"If you want to support Greta Thunberg, don’t do it by defending her autism – stand up for her beliefs instead"

The quote titling this post - "If you want to support Greta Thunberg, don’t do it by defending her autism – stand up for her beliefs instead" - comes from a recent newspaper report by James Sinclair on the noble actions of the 16-year old Greta Thunberg, the current poster person for student activism.

Many people will have heard of Greta and her school strike for climate which snowballed into an international movement demanding action on global warming and climate change. She's subsequently been named as "one of the 100 most influential people of 2019" and could even be in the running for a Nobel prize later this year (2019). Not many teenagers can add those sorts of credentials to their CV...

Alongside the important message that Greta has spread, the revelation that she has a diagnosis of autism - Asperger syndrome - has not escaped media and indeed, social media attention. Her autism diagnosis (Asperger syndrome is now pretty much defunct as a clinical diagnosis) has, in many ways, been placed front-and-centre of her story, but not always in the politest of terms.

The Sinclair feature on Greta caught my eye for several different reasons. Diagnosed himself with autism, Sinclair approaches an important part of the Greta Thunberg story: how autism is not necessarily relevant to the important climate change message that is being promulgated. Indeed, some stand-out quotes from his article are worthwhile circulating widely: "This is why many including myself struggle with sharing our diagnosis with people, as once we do everything is viewed through a person’s past experiences and expectations of autism" and "It suggests that autism is still perceived as something we must all scramble to protect at a moment’s notice."

Why is this relevant? Well, potentially for lots of different reasons, some of which have kinda been picked up in a recent paper by Lily Cresswell & Eilidh Cage [1] which was blogging fodder (see here) not so long ago. The message then - albeit a message derived from a small participant number - was that autism is not necessarily the 'identity' that some would like it to be represented as. For example, as reported in the Cresswell/Cage result: "less than half of participants mentioned autism in their identity descriptions", inferring that many young people potentially see themselves and their achievements/struggles as so much more than due to the receipt of a clinical diagnosis. And one can perhaps see that the continual pressure to make autism a part of any successful narrative, whilst noble in intent, seemingly does little for either the individual and their personal accomplishments nor the masses, on the basis of the significant heterogeneity of autism and how autism for some means things like early mortality (see here) and lots and lots more besides. It perhaps should also be noted that depression has also been mentioned by Greta too: "After learning about climate change when she was 8, Greta later developed depression when she was 11, which she links partly to the issue" but this point doesn't seem to have been widely picked up on even bearing in mind that autism / autistic traits and depression have some important links (see here for example).

I appreciate that my ramblings about autism not necessarily being an identity for all nor not always relevant to a person's socio-political messages aren't likely to be received well by everyone. That's fine. I'll end however with comments from Greta herself and her views of autism and other labels "not being a gift." The caveat she makes to that point being that with appropriate adjustments, support and resources, there are things that can make life easier for those on the autism spectrum and beyond. Bearing in mind that is, the need for 'personalisation' of such supports and a move away from any 'one-size-fits-all' philosophy.

And whilst I'm on the topic of Greta Thunberg, it seems as though her autism diagnosis is now being dragged into the 'autism wars' too (see here). Yet another example of her important climate message seemingly being overshadowed...

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[1] Cresswell L. & Cage E. ‘Who Am I?’: An Exploratory Study of the Relationships Between Identity, Acculturation and Mental Health in Autistic Adolescents. J Autism Dev Disord. 2019. April 19.

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Was Asperger really 'non-complicit' in Nazi-era Vienna?

The paper published by Dean Falk [1] was bound to happen. Her analysis of "newly translated and chronologically-ordered information" regarding Hans Asperger - the man who gave his name to Asperger syndrome - represents a push-back against some pretty overwhelming information [2] suggesting that Asperger was not necessarily the 'saviour' that many had once believed (see here).

For those who might not know the background to this story, the article written by John Donvan & Caren Zucker [3] back in 2016 provides an excellent overview. It charts how the man who defined the (now defunct) label of Asperger syndrome worked in some pretty dark times. The depiction of Asperger during the years of Nazi occupation for many years was one of "a cautious yet brave and canny saboteur of the Nazi project to exterminate intellectually disabled children." Donvan & Zucker note that "an overwhelmingly positive narrative of Asperger as a man of moral rectitude came into focus in the new millennium, elevating him almost to the status of hero."

But as far back as the 1990s, not everyone was convinced by this narrative. Indeed, as Asperger syndrome made it's [fairly brief] entry into one version of the DSM, one of the diagnostic 'bibles' used to diagnose autism and a whole host of other behavioural and/or psychiatric conditions, questions were already being asked and not just by one person. It took however another 20 years or so before a historian, Herwig Czech, did some real 'digging' and presented the results of his research. Czech's conclusions were summarised by Donvan & Zucker: "Asperger took care during the war to safeguard his career and to burnish “his Nazi credibility.” Asperger, it would appear, did what was necessary."

The Falk paper talks about 'newly translated' information but really doesn't provide much more data than that which was already unearthed by Czech and other researchers/writers. We're told that various on-line translation services were used to translate several documents; specifically looking at "cultural contexts, Asperger's sustained campaign on behalf of disabled children, and his attitude toward patients."

I've read the full-text of the Falk paper and have to say that I really can't see how it substantially changes some key points. One primary issue is that Asperger seemed to have referred a child - Herta Schreiber - "from the University of Vienna Children’s Clinic to Am Spiegelgrund, where they [children] were murdered between 1940 and 1945." Spiegelgrund was a facility "which superficially resembled a hospital, but which functioned in reality as a killing center for severely disabled children." One might quibble about some of the translations and what was meant by them in terms of intent, but for Herta, such a referral apparently signed by Asperger, was her death sentence: "On 2 September, a day after her third birthday, Herta died of pneumonia, the most common cause of death at Spiegelgrund, which was routinely induced by the administration of barbiturates over a longer period of time." Did Asperger know about what really went on at Spiegelgrund? Certainly other doctors who Asperger worked with seemed to know what was going on there including some of his colleagues and direct superiors. Surely also, given the very consistent number of deaths from 'pneumonia' - many only a matter of weeks after children were referred to Spiegelgrund - most doctors would be questioning what was going on there if they didn't already know. And then we have the post-war picture, and how little was seemingly said about children like Herta by Asperger after the true nature of facilities like Spiegelgrund came to light...

We can never truly know what went on during those dark years. We rely on incomplete records that have been meticulously pieced together to provide a picture; albeit an incomplete picture. Asperger died in 1980 so he is not around to answer the points raised and defend himself. But never forget that Herta was a child. She was 3 years old when she was murdered. On the basis of that important fact alone, and the apparent referral made by Asperger to the place of her death, I find the Falk paper mentioning the word 'non-complicit' to be distasteful and disrespectful to her memory. I similarly find the campaign to restore the 'hero status' of Asperger distasteful and disrespectful to her memory and many others who were considered less than human by such a disgusting regime. To quote from the Donvan & Zucker piece once more: "Czech spoke for only 20 minutes or so that day at the Vienna City Hall. Then he stopped to take audience questions. In that pause, Dr. Arnold Pollak, the director of the clinic where Asperger had worked for much of his career, leapt to his feet, clearly agitated. Turning to the room, he asked that everyone present stand and observe a moment of silence in tribute to the many children whose long-forgotten murders Herwig Czech had returned to memory. The entire audience rose and joined in wordless tribute."

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[1] Falk D. Non-complicit: Revisiting Hans Asperger's Career in Nazi-era Vienna. J Autism Dev Disord. 2019 Mar 18.

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

[3] Donvan J. Zucker C. The Doctor and the Nazis. Tablet. 2016. Jan 19.

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"Ashleigh's vision problems were misdiagnosed as autism"

The quote titling this post - "Ashleigh's vision problems were misdiagnosed as autism" - comes from a TV programme that was picked up by the BBC news website recently.

It continues a theme in recent times showing examples where autism has been seemingly 'misdiagnosed' (see here and see here) at the cost of other recognised medical conditions being present. Such misdiagnoses have many potential implications; not least for the various trends in some quarters to 'self-diagnose' autism or self-identify as autistic without any formal assessment seemingly being undertaken (see here and see here).

So what was the misdiagnosed condition this time around? Well, it's potentially an important one because is covers a topic rather salient to autism: vision and the processing of visual (sensory) information (see here for example). To quote: "After being misdiagnosed with Asperger syndrome, Ashleigh later found out that her behavioural problems actually came from Cerebral Visual Impairment (CVI)." When describing CVI, the key point I get from the descriptive literature is that vision is not just about the eyes but also what the brain does to/with the visual information collected through the eyes.

Aside from the label 'Asperger syndrome' disappearing from diagnostic texts and discussions for various reasons (see here and see here), a quick glance at some of the information on CVI reveals that the potential misdiagnosis of autism when CVI was present is not something entirely new (see here). To quote from the RNIB (Royal National Institute for the Blind) website here in Blighty: "Many of the standard special needs assessments generally fail to identify children with CVI. If anything there is a danger that they may be misdiagnosed as possibly having autistic spectrum condition, due to some of the characteristics being shared. Not being able to maintain eye contact or respond to facial expressions, may be due to poor contrast sensitivity or to the part of the brain that recognises facial expressions being impaired." They don't however discount the idea that CVI and autism can co-occur - "Of course CVI and autism can co-exist" - something that an expert I mentioned this study to confirmed and something noted in the peer-reviewed science literature [1] too. But misdiagnosis is also a potential risk.

I'm not going to say too much more on this topic aside from reiterating an oft-mentioned phrase on this blog: the diagnosis of autism should be a starting point for further investigations and not the finishing line. I appreciate that to many people - individuals and their parents/caregivers - the time and effort spent actually getting and going through assessment and diagnosis of autism feels like it should be the finishing line (see here). But please, don't stop there. Keep questioning and importantly, keep screening, and screening for lots of different things. As per the example of Ashleigh, there may be lots more to see (pardon the pun) and in some cases, potentially novel and important 'intervention' avenues to consider to improve quality of life [2]...

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[1] Bosch DG. et al. Cerebral visual impairment, autism, and pancreatitis associated with a 9 Mbp deletion on 10p12. Clin Dysmorphol. 2015 Jan;24(1):34-7.

[2] Bartel T. Mystery solved: Our son's autism and extreme self-injury is genetic and treatable. Am J Med Genet A. 2017 May;173(5):1190-1193.

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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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"psychiatric diagnoses, psychiatric care and psychotropic medication" in older age adults with autism

Is 55 years old still considered older age?

Well, according to the findings reported by Lena Nylander and colleagues [1] it represents the lower end cut-off point for their study looking at "the pattern of coexistent psychiatric diagnoses and the utilisation of psychiatric care and psychotropic medication among any individuals found to have ASD [autism spectrum disorder] diagnoses." Said individuals were aged between 55 and 96 in 2012 and "had a registered diagnosis of any ASD—defined as an ICD-10 code."

Those individuals 'found to have ASD' were located via some of those very useful Scandinavian population registries, this time based in Sweden. As a function of their registration for 'municipal services' researchers were also able to access other collected records and subsequently mined data on "gender, other psychiatric diagnoses, psychiatric care utilisation and psychotropic medication [use]" for a group of increasing research and clinical importance in the context of autism (see here).

The results proved interesting. Of the 600 people included for study, most had received a diagnosis of childhood autism (~40%), most had not received a concomitant intellectual disability (ID) diagnosis (~60%) and quite a few had received more than one 'type' of autism diagnosis (~15%).

When it came to the receipt of other psychiatric diagnoses such as affective disorder, personality disorder, anxiety or psychotic disorder, several notable observations were made. As a function of the total group, including everyone whether diagnosed with an ID or not, around 50% of participants had received at least one psychiatric diagnosis. A nebulous category defined as "other psychiatric diagnosis" was most frequently mentioned, but when it came to a named class of condition(s), affective disorders led the way in terms of frequency irrespective of the presence of ID or not. Affective disorders covers quite a bit of diagnostic ground but typically includes labels/conditions such as depression and/or bipolar disorder; conditions that are no stranger to autism (see here and see here respectively). Anxiety and psychotic disorders were also mentioned as being present among this cohort too; again not for the first time (see here and see here).

With regards to 'psychiatric care utilisation', it was more typical to see psychiatric care used than not used as nearly two-thirds of the cohort had used some kind of psychiatric care over the period included for study examination. Most were categorised as "general adult psychiatric care" and: "The group with Asperger’s syndrome had the highest number of people who had spent time as psychiatric inpatients" reflected in the odds ratio (OR) generated from the study for this group (OR: 6.87, 95% CI 3.80–12.43).

Finally, on the topic of psychotropic medication use, researchers observed that "63% of patients without registered ID diagnosis and as many as 84% of those with ID in combination with ASD had been prescribed antipsychotic medication." Antipsychotics were the most frequent medication mentioned in records, closely followed by anxiolytics (to manage anxiety) and antidepressants. Around 1 in 5 participants received more than one type of medication (irrespective of the presence of ID or not).

An important picture emerges from the Nylander findings. A picture suggesting that psychiatric diagnoses feature fairly prominently in the clinical profile of many older age adults with autism, and their identification and intervention need to be more clearly recognised. Nylander also pointed out that certain sub-groups within the autism spectrum should perhaps be more closely followed in relation to their achieving and maintaining good mental health. So, without trying to focus too much attention on one label: "It seems that the group with Asperger’s syndrome, or ASD without ID, is especially vulnerable to psychiatric disorders" on the basis that: "Only 15 individuals, or 11%, of the group with Asperger’s syndrome had not been in contact with psychiatric care, and 43% had been psychiatric in-patients, which may be interpreted as a sign of vulnerability in these individuals." That word again  - vulnerability - arises in the context of autism (see here and see here for other examples). And here is yet another example (see here) illustrating that phrases like 'high-functioning' in the context of the autism spectrum, really don't do justice to the lived experience of autism and the effects of it's important add-ons.

And on the topic of ageing and autism, and specifically ageing well, there are the findings reported by Ye In Hwang and colleagues [2] to consider, and specifically: "A very small proportion (3.3%) of autistic adults were found to be aging well."

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[1] Nylander L. et al. Older Adults with Autism Spectrum Disorders in Sweden: A Register Study of Diagnoses, Psychiatric Care Utilization and Psychotropic Medication of 601 Individuals. J Autism Dev Disord. 2018. April 16.

[2] Hwang YI. et al. Aging Well on the Autism Spectrum: An Examination of the Dominant Model of Successful Aging. J Autism Dev Disord. 2018. May 2.

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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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On the "co-occurrence of autism and delinquency": no association for the majority

"The extant research shows that for most people with ASD [autism spectrum disorder] there is no association between ASD and delinquent behavior."

That was one of the primary conclusions reached in the literature review published by Alexa Rutten and colleagues [1] (open-access) looking at the collected peer-reviewed science from 1990 to 2015 on this topic. Boiling down the literature to 12 papers "five of which report the prevalence of delinquency in patients with ASD and seven the prevalence of ASD in a forensic population", authors reported on quite a lot of variability when it came to delinquency and offending behaviours but overall, offending behaviour was "lower in people with ASD than in the general population."

This is welcomed research. It reiterates what many people have already known/suspected, in that the label 'autism' for many is not typically associated with intentional delinquency or offending behaviour. As Rutten et al note: "many people with ASD have an overactive sense of right and wrong and are usually conscientious and unwilling to break the law." I should also point out that a diagnosis of autism is not however necessarily some kind of 'shield' when it comes to offending behaviour (see here and see here for a more recent example) or indeed, potential 'vulnerability' to becoming involved in specific offences (see here). But serious 'intentional' delinquency is not the norm; even that is, in the context of something like greater likelihood of contact with law enforcement agencies (see here).

There are still lessons to learn in this area of research and practice. Certain 'over-represented' comorbidity appearing alongside autism is still something to potentially consider [2] as per other findings (see here and see here). I say that without 'trying to pass the [diagnostic] buck'. Bearing in mind also how wide the autism spectrum is, specific diagnoses on the spectrum might also require further study as per the authors comments: "The prevalence of ASD diagnoses, particularly Asperger’s syndrome, in forensic settings is remarkable because it is much higher than the prevalence of ASD diagnoses in the general population." At this point I'll also refer you once again to the comprehensive review paper by Tom Berney [3] that mentions some of the potential how-and-whys of offending in the specific context of Asperger syndrome, again minus any sweeping generalisations. Recent media attention on previously undiagnosed Asperger syndrome in a prison context also makes for important and relevant reading too (see here) particularly where substance abuse is prominently mentioned (see here).

I would however question one rather sweeping statement made by Rutten and colleagues: "It is important to diagnose ASD carefully and to differentiate autism symptoms such as a lack of empathy from psychopathic traits". Lack of empathy and autism? Hmm, sounds a bit old hat to me...

I will again close with the point made that for the majority of people on the autism spectrum, the label is much more likely to be associated with law abiding rather than law breaking.

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[1] Rutten AX. et al. Autism in adult and juvenile delinquents: a literature review. Child and Adolescent Psychiatry and Mental Health. 2017; 11: 45.

[2] Newman SS. & Ghaziuddin M. Violent crime in Asperger syndrome: the role of psychiatric comorbidity. J Autism Dev Disord. 2008 Nov;38(10):1848-52.

[3] Berney T. Asperger syndrome from childhood into adulthood. Advances in Psychiatric Treatment. 2004. 10; 341-351.

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The links between autism and ADHD: sibling study adds a new layer

'A diagnosis of autism or autism spectrum disorder (ASD) does not typically appear in a diagnostic vacuum'. I've said that sentence several times on this blog (see here for example) in line with how science has shown that many different labels (both behavioural and somatic) are over-represented when it comes to a diagnosis of autism. All very ESSENCE like (see here)...

Of the various over-represented comorbidity, attention-deficit hyperactivity disorder (ADHD) - either in symptoms or in diagnosis - is one of the more common ones (see here); something that has implications for screening (see here) and also management. The findings reported by Yi-Ling Chien and colleagues [1] (open-access) add something to the research looking at the possible hows-and-whys of ADHD appearing alongside autism with their focus on "unaffected siblings of probands with autism and Asperger syndrome (AS)." Such work ties into that observing 'unaffected by autism' does not necessarily mean 'symptom or trait-free' in the context of ideas such as the broader autism phenotype (BAP) (see here).

With the aim to "investigate the ADHD-related traits and attention performance in unaffected siblings of probands with autism and Asperger syndrome (AS), as well as the clinical correlates of ADHD-related traits" researchers concluded that generally, unaffected siblings (unaffected by autism) of those diagnosed with an ASD "were more hyperactive/impulsive and oppositional" than those so-called typically developing controls. The finding was based on the use of various questionnaires/schedules pertinent to both the "the core symptoms of DSM-IV ADHD" and also tests to "assess attention performance."

Of particular note was the observation of "more ADHD and oppositional traits in unaffected siblings of AS probands" when looking at subgroups on the autism spectrum. With caution, the authors suggest that such a finding may be evidence "that these traits might be a broader phenotype for AS." They also posit that "more severe ADHD-related symptoms in AS probands rather than autism probands suggest that these two subtypes may not be the same in their clinical expression regarding ADHD symptoms." In these days of plural autisms (see here), things seemingly get even more complicated when diagnostic subgroup x comorbidity is also thrown into the mix.

Although quite a bit more investigation is required in this area, there is at least one important point to take from the Chien work: unaffected siblings of those diagnosed with autism - particularly Asperger syndrome - may benefit from preferential clinical assessment for something like ADHD. I say that with the understanding that a diagnosis of ADHD has been linked to a heightened risk of various 'adverse' outcomes in the longer term (see here and see here) and again, minus any sweeping generalisations, specific interventions for ADHD can seemingly mitigate quite a bit of that excess risk (see here) and onward improve quality of life and more.

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[1] Chien Y-L. et al. ADHD-related symptoms and attention profiles in the unaffected siblings of probands with autism spectrum disorder: focus on the subtypes of autism and Asperger’s disorder. Molecular Autism. 2017; 8: 3.

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The stability of an Asperger syndrome diagnosis continued

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

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

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

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

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

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

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

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

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

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

Autism + depression = more medical issues?

I wanted to draw your attention to the paper by Greenlee and colleagues [1] today, talking about how: (a) "Co-occurring depression is a particularly common problem in higher-functioning older children" with autism, and (b) "children with ASD [autism spectrum disorder] and a history of a depression diagnosis are more likely to also have co-occurring medical problems" at least in their cohort.

Published as part of a supplement about autism in the journal Pediatrics (see here), the Greenlee paper describes findings based on the examination of over 1200 children and young adults diagnosed with an ASD derived from the "Autism Speaks Autism Treatment Network consortium." Looking at non-depressed (n=1183) and 'ever' depressed (n=89) parent or caregiver reports of offspring, researchers reported a few important details.

As per those non- and ever-depressed figures, the experience of depression or at least some of the symptoms of depression is not uncommon in paediatric autism. Drilling down into further detail, the authors reported that around a fifth of teens/young adults (13-17 years) were reported to have a history of depression. The added suggestion that "higher IQ, and Asperger disorder diagnosis" (authors words not mine) might be important correlates taps into other independent findings (see here).

And then something a little more new... "After controlling for age, IQ, and within-spectrum categorical diagnosis, the ever-depressed group exhibited significantly greater rates of seizure disorders... and gastrointestinal problems... and trend-level differences in aggression, somatic complaints, and social impairments. The groups did not differ in autism severity, repetitive behaviors, sleep problems, eating problems, self-injurious behavior, or current intervention use."

These are interesting findings despite the need for further replication and validation. That depression might also 'correlate' with somatic issues such as seizure disorders such as epilepsy or gut issues is something I'm particularly interested in. Outside of the idea that depression might not be entirely unexpected alongside the presentation of epilepsy for example (see here), the suggestion that bowel issues might also correlate in relation to autism, taps into some preliminary independent work previously covered on this blog (see here). I might also bring in some more general work looking at how labels such as depression have been noted to be over-represented when it comes to specific GI complaints such as irritable bowel syndrome (IBS) for example (see here) as further fodder for thought.

The nature of the relationship between autism, depression and something like bowel issues remains the stuff of speculation, particularly the question of what comes first. I might provide some ideas for future research directions with a view to the overlap with anxiety (see here) as a start. I could even suggest that further efforts might be needed to look into whether more external agents might play a role for some (see here) including those trillions of wee beasties that call us all home (see here). But this would only be speculation, and taking into account the plurality of autism (see here), science needs to do a lot more work on these important comorbidities, particularly given the heightened risk of adverse outcomes potentially linked to the experience of depression and how a relationship between autism and depression may even stretch into older age [2]...

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[1] Greenlee JL. et al. Medical and Behavioral Correlates of Depression History in Children and Adolescents With Autism Spectrum Disorder. Pediatrics. 2016 Feb;137 Suppl 2:S105-14.

[2] Wallace GL. et al. Aging and autism spectrum disorder: Evidence from the broad autism phenotype. Autism Res. 2016 Mar 11.

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Greenlee JL, Mosley AS, Shui AM, Veenstra-VanderWeele J, & Gotham KO (2016). Medical and Behavioral Correlates of Depression History in Children and Adolescents With Autism Spectrum Disorder. Pediatrics, 137 Suppl 2 PMID: 26908466

People commit crimes not their clinical labels

"Oregon Killer’s Mother Wrote of Troubled Son and Gun Rights" and "The Myth of the ‘Autistic Shooter’".

Those were just two of the headlines that I read recently about the tragedy that rocked the town of Roseburg in the United States and the inevitable attempts to understand such a senseless act.

Accepting that our thoughts and prayers should focus on the those murdered, and the long and painful journey that now faces families and loved ones (including that of the perpetrator's family), mention of the autism spectrum as 'potentially' being part and parcel of the killer's 'profile' is something that perhaps requires some science-based discussion. I appreciate that significant emotions come into such tragic stories as per previous instances and the question of 'why', but this is a blog about science and autism. I'm gonna stick to the available peer-reviewed literature specifically on the topic of autism and offending without hopefully sounding too cold nor too dispassionate.

I think it is worth going over a few things first for any newcomers straying across this post.

First, a few sentences about autism and/or the autism spectrum. Clinically, autism describes a developmental disorder that variably affects communication and social interactions (social affect) among other things. Alongside a heightened risk for various comorbidity - psychological and somatic - a diagnosis on the autism spectrum is both "profound and pervasive" in terms of impact on a person's life. For some that means a lifetime of round-the-clock care; for others, sometimes wrongly labelled as 'high-functioning', it can mean struggling with even mundane daily activities, not made any easier by societal attitudes and stereotypes and often accompanied by a lack of appropriate social and healthcare support. Although not wishing to paint too bleak a picture, the increased rates of suicide ideation (see here) and even requests for euthanasia (see here) for example, can represent the extremes of the struggles faced by people on the autism spectrum. I might also add that the 'lack of social and healthcare support' sentence previously mentioned similarly extends to quite a few families caring for people with autism too.

Next, although a diagnosis of autism does not provide immunity against offending behaviour, people with autism are far more likely to be a victim of crime over and above a perpetrator. Indeed, some of the traits associated with autism mean that many people on the spectrum are uniquely vulnerable to issues such as bullying (see here for the most recent research review), harassment or sometimes worse. Such traits can also lead to some people on the autism spectrum being drawn into criminality or committing criminal acts without fully comprehending the intentions of their accomplices and/or understanding the gravity of their actions. I hasten to add that such 'naivety' (if I can call it that) is likely multi-factorial in terms of the hows and whys; sometimes moderated by associated learning difficulties for example, and other times not.

OK. I hope that clears up a few things. The other point I want to make is that whilst the label of autism describes some of the behaviours of a person, I personally don't subscribe to the view that autism does (or should) define a person, in the same way that the labels of depression and anxiety or even schizophrenia don't define people. In this context, the important point is that 'people commit crimes not their clinical labels'. Keep that in mind as I continue.

Accepting that at the time of writing this post, we don't have all the details (or confirmation of of all the details) about whether indeed the killer "struggled with Asperger’s syndrome, an autism spectrum disorder" or not, there is some science on this topic in relation to such extreme offending behaviour.

Although making uncomfortable reading, I want to start with the paper by Clare Allely and colleagues [1] (open-access) which garnered quite a bit of media attention when it was first published back in 2014 on the basis of a suggestion that "a significant proportion of mass or serial killers may have had neurodevelopmental disorders such as autism spectrum disorder or head injury." Retrospectively looking at several accounts of mass or serial killers, the authors concluded that there was some evidence that "in at least some cases, neurodevelopmental problems such as ASD [autism spectrum disorder] or head injury may interact in a complex interplay with psychosocial factors to produce these very adverse outcomes." I can remember various reactions to this paper when it saw the light of day; quite a few rooted in the fear that sweeping generalisations would ensue and similar to the historical situation in schizophrenia, all autism would be generalised and equated with dangerousness.

As it turns out that didn't happen. Indeed, I actually thought the Allely paper made some important points in their review. They didn't, for example, say that every serial or mass killer 'had autism', indeed not even close: "we are able to say that probably more than 10% of serial/mass killers have ASD and a similar proportion have had a head injury." With the estimated rates of autism these days (1 in 46 according to some reports), one can perhaps see how that percentage might cover at least some of what would be expected in the general population anyway.

What Allely et al did observe is: (a) that "serial and mass killings are rare" and (b) that: "The gaps in our understanding about the actual mechanisms of development toward these most negative of outcomes are enormous." Further: "the great majority of those with ASD or head injury had also experienced psychosocial risk factors such as parental divorce, physical or sexual abuse, and major surgery during childhood." That last point might tie in with some of the details coming out of the Roseburg tragedy, although with the important provisos that (i) correlation is not necessarily the same as causation and that (ii) sweeping generalisation is usually the mother of all mistakes.

Continuing the theme of other factors/variables occurring alongside autism as also being potentially important to instances of offending behaviour are the findings reported by Newman & Ghaziuddin [2]. Surveying some of the scientific literature on the topic of violent crime specifically in relation to Asperger syndrome, the authors concluded that some 30% of cases were accompanied by "a definite psychiatric disorder" and a further 50% had a "probable psychiatric disorder at the time of committing the crime."

This research reiterates the idea that autism, some autism, offers little in the way of protection when it comes to risk of other psychopathology occurring alongside. Screening for such comorbidity should be much more of a priority than it currently is. Without hopefully shifting blame between labels - remember people commit crimes not their labels - there is a body of research emerging suggesting that issues such as psychosis for example, may show a complicated relationship with some autism. I've covered this topic a few times on this blog (see here and see here) particularly where the manifestation(s) of psychosis has led to a subsequent diagnosis on the autism spectrum. Psychosis by the way, is characterised by disrupted perception and/or interpretation of the world around. Although by no means a universal relationship, there is some evidence that particularly in first-episode psychosis, homicide rates may be heightened [3]. That all being said, I will also draw your attention to the systematic review from King & Murphy [4] on offending profiles with autism in mind which reported: "poor evidence of the presence of comorbid psychiatric diagnoses (except in mental health settings) amongst offenders with ASD."

Moving on, and the paper by Helverschou and colleagues [5] provides some further potentially important details about such offending profiles in individuals diagnosed with an ASD. So; "Unlike most others who commit criminal acts, the majority of the individuals with autism spectrum disorder in this study showed no evidence of substance abuse, had a close relationship to their victims and were willing to confess to the accused crime." Further: "in most cases, autism spectrum disorder characteristics, such as idiosyncratic comprehensions and obsessions appeared to be related to the motive for the offence."

Focusing specifically on substance abuse, this is something of a common thread in many discussions about offending profiles and psychiatry. In a recent post, I talked about some quite large-scale population research that suggested there may an intricate relationship between something like attention-deficit hyperactivity disorder (ADHD) and future risk of psychosis and/or schizophrenia. Specifically, discussions turned to how substance abuse may be one or several factors 'priming' ADHD for later psychopathology and onwards where substance abuse might fit in relation to violent crime [6] in this group. It is a complicated relationship and difficult to summarise in a few words, but the idea that substance abuse may intersect with psychiatry and violent behaviour is the key tenet.

Alongside substance abuse, I would also draw your attention to some more general science literature on various prescription medicines that have been associated with violent behaviour [7]. Moore et al surveyed the US FDA Adverse Event Reporting System (AERS) with a view to "any case report indicating homicide, homicidal ideation, physical assault, physical abuse or violence related symptoms." They found a few possible 'associations' which were reported in the mainstream media (see here) overlapping with some pharmacotherapy that might also be indicated for some aspects of autism. At the time of writing, we don't know the specific medical history of the Roseburg perpetrator nor whether illicit or prescription medication was a part of his recent clinical picture. We also don't know whether specific medicines were being withheld or any associated circumstances around compliance.

Finally, I'm going to carefully introduce the paper by O'Nions and colleagues [8] into the conversation, and some potentially pertinent discussions about a label called Pathological Demand Avoidance (PDA). PDA is an interesting diagnostic concept insofar as being described as a feature of the autism spectrum but at the time of writing, not actually being formally included in any of the standardised diagnostic texts. O'Nions et al report how most of their group with PDA met criteria for ASD yet demonstrated some important differences from more classical descriptions of autism: "this high scoring group was characterised by lack of co-operation, use of apparently manipulative behaviour, socially shocking behaviour, difficulties with other people, anxiety and sudden behavioural changes from loving to aggression." Without any further shifting of blame between labels intended (people, not labels) or indeed casting aspersions, further investigations are required on any longer-term 'correlates' of a diagnosis of PDA specifically with offending in mind. That such a diagnosis may also border on other psychopathology [9] including "anti-social traits approaching those seen in the conduct problems and callous-unemotional traits group" taps into the continuing theme of comorbidity covered a few paragraphs back.

There is other peer-reviewed literature on this topic but I'd like to think that the selected studies provide the best evidence that we have so far when it comes to what is known or suspected about offending behaviour overlapping with a label on the autism spectrum. Hopefully what you can see from the collected literature is that offending behaviour is complicated in instances where autism is mentioned; indeed, as complicated as it is when autism is not mentioned.

No-one will ever know exactly why the Roseburg killer did what he did and what were the precise circumstances around this heinous crime. It is likely however that lots of variables coincided including the ideas of notoriety and possibly a sort of 'contagion' combining with seemingly easy access to weapons. The research evidence so far on this topic tells us that any role played by a label on or off the autism spectrum is likely to be a tangled one and certainly not one working in any sort of isolation [10]. Subsequent sweeping generalisations therefore about all autism and 'dangerousness' are probably inaccurate and most certainly offer little in the way of usefulness or comfort for anyone: victims, their families or the wider autism community. Indeed perhaps only serving to wrongly stigmatise an already heavily stigmatised group as per other examples where clinical labels have been mentioned alongside murder.

What such a tragic event does however highlight is that there is a continued need for science to investigate the precipitating factors around their occurrence - biological, medical, familial, social, political - and where possible, offer evidence-based ways and means of intervening and potentially averting such extreme acts. Although of little comfort to those families and communities that have lost loved ones in such a manner, forensic analysis of the perpetrators (including those who were stopped) remains a primary tool in discerning clinical profiles and circumstances in such cases; mindful however of how sweeping generalisations can often do more harm than good [11] and also being careful not to feed any publicity that sometimes accompanies such cases.

To close, I leave you with a ray of light from the tragedy, and the story of Chris Mintz: "a father to a young boy with autism" hailed as hero.

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[1] Allely CS. et al. Neurodevelopmental and psychosocial risk factors in serial killers and mass murderers. Aggression and Violent Behavior. 2014; 19: 288-301.

[2] Newman SS. & Ghaziuddin M. Violent crime in Asperger syndrome: the role of psychiatric comorbidity. J Autism Dev Disord. 2008 Nov;38(10):1848-52.

[3] Nielssen O. & Large M. Rates of homicide during the first episode of psychosis and after treatment: a systematic review and meta-analysis. Schizophr Bull. 2010 Jul;36(4):702-12.

[4] King C. & Murphy GH. A systematic review of people with autism spectrum disorder and the criminal justice system. J Autism Dev Disord. 2014 Nov;44(11):2717-33.

[5] Helverschou SB. et al. Offending profiles of individuals with autism spectrum disorder: A study of all individuals with autism spectrum disorder examined by the forensic psychiatric service in Norway between 2000 and 2010. Autism. 2015 Oct;19(7):850-8.

[6] Fazel S. et al. Schizophrenia, substance abuse, and violent crime. JAMA. 2009 May 20;301(19):2016-23.

[7] Moore TJ. et al. Prescription Drugs Associated with Reports of Violence Towards Others. PLoS ONE 2010; 5(12): e15337.

[8] O'Nions E. et al. Identifying features of 'pathological demand avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO). Eur Child Adolesc Psychiatry. 2015 Jul 30.

[9] O'Nions E. et al. Pathological demand avoidance: exploring the behavioural profile. Autism. 2014 Jul;18(5):538-44.

[10] Søndenaa E. et al. Violence and sexual offending behavior in people with autism spectrum disorder who have undergone a psychiatric forensic examination. Psychol Rep. 2014 Aug;115(1):32-43.

[11] Metzl JM. & MacLeish KT. Mental Illness, Mass Shootings, and the Politics of American Firearms. American Journal of Public Health. 2015; 105: 240-249.

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Newman, S., & Ghaziuddin, M. (2008). Violent Crime in Asperger Syndrome: The Role of Psychiatric Comorbidity Journal of Autism and Developmental Disorders, 38 (10), 1848-1852 DOI: 10.1007/s10803-008-0580-8




King C, & Murphy GH (2014). A systematic review of people with autism spectrum disorder and the criminal justice system. Journal of autism and developmental disorders, 44 (11), 2717-33 PMID: 24577785

Patients with psychiatric disorders who request euthanasia

I'll freely admit that the paper by Lieve Thienpont and colleagues [1] (open-access available here) made me feel rather uncomfortable. With the objective of identifying "patterns in euthanasia requests and practices relating to psychiatric patients", authors detailed the experiences of 100 Belgian patients requesting euthanasia - 'the act of deliberately ending a person's life to relieve suffering' - through a retrospective case note review. Euthanasia is legal in Belgium under certain circumstances. Within their cohort, a fifth of cases were diagnosed (or eventually diagnosed) as being on the autism spectrum; the vast majority with Asperger syndrome (n=19).

Their results suggested that: "Depression and personality disorders are the most common diagnoses in psychiatric patients requesting euthanasia." Further, that Asperger syndrome represented "a neglected disease burden" when it came to the idea that "unbearable psychological suffering" might lie behind such requests.

I don't want to get into any debates about the rights or wrongs of euthanaisa in this post. Viewpoints are varied on this point and I'm not seeking conflict. The suggestion that 'psychological suffering' might rank up alongside 'physical suffering' when it comes to entertaining the idea of euthanasia is an important issue raised in this paper. One only needs to look at the very stark connection between psychatric disorder and suicide [2] to see that psychological suffering often takes a severe toll on a person. Indeed, when following up their cohort, Thienpont et al note that "43 of the 100 patients had died." The majority had eventually opted for and been granted euthanasia but: "Six patients had committed suicide."

The inclusion of a diagnosis of Asperger syndrome in the cohort followed by Thienpont et al represents something of an additional dimension to this issue and raises a number of ethical issues requiring much further discussion. Whilst it is already known that autism/Asperger syndrome seems to elevate the risk for issues such as depression, particularly bipolar disorder, appearing comorbid (see here) and that suicide ideation and contemplation might also not be uncommon in cases (see here), the question of what can be done to mitigate such issues must come to the forefront.

Appreciating that views are varied on autism and what it means to people - those diagnosed and those family, friends and professionals around them - and that individuals have a right to determine their own path, I would perhaps suggest that the Thienpont paper adds to a growing body of literature suggesting that the alleviation of symptoms must rank as a research priority for those who wish it and where effective (research-based) interventions can be isolated. Going back to the paper by Copeland and colleagues [3] (discussed in a previous post) suggesting that the reduction of 'childhood psychiatric distress' might have important knock-on effects for adult outcomes, one gets a flavour for where efforts might be initially directed. That also the idea that additional psychopathology accompanying autism might also be positively affected in those cases of 'optimal outcome' as per the findings from Orinstein et al [4] adds to the potential research agenda (see here for some recent discussions on this topic).

I know the idea of modifying the presentation of autism is not palatable for everyone, and that society also needs to play a role in how people with autism / autistic people are welcomed and supported. When however a label such as autism potentially leads, or is contributory, to a path whereby a person considers ending their own life by suicide or euthanasia, I find it difficult to say that we should just stand back and watch from the sidelines.

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[1] Thienpont L. et al. Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ Open. 2015 Jul 27;5(7):e007454.

[2] Wasserman D. et al. The European Psychiatric Association (EPA) guidance on suicide treatment and prevention. Neuropsychopharmacol Hung. 2012 Jun;14(2):113-36.

[3] Copeland WE. et al. Adult Functional Outcomes of Common Childhood Psychiatric Problems: A Prospective, Longitudinal Study. JAMA Psychiatry. 2015. July 15.

[4] Orinstein A. et al. Psychiatric Symptoms in Youth with a History of Autism and Optimal Outcome. J Autism Dev Disord. 2015 Jul 9.

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Thienpont L, Verhofstadt M, Van Loon T, Distelmans W, Audenaert K, & De Deyn PP (2015). Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study. BMJ open, 5 (7) PMID: 26216150

Optimal outcome and the autism spectrum: implications for the risk of psychiatric comorbidity?

"The minority of the AS [Asperger syndrome] group who no longer met criteria for a full diagnosis of an autism spectrum disorder were usually free of current psychiatric comorbidity."

That was one of the details reported by I. Carina Gillberg and colleagues [1] continuing their longitudinal look at a group of males diagnosed with Asperger syndrome and participants' experiences as a function of their presented symptoms and risk of other comorbidity.

Titled 'Boys with Asperger Syndrome Grow Up', this latest research foray examined "comorbid psychiatric and neurodevelopmental disorders in fifty adult males (mean age 30 years) with Asperger syndrome (AS) diagnosed in childhood and followed up prospectively for almost two decades." They concluded that outside of a small group of participants who seemed to achieve something like 'optimal outcome' with their autistic symptoms in mind, many of their cohort still fulfilling the diagnostic criteria for AS "had ongoing comorbidity (most commonly either ADHD [attention-deficit hyperactivity disorder] or depression or both)."

Whilst realising that comorbidity such as ADHD (see here) and various types of depression (see here) seem to be over-represented when it comes to the autism spectrum, I was particularly interested in the data about those presenting with optimal outcome (OO). Just in case you didn't click on the link featured in that previous reference to OO, this is a concept whereby some who were previously diagnosed with an autism spectrum disorder (ASD) no longer reach the diagnostic threshold for the label at a later date. This same authorship group have previously documented this issue in other studies (see here). The idea that 'some' autism might not be lifelong and immutable has seemingly not sat well with quite a few people with an interest in autism, despite the fact that quite a bit of peer-reviewed science has documented this phenomenon. I can understand the hesitancy about overturning dogma and the implications for the very wide spectrum called autism or even the autisms, but peer-reviewed science is peer-reviewed science and that should be central to driving knowledge (evidence-based knowledge) about autism.

The preliminary suggestion from Gillberg et al that where OO is present so this may also have a positive impact on the risk of other psychiatric-based comorbidity appearing is an interesting one. Recently I came across the data coming from Orinstein and colleagues [2] who likewise suggested that in children and young adults categorised at being optimal outcomers: "Psychopathology in the OO group abated over time as did their autism, and decreased more than in HFA [high-functioning autism]." The idea being that as autistic symptoms diminish, so this might also have a positive impact on other psychiatric comorbidity appearing. This surprised even me, but potentially opens up a whole new research world added to data from other related areas of investigation [3] (see here for my take on this study).

Further investigations are of course implied from such studies. That the autisms might include huge variations in developmental trajectory is not a new idea (see here). That some of those trajectories might be malleable to some extent is also not necessarily new news (see here). I do also wonder however what the possible impact of optimal outcome might be on other, more somatic diagnoses, as per the idea that various medical comorbidity might also be over-represented alongside autism (see here). Accepting that science still needs to clarify the whos and hows around OO and the possible mechanisms of effect, I for one, will be watching closely how this research area develops.

And finally, I'll draw your attention to the findings reported by Chiang and colleagues [4] and the idea that: "Early comorbid psychopathologies may further impair later social adjustment in youths with ASD." Need I say more?

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[1] Gillberg IC. et al. Boys with Asperger Syndrome Grow Up: Psychiatric and Neurodevelopmental Disorders 20 Years After Initial Diagnosis. J Autism Dev Disord. 2015 Jul 26.

[2] Orinstein A. et al. Psychiatric Symptoms in Youth with a History of Autism and Optimal Outcome. J Autism Dev Disord. 2015 Jul 9.

[3] Copeland WE. et al. Adult Functional Outcomes of Common Childhood Psychiatric Problems: A Prospective, Longitudinal Study. JAMA Psychiatry. 2015 Jul 15.

[4] Chiang H-L. et al. Comorbid psychiatric conditions as mediators to predict later social adjustment in youths with autism spectrum disorder. J Child Psychol. Psychiatry. 2015. August 6.

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Gillberg IC, Helles A, Billstedt E, & Gillberg C (2015). Boys with Asperger Syndrome Grow Up: Psychiatric and Neurodevelopmental Disorders 20 Years After Initial Diagnosis. Journal of autism and developmental disorders PMID: 26210519