Showing posts with label optimal outcome. Show all posts
Showing posts with label optimal outcome. Show all posts

Saturday, 23 March 2019

Autism: a spectrum, dimensions or clusters? How about a multi-dimensional cluster of spectrums?

A write-up (see here) of the paper by Hyunsik Kim and colleagues [1] was the initial impetus for formulating this blog post, but it quickly escalated into something a little larger when the findings from Frank Duffy & Heidelise Als [2] also popped up.

The question at hand: how should one conceptualise autism? Is it truly a spectrum as per the Lorna Wing proposition, or is it something a trifle more complicated? As per the title of this post, should we perhaps be thinking about autism as some sort of "multi-dimensional cluster of spectrums?" I'll come back to that idea shortly.

Well, it's not for me to make definitive conclusions on this blog. Science rarely, if at all, provides an absolute 'truth' but rather the probability that something is approaching truth. Such a notion goes double when you consider the singular label of autism and the huge heterogeneity that it encompasses. There are no easy answers and probably little or no truths.

Starting with the Kim paper (including some notable names such as the surname 'Gadow') and the name of the research game was modelling, modelling in a computational sense. So: "The sample comprised 3,825 youth, who were consecutive referrals to a university developmental disabilities or child psychiatric outpatient clinic." The CASI-4R - formulated by Prof. Gadow - was the schedule administered, which includes "an ASD [autism spectrum disorder] symptom rating scale" among other things. Some nifty statistics were applied to the data and the initial findings were 'tested' on a further group of over 2500 children.

Results: "Based on comparison of 44 different models, results indicated that the ASD symptom phenotype is best conceptualized as multi-dimensional versus a categorical or categorical-dimensional hybrid construct." And the dimensions mentioned in that 'multi-dimensional' statement? Well, lucky for us they were something familiar: "social interaction, communication, and repetitive behaving."

Then to the Duffy/Als paper (again, these authors are no stranger to autism research) and a similar starting point: "The authors postulate that the broad definition of an omnibus 'spectrum disorder' may inhibit delineation of meaningful clinical correlations." Indeed, very familiar (see here). The conclusion: "evidence that an objectively defined, EEG [electroencephalogrambased brain measure may be helpful in illuminating the autism spectrum versus subgroups (clusters) question." The tool used by Duffy/Als in their study was something called NbClust "specifically designed to provide an objective means, i.e. independent of investigator choice, to identify the ‘optimal’ cluster number within a population." Said tool was applied to EEG data derived from 400 participants diagnosed with an ASD. Statistics and more statistics applied to the data revealed that: "430 subjects diagnosed as being on the autism “spectrum” and represented by 40 EEG coherence factors..., fell into two distinct clusters." These autism spectrum clusters differed from each other and importantly, from "554 subject neuro-typical control group subjects, not involved in the clustering process." Interesting results but an unfortunate use of the term 'neurotypical' (see here). Duffy & Als conclude that their data support a view whereby "autism disorder should not be seen as a continuous spectrum." So Kim & Duffy/Als arrive at similar conclusions: a singular 'spectrum' idea of autism is probably not the best way of conceptualising the essence of the label.

I would perhaps add in a little more evidence for the idea that 'multi-dimensional clusters of spectrums' is a potentially better fit. I used the words 'spectrums' (plural) because there is a growing body of evidence to support the idea of more than one 'type' of autism. I say that from the perspective of evidence for autism being 'acquired' under several different circumstances (e.g. accompanying inborn errors of metabolism, linked to exposure to certain infections or diseases, etc). There's also evidence that clinical profiles under the umbrella term autism are not uniform (e.g. regressive autism, the so-called 'optimal outcomers', differing developmental trajectoriesetc). And when one looks at something like the success (or not) of intervention, it's plain to see that there is no universally shared genetics and/or biology of autism in the singular either (see here and see here for examples). Add in the idea that autism rarely appears in a diagnostic vacuum (see here) and that said comorbidity might 'cluster' in some subgroups of autism (see here), and I hope you can see why 'plural' might be a good addition to any attempt to re-conceptualise autism: spectrum, dimension, tapestry, cluster or however you think it should be defined...

Oh, and since we're on the topic of trying to conceptualise autism, a new book out recently has been reviewed in Nature (see here). It talks about how "conclusive findings about sex-linked brain differences have failed to materialize" which is particularly apt in relation to previous talk about 'extreme male brains' as a way of conceptualising [some] autism (see here). One quote I particularly liked from the review is this one: "The brain is no more gendered than the liver or kidneys or heart."

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[1] Kim H. et al. Quantifying the Optimal Structure of the Autism Phenotype: A Comprehensive Comparison of Dimensional, Categorical, and Hybrid Models. J Am Acad Child Adolesc Psychiatry. 2018 Oct 29. pii: S0890-8567(18)31894-X.

[2] Duffy FH. & Als H. Autism, spectrum or clusters? An EEG coherence study. BMC Neurol. 2019 Feb 14;19(1):27.

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Thursday, 14 March 2019

"Our findings beg the question, what is going on with these children who no longer have an ASD diagnosis?"

The quote heading this post - "Our findings beg the question, what is going on with these children who no longer have an ASD [autism spectrum disorder] diagnosis?" - comes from some media coverage of the findings reported by Lisa Shulman and colleagues [1]. Shulman et al (bravely) set about examining an important phenomenon in autism research and practice circles: those who were previously diagnosed as being autistic / having autism but at a later date 'no longer met the diagnostic criteria for autism'.

I've talked about these so-called 'optimal outcomers' quite a bit on this blog (see here and see here and see here for examples). I know such discussions aren't everyone's cup of tea, particularly those who see autism as so much more than a diagnostic label, perhaps akin to an identity. The fact of the matter is however that there is what I would call 'substantial evidence' in the peer-reviewed science domain and beyond that the idea that 'autism is a lifelong condition/disorder' does not necessarily cover the huge heterogeneity encompassed under the label autism. Some people, for whatever reasons, do not reach critical diagnostic cut-off points for autism on a lifelong basis.

So, what did Shulman and colleagues do and find? They reviewed the clinical records of over 500 children who were diagnosed with autism or autism spectrum disorder (ASD) at a specific clinic. Most were aged around 3 years old when first diagnosed and were followed up about 3-4 years later. Importantly most of the children participated in one or more intervention programs aimed at improving skills and the like and (hopefully) quality of life. Again, although not everyone's cup of tea, the words 'applied behavioural analysis' (ABA) are also mentioned as an intervention; something that has been discussed in the context of optimal outcome before (see here).

Shulman et al noted that 38 children, equating to around 7% of their group (38/569), "subsequently experienced resolution of ASD symptomatology and no longer met diagnostic criteria for ASD at follow-up." This figure (7%) is not a million miles away from other figures noted in other independent studies (see here and see here).

Further examination of records however revealed that not meeting diagnostic cut-off points for autism did not necessarily mean 'symptom-free' as various other symptoms/conditions were noted in about two-thirds of their 'optimal outcomers'. This included language disorders, attention-deficit hyperactivity disorder (ADHD) and even the signs and symptoms of psychosis in a few. Three of the 38 optimal outcome children were noted to be completely symptom-free (described as 'recovered from autism' with no other issues); something that has again been noted in other studies too (see here).

Then back to that quote titling this post: what is going on with these children who no longer have an ASD diagnosis? I'm sure some people will put it wholly down to initial misdiagnosis. Y'know, something along the lines of 'they weren't autistic in the first place' despite the fact that they previously met clinical cut-off points for a diagnosis. Minus sweeping generalisations, misdiagnosing autism is not something that can be completely taken off the table as per other examples in the peer-reviewed literature and beyond (see here and see here). Indeed, if one ventures down the pathway of misdiagnosis as accounting for results such as those by Shulman and colleagues, one must logically then assume that such misdiagnosis is pretty widespread (at least in 7-12% of cases of autism). Such a situation also plays into other ideas too; particularly how self-diagnosis of autism is even more dangerous than has been hitherto suggested (see here and see here) with regards to the risk of misdiagnosis.

Other people might talk about things like 'masking' as accounting for such optimal outcome, where symptoms are merely being consciously hidden by those with autism (see here). It's an important area of study by all means but seriously ask yourself the question: how likely is it that a 6 or 7-year old child would be able to mask some fundamental signs and symptoms of autism so as to mislead a professional clinician that they didn't have autism having previously met cut-off points? Adults, yes perhaps some (see here). But young children? Be honest now...

Personally, I'm inclined to believe that at least some of those optimal outcome cases are genuine. That is, children (and adults) did meet the diagnostic criteria and clinical cut-off points for autism (including the criteria about symptoms significantly affecting day-to-day life) and then for whatever reason(s) symptoms abated. Intervention certainly could have played a role, but I'm also inclined to believe that behavioural intervention in particular, does not have the power to render someone who was autistic to be not-autistic. I know some big claims have been made about certain interventions down the years, but I've seen little [longitudinal] convincing evidence in the peer-reviewed literature yet.

There must be other factors at work. There must, for example, be a biological element to this. And as one example, just head back to all those discussions about certain types of infection potentially *leading* to the presentation of autism or autistic traits (see here and see here) as a possible template, and the outcomes mentioned for some. One possibility at least.

Much like discussions on another sometimes contentious topic - regression and autism (see here and see here) - there's enough peer-reviewed science literature to suggest that optimal outcome (or however you want to describe such 'growing out of' issues) is a very real scenario for some. Not all, but for some. And so once again the call goes out to start studying the genetics and biology of these so-called optimal outcomers, and then ascertaining whether any findings might have some important implications more widely for the [plural] label of autism...

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[1] Shulman L. et al. When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains? J Child Neurol. 2019 Mar 12:883073819834428.

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Tuesday, 4 December 2018

One more time... (roughly) 1 in 40 children with parent-reported autism in the US

Consider this short post an extension of another recent entry on this blog talking about new data observing that the estimated autism prevalence rate (parent-reported) is around 1 in 40 children in the United States (US) (see here). That entry was based on the paper by Michael Kogan and colleagues [1] and their examination of data "using the 2016 National Survey of Children's Health (NSCH)" initiative.

Enter then another piece of research published little over a week after the Kogan study from Guifeng Xu and colleagues [2] which concluded that: "In a large, nationwide, population-based study, the estimated prevalence of ever-diagnosed ASD [autism spectrum disorder] was 2.79% among US children in 2016." In case you were wondering, 2.79% or 2.8% roughly translates as 1 in 36 children. Xu and colleagues, I might add, are no strangers to prevalence studies on childhood neurodevelopmental disorders (see here and see here).

Both these studies have attracted some media attention (see here and see here) mainly because they show a prevalence rate quite a bit higher than the recent CDC (estimated) autism prevalence figures - 1 in 59 8-year olds - published earlier this year (2018) (see here). Those media reports also seem to make quite a big deal of the 'parent-reported' nature of the figures (both derived from the NSCH initiative). As I mentioned in my last discussion of the Kogan paper, a quote from the lead author Michael Kogan is important in the context of those parent-report 'issues' that some people seem to have: "We know that in terms of having a major condition like autism, parents are usually pretty good reporters compared to medical records." Indeed they are.

Other details to add? Well, the Xu paper also reported on "state-level prevalence of ASD in the United States." They observed variations in the reported prevalence of autism (ASD) across the different states: "The state-level prevalence varied from 1.54% (95% CI, 0.60-2.48) in Texas to 4.88% (95% CI, 2.72-7.05) in Florida." Little explanation is given about such a discrepancy in their paper and so further research is implied.

Also: "Among those who had ever been diagnosed as having ASD, 92.79% (95% CI, 90.19-95.39) reported currently having ASD." This is interesting. Allowing for the fact that the diagnosis of autism or ASD is often more of an art form than a scientific endeavour, I did wonder whether the loss of about 8% of children who were previously diagnosed with autism but did not report currently having autism might overlap with the 9% figure with regards to the term 'optimal outcome' (see here). Y'know, the ever-growing body of peer-reviewed research that seems to suggest that for some people, a diagnosis of autism is not necessarily 'lifelong' (see here) (even if 'optimal outcome' is not necessarily the best phrase to use). Again, further research is implied.

For now however, we can conclude that there is : "a relatively high prevalence of ASD among US children" mirroring that in other parts of the world (see here for example). We really need to be asking questions like 'why?' and also 'are the relevant mechanisms in place to ensure that money, resources and services are directed towards this growing population?'

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[1] Kogan MD. et al. The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children. Pediatrics. 2018 Nov 26. pii: e20174161.

[2] Xu G. et al. Prevalence and Treatment Patterns of Autism Spectrum Disorder in the United States, 2016. JAMA Pediatrics. 2018. Dec 3.

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Thursday, 22 November 2018

"The Camouflaging Autistic Traits Questionnaire (CAT-Q)"

There are quite a few reasons why the findings from Laura Hull and colleagues [1] are to be welcomed. Their report detailing the development and validation of the The Camouflaging Autistic Traits Questionnaire (CAT-Q) covers an important area of autism research and practice that has hitherto been quite extensively discussed in lay circles but not readily quantified in scientific ones.

So: "Social camouflaging is defined as the use of strategies by autistic people to minimise the visibility of their autism during social situations." Further: "Camouflaging is driven by the desire to ‘fit in’ so as to appear non-autistic, and to form relationships with others, which may be harder to achieve when the person presents autistic behaviour." Discussions about camouflaging/masking in the context of autism have figured in some peer-reviewed research already; stretching from some worrying data on the risk of suicidality (see here) to discussions about friendship experiences (see here) to potentially hindering assessment and diagnostic outcomes (see here). The difficulty so far however, is a lack of instruments able to accurately quantify camouflaging...

Hull et al set out to develop their questionnaire to fill the gap between lay reports and science, and perhaps eventually provide some data pertinent to questions like: "Who, among the many different autistic people, camouflages their autism? Do autistic girls and women camouflage more than boys and men, and does this partly account for gender disparities in the rate and timing of diagnosis? What is the relationship between camouflaging and mental health outcomes?"

I won't bore you with psychometric details of how the CAT-Q was developed and validated. Suffice to say that it was developed from "autistic adults’ experiences of camouflaging" combined with initial testing results from several hundred people both on and off the autism spectrum. That's not to say there aren't issues to consider with for example, the use of an on-line survey or that "the self-report CAT-Q only measures individuals’ own reflections/perceptions of their camouflaging behaviours, and is thus limited in its use to those who are able to reflect on their own behaviours and provide insight to their motivations." But it does represent a good first effort to look into this important area. I'd also hat-tip the researchers for another part of their study protocol: "Those who reported being self-diagnosed were automatically excluded from the study and did not complete any further questions." I support this on the basis that self-diagnosis does not necessarily mean accurate diagnosis (see here and see here) no matter how many people would wish it to be so.

I was also interested to read about the authors' findings breaking down camouflaging into some smaller units. So: "Compensation (strategies used to actively compensate for difficulties in social situations), Masking (strategies used to hide autistic characteristics or portray a non-autistic persona), and Assimilation (strategies that reflect trying fit in with others in social situations)." Such descriptions are important insofar as putting some scientific flesh onto the bones of social camouflaging and the possible processes/motivations behind it.

What else? Well, there is a need for more investigation in this area. The authors have already highlighted some of the areas that need more study (who, males vs females, mental health outcomes). Minus any sweeping generalisations and without trying to furrow any brows, I'd also add that study on camouflaging might also be something to consider in another autism-related context: those presenting with so-called 'optimal outcome' where some people who were previously diagnosed and presented as autistic, no longer do so (see here and see here). I'm not saying this to somehow imply that all those who have experienced a 'loss of diagnosis' are somehow all camouflaging their symptoms. But it would be interesting to look-see whether this could explain a proportion of cases and indeed whether some camouflaging might not be as negative as some people might think (see here)...

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[1] Hull L. et al. Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q). J Autism Dev Disord. 2018. Oct 25.

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Monday, 8 October 2018

On autism symptom trajectories and diagnosing autism late...

It's another one of my mash-up posts today, as two paper are brought to the blogging table. The first paper is from So Hyun Kim and colleagues [1] and looked at the rather interesting topic of differing symptom trajectories in the context of diagnosing autism. The second paper by Sally Ozonoff and colleagues [2] follows in a similar vein in terms of their analysis of children "who had undergone multiple comprehensive assessments in preschool and were determined to be ASD [autism spectrum disorder]-negative, only to meet criteria for ASD when tested in middle childhood."

Both these paper originate from well-respected autism research groups and appear in the same respected journal (Journal of the American Academy of Child & Adolescent Psychiatry). The common theme between them is that within the significant heterogeneity seen under the label of 'autism', there are various different developmental and presented symptoms trajectories, some of which (a) are not as stable as one might imagine, and (b) do not seemingly follow the oft-used assertion that 'autism is present and manifests from birth'. Indeed, on that last point, the implications are that autism is sometimes very much associated with regression (see here) and onward, that genetic and/or non-genetic post-natal factors may very well influence some children reaching clinical cut-off thresholds for a diagnosis of autism (see here for example).

So, to the Kim paper first: authors looked at over 900 "observations of the Autism Diagnostic Observation Schedule (ADOS)" from nearly 150 young children. They were specifically looking at symptoms trajectories based on those ADOS scores and whether or not 'clusters' of similar symptom trajectories were evident. The answer: yes, yes there were some different clusters of symptom trajectories noted. Not six developmental trajectories as per other research (see here) but four clusters: "Nonspectrum ∼25%; Worsening ∼27%; Moderately-Improving ∼25%; Severe-Persistent ∼23%)." Authors also report how: "Trajectory clusters varied significantly in the proportions of confirmatory ASD diagnosis, the level of baseline and final verbal/nonverbal abilities, and symptom severity."

Then to the Ozonoff paper: "Fourteen children met inclusion criteria for the Late Diagnosed group and were compared to a large sample of high- and low-risk siblings from the same sites who had ASD or typical development (TD) outcomes at age 3." Authors focused in on these 14 children and concluded that: "Seven showed very little evidence of ASD in preschool, while seven demonstrated subtle, subthreshold symptomatology." They also suggest that their results identifying a small but important group of children who seemingly first present with 'typical' behaviour but then 'grow into' the presentation of autism "shed light on reasons why the mean age of ASD diagnosis remains over 4 years." Indeed (see here).

I don't really need to say much more than I have already on these studies. Aside that is, from reiterating that the autism spectrum is truly wide and heterogeneous in both symptom presentation and also it seems, with regards to symptom onset and stability too. Alongside other research (see here) talking about how the presentation of autistic signs and symptoms wax and wane for some, I'm wondering when autism research is going to start looking beyond just presented behaviour, at whether for example, genetic and biological 'changes' might accompany such fluidity in behaviour and 'cluster' differences. Y'know, the same way that another group seemingly heading in the opposite direction - those who 'lose their diagnosis' (see here and see here) - also need to be closely investigated from a biological point of view too. It's only when we have such biological data that we can then start meaningfully probing the possible hows-and-whys...

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[1] Kim SH. et al. Variability in Autism Symptom Trajectories Using Repeated Observations from 14 to 36 Months of Age. Journal of the American Academy of Child & Adolescent Psychiatry. 2018. Sept 5.

[2] Ozonoff S. et al. Diagnosis of Autism Spectrum Disorder After Age 5 in Children Evaluated Longitudinally Since Infancy. Journal of the American Academy of Child & Adolescent Psychiatry. 2018. Sept 3.

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Wednesday, 3 October 2018

Yet more evidence suggesting that 'lifelong' is not an accurate description of some autism

The findings reported by Amaria Baghdadli and colleagues [1] didn't really come as a great surprise to me. In their study designed to "investigate the adaptive trajectories and their risk factors in ASD [autism spectrum disorder]", researchers reported that just over 5% of their cohort initially categorised as having autism "fell under the ADOS [Autism Diagnostic Observation Schedulethreshold" at a later point in time. 'Fell under the ADOS threshold' translates as not meeting the criteria for autism on one of the gold-standard assessment instruments (that's assessment, not screening) and by inference, not being autistic. Important too was another statistic from their study: "11.9% converted to atypical autism" and: "Most atypical autism diagnoses were unstable."

The Baghdadli study was quite an extensive one. We are told that participants were "prospectively followed" from childhood to adulthood with assessments (including the Vineland Adaptive Behaviour Scales) covering a period of 15 years. Outside of some participants seemingly exiting the diagnosis of autism, authors also talked about different trajectories noted among their cohort that ties in with lots of other research on this topic (see here and see here). The authors concluded that: "changes in diagnostic, speech, and adaptive status are not uncommon, even for individuals with low measured intelligence or apparent intellectual disability, and are sometimes difficult to predict." It's interesting too that: "One-third of children who are nonverbal at 5 years are verbal within 15 years, mostly before 8 years of age."

Minus any sweeping generalisations, I appreciate that talk about the 'instability' of presented symptoms/traits/characteristics and autism is not well received in some quarters. Despite study after study after study being published in the peer-reviewed science domain suggesting that, for some, autism is not a lifelong condition by diagnostic standards, there is a reluctance for some people to accept such data. I've heard for example, people talking about such a reversal of symptoms in the context that 'they weren't autistic in the first place' as if such commentators have some special insight into often complete strangers that surpasses professionals with years of clinical experience. I also don't doubt that talk about masking and camouflaging of symptoms, whilst legitimate in the context of [some] autism (albeit with a lot more science needed), might also eventually be used as another explanation too if it hasn't already. But please, don't tell me that preschoolers are also masking during their various assessments (see here)...

The fact remains that the peer-reviewed science on this topic is pretty unanimous insofar as autism not being 'lifelong' for everyone (see here). And yet again we need further investigations on this topic to elucidate whether a change in overt symptom profile heading towards asymptomatic also means changes in biological parameters or genetic functions/expression. Whether one day it might even be possible to predict who will fit into such a categorisation. I'm also keen to see further work being carried out around the idea that losing a diagnosis might have some pretty important effects on other quality of life affecting labels/symptoms/states (see here) that seem to be over-represented in relation to autism (see here). And then a final question: what role does intervention potentially play in such unstable behavioural profiles (see here) and I'm not just talking about 'behavioural' intervention either?

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[1] Baghdadli A. et al. Adaptive trajectories and early risk factors in the autism spectrum: A 15‐year prospective study. Autism Research. 2018. Oct 1.

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Monday, 24 September 2018

"This goal is basically to find out what’s happened to these kids since age 8."

Credit: Disability Scoop 23 August 2018
It's another news report that provides the blogging fodder today, rather than a peer-reviewed science paper. No, this does not signify a significant shift in the aims and objectives of this blog away from peer-reviewed science material; rather I'm just commenting on something that might turn out to be quite important to the autism spectrum and will probably appear in the peer-reviewed science domain at some point. The news report in question (see here) is titled: CDC Expands Autism Monitoring Efforts.

CDC refers to the US Centers for Disease Control and Prevention, and the report is pertinent to their continuing efforts to chart the estimated prevalence of autism in the United States (see here and see here for some examples). This is done to a large extent via the Autism and Developmental Disabilities Monitoring Network (ADDM), with statistics based on the number of eight year olds estimated to be diagnosed with autism or an autism spectrum disorder (ASD). Why 8 year olds? Well, I assume it's because this is an age where autism will (*should*) be diagnosed and avoids any earlier years diagnostic confusion and the like.

But it appears that this initiative does not want to just remain focused on 8 year olds as we are told that: "the agency wants researchers at up to two sites to look at 16-year-olds who were previously identified as having autism symptoms in the network’s tracking when they were age 8." Further: "This goal is basically to find out what’s happened to these kids since age 8."

The rationale behind such a decision is a noble one. It's about looking at whether children diagnosed with autism/ASD "have other health conditions and what types of services they are receiving at school and otherwise." 'Other health conditions'? Erm, I'd hazard a guess and say yes, yes they will typically have some other health conditions (see here) also presenting. It's an agenda that also fits in well with the partial shift in focus from children on the autism spectrum towards teens and adults with autism. As for the 'services they are receiving at school' angle, well, this could also be important in terms of best practice too. I say that mindful of the fact that over here on the other side of the Pond, there has been some significant legal movement on schooling in the context of autism recently (see here).

But there is another aspect to such a decision by the CDC that might also be interesting to look at: that pertinent to the stability of an autism diagnosis (see here and see here for examples).

I know some people don't like to talk about the observation that autism, for some, is not necessarily a lifelong diagnosis (see here). The idea that within the huge heterogeneity included under the label of autism not everyone has a stable presentation across the lifespan is a jarring concept, particularly in the context that some people see their autism as so much more than just a diagnostic label. I hear words like 'masking' and 'camouflaging' being used more often to potentially explain why some people don't meet the diagnostic cut-offs for autism/ASD having previously done so. This may well apply to some people, but I don't think this represents an intellectually satisfying universal explanation for such a phenomenon and denigrates a potentially important finding. That also, 'losing a diagnosis' might impact on other issues 'over-represented' in relation to autism (see here and see here) provides further evidence for something other than masking potentially going on (unless the act of masking is somehow 'protective against' the likelihood of psychiatric comorbidity occurring alongside autism?)

I don't want to pre-empt any decisions from the CDC about their shift in focus and what they will and won't look at. Guaranteed that if such a proposal comes to being, the data will reveal something interesting and important, moving forward from just the autism 'numbers game'. If however, diagnostic stability does crop up as part-and-parcel of the new CDC autism prevalence agenda, I daresay that more research resources will be put into looking at the hows-and-whys of this issue. And perhaps too important areas like whether there are genetic and/or biological 'changes' associated with not subsequent fulfilling the diagnostic criteria for autism will also start to figure.

To close, I'm going to link again to the recent-ish findings from Bal and colleagues [1] suggesting that "some older adolescents and adults with ASD may not exhibit the same difficulties observed in young children with ASD" as a template for further study in this area. This, as part of a recognition, that "some will be largely free from symptoms of the disorder by adulthood" [2] (see here for my take) observed by some authors. Feathers will no doubt be ruffled.

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[1] Bal VH. et al. Autism spectrum disorder symptoms from ages 2 to 19 years: Implications for diagnosing adolescents and young adults. Autism Res. 2018 Aug 12.

[2] Lord C. et al. Autism spectrum disorder. Lancet. 2018 Aug 11;392(10146):508-520.

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Thursday, 28 June 2018

'Growing out of autism' was talked about way back in 1993

I appreciate that for some people mention of the words 'growing out of autism' in the title of this post will be met with a furrowed brow. I appreciate that the very sweeping generalisation that all autism that is, has been or ever will be, is lifelong and immutable is something that some people adhere to almost religiously, as words like 'oh, they weren't autistic in the first place' ring out in some quarters to counter such 'growing out of' sentiments. I'm certainly not going to be able to change anyone's mind, and neither do I seek to.

But the idea that autism, for some, is not lifelong is something that is very evident in the peer-reviewed science domain and beyond. I've talked about it on a few occasions on this blog (see here and see here) and how 'subsequently not fulfilling the diagnostic criteria for autism' having previously done so, may have some quite profound implications beyond just the core presentation of autism (see here).

Recently PubMed decided to list the paper by Anne-Liis von Knorring & Bruno Hägglöf [1] published way back in 1993 (the year we were all asked to 'Shake the Room'). Theirs is an interesting paper insofar as providing a window on autism research decades back; even referring to a time when the term 'childhood psychosis' was still being used.

They report 'follow-up' results of a group of children and young adults residing in Northern Sweden. Previously diagnosed with childhood psychosis, all cases were re-evaluated and: "According to DSM-III-R, 38 children met the criteria of "autistic disorder"." Authors reported on various aspects of behaviour some 8-9 years later for 34 of the original 38 participants, and what happened to signs and symptoms in terms of things like stability.

For most participants, there was little change in their diagnostic status. Autism for the majority, was lifelong and indeed for some, showed "a mildly deteriorating course" but typically with some improvements in language and communication. The authors also mention how: "In one case symptoms of schizophrenia developed" which kinda taps into another area of increasing interest these days concerning the over-representation of psychiatric comorbidity in the context of autism (see here).

But then, something interesting: "Only one boy had "grown out of" autism without showing any autistic-like symptoms at all." Yes, it's only 1 out of 34 (two others from the original cohort who did not take part in the follow-up study were reported to be "well-functioning employed adult young men living by themselves") but nonetheless...

I've often pondered why 'growing out of autism' has not been received with open arms by some. I've come to the conclusion that there are likely a few reasons why.

So first, the idea of 'autistic identity' - where autism is seen as so much more than a diagnosis - might have something to do with it. Although identities change, modify and adapt throughout the lifespan, there is perhaps something 'safe' about the idea that being defined as 'autistic' is a constant, and the sense of belonging that perhaps follows, alongside terms like 'neurodiversity' gaining popularity. The evidence suggesting that such a constant might not be a universal constant for everyone is perhaps jarring for some. Indeed, from a neurodiversity point of view, those who are no longer autistic should perhaps then be viewed as transitioning to neurotypical perhaps...?

Allied to this sense of 'identity' I do wonder if some of the terminology associated with 'growing out of autism' might also play a role in how the concept has been viewed down the years. Take for example the term 'optimal outcome' made in reference to those who were were once autistic but at a later point don't hit clinical cutoff points. The insinuation is that where a diagnosis of autism or the presentation of significant autistic traits persists, there is an opposite: 'not optimal'. You can perhaps see how this paints autism, particularly in the context of that autistic identity. And it is indeed timely that there is research chatter about 'reframing optimal outcome' [2] recently...

Similarly, the idea of 'growing out of autism' also taps into the 'medicalisation' of the label. So, minus making too many direct comparisons, when individuals don't meet the clinical thresholds for the label (having previously done so), one could argue that this is evidence that some autism is akin to other medical diagnostic labels that wax and wane, whether naturally or following intervention. I daresay also that autism as seemingly being transient for some, also sits in the same domain of autism being 'acquired' for some. Y'know, those various examples in the peer-reviewed literature that suggest that infection (viral, bacterial, etc) can lead to autism (see here) or that autism appearing alongside various inborn errors of metabolism (see here) is a reality too.

I'm just opining as an outsider looking in, but these are some of the reasons that spring to mind for the seeming lack of interest (even disdain in some quarters) for such a group. Minus any sweeping generalisations from me, all of those previous points have collectively been noted in another context: sexuality...

Personally, I don't see such 'growing out of autism' cases as a threat to either identity or any other aspect of autism. You've probably heard of the term 'if you've met one autistic person, you've met one person with autism' and well, that goes as much for those who 'lose' their diagnosis as it does for anyone else. Anyone with some scientific curiosity should really be asking the question 'why?' Why do some people manifest autism (and reach all the diagnostic cutoff points for autism) at one part in their life but not another? Is it about masking or are there more complicated processes - psychological, biological, genetics - at work?  What role does intervention play (if any)? And what lessons can we learn from such a group outside of the idea that autism is a truly heterogeneous label?

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[1] von Knorring AL. & Hägglöf B. Autism in northern Sweden. A population based follow-up study: Psychopathology. Eur Child Adolesc Psychiatry. 1993 Apr;2(2):91-97.

[2] Georgiades S. & Kasari C. Reframing Optimal Outcomes in Autism. JAMA Pediatrics. 2018. June 25.

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Thursday, 23 November 2017

Yet more "lost their diagnosis" and autism research. Not for all but...

The question posed in the title of the paper by Solomon and colleagues [1] - "What will my child's future hold?" - examining the "phenotypes of autism spectrum disorder (ASD) based on trajectories of intellectual development from early (ages 2-3 ½) to middle (ages 5-8) childhood" - is an interesting one and a question that many parents/caregivers will probably ask or have asked at one point or another.

It's also an important question because throughout all the sweeping statements that have been made about the autism spectrum past and present, the generalisation that ALL autism is 'lifelong' is one of the more popular ones despite [peer-reviewed scientific] evidence pointing to the contrary (see here for example).

By saying all that I'm not trying to minimise the effect(s) that autism has on the lives of many, many people day-in and day-out throughout their lives and the varying requirements for suitable support. Just that, as per the notion 'if you've met one autistic person, you've met one person with autism' (or words to that effect), the experience(s) of continually hitting the diagnostic thresholds across the lifespan is likely to be different for different people as a function of many, many different factors. I say this acknowledging for example, the rise of 'compensation' in the context of autism recently (see here).

Solomon et al drew on data derived from the Autism Phenome Project including over 100 children "initially diagnosed with ASD." Researchers were particularly interested in cognitive trajectories as measured by IQ between 2 and 8 years of age and whether autistic and other related symptoms/traits were also affected by any changes to intellectual functioning. As it happens, they might be...

"A four class model best represented the data" meaning that participants typically fell into one of four 'patterns' with regards to their intellectual functions/trajectories. This included: "High Challenges (25.5%), Stable Low (17.6%), Changers (35.3%), and Lesser Challenges (21.6%) groups." As per the title of this post, I'm particularly interested in those described as 'Changers' or 'Lesser Challenges' who "demonstrated the most significant IQ change that was accompanied by adaptive communication improvement and declining externalizing symptoms" and "showed a significant reduction in ASD symptom severity" respectively. Indeed, within the Lesser Challenges group we are told that "by age 8, 14% of them no longer met ADOS-2 criteria for ASD." In other words, they did not reach cutoffs for the diagnostic criteria for an autism spectrum disorder (ASD) using a gold-standard assessment instrument and so could be considered not autistic by diagnostic standards.

Also important to the Solomon findings was the observation that: "Intervention history was not associated with group status." I'm not going to say too much more about this at the present time, but if replicated, the implications are pretty huge particularly where the current drive towards early intervention in autism is leading us (see here).

Although not always welcomed by everyone, the idea that a diagnosis of autism is permanent and immutable for all does not stand up well to scientific scrutiny. The best guess estimates currently suggest that somewhere between 9 and 12% of children/adults will 'lose their diagnosis' (see here and see here); also potentially affecting the presence of some important over-represented comorbidity too (see here). The old 'they weren't autistic in the first place' argument is a typical response from some nay-sayers on this topic; something which unfortunately contributes to the denigration of some important parts of the autism spectrum. Certainly a part of the autism spectrum that we can learn a lot from as the Solomon results are starting to show.

Indeed, given the other 'biological' focuses of the Autism Phenone Project [2] I'm hoping that we'll eventually see further results from this initiative providing important information on possible biological correlates linked to those who "no longer met ADOS-2 criteria for ASD". If ever there was a research study needed on autism, it is one including a little more biological and genetic information about those who move from autism to not-autism and what it could mean for the wider autism spectrum and particularly the concept of 'the plural autisms'...

To close, 'I want a deep fried turkey'....

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[1] Solomon M. et al. What will my child's future hold? phenotypes of intellectual development in 2-8-year-olds with autism spectrum disorder. Autism Res. 2017 Oct 27.

[2] Onore CE. et al. Levels of soluble platelet endothelial cell adhesion molecule-1 and P-selectin are decreased in children with autism spectrum disorder. Biol Psychiatry. 2012 Dec 15;72(12):1020-5.

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Tuesday, 16 May 2017

IMFAR, the autism numbers game and 12% showing 'optimal outcome'

A post recently published on the Spectrum website led to my blogging entry today, and the observation that: 'Alternative screen finds high autism prevalence in U.S. state'.

Discussing results delivered at IMFAR 2017 the research in question was that presented by Laura Carpenter and colleagues [1] (someone with quite a track record in autism research). This was a conference presentation and seemingly not yet peer-reviewed publication, so one needs to be a little cautious about making big claims just yet. That being said, there have been research hints that these results would be forthcoming [2] around this time.

The headline finding was that the prevalence of autism spectrum disorder (ASD) in one particular part of the United States for the birth year 2004 was probably quite a bit higher than that previously reported/estimated based on initial screening for possible ASD and then actual assessment. Details of the initiative used in this research - the South Carolina Children’s Educational Surveillance Study (SUCCESS) - can be found here.

Some 4100 children were "screened for ASD using the Social Communication Questionnaire." Those who were deemed 'at risk' for autism and a small proportion of those not hitting those *might be autism* thresholds were asked back for a more detailed interview. Although the number of children actually followed-up and interviewed who were eligible for further assessment was not particularly great, the authors were able to draw up an estimated prevalence of autism based on those who did complete the study. The figure: "ASD prevalence in this sample is 3.62%" roughly equivalent to 1 in 28 children. I say this in the context that in the United States and elsewhere, autism rates and/or numbers of cases are still high (see here and see here) and acknowledgement of the implications of such increases when it comes to services such as education, healthcare and the like.

The Spectrum article focuses quite a bit on the participation rate noted in the Carpenter study but another snippet of information is also included in the conference abstract that is worthy of discussion. A detail that reads: "Six children (6/52; 12%) had a clear developmental history of ASD but did not display clinically significant symptoms at the time of participation in this study." Further: "12% with a history of ASD no longer had significant ASD-related symptoms, providing further support for the potential for optimal outcomes in some individuals."

I'm rather interested in that 12% figure with 'optimal outcome'. Optimal outcome describes cases where a clear indication/diagnosis of autism has been seen/received, but for whatever reason(s) diagnostic thresholds are not longer met at a future assessment point. I've covered this group quite a few times on this blog, most notably in relation to a previous estimate of 9% of those diagnosed with autism potentially falling into this category (see here). Appreciating that such data challenges the assumption that *all* autism is a lifelong condition (indeed, stretching across the entire autism spectrum - see here), I'd reiterate that those described as being 'optimal outcomers' represent an important subgroup on the autism spectrum in these days of plural autisms (see here). Not least is the question: Why? Why do these children not maintain their diagnosis and what lessons (if any) can be learned for the wider autism spectrum, particularly also in the context that various quite disabling comorbidities might also be 'reduced' alongside core autism symptoms in this group.

We await formal peer-reviewed publication of the Carpenter findings and perhaps some further details.

To close, upon introducing my brood to the music of Kate Bush, I am yet again reminded just how good a singer/performer she really is...

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[1] Carpenter LA. et al. The Prevalence of Autism Spectrum Disorder in School Aged Children: Population Based Screening and Direct Assessment. IMFAR 2017.

[2] Carpenter LA. et al. Screening and direct assessment methodology to determine the prevalence of autism spectrum disorders. Ann Epidemiol. 2016 Jun;26(6):395-400.

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ResearchBlogging.org Carpenter LA, Boan AD, Wahlquist AE, Cohen A, Charles J, Jenner W, & Bradley CC (2016). Screening and direct assessment methodology to determine the prevalence of autism spectrum disorders. Annals of epidemiology, 26 (6), 395-400 PMID: 27230493

Monday, 28 November 2016

On moving off the autism spectrum

The paper by Nahit Motavalli Mukaddes and colleagues [1] provides some important, if small-scale, information when it comes to that still controversial term - optimal outcome - with the diagnosis of autism in mind. Optimal outcome basically refers to a particular 'type' of autism whereby following a definite diagnosis of autism or autism spectrum disorder (ASD), a later re-evaluation of signs and symptoms reveals that diagnostic thresholds are subsequently not reached and/or exceeded and hence, the criteria for autism are not fulfilled.

I say this is a controversial term because it is. Still after quite a bit of peer-reviewed published research saying 'yes, it exists' (and alongside quite a few manifestations of autism) coupled with quite a bit of research talking about different developmental trajectories accompanying different 'types' of autism (see here) the old 'they weren't really autistic' phrase still comes out time and time again. And with it, children/adults who were diagnosed with autism are doubted to have been actually autistic. The skills of the professionals who made the diagnosis are doubted. The parents and significant others who most likely initiated the screening and diagnosis of autism are doubted. All of this seemingly to uphold the 'lifelong' tag that accompanies quite a bit of discussion about autism. Not a great state of affairs eh?

Work by Mukaddes et al has previously made an appearance on this blog (see here) talking about possible predictors of optimal outcome. This time around they aimed to "assess the autism symptoms and other psychiatric disorders in a group of children with a past history of autism." Their group, comprised of 26 who "lost the diagnosis of autism two to eight years previously", were assessed for autism - DSM-5 autism no less - together with various other psychometric/behavioural schedules.

Results: "None of the participants met criteria for an autism diagnosis." What this means is that for their cohort, 'loss' of a diagnosis of autism was not some short-term thing. But be careful here, as I remind you that DSM-5 criteria "were used for [a] diagnosis of ASD" for autism and the emerging data suggesting that DSM-5 is already likely to move quite a few people off the autism spectrum compared with previous diagnostic schedules (see here). Indeed, I wonder how many of their cohort might be labelled with SCD instead?

When it came however to looking at other psychiatric/behavioural labels, being an optimal outcomer with autism in mind did not necessarily mean symptom-free: "81% had a present psychiatric disorder based on the K-SADS. ADHD [attention-deficit hyperactivity disorder], specific phobia and Obsessive Compulsive Disorder (OCD) were the most common disorders." This finding is interesting. Interesting because it does not necessarily tally with other work on this topic (see here) but at the same time, reiterates that a diagnosis of autism rarely exists in a diagnostic vacuum (see here) (and that includes past diagnoses of autism). That ADHD in particular, is a label of growing importance to quite a few cases of autism should also be mentioned (see here) as should be the 'effects' that such a label has been linked with (see here).

"It is crucial to maintain psychiatric follow up of children who move-off ASD." Wise words from Mukaddes and colleagues but given the state of things here in Blighty, with continued austerity and long, long wait lists for assessments (see here), I don't really have a great deal of confidence that removal from the autism spectrum is going to prompt much in the way of follow-up. Indeed, going back to the question of whether optimal outcomers might nevertheless hit SCD - 'autism lite' -  diagnostic thresholds, I'm not even sure that those fitting into the SCD description are going to receive anything like the services and support they will still no doubt require. I do hope that I am wrong but...

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[1] Mukaddes NH. et al. What Happens to Children Who Move off the Autism Spectrum? A Clinical Follow-Up Study. Pediatrics Int. 2016. Nov 12.

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ResearchBlogging.org Motavalli Mukaddes, N., Mutluer, T., Ayik, B., & Umut, A. (2016). What Happens to Children Who Move off the Autism Spectrum? A Clinical Follow-Up Study Pediatrics International DOI: 10.1111/ped.13202

Thursday, 1 September 2016

Autism, optimal outcome and the broader autism phenotype

"Overall, OO [optimal outcome] individuals are not showing BAP [broader autism phenotype] characteristics, but may be subject to other mild ADHD [attention-deficit hyperactivity disorder]-like characteristics."

So said the findings reported by Joyce Suh and colleagues [1] who continue a research voyage based on the examination of a group of children who were very much once on the autism spectrum but no longer meet the diagnostic criteria for the label: those with so-called optimal outcome.

Including the godmother of optimal outcome (OO) research, Deborah Fein, on the authorship list, the Suh paper adds a further level of evidence that 'loss of diagnosis' might actually mean loss of the broader autism characteristics that make up the BAP description too. Looking at a small group of children classified as OO (n=22) and comparing them with a similar number of "high functioning individuals with ASD (HFA)... and typically developing (TD) peers" researchers set about comparing and contrasting the groups when it came to the BAP and also the "Big Five personality traits."

As per the opening sentence, those included in the OO grouping seemed to be free of BAP traits; indeed described as "indistinguishable from TD." Again bearing in mind the relatively small participant numbers included for study, the authors did note a few slight differences when comparing the OO group and those 'typically developing peers' in terms of their use of language and also emotional stability. There may be other avenues for further research based on these topics taking into account how OO might also provide protection against some important psychiatric comorbidity traditionally over-represented when it comes to autism (see here).

But yet again, it appears that OO does seem to denote a group of children who were most definitely on the autism spectrum but who now, for whatever reason(s), seem to be relatively symptom free including those symptoms linked to the broader autism phenotype. The sweeping generalisation that all autism is a lifelong condition takes yet another powerful peer-reviewed research hit.

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[1] Suh J. et al. Ratings of Broader Autism Phenotype and Personality Traits in Optimal Outcomes from Autism Spectrum Disorder. J Autism Dev Disord. 2016 Aug 18.

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ResearchBlogging.org Suh J, Orinstein A, Barton M, Chen CM, Eigsti IM, Ramirez-Esparza N, & Fein D (2016). Ratings of Broader Autism Phenotype and Personality Traits in Optimal Outcomes from Autism Spectrum Disorder. Journal of autism and developmental disorders PMID: 27538964

Wednesday, 15 June 2016

The stability of an Asperger syndrome diagnosis continued

"The subsample that no longer fulfilled an autism spectrum disorder had full-time jobs or studies (10/11), independent living (100%), and reported having two or more friends (100%)."

So said the paper by Adam Helles and colleagues [1] continuing a research theme from this authorship group on what happens to autism, or rather Asperger syndrome, in the longer-term (see here). Indeed, if you have the time, the thesis from Helles covering this area of study is well worth a read (see here).

This time around the focus was on the often fuzzy concept called 'quality of life' (see here) in terms of "work, academic success, living situation, relationships, support system" for 50 males "with Asperger syndrome diagnosed in childhood and followed prospectively over two decades." Alongside those 'objective' measures of quality of life (QoL), Helles et al also sought some information about more 'subjective' reports of QoL with the use of the "Sense of Coherence and Short-Form Health Survey-36" schedules.

As per the opening sentence to this post, I've initially focused in on those participants where diagnosis was not stable (i.e. the sub-group who did not continue to fulfil criteria for Asperger syndrome) as providing yet more evidence [2] on how objective outcomes were seemingly improved compared to those who still reached diagnostic thresholds. Allied to other work by other independent research groups (see here), these findings continue to demonstrate just how heterogeneous the autism spectrum is and that dogma about autism being a 'lifelong condition' might not necessarily be applicable to everyone who at one time or another met diagnostic thresholds. I know such a line of thought is not always received well by all, but I am of the opinion that remitting autism is at least as likely and important as remitting schizophrenia or remitting depression for example. As to the mechanisms, well, I don't want to speculate too much at this time but 'autisms' (plural) is a word that springs to mind as a first thought when it comes to such experiences (see here).

When compared to this subgroup of those no longer meeting diagnostic criteria, those who remained within the diagnostic boundaries of Asperger syndrome did not appear to fare so well on those objective measures of QoL: "41% had full-time job or studies, 51% lived independently, and 33% reported two or more friends, and a significant minority had specialized employments, lived with support from the government, or had no friends." I say that bearing in mind the difference in participant numbers falling into one or other grouping.

In terms of those subjective measures of QoL, we are also told that: "Stability of autism spectrum disorder diagnosis was associated with objective but not subjective quality of life" and that "psychiatric comorbidity was associated with subjective but not objective quality of life." This is perhaps not unexpected as per the growing body of research suggesting that various psychiatric comorbidity might be over-represented when a diagnosis of autism is received (see here) and how some of it can be truly disabling (see here). It's not then beyond the realms of possibility that one could have (and hold down) a job for example (objective QoL), but feel that one's subjective QoL is still poor as a result of said comorbidity and its impact on areas of life like employment. Indeed, I'd perhaps forward a research case for how what we term 'comorbidity' might actual be more central to the presentation of various types of autism (see here) outside of being just another add-on diagnosis.

I don't want to come across as being too focused on outcomes around diagnostic instability when it comes to the autism spectrum because for the majority of people the diagnosis, whilst liable to fluctuation with regards to certain facets and skills, is very much a lifelong thing. That also definitions of long-term outcome and QoL say little about important concepts such as happiness and life satisfaction is another important point to make (see here). But the accumulating longitudinal work from Helles and others is providing something of an important window into autism in the long-term and how, wearing the cold, objective spectacles of science, the remittance of core symptoms might not be an unfavourable outcome for some...

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[1] Helles A. et al. Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity. Autism. 2016 May 26. pii: 1362361316650090.

[2] Gillberg IC. et al. Boys with Asperger Syndrome Grow Up: Psychiatric and Neurodevelopmental Disorders 20 Years After Initial Diagnosis. J Autism Dev Disord. 2016 Jan;46(1):74-82.

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ResearchBlogging.org Helles A, Gillberg IC, Gillberg C, & Billstedt E (2016). Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity. Autism : the international journal of research and practice PMID: 27233289

Wednesday, 16 March 2016

9% of those diagnosed with autism might have optimal outcome?

"Although for many children, Autism Spectrum Disorder (ASD) is a lifelong disability, a subset of children with ASD lose their diagnosis and show typical cognitive and adaptive abilities."

Unfortunately, that sentence taken from the report by Emily Moulton and colleagues [1] including one Deborah Fein on the authorship list, is not likely to be taken well by some people. Indeed, the whole concept of 'optimal outcome' with autism in mind (see here) has sometimes been met with outright hostility despite this being peer-reviewed science that, on occasion, has been independently verified (see here and see here). I can't say for sure why optimal outcome (OO) has not been received in the manner it should have been but I'd guess that dogma might have something to do with it (yet again). That some commentators have also made throw away comments to the effect that 'they were never autistic in the first place' I think, does a real disservice to an important group of people who were, very definitely, at some time on the autism spectrum. Heterogeneity people, heterogeneity.

No mind. The findings reported by Moulton et al add to a considerable bank of data suggesting that those with OO might be an important research focus for autism. This time around some 200 children "with an ASD at age two who were reevaluated at age four" are discussed and how most (~80%) retained their ASD label between the two testing occasions. But, and it is an important point: "9 % showed "optimal progress": clear ASD at age two but not at age four, and average cognition, language, communication and social skills at age four." The Masters thesis of Moulton can be read here containing more details.

Although requiring much more study, the idea that nearly one in ten children on the autism spectrum might 'lose' their diagnosis sounds quite important to me. Further: "Early child-level factors predicted optimal progress: diagnosis of PDD-NOS [Pervasive Developmental Disorder - Not Otherwise Specified], fewer repetitive behaviors, less severe symptomatology and stronger adaptive skills." A roadmap for where early screening and importantly, intervention might want to focus perhaps? Bear in mind that there may be other factors too [2].

There remains still quite a bit to do in this area before textbooks are re-written and the like. Personally, I'd also like to see a little bit more information about medical history included in future write-up and whether variables such as onset of symptoms might play some role in OO. Y'know, when something like infection has/had been 'correlated' with symptoms onset (see here for example) or autism in the presence of ear infections (see here) to name a few potentially important variables. I'm also yet to see whether genomic analysis has been suitably applied to the OO group too, taking into consideration the importance of gene expression as well as the focus on structural genetics. I'd also be interested to see what happens as and when DSM-5 criteria are more consistently used with this group, particularly in terms of the social communication disorder (SCD) label (see here) and how many might 'move' rather than 'lose' a diagnosis.

I do also have to caution that OO does not mean that early developmental issues manifesting as autism or autistic traits might not still exert an influence on a person. The paper by Inge-Marie Eigsti and colleagues [3] confirms as much, bearing in mind that brain imaging is still in its infancy with autism in mind and the wide heterogeneity (and comorbidity) present in the spectrum that complicates matters.

Lots more to see and do methinks, including further analysis on just how important the figure '9%' might be to optimal outcome and autism [4] (or at least when it comes to the question of diagnostic stability). All that, set within the context of paying a little more respect to the experiences of an important group who were at one time, part and parcel of the very wide autism spectrum.

And while I have you, I'd like to draw your attention to a new report from the folks over at Treating Autism in conjunction with Queen Mary University of London suggesting that 'could do better' is the mark awarded for access to good quality health support for those on the autism spectrum here in Blighty.

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[1] Moulton E. et al. Early Characteristics of Children with ASD Who Demonstrate Optimal Progress Between Age Two and Four. J Autism Dev Disord. 2016 Feb 19.

[2] Artigas-Pallares J. & Paula-Perez I. Autisms that 'cure themselves'. Rev Neurol. 2016 Feb 21;62(s01):S41-S47.

[3] Eigsti IM. et al. Language comprehension and brain function in individuals with an optimal outcome from autism. Neuroimage Clin. 2015 Dec 2;10:182-91.

[4] Wu YT. et al. Retention of autism spectrum disorder diagnosis: The role of co-occurring conditions in males and females. Research in Autism Spectrum Disorders. 2016; 25: 76-86.

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ResearchBlogging.org Moulton E, Barton M, Robins DL, Abrams DN, & Fein D (2016). Early Characteristics of Children with ASD Who Demonstrate Optimal Progress Between Age Two and Four. Journal of autism and developmental disorders PMID: 26895327