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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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"the friendships and social experiences of autistic girls are similar to those of neurotypical girls"

The quote heading this post - "the friendships and social experiences of autistic girls are similar to those of neurotypical girls" - comes from the findings reported by Felicity Sedgewick and colleagues [1] (open-access available here) continuing a growing research theme looking at the presentation of autism across the sexes/genders. The results however perhaps challenge the idea that "being autistic ‘overrides’ being female in some way."

OK, first things first, by mentioning the word 'neurotypical' the authors refer to a not-autistic control group. As I've said on many, many occasions, the word 'neurotypical' from a research/clinical point of view is however meaningless (see here): there is no way for a living brain, with all its complex structures, connections and functions, some of which are changing second to second, to ever be described as 'typical'. And autism research in particular really shouldn't be using such a misnomer, no matter how [social media] fashionable it might seem.

Rant over. Despite using the term, the Sedgewick paper covers an important real-world part of the whole 'gender differences in autism' area looking at "gender differences in the friendships and conflict experiences of autistic girls and boys relative to their neurotypical [non-autistic] peers." Over 100 adolescents (aged 11-18 years) were included for study; about half diagnosed with autism with an "independent clinical diagnosis of an autism spectrum condition." Said autism diagnoses were also complemented by assessment via the gold-standard ADOS which actually revealed that: "Two boys and four girls failed to meet the ADOS-2 threshold (score = 7) for autism." Data from these children were still included in the study given the "pre-existing clinical diagnosis" and other supporting information. I'm wondering however if perhaps some of these children were examples that an autism diagnosis (or reaching the cut-off points on one of the gold standard autism assessment instruments) is not necessarily for life (see here)? Further, all participants "completed the Friendship Qualities Scale, the Revised Peer Experiences Questionnaire and were interviewed about their friendships" and results were analysed...

Results: "Autistic and non-autistic girls’ conflict and friendships were more like each other than autistic and non-autistic boys, and vice versa." The authors frame this in the context that their findings "provide compelling support for the possibility that gender may be more important than diagnosis in determining young autistic people’s social experiences." That's not to say that there weren't some important group differences in relation to social challenges, conflict and conflict resolution - "autistic girls described an ‘all-or-nothing’ approach, either taking sole responsibility for what had happened... or ending the friendship entirely, seeing the other person as the wrong-doer..., or feeling it could not be resolved" - just that there was more to align girls than to divide them when it came to comparisons with non-autistic peers.

Authors also report results from their interviews with adolescents which again revealed that gender over a diagnosis of autism seemed to a key aspect. So: "Having a few good friends was key, with all girls talking about having a small number of close friends that they considered to be ‘best’ friends. These close friends were those who they spent the most time with and talked to most." Also: "Both autistic and neurotypical girls emphasised that friends supported them." And finally: "Both autistic and neurotypical girls alluded to wanting to fit in, but in different ways." It should also be noted that Sedgewick et al mention how 'camouflaging' (a term being increasingly used in autism circles) is not a specific strategy reserved for autism: "Few girls reporting having boyfriends, but most said people dated to fit in with the popular crowd. These behaviours could be seen as a form of ‘camouflaging’, as teenagers described seeking peer acceptance, even if they were not personally motivated to date."

As to the boys of this particular cohort, well again, there didn't appear to be any really prominent stand-out separation points between autism and not-autism. As the authors report: "autistic and non-autistic adolescent boys reported their friendship and conflict experiences as highly similar – activity-focused, practically supportive friendships combined with a laissez-faire attitude to conflict. The exception to this pattern was that neurotypical boys described more intimate friendship experiences than their autistic male counterparts."

Cumulatively the Sedgewick findings reinforce the idea that there may be some subtle but important differences between boys and girls, women and men diagnosed with autism (see here). In this light, the suggestion that "autistic girls (and possibly women) need different strategies and supports to understand and effectively navigate the social expectations placed upon them" is correct when compared to males diagnosed with autism. The results suggesting however, little significant differences in friendships and social experiences between autistic girls and non-autistic girls (and autistic boys and non-autistic boys) kinda grates against some of the narratives that have emerged in recent years. It implies that rather than viewing someone as an 'autistic girl' one should perhaps first focus on that person as a girl when it comes to social experiences and friendships rather than subscribing to the idea that autism is wholly 'behind' any issues as some 'identity' discussions have intimated. The findings also imply that camouflaging and masking are not necessarily exclusive features of autism but, perhaps in some contexts, are rather more representative of a general effect specifically across gender.

I would like to see a lot more research done in this area. I'd like to see more longitudinal work done looking at friendships and social experiences into adulthood with autism in mind, where other environments replace the school playground (including the online and social media environments). I'd like to know about how friendships develop, persist or 'fall to one side' and whether other 'comorbidity' (see here), that more likely than not will 'follow' a diagnosis of autism (see here), play any role in such social experiences. I'd also like to see further work on societal inclusion (see here) in the context of the Sedgewick research too. There is a scheme of work to do.

And let us also not forget that learning the intricacies of things like friendships and social experiences or challenges such as conflict are also influenced by other important variables, such as a role for siblings [2] (for better or for worse)...

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[1] Sedgewick F. et al. 'It's different for girls': Gender differences in the friendships and conflict of autistic and neurotypical adolescents. Autism. 2018 Oct 3:1362361318794930.

[2] Ben-Itzchak E. et al. Having Siblings is Associated with Better Social Functioning in Autism Spectrum Disorder. J Abnorm Child Psychol. 2018 Oct 3.

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

Credit: Disability Scoop 23 August 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Onward:

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

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

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

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

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

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

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

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

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

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

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

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

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"and some will be largely free from symptoms of the disorder by adulthood"

The quote heading this post - "and some will be largely free from symptoms of the disorder by adulthood"- comes from a seminar article published in The Lancet by Catherine Lord and colleagues [1] on the topic of autism spectrum disorder (ASD). It follows a series of review and seminar articles published in this journal down the years on the topic of autism; covering various different angles, viewpoints and opinions.

I decided to work this quote up into a short blog entry because there are a couple of important implications stemming from such sentiments that coincide with other independent research findings. Not least are the ideas that: (a) for some, autism is not a life-long condition/state/diagnosis/disorder (see here) and (b) far from being static, the presentation of autism can and does change for whatever reason(s) (see here).

There are some caveats to those 'ideas' I've just described. Not least is the 'sweeping generalisation' caution that is required when it comes to autism, and it's very, very heterogeneous nature. Autism for most/many people is a life-long condition. For many people, particularly those who are profoundly autistic, symptoms/traits/characteristics are always going to be present to a significant degree and affect their (and others) lives every single day. This is a statement of fact.

But the sentiments expressed by Lord et al recognise that even where childhood autistic symptom presentation were often severe and 'disabling', that does not mean that this will always be so for some people as they age and mature. It draws attention to the idea that whether through the process of maturation, results of intervention or other increasingly used terms like 'masking', the presentation of autistic signs and symptoms can and do change both in frequency and intensity. This idea of 'fluidity' in the presentation of autism is something that is beginning to percolate through the peer-reviewed domain. Whilst there is probably going to be a sizable contribution from issues like masking autistic signs and symptoms, there is also a realisation that people change and adapt whether in behaviour or cognitive style depending on issues such as their environment.

This line of thinking has implications. It has implications for the use of the term 'autistic identity' where people see the label/diagnosis as an essential part of who they are; much in the same way that discussions about autism and sexuality seem to be converging in a similar manner. It has implications for the provision of services, particularly those 'bean counter' discussions about autism costs over a lifetime (see here) and eligibility criteria for an increasingly finite pot of money and resources. It also has implications for the idea that autism rarely exists in some sort of diagnostic vacuum (see here), and an intriguing question about whether, as overtly presented autism signs and symptoms wane for some, other important symptoms/conditions instead become more prominent. Y'know, like anxiety (see here) and/or depression (see here) or others (see here and see here)? And I'll again throw in some research on how 'being largely free from symptoms' might also impact on other important issues related to autism (see here) mentioned in a post not-so-long-ago on the topic of depression and autism (see here).

Oh, and there's more longitudinal investigation from this research group [2] too, including the quote: "Findings suggest that some older adolescents and adults with ASD may not exhibit the same difficulties observed in young children with ASD". Discuss.

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[1] Lord C. et al. Autism spectrum disorder. Lancet. 2018 Aug 2. pii: S0140-6736(18)31129-2.

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

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"Risk markers for suicidality" and autism: masking or insight as a feature?

The findings reported by Sarah Cassidy and colleagues [1] continue an important research theme in relation to risk of suicide and autism (see here). The value-added bit to their research on this occasion was the observation that "there are unique factors associated with autism and autistic traits that increase risk of suicidality" and that some of these factors may be potentially modifiable.

Members of this research team have some important research history [2] when it comes to looking at suicidality and autism. This time around they report the results of an on-line survey completed by over 160 adults on the autism spectrum and a similar number of not-autistic controls. Prior to the delivery of this survey we are told that a steering group of autistic adults / adults with autism helped to target the research towards what factors might be relevant, including: "non-suicidal self-injury, mental health problems, unmet support needs, employment, satisfaction with living arrangements, self-reported autistic traits (AQ), delay in ASC [autism spectrum condition] diagnosis, and ‘camouflaging’ ASC."

"Results are consistent with previous findings that autistic adults are at significantly increased risk of suicidality compared to the general population." As worrying as that finding is, the observation that suicidality is elevated in relation to autism is nothing new. Indeed, as far back as the late 1990s, there were rumblings of 'under-reporting' of suicidality in relation to autism and related developmental disorders.

Continuing: Various psychiatric labels/conditions were identified as being present in those with autism at a greater frequency than controls. This included various 'comorbidities' previously discussed with autism in mind (see here and see here). Several of those conditions have also been identified as key risk variables when it comes to suicidality. I was also particularly drawn to the rate of personality disorder (PD) identified in this sample: 18% in females with autism compared with 3-4% in control females for example. This is interesting in light of other research explored on this blog (see here) and again, some evidence of an enhanced risk for suicide alongside such a condition. And mention of 'Myalgic encephalopathy' I assume akin to Myalgic Encephalomyelitis (ME), another mainstay topic of this blog, perhaps taps into an area that requires lots more study on the possible overlap between autism and ME/CFS (chronic fatigue syndrome) (see here). Indeed, in future posts I'll be [again] covering research on the issue of suicide in relation to ME/CFS [3] that could also be relevant to autism and ME/CFS when co-occurring, reiterating that ME/CFS is not a psychiatric or mental health diagnosis...

Onward: "These results suggest that autism diagnosis and autistic traits explain significant additional variance in suicidality beyond a range of known risk factors, and are therefore independent risk markers for suicidality." So 'autistic traits as being independent risk markers for suicidality'. This is not the first time that such peer-reviewed sentiments have been reported (see here) and probably won't be the last. The logical implications from such a finding is that a reduction in autistic traits may well impact on suicidality. This is not a sentiment that some people will find palatable, but that's the logical implication stemming from such a finding.

Finally, quite a lot has been made (on social media at least) about the issue of camouflaging (masking) and a possible connection to suicidality in relation to autism. Masking reflects the idea that some on the autism spectrum actively camouflage signs and symptoms "in order to cope in social situations." The authors report that: "Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC [autism spectrum conditions]." I'm however slightly cautious of this at the moment when wearing my objective science hat. One has to remember that, at present, there aren't many (any?) well validated tools for objectively assessing masking in relation to autism. In this study, Cassidy and colleagues mention how: "A brief set of four questions were designed to quantify tendency to camouflage." The answers to such a small set of open questions are subject to considerable bias (particularly if the individual is active on social media and perhaps privy to all the discussions around masking on there). One also cannot discount the idea that having the fundamental ability of 'insight' to be able to mask/camouflage may itself be a risk factor for suicidality. I say this on the basis of other research talking about how a higher cognitive capacity in relation to autism seems to increase the risk of vulnerability to depression (see here) as a function of the link between depression and suicidality. Simple answers to complex questions are likely to be few and far between.

So, where next? Well, being careful not to fall into any sweeping generalisations or psychobabble explanations of suicide risk in relation to autism, it strikes me that there are a few things to think about in terms of harm reduction. Screening for something like depression and/or non-suicidal self-injury (NSSI) should be much more widespread in the context of autism. Obviously, such behaviours / diagnoses are not just 'locked in' over a lifetime, so such screening needs to be done quite regularly. I would also mention that other comorbidity seemingly over-represented when it comes to autism might also exert an important effect too (see here). Tackling 'unmet support needs' also looks to be important. I'm slightly less sure of how to go about affecting this, given that the availability of many services are seemingly at the whim of finances and resources, which continue to be in short supply in these austere times (see here). But where there's a will, there's a way. I'll also reiterate that if certain autistic traits are themselves independent risk factors for suicidality, it surely follows that moves to reduce such behaviours would impact on suicidality. Indeed, in this context, the active process of masking could be seen as a double-edged sword when it comes to suicidality and autism.

And I'm also minded to bring in some important literature where autism is talked about in the context of euthanasia and assisted suicide (see here) and what lessons could be learned from some of the accounts detailed there. It's another difficult topic to discuss but something that is becoming increasingly relevant (see here).

As always, if you need someone to talk to (or text), there are organisations available. Please use them.

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[1] Cassidy S. et al. Risk markers for suicidality in autistic adults. Mol Autism. 2018 Jul 31;9:42.

[2] Cassidy S. et al. Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study. Lancet Psychiatry. 2014 Jul;1(2):142-7.

[3] Devendorf AR. et al. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2018 Jul 1:1359105318785450.

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