Following ADHD long-term: "a persistence rate of 27.8%"

Studies such as the one published by Michel Lecendreux and colleagues [1] always catch my attention. Research that follows a group of people over a period of years makes for interesting reading; not least because one gets a flavour for what *could* happen when such findings are applied to a larger population.

The Lecendreux findings focused on a few important issues pertinent to a diagnosis of attention-deficit hyperactivity disorder (ADHD) specifically related to (a) the persistence of ADHD, and (b) the idea that signs and symptoms of ADHD not meeting the thresholds for a diagnosis of ADHD might be rather important. Indeed, that they may merit "a subthreshold diagnostic category" of their own.

So, based on a starting participant sample of just over a thousand families including a child in the "6-12 years age range", interviews were conducted covering various aspects of ADHD and beyond: "symptoms of ADHD, conduct disorder, and oppositional defiant disorder as well as family living situation, school performance, sleep disturbance, eating habits, use of supplemental iron, and history of ADHD treatment." Approaching half of the original sample (492 / 1012) were followed up some 9 years later where "the persistence of ADHD and its impairments and the emergence of new conditions were assessed."

Results: "At follow-up, 16.7% of the children diagnosed with ADHD at baseline met full criteria for ADHD and 11.1% met criteria for subthreshold ADHD, yielding a persistence rate of 27.8%." Diagnosis of ADHD was, by the way, based on DSM-5 criteria (see here). That figure of 27.8% in terms of ADHD persistence from childhood to early adulthood is potentially an important one. It tells us that for a majority of children diagnosed with ADHD in childhood, their symptoms of inattention, hyperactivity and impulsivity will reduce to such a degree that they are no longer considered clinically significant or at least not reaching thresholds for a diagnosis of ADHD. Whether such a reduction in symptoms is through processes such as maturation or the timely implementation of intervention/management strategies needs quite a bit more work. Whether also ADHD potentially 'morphs' into something else as people age also needs further exploration (see here).

Another important detail was also mentioned by Lecendreux et al: "Among children not diagnosed with ADHD at baseline, 1.1% met criteria for ADHD at follow-up." Such a figure is important in relation to the concept of adult-onset ADHD [2] and the question of whether ADHD is a diagnosis with foundations always rooted in infancy. The Lecendreux findings suggest that for some people, this might not be the case and opens the door to possible talk about acquired ADHD for examples. This also sounds very familiar (see here).

Insofar as the issue of a possible 'subthreshold diagnostic category' for ADHD, I find myself agreeing with the "dimensional conceptualization" mentioned by the authors. Several other conditions / states / diagnoses have recognised 'lite versions' of the label. In autism for example, one might see this as social communication disorder (SCD) or mention of the broader autism phenotype (BAP). I'm even minded to place the label known as pathological demand avoidance (PDA) in a similar bracket given recent opinions (see here). Such chatter about 'lite' does not and should not downplay the effects of such sub-threshold labels. It merely acknowledges that there may be a wider spectrum of issues / difficulties experienced outside of the receipt of a core diagnosis.

So it should perhaps be the same with ADHD too, given what is beginning to emerge on the long-term 'effects' that a diagnosis of ADHD and subthreshold ADHD might bring (see here and see here).

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[1] Lecendreux M. et al. A 9-Year Follow-Up of Attention-Deficit/Hyperactivity Disorder in a Population Sample. J Clin Psychiatry. 2019 May 7;80(3). pii: 18m12642.

[2] Cooper M. et al. Investigating late-onset ADHD: a population cohort investigation. J Child Psychol Psychiatry. 2018 Oct;59(10):1105-1113.

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Early Autism and Developmental Disabilities Monitoring says autism prevalence is still rising...

"The overall ASD [autism spectrum disorder] prevalence was 13.4 per 1,000 children aged 4 years in 2010, 15.3 in 2012, and 17.0 in 2014 for Early ADDM [Autism and Developmental Disabilities Monitoring] sites with data for the specific years."

So said the surveillance summary published by Deborah Christensen and colleagues [1]. Those of you who follow the US ADDM initiative (see here) will already know about the aims of this "group of programs funded by the CDC" looking at the (estimated) autism numbers, changes to the numbers and the impact of the numbers on various communities. Through initiatives like the ADDM, we already know that the estimated prevalence of autism in 8-year olds living in the United States is round about 1 in 59 (see here) and that the estimate continues to grow for pretty much every surveillance year examined. We are also starting to find out about how the change to DSM-5 from DSM-IV is likely to/not to impact on future figures (see here). And hopefully, at some point, we might have some further data on what happens to autism past childhood (see here) from such an initiative.

The Christensen paper adds another tier to the knowledge being acquired as per their analysis of the (estimated) prevalence rate of autism in 4 year olds "whose parents or guardians lived within designated sites." Those sites were: Arizona, Colorado, Missouri, New Jersey, North Carolina, Utah, and Wisconsin. The Early ADDM initiative does not cover the same area as its big brother/sister ADDM but "is conducted in two phases using the same methods and project staff members as the ADDM Network." Those phases include first "reviewing and abstracting data from children’s records, including comprehensive evaluations performed by community professionals" and then a second phase involving "a review of the abstracted evaluations by trained clinicians using a standardized case definition and method." DSM-IV criteria covers most of the time points examined but: "For 2014 only, prevalence estimates based on surveillance case definitions according to DSM-IV-TR and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) were compared."

Results: as per the opening sentence of this post, the overall (estimated) autism prevalence across all sites for autism in 4 year olds was on the increase between 2010 and 2014. That's not to say that there weren't differences between the various sites - New Jersey, a favourite autism prevalence site (see here) showed the highest prevalence: 19.7, 22.1, and 28.4 per 1,000 for 2010, 2012 and 2014 respectively - but overall the prevalence rate was increasing not decreasing.

There were a number of other important points raised in the Christensen findings. So: "Among four sites with ≥60% data on cognitive test scores (Arizona, New Jersey, North Carolina, and Utah), the frequency of co-occurring intellectual disabilities was significantly higher among children aged 4 years than among those aged 8 years for each site in each surveillance year except Arizona in 2010." I don't think I need to say much more about that. Also: "The overall prevalence estimate using a DSM-IV-TR case definition was approximately 20% higher than the prevalence estimate based on DSM-5 criteria." Again, I don't think too much more discussion is needed on this point aside from saying that for 4-year olds, the switch to DSM-5 might have made more of a difference than for 8-year olds. Indeed in comparison to the Wiggins data [2] based on 8-year olds where "46.0% children met both DSM-IV-TR and DSM-5 surveillance status, 44.0% met neither the DSM-IV-TR nor DSM-5 surveillance status, 4.0% met DSM-IV-TR status, but not DSM-5 status, and 6.0% met DSM-5 status, but not DSM-IV-TR status of ASD" the Christensen data showed something a little different: "Among 1,237 children who met the surveillance case definition for either DSM-IV-TR or DSM-5, 974 (78.7%) met both case definitions, 234 (18.9%) met the DSM-IV-TR but not the DSM-5 case definition, and 29 (2.3%) met the DSM-5 but not the DSM-IV-TR case definition." Perhaps more study is required on the diagnostic changes?

What's more to say? Well, one of the authors - Walter Zahorodny - kinda said it all in a media comment: "There’s no letup. I really don’t understand why the rate is going up in this way." So maybe the next question, a question that really should have been examined a long, long time ago, needs to be 'Why?' rather than just a continual chain of studies saying autism prevalence is increasing...

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[1] Christensen DL. et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 4 Years - Early Autism and Developmental Disabilities Monitoring Network, Seven Sites, United States, 2010, 2012, and 2014. MMWR Surveill Summ. 2019 Apr 12;68(2):1-19.

[2] Wiggins L. et al. Comparison of autism spectrum disorder surveillance status based on two different diagnostic schemes: Findings from the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 2012. PLoS ONE. 2018; 13(11): e0208079.

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DSM-IV vs DSM-5 criteria for autism continued

It's another 'DSM-5 autism' post (see here) from me today as the findings reported by W. Jason Peters & Johnny Matson [1] caught my attention on a topic that has been and remains pretty important: what happened to the rates of diagnosed autism when clinicians switched from the DSM-IV to DSM-5?

DSM-IV and DSM-5 represent versions of the Diagnostic and Statistical Manual of Mental Disorders, one of two manuals containing standardised criteria for diagnosing various behavioural and psychiatric labels. Autism is included in the DSM (and has been for a while). As with various other labels, the refinements to the diagnosis of autism that came with the introduction of the DSM-5 have the been the source of some speculation as to the potential impact on the rates of diagnosed autism.

The data produced so far have been a little bit mixed as to whether more, less or the same number of people would reach diagnostic cut-off points under DSM-5 compared with the application of the DSM-IV criteria (see here and see here) but perhaps with a slight inclination towards DSM-5 being more restrictive (also including a separate catch-all category called social (pragmatic) communication disorder (SCD) (see here)).

And so it was with the Peters/Matson findings, as we are told that: "Fewer individuals met criteria according to DSM-5" based on their cohort of infants and toddlers. The caveat? Well: "individuals with higher levels of symptoms were more likely to meet criteria for both versions [DSM-IV-TR and DSM-5] as compared to either alone" which kinda stands to reason. Indeed other papers recently published [2] pretty much said the same. The conclusion: "results suggest that there are meaningful differences in how DSM criteria may apply to individuals with an ASD [autism spectrum disorder]."

And, since I'm on the topic of what the DSM-5 did or did not do to autism diagnoses, a timely systematic review and meta-analysis from Kulage and colleagues [3] also adds something to the conversation: "Findings suggest smaller decreases in ASD diagnoses compared to earlier reviews."

End of line.

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[1] Peters WJ. & Matson JL. Comparing Rates of Diagnosis Using DSM-IV-TR Versus DSM-5 Criteria for Autism Spectrum Disorder. J Autism Dev Disord. 2019. Feb 27.

[2] Wiggins LD. et al. DSM-5 criteria for autism spectrum disorder maximizes diagnostic sensitivity and specificity in preschool children. Soc Psychiatry Psychiatr Epidemiol. 2019 Mar 8.

[3] Kulage KM. et al. How has DSM-5 Affected Autism Diagnosis? A 5-Year Follow-Up Systematic Literature Review and Meta-analysis. J Autism Dev Disord. 2019 Mar 9.

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DSM-5 autism is "largely comparable to" to DSM-IV-TR autism

"Merry New Year". Welcome back to Questioning Answers in 2019. So let's continue.

The quote heading this post comes from the findings reported by Lisa Wiggins and colleagues [1] and their research aiming to "replicate agreement between surveillance status based on DSM-IV-TR criteria and DSM-5 criteria for ASD [autism spectrum disorder]." This authorship group have some interest in the description of autism across the DSMs (Diagnostic and Statistical Manual of Mental Disorders) as a function of their involvement with the United States CDC and their other, quite recent publication, talking about the national US autism prevalence estimates in 8-year olds for 2014 (see here).

As well as arriving at the conclusion that 1 in 59 children aged 8-year old in the United States *might* have autism [2] (still potentially an underestimate according to other recent figures), their latest prevalence paper also, for the first time, introduced the DSM-5 to the Autism and Developmental Disabilities Monitoring (ADDM) Network. Previously, the DSM-IV was top (diagnostic) dog, but with the publication of the DSM-5 (see here) there was a new sheriff in town. And as the DSM-5 started to be utilised more and more widely in diagnostic circles, so the CDC autism estimating teams had to start taking this into account in their musings...

Wiggins et al relied on data for "8-year-old children who had health and education records reviewed for ASD surveillance in metropolitan Atlanta, GA in the 2012 surveillance year as a part of the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)." As per the aims and objectives of the MADDSP - "estimates the number of children with selected developmental disabilities in metropolitan Atlanta" - autism is one of the diagnoses included in the surveillance program. DSM-IV-TR criteria for autism were applied to the health and education records of a cohort of children to see if diagnostic thresholds were met. Importantly too we are told that: "a previous ASD diagnosis was not sufficient evidence to confirm DSM-IV-TR surveillance case status." Alongside: "A DSM-5 coding scheme for ASD surveillance was developed by an independent body of ADDM-affiliated experts and then adapted and refined by a CDC-led clinical workgroup." Application of this DSM-5 coding scheme was similarly used on those education and health records data and results were collected and compared.

"Similar to ADDM data reported for the 2014 surveillance period, we found substantial agreement between DSM-IV-TR and DSM-5 surveillance status of ASD in a sample of records reviewed for the 2012 surveillance period." The figures in a little more detail: "46.0% children met both DSM-IV-TR and DSM-5 surveillance status, 44.0% met neither the DSM-IV-TR nor DSM-5 surveillance status, 4.0% met DSM-IV-TR status, but not DSM-5 status, and 6.0% met DSM-5 status, but not DSM-IV-TR status of ASD." The importance of this data is what the quote heading this post talked about: DSM-5 autism is "largely comparable to" to DSM-IV-TR autism. So when the ADDM eventually makes the transition over to DSM-5 derived autism data only, it means that all those years of DSM-IV diagnosed autism are still very much relevant (and can be used as a comparator) in a historical context.

But... the authors do mention about how some other studies have observed that: "fewer children meet DSM-5 criteria for ASD than DSM-IV-TR criteria for ASD in similar service settings" (see here and see here). This requires quite a bit more investigation; in particular how "record-review surveillance [such as that utilised by Wiggins et al] relies on information contained in surveillance records and does not include an in-person evaluation of the child." As I've indicated in my very critical musings on armchair diagnosis of historical persons (see here for an extreme example), there is absolutely no substitute for talking to and directly observing a person who has been referred for a diagnostic assessment. None. I've also previously suggested that another related label that crops up near to the DSM-5 description of autism - social (pragmatic) communication disorder (SCD) - might also need some research attention too. Indeed, I wonder if the ADDM might eventually start reporting on autism and SCD separately...

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[1] Wiggins L. et al. Comparison of autism spectrum disorder surveillance status based on two different diagnostic schemes: Findings from the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 2012. PLoS ONE. 2018; 13(11): e0208079.

[2] Baio J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Morbidity and Mortality Weekly Report (MMWR). 2018; 67(6): 1-23.

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ADHD in a 'detention setting': meta-analysed

"Our results confirmed the high prevalence rate of ADHD [attention deficit hyperactivity disorder] among PLD [people living in detention], corresponding to a five-fold increase compared to the general population."

So said the meta-analysis findings reported by Stéphanie Baggio and colleagues [1] pulling together the current peer-reviewed research literature - "between January 1, 1966 and January 2, 2018" - on the estimated rate of ADHD in the prison/incarcerated population. The intention to undertake this meta-analysis had already been previously published (see here).

This is a topic that has been covered before on this blog (see here and see here for examples). It strikes to the heart of the idea that a diagnosis of ADHD (or the presence of significant ADHD-linked behaviours) confers an elevated risk for various adverse outcomes (see here and see here for another couple of such outcomes). It also implies that we need to know more about the 'hows-and-whys' of such elevated risks and what can be done to reduce or minimise them as and when ADHD is diagnosed...

Baggio et al describe how they boiled down the available research literature to just over 100 studies including data on nearly 70,000 participants. The studies covered various geographical locations and looked across various ages. We are told that: "The ADHD adolescent/adult meta-analytic prevalence estimate was 26.2%." So about 1 in 4 of the total incarcerated population included for study met the diagnostic criteria for ADHD. When looking at the 'retrospective assessment of ADHD in childhood' this figure climbed to over 40%. When researchers looked for any differences across the diagnostic criteria used (including DSM-5), they found no significant differences. They conclude that the rate of ADHD in PLD is quite a bit higher than that reported in the population at large.

"These results suggest that PLD bear a heavy mental health burden on secure services as around one-third may require treatment for ADHD." This is important. It reiterates that alongside the personal effects that ADHD has, there are also societal implications too. I know this is not exactly great PR when it comes to ADHD, but lives are needlessly being wasted when spent in captivity; lives that could be so much more productive in other circumstances.

Other important questions are asked by Baggio and colleagues too; questions around whether suitable "treatment, monitoring, and care for ADHD during and after detention" could aid in cutting re-offending rates and offering those who were detained a better life. I'd have to say that 'yes' is the most likely answer to this question; bearing in mind that offending behaviour is multi-faceted in terms of individual and other more socially and environmentally driven factors. But we have to, as a society, at least try...

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[1] Baggio S. et al. Prevalence of Attention Deficit Hyperactivity Disorder in Detention Settings: A Systematic Review and Meta-Analysis. Front Psychiatry. 2018 Aug 2;9:331.

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Statistically significant group differences in self-reported repetitive movements between diagnosed and self-identifying autism

One needs to remember that, at the time of writing this post, the article posted by Joost Wiskerke and colleagues [1] suggesting that "camouflaging of RMs [repetitive movements] may contribute to under diagnosis of autism, at least in females and transgender people" is just a preprint ("a version of a scholarly or scientific paper that precedes publication in a peer-reviewed scholarly or scientific journal"). It has not been through formal peer-review yet, but rather the authors have bravely 'put it out there' for old farts like me to pore over.

Having glanced through the abstract first and discovered the use of the words "self-identified as autistic" my brow furrowed somewhat. Upon further reading of the paper in its entirety, the furrowing brow furrowed a little less as I understood why the authors mentioned use of a cohort that was "56% formally diagnosed participants and 44% who self-identified as autistic." But that's not to say that I was completely enamoured with the study write-up as it currently stands...

Before continuing and in order to repel any accusations that come my way, I'll mention that I don't have any particular issue with people without a formal diagnosis of autism thinking/believing they are on the autism spectrum. It's their right to do so and indeed, such self-realisation is often an important step towards getting a professional assessment for autism. For some people, their hunch about being autistic eventually turns out to be correct as per them reaching defined clinical cut-off points for autism on the various instruments of assessment that are available during said professional assessment. But that's not to say that every person who self-identifies as being autistic/having autism is always going to be right. As we are starting to realise from the wealth of peer-reviewed science on this topic, the label autism does not seemingly have any exclusive rights to the presentation of autistic traits (see here and see here for examples). And it is for that reason why we have so many good and knowledgeable diagnosticians when it comes to such professional assessments, combined with an important focus on: "Symptoms caus[ing] clinically significant impairment in social, occupational, or other important areas of current functioning" in order to receive a diagnosis. Access to such autism assessments is another issue, but shouldn't be used as an excuse...

Onward:

Wiskerke et al started from the premise that repetitive movements (RMs) are common in autism but there are some potentially important differences in the expression of such issues between the genders. This follows other independent findings in this area (see here) detailing how stereotyped and repetitive behaviours may be less frequently observed in females [2] minus any sweeping generalisations. Researchers then moved on to suggesting that one of the reasons why such RMs may be less frequently observed is because they are actively being masked or camouflaged, and this could eventually lead to an under-diagnosis of autism among certain groups. 'Masking' or camouflaging in the context of autism is a bit of a hot [social media] topic at the moment (see here and see here).

"In this exploratory study, we took a first step... by using self-report measures from a large number of female and transgender adults, using recruitment on social media to an on line questionnaire." Ah yes, the on line questionnaire, which seems to becoming more and more popular in certain autism research circles [3] (see here also for another example). There's nothing wrong with using such tools for asking about opinions and the like, but they are typically open to anyone and everyone (who has access to the internet!), and not exactly great for authenticating complicated things like clinical diagnoses, behaviours and comorbidity for example. As for the incorporation of data from transgender adults, well, again this follows a theme in autism research recently (see here) where 'autistic identity' and sexual identity seem to be converging for some people/groups (see here).

"We assessed current RMs using a combination of visual analog scales for specific behaviors and textboxes for free-text responses." There's mention of using some of the DSM-5 criteria for autism in this section. Authors also talk about testing for camouflaging "using the matrix multiple-choice question “Did/do you hide these behaviors from others…” 1) “…as a child?”, 2) “…as an adolescent?”, 3) “…as an adult?”" Yet again (see here) a research priority needs to be the formulation of a valid and reliable questionnaire pertinent to 'measuring' masking/camouflaging with autism in mind. And finally there was the use of an old favourite  - the autism spectrum quotient (AQ) - by the authors, but with some added caveats...

Results:  "We found high rates of RMs in both diagnosed and self-identifying participants, and a striking prevalence of camouflaging" was one of the headlines. But... there were also some other important details observed too. So: "Higher scores in the diagnosed group were found for object fidgeting, repetitive hand movements, rocking, object spinning and hand flapping." I think most people would agree that such behaviours represent some of the more 'classical' manifestations included in the RM categorisation of autism. By contrast, other RMs such as scratching/rubbing skin, walking in circles and 'banging head' were not different between the diagnosed and self-identifying groups.

Based also on the strength of the camouflaging data presented by Wiskerke et al I have to say that I'm not yet altogether convinced by the evidence presented. It's not that I don't believe that 'self-inhibition' plays a role in such masking, nor that: "There were many references (47 participants) to having been bullied or disciplined for childhood RMs." It's just that methodologically speaking, offering up one question on such a complicated issue does not make for a scientifically compelling argument. As I previously said, autism science needs to invest in some high quality research on how to assess masking in the context of autism; perhaps including some important measure of self-monitoring for example. And one also needs to control for things like intellectual ability too and perhaps be open to other reasons why the presentation of autism between the genders/sexes might be subtly different.

I was also a little dismayed that the discussion of results by the authors did not seem to fully 'tally' with their findings. So: "The striking similarities between diagnosed and undiagnosed participants are consistent with a clinically relevant prevalence of autism in the undiagnosed group." As I've mentioned, the picture of 'striking similarities' was far from consistent when comparing RMs across the groups and those statistically significant differences reported on between diagnosed and self-identifying autism. Added to the fact that authors zoomed in on RMs without too much clinical focus on the other elements to autism, and the 'clinically relevant' picture is also far from complete based on this study alone. Indeed, other text in the discussion provide further clues as to the probable inclination of the authors: "We believe that this study in part reached the “lost generation” of autistic adults... many of whom appear to have turned to social media for support and kinship, sometimes after many disappointing encounters with clinicians and scientists." Emotive language such as 'Lost generation' really shouldn't be in a science paper without [strong] corresponding evidence.

What else? Well the authors did acknowledge some shortcomings in their study: "the on line format limited our ability to ascertain that robust diagnostic procedures had been used in all cases" and: "The self-report format also makes it possible that some participants erroneously reported an official diagnosis" (erroneously?) but perhaps more is needed to be said about participants ("the vast majority were indeed very cognitively able") and onward the applicability of results to other parts of the autism spectrum. It would also have been useful to include a few other (self-report) measures of other conditions/labels where autistic characteristics overlap, just to see...

I do think Wiskerke et al have tapped into a increasingly important research 'need' for some of those on the autism spectrum - masking - and how such behaviour does seem to impact on quality of life for quite a few people. We need a lot more research on this topic, and yes, there also needs to be some further analysis of what social accommodations could be made too, bearing in mind such understanding needs to come from lots of different quarters of society (see here). I'd also like to acknowledge the fact that one of the authors on the Wiskerke took the time to converse (on Twitter) with me about their paper, which was rather encouraging.

But still, I can't shake the idea that the methodological shortcomings of this study and the sweeping interpretations imply caution before any generalisations are made as a result. The fact also remains that self-identifying as being autistic/having autism is not the same as receiving a formal diagnosis of autism, however much people might want this to be true or find 'kinship' with the autism spectrum...

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[1] Wiskerke J. et al. Camouflaging of repetitive movements in autistic female and transgender adults. bioRxiv. 2018. Sept 10.

[2] Mandy W. et al. Sex differences in autism spectrum disorder: evidence from a large sample of children and adolescents. J Autism Dev Disord. 2012 Jul;42(7):1304-13.

[3] Kupferstein H. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism. 2018; 4: 19-29.

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Specific learning disorder in mathematics: prevalence, overlap and autism

I'm not going to spend too long discussing the findings reported by Kinga Morsanyi and colleagues [1] on the topic of specific learning disorder in mathematics (SLDM) but they are potentially important. Important because, alongside some [DSM-5] diagnostic definition changes to the issue of learning disorder with maths in mind (see here), something stood out from the Morsanyi results: "About half of the children with an SLDM profile had some form of language or communication difficulty. Some of these children also had a diagnosis of autism, social, emotional, and behavioural difficulties or attention deficit and hyperactivity disorder."

Surveying some 2400 primary school children here in Blighty, researchers analysed results based on various "standardized tests of mathematics, English, and IQ." They also looked at "several demographic factors over the primary school years" and subsequently applied the DSM-5 diagnostic criteria for specific learning disorder (SLD) to their cohort.

The found that about 6% of children met the diagnostic thresholds for SLDM. Sex/gender didn't seem to make any difference to the findings, but as with many things these days (see here), SLDM was typically not a 'stand-alone' diagnosis.

The 'language or communication difficulty' bit to the Morsanyi findings is perhaps not unexpected; I'll mention that again in a bit. The 'lumping' together of various SLDs covering reading, writing and maths skills in the DSM-5 is perhaps justified to this extent. Of more interest to this blog is the idea that developmental disorders, particularly autism, are also not uncommon alongside SLDs.

Without wishing to conflate a diagnosis of SLD with anything else, I'd like to take readers back to a post I wrote some time ago on how maths ability - particularly maths problem solving ability - in the context of autism is as varied as the label itself (see here). The sweeping generalisation that many/all those on the autism spectrum somehow have some savant ability when it comes to maths is brought crashing down by cold, objective science [2]. Science that observed that nearly a quarter of those on the autism spectrum "evidenced a mathematics learning disability" compared with around 4% who "exhibited mathematical giftedness." That's quite a disparity.

What can we learn from such data? Well, preferential screening is perhaps the first lesson to be learned. Ensuring that sweeping generalisations and stereotyping about autism in particular ("what's his/her special ability?") are replaced by appropriate objective testing to determine strengths and weaknesses in areas such as maths ability. Next, a greater appreciation that SLDs can overlap with one and another [3] might also be useful. So, issues with reading and writing might also be over-represented among those with an SLD in relation to maths ability as per what the Morsanyi data implied. Finally, intervention needs to be further examined: what can we do to aid a learner with autism presenting with SLDM? I'm no expert in this area, but understand that there are groups looking at this issue (see here). Obviously such interventions need to be mindful of the diagnosis of autism and other potential comorbidities and what that could mean for learners, but I'm assuming that there are going to be individualised strategies that work as well for those on the autism spectrum as they do for those not on the autism spectrum. This includes ensuring that maths anxiety is tackled too.

Oh, and just before I go, a friendly reminder: maths is probably not just a systemising-linked ability (see here and see here).

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[1] Morsanyi K. et al. The prevalence of specific learning disorder in mathematics and comorbidity with other developmental disorders in primary school-age children. Br J Psychol. 2018 Jul 5.

[2] Oswald TM. et al. Clinical and Cognitive Characteristics Associated with Mathematics Problem Solving in Adolescents with Autism Spectrum Disorder. Autism Res. 2016 Apr;9(4):480-90.

[3] Moll K. et al. Specific learning disorder: prevalence and gender differences. PLoS One. 2014 Jul 29;9(7):e103537.

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"Many people with autism could be homeless": conflating a diagnosis of autism with significant proxy-reported autistic traits

Here I go again. Taking issue with a media headline seemingly designed to grab attention and clicks: "Many people with autism could be homeless." And how said headline doesn't quite match up with the findings of a study upon which it is supposed to be based. It's not the first time this has happened (see here) and I very much doubt that it will be the last...

The study in question was the one published by Alasdair Churchard and colleagues [1] who attempted to fill "a gap in knowledge" concerning anecdotal evidence suggesting that "autistic people experience an elevated risk of homelessness." Researchers report results based on the "entire caseload ( N = 106) of a UK homeless outreach team" where data about autistic signs and symptoms were gathered from second-hand accounts (outreach workers). Authors reported that around 1 in 10 homeless people who underwent such proxy reporting *could* have fulfilled the diagnostic criteria for autism (one homeless person had a previously recorded diagnosis of autism apparently). Around a further 9% received a 'marginal' report insofar as autistic traits reported as being potentially present, but not necessarily to the extent of reaching clinical cut-off points. Researchers also summarised their results for the lay audience too (see here).

I'm pretty sure that you can see some of the 'incongruence' between the 'many people with autism could be homeless' headline and what the study actual did and reported on. I should also mention that although the DSM-5 was the diagnostic criteria relied on during the study, the authors highlight how this was administered via their own 'creation' - "a DSM-5 Autistic Traits in the Homeless Interview, which we call the DATHI." I don't want to poo-poo such an instrument and it's usefulness in the context of autism and homelessness, but I would like to see a lot more work on its reliability and validity in future studies before any big judgements (or even bigger headlines) are made. Even better would be talking to and directly screening homeless people for autism as a next research stage; to help for example, with important clinical decisions such as whether 'symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning' to them as per the DSM-5 guidance on receipt of an autism diagnosis. Obviously such direct questioning might not be easy. One also needs to consider whether the status of homelessness might itself contribute to such 'significant impairment in social and occupational' functioning? Also throw in the idea that autistic traits are not necessarily just indicative of autism (see here for one example) and you have a recipe for some significant misunderstanding around the risk of homelessness and a diagnosis of autism which could further stigmatise. Sweeping generalisations about autism have already done more than enough damage down the years, often built on fairly flimsy evidence.

I'm not saying that there is no possible connection between autism (or autistic traits) and the status of homelessness. On the contrary, when one looks as the some of the myriad of reasons why a person becomes homeless (see here), there's more than a pinch of overlap with issues faced by those with autism. I will particularly highlight vulnerability variables like unemployment, poverty, poor physical and mental health and a lack of social support as being some of the most obvious commonalities. There are probably others. And where autism is identified in the homeless, one would expect there to be some added incentive to ensure they are well and given the advice and help they want/need to take care of themselves. Bearing in mind that is, that we aren't really in any position to dictate anyone's living arrangements to them...

And there's one final point to consider: various studies for example, have already talked about 'homelessness and the mental health scandal' (see here) where, in some cases, 4 out of 5 homeless people have been identified as having a mental health issue. Symptoms and diagnoses such as schizophrenia/psychotic disorder, mood and anxiety disorders and intellectual disability have all been talked about in the context of homelessness [2] alongside issues like substance abuse. Some of these labels/diagnoses have even been identified as having a direct influence on rough sleeping behaviour by some people (see here). You could well say that many of those behavioural and psychiatric labels/diagnoses have also featured in autism (see here and see here and see here for examples) and that within the context of 'autism rarely appearing in a diagnostic vacuum', so autism might then show a link to homelessness. But I'd be very careful to just singling out autism in this context. Very, very, very careful indeed...

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[1] Churchard A. et al. The prevalence of autistic traits in a homeless population. Autism. 2018 Apr 1:1362361318768484.

[2] Nishio A. et al. Prevalence of Mental Illness, Cognitive Disability, and Their Overlap among the Homeless in Nagoya, Japan. PLoS One. 2015 Sep 17;10(9):e0138052.

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Autism prevalence in California: 1931 to 2014

Credit: Nevison et al, 2018

'Autism prevalence' is a topic of real discussion both inside and outside of autism research circles. It's not so much a debate about whether there has been an increase in the numbers of people being diagnosed with autism or autism spectrum disorder (ASD) - there has and continues to be (see here and see here) - but rather the extent of the increase and the possible reason(s) behind such an increase.

The paper published by Cynthia Nevison and colleagues [1] adds something further to the autism prevalence discussions. They focused on how much of an increase in cases of autism has been noted in one part of the United States (US) and how some notable birth years have been seemingly driving the increase.

OK, first things first, Nevison et al are no strangers to the [peer-reviewed] debates around the autism numbers (see here and see here). Their previous analyses have concluded that the increase in cases of autism in the US is NOT solely driven by changing diagnostic criteria or diagnostic switching/substitution, although these factors have probably played some role. Yes folks, there might have been a very real increase in the numbers of people being diagnosed with autism (see here).

On this most recent research occasion, Nevison and co-author Mark Blaxill are joined by a noteworthy figure in the field of autism prevalence tracking, Walter Zahorodny. Zahorodny is intricately involved in tracking autism prevalence in New Jersey (see here) and was also listed as an author on the most recent CDC stats regarding estimated autism prevalence that were quite quietly published a few months back [2]. In short, he's an expert in such matters.

Authors started with the California Department of Developmental Services (CDDS) data on autism which "provides services to eligible individuals living in California who meet the DSM diagnostic criteria for autism." In the age of the (very) wide autism spectrum, the CDDS has been pretty reserved in terms of who gets the services it offers. The term 'code 1 autism' has been used to refer to CDDS recipients eligibility, where autism or autistic disorder was typically the diagnosis listed and importantly: "individuals applying for CDDS services must demonstrate significant functional disability in 3 out of 7 life challenges, which include self-care, language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency." We are told that: "Milder subtypes such as Asperger’s syndrome and PDD-NOS [pervasive developmental disorder - not otherwise specified] have not been eligible for services unless they have another qualifying disability" (authors words not mine). With the onset of the DSM-5 description of autism, where individual diagnoses like PDD-NOS and Asperger syndrome have been 'rolled' into one definition (autism spectrum disorder), the CDDS has had to adapt and change. The years 2016 and 2017 have been particularly important for the DSM-5 change to the CDDS.

Added to their examination of the CDDS data, authors also looked at a couple of other initiatives with autism prevalence data: The Individuals with Disabilities Education Act (IDEA) and the Autism and Developmental Disabilities Monitoring (ADDM) Network. As I've already mentioned, Zahorodny has been quite 'active' in ADDM research circles for some time.

From all this [estimated] prevalence of autism data, authors set about to 'visualise' autism prevalence data extracted from the CDDS and other information sources and further examine whether "ASD is truly a constant prevalence condition" taking into account the various methods for collecting data on autism prevalence.

Credit: Nevison et al. 2018

Results: "The data are consistent across methods in showing a strong upward trend over time." The long-term trend of autism prevalence based on the CDDS data show "an apparent ~ 1000-fold increase in CDDS autism prevalence between birth year 1931, when prevalence was only ~ 0.001%, and birth year 2012, when prevalence had increased to 1.18% among 5 year-olds born in that year." Nevison et al talk about "age-resolved snapshot and constant-age tracking method[s]" as tools in their research, but the long-and-short of it is that the only way was up when it came to autism prevalence across the years. They further note: "The increase from ~ 0.001 to 1.18% in the 2012 birth cohort has occurred gradually, with a slow upward creep starting as far back as the 1940s, but with several change points along the way, around ~ 1980, ~ 1990, and ~ 2007, when the rate of growth accelerated."

I don't think there is too much more to say about the Nevison findings aside from reiterating that autism prevalence seems to have quite dramatically changed over the last 80 years or so. Insofar as those upticks in diagnoses around birth years 1980, 1990 and 2007, I'd be interested to know a little more about what factors might have been contributory to those particular years' growth or whether they are just statistical blips.

And before you say it, no, it's probably not just better awareness and the like...

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[1] Nevison C. et al. California Autism Prevalence Trends from 1931 to 2014 and Comparison to National ASD Data from IDEA and ADDM. J Autism Dev Disord. 2018. July 5.

[2] Baio J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Morbidity and Mortality Weekly Report (MMWR). 2018; 67(6): 1-23.

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The International Classification of Diseases version 11 (ICD-11) has arrived...

Although peer-reviewed science research is the typical fodder for this blog, I am inclined to post about other important papers and/or events as they emerge. Today is such an occasion, as I draw your attention to an important announcement from the World Health Organization (WHO) recently titled: "WHO releases new International Classification of Diseases (ICD 11)."

Yes, this announcement covers the release of the the much anticipated ICD-11 system "for identifying health trends and statistics worldwide" also including "around 55 000 unique codes for injuries, diseases and causes of death." The ICD-11 schedule as it currently stands can be accessed here.

I might add that the release of ICD-11 is not the same as the 'roll out' of ICD-11, which are we informed "will come into effect on 1 January 2022." This 'advance preview' is basically a way of introducing the new schedule to the world and helping to facilitate a smooth transition from the version currently in use to this new system.

The ICD-11 has not been without some controversy as for example, a new condition known as 'gaming disorder' has been picked up by some media outlets (see here). Others have opined about the inclusion of "Traditional Medicine conditions - Module I" (see here) (where "disorders and patterns which originated in ancient Chinese Medicine and are commonly used in China, Japan, Korea, and elsewhere around the world" have been added in).

Relevant also to this blog - being a blog predominantly about autism research - is the entry on autism, and how the term 'Asperger syndrome' doesn't seem to figure (same as in the DSM-5). Instead, there is the umbrella term 'Autism Spectrum Disorder', complete with various sub-categorisation of diagnosis on the basis of intellectual development 'level' and functional language 'level'. The waning of the term Asperger syndrome is seemingly coincidental to the recent revelations about Hans Asperger (see here) but perhaps reflects long-standing 'doubts' about it's inclusion in previous versions of the diagnostic manual used (see here). There are other changes noted in ICD-11 which are also pertinent to autism (see here) including those relevant to the idea that a diagnosis of autism rarely exists in some sort of diagnostic vacuum (see here).

It's still very early days for the ICD-11 and so we'll have to wait and see what else emerges as physicians and the like across the globe come to terms with the revised schedule. I don't doubt that the evolving diagnostic nature of autism will also create discussions (and arguments) aplenty...

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The yet newer CDC estimated autism prevalence rate: 1 in 59 8-years olds with autism in 2014

The report detailing the latest autism prevalence estimates from the US CDC has at last been published [1] coinciding with some other information on the findings. These figures were expected, given the two years that have flown past since the last report put the estimated figure at a stabilised 1 in 68 8-year olds being diagnosed with an autism spectrum disorder (ASD) in 2012 (see here) similar to the report before that which covered the year 2010 (see here).

The latest estimate by Jon Baio and colleagues covering the period 2014 is: 1 in 59 otherwise recorded as 16.8 per 1,000 (1.7%) 8-year-olds diagnosed with an autism spectrum disorder (ASD). Media reporting of the latest figures focuses on the headline finding of that increase in the estimated rate (see here) alongside the 'we don't know why' sentiments voiced by some important authority figures (see here).

So, what other details do the statistics hold and what do they mean?

Well, first and foremost the 'stabilising' of figures noted two years ago at 1 in 68 did not seemingly tell the whole story. I know quite a few people made the most of those non-changing estimates to say that 'autism awareness' and 'changes to diagnostic criteria' and 'diagnostic substitution' were the drivers of the increase and the stabilisation was solely reflective of those factors taking their course. Well, I guess not. Indeed, the restarting of the upward trend kinda suggests that there's probably a lot more going on. It also adds to increasing evidence of a possible 'real' increase in autism (see here). But stand by for the 'it can't be a real increase' sentiments to fly in thick and fast...

Second, as mentioned in the last report from the CDC, we are now presented with not one, but two diagnostic systems to characterise autism or ASD, as the DSM-5 enters service. DSM-5, if you'll remember, is the new classification system that is slowly starting to replace the older DSM-IV criteria. It's also the schedule that *seemed* to be a little more 'selective' in who did and did not qualify for a diagnosis of autism according to other external findings (see here). Did it exert an effect on the most recent autism prevalence estimates? Well, yes it did, as authors noted that: "ASD prevalence was approximately 4% higher based on the historical DSM-IV-TR case definition compared with the new DSM-5 case definition." Although the overall effect was probably not a great one, the more selective case definition provided by DSM-5 in the direction of potentially reducing numbers, contrasts with the upward trend reported. It should also be noted that authors mention how there was "approximately 86% overlap between the two case definitions." But... no mention of the other categorisation called Social Communication Disorder (SCD) (see here) was however included in the latest figures.

Other details are also mentioned in the new report that are worthwhile noting. Almost a third of the children with autism identified in the latest data, who had intellectual functioning data available, were reported to present with an intellectual or learning disability. This tallies with quite a lot of other independent data on the overlap of learning disability with autism. The 4:1 male:female ratio of autism also seemed to hold true in the latest figures. Also: "While a higher percentage of white children were identified with autism compared to black children, and even more so compared to Hispanic children, these disparities were smaller when compared with estimates from previous years." Autism practice it seems, is starting to reach some traditionally under-served populations, that probably contributed in part to the increased estimate noted. I stress the words 'in part' in that last sentence, just in case more sweeping generalisations are put out there to explain away any 'real' increase in the estimated numbers just to better detection of autism in non-white groups.

So, there you have it. An approximate 15% increase in autism estimates in 8-year olds compared with previous figures. As one news report put it: "a 150% increase since 2000." The authors of this most recent CDC report conclude by saying: "ASD is an urgent public health concern that could benefit from enhanced strategies to help identify ASD earlier; to determine possible risk factors; and to address the growing behavioral, educational, residential and occupational needs of this population." I really can't disagree with any of those sentiments.

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[1] Baio J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Morbidity and Mortality Weekly Report (MMWR). 2018; 67(6): 1-23.

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Hans Asperger "was actively involved in the Nazi regime's euthanasia programme in Austria"

Credit: The BBC News website 19 April 2018

Many people will already have seen the headlines (see here for example) covering the paper by Herwig Czech [1] that concluded that: "The narrative of [Hans] Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence."

It makes for particularly difficult reading insofar as dispelling other highly-cited accounts of Asperger as being some sort of 'hero' - "the narrative of Asperger as an Oskar Schindler-like protector of children with autism" - who claimed "to have shielded his patients from the Nazi regime." Instead, as also acknowledged in an accompanying editorial on the Czech findings [2], the evidence uncovered seems to point to something rather more approaching: "that Asperger was not just doing his best to survive in intolerable conditions but was also complicit with his Nazi superiors in targeting society’s most vulnerable people." The main assertions seem to be around Asperger "referring children both directly and indirectly to Am Spiegelgrund", a notorious clinic that summed up the utter disdain that the Nazi regime had for the beautiful heterogeneity of life.

I don't really want to say too much more on this topic because I'm sure that discussions will go on with regards to the Czech findings and their implications. I do want to raise two points that may be pertinent however.

First, the question of 'does it matter?' that Asperger had such a past is bound to be raised. Yes, it does matter. As a previous opinion piece published just before the Czech article (see here) mentions: "To medical ethics, it does. Naming a disorder after someone is meant to credit and commend, and Asperger merited neither." That author, who also has a book coming out on this topic, went as far as suggesting that: "We should stop saying “Asperger.” It’s one way to honor the children killed in his name as well as those still labeled with it."

Second, and related to the first point, is the 'flack' that has been taken by the most recent Diagnostic and Statistical Manual (DSM) (version 5) when it dropped the term 'Asperger syndrome'. Instead, the authors of this 'diagnostic bible' chose to go down the more generic 'autism' route; something that also looks likely in the context of the ICD-11 proposals too (see here). In view of the Czech findings and bearing in mind that issue of 'medical ethics' it looks like this was a correct decision. I appreciate that this may have knock-on effects for those diagnosed and identifying as having Asperger syndrome - ""No-one with a diagnosis of Asperger syndrome should feel in any way tainted by this very troubling history," Carol Povey, director at the Centre of Autism for the UK's National Autistic Society, said in a statement to the BBC" - but with these new revelations must come some sort of change in thinking.

The Czech findings matter because lives matter. They matter because they paint a picture of a man who lived and worked in very difficult times but a man "that the Nazi authorities saw... in an increasingly positive light, including as someone willing to go along with their ideas of race hygiene."

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[1] Czech H. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism. 2018; 9: 29.

[2] Baron-Cohen S. et al. Did Hans Asperger actively assist the Nazi euthanasia program? Molecular Autism. 2018; 9: 28.

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"given that 81.6% of the children diagnosed with ASD had IQs below 40"

The quote titling this post - "given that 81.6% of the children diagnosed with ASD [autism spectrum disorder] had IQs below 40" - was part and parcel of the findings published by Zhijuan Jin and colleagues [1] who set about estimating the prevalence of autism or ASD among children resident in Shanghai, China.

This is not the first time that research groups have set out to determine the estimated prevalence of autism at a city / region / countrywide level in China [2], but does, I think, mark the first time that said prevalence estimates have been based on the DSM-5 description of autism (well, almost the first time [3]).

Looking at a population of some 75,000 children resident in Shanghai and aged between 3-12 years old, details of a two-stage project are described this time around. Parents and teachers completed the Social Communication Questionnaire to identify those children who might be 'at-risk' for autism/ASD. Those who were picked up as being 'at risk', were then subject to some rather more comprehensive assessment based on the use of DSM-5, of which just over 200 children were "identified as ASD cases." The estimated prevalence figure arrived at was 8.3 per 10,000 although the authors suspect that this is an underestimate...

But then back to that opening quote, and a quite a notable percentage of children diagnosed with autism who also presented with a low IQ classification. Bearing in mind the fact that there are differences in IQ ranges across different instruments, an IQ rating of 40 or below (age-adjusted) typically indicates quite a significant cognitive impairment or delay and is one facet of the diagnosis of learning (intellectual) disability. The observation from Jin et al that over 80% of their cohort could potentially be defined as such provides some important data on the combination of autism and learning disability (LD).

On previous blogging occasions when the topic of autism and LD has been discussed, the question of how prevalent is LD in autism has been a difficult one. On some occasions, the data has suggested that around 35% of children with autism have LD on the basis of IQ scores (see here). On other occasions, a figure nearer 70% has been implied (see here). The Jin data suggest that in their cohort, 70% may actually be quite a conservative estimate.

I would like to see more study on this topic. I'd like to know whether, seemingly like other ethnic groups, learning disability + autism is the more typical presentation when it comes to autism in Chinese children and how this plays out as children age into adulthood. I'd like to know whether the distinction between autism and social (pragmatic) communication disorder (SCD) noted in the DSM-5 exerted any effect on the Jin data. I'd like to know quite a bit more on this rather interesting area of investigation...

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[1] Jin Z. et al. Prevalence of DSM-5 Autism Spectrum Disorder Among School-Based Children Aged 3-12 Years in Shanghai, China. J Autism Dev Disord. 2018 Feb 16.

[2] Sun X. et al. Prevalence of autism in mainland China, Hong Kong and Taiwan: a systematic review and meta-analysis. Mol Autism. 2013 Apr 9;4(1):7.

[3] Jiang L. et al. Epidemiological investigation on autism spectrum disorders among preschool children in Shanghai. Zhonghua Liu Xing Bing Xue Za Zhi. 2015 Dec;36(12):1365-8.

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Autism portrayed in the movies: pleasing some of the people some of the time...

Things have come a long way since the first real mainstream appearance of autism on the silver screen (Rain Man). Nowadays, not a week seems to go by when autism doesn't feature in one form or another on a television show or new film/movie; even appearing in Sesame Street. I see this as a good thing when it comes to bringing autism further into the public psyche and hopefully preventing headlines such as 'Mother sent 'hurtful' letter about 'screechy' son with autism' from making many more appearances.

The downside however, is that with every representation of autism, there are typically comments galore about how autism is not being accurately portrayed or represented. A case in point is a new series called Atypical which has, according to one commentator, invited the same-old-same-old from some quarters (see here). Indeed, the old tenet: 'you can please some of the people some of the time, but not all of the people all of the time' seems to be tailor-made when it comes to views and opinions on the representation of autism on the screen.

It's timely that a new paper looking at the representation of autism in film and TV has also been published by Anders Nordahl-Hansen and colleagues [1]. Starting on the basis that: "Inaccurate portrayals [of autism] are a concern as they may lead to increased stereotypes toward the condition" authors concluded that many characters portraying autism seemed to "align unrealistically well with DSM-5 diagnostic criteria." They mention that those 'savant skills' (a.k.a 'a superpower') that every person with autism is supposed to have(!) were VERY well represented in the media content they surveyed. The authors go on to talk about the educational value of such portrayals and "the notion of authenticity in representing the autistic experience."

As I mentioned a few sentences back, I see autism appearing in more TV and films as a good thing. It makes an often invisible condition a lot more visible and helps to spread the idea that children/adults who were traditionally 'hidden away' deserve the same rights as anyone else. Insofar as the notion of 'authenticity' there have been quite a few, quite authentic portrayals of autism on TV shows. 'The A Word' was one of them (see here) (although I don't doubt some might disagree). Of course, there are always going to be creative processes acting on the fictional portrayal of autism; this goes for just about anything to do with creative media - soap operas do this all the time in the constant chase for viewer ratings. Indeed, one should never forget that TV shows and movies are in a constant state of chasing viewer ratings and not always necessarily produced with authenticity in mind.

In the context of autism also being an extremely heterogeneous condition (y'know, those 'autisms' that I keep going on about), I find it nigh on impossible that any single representation of autism is going to please all of the people all of the time. 'Authentic' is always going to be a matter of perspective...

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[1] Nordahl-Hansen A. et al. Mental health on screen: A DSM-5 dissection of portrayals of autism spectrum disorders in film and TV. Psychiatry Res. 2017. Aug 22.

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On DSM-5, Asperger syndrome and 'level of support'

It wasn't so much the findings reported by Garrido and colleagues [1] that took my attention, but rather their use of a particular sentence: "We have equated diagnosis of Asperger syndrome with ASD-level 1 of support" in the context of the DSM-5 guidance for diagnosing an autism spectrum disorder.

For those who might not know, the two main documents for diagnosing autism or autism spectrum disorder (ASD) are the ICD and DSM schedules. Both are currently under/have recently been the subject of revision (ICD-11 and DSM-5 respectively) and both have played a significant role in relation to various aspects around autism (see here for example).

The quite recently revised DSM-5 description of autism (see here) has been the source of quite a lot of discussion. Not only that the latest description might have some quite important effects on the numbers of people potentially being diagnosed with autism or ASD (see here) but also that this revision did away with the diagnostic sub-categories included in previous DSM versions; notably the diagnosis of Asperger syndrome. There were mechanisms built into the DSM-5 such that those already diagnosed with Asperger syndrome (AS) would not lose out in terms of 'identity' but as the DSM-5 becomes more readily used (and also assuming ICD-11 allies with DSM-5 as anticipated), the specific diagnosis of AS is likely to be consumed by the broader ASD label in the longer term. Other authors have talked about the hows-and-whys of this issue in more informed detail than I ever could (see here although I think the authors needs to spellcheck 'Asperger' in some places).

With that rather long introduction in mind, I want to go back to that 'ASD-level 1 support' labelling of AS in the Garrido paper. DSM-5 criteria for autism, sorry ASD, does provide the diagnosing team with an option to place the recipient of a diagnosis on a scale of severity ranging from 'requiring support' to 'requiring very substantial support' shown as levels 1-3 respectively. The assumption is that money and resources will be attached at varying degrees based on the support level indicated. The level 1 support option applied to AS presumes that the dyad of symptoms - social affect and restricted, repetitive behaviours - does impact on day-to-day functioning but issues such as the consistent and complex use of language as a communicative strategy for example, puts their support requirements below say those with 'marked' or 'severe' deficits in verbal and nonverbal social communication skills. Fair enough. When however it comes to the repetitive behaviour side of things in terms of severity, level 1 support basically acknowledges that inflexible behaviour "causes significant interference with functioning in one or more contexts" but importantly, does not use words like 'distress' as it does in level 2 and 3 descriptions.

I may just be focusing too much on details here, but it strikes me that the sweeping assumption made by Garrido et al reveals a broader issue with level of support shown in DSM-5. Although there is not a great deal of peer-reviewed research out there on the severity/support level components to the DSM-5 ASD diagnosis, the work that is there tends to suggest a degree of 'fuzziness' both in the pattern of skills/deficits displayed in relation to autism and onward how clinicians might define decisions on support level [2]. What seems to be inferred with the level of support criteria offered in DSM-5 is that those with a current diagnosis of AS as a group - this diagnosis then changing to ASD - will seemingly never hit criteria for levels 2 or 3 on the basis of the language and communicative skills they possess. I say this with the understanding that I'm not precisely sure whether the individual components of the dyad - social affect and restricted, repetitive behaviours - are separately graded in terms of level of support needed in DSM-5 or just condensed into one severity level for all the diagnostic components combined. Garrido and colleagues imply that one severity level is likely going to be the rule.

There is another issue that needs comment, on whether at least some cases of AS actually meet the operational criteria of DSM-5 ASD over and above the new categorisation of social (pragmatic) communication disorder (SCD) (see here). I can see this being a contentious point. SCD as the name suggests, focuses on 'the social use of verbal and nonverbal communication' and how 'deficits result in functional limitations in effective communication, social participation, social relationships, academic achievement, or occupational performance, individually or in combination'. Previous data has suggested that something approaching 10% of cases of AS - redefined as ASD in DSM-5 - might not actually meet DSM-5 criteria for ASD but might hit diagnostic thresholds for SCD [3]. As I've asked before on this blog, what level of support are those with SCD likely to get? and what are the implications for 'membership' of the autism spectrum for those diagnosed with SCD? are questions that still need answering.

I have been a little pedantic in this post but do want to convey the message that even with the redefinition of AS into ASD, the DSM-5 severity/level of support descriptions are in need of a lot more experimental study to see how they work in real-life [4]. Indeed, further longitudinal studies on how DSM-5 diagnosis and severity 'grading' translate into money, resources and services offered and received and onward outcomes for those diagnosed, should really be in the planning stages as we speak...

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[1] Garrido D. et al. Communicative and social-adaptive profile in children with autism spectrum disorder: a new approach based on the DSM-5 criteria. Rev Neurol. 2017 Jul 16;65(2):49-56.

[2] Weitlauf AS. et al. Brief Report: DSM-5 “Levels of Support:” A Comment on Discrepant Conceptualizations of Severity in ASD. Journal of autism and developmental disorders. 2014;44(2):471-476.

[3] Kim YS. et al. A comparison of DSM-IV pervasive developmental disorder and DSM-5 autism spectrum disorder prevalence in an epidemiologic sample. J Am Acad Child Adolesc Psychiatry. 2014 May;53(5):500-8.

[4] Burns CO. & Matson JL. An evaluation of the clinical application of the DSM-5 for the diagnosis of Autism Spectrum Disorder. Expert Rev Neurother. 2017 Jul 5.

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