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The antivaccine movement and “autism biomed” versus “outgrowing” autism

A commonly misunderstood aspect of autism and autism spectrum disorders (particularly by antivaccinationists and believers in the quackery known as “autism biomed”) is that autism is not a condition of developmental stasis. It is a condition of developmental delay. Autistic children can and do exhibit improvement in their symptoms simply through growth and development. However, parents who subject their children to “autism biomed” quackery of the sort championed by Jenny McCarthy and others seem to view autism as a condition of developmental stasis. That’s why they so easily and predictably attribute any improvement in their children to whatever quackery du jour they are using on them. It’s also why, in order to determine whether a given intervention in autism has any real effect, randomized controlled trials are required. Indeed, it’s not so difficult to see why, if you take into account the widespread belief that autistic children do not improve, along with parents’ imperfect human memories riddled with confirmation bias, confusing correlation with causation, and other confounders like regression to the mean, so many parents believe that “autism biomed” treatments have actually helped their children. Moreover, improvements observed in autistic children tend to be uneven, with periods of little change interspersed with periods of rapid development. Should such a period of rapid development appear after a “biomed” intervention, guess what gets the credit for the improvement?

But how much improvement is possible? Do autistic children “recover,” and, if they do, how much can they recover? The autism biomed movement is rife with stories of “recovered” children, but often, if you investigate these stories, they turn out to be less than convincing, not unlike the way that alternative medicine cancer “cure” testimonials tend not to be so impressive when examined closely. However, in the case of autism, this isn’t always the case. There are clearly children who lose their diagnosis of autism or ASD, with observations published as far back as 1970, when Rutter reported that 1.5% of adults who had been diagnosed with autism were functioning normally, while 30 years later Sigman et al reported that 17% of autistic children in their group lost their diagnosis and 10 years after that Kleinman et al reported that up to 19% of autistic children “lose their diagnosis.” The reason for this observation is hotly debated, and until fairly recently it was often assumed that these children’s recoveries were in fact not true recoveries but children who were either misdiagnosed or overdiagnosed. Such an assumption made intuitive sense because such an outcome is more likely with children diagnosed with Asperger’s disorder or pervasive developmental disorder, not otherwise specified (PDD-NOS), both of which are categories that resulted from the expansion of the diagnostic criteria for autism. Be that as it may, when you boil it all down, it is estimated that between 3% and 25% of autistic children “lose their diagnosis.” However, few of these studies explicitly address whether the social and communication abilities of these children are fully typical.

A recent study might help clarify what degree of recovery is and is not possible. Most of the previous studies before this have been small and did not look specifically at the outcomes people are curious about. Published in The Journal of Child Psychology and Psychiatry by Fein et al and entitled Optimal outcome in individuals with a history of autism, this study got some news coverage last week under titles such as Some With Autism Diagnosis Can Overcome Symptoms, Study Finds; Scientists seek clues in kids who outgrow autism symptoms; Some children outgrow autism: study; Health Buzz: Can Autism Fade Over Time?; and Children ‘may grow out of autism’. The authors set the stage in their introduction after surveying the literature, some of which I’ve touched on above:

Several tentative conclusions thus seem warranted based on prior research: (a) losing the ASD diagnosis is a possibility for a minority of children and, at least for some children, is not due to misdiagnosis; (b) ‘optimal outcome’ is associated with higher cognitive functioning and somewhat milder initial symptoms; (c) residual difficulties with language, attention, executive or emotional functioning may persist and need to be characterized. Definitively documenting the existence and characteristics of individuals who lose the diagnosis of autism has important implications for understanding the neurobiology of autism, the impact of intervention on functioning, and the mechanisms underlying improvement. Structural and functional imaging of this group may shed light on whether brain anatomy and function have normalized, or whether normal behavior has been achieved through compensatory mechanisms. The current project aims to document a group of such OO individuals, explore possible persistent weaknesses in areas central to ASD, characterize the range of treatments they received, and look for biological characteristics through structural and functional MRI.

Basically, what the authors did was to characterize these children who would be referred to by antivaccinationists as “recovered.” To do this, they identified a group of 34 children who had had a diagnosis of autism/ASD but no longer meet the criteria for the diagnosis, referred to as “optimal outcome” (OO) above. These children were compared with a group of 44 age- and nonverbal IQ-matched children with high functioning autism (HFA) and 34 children undergoing typical development (TD). What makes this study stand out is that the investigators did something very critical. They were very careful to accept only children whose diagnosis had been made by a physician or psychologist specializing in autism before the age of five verified with a written diagnostic report provided by the parents. Then, as a second step to confirm the diagnosis, the investigators took each report, removed language about the diagnosis, summary, and recommendations but leaving descriptions of the child’s behavior. This redacted reporta were then reviewed in a blinded fashion by one of the co-investigators, along with a bunch of “foil” (a.k.a. control) reports from children with non-ASD diagnoses, such as global delay or language disorder. All foils were correctly rejected, and four OO children’s reports were rejected for inadequate documentation of diagnosis. The second screen was to have the child’s current status evaluated, with clinicians with at least 15 years of experience, who reviewed that the child’s Autism Diagnostic Observation Schedule (ADOS) scores were below ASD thresholds and that in their clinical judgment an ASD was not present.

The overall schema is summarized below:

schemaoo

Other criteria included that the children in the OO group had to be fully included in regular education classes with no one-on-one assistance and no education services to address autism deficits (e.g., no social skills training) and that scores on another communication-related test had to be at or above a certain level.

So what next? Well, the authors interviewed the parents and tested the children using several measures, with, where knowledge of group could affect scoring, the tests scored by a researcher blinded to what experimental group the children. These measures included ADOS, Autism Diagnostic Interview-Revised (ADI-R); Social Communication Questionnaire (SCQ); Wechsler Abbreviated Scale of Intelligence (WASI); Vineland Adaptive Behavior Scales (VABS); Benton Facial Recognition Test; Clinical Evaluation of Language Fundamentals-IV (CELF-IV); and the Edinburgh Handedness Inventory. Sex, age, and handedness didn’t differ between the three groups, but verbal IQ was 7 points lower in the HFA group, compared to the OO and TD groups, where it was in the high-average range.

The investigators reported a number of observations of their groups. First, communication and socialization ADOS scores didn’t differ between the OO and TD groups, although the authors do note that “seven OO participants were judge to have social functioning mildly affected by nonautism conditions, such as anxiety, depression, or impulsivity” and that they will report a full exploration of the psychiatric functioning of all three groups in a separate study. They also noted that by early history the OO group demonstrated somewhat milder social symptoms than the HFA group but that they did not differ in communication or repetitive behavior symptoms. A small number of OO children demonstrated some weakness in the facial recognition test, but it was not statistically distinguishable from what would be expected in the population at large. Overall, by the measures used, the OO children were for the most part indistinguishable from TD children. It was also reported that the children who fell into the OO group also tended to have slightly milder autism upon diagnosis than the HFA group by the ADI-R and SCQ-Lifetime results. Basically, their social deficits seemed to be less marked. However, their language delay and repetitive behaviors were similar to those of the HFA group, at least within the limitations of recollections an documentation from a decade or more before (the mean ages of the groups ranged from 12.8 to 13.9 years).

Of coure, the biggest limitation of this study is that it says nothing about what percentage of autistic children can achieve the “optimal outcome” of losing their ASD diagnosis about what interventions are most likely to facilitate such improvements. The review article from Helt et al that I mentioned before estimated that between 3% and 25% of children diagnosed with an ASD “lose the diagnosis.” However, the percentage who would have achieved this without intervention is unknown. Clearly, a lot more study is needed.

This most recent study (Fein et al) is in line with a study from last year by Fountain et al, which showed up in some media reports last spring. This study reported that approximately 10% of children diagnosed with autism/ASD by age 3 “bloomed”; i.e., they improved rapidly, to the point that by age eight they were high functioning. Similar to Fein et al, Fountain et al observed that repetitive behaviors don’t seem to change as much and that it’s mainly the social and communication dimensions where huge variability in outcomes is seen. Fountain et al also found these correlates with “blooming”:

Bloomers differ from other children with respect to intellectual disability and socioeconomic characteristics. Among young children with severe autism, those most likely to “bloom” are those without intellectual disability and those with more educated, nonminority mothers. Although we are unable to identify the specific mechanisms through which socioeconomic status affects trajectory outcomes, the intervening variables likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services, and many other factors in various permutations. If this heterogeneity in outcomes is associated with parental and community resources, then equal access to early intervention and treatment resources for less-advantaged children is vital. Although some trajectories may be associated with different etiologic drivers, if etiology alone were driving outcomes, we would be less likely to observe the strong socioeconomic effects unless socioeconomic status was associated with exposure to some biological risk factor for a particular autism subtype.

Not surprisingly (at least not to those of us who have followed the antivaccine movement), it is the autistic children born to the types of parents most likely to be antivaccine (more educated, non-minority, higher socioeconomic status) who are most likely to “bloom,” no “biomed” intervention necessary. That’s why, when evaluating whether an intervention of any kind, be it behavioral, medication, or even “biomed,” “works” in autism, it is essential to have a prospective randomized controlled trial. To see what I mean, I’ll refer you to a blog post that is six years old but still very relevant. It’s by Prometheus and entitled, appropriately enough, Listening to Autism. He begins by pointing out that parents, because they observe their children every day, believe that they understand their autism better than anyone else, even experts. Of course, it’s equally, if not more, likely that they are so close to their children that they can’t be objective and that their lack of objectivity can profoundly color their observations and thus lead them astray (confusing correlation with causation, for instance, or mistaking regression to the mean for real improvement), but few of them ever seem to acknowledge, much less accept, this possibility. Prometheus then goes on to discuss the prototypical example of an autism “biomed” treatment: Secretin.

Secretin first hit the scene in 1998, when it was first reported that a single injection of secretin, used as a routine part of endoscopy, appeared to dramatically improve the language and functions of an autistic child. This reporte led to a lot of excitement, a lot of use of secretin, and a bunch of studies of many varieties, short-term, long-term, case series, and, eventually randomized trials. Many of these studies did not support the initial results. Finally, there was a randomized clinical trial done by Repligen, the company that sells Secretin, that was negative. Today, the scientific consensus, as described in a Cochrane Review and multiple other reviews of the scientific literature, is that secretin does nothing for ASD symptoms and that its use in ASD warrants no further study.

None of this stops the autism biomed crowd from advocating and using secretin. If you go to, for instance, the antivaccine crank blog Age of Autism, you will from time to time find commenters extolling the virtues of secretin long after the science has been settled. Other websites still tout it, as well. Indeed, the Florida branch of the Scientology front group Citizens Commission on Human Rights (CCHR) recently argued that the reason the scientific trials of secretin were negative was because the investigators used a “synthetic” version of secretin, while the “dramatic improvements” came from a “natural version” of the hormone from pigs. In other words, some parents and quacks still swear by secretin, even though the evidence is even clearer that secretin does nothing for autism than it is that vaccines do not cause autism.

To explain this, combined the results that I just discussed above with a tale that Prometheus tells, which he calls the Tale of the Lucky Stockbroker:

Long, long ago, a smart fellow decided that he would try to make a lot of money in the stock market. Having watched the market for some time, he realized that the best way to make money on stocks wasn’t to buy and sell them, but to sell expert advice.

Knowing that most people who invested in stocks were wary of advice, he set out to prove to people that he had a special power for knowing when stocks were about to go up or down. He got a list of a ten thousand people who were avid stock traders and sent each of them an e-mail describing his services (and fees) and giving them a “sample” stock pick.

Half of the prospective customers got an e-mail saying that the stock would go up in the next week, and half of them got an e-mail saying that the stock would go down. At the end of the week, the stock he picked had gone down, so he sent another e-mail to the five thousand people who had received the “correct” stock advice.

Half of the five thousand got an e-mail saying that another stock would go up in the next week; half got an e-mail saying it would go down. At the end of the week, he sent out another e-mail to the remaining 2500 would-be customers.

At the end of six weeks, he was down to a little over 150 potential customers, but those 150 has seen him make six correct stock predictions in a row! The last e-mail he sent them was to tell them that they could continue to get these predictions only if they bought a five-year subscription to his service.

There is no claim that autism “biomed” quacks are deliberately doing something like this, although perhaps a few are. However, in effect they are doing something like this. Parents who seem to see results, nearly always due to random chance alone and the human tendency to confuse correlation with causation, will convince themselves that whatever treatment they have chosen is “working.” Given that the very parents who tend to gravitate towards autism biomed treatments tend to be the same parents who blame their children’s autism on vaccines, this should not be surprising. They are already likely to easily confuse correlation with causation. Because children, autistic and non-autistic, develop in “spurts,” it’s very easy to think that a treatment that by chance alone happened to be started right before a period of rapid development, was the reason for the improvement in the autistic child’s symptoms, even if it were homeopathy (i.e., water) that was used. Meanwhile, the parents who don’t see any improvement will drift away from the “treatment,” frustrated that it “didn’t work.” Others lash out at any suggestion that autistic children can “recover” spontaneously or with something other than quackery, for instance, Kim Stagliano of the antivaccine crank blog Age of Autism:

Oh! And did you hear some kids “outgrow” their autism. Yuppers. In the Catholic Church we call that a miracle. When Jenny McCarthy told the media her son had lost his diagnosis she was called a liar. Turns out that the only way to lose the diagnosis is by doing nothing. Jeez, I’m always the last to know… I could be driving that Camaro I’m constantly talking about on Facebook with the money we’d have saved.

I’m not sure why there is such hostility here. My guess is that it’s the implicit conclusion that a significant but unknown percentage of children with autism/ASD can develop rapidly and ultimately fall into the neurotypical group. It doesn’t even much matter, for purposes of the observation that “outgrowing” autism is possible what the mechanism is. The authors propose other possible explanations besides development resulting in brain function that is more neurotypical, for example:

A pressing theoretical question is to what extent brain structure and function have normalized in the OO children. It is possible that effective early intervention plus maturation have resulted in the normalization of pathways and functions or even anatomical structure. Dawson et al. (2012) were able to show EEG evidence of normalization of cortical activation in response to faces versus objects in children receiving Early Start Denver Model intervention for 2 years in early childhood, supporting this possibility. Alternatively, successful intervention may have resulted in compensatory functions, such that overt behavior is normal, but atypical pathways or levels of activation are needed to achieve these behavioral results, as has been shown, for example, in dyslexia by Eden et al. (2004). Structural and functional MRI data were obtained from a subset of each group in the present study and are being analyzed.

More likely, it is a combination of factors. Whatever the case, if anything, Fein et al should provide hope to parents of autistic children by emphasizing that autism is not static and that it should be possible, depending upon the mechanism at work in these children who “grew out of” their autism, to identify science-based personalized strategies to maximize the potential of each autistic children, not to mention the chances that they can eventually function as fully independent members of society living productive lives.

Posted in: Neuroscience/Mental Health, Vaccines

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27 thoughts on “The antivaccine movement and “autism biomed” versus “outgrowing” autism

  1. Amalthea says:

    I suspect that you’re right about a combination of factors. It’ll be interesting to watch developments in this vein, and I hope they look into this http://blogs.scientificamerican.com/guest-blog/2012/11/06/whats-so-special-about-mirror-neurons/ as part of whatever studies are done in the future. It certainly seems to help explain some difficulties suffered by some autistics.

  2. Calli Arcale says:

    I’m sure it’s a combination of factors too, but I’d sure love to know more. I wonder if a prospective study using children diagnosed HFA and following them with things like fMRI from early childhood through adulthood might shed some light on how the brain develops in these atypical individuals to eventually express more typical behavior.

    I was diagnosed ADD as a young girl. My youngest daughter was just diagnosed ADHD Combined Type. When we saw her pediatrician to get her started on Ritalin, the pediatrician expressed surprise when I revealed that I have ADD. “Well, obviously you outgrew it,” she said, probably meaning to be complimentary. I’m not sure “outgrew” is the right word, though. I don’t use medication for it anymore; haven’t since the 90s. But I know I still have symptoms. I’m just able to function as a responsible adult, and consequently it’s not a problem. I would not be surprised if it is something similar with kids who “outgrow” their autism — they still have the fundamental characteristics, but they have learned to function.

    I used to say it was a matter of learning coping skills, but I’m no longer crazy about that phrase either, because it’s not exactly that it’s learning to *cope*. That sounds too much like just learning how to accept the condition, and it’s more than that. It’s learning how to function as a responsible adult. And nearly all people manage that, one way or another.

  3. passionlessDrone says:

    Hello friends -

    Parents who seem to see results, nearly always due to random chance alone and the human tendency to confuse correlation with causation, will convince themselves that whatever treatment they have chosen is “working.”

    I think that some context might be helpful here. Within the past years we have started to see the types of randomized trials of things that would be long considered ‘biomed’ and they are showing results consistent with what some parents reported; positive changes in their children following treatment. [Not linking to avoid spam filter]

    Folate receptor autoimmunity and cerebral folate deficiency in low-functioning autism with neurological deficits

    reported ‘partial or complete clinical recovery’ in children with cerebral folate deficiency who received oral folinic acid supplements (two youngest participants achieved ‘complete clinical recovery’) While this is certainly a very small subset of children with autism, I don’t think that this particular population experiencing improvements was ‘random chance alone’.

    Similarly, there are several randomized, double blind, placebo control studies of supplements that would certainly have been considered ‘biomed’; and those studies show improvements also; i.e.,

    A randomized controlled pilot trial of oral N-acetylcysteine in children with autism.

    reported a decrease in the irritability subscale when compared against placebo. Considering the vast wealth of data we have implicating a state of increased oxidative stress in children with autism, I did not find this too unsurprising.

    Similarly, the oft maligned b12 shots were found to normalize glutathione redox ratios and improve behaviors in a subset of children with autism

    Pilot study of the effect of methyl B12 treatment on behavioral and biomarker measures in children with autism

    Thirty (30) subjects completed the 12-week, double-blind study and 22 subjects completed the 6-month extension study. No statistically significant mean differences in behavior tests or in glutathione status were identified between active and placebo groups. Nine (9) subjects (30%) demonstrated clinically significant improvement on the Clinical Global Impression Scale and at least two additional behavioral measures. More notably, these responders exhibited significantly increased plasma concentrations of GSH and GSH/GSSG.

    Again, we have a biomarker known to be perturbed in a significant number of children with autism, a treatment that should be expected to normalize that value, and behavioral differences observed in the population subset you would expect. Is this ‘random chance’ or ‘confusing causation with correlation’?

    What about immune modulation? A study from Iran gave a cox-2 inhibitor (or placebo) alongside risperdoone

    Celecoxib as adjunctive treatment to risperidone in children with autistic disorder: a randomized, double-blind, placebo-controlled trial.

    Significant time?×?treatment interaction was observed for Irritability (F (1.658, 63.021)?=?13.580, P?<?0.001), Lethargy/Social Withdrawal (F (1.948, 74.032)?=?16.811, P?<?0.001), and Stereotypic Behavior (F(1.742, 66.198)?=?12.104, P?<?0.001), but not for Hyperactivity/Noncompliance (F (2.564, 97.424)?=?1.469, P?=?0.232), and Inappropriate Speech subscales (F (1.607, 61.075)?=?0.173, P?=?0.794). By week 10, patients in the celecoxib group showed significantly greater improvement in the Irritability (P?<?0.001), Lethargy/Social Withdrawal (P?<?0.001), and Stereotypic Behavior (P?<?0.00) but not in Hyperactivity/Noncompliance (P?=?0.202) and Inappropriate Speech (P?=?0.802) subscales than the placebo group. Complete response was achieved by four (20 %) patients in the placebo group and 11 (55 %) patients in the celecoxib group (? (2) (1)?=?5.227, P?=?0.022). Frequency of side effects was similar between the two groups.

    As much as the standard bearers of this website don’t like to talk about it; the immune system in autism is dysregulated, and lo and behold, a randomized, placebo controlled study on inhibiting inflammation shows positive results behaviorally. What a crazy coincidence!

    One of the most often maligned ‘biomed’ treatments is dietary change, and yet, as we look closely at what is going on with children with autism and GI, we find qualitative differences; i..e.,

    Impaired carbohydrate digestion and transport and mucosal dysbiosis in the intestines of children with autism and gastrointestinal disturbances

    Which compared children with autism and severe GI, and children with severe GI, and reported:

    Ileal transcripts encoding disaccharidases and hexose transporters were deficient in children with autism, indicating impairment of the primary pathway for carbohydrate digestion and transport in enterocytes. Deficient expression of these enzymes and transporters was associated with expression of the intestinal transcription factor, CDX2. Metagenomic analysis of intestinal bacteria revealed compositional dysbiosis manifest as decreases in Bacteroidetes, increases in the ratio of Firmicutes to Bacteroidetes, and increases in Betaproteobacteria. Expression levels of disaccharidases and transporters were associated with the abundance of affected bacterial phylotypes.

    Again, this isn’t something for every child with autism, this study only included children whose problems were so bad that endoscopy was warranted, but when they got in there, they found that all things are not equal. It is not simple a matter of some children with autism also having GI problems. There are qualitative differences in their bacterial populations and their ability to digest carbohydrates. Notably, from Williams, a lack of support for a genetic cause of these problems;

    Therefore, it is unlikely that the combined deficiency of disaccharidases (maldigestion) and transporters (malabsorption) are indicative of a primary malabsorption resulting from multiple congenital or acquired defects in each of these genes

    The biomed movement has some problems, a lot of them, and one place of agreement (I think) between Dr. Gorski and myself would be that more randomized trials are definitely necessary. That being said, we are no longer in a place where every claim of improvement can be queued into the ‘random chance/pattern seeking parent’ bucket; you are missing a lot of real observations when you do this. There is a lot of uncontrolled trials going on out there, lots of it no doubt doing nothing, some doing harm, and some doing good. I don’t know the right way forward.

    I have no doubt that a lot of kids do ‘grow’ out of their autism diagnosis, and biomed, or conventional treatments aren’t necessary for some of those children to get there. But that reality doesn’t do anything to blunt the understandings that clinical trials and clever analysis like what is listed above, and those findings are consistent with what parents have been saying for a while now, my child got better when I tried X. Why can’t we have both? Sifting through the chaff is difficult, but we shouldn’t just throw everything out based on people being wrong on secretin.

    - pD

  4. Calli Arcale says:

    We *can* have both, pD, I don’t think anyone’s disputing that. But studying the way some kids seem to “outgrow” their diagnoses is absolutely critical to understanding other studies. To tell if a treatment under study has actually caused the improvement, you need to see improvement beyond what random chance alone would predict, and before you can know *that*, you need some understanding of what random chance actually produces. We won’t know that unless we study how well kids improve absent the treatments under study.

  5. David Gorski says:

    Moreover, before one can design randomized clinical trials to test whether an intervention results in more autistic children improving to the point where they lose their diagnosis, it is essential to have a good estimate of the baseline rate at which that happens. Without a decent estimate of that number, it’s hard to calculate how many subjects would be necessary in each group to achieve the statistical power desired.

  6. lizditz says:

    I also recommend Emily Willingham’s usual thoughtful, nuanced take on the study http://www.forbes.com/sites/emilywillingham/2013/01/17/can-people-really-grow-out-of-autism/

    It’s not a huge surprise that autistic people with average or above-average cognitive abilities might be able to intellectualize social rules and algorithms and put them convincingly into practice. Does that ability mean that they aren’t really autistic? The real crux to answering that is this: Do we view autism only as a clinical diagnosis based solely on behavior and outward function, or do we talk about it as a neurobiological construct and identification, with an understanding of the context of the hidden disability and the hard work that those outward behaviors require?

    Many conditions that we measure either directly with lab tests or behaviorally can lie under a mask of apparent normalcy or typicality. A woman with diabetes who maintains her blood sugar at a healthy level through diet and medication still has diabetes. A person with obsessive-compulsive disorder who fights successfully every second of every day against caving to obsession or compulsion still has the disorder. Anyone who has ever put on a public face when all they wanted to do was stay in bed should understand something about doing the internal hard work of compensating for a disability without showing outward manifestations of it.

    Go read the whole thing.

  7. passionlessDrone says:

    @Calli Arcale & Dr. Gorski –

    We won’t know that unless we study how well kids improve absent the treatments under study.

    Moreover, before one can design randomized clinical trials to test whether an intervention results in more autistic children improving to the point where they lose their diagnosis, it is essential to have a good estimate of the baseline rate at which that happens.

    That doesn’t paint a very good picture for the future, as far as I am concerned. While this thread had a ‘biomed’ angle, shouldn’t this also apply to ‘conventional’ treatments; i.e., speech therapy, ABA, OT? Presumably these interventions are there to help, they certainly cost an arm and a leg, but they do serve to muddy the waters a bit in this regard. Do we need control populations that get no treatments at all? Would it be ethical to ask a set of parents not to try to get their child ABA, or speech therapy, or anything else? Yet if we do not do this, we don’t really have a valid baseline.

    It reminded me a little bit about some inclusion criteria for a GF study I saw a while ago, one was along the lines of ‘must not have tried GF diet previously’. It got me to laughing a little bit; my son was a ‘gut kid’, he was having six or more bowel movements a day, every day, for about six months near his second birthday. I read about GF, got things set up in the kitchen and fired; it didn’t ‘cure’ his bowel problems, but my admittedly ‘biased’ viewpoint was that I went from changing six diarrhea diapers a day, to more like 2 loose stools a day within the first week. So, I would have been precluded from participating. I understand the reasoning behind this as a weed out criteria from a study design perspective; but the reality is that if there was another parent with a kid who had *chronic GI* problems, this study would never, ever reach them, because those parents have already tried the diet. Some it may have helped, some it might have done nothing, but I’m really struggling to envision the parent who is motivated enough to participate in a trial on GF because their child has chronic problems, but so dumb that they didn’t already try it on their child. It is a catch-22.

  8. BillyJoe says:

    Regarding “outgrowing” ASD:

    We had a poster here some time ago who has HFA. Over time he was able to mimic “normal” behaviour so accurately that no one could tell he had ASD. But, in reality, internally he was no different. He still did not have empathy and emotion, he merely learnt how to fake it and he found he got along much better as a result. In fact, in his opinion, he is a superior being because he can make decisions unimpeded by emotion. He even conjectured that evolution might be pushing Homo sapiens in this direction.

    Perhaps he will see this article and post a comment.
    (I won’t link back to the original article because that’s where I and Jeremiah started our infamous exchange)

  9. lizditz says:

    @BillyJoe, re your claim that persons with autism, (even the so-called) “high functioning” do “not have empathy and emotion”

    The assumption that autistics lack emotion and empathy is false and hurtful, on a par with the assumption that all people of African ancestry love watermelon, fried chicken, and have natural rhythm.

    I suggest you educate yourself, by reading what autistic people say about their own experiences of emotion and empathy. You might start with Autism and Empathy and The Loud Hands Project

  10. passionlessDrone says:

    @Lizditz -

    I don’t think BillyJoe was claiming that, but rather, relaying the statements of another poster, who himself, claimed:

    a) he had autism
    b) he had no empathy and/or emotion

    Now is the time where I guess we can start to tell that person (jerimiah?) that he doesn’t really have autism, as you know, that’s the kind of thing that is OK in some circumstances.

  11. Calli Arcale says:

    pD:

    That doesn’t paint a very good picture for the future, as far as I am concerned. While this thread had a ‘biomed’ angle, shouldn’t this also apply to ‘conventional’ treatments; i.e., speech therapy, ABA, OT?

    Of course. I don’t understand why studying the way children progress gives you a bad feeling for the future; I know you’re concerned about biomed treatments getting short shrift, but really, you seem to focus far too much on “tit for tat” and not enough on what sort of research actually is done. You seem more concerned, indeed, about the *tone* of this sort of effort, and the possible implication that maybe biomed won’t turn out to do very well once we know more about how kids with autism progress. But how is that a bad thing? If a treatment (any treatment*) isn’t effective, don’t you want to know?

    And more than that — better understanding the natural course of an autistic child’s development could very well yield *new* approaches for treating autism. And that can only be good.

    *Yes, that can include ABA, though personally I’m hesitant to call it a treatment. I’m personally unconvinced ABA is superior to or even meaningfully distinct from many other forms of intensive positive-reinforcement training. I think it exists as an entity primarily to facilitate insurance payment for it. Which isn’t totally a bad thing, but as with any standardization of education, there is the risk of becoming hidebound.

  12. trrll says:

    In the course of writing a review, I read through the literature on secretin and autism. It’s really quite amazing. The earliest controlled studies attempted to replicate the original case reports, with a single injection of porcine secretin. Quite a few kids in the secretin group got better; unfortunately, so did a similar number of the control group. Some researchers were unwilling to take “no” for an answer. In subsequent studies, researchers started varying the conditions in hopes of getting secretin to work: higher doses, more injections, human secretin instead of porcine. I even found one study the made it into an ointment and smeared it on the skin (why they expected a peptide to cross the skin I don’t know). We arguably know more about secretin than about any medication used in autism, and what we know is that it doesn’t work. Thousands of children were treated with it; fortunately, it seems to have been fairly benign, and probably did not do them any great harm, although it could easily have been otherwise.

  13. trrll says:

    It would be very interesting to do study the brains of “optimal outcome” individuals. In postmortem studies, most autistic brains are surprisingly normal in terms of gross morphology, although some exhibit subtle abnormalities at the level of cytoarchitecture. But the neurochemistry is pretty distinctive, with substantial decrements in GABA and serotonin receptors in specific regions. So this might give a clue as to whether the brains have really normalized, or whether these individuals have just learned to adapt. Maybe similar studies could be done in living subjects using PET ligands, although in the absence of a therapeutic benefit I’m a bit uncomfortable with the idea of injecting people with radioactive drugs, particularly when they may not be fully capable of informed consent.

  14. Woody says:

    “We had a poster here some time ago who has HFA. Over time he was able to mimic “normal” behaviour so accurately that no one could tell he had ASD. But, in reality, internally he was no different. He still did not have empathy and emotion, he merely learnt how to fake it and he found he got along much better as a result. In fact, in his opinion, he is a superior being because he can make decisions unimpeded by emotion. He even conjectured that evolution might be pushing Homo sapiens in this direction.”

    That does ring a bell. If I remember correctly, that was “petrossa”, right?

    @trrll – I don’t think you would have to resort to PET ligands for such a study, though they would have some advantages. There is already a wealth of MRI tractography studies showing differences between individuals with ASDs and typically-developing peers. A longitudinal study should be able to detect a change in such imaging signatures in the individuals who “lose their diagnosis”, similar to the EEG change over time mentioned in the Dawson study included in Gorski’s original post. Perhaps those longitudinal imaging studies have already been done. It wouldn’t surprise me at all if those imaging signatures remained in the individuals who “lose their diagnosis”, which would argue that they have simply become very skilled at “blending in” when needed.

  15. passionlessDrone says:

    @Calli Arcale -

    I don’t understand why studying the way children progress gives you a bad feeling for the future;

    It is because I do not believe that studies meeting such stringent requirements are possible; we cannot ask parents not to try interventions that might affect the outcome of the study. If we find a set of parents who did not seek speech therapy, did not seek ABA, did not search out horse riding while being chelated, they will be parents for whom the developmental trajectory of the child was of no real concern to the parent; the last population that will help us understanding children who do need real help.

    you seem more concerned, indeed, about the *tone* of this sort of effort, and the possible implication that maybe biomed won’t turn out to do very well once we know more about how kids with autism progress.

    I seem concerned that the ‘tone’ of the article is based on a caricature of the available data; there are controlled trials that are validating some of what the biomedical community has been saying, but none of that seems to have any interest for Dr. Gorski if there is an opportunity to ignore it and paint a group of parents as hopelessly confused, pattern seeking antivaccine zealots.

    The reason that this sticks in my craw is that I am terrified of another child suffering like my son did, needlessly. When my son was about two, he had no fingernails, at all. He was constantly, all the time, biting them. We just could not physically keep him from biting his nails without some type of Hannibal Lechter style physical restraint. [I would note that this is not a 'typical' behavior, and the constant attempt to characterize autism as simply 'developmental delay' misses the behaviors a lot of saw by a light year. While some facets of autism involving communication can be characterized as delayed, others, such as self injurious behavior, repetitive behaviors, or sensory integration problems are *not* 'typical' behaviors that all children start with and then grow out of. It makes for a good way to toss in the accusation of the confirmation seeking parent to characterize autism as a model comprised of solely of developmental delay, but it is a false model.]

    When we went to our first DAN doctor appointment, we told the physician about our son’s incessant nail biting (among other things). She said, ‘this kid is low in zinc.’ We drew blood, and sure enough, his zinc was very low, a finding that has subsequently been seen in the literature (i.e., Infantile zinc deficiency: Association with autism spectrum disorders which studied over a thousand children, or The plasma zinc/serum copper ratio as a biomarker in children with autism spectrum disorders which looked at over two hundred.) We supplemented zinc and my son flat out stopped biting his fingernails that week. Now, he wasn’t ‘cured’, he still has himself a boatload of autism, but the change was predicted by our son’s doctor, they were real, and the change was not subject to placebo or pattern seeking (‘does he have fingernails, or not’?) and we weren’t the only people who observed it. (his pediatrician at the next visit: “well, his nails look a lot better”).

    Of course, if someone could show me something that indicates that all children go through a phase where the bite off all of their fingernails, well past the fingertips, then maybe our observations were ‘all random chance’ and his improvement was the result of a developmental spurt.

    I am sick to my stomach at the thought of another child *not* getting something as simple as zinc supplementation because they believe the underlying narrative of Dr. Gorski’s post, that observations of improvement are “nearly always due to random chance alone”. That is a false narrative. So that’s the tone I have concerns over.

    And more than that — better understanding the natural course of an autistic child’s development could very well yield *new* approaches for treating autism.

    Sure, but I’m a bit skeptical considering the heterogeneous nature of autism, but as a general rule, sure.

    ABA was good for our kid, but probably not so good for others, and I think it largely hinges on the quality of the therapist.

    - pD

  16. BillyJoe says:

    “# passionlessDrone
    @Lizditz -
    I don’t think BillyJoe was claiming that, but rather, relaying the statements of another poster, who himself, claimed:
    a) he had autism
    b) he had no empathy and/or emotion
    Now is the time where I guess we can start to tell that person (jerimiah?) that he doesn’t really have autism, as you know, that’s the kind of thing that is OK in some circumstances.”

    That’s correct. It was not my claim And it was not a general claim. It was the claim of a particular person with HFA.
    (It wa not Jeremiah, though. My reply to something this person said set Jeremiah off on a quest to discover my identity whilst issuing veiled threats of personal harm)

  17. Calli Arcale says:

    That’s sort of what I thought your response would be, pD. It’s the tone that bothers you, more than the content.

    BTW, pica is frequently triggered by nutrient deficiency, so it is indeed not surprising to see it go away with correction of the deficiency. Of course, nailbiting *can* spontaneously resolve…. In fact, in most nailbiters, it eventually does. I do not see how your son’s experience with nailbiting and zinc supplementation has anything at all to do with treating autism.

    “Of course, if someone could show me something that indicates that all children go through a phase where the bite off all of their fingernails, well past the fingertips, then maybe our observations were ‘all random chance’ and his improvement was the result of a developmental spurt.”

    Is everything all black and white? Of course not. You don’t need to know that *all* children go through something to be skeptical of a treatment’s effectiveness. But if *some* do, then it’s cause for skepticism, and you’ll need to know *how many* get over it on their own and when before you make serious conclusions.

    You are convinced zinc cured your son’s nailbiting. That’s possible. You present this as implication that it has something to do with autism, since that’s the context of the discussion, yet plenty of chronic nailbiters are not autistic. (Probably a majority of them; it’s actually pretty common. And yes, to the point of bleeding, yes, well into the nailbed. Some continue into adulthood, by which time they’ve tried everything short of straightjackets. And some have even tried that. But most eventually stop.) But you demand to be shown something indicating *all* children go through a phase like this before you are willing to consider it may have been chance?

    My daughter is a serious nailbiter. I haven’t had to trim her nails in years. It was at least as bad as your son’s. We tried everything. We had her on vitamins, on the presumption of pica since she likes to chew on things. Didn’t do a thing. So there’s my N of 1 against your N of 1. You see how we cannot make a conclusion at this point about the effectiveness of zinc?

    “I am sick to my stomach at the thought of another child *not* getting something as simple as zinc supplementation because they believe the underlying narrative of Dr. Gorski’s post, that observations of improvement are “nearly always due to random chance alone”.

    Well, you go be sick to your stomach. But that is not Gorski’s point. His point is that we know improvement can be due to random chance, but we don’t know how often, and until we have some sort of idea how often, we’re *fooling ourselves* if we act certain that they are not random.

  18. mousethatroared says:

    Calli Arcale “yet plenty of chronic nailbiters are not autistic. (Probably a majority of them; it’s actually pretty common. And yes, to the point of bleeding, yes, well into the nailbed. Some continue into adulthood, by which time they’ve tried everything short of straightjackets. And some have even tried that. But most eventually stop.)”

    Actually, I’ve peeled my nails from childhood to just recently. Don’t bite, just any rough edge or unevenness really bugged me and I would peel it off to the quick. Of course this makes my fingers unsightly, but I always viewed the nuisance of breaking the habit far more work than the benefit of having lovely nails.

    No dietary change has ever effected the habit, nor did taking anti-depressants. But there is one strange thing. A few years ago I had a cortisone shot in my shoulder. A couple weeks later I noticed my nails were much longer than normal. I hadn’t had any urge to peel them. Gradually the urge came back, nails back to their unattractive state. A few months ago, I started taking a medication for a possible autoimmune disease. Once again, after a month or more I noticed that my nails had grown. Again I had forgotten to be bothered by them. I doubt that it’s placebo response, because I’ve taken lots of other medication without that effect. But then again it could be just some radom coincidence, I really don’t know.

    It is sometime hard to know what to do with these unexpected, possible connected, possible coincidental benefits. Sometimes a clinician notices them, someone does trials and presto, you have a new use for an old drug. Sometimes it turns out to be nothing.

    But as the patient noticing the change with no data to go on…it’s hard to know what to make of it. Oxbviously, it’s a small things. So I don’t really need to make anything of it. Just a curiosity, I guess.

    Sorry for the off topic ramble.

  19. Lytrigian says:

    My autistic son is a nailbiter. He probably picked up the habit from his mother, whose nails have been bitten to the quick for years. What cured him of his habit temporarily? He wanted to dress as the Frankenstein monster one Halloween and realized he’d need appropriate fingernails for the right look.

    There you have it. Frankenstein cures autism.

  20. BillyJoe says:

    Nail biting gives me the horrors. I can’t possibly get my teeth anywhere near my own nails. If they accidentally develop a rough spot, I just have to wait till I can get hold of a pair of clippers or a nail file. And watching someone peel their nails back to the nail bed is too painful even to think about…aargh!
    ….and, Michelle, I have a bit of a soft spot for you, so I’m going to pretend someone else wrote that post.

  21. mousethatroared says:

    That’s okay Billy Joe, I understand that many people can not control their irrational aversions to many harmless activities. :)

  22. mousethatroared says:

    Lytrigian – I think you’ve hit upon the crux of one way to break a habit or compulsion. The habit breaker has to see a benefit from changing that is strong enough to make the discomfort in changing worthwhile.

  23. elburto says:

    pD – You know what makes me sick? Statements like this:

    ” If we find a set of parents who did not seek speech therapy, did not seek ABA, did not search out horse riding while being chelated, they will be parents for whom the developmental trajectory of the child was of no real concern to the parent”

    Or, we find parents who, as per the article we’re discussing, cannot access these interventions because they lack the substantial privileges of access to healthcare, disposable income, and free time.

    If someone is working at two jobs just to be able to feed and shelter their family then they’re unlikely to be able to devote substantial swathes of their available resources (in terms of time and money) to one of their children. If they speak Lao or Xhosa instead of English or Spanish, then the climb to access help becomes even steeper.

    Now obviously you read the article, rather than merely skimming for keywords that you could use as platforms to promote a biomeddling agenda, so none of this will surprise you. As you know the article (and original research) states:

    ” . Among young children with severe autism, those most likely to “bloom” are those without intellectual disability and those with more educated, nonminority mothers. Although we are unable to identify the specific mechanisms through which socioeconomic status affects trajectory outcomes, the intervening variables likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services, and many other factors in various permutations. If this heterogeneity in outcomes is associated with parental and community resources, then equal access to early intervention and treatment resources for less-advantaged children is vital.”

    The United States is not a good place to be socioeconomically disadvantaged, full stop. Add a disability or chronic health issue to financial hardship and, whether you’re the patient or the parent, life becomes a lot like trying to empty a lake with nothing more than a fork.

    Think of how much each appointment with your pet quack DAN! doctor cost you. Remember the time it took you to get there and back. If someone’s making $3 an hour (plus tips) as a waitress, has no healthcare benefits and no paid leave, and relies on public transport, how can she afford that option? In fact, how is she even supposed to know it exists? Using wild, uninhibited guesswork here, I doubt her schedule is filled with Autismommies coffee mornings, hanging out on MDC and AOA, and a yearly pilgrimage to FraudismOne.

    If NT children are spectacularly educationally disadvantaged by financial hardship and minority ethnic status, then non-NT kids are screwed.

  24. mousethatroared says:

    elburto – I completely agree with your comment. But, I’d like to add to your statement “Think of how much each appointment with your pet quack DAN! doctor cost you. Remember the time it took you to get there and back. If someone’s making $3 an hour (plus tips) as a waitress, has no healthcare benefits and no paid leave, and relies on public transport, how can she afford that option?”

    It’s questionable if someone could even maintain a waitress job with a younger child with autism. Where do you find appropriate child care? If your child receives Early On, Special Education services that may help, but it’s unlikely that will cover a full time job and it may actually take away from the hours that you can work.

    Some folks are lucky enough to have a grandparent that can help out, but a child with autism is more likely to be too much of a challenge for an older person.

  25. elburto says:

    mouse -

    It’s questionable if someone could even maintain a waitress job with a younger child with autism. Where do you find appropriate child care? If your child receives Early On, Special Education services that may help, but it’s unlikely that will cover a full time job and it may actually take away from the hours that you can work.

    Exactly. Some lucky people don’t understand how much it costs to work. Clothes, transport, childcare, etc. Impoverished people are often in a lose/lose spiral. I hate to think of how hard it must be to function as the mother of a child with ASD who’s also struggling financially. To see them being judged as not caring/not bothered about their child’s progress is literally sickening. I personally know women, friends with children on the spectrum, who struggle desperately even with access to universal healthcare, excellent school and support programmes, and financial assistance.

    How they’d cope in the US is just beyond my grasp. How I’d cope as a disabled adult is not something I can bear to think about, let alone if a child was involved.

  26. Woody says:

    “How they’d cope in the US is just beyond my grasp. How I’d cope as a disabled adult is not something I can bear to think about, let alone if a child was involved.”

    It is not easy. As a parent of two young children on the spectrum in the US, let’s just say we are very fortunate that I have a good salary. My spouse has not been able to return to work (formerly a well-paid professional) due to the time demands of coordinating care for our children.

    Government-paid services only account for a minor fraction of the services my children receive. The intensive early behavioral intervention (ABA therapy mentioned above) is very costly, and not covered by my otherwise excellent health insurance. Even though I make a good salary, if it were not for some investment income, our monthly expenses would put us in the red.

    Suffice it to say that families less fortunate than mine find themselves up the proverbial creek… I have known families who had to make the difficult decision to withdraw their child from the early intervention program that was clearly benefitting them because they simply could no longer afford it.

    This does not even factor in the long term costs – the unemployment rate for adults on the spectrum is obscene. What happens when the parents become old and infirm? It is unlikely that they have been able to save for retirement with the costs of caring for their child(ren). Though there certainly are some adults on the spectrum who have ideal outcomes and are self-employed and could even comfortably support their elderly parents, I suspect it is a small minority.

  27. Woody says:

    that should be “employed”, not “self-employed”…

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