Tuesday, 21 August 2018

"Prenatal Tdap vaccination was not associated with an increased ASD risk"

The findings published by Tracy Becerra-Culqui and colleagues [1] reporting on a lack of any significant *association* between exposure to tetanus, diphtheria, acellular pertussis (Tdap) vaccination during pregnancy and subsequent risk of autism spectrum disorder (ASD) provide the blogging fodder today.

Such results, based on a cohort size of 80,000+ children with continuous enrolment at Kaiser Permanente Southern California (KPSC) hospitals in the United States (US), should set minds at ease when it comes to the safety of this important vaccine when used during pregnancy. Even more so when one realises that pregnancy infection and vaccination analysis in the context of autism is a bit of strong point when it comes to Kaiser Permanente data (see here for example).

Tdap vaccination used during pregnancy, according to the US CDC, is an important tool specifically in the fight against pertussis, also known as whooping cough; so named as a result of the characteristic 'whoop' that occurs during the illness. The immunity provided by vaccination to a pregnant mum is able to also cover the important period after birth before an infant is old enough to be themselves vaccinated against the disease. The data on the effectiveness of pregnancy Tdap vaccination is encouraging, insofar as reducing the risk of infant whooping cough illness prior to them receiving their own vaccination.

As the authors point out (and a search of PubMed confirms), at the current time there doesn't previously appear to have been any peer-reviewed research suggestion that pregnancy use of Tdap vaccination raises the risk of offspring autism. The vaccine has also been 'cleared' in relation to "risk of small for gestational age, preterm delivery, or low birth weight in infants"; factors which have been *linked* to offspring autism risk previously (see here for example) alongside various other developmental outcomes on more than one occasion. But before this study "longer-term outcomes such as the risk of ASD, an outcome of significant public interest" had not been specifically looked at or mentioned in the context of Tdap.

The results of the Becerra-Culqui study have been summarised in an editorial in an affiliated outlet [2] to the journal where published and have also featured in other news sites too (see here). The long-and-short of it was that the rate of offspring autism was not significantly different when mum received the Tdap vaccine during pregnancy compared with mums who didn't. The autism incidence rate "was 3.78 per 1000 person years in the Tdap exposed and 4.05 per 1000 person years in the unexposed group." Variables like year of birth and parity also didn't seem to alter the results either.

But there were some issues to consider in the study design that were also highlighted by the authors. So for example: "There was an average difference of 6 months in follow-up time between both groups (unvaccinated, mean: 4.44 years [SD: 1.18]; vaccinated, mean: 3.85 years [SD: 1.29])" which meant that the study could have 'missed' some later diagnosed cases of autism, particularly in the vaccinated group. Indeed authors conclude: "we likely did not capture some children with ASD born in later study years considering that some children with milder ASD would not be diagnosed until they reach school age." Accepting that the description of 'milder ASD' is not a technical term, it's a shame that a more uniform follow-up period was not built into the study design. Particularly when there is data indicating that: "The median age of earliest known ASD diagnosis was 52 months" [3] in the United States; a figure that has not varied significantly over the past few years [4] and a median age of diagnosis that is not so dissimilar from one also reported here in Blighty (see here). And given that Becerra-Culqui has also previously published on the 'timing of autism spectrum disorder diagnosis' [5] so perhaps authors should have been aware of the literature on 'what age autism is typically diagnosed at' and adjusted accordingly.

What's more to say? Well, not much more really. Pregnancy Tdap vaccination appears to be safe based on such population data analysis and bearing in mind the follow-up caveat just discussed. Given the important protection the vaccine affords both to mums-to-be and their offspring against a pretty awful disease such as whooping cough, physicians can confidently recommend it. By saying this, I don't want to play down those follow-up differences nor the possibility of rare side-effects occurring for certain people (see here). But increasing offspring autism risk when such a vaccine is used during pregnancy does not seem to one of them...

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[1] Becerra-Culqui TA. et al. Prenatal Tetanus, Diphtheria, Acellular Pertussis Vaccination and Autism Spectrum Disorder. Pediatrics. 2018. Aug 13.

[2] Jenco M. Study: Prenatal Tdap not linked to autism. AAP News. 2018. Aug 13.

[3] Baio J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. 2018 Apr 27;67(6):1-23.

[4] Wingate M. et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveill Summ. 2014 Mar 28;63(2):1-21.

[5] Becerra-Culqui TA. et al. Parental First Concerns and Timing of Autism Spectrum Disorder Diagnosis. J Autism Dev Disord. 2018 May 12.

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Monday, 20 August 2018

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

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

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

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

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

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

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

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

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Saturday, 18 August 2018

Robot-mediated intervention and autism: fun but is it genersalisable?

For any Sci-Fi fan like me, mention of the word 'robot' conjures up various iconic images. Outside of the obvious, you have lovable robots like Twiki from the 1980s film/series that was Buck Rogers in the 25th Century. You also have the not-so-lovable robots like the Cylons from the original (and best) film/series that was Battlestar Galactica or even the spider robots designed (on screen) by a member of Kiss (yep, you heard me right). There are lots of examples.

These days the early dreams that robots might become an integral part of modern living have kinda come true albeit typically without the homicidal intent that their portrayal almost always seemed to imply. These days robots are our friends and helpers and are seemingly present in many areas of our modern infrastructure...

Set in this context the paper by Clare Huijnen and colleagues [1] provides a welcome analysis of the "roles, strengths and challenges of robot-mediated interventions using robot KASPAR [Kinesics and Synchronisation in Personal Assistant Robotics]  for children with autism spectrum disorder (ASD)." Authors concluded that there are some strengths to the application of robots to intervention with autism in mind, but also a few 'be careful' issues too...

Just in case you might not know, KASPAR is a social robot designed to "act as a social companion" to improve quality of life for children on the autism spectrum [2]. He/she/it is a little jarring to initially see (Leatherface sprung to mind) but works on the premise that as a robot he's 'safe and predictable' and because of that predictability, he might provide a good opportunity to help children on the spectrum learn certain skills, particularly around social interaction and communication. Noble sentiments.

Huijnen and colleagues decided to ask various care and education professionals - presumably with an interest in autism - about their views on KASPAR. Specifically: what role he/she/it might play, alongside the strengths and potential challenges around the use of such technology. The results were interesting insofar as positives like "personalisation possibilities, its playfulness... its neutral expression,... and repetitive application of actions." There's potentially lots that a robot could do that might be useful for some children, particularly children who crave predictability.

But just as interesting and important were the down-sides to such robot use, and in particular: "difficulties with generalisation or transfer and finally potential dependence on KASPAR." In other words, we're not yet living in the 'I, Robot' world where autonomous robots walk among us, and so one has to be quite careful that children aren't just being 'trained' to interact with KASPAR or similar robots rather than real people.

I've watched the emerging 'robots for autism' scene play out in the peer-reviewed science domain. I've watched various groups proudly showcase their technology and the promises that it holds. It's great to see this embracing of tech in many areas of autism research and practice but it has, I have to admit, always left me with niggling questions and doubts. Questions/doubts about whether this is just 'cosmetic' research or whether there is real potential for such technology...

I am particularly concerned that using robot-mediated intervention in the context of autism does one thing and one thing only: it 'teaches' children to interact with a robot. It provides a false reality that, whilst initially, might produce some gains for some children, does not in the longer-term prepare children for the very complicated social world. Interacting with a robot is not the same as interacting with children in a school playground or later, interacting with people in the workplace and beyond. Interacting with a robot is not the same as sitting in a job interview or interacting with the human face(s) of our very complicated social benefits systems to ensure suitable allowances are (rightfully) provided. Interacting with a robot is, well, interacting with a robot.

I'm not totally poo-pooing this work. There may yet be potential from such robot interactions that may provide transferable skills. At the moment however, we have little to no scientific data to backup the idea that robot-mediated intervention is anything more than a fun addition to the learning experience over some long-term meaningful teaching tool. Certainly, we have nothing to suggest that social interactive skills for example, are going to be significantly improved in the longer-term by sitting down and interacting with a robot.

To close, kids, don't be swayed by your robot companions...

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[1] Huijnen CAGJ. et al. Roles, Strengths and Challenges of Using Robots in Interventions for Children with Autism Spectrum Disorder (ASD). J Autism Dev Disord. 2018. July 17.

[2] Huijnen CAGJ. et al.  How to Implement Robots in Interventions for Children with Autism? A Co-creation Study Involving People with Autism, Parents and Professionals. J Autism Dev Disord.  2017;47(10):3079-3096.

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Friday, 17 August 2018

Even more on wandering and autism

I don't know if it's just me being more attentive but I seem to be more regularly seeing media reports of children and adults diagnosed with autism or autism spectrum disorder (ASD) wandering from their family/caregiver home or other place. Some of these media reports end happily insofar as the person being found safe and unharmed to then be reunited with their loved ones; on occasion, using some important previously learned survival skills. Other reports however, don't have such a happy ending...

The paper by Laura McLaughlin and colleagues [1] brings the topic of wandering (elopement) back into research view, observing that in their cohort of nearly 1500 parents talking about their children diagnosed with an ASD: "22.4% of the children wandered from their home or yard and 24.6% from a public place more than monthly." Such research continues a theme down the years illustrating how wandering is an important issue when it comes to autism (see here) and how for some, wandering can lead to a very, very final outcome (see here).

Researchers distributed their anonymous on-line questionnaire about various aspects related to wandering through several autism-related organisations, encouraging parents of children diagnosed with autism/ASD to respond. This wasn't your typical 'does your child wander?' questionnaire, but instead also incorporated several related items such as "the use of electronic tracking devices,... use of restraints and/or seclusion to prevent wandering at school, and receipt of guidance about wandering."

About a quarter of parents said their child wanders (and wanders quite routinely) and the effects of such behaviour seemed to be quite wide-ranging. Not only did wandering reflect a worry for many parents - "48.6% and 58.7% of parents were moderately/very worried about their child wandering from home or yard or a public place" - but almost three-quarters of parents reported that wandering concerns affected "decisions to let their child spend time with friends or family in their absence." With such sentiments being expressed, it's not difficult to see why some parents with children with autism have to announce 'why I can never die' (see here). Perhaps also surprisingly, McLaughlin et al reported that only a third of parents in their cohort "had previously received any counseling about wandering."

I still maintain that wandering represents one of the most important 'issues' linked to autism (see here). Lots more resources need to be dedicated to the hows-and-whys of such behaviour (see here) and what can be done to reduce risks all round. I also think more needs to be done to talk about wandering in the context of autism and provide parents/caregivers with the information and tools ('best available evidence') about wandering. Given also the seemingly important relationship between wandering and water safety in particular (see here), I'm minded to again vocalise the (preferential) need to teach water and swimming skills as and when a child is diagnosed...

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[1] McLaughlin L. et al. Wandering by Children with Autism Spectrum Disorder: Key Clinical Factors and the Role of Schools and Pediatricians. J Dev Behav Pediatr. 2018 Jul 6.

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Thursday, 16 August 2018

"aggressive behaviour is not a choice for children with autism": a legal decision with implications...

The quote heading this post - "aggressive behaviour is not a choice for children with autism" - reflects a legal ruling rather than a piece of peer-reviewed research that more typically appears on this blog. The ruling, which was reported in several media outlets (see here and see here), concerns an appeal over "a 13-year-old boy with special educational needs who had been excluded from school because of aggressive behaviour that was linked to his autism."

The details of the case concern various incidents where the boy - referred to as 'L' - struck a teaching assistant with a ruler as well as pulling her hair and punching her. As a result, the school gave L a one-and-a-half day exclusion. The exclusion was challenged on the basis that L was being denied an education as a result, in contravention of his human rights. The judge agreed and deemed the exclusion discriminatory on the basis that the presentation of such aggression was 'not a choice' but instead his "behaviour in school is a manifestation of the very condition which calls for special educational provision to be made." The National Autistic Society (NAS) here in Blighty was involved in bringing this appeal and have highlighted what it means: "all schools must make sure they have made appropriate adjustments for autistic children, or those with other disabilities, before they can resort to exclusion."

Of course this is all good news for children on the autism spectrum and their parents. It stresses that school exclusion should always be a tool of last resort as enshrined in law. It means that such 'challenging behaviours' should always be investigated as a 'sign of unmet need' and appropriate provision put in place to 'work through and manage' rather than exclude as a first reaction. This is really important and will influence many, many futures; hopefully also reversing a worrying trend (see here). It also means that schools excluding pupils or trying to exclude pupils perhaps on the basis of "their results not counting against the school" or similar sentiments, have been given notice...

But there is another side to this coin, and one that may also have equally important long-term repercussions for autism and the autism spectrum: aggression or aggressive behaviour is now inextricably *linked* to autism. And the removal of the word 'choice' from such 'tendency to physical abuse' behaviour - "through no fault of their own... akin to a spasmodic reflex" - starts to place such actions and behaviours in law in a similar position to that of various other developmental and psychiatric labels. 'Vulnerability' it seems, continues to retain it's relevance to autism (see here).

Not to carry on with casting a dark cloud over such a ruling, there is another group of people often forgotten in such cases for whom such a judgement will also likely have an important effect: teachers and teaching assistants who are often working at the 'sharp end'. Indeed, in one of the news reports on this case, there are some important points made by a union representative: "school staff members are attacked at work on a daily basis - from verbal abuse, to being spat at, kicked and punched. But they love their jobs, love the kids and want to carry on doing their best for the children. They understand these pupils can lash out and violent incidents can occur. All they ask is their school backs them up when it does happen - and takes the common sense steps needed to protect them." Such a ruling is unlikely to aid in the recruitment and retention of teaching and support staff who, just as anyone else in any other profession, also have enshrined rights at work when it comes to their health, safety and wellbeing. And without an appropriate intake of such often under-paid, under-appreciated staff, the education system, including that relevant to special educational needs, can only be put under even more stress and strain coupled to the current funding issues. A vicious cycle continues and is only likely to accelerate (see here).

Further research aplenty [1] is required on this important topic. Research on how to make school a more welcoming place for all is the primary objective and already implied. Every child deserves a decent education, and school should also be a place where happy memories are made and remembered for a lifetime. It's not an impossible task by any means; there are schools out there catering for various different needs and doing it well, if not in an 'outstanding' capacity. Good practice needs to be shared and shared widely. Minus any 'blame game' indications, such a ruling also means that some further calm and objective discussions and investigations about ways to reduce and minimise acts of physical aggression should at the same time, also be prioritised (see here and see here and see here for some possible research directions). Minus that is any psychobabble explanations, sweeping generalisations or 'one-size-fits-all' sentiments being expressed...

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[1] Brede J. et al. Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school. Autism. 2017. Nov 9.

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Wednesday, 15 August 2018

On the question of suicide risk and chronic fatigue syndrome / myalgic encephalomyelitis continued

The paper by Andrew Devendorf and colleagues [1] brought me back to a complicated and sensitive topic previously discussed on this blog (see here) regarding the issue of suicide risk in the context of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specifically, the Devendorf findings provide some potentially important information about the possible reasoning behind suicide risk in the context of ME/CFS: "(1) feeling trapped and (2) loss of self, loss of others, stigma and conflict."

Based on discussions with 29 people diagnosed with ME/CFS "who endorsed suicidal ideation but did not meet depression criteria" researchers, including one Leonard Jason (see here), discussed some of the hows-and-whys of such suicidal ideation. As per the 'did not meet depression criteria' sentiments of the research, this work was less about 'mental health diagnoses affecting suicide risk' and more about how thoughts, feelings and situational factors might play a role. And as per the two variables highlighted by the study - 'feeling trapped' and 'loss of self & others and the stigma and conflict' generated by this incapacitating condition(s), some clear areas for further research and clinical attention emerged.

I've covered the sensitive issue of suicide (risk, ideation, completion) quite a few times on this blog for all-manner of different reasons (see here and see here for examples). In the most part, my musings have been on research into suicide where a specific label/condition/disorder has been diagnosed, and how facets of such labels/conditions/disorders *might* at least partially, 'intrinsically' elevate the risk of suicide ideation or beyond. The Devendorf findings kinda deviate from such 'intrinsic' sentiments, insofar as examining the implications of an acquired physical disability (see here and see here) and the onward the physical (and mental) restrictions of a condition seemingly elevating the risk of suicidality. By saying all that, I'm not making any sweeping generalisations...

I don't think anyone should really be surprised by the Devendorf results. With ME/CFS you have a condition that literally steals life from people; for example, rendering previously fit and active people to sometimes being bed-bound for days and days (or even longer) at a time. Add in a 'boom-bust' pattern of symptoms (see here) and the various 'environmental' effects (to employment, finances, social life, etc) of the condition, and well, I'm often surprised how resilient people with ME/CFS are.

I noted also how the words 'stigma' and 'conflict' were also detailed in the Devendorf study, and what implications this might have for quite a few areas of current research and clinical practice in relation to ME/CFS. I'm thinking specifically about the whole 'biopsychosocial (BPS) thing' that seems to have pervaded ME/CFS thinking down the years (see here), and how psychology in particular, seems to have over-stepped it's usefulness in relation to ME/CFS. It's kind of a coincidence that as I write this post, another article including Keith Geraghty [2] on the authorship list, is published discussing how some ME/CFS patients and patient groups have been labelled as 'militant' (or similar words and phrases) on the basis of them pushing back against medical dogma as a function of their own experiences of BPS-backed 'intervention' for example (see here). Militant is one word that has been used, 'vexatious' is another (see here).

"Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available." This sentence serves to reiterate that suicidality in the context of ME/CFS is perhaps not something that should necessarily be thought of as intrinsic to the condition(s). It emphasises how issues like 'hopelessness' at the state of medical knowledge about ME/CFS, about the lack of biological explanation for the condition, and the lack of intervention options (not BPS guided I might add) may play a role in thoughts and feelings related to suicidality. It also provides another rather pressing reason why less 'psychologising' and more biological science needs to be dedicated to the hows-and-whys of ME/CFS and the search for a cure...

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[1] 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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Tuesday, 14 August 2018

Autistic traits carrying a 'cognitive cost' into old age?

I don't think anyone should be too alarmed at the findings reported by Gavin Stewart and colleagues [1]. But their observation that "autism traits as measured by the BAPQ [Broad Autism Phenotype Questionnaire] may confer additional risk of cognitive decline in aging" represents something that requires quite a bit of further investigation.

Some twenty 'older' adults who were questioned and deemed to have met criteria for the broader autism phenotype (BAP) were tested on skills related to executive function alongside episodic memory. Their results were compared with twenty 'older' adults who did not reach criteria for the BAP. Authors reported that: "Despite no differences in age, sex ratio, educational history or IQ, the BAP group demonstrated poorer performance on measures of executive function and episodic memory compared to the COA [control older adults] group." They interpret this in the context of that 'additional risk of cognitive decline in aging'.

The numbers of participants in the Stewart study were low and imply that one has to be quite careful about making any sweeping generalisations as a result. Bear also in mind that the BAP does not necessarily equal autism or autism spectrum disorder (ASD) as a function of it describing sub-threshold autistic traits (sub-threshold for a diagnosis). Traits, I might add, that are seemingly not just potentially representative of autism (see here for one example).

But set within a 'gap' in the research base looking at autism in older adults (see here), there is a scheme of work to follow. If for example, the Stewart 'trend' does overlap with the experiences of older adults on the autism spectrum in terms of 'cognitive decline', there is a whole barrage of potentially important implications to consider. More so when one considers that the autism prevalence data continues to head in only one direction (see here) and what this means for societal financial and resource planning.

Just before I go, one more detail was revealed in the Stewart paper: "Older adults who met the BAP criteria also reported higher levels of depression and anxiety." Continuing a theme on this blog that various over-represented issues/diagnoses in relation to autism might not be best described as just being 'comorbid' (see here and see here and see here), I believe that this finding adds further weight to the notion that autistic traits (clinical and sub-clinical) might have some important 'direct' relationships with other psychopathology. Not necessarily a welcome opinion in some quarters, but something that also requires a lot more investigation.

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[1] Stewart GR. et al. Aging with elevated autistic traits: Cognitive functioning among older adults with the broad autism phenotype. Research in Autism Spectrum Disorders. 2018; 54: 27-36.

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