Evidence of autism recovery

14 Aug

There’s evidence of autism recovery on a vast scale. That is what we are being told by bloggers covering the latest survey from the National Survey of Children’s Health. The survey showed that some parents are told that their kid is autistic, but the kid doesn’t isn’t currently autistic.

The survey is an intersting thing. They call homes and ask a lot of questions about one of the kids in that home. The questions are not just about autism, but about lots of medical topics. They do this survey every few years.

They added some new questions to the survey this time. In the past they just asked if your kid had autism. Now, they have a two part question:

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

followed by

does [the child] currently have autism or ASD

Many of the people who responded “yes, someone told me my kid had an ASD” later responded “No” to “does you child currently have Autism or an ASD”.

Bloggers are saying this means that kids “lost their original diagnosis”. Well, we can’t say that. We don’t know what the *original* diagnosis was. Consider this. We don’t know if a kid had a diagnosis of developmental delay, then someone suggested autism, then later retracted the autism on a formal diagnosis. In that example, the kid still has his “original” diagnosis: developmental delay.

I can feel the eyes rolling as people think, “there he goes, trying to weaken the evidence of recovery with vague statements”.

So, let’s look a data. Let’s dig a little deeper than most. I’m not so good at SAS (the statistical package that is used to read the data), but I think I did OK. Let me know if you catch a mistake and I will correct it.

How many kids had a diagnosis (or just a statement) that they were autistic?

Answer: 1427

How many kids were told they were autistic and later were told they were not?

Answer: 459. About 1/3 of the total.

People stop there and leave it implied that the kids don’t have any diagnoses any more. Bad assumption. Let’s check on that. Let’s look at some of the other diagnoses given in the NCHS.

How many of the 459 now have other diagnoses? Here’s a sample of a few other diagnoses:

219 Developmental delay
27 Speech delay and no developmental delay
8 Brain injury and no developmental delay
65 ADHD and no developmental delay

There may be some crossover between, say speech delay and brain injury or ADHD, but for simplicity I’ll just add them all together to get:

319 of 459 (70%) have one of the diagnoses I listed.

A more simple check: how many of the 459 need supports in school? 97%. All but 14. Yes, parents are being told that their kids “have autism” and the parents are later finding that the kid does not “have autism”. That doesn’t mean that the kids are “recovering”.

Is it possible these kids really qualified for an autism diagnosis at one time? Sure. But, I would assert it is as likely or more that a lot of misdiagnoses were made. That’s if autism diagnoses were ever made. Remember that question?

Has a doctor or other health care provider ever told you that [the child] had Autism, Asperger’s Disorder, Pervasive Developmental Disorder, or other Autism Spectrum Disorder?

Well, if you pediatrician said, “I think this kid may have autism. Go see a psychologist”, may parents would anwer “yes” to the question. The kid wasn’t diagnosed. Pediatricians can’t diagnose. But his parents were told he/she had autism.

Be that as it may, the bottom line: the idea that the NCHS data shows that kids are recovering from autism is weak at best. The data certinainly doesn’t show kids recovering from autism and becoming typical. Most of the “recovered” kids still have a diagnosis of some sort. Almost all are receiving some sort of support in school.

There is more information in the dataset. A couple of blog posts more, at the least.

26 Responses to “Evidence of autism recovery”

  1. Catana August 14, 2009 at 13:41 #

    “there he goes, trying to weaken the evidence of recovery with vague statements”.

    What could be vaguer than a telephone survey with vaguely phrased questions, basing its findings on vague answers?

  2. Dawn August 14, 2009 at 13:59 #

    Hey, Sullivan…I know SAS pretty well, since I use it almost daily. If you can tell me where the program is so I can look at it, I’ll let you know if the programming is correct (you can have major errors in SAS and still get reasonable results…just not the RIGHT results, as I know to my sorrow…) If you can see emails, you can send the info to me.

  3. Dawn August 14, 2009 at 14:04 #

    Never mind, I was actually able to access the site and found it (my employer has a very weird firewall that blocks things based on who-knows-what criteria.) I’ll review the code and let you know what I think of it.

  4. Dawn August 14, 2009 at 14:31 #

    Last post today, I promise 🙂
    The code is pretty basic, it assigns scores to answers then adding up the scores and doing other calculations. However, what I found more interesting was this statement (capitals for emphasis are in the original, bolding is mine):

    “Use caution when interpreting responses to the questions about specific health concerns in the NSCH. A response of YES to “having ever been told by a doctor or other health professional” that a child has a specific condition DOES NOT necessarily indicate that the child still has or ever had that particular condition. For this reason, affirmative responses to the specific health condition questions should not be interpreted as current prevalence.”

    This caution is listed with ADHD, Autism, and several other conditions.

    • Sullivan August 14, 2009 at 15:51 #

      Dawn,

      you can respond as much as you want 😉

      Thanks so much for taking a look. I know that it isn’t exactly easy to find the data on the website. Not knowing SAS, I tried to convert or import into Excel (not successful). I finally got the SAS viewer and tried to export the data…not successful. I found that the viewer allows me to do queries. So, I did searches like “k2qs35b=0” (for question 35b, answer no). I then just scrolled down to see how many responses fit.

      I looked at a fair amount of questions–future blog posts. Doing that over and over makes it very possible to make a mistake.

      • Sullivan August 19, 2009 at 04:33 #

        Just curious–did anyone else check on the NSCH website and check data vs. socioeconomic status? I bring this up because the so-called “recovery” rate is much lower amongst the wealthy.

        “Had condition at some point, but not currently” is the category (but is an incorrect interpretation of the questions)

        at or below the federal poverty line: 0.8%
        1 to 2 times the federal poverty line: 0.8%
        2 to 4 times the federal poverty line: 0.4%
        4 times or more the federal poverty line: 0.6%

        If this is an indication of “recovery”, then do the poor in the U.S. know more than the wealthy?

        Somehow I doubt that people below the poverty line are doing a lot of HBOT, IVig, chelation, etc.

  5. livsparents August 14, 2009 at 15:27 #

    Like you said, so many things could be driving that number: changed diagnosis; idiot ‘health care providers’; misunderstanding of the questions’ intents. Once you peel away some of those those major layers, you can descend down the likelihoods of lost diagnosis explained by true maturation, intense ABA, or least of all, biomed recoveries.

    But as you can see, the curation/causation crowd is already beginning to claim them as their own: the first step has been to inflate the numbers; the next step will undoubtedly be “see…a CURE IS POSSIBLE…most of these are biomed!”

    • Sullivan August 14, 2009 at 15:55 #

      livsparents,

      there are some testable questions one could ask to check the validity of whether biomed or even ABA supported “recovery” is supported by the data.

  6. JoyMama August 14, 2009 at 16:07 #

    It looks to me as if it’s actually even more vague than “How many kids were told they were autistic and later were told they were not?”

    The way the second question is worded (“does [the child] currently have autism or ASD”) — the parent doesn’t have to be “told” anything by anyone about the supposed recovery. According to the terms of the question, it looks like they could answer on the basis of making their own judgment, no health-care professional needed.

    “We’ve seen such improvement with little Timmy, I’m SURE he doesn’t have autism any more!”

    The bit about 97% still needing supports in school is much more what I’d expect.

  7. Morgan August 14, 2009 at 16:34 #

    Could be that we’re already seeing the results of ASD screenings at younger ages. Turner and Stone, 2007 http://www3.interscience.wiley.com/journal/117960627/abstract
    report rates of diagnostic instability that appear to be consistent with your NSCH.

  8. Jeni Hill Ertmer August 14, 2009 at 19:11 #

    When my two little grandchildren (siblings, they are -not cousins) were diagnosed as having autism, literature I read then as did my daughter said -and I firmly believe this -that this is a life-long disorder. To me, that means they do not “recover” in the sense that they are totally “cured” and the autism is gone. I will accept the term that they are “in recovery” and I would compare it to an alcoholic who once recognized as being alcoholic is always that but said person can then be “in recovery” from alcoholism although never totally achieving the status of being “recovered.” Or someone diagnosed with juvenile diabetes -do they ever lose that diagnosis? They can take meds and manage their life but it’s still there, is it not?
    And so it is with my grandkids -they are “in recovery” -going to preschool programs for autistic children, some of their classes are also integrated with NT preschoolers as well. They receive lots and lots of therapy with the goal being to lessen the impact of the autism factors in each of their lives. They are constantly learning not just academic things that they can comprehend now but they are learning to speak, to behave in a manner that is considered to be the “norm” of society -i.e. to lessen the tantrums and meltdown or the obsessive/compulsive behaviors, the terrors that exist in their minds, etc.
    Do these things negate the autism? IN my opinion, no -it is still there but it becomes more manageable through these programs for each child to develop, to have an easier existence as he or she grows up and as an adult then too. To me, it is no different than the normal things we would teach a child who is considered to be “NT” -just that different tactics may be needed to get those lessons across to children with autism. Does that lessen their value? In my opinion, not at all! They are still my beautiful grandkids, their mother’s little angels who often have little devilish streaks -just as their mother did and their aunt and uncle too.
    But they will always have this disorder -just that they will learn ways to work around it -as a diabetic learns what foods his/her system can handle or an alcoholic realizes that it is just one drink that separates that person from that disease too.
    Sorry for the rambling but this is something that once I use my voice, because I feel so strongly about this, it’s hard to stop vocalizing -via the keyboard in this case -on this topic.

  9. dr treg August 14, 2009 at 20:03 #

    “I will accept the term that they are “in recovery” and I would compare it to an alcoholic who once recognized as being alcoholic is always that but said person can then be “in recovery” from alcoholism although never totally achieving the status of being “recovered.””

    And what is the reference for this clinical gem?

  10. Maddy August 14, 2009 at 20:11 #

    I remember reading somewhere…….that there is a whole ‘art’ to designing and refining the questions for a whole myriad of different reasons. This would seem to demonstrate why ‘the right question’ is so important.

  11. Laurentius Rex August 14, 2009 at 20:19 #

    AEC Matador

    Scammell Pioneer

    Now those WERE recovery trucks.

  12. Joseph August 14, 2009 at 23:21 #

    The first question is a about what parents have been told in the past (accepted or not.) The second question is about what parents believe in the present.

    That method can’t give an accurate answer about diagnostic stability. An observational study is needed for this, and there are a few.

  13. dr treg August 15, 2009 at 00:35 #

    This thread just about summarizes the current ignorance re. “autism”.

  14. David N. Brown August 15, 2009 at 06:46 #

    One problem in debating “recovery” either way is that autism is defined partly as a pattern of mental development. In biology, developmental processes are accepted as a means of distinction (eg. marsupial and placental mammals). I think so-called “recovery” is at least plausible, simply as a convergence of the autistic development path with points in the “normal” range. An analogy that has crossed my mind is the examples of the wolf and the thylacine: Both looked very similar because they were adapted for the same niche, but the thylacine was still a marsupial.

  15. navi August 15, 2009 at 12:04 #

    dr treg:

    why ask for a reference? it’s well known once an alcoholic, always one. even if not drinking. This is what AA espouses, at least. It’s also the nature of substance dependence disorder. then you’re called a ‘recovered alcoholic’ so it’s clear you’re not drinking. If you can drink without being dependent on it, you weren’t really an alcoholic (AA would probably say you’re fooling yourself, though – they don’t tend to accept the existence of substance abuse disorder, which is different from substance dependence).

    Yes, the comparison to autism is a bit offensive, but alcoholism is the only condition I can think of where the term ‘recovered’ is used in a way that does not suggest you don’t still have the condition. I’m guessing that’s why she used it.

    As a person with family members with alcoholism, I don’t find it quite as offensive, as others might. Just as we want to remove the stigma surrounding autism, we should also remove the stigma surrounding substance dependence disorders. More people might be able to ‘recover’ from substance dependence if there was not such a stigma. Stigma provides a barrier to treatment.

    Her post is otherwise rather positive about her grandkids’ autism. She simply provides an example of what someone could mean by ‘recovered.’ A proper term would actually be progressing.

  16. dr treg August 15, 2009 at 17:17 #

    Do you have a scientific reference re dependency never being self-limiting – AA is a self-help group and not scientific.
    Most other psychiatric diseases have self-limiting varieties e.g. self-limiting depression, psychosis, anxiety, OCD.

  17. Anne August 19, 2009 at 21:22 #

    Just as likely that kids from lower income families get their services taken away because their families don’t have the financial means to challenge it when their kids are deemed not to qualify for services anymore. This sometimes happens at the transition point between early intervention and entry into special education.

  18. Keith February 18, 2016 at 20:03 #

    This recovery conversation goes out the window when you start comparing the autistic children that are in the moderate to severe section of the spectrum. While some diagnoses on the bottom portion of the spectrum can clearly be inaccurate, the same is not true on the top half I speak of. These severely afflicted children see absolutely zero “recovery”, but instead, through early intervention and highly specialized schooling (when and where available), both the children and their parents learn to “cope”.

    I don’t mean to sound pessimistic or negative, but I am both the father of a severely afflicted child with ASD, and also a realist. I see a lot of parents around me, almost daily, who are in complete denial, who chase snake oil salesmen with their HBOT chambers and other unicorn-like treatments, promises of recovery. It just doesn’t happen. It pains me to see them throwing money- sometimes their life savings, at anyone who suggests they found the “cure”, and many of them see results. Yes, they see results. Results that are transparent to others who are not so attached to the child, like me. They see it because they want to see it, and I feel even more sorry for them, but at the same time, angry that they are wasting resources instead of using them to plan for the forseeable future of “coping”.

    We all want to see our children recover, even be cured. But reality doesn’t seem to support that position.

    I can see how all of these lines get blurrier as the level of the child on the spectrum is further down in the milder areas, or with aspergers- the changes and recoveries would systematically be far more subtle and difficult to see or track.

    But again, I assure you, in the severe area, none of these ‘cures’ work. Not even a little.

    Let’s not mistake the obvious either- like the gluten/cassien-free diets and such. They can help a LOT with digestive disorders that autistics especially appear to have. Even measurable instances such as seizure activity and frequency can be affected in a positive direction with a change in diet, should gluten tolerance be an issue within the child. Less distress internally can alleviate frustrations and acting out. No doubt. But does absolutely nothing to change the autism itself.

    I do hope every day for a “cure”, or at least a “why” so we can address how to stop it from occurring in the future, but care for our kids today needs to be therapy, specialized teaching, and lots of love and patience.

    I am lucky, although my child is severely afflicted, she’s also a wonderful kid and generally happy. I do everything in my power to maintain that. I cope. We cope.

    • Sullivan (Matt Carey) February 19, 2016 at 21:45 #

      Consider a few questions–

      If a cure would take your child from being a wonderful kid and generally happy into a bad person who hates life, would you still “want to see [your child] recover, even be cured”?

      There is no cure. So we can’t talk about it as a risk/benefit calculation and it is, in my view, meaningless. For example, would I want a cure if the chances of failure with permanent harm or death were 10%? Were 90%?

      What if a “cure” erased a person’s memory? Or reset a person’s emotions so that the person stopped loving those in his/her family or had passions for things like music?

      We are talking about changing something that is the most fundamental part of a person–how he/she thinks. It isn’t going to be like taking an antibiotic to rid one’s body of a pathogen. If a cure is even possible, we are talking about something which might make changes far beyond just whether one qualifies for a diagnosis of autism.

      • Strawman February 21, 2016 at 22:43 #

        Not to change what is the most fundamental part of him! just to help alleviate the the obsessions that bar him from taking an interest in the world around him. Help with need for repetition and sameness. Help him to know how to relate to people when he wants to. Help him not to get frustrated, pacing, making noises because of anxiety
        Just what we want for all our children to have a better easier life. This sounds more like a prayer than a cure. All these simple hopes but not at the cost of taking away his fundamental self or not at the price of his health or well being
        He loves us without reservation and anyone who knows him feels the same about him.

      • Sullivan (Matt Carey) February 22, 2016 at 23:39 #

        Yes, but people always talk about a cure or a treatment as though there is no chance of any adverse reactions.

        This is one of the minor reasons why I don’t really engage in the cure discussions. A major reason is that there is no cure. Likely will not be one in my kid’s lifetime. Perhaps treatments that help support an individual, but cures, unlikely. And that doesn’t even touch on the fact that most parents can’t even agree on what the definition of “cure” might be.

  19. Lucie February 20, 2016 at 10:24 #

    s followed in accordance to the prescribed HCG protocol.
    This means that they operate for only selected kinds of bodies.

    If you must snack in the evening hours, pick a definite time, maybe ten PM for
    the small treat. By charting your weight loss
    successes day by day, you will be able to understand which foods are good for
    your diet and which foods should be avoided. If
    you ever find yourself having to pay for special low calorie diet meals to
    be delivered to your door in an attempt to control your diet,
    you may consider yourself a bit of a loser.

    • Chris February 20, 2016 at 17:40 #

      There is a big difference between weight loss and “curing” autism.

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