Monday, 23 January 2012

Can you grow out of autism?

An intriguing question to open this post commenting on this study by Heather Close and colleagues* on comorbid conditions and the stability of autism as a diagnosis. In essence the paper suggests two things: (1) autism is rarely a stand-alone condition; a recurring theme on this blog, and (2) autism is not a static condition (see my previous post on diagnostic instability).

To summarise:

  • Based on the 2007 National Survey of Children's Health, over 90,000 parents of children aged up to 17 years old were contacted. 
  • Of the total population, 1,366 children were identified via parental report as having either a past or current diagnosis of an autism spectrum condition. 453 parents said their child had a diagnosis of autism but didn't anymore.
  • Based on age divisions (young children, 3-5 years old), children (6-11 years old) and adolescents (12-17 years old), the authors analysed various responses of background information and the presence of comorbid conditions to ascertain whether there were any differences between those who had a current diagnosis of an autism spectrum condition (ASC) compared with those who had a past but not current (PBNC) diagnosis of an ASC. There were in effect 3 experiments running comparing those with a current diagnosis with those who 'lost' their diagnosis, across the 3 age groupings.
  • The findings: youngest children with a current diagnosis of an ASC were more likely (a lot more likely) to have a concurrent learning disability or delayed development compared with the PBNC group. In the 6-11 age bracket, current diagnosis children were more likely to have past speech and hearing problems and concurrent anxiety issues than the PBNC group. In adolescents, past hearing problems and current speech and epilepsy issues were more likely in the current diagnosis group. Currently diagnosed children across the age groups were also more likely to have more comorbidities than the PBNC group. 
  • The authors suggest that the presentation of these comorbid features, past or current presentation, likely influences whether or not a diagnosis is retained or 'outgrown'.

There are a few media reports and opinions about this work already. WebMD.com has the headline 'Why some children may 'grow out' of autism'.

Whilst very interested in these results, I find myself in a bit of a quandary. On the one hand is the pretty persistent line presented over the years that autism is a 'lifelong condition' which whilst exemplified by the changing/fluctuating presentation of symptoms as a consequence of things like maturation, in essence is immutable in terms of whether someone has autism or not. On the other hand, we have parents reporting in this study that some of their children having had an autism diagnosis, were no longer considered to have a current diagnosis. I suppose one could argue that the authors were not able to independently test these assumptions out either when diagnosis was originally given or after diagnosis was 'done away with' so a degree of subjectivity should be expected. One perhaps cannot also rule out the subclinical presentation of symptoms such like the ideas on the broader autism phenotype.

Having said that, quite a few people over the years have reported similar things in terms of their child no longer appearing to present on the autism spectrum. Few of these cases have been spontaneous; more often that not associated with some kind of intervention or following mis-diagnosis. I make no value judgements on either of these factors.

One of the authors of the current study, Andrew Zimmerman has quite an extensive autism research career which it has to be said, is perhaps slanted more towards the possibility that other factors/conditions/comorbidities seem to be associated with autism. So for example, familial autoimmunity and medical risk of autism, issues related to inflammation and neuroinflammation, and even a role for fever in abating some of the symptoms of autism. The current findings perhaps extend his interest.

What this latest study does reiterate is that a diagnosis of autism should not be the end-point to determining why a person behaves the way they do. Given recent posts on SPAD, CFD and all manner of other conditions potentially more prevalent in cases of autism (glutathione issues?), a diagnosis of autism should really be the starting point to try and ascertain whether these and/or other conditions contribute to the presentation of autism or at least whether they can adversely affect quality of life. Whilst token mention has been made about the impact of intervention on some cases of autism in this current paper, it does not seem beyond the realms of possibility that intervention might have had a role to play (with the caveat that much more targeted research is needed).

So the question remains: can you grow out of autism?

* Close H. et al. Co-occurring conditions and change in diagnosis in autism spectrum disorders. Pediatrics. January 2012.

8 comments:

  1. There are people who attribute my son's improvement to this and "it was probably because he was an only child", they refuse to believe diet played any role in his improvement. I thought perhaps the DSM should include "Only Child Syndrome", where only children lose acquired speech, play skills, motor skills, affection, sleep patterns, are in a continuous state of meltdown and love to stare at lights. (That might help those pesky skyrocketing autism rates too)

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  2. Thanks for the comment Mrs. Ed.

    It is most interesting that so far none of the mainstream media views of this research that I have seen have questioned what potential effect intervention may have had on those 'growing out' of their diagnosis in this study.

    If I was to be a pessimist (which generally speaking I try very hard not to be) I might say that calling any role for intervention into these cases, even some of these cases, might 'rock to many boats'.

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  3. "On the one hand is the pretty persistent line presented over the years that autism is a 'lifelong condition' which whilst exemplified by the changing/fluctuating presentation of symptoms as a consequence of things like maturation, in essence is immutable in terms of whether someone has autism or not."

    The interesting thing, at least to me, is that no one has actually been able to demonstrate that autism is a lifelong condition. It is assumed to be because recovery from autism is relatively rare and because autism supposedly is a "genetic" disorder. If something is "genetic", it has to be a lifelong condition, right? Never mind the autism is genetic line hasn't been successfully proven either, it is based on twin and sibling studies. However, as recent research as demonstrated, what we thought we knew about twins and autism might just be wrong as well...

    The bottom line is that the more you try to justify and quantify the evidence for why autism a lifelong condition, the more you run into what are unsupported assumptions about what autism is and isn't.

    I think the simple answer here is the correct one - autism is not a lifelong condition. If you have evidence that a good number of children once met the criteria for autism but no longer do and that conflicts with the assumption that autism is immutable, then I think the assumption has to go.

    Although I do have to admit that I find people who are die hard advocates of autism being a lifelong condition to be somewhat comical. Here you have a condition that has very few known causes, very few known biological presentations, and is diagnosed solely on the appearance of behaviors and yet you have these advocates who insist that it is a lifelong condition that cannot be changed.

    How can you know that something can't be changed if you don't know what it is?

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  4. Thanks MJ.

    I agree that we remain in a state of 'not knowing' when it comes to outcome (long-term outcome) and autism, perhaps also influenced by a certain amount of dogma with regards to things like genetics (as in equal to 'we can't influence genes').

    I agree also that autism as a description really doesn't tell anyone very much about underlying aetiology and important issues such as the relative impact of comorbidity on presentation both in the short and long-term (as this study suggested some effect).

    I think that things are starting to change (albeit slowly). The Hallmayer twins study (and accompanying editorial) as you point out was perhaps one of the first real inklings of that change. That combined with the rise and rise of the science of epigenetics (which invariably suggests an environmental connection) as a consequence of the relative failure to find those universal genetic links to autism, suggests that the coming years might see a few textbooks being rewritten. Change is however a slow process with lots of confounding issues.

    As mentioned in the post, little attention seems to have been paid to the potential role of intervention in the highlighted cases from this study. I personally would have thought that asking parents a few, sorry a lot more, questions about why diagnosis was not present anymore and their opinion as to what factors may have been important to that factor, would at least provide some pointers for further analysis. Perhaps we have not heard the last from these authors on this issue?

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  5. "the coming years might see a few textbooks being rewritten" lol!

    We are going to a psychiatrist TODAY to see if we can attain accommodations for my son's learning disability...seems he is dyslexic in math and writing, to my estimation. I've been "hanging" with the Dyslexic bunch at twitter rather than autistics, and I'll be damned if the similarities, aquisition of language-wise between dyslexics and auties are quite astounding. Over and over I hear of "thinking in pictures" and "right-brain thinking". He was treated "behaviorally" in school, ritalin included. His dysgraphia and dyscalculia were treated as "laziness". WTH, no wonder school was so hard.

    I started changing over when he told me that he felt "bullied by the curriculum", rather than by teachers or students in school, and that was why he hated it. "Bullied by the curriculum"...sounds like a learning difference, directly!

    I prefer a dyslexia diagnosis, they have better PR. I'll have to see if I can talk the psychiatrist into it.

    Harold Doherty tweeted about this http://www.harboroughmail.co.uk/news/health/growing_out_of_autism_claim_unfounded_1_3550326#.T0Xzdi3gbGE.twitter

    and I googled "growing out of autism" and you came up the first page!

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  6. Many thanks usethebraingodgivesyou.

    There indeed seem to be quite a few overlaps between autism and dyslexia (at least across some cases and areas) which really do deserve more study.

    I note for example a paper published this week: Brief Report: Incidence of Ophthalmologic Disorders in Children with Autism - http://www.ncbi.nlm.nih.gov/pubmed/22350452 which I dare say from my non-expert point of view would potentially point to one or two overlaps.

    As for the 'growing out of autism' headline, there are two pertinent pieces of information:
    (i) the UK NHS Choices website have quite a good overview of one media piece on this - http://www.nhs.uk/news/2012/02February/Pages/children-grow-out-of-autism-claim.aspx
    and
    (ii) the NIMH are also still looking at 'symptom remission' and autism - http://patientinfo.nimh.nih.gov/AutismPediatric.aspx (study 2)

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  7. Sorry if I'm a little aggressive... I'm working on that! As far as language acquisition goes... I have dyslexic tendencies in terms of my writing (physical), but that is a fine-motor skill that is perhaps, like any physical clumsiness, down to my overwhelming processing capacity. By which I mean, while writing I'm am also consciously processing hundreds if not thousands of tasks. I have been known to answer questions weeks later as if the same conversation is continuing and answering multiple individuals simultaneously. However large groups are severely disorienting! I have been speaking from a very early age but not all people with Asperger's are as forward. I could also read at an extremely early age but people had a suppressing affect on this (as did bullying). People with dyslexia are different. They struggle to grasp, maintain and process language, even understand it in sever cases. The difference with Asperger's and autism is that the understanding and processing is there, but the desire and need to use it or the ability to express alien (or perhaps complex) concepts with the simplicity and ease that is expected - is not. You ask either adult or child for a description or an explanation of what the word love represents, and the answer is usually naive, immature and founded on circumstantial views. There are no straight up explanations from people because emotions and opinion cloud reason and logic. In a logical autistic mind that uncertainty is not acceptable thus inadmissible. Not quite dyslexia but as far as phenotype is concerned the same. Take the parable "never read a book by it's cover" as sacred here.

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  8. David, you are very welcome for your comment.

    I know you did post another comment before this one which I have not posted given some of the language which was included. I did this not to censor but rather to keep things cordial as per the ethos of this blog:

    http://questioning-answers.blogspot.co.uk/2011/02/post-0011-v11-etc.html

    Your descriptions of your experiences are indeed very interesting. Dyslexia and related issues, and the 'overlap' or indeed 'difference' with autism / Asperger syndrome is an area which requires much more research attention with specific focus on how processing is involved.

    Only yesterday a speculative paper including the familiar name of Manuel Casanova, he of the minicolumns hypothesis, was published suggesting gyrification issues across a continuum of autism, dyslexia and asymptomatic controls:

    http://www.ncbi.nlm.nih.gov/pubmed/22545198

    This following his other work: http://www.medical-hypotheses.com/article/S0306-9877(09)00549-0/abstract

    I will eventually be posting about minicolumns and Casanova's work in light of some interesting overlaps being described.

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