Can Children with Autism Recover? If So, How?

2 Dec

An interesting new study with that very title found its way into my inbox last month. I’ve taken awhile to blog about it whilst I read, re-read, re-re-read, re-re-re-read it (its 23 pages long – 28 with references) and swapped emails with the lead author and approached an understanding of its implications.

Here’s the abstract:

Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome.

Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.

There’s a number of issues that I found interesting about this paper. First was the identities of two of the co-authors – Marcel Kinsbourne (testified for the plaintiffs in the Autism Omnibus) and Martha Herbert (testified that mould causes autism – case lost).

Second was the criteria used to define ‘history of autism’ and also to define ‘current functioning’. Both seemed pretty stringent to me. First ‘history of autism’ (study members were currently aged between 8 – 18 by the way):

By history: (1) The child was diagnosed with an ASD in early childhood (i.e., by age 5) by a specialist (i.e. someone whose practice is at least 50% devoted to autism). (2) There was early language delay (either no words by 18 months or no word combinations by 24 months). (3) Review by one of our team, blind to current group membership, of early reports (age 2–5) and/or videotapes, with diagnostic formulations elided, confirms early ASD.

Second, ‘current functioning’:

By current functioning: (1) The participant does not meet criteria for any Pervasive Developmental Disorder, including PDD-NOS (at least one symptom in social domain plus one additional symptom), which generally means that no social symptom of ASD is present by best clinical judgment. (2) The participant does not meet ASD cutoff on social or communication domain of the Autism Diagnostic Observation Schedule, (3) any special education services the participant receives are to remediate difficulties with attention, organization, or specific academic difficulties and not to address features of autism, (4) the participant is functioning without an individual assistant in a regular education classroom, (5) VIQ, PIQ, and FSIQ are all at 78 or above (1.5 standard deviations below average), (6) Vineland Communication and Socialization Scales are all at 78 or above.

So recovery is indicated by moving from stage 1 to stage 2. I hope others can give their own opinions in the comment section as to how stringent the two criteria are but it seems fairly impressive to me.

So what happened with these kids? How did between 3 – 25% become recovered (by the terms of the study)?

1) Having relativelyhigh intelligence,
2) Having receptive language
3) Displaying verbal and motor imitation
4) Displaying motor developmentbut
5) Earlier age of diagnosis and treatment
6) Having a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified
7) Use of behavioral techniques (there is a section in the paper expressing caution over the veracity of this finding or at least, its my understanding that there is).

Interestingly, overall symptom severity plays no part in recovery and neither does head growth.

The presence of seizures, mental retardation and genetic syndromes are unfavorable signs.

Something else that seems to play no part:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

I was (obviously) particularly interested in this so I asked the author about vaccination status. The reply was:

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that…

Its a fascinating paper, not least to me personally as it indicates once and for all that vaccinated kids can (and do) recover without biomedical interventions, thus indicating the vaccination plays no causative role in autism.

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24 Responses to “Can Children with Autism Recover? If So, How?”

  1. Schwartz December 2, 2008 at 15:34 #

    Kev,

    Do they make any comments about whether any of the study group included children who suffered from regression? From what you’ve written, it doesn’t sound like it given the strict criteria.

    It is an illogical leap to your final conclusion unless the study group is representative of all Autistic children who recover — highly unlikely given the inclusion criteria.

    What was the study group size?

    Also of interesting note is the remaining symptom of tics. Tics is statistically associated with Thimerosal exposure in at least two studies so far.

  2. Catana December 2, 2008 at 15:37 #

    Overall, that’s a fairly impressive study. I note the absence of one factor which seems to be almost universally neglected — development of strengths. Adults on the spectrum often comment on the strengths which have helped them adapt to an NT world. Some of those strengths are the same as or equivalent to those of intellectually gifted people. And those strengths are also neglected when it comes to teaching/therapy.

  3. Another Voice December 2, 2008 at 16:20 #

    Based upon what I have read, I am not impressed at all.

    3-25%; an eight fold range? Also, having to ask if the children studied had been vaccinated or if any had received chelation; those things should be clearly identified. The co-authors should understand the significance of those factors, having testified as expert witnesses in vaccine trials. Couple those omissions with the lack of specificity in the answers to your questions (by in large, in general) and I feel the credibility of the paper dropping.

  4. Joseph December 2, 2008 at 21:02 #

    The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

    How is that even possible, considering that CAM is used by 40% of autistic children?

    I guess a few possibilities come to mind. Maybe the authors are talking about hard biomed, like chelation. Maybe CAM is generally started late, when the child is still obviously autistic and not so young anymore. Or, as it has been speculated previously, autistic children who do biomed do not make as much developmental progress (although I’m not saying this is a causal relationship necessarily).

  5. passionlessDrone December 2, 2008 at 21:51 #

    How many children were included in the analysis?

  6. kristina December 2, 2008 at 22:07 #

    I was interested in this criteria for recovery, that

    “any special education services the participant receives are to remediate difficulties with attention, organization, or specific academic difficulties and not to address features of autism”

    I’m wondering how it was determined that “remediation” of these certain “difficulties with attention, organization, or specific academic difficulties” is distinct from addressing “features” of autism. It seems that having autism is associated with having certain speech/language/communication difficulties, among other things?

    How much do the authors take into the account the significant changes in the diagnostic criteria and overall understanding of autism?

  7. mayfly December 2, 2008 at 22:09 #

    The article is a review of several papers. None of the referenced papers had anything to do with biomedical intervention. It is difficult to locate acceptable papers on such interventions and recovery.

    As this paper is looking at several previous publications the
    wide range of recovery rates is more understandable.

    On regressive autism, they quote papers saying the expected outcomes for regressed children is about the same to worse.

    Kids on biomed do worse? Where does that come from. I think biomed is a rip off, but as far as having a negative affect on development, I have not seen that.

  8. Joseph December 2, 2008 at 23:10 #

    Kids on biomed do worse? Where does that come from.

    Again, that’s entirely speculative. I wouldn’t make more of it than it is. It has been mentioned in the comments of this blog before: here.

  9. CS December 3, 2008 at 01:52 #

    “but as far as having a negative affect on development, I have not seen that.”

    Biomed certainly had a negative affect on Tariq Nadama, it killed him. Many DAN’s are now experimenting on giving kids nicotine patches now, so they are becoming addicted to nicotine, that’s pretty negative.

    Cornell University found a statistically significant finding that when chelating in the absence of acute metal poisoning that it caused neurological damage in rats.

    Lupron? That can’t be good but I don’t know of any studies.

    How about the kids that are given valium before IV chelation?

  10. Tyler December 3, 2008 at 02:55 #

    PDD-NOS is the “grab bag” of autism. This might partially represent “misdiagnosis” … or at least diagnosis of something that is different in nature than most other diagnosed cases. The “not otherwise specified” seems to be used, by some Dr.s, to sort of saying “it’s autism-like but it’s not archautism”. This isn’t universally applied of course.

    It is also not super surprising that some people eventually fall outside the diagnosis. Besides a different development schedule looking a lot like a life-long “delay” at a young age, and thus very difficult to differentiate merely by symptoms, with an ample amount of intellectual power to learn and apply coping mechanisms you can “hide” a lot.

    I’ll lay good money that non-trivial percentage of those that “recover” are simply successfully hiding the “weird” aspects of what they think and creating a veneer, through whatever means (money helps 😉 ) that is acceptably close to the norm that they no longer. They certainly wouldn’t be the only ones to do so, they might have taken longer though if they had lower level of skills.

    If you doubt this is common then I don’t expect you’ve ever been around people who’s veneer of civility comes off when they have a couple of drinks and lose their coping mechanisms revealing someone very different. I’m pretty sure Billy Joel had a song about this. 🙂

    Well, we all have a face
    That we hide away forever
    And we take them out and show ourselves
    When everyone has gone
    Some are satin some are steel
    Some are silk and some are leather
    They’re the faces of the stranger
    But we love to try them on

  11. Tyler December 3, 2008 at 03:28 #

    Adults on the spectrum often comment on the strengths which have helped them adapt to an NT world. Some of those strengths are the same as or equivalent to those of intellectually gifted people. And those strengths are also neglected when it comes to teaching/therapy.

    Could you be specific? Unfortunately I’ve not talked in-depth with a lot of ASD adults and I’m curious about this (any links would be great too).

    P.S. The one thing successful technique that has come up though in my limited investigations is using Cognitive Therapy and similar approaches.

  12. Tyler December 3, 2008 at 05:17 #

    How is that even possible, considering that CAM is used by 40% of autistic children?

    Good question, it could use some clarification as to what the list is or if they just asked a single simple question and the patients self identified. For example does my son’s use of melatonin count or not? (he sleeps well once he gets to sleep but seems to run on about a 27-28hr clock, right now without using melatonin it’s hard on him to function within the constraints of a 24 hr clock)

    My son, as have most of my other children, been on a GFCF diet trial, and are on effectively on a gluten reduced diet still. But that was only after I [serendipitously] found I had a gluten, and some sort of cow milk, sensitivity. It seemed prudent to make sure it wasn’t something that they’d inherited (a distance relative is a full blown celiac and my grandmother on that side of the family had intestinal cancer, something that celiacs that don’t avoid gluten are at risk for). They now have a much lower gluten intake because there is little in our family pantry that isn’t GF and also with lower gluten intake there is evidence that developing a sensitivity later in life is lower. But would that count as a CAM?

    Personally I’d answer “maybe” and “no” but I acknowledge it as a grey area.

  13. Jen December 3, 2008 at 13:48 #

    How is that even possible, considering that CAM is used by 40% of autistic children?

    Is the number really that high? Maybe it’s just different in my part of Ontario, but I haven’t run into nearly that level of CAM use among the parents that we’ve known in the past 11 years. Maybe melatonin if you count that, but I’ve known very few parents in real life who even go as far as the GF/CF diet. I’d be interested to know if we really are that far off of the average up here, or if possibly it’s just something that parents don’t talk about much here. I’ve certainly known a few people who have “tried everything”, but they seem to be few and far between in my experience.

  14. Joseph December 3, 2008 at 14:30 #

    There are some studies on CAM use by autistic children. See Wong (2008). That’s where I got the 40% figure.

  15. Schwartz December 3, 2008 at 15:56 #

    Jen,

    I certainly wouldn’t expect Ontario to act outside any standard/conventional medical care. Medical services (and thinking) in Ontario is very conservative and slow to change so I would expect different practices in other provinces and especially the US.

    Many of the systems in place are from the dinosaur age…

  16. Tyler December 3, 2008 at 16:35 #

    He seems to include the diet, and that’s apparently a huge chunk of it in North America. I could see this group, because of diagnosis age and the time around when they’d be diagnosed, might be skewed on this. GFCF diet for autism only dates back to 1991, and it takes time for these things to gain traction. Certainly going GF was a huge PITA even 5 years back. Now I can go down to the local “mainstream” supermarket and they’ve got the an isle dedicated to these foods. So those that were progressing earlier might not have seen a need for it, or it was seen as not worth the extra effort, by the time they heard about it.

    It’s interesting to note that my gluten sensitivity has little to do with what the speculated link to autism is, and thus it wasn’t really a CAM in my son’s case though it might get counted as such. I “bloat” (2 slices of bread and I’ll pick up close to 10 pounds within a few days) and have much poorer digestive absorption (I have to take %40 more of a very dose sensitive medication, Strattera). I tested negative on a blood test for celiac but that test has a lot of false negatives. I figured I wouldn’t bother with the endoscope biopsy, which is the gold standard for accuracy, because a celiac diagnosis doesn’t make any real difference to me. I’m still going to actively avoid gluten.

    Likewise when I first gave the melatonin to my son I didn’t know anything about these other claims of helping with autism symptoms. I hadn’t even known about it till I did a Google of “autism melatonin” yesterday. It was just for the sleep difficulty thing, which is well documented and understood.

  17. Prometheus December 3, 2008 at 18:20 #

    Given the wide range of criteria used to define “recovery”, it is not surprising that there is a wide range of “recovery rates”. Even the lowest rate reported in this review, however, is orders of magnitude higher than the “no [i.e. zero percent] autistic child recovers without intensive biomedical intervention” story that we’ve been hearing from Big Autism for the past several years.

    As for the CAM question – the definition of “CAM” is much like the definition of “art”: very subjective. Depending on how you define “CAM” (e.g. Is “prayer” CAM? Is relaxation/meditation “CAM”?), you can get usage rates from 2% to 65% in the general population. I suspect another issue is the willingness of parents to admit that they’ve used “CAM” (i.e. “biomedical” therapies) if they haven’t “worked” (i.e. their use coincided with a period of spontaneous improvement).

    “Biomedical” therapies are a serious “hot-button” issue among the parents of autistic children in my area – more than sex or even politics. Many parents won’t mention whether they have used “biomed” (or have not used “biomed” or have stopped using “biomed”) until they are sure that the person they are talking to is of the same opinion (either using “biomed” or not using it). It may be impossible to tease out that information, especially in a review article.

    The other issue with “biomed” usage is that – at least in my community – a large number of parents of autistic children have tried one or more “biomed” therapies but only a small fraction are still using them or – for matter – ever used them for an extended period.

    The usual response from the “biomed” enthusiasts is to claim “victory” any time a child who ever received any “biomed” therapy gets better – even if the parents of that child deny that the “biomed” therapy “worked”. Strangely enough, the same groups that readily claim that two doses of chelation or six weeks of GFCF diet “cured” (excuse me, “recovered”) an autistic child three or four years after the therapy are also claiming that it can take up to three years (or is it four, now?) for chelation to “work” and also claim that going off the GFCF diet – even by so much as a crumb – leads to “catastrophic regression”. There seems to be a contradiction somewhere.

    We may never know the true usage of “CAM” or “biomed” in autism, but I think that the finding that children can “recover” from autism without “intensive biomedical intervention” is something that parents need to know.

    Prometheus

  18. alyric December 4, 2008 at 01:23 #

    Mayfly wrote:

    “On regressive autism, they quote papers saying the expected outcomes for regressed children is about the same to worse.

    Kids on biomed do worse?”

    No, kids who regress do worse on the whole. Don’t think it matters if they’re on biomed or not, at least, that’s not the point as far as i can see. I wonder if they do worse anyway.

    CAM at 40% is a pretty easy target to reach if you include vitamin supplement usage. CAM practioners always do so that folks think that everybody’s using chiropracters and accupuncturists. They aren’t. It’s a nice piece of misdirection.

  19. Laura December 5, 2008 at 15:25 #

    If they didn’t compare to the “behavioral technique” subjects to a controlled sample, then why would anyone put any stock in the hypothesis that the behavioral therapy is responsible?

    Also, am I to understand that a child without imitation skills does not differ from a child with imitation skills, with respect to symptom severity?

    I’m calling bullshit on this one.

  20. Sigma December 5, 2008 at 17:52 #

    Think about it. If 3-25% of the kids recover then a bio-med doctor can claim recovery in 3-25% of their clients. If they are selective, the percentage will go even higher. Treatments that improve alertness or attentiveness may goose these numbers even higher.

    Some may even believe they are the real reason.

    On the other hand, intelligent kids with milder impairments could be taught better communication skills and/or to behave more normally. Practice may not make perfect, but it can make you respectable.

    I will add that my “recovered” son does prefer to stay at home and do his own thing. He is a classic introvert, but he does much better when he is forced to go out.

  21. Kev December 5, 2008 at 19:33 #

    Laura – I mentioned your first point also. no reply as yet.

Trackbacks/Pingbacks

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    […] by Molly Helt et al. out about recovery from autism in the December Neuropsychology Review. Kev at Left Brain/Right Brain has an overview; here’s the abstract: Although Autism Spectrum Disorders (ASD) are generally […]

  2. Autism Blog - » Blog Archive » Age of Autism claim ‘hundreds of case reports’ of recovered children - December 16, 2008

    […] that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% […]

  3. What is the Children’s Medical Safety Research Institute? – VAXOPEDIA - May 17, 2017

    […] Can Children with Autism Recover? If So, How? […]

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