The ICD-11 diagnostic criteria for autism: criteria that actually gets it right?

I'd love to say that this post represents me getting back into autism research blogging but alas, I'm not sure I'd be able to stick to any sort of routine or plan. Work, family, karate, so many Star Wars spin-offs to watch, you know what it's like. Suffice to say that something important brought me back to making this entry: the ICD-11 criteria for autism (see here). 

So why blog about it? Well simply because I reckon that this latest version of one of the major ways that autism or autism spectrum disorder (ASD) is diagnosed is basically as good as we've ever got at defining autism and the various nuances around an autism diagnosis. 

Why? Lots of reasons, and I would invite as many people as possible to survey the criteria which is free for all to read. For me, it's as follows:

1. Autism, the catch-all diagnosis, is now not just singular autism, it's more. Much more. The criteria still consists of the timeless social communication issues (social affect as it was once called) and "persistent restricted, repetitive, and inflexible patterns of behaviour, interests, or activities." It's still talks about early onset (although the 'before 3 years of age' bit is long gone as in previous versions). Importantly it still talks about symptoms resulting in "significant impairment in personal, family, social, educational, occupational or other important areas of functioning." This last point is often not as well remembered as it should be, particularly in certain social media circles. But more than all that we now have separate diagnostic sub-codings for things like the presence of intellectual (learning) disability and functional language impairment in a sort of pick-and-mix matrices combination. The DSM-5 also tried this with their 'levels of support' or, dare I say it 'severity levels' (see here). Allied to all that is another sub-coding: loss of previously acquired skills. Y'know, all those reports of regression or plateau in skills that parents and caregivers talked about? They've been taken seriously and at last, now feature as part of the diagnostic work-up. Minus any 'I told you so' sentiments, we've already published on this a few years back (see here). The road has been long. Wow.

2. Alongside the core clinical features are quite a few other headings covering other types of behaviour that one may see accompanying autism. Anxiety, seizures and here's one: self-injurious behaviours (SIB). No it doesn't make for great reading (SIB can be absolutely devastating to the person concerned and their family) but at last, acknowledgement that it's an issue for some. There's also talk about other comorbidities / multi-morbidities (that's comorbidity not co-occurrence) to look out for. Some psychiatric, some behavioural and some somatic. Get ready for another 'I told you so' moment (see here). 

3. Standby for something really important included in the ICD-11 criteria: a list of some 18 other conditions where autistic signs and symptoms can significantly present is also provided. This is new. The list ranges from things like ADHD (attention-deficit hyperactivity disorder) to schizophrenia to personality disorder(s). Developmental coordination disorder (DCD) aka dyspraxia is also in there and acknowledges something that even the great Leo Kanner talked about. This will help clinicians (yes, the people who conduct formal autism assessments) no end. It means that they should also be on the look out for various other conditions when they make their assessments (indeed, if any of those listed overlapping conditions are also present in clinic, it might mean looking for autism too). I'll also, at this point, add in the almost forgotten issue of social (pragmatic) communication disorder (SCD) from the DSM-5 too. I'm also interested in that list of overlapping conditions because they seem to becoming more and more important to autism. Take schizophrenia for example. Did you know that an estimated 1 in 10 people with autism might be at risk of transitioning over to schizophrenia over a 10 year period according to this study from 'big data Taiwan'? And more recently we've seen research all about ADHD 'transitioning' into ASD as a primary diagnosis (see here); prodromal period anyone? Oh, and I should also mention that the word 'encephalitis' figures in those boundary conditions. I'd like to think this would trigger a lot more discussion and study on how immune system / inflammatory conditions *might* play a role in at least some autism. I say this on the back of our recent-ish review of autoimmune encephalitis and autism (see here) and my continuing interest in such things.

So there you have it citizens (hat-tip to the late great Christopher Plummer!), the ICD-11 diagnostic criteria for autism. Obviously we'll have to see where it all goes, but certainly, as the criteria beds in, diagnostic reports will get more and more detailed which has to be a boon for things like EHCPs (Education, Health and Care Plans) and getting things right for people (particularly children) when diagnosed. As for research, well, that will benefit too, given the more detailed diagnostic starting point other than just 'autism vs. non-autistic controls'. I reckon we're going to be seeing more and more objective biological markers in the coming years. One more thing: you've no doubt heard about the term 'profound autism'? Well, it looks like ICD-11, like DSM-5, is going to forward this concept a lot more in times to come. 

Peace be with you.

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Hsu TW, Chu CS, Tsai SJ, Hsu JW, Huang KL, Cheng CM, Su TP, Chen TJ, Bai YM, Liang CS, Chen MH. Diagnostic progression to schizophrenia: A nationwide cohort study of 11 170 adolescents and young adults with autism spectrum disorder. Psychiatry Clin Neurosci. 2022 Dec;76(12):644-651. doi: 10.1111/pcn.13468. Epub 2022 Sep 27. PMID: 36057134.

Kopp S, Asztély KS, Landberg S, Waern M, Bergman S, Gillberg C. Girls With Social and/or Attention Deficit Re-Examined in Young Adulthood: Prospective Study of Diagnostic Stability, Daily Life Functioning and Social Situation. J Atten Disord. 2023 Mar 13:10870547231158751. doi: 10.1177/10870547231158751. Epub ahead of print. PMID: 36915033.

Sala R, Amet L, Blagojevic-Stokic N, Shattock P, Whiteley P. Bridging the Gap Between Physical Health and Autism Spectrum Disorder. Neuropsychiatr Dis Treat. 2020 Jun 30;16:1605-1618. doi: 10.2147/NDT.S251394. PMID: 32636630; PMCID: PMC7335278.

Whiteley P, Carr K, Shattock P. Is Autism Inborn And Lifelong For Everyone? Neuropsychiatr Dis Treat. 2019 Oct 7;15:2885-2891. doi: 10.2147/NDT.S221901. PMID: 31632036; PMCID: PMC6789180.

Whiteley P, Marlow B, Kapoor RR, Blagojevic-Stokic N, Sala R. Autoimmune Encephalitis and Autism Spectrum Disorder. Front Psychiatry. 2021 Dec 17;12:775017. doi: 10.3389/fpsyt.2021.775017. PMID: 34975576; PMCID: PMC8718789.

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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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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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Selective mutism and autism

The findings reported by Hanna Steffenburg and colleagues [1] make for potentially important reading reporting: "In this study of a clinical group of children who were diagnosed with SM [selective mutism] and assessed at a center for neurodevelopmental disorders, 63% also met criteria for ASD [autism spectrum disorder]."

Selective mutism (SM) refers to an anxiety disorder typically manifesting during early childhood that affects the use of spoken language in certain social situations such as at school. 'Literally being unable to speak' is a phrase that follows SM in certain contexts, where speech and language skills are not typically affected when and where family or close friends are around. It's not surprising that there is 'overlap' between SM and autism given the characterisation of SM in terms of being "nervous, uneasy or socially awkward" and "stiff, tense or poorly co-ordinated" (minus any sweeping generalisations). And just before you question it, 'poorly-coordinated' is perhaps an under-rated aspect for many people diagnosed as being on the autism spectrum (see here).

Steffenburg and colleagues - including the notable ESSENCE-related name of Christopher Gillberg - sought to examine the possible 'overlap' of SM and autism on the basis that various diagnoses/labels can occur alongside SM; quite a few of them also recognised in relation to autism (see here). Approaching 100 children/young adults diagnosed with selective mutism were assessed at the premier 'autism spectrum conditions' clinic in Gothenberg, Sweden. The clinical assessment undertaken of course covered the diagnosis of autism but also various cognitive functions too.

Almost two-thirds of those with SM who were assessed also met criteria for an autism spectrum disorder (ASD). Added to that: "A further 20% (n=19) had autistic features that were “subclinical”, but, nevertheless, sufficiently marked to have an impact on everyday life." Only 17% were described as having no ASD symptoms. Those are pretty interesting percentages.

Authors also mention how: "The level of cognitive function was average in more than half of the study group but more than one-third of the study group had a borderline IQ or an ID [intellectual disability]." They use such a finding in the context of the ESSENCE term - Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations - where overlapping diagnoses/labels is the rule not the exception.

The implications? Well, screen and keep a continual eye open for autism in cases of SM seems to be an important first implication. That also includes keeping in mind those 'subclinical' signs and symptoms, which could be relevant to discussions about the broader autism phenotype (BAP) (see here) and also that curious DSM-5 diagnostic category known as social communication disorder (SCD) (see here). The focus on 'anxiety' in relation to SM might also be important given the pretty well-established connection between autism and anxiety (see here for example) following in the footsteps of some often forgotten autism research history (take a bow Mildred Creak and colleagues for including the term "acute, excessive and seemingly illogical anxiety"). I'm also minded to mention that given the pretty high rate of autism described in SM by Steffenburg and other researchers, further investigations perhaps need to be directed towards shared biology/genetics as well as shared behavioural presentation? Y'know, along the lines of whether 'comorbidity' might be something more 'core' (see here)?

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[1] Steffenburg H. et al. Children with autism spectrum disorders and selective mutism. Neuropsychiatr Dis Treat. 2018 May 7;14:1163-1169.

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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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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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Autism and a 'clear' reduction of behavioural severity in cases diagnosed

"This study provides the first clear evidence of a reduction over time in the behavioral severity of individuals diagnosed with Autistic Disorder during a period of stability in diagnostic criteria."

So said the study findings reported by Andrew Whitehouse and colleagues [1] (a man not afraid to make waves when it comes to thinking about autism or about approaches to intervention) looking at "whether there were changes over time in the qualitative and quantitative phenotype of individuals who received the diagnosis of Autistic Disorder."

Based on prospective registry data of new autism / autism spectrum disorder (ASD) cases (N=1252) in Western Australia (a research favourite) between 2000 and 2006, researchers reported that the severity of the presentation of autism seemed to 'change' between the years. They concluded: "A shift toward diagnosing individuals with less severe behavioral symptoms may have contributed to the increasing prevalence of Autistic Disorder diagnoses." At least in Australia that is...

This is an interesting study. It kinda reiterates that when one talks about the quite phenomenal increase in diagnoses of autism being received, at least one factor contributory to that increase is the inclusion of a wider presentation of the condition. It also feeds into the discussions that have already happened, and will continue to happen, following the introduction of DSM-5 to autism diagnosis and in particular, the future role of the catch-all category that is social (pragmatic) communication disorder (SCD) (see here) when it comes to stiffer ASD diagnostic criteria not being met.

But just before anyone breaks out with the sweeping generalisation that the increasing prevalence of autism over the past two decades is somehow all 'manufactured' (exhibit one) according to the diagnostic procedures used, the available data points to something far more multi-faceted and complex (see here for example)...

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[1] Whitehouse AJ. et al. Evidence of a reduction over time in the behavioral severity of autistic disorder diagnoses. Autism Res. 2017 Jan 19.

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Whitehouse AJ, Cooper MN, Bebbington K, Alvares G, Lin A, Wray J, & Glasson EJ (2017). Evidence of a reduction over time in the behavioral severity of autistic disorder diagnoses. Autism research : official journal of the International Society for Autism Research PMID: 28102641

Lower autism rate under DSM-5 (yet again)

So: "Results indicate that individuals diagnosed with PDD [pervasive developmental disorder] by DSM-IV-TR criteria may not be diagnosed using DSM-5 criteria."

That was the conclusion reached by Ferhat Yaylaci & Suha Miral [1] following their study of 150 children (3-15 years old) diagnosed with PDD "by DSM-IV-TR" whose symptoms/presentation were "reviewed through psychiatric assessment based on DSM-IV-TR and DSM-5 criteria." The percentage figure they arrived at (19.3%) indicated that about a fifth of participants might not reach diagnostic thresholds based on the DSM-5 criteria for autism spectrum disorder (ASD). PDD in DSM-IV by the way, refers to the autism spectrum.

As per the title of this post, I'm not surprised by this data as previous independent studies have similarly shown a drop in numbers of those 'fitting' the revised diagnostic thresholds included in the latest version of the DSM (see here and see here and see here). Combined with data indicating that the new diagnostic category termed 'social (pragmatic) communication disorder (SCD)' in DSM-5 is likely to fill up rather quickly (see here) to accommodate those not reaching the ASD diagnostic thresholds, the question on everyone's lips is: what will it mean to be diagnosed with SCD in terms of function of the diagnosis, services offered and public perception?

The short answer: we don't yet know.

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[1] Yaylaci F. & Miral S. A Comparison of DSM-IV-TR and DSM-5 Diagnostic Classifications in the Clinical Diagnosis of Autistic Spectrum Disorder. J Autism Dev Disorders. 2016. Oct 17.

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Yaylaci, F., & Miral, S. (2016). A Comparison of DSM-IV-TR and DSM-5 Diagnostic Classifications in the Clinical Diagnosis of Autistic Spectrum Disorder Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-016-2937-8

Lower autism rate under DSM-5

"[The] Rate of autism spectrum disorder diagnosis was significantly lower under the recently implemented DSM-5 criteria."

The results reported by Michelle Hartley-McAndrew and colleagues [1] won't be a surprise to many of those who've been following the literature on transitioning from DSM-IV to DSM-5 criteria with autism diagnosis in mind. Indeed, I've covered the topic a few times on this blog (see here) and specifically the idea that "between 50 and 75% of individuals will maintain diagnoses" but that "the greatest decreases [were] among high-functioning populations with IQs over 70 and/or previous diagnoses of PDD-NOS or Asperger's disorder" as reported by Smith and colleagues [2] (their words not mine).

Hartley-McAndrew et al report results based on a chart review of participants attending an autism spectrum disorder (ASD) clinic. Looking at participants diagnosed with an ASD between 2010 - May 2013 using DSM-IV criteria and those diagnosed between June 2013 - June 2015 using DSM-5 criteria the authors report that "the 2013 to 2015 rate of autism spectrum disorder diagnosis (39%) was significantly lower (p<0.01) than the 2010- May 2013 sample years rate (50%)." So, unless something really dramatic has happened to the presentation of autism over those years, the stricter DSM-5 criteria employed is indeed impacting on the autism (prevalence) rate.

Following on from data (with appropriate caveats) suggesting that the rate of autism in parts of the world might be nearing 1 in 45 children (see here), the full extent of any effects from the DSM-5 change-over are not likely to be seen for some time as word continues to spread about DSM-5 (and bearing in mind that DSM is not the only diagnostic schedule around). With the cold dispassionate science spectacles on, one might see an interesting experiment emerging from the DSM transition as to the extent that the expanded diagnostic criteria of DSM-IV is represented in the autism rate as DSM-5 continues to become mainstream. I might also add that analysis of diagnostic movement to the category social communication disorder (SCD) - the unspoken 'catch-all' diagnostic category also included in DSM-5 - is likely to aid studies into how at least part of the quite massive increase in cases of autism was due to the way the condition was defined.

But then there are the questions: what if the autism prevalence rate more generally continues to rise? And what also will happen to rates of conditions such as attention-deficit hyperactivity disorder (ADHD) under DSM-5 (see here) in light of the increasing appreciation of such comorbidity quite frequently appearing when it comes to autism (see here)? I have a few hunches but let's see how this plays out.

And since we're on the topic of DSM-5 and autism, I'll point you in the direction of the 'Concise history of Asperger syndrome' review by Barahona-Corrêa & Filipe [3] (open-access) for some additional reading.

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[1] Hartley-McAndrew M. et al. Rates of Autism Spectrum Disorder Diagnosis under the DSM-5 criteria compared to DSM-IV-TR criteria in a Hospital Based Clinic. Pediatric Neurology. 2016. Jan 18.

[2] Smith IC. et al. The Effects of DSM-5 Criteria on Number of Individuals Diagnosed with Autism Spectrum Disorder: A Systematic Review. J Autism Dev Disord. 2015 Aug;45(8):2541-52.

[3] Barahona-Corrêa JB. & Filipe CN. A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis. Front Psychol. 2016 Jan 25;6:2024.

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Hartley-McAndrew, M., Mertz, J., Hoffman, M., & Crawford, D. (2016). Rates of Autism Spectrum Disorder Diagnosis under the DSM-5 criteria compared to DSM-IV-TR criteria in a Hospital Based Clinic Pediatric Neurology DOI: 10.1016/j.pediatrneurol.2016.01.012

When optimal outcome in autism meets ESSENCE

I recently came across the paper by Martina Barnevik Olsson and colleagues [1] (open-access) and their rather interesting take on the issue of optimal outcome and autism (see here for some background on this concept).

Based on the idea that a diagnosis of autism or autism spectrum disorder (ASD) might not be as immutable as perhaps once thought (as in 'no longer meeting the diagnostic criteria for the condition'), Barnevik Olsson et al reported that loss of the autism/ASD label does not necessarily translate into typical developmental service being resumed. Indeed, that the concept of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations) or autism+ if you prefer, might still influence clinical presentation and the subsequent continued "need of support, educationally, from a neurodevelopmental and a medical point of view."

Following 17 children originally diagnosed with ASD who "recovered from autism" after behavioural intervention, researchers took various 'readings' at follow-up points covering "the child’s daily functioning, school situation, and need of support." Alongside a parental interview, authors also used the Vineland Adaptive Behavior Scales (VABS) and the "Autism – Tics, Attention-deficit/hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) telephone interview" to see whether loss of the ASD label meant 'symptom-free'.

Results, and a long quote coming up:

"At the new follow-up around age 10 years, all the children had major behavioral and/or academic problems. Of the 13 children with social interaction problems in the semistructured parental interview, 12 also had repeated tantrums, nine had difficulties with hyperactivity or impulsivity, and two with passivity. Eleven of the children had difficulties concentrating, and ten had speech problems. Hence, it was evident that a majority of the children had problems in several different domains." The authors note that many of these presented symptoms fall under the umbrella term of ESSENCE. Further, that of the 14 children who's parents were available for the A-TAC interview, three of them were again considered to meet the criteria for ASD and "another six had pronounced subthreshold ASD symptoms."

Hopefully without the 'I told you so' attitude coming out to much, I have covered the issue of optimal outcome not necessarily translating into 'symptom-free' before on this blog (see here). Once again, I'm not trying to reverse my excitement about the original results from Deborah Fein and colleagues [2] but rather pushing the idea that autism is very often much more than the sum of the triad/dyad of characteristics which we use (see here). Further research from Fein and colleagues [3] has also hinted that functioning outside of the label of autism does not necessarily translate into a complete loss of certain issues too as has data from other groups.

Fluidity in the presentation of autistic traits is still something of real interest to autism research including that reaching into adulthood (see here). The Barnevik Olsson results add to that interest, incorporating the idea that quite a bit of the heightened comorbidity potentially present alongside a diagnosis of ASD may very well have some pretty significant effects on a person in terms of daily functioning and onwards issues affecting quality of life [4]. In policy terms, what this means is that just because a child (or adult) drops off the autism spectrum symptom threshold wise, may not necessarily translate into no additional help and support being required. Indeed, as per the increasing interest in the DSM-5 criteria change for autism (see here) and the rise and rise of labels such as social communication disorder (SCD) one wonders how many optimal outcomers will merely fall out of the autism/ASD label and into the SCD category?

Music: Seasick Steve - Summertime Boy.

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[1] Barnevik Olsson M. et al. “Recovery” from the diagnosis of autism – and then?  Neuropsychiatric Disease and Treatment. 2015. 11: 999-1005.

[2] Fein D. et al. Optimal outcome in individuals with a history of autism. J Child Psychol Psychiatry. 2013 Feb;54(2):195-205.

[3] Orinstein AJ. et al. Social Function and Communication in Optimal Outcome Children and Adolescents with an Autism History on Structured Test Measures. J Autism Dev Disord. 2015 Mar 11.

[4] Gotham K. et al. Depressive and anxiety symptom trajectories from school age through young adulthood in samples with autism spectrum disorder and developmental delay. J Am Acad Child Adolesc Psychiatry. 2015 May;54(5):369-376.e3.

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Barnevik Olsson, M., Westerlund, J., Lundström, S., Giacobini, M., Fernell, E., & Gillberg, C. (2015). “Recovery” from the diagnosis of autism – and then? Neuropsychiatric Disease and Treatment DOI: 10.2147/NDT.S78707

DSM-5 impacting on autism numbers

"Consistent with previous reviews, the majority of included studies indicated between 50 and 75 % of individuals will maintain diagnoses."

That was one of the conclusions reached by Isaac Smith and colleagues [1] following their systematic review of studies comparing DSM-IV and DSM-5 criteria for autism spectrum disorder (ASD) and what the changes mean for eligibility for the label.

Authors further reported that: "the greatest decreases [were] among high-functioning populations with IQs over 70 and/or previous diagnoses of PDD-NOS or Asperger's disorder" when it came to those not fitting the latest autism description in DSM.

I've got little more to say on this topic over what has been discussed previously on this blog with DSM-5 in mind (see here). The newly appointed catch-all category of social communication disorder (SCD) remains a label to watch, not just with respect to how many people will be diagnosed and what level of services/support will be offered, but also with the idea that the broader autism phenotype (BAP) might also gain some clinical recognition.

Music: Nirvana - Drain You.

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[1] Smith IC. et al. The Effects of DSM-5 Criteria on Number of Individuals Diagnosed with Autism Spectrum Disorder: A Systematic Review. J Autism Dev Disord. 2015 Mar 22.

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Smith IC, Reichow B, & Volkmar FR (2015). The Effects of DSM-5 Criteria on Number of Individuals Diagnosed with Autism Spectrum Disorder: A Systematic Review. Journal of autism and developmental disorders PMID: 25796195

Social communication disorder (SCD) reviewed

Sometimes I believe in as many as
six impossible things before breakfast.

A micropost if you will, for today, and a link to a potentially very important paper by Lauren Swineford and colleagues [1] (open-access) talking about the diagnostic concept: social (pragmatic) communication disorder (SCD) and it's various crossings with language impairments and autism spectrum disorder (ASD).

SCD, as I've indicated in other posts (see here and see here) is something that the autism community in particular, is going to be hearing a lot more about in the coming years, derived from the latest DSM-5 schedule.

Just one choice quote to offer from the Swineford paper: "Evidence of SCD was provided in the DSM-5 field trials, which indicated that a decrease in DSM-IV ASD diagnoses was accounted for by movement to SCD diagnostic category." Yes, it appears that this is already happening...

Some music then... Johnny Marr - Getting Away With It.

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[1] Swineford LB. et al. Social (pragmatic) communication disorder: a research review of this new DSM-5 diagnostic category. Journal of Neurodevelopmental Disorders 2014, 6:41.

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Swineford, L., Thurm, A., Baird, G., Wetherby, A., & Swedo, S. (2014). Social (pragmatic) communication disorder: a research review of this new DSM-5 diagnostic category Journal of Neurodevelopmental Disorders, 6 (1) DOI: 10.1186/1866-1955-6-41

Autism, siblings and DSM-5 Social Communication Disorder

A quick post to bring to your attention the paper by Meghan Miller and colleagues [1] who concluded that: "Pragmatic language problems are present in some siblings of children with ASD [autism spectrum disorder] as early as 36 months of age". Further: "As the new DSM-5 diagnosis of Social (Pragmatic) Communication Disorder (SCD) is thought to occur more frequently in family members of individuals with ASD, it is possible that some of these siblings will meet criteria for SCD as they get older".

Isn't this a school day?

The DSM-5, as many in the autism community will already know, has been the source of quite a bit of discussion/argument as to how it has started to re-define what we label as autism or autism spectrum disorder. The initial signs have been that use of the DSM-5 criteria does indeed impact on the numbers of cases of autism (see here) and in particular, that the category termed 'Social Communication Disorder' (SCD) is filling up with those who might present with social communication issues without the repetitive or restricted behaviours required to fulfil the ASD label. Whether this implies the same levels of services and resources will be available to those with SCD as it is supposed to for those with ASD remains to be seen.

I did wonder whether the Miller findings were an important indication (although not the first [2]) that science might also be putting a bit more flesh on to the bones of the concept of a broader autism phenotype (BAP). Describing the subtle speech and language and social interactive issues described on the diagnostic borderlands of autism [3], it strikes me that there is more than a smidgen of overlap between SCD and the BAP (at least with more strength of data than the suggestion of a link between the BAP and postnatal depression). With cautions down the years about assuming "all children with pragmatic difficulties have autism" [4], does the advent of the SCD diagnostic category offer a viable alternative?

Music to close, and the sheer brilliance of Morrissey (live). And for those who might want to know a little more about the man behind the music: The Importance Of Being Morrissey.

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[1] Miller M. et al. Early pragmatic language difficulties in siblings of children with autism: implications for DSM-5 social communication disorder? J Child Psychol Psychiatry. 2014 Oct 15.

[2] Botting N. & Conti-Ramsden G. Pragmatic Language Impairment without Autism. Autism. 1999; 3: 371-396

[3] Dawson G. et al. Defining the broader phenotype of autism: genetic, brain, and behavioral perspectives. Dev Psychopathol. 2002 Summer;14(3):581-611.

[4] Bishop DV. & Norbury C. Exploring the borderlands of autistic disorder and specific language impairment: a study using standardised diagnostic instruments.  Journal of Child Psychology and Psychiatry. 2002; 43: 917–929. doi: 10.1111/1469-7610.00114

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Miller M, Young GS, Hutman T, Johnson S, Schwichtenberg AJ, & Ozonoff S (2014). Early pragmatic language difficulties in siblings of children with autism: implications for DSM-5 social communication disorder? Journal of child psychology and psychiatry, and allied disciplines PMID: 25315782

Autism across DSM-IV and DSM-5 descriptions

The paper/poster(?) by Harker & Stone [1] kinda says it all when it comes to the question: what changed in the description of autism between the DSM-IV-TR and DSM-5? The added bonus of comparing the US IDEA (Individuals with Disabilities Education Act) description of autism with DSM-5 will, I assume, also be important to quite a few people not least when it comes to any further research which uses the datasets on numbers of cases for example (see here).

I have little more to say aside from reiterating what already appears to be happening when it comes to the use of the revised descriptions of autism - autism spectrum disorder - in DSM-5 on numbers being diagnosed (see here). That and the requirement for quite a bit more investigation on the social communication disorder (SCD) category [2] including what a diagnosis of SCD actually translates into in terms of services and provisions offered compared to a DSM-5 diagnosis of ASD...

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[1] Harker CM. & Stone WL. Comparison of the Diagnostic Criteria for Autism Spectrum Disorder Across DSM-5, DSM-IV-TR, and the Individuals with Disabilities Act (IDEA)3 Definition of Autism.

[2] Norbury CF. Practitioner review: Social (pragmatic) communication disorder conceptualization, evidence and clinical implications. J Child Psychol Psychiatry. 2014 Mar;55(3):204-16.

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The potential impact of DSM-V on autism numbers

I don't really want to get too bogged down with the various discussions which have passed to-and-fro when it came to the expected impact of the introduction of DSM-V on autism prevalence estimates. I couldn't however let the publication of the paper by Matthew Maenner and colleagues* pass by without making some comment on it (or at least directing readers the various comments being made about it: see here and see here).

To summarise the new study: retrospectively apply the new DSM-V criteria for receiving a diagnosis of autism (sorry, autism spectrum disorder) to data pertaining to a cohort of children previously diagnosed with DSM-IV autism and see how much overlap there is. I think back to similar study when it came to comparing even earlier versions of DSM on autism prevalence estimates (see here) and the interesting effects that seemed to have.

The good news from the Maenner study: 81% of those DSM-IV classified as having autism were also DSM-V classified as having autism. Interestingly, also that those with comorbid intellectual disability or with a history of developmental regression were slightly more likely to meet the DSM-V criteria for autism. The not-so-good news: er, what happens to those children who didn't quite reach the DSM-V diagnostic thresholds..? Social communication disorder (SCD)? Well, we don't know yet because SCD wasn't looked at in the current study, and as far as I can ascertain, SCD is still wanting in terms of research into the diagnosis and indeed, outcomes. Just as an aside, I wonder if it might however also cover some of those unusual ICD codes relevant to autism?

Of course, as the various media on this paper point out, this was a study based on case notes or rather "clinician review of coded behaviors documented in children’s medical and educational evaluations" so one has to be a little bit cautious of making too many judgements. According to the Autism Speaks website there is further work coming to publication soon looking at more "in-person diagnostic evaluations" across both DSM-IV and DSM-V (see here). Perhaps some more concrete answers might emerge from that data; hopefully slightly more optimistic than the results from Wilson and colleagues**.

I'm gonna finish with a link to an interesting blog post by Allen Frances, who was previously Chair of the DSM-IV taskforce, titled: "Will the DSM-5 Reduce Rates of Autism?". According to the Maenner results, Dr Frances is correct in his assertion "Yes, by a lot" (or at least by about 20%). The arguments will no doubt rumble on about DSM-V (and don't even mention RDoC).

Update: 27 January 2014. And then came the paper by Kim and colleagues*** and some chatter about their findings. It seems that the SCD diagnostic coding would serve as a catch-all after all, for most of those not fulfilling the DSM-V criteria for ASD. All well and good I suppose but the questions about SCD remain in terms of what a diagnosis will actually mean for access to services and required provisions.

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* Maenner MJ. et al. Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates. JAMA Psychiatry. January 22, 2014. doi:10.1001/jamapsychiatry.2013.3893

** Wilson CE. et al. Comparison of ICD-10R, DSM-IV-TR and DSM-5 in an adult autism spectrum disorder diagnostic clinic. J Autism Dev Disord. 2013 Nov;43(11):2515-25.

*** Kim YS. et al. A Comparison of DSM-IV PDD and DSM-5 ASD Prevalence in an Epidemiologic Sample. Journal of the American Academy of Child & Adolescent Psychiatry. 2014. 23 Jan.

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Matthew J. Maenner, Catherine E. Rice, Carrie L. Arneson, Christopher Cunniff, Laura A. Schieve, Laura A. Carpenter, Kim Van Naarden Braun, Russell S. Kirby, Amanda V. Bakian, & Maureen S. Durkin (2014). Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates JAMA Psychiatry : 10.1001/jamapsychiatry.2013.3893