quote.

The survey authors asked two follow up questions to the parents who reported that their child is not currently autistic but was in the past “Treatment helped the condition go away” and “The condition seemed to go away on its own”. For those looking for support that some therapy or combination of therapies is recovering kids: 69 parents out of 2043 reported that their kid lost the autism label and that treatment was the primary factor in the loss.

69/2043: we are talking about roughly 3%.

NSCH follow up

They also asked parents to comment on whether “The behaviors or symptoms changed” or “A doctor or health care provider changed the diagnosis”.

NSCH more questions

There are a few other questions on autism. For example, “With more information, the diagnosis was changed” (158 parents said yes). And “A doctor or health care provider changed the diagnosis” (46 parents said yes).

The last two autism questions are very important: “The diagnosis was given so that [S.C.] could receive needed services” and “You disagree with the doctor or other health provider about his or her opinion that [S.C.] had autism or autism spectrum disorder”. Out of the 343 children who “lost” their diagnoses, 102 (30%) parents say the diagnosis was given to obtain services. 122 (36%) of parents say they disagree with the original diagnosis.

The parents report that these kids were never autistic.

NSCH last autism questions

To summarize–Yes, a significant fraction of the children in this survey reported as once holding an autism label are not currently autistic. About 17%, to put a number on it. And, of that 17%, many have social factors involved in their “loss” of an autism diagnosis: incorrect diagnoses, the search for services, etc.. About 5% of autistic kids are reported by their parents as once really being autistic but not presently autistic. Are these kids a subgroup of actual recovery? It’s hard to tell.

One can drill down further into the data and get more insight about this group, but that will wait for another article.

The bottom line is simple, though. The National Survey of Children’s Health does not support the idea that 20-40% of autistic children are recovering. Maybe a few percent are, and with small numbers that will make studying this subgroup very difficult.


By Matt Carey

note: numerous edits were made for readability, but no substantial changes to the basic information was made.

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13 Responses to “Are 20-30% of autistic children recovering?”

  1. Darwy December 22, 2013 at 21:03 #

    My niece was diagnosed as non-verbal autistic when she was ~2.5. She’s in her 20’s now, (as an ADHD diagnosis), but otherwise is neurotypical and functional. No biomeddling, no gluten free fad, none of that. Just targeted learning help tailored to her needs.

    • chavisory December 24, 2013 at 02:08 #

      But…is she actually neurotypical, or is she simply well-adapted to her life and actually still working around the intrinsic challenges of autism by using the intrinsic strengths of autism well?

      I was still non-speaking when I was older than your niece. I find the term “functional” pretty mechanistic and dehumanizing in this context, but I’m independent, college-educated, and employed. No biomed, gluten free, ABA, etc. etc. etc.

      I’m still autistic. I’m just 31 and not 6. Some stuff I taught myself, some I learned under extreme duress, and some skill simply develop in their own good time for autistic kids. Targeted learning help can certainly help, but it doesn’t make someone non-autistic.

      This is a huge danger of defining autism only on the basis of deficit and inability…that for someone to be capable, competent, and autistic is seen as mutually exclusive. That if someone is those things, they can’t be recognized as autistic.

      • Darwy December 24, 2013 at 03:32 #

        She has ADHD which is controlled with medication – but she is otherwise neurotypical.

        I apologize if using the word ‘functional’ offended you – do you have a better word to describe it? Would you prefer ‘normal’?

  2. chavisory December 24, 2013 at 03:51 #

    Okay, so what you’re saying is that she was *misdiagnosed* as autistic to begin with.

    Because you don’t become non-autistic no matter how successful individually targeted learning strategies are. If you’re autistic, no amount of worldly success makes you not autistic.

    “Functional,” and other kinds of functioning labels, have some incredibly harmful connotations in the world of autism. Because someone who, say, can’t communicate in a typical way, can’t work, can’t pass for neurotypical, or whose movement or language mark them as unmistakably autistic aren’t *not* functional. The ways they’re wired makes them function very differently from non-autistic people, but they are not non-functional. Functionality isn’t a unit of measurement for success as a human.

    “Normal,” well, you’d have to ask her if she thinks that’s an accurate descriptor of her own internal experience and individual processing.

    • Darwy December 25, 2013 at 15:16 #

      Well, I can see that nothing I write will be well received by either of you, so I’ll just wish you both Happy Holidays.

  3. Maria Hanssel December 24, 2013 at 14:55 #

    No, no, no, NO! Spreading this colossal misconception is doing immeasurable damage to the autism community! This is major misunderstanding of the situation and what observers think they are seeing. Because of this, parents who are fighting school districts to get their children desperately needed therapies and services are going to be brushed off with, “They don’t need it. They’ll outgrow it.”

    I am the mother of an autistic teen. I am autistic (though I wasn’t diagnosed until around 40 years old – what a relief to know I’m not really an alien). From my own life and experience, I can see why people think we “outgrow” autism, but we don’t change 1 tiny iota on the inside. We simply (or, rather, not so simply) learn to play the neurotypicals’ game. It’s a matter of survival. Many of us older adults on the spectrum were bullied into conforming by everyone in their world, such as parents, teachers, other kids. Many of the younger people on the spectrum appear to outgrow their symptoms because of intense early intervention and lifelong therapy. Just because some of us learn to be chameleons, it doesn’t mean we’re any different inside. It doesn’t mean that every day isn’t a struggle to function in society.

    Autism does not “disappear over time” in some people, as is reported in this study. It’s all still there. Nothing is changed except the way one learns to present one’s self. Whether the subjects of the study are aware of it or not, they haven’t changed, they’ve simply learned to conform in order to function and survive. The truth is, I believe the subjects know exactly what I mean. Their parents, teachers, therapists, et al. have a misguided, incorrect “understanding” of what they’re seeing.

    We’re simply actors. We still have our completely different ways of seeing the world and it still causes almost constant social anxiety to some degree, with daily miscommunications and misunderstandings.

    • chavisory December 25, 2013 at 16:59 #

      Yup–gain in skill is not recovery from autism; we’re still doing and learning and experiencing things *completely differently on the inside* no matter how well we’ve learned to pretend or conform or go through the motions.

      I couldn’t ever play the conformity game, but I’m thankful to have found a career field that works for me, both cognitively and socially. But I still have to manage things very differently than my non-autistic peers.

      I worry so, so much for kids whose parents say things like “he was autistic and non-verbal as a 3-year-old, but now he’s talking and social and mainstreamed in school!” No no no. He’s STILL autistic, which doesn’t preclude any of those things. It just means that he’s working really hard to process things in a way that works for him, and while he’s at it, having those challenges minimized or outright denied by the people around him who are convinced he’s not really autistic anymore.

      • Maria Hanssel December 25, 2013 at 22:03 #

        Exactly, chavisory. I wish the parents and others could understand how they’re hurting their child, not helping him, by deciding that their child must by “cured” or something because they’re managing to function. It’s like a brush-off of the child’s almost-super-human effort to function. It’s cutting that child loose, in a way, when they need the support and help the most because they’re struggling so hard to succeed.

        I applaud you for not playing the conformity game. I wish I had that kind of courage and support. The biggest bully in my growing-up years was my mother (evil personified, but that’s another story). I still struggle daily to find a mental “meeting place” with everyone else. I’m lucky with my job, I think. I work for an attorney who is a sole practitioner, so I don’t have to deal with the “office politics” and social scene I would be facing if I worked for a law firm. It’s an interesting job and I get to do research, which I love and which I think I do very well. There’s the phone issues, of course, but we have caller ID at the office, so if my boss isn’t around and I see it’s a call from someone I have difficulty dealing with, I just let voice mail get it.

        I very much appreciate your response. Enjoy the holidays, my friend.

  4. Sherri L. Yandle December 27, 2013 at 17:56 #

    Thank you for an informative article. It is my opinion that due to so many neurological delays that symptoms overlap and I can see where a misdiagnoses could easily happen. Our six year old son is autistic. I have watched great improvement in his development…just last year he finally started talking and reads on a third grade level. But, we still have a lot of sensory issues to help him with. Regardless, I don’t believe one just loses autism. Therapies, support, maturity…I think most autistic adults that have appeared to lose their autism have just been able to learn to navigate a world that is not ready for them.

  5. Thelma Cameron December 31, 2013 at 11:10 #

    What about alternative treatments? You may hear about new or alternative treatments that people are talking about. You may also read online about treatments that claim to “cure” autism. Before starting your child on one of these, talk about it with your child’s doctor or health care provider. Many “treatments” that are marketed to parents of children with autism are very expensive, may harm you child, and are not based on sound research. Beware of treatments that claim to have a miracle “cure” for autism.

  6. Roger Kulp January 5, 2014 at 15:58 #

    I would be very interested in what you think about the emerging disease called Cerebral Folate Deficiency Syndrome,which I have a diagnosis of.It hasn’t gotten al that much attention,because the full blown syndrome is not all that common.It’s a very interesting disease,that can involve regressive autism,learning disabilities,stroke like episodes and seizures,visual impairment,multiple types of developmental delay,not just language,T-cell immune deficiency,megaloblastic anemia,and often mitochondrial disease.In cases like mine,where you have all of these problems,but no mitochondrial disease,there is often another metabolic or transporter deficiency of some kind,In my case,Severe MTHFR Deficiency.The more medical and other comorbids,the more severe the autism.There are some kids who have only the milder disease,and “only” have autism.

    There are genes involved in CFDS,there is a certain type of family medical history,and there clear biomarkers.The folate receptor autoantibodies,gene mutations,certain metabolic tests that point to seriously low folate in the body,etc.These can be tested for at any age,and I am one of the handful in whom the disease has been diagnosed as an adult.We had it severely as a children,but no one knew what it was.The diagnosis did not exist then.

    One of the key features of this disease is autism that responds to high dose folinic acid,and a dairy free diet.Cow’s milk has been shown to increase the number of folate receptor autoantibodies in the CSF.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715943/

    Stay on these long enough,and you become neurotypical.The autism,the learning disabilities,everything brain related all goes away sooner or later,but you need to stay on this treatment the rest of your life to stay this way.Since I was diagnosed as an adult,it took a long time,a little over three years,for my autism to completely go away,but it did go away.I had lived with my mother all of my life,and this diagnosis and treatment kept me out of a group home when she died in 2012.

    I remember the debate you had here when Hannah Poling was in the news about autism vs features of autism,in diseases like mito,or,now,CFDS.But doctors and researchers don’t see it that way.They see it as real autism,that is just one of many features of these diseases.Even though these diseases make up a very small part of the overall autism population.

  7. Lara Lohne January 5, 2014 at 19:17 #

    Of these parents that they are surveying, how many of them have children who are now adults or maybe even high school aged teens? And why are they still surveying the parents in those situations and not seeking out the POV of the adult or older teen children instead? An autistic individual’s perspective on the matter is going to be very different from that of the outside observer.

    One simply does not ‘recover’ from autism. They either are for life, or they aren’t for life. Just ask all the adults who are only now being diagnosed and are finally figuring out why life was such a struggle for them (I can’t include myself in that because I don’t have an ‘official’ diagnosis, even though I am autistic.) They didn’t suddenly become autistic in adulthood, they’ve always been autistic, but the ‘awareness’ and diagnostic criteria used today were not available when they were children, therefore a diagnosis as a child was not possible. That doesn’t mean they weren’t autistic and then became autistic later.

    The reverse is just as true. Passing for normal, is not recovery from autism, it just means the individual has been trained to mask their autistic characteristics, which isn’t a good thing, because those characteristics, or behaviors as people are want to call them, are necessary for an autistic individual to properly process the world around them. Take that away and they actually will become less functional. The treatments and therapies used for autistics are nothing more than brain washing, in my opinion, and any child who ‘successfully’ passes for normal due to these therapies has been beat into submission by their caregivers and pretty much told they weren’t good enough the way they were so they needed to change in order for people to love them.

    They may be able to keep up the charade for a good number of years, but at what cost? Just ask those who are adults now and went through these therapies as children, also ask those adults who were not diagnosed as children, managed to incorporate their own coping skills and strategies and then later in adulthood lost it all seemingly suddenly, due to normal regression that happens periodically with autistics, becoming less functional they they had been most of their life. Many are being found to have PTSD, bi-polar disorder, severe depression, anxiety; agoraphobia is NOT uncommon at all in the undiagnosed autistic adult. And these co-morbidities can be debilitating to them, and due to their neurodiverse nature, traditional psychiatric therapies will not work, because the core needs to be addressed and that core is autism. It’s always there, always will be there and it colors everything in an autistic person’s life. Masking the autistic part of a person doesn’t make them NOT autistic, it just takes away their ability to control their own environment in the way that works for them. Take away anyone’s control and what happens?

Trackbacks/Pingbacks

  1. Details about the potentially “recovered” autistic kids in the National Survey of Children’s Health | Left Brain Right Brain - December 27, 2013

    […] 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 […]

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