"...although their autistic traits were sometimes helpful, at other times they hindered their progress"

There's quite a lot of important information to be gleaned from the findings reported by Ginny Russell and colleagues [1] (open-access) following their questioning of autistic adults (or adults with autism if you prefer) about how they viewed themselves. How for example, said participants viewed their abilities and how "these abilities had helped them in their everyday lives: at work, in their relationships with other people, and at home" makes for interesting firsthand reading.

I have quite a lot of time for the primary author on this paper given other research she has produced (see here) and her recent involvement in an important paper that basically said what many people had been thinking for a while: autism research is typically biased against those who present with autism and intellectual (learning) disability [2]. That last research theme seems to have been something (partially) taken on board in this recent paper from Russell et al given their inclusion of voices from various 'parts' of the autism spectrum including those "receiving high-level support (living in full-time residential care)."

So: "All but one participant was able to describe their own traits and how these had benefited them, and the majority of participants could and did attribute these to autism." Various traits were discussed in the interviews (n=28) held with participants (n=24); key among them were "perceptual differences, memory, focus, and attention to detail, logic, and vivid imagination." Interview data / responses were also coded into various themes: "(1) experience of difference, (2) false dichotomies, and (3) moderating influences" which similarly provided further interesting data.

In relation to the 'experience of difference' we are told that this theme "encompassed how participants conceptualized the causes of their difference from “neurotypical” (NT) individuals." Although I am less than enamoured with the misnomer that is 'neurotypical' (see here for some discussions on how there is no single way for a brain to be 'normal') there is some important information contained in those accounts. Specifically how "most participants talked about autism as a set of qualities they possessed rather than an illness they had."

The theme of 'false dichotomies' was equally revealing as: "Participants gave accounts of traits as advantageous and simultaneously disadvantageous in the workplace, in relationships, and at home." The phrase 'double-edged sword' seems to be particularly apt when it came to the descriptions offered by participants in the Russell study; also denoting how: "There was no boundary between a strength and a weakness." This continues a theme from other research discussed recently (see here). Interestingly too under this category, some participants reported that: "there is no “autism—self” opposition... thus [they] saw their abilities and skills more holistically as generalized personality traits, which included autistic traits." Autistic traits as part of a wider picture eh?

The final theme - "Moderating influences" - also included some interesting data. Authors defined this as: "Factors that might determine whether a participant experienced a trait as advantageous or disadvantageous were classified as moderating influences." Perhaps unsurprisingly, social context was something mentioned in this theme, with examples like serving in the army or being incarcerated in prison being places where "a lack of empathy" and "sticking to routines" respectively, were seen as the right places to present such behaviours. Personally I'd quibble that a lack of empathy is a good place for the armed forces given that serving in active theatre is only part of the job but ho-hum. Another important part of the 'moderating influences' theme was the issue of 'controllability and extent'. As per my musings on the issue of 'stimming' and autism (see here again) this is probably the best example of that 'double-edged sword'. How things like focus, attention to detail and logic whilst all very positive traits, can sometimes become 'out of control' and cause all-manner of issues to a person.

There are of course caveats to the Russell findings, not least that their study reflected "a lack of severely intellectually and language-impaired participants" and so results cannot be generalised to everyone on the autism spectrum. Indeed they offer a solution: "Eliciting the opinions of these groups would require a different approach, perhaps observational" which really should be a research priority (see here). I'd also have been interested to see data on the comorbidity profile of the participant group too, bearing in mind that autism rarely appears in some sort of diagnostic vacuum (see here). And I'm also minded to mention that similar to other discussions on the 'positives' of other diagnostic labels (see here) one has to remember that autistic traits are not just something noted alongside a diagnosis of autism, and what this means when using emotive terms like "autistic advantage". This, particularly in the context that autism is diagnosed on the basis of traits significantly impinging on functioning and daily life (see here).

I suppose the bottom line from the Russell findings is summed up pretty well in their conclusions: "The findings make us wary of describing autistic advantages as fixed traits, rather their expression (and development) is context dependent." In other words, things like 'situation' influence whether a trait is seen as a deficit or an advantage. And just because a trait might initially be start out as an advantage or a deficit does not mean that it will necessarily stay that way across many different situations and various different time periods...

----------

[1] Russell G. et al. Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study. Autism in Adulthood. 2019. Apr 3.

[2] Russell G. et al. Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Mol Autism. 2019 Mar 1;10:9.

----------

Disclosure of autism and juror perceptions

The paper by Katie Maras and colleagues [1] really interested me. It describes results based on examining "mock juror perceptions of credibility and culpability of a defendant who is described as displaying autistic-like characteristics and behaviours, and whether the provision of information about the defendant’s ASD [autism spectrum disorder] diagnosis alters these perceptions." Such investigations continue a theme in autism research circles and beyond on 'how autism is viewed' (see here and see here and see here) and how disclosure of an autism diagnosis might be important and influential in various circumstances.

Given the focus on the criminal justice system and autism in this post, I'm also going to pass some brief comment on the paper by Kamaldeep Bhui [2] too. That paper was more concerned with trying to "understand radicalisation, ethical and definitional issues, and how public health approaches may help." Minus any sweeping generalisations, the label of autism was also mentioned in the Bhui paper and could be relevant to the Maras findings too.

So, autism and the criminal justice system. This is not the first time that this topic has been discussed on this blog (see here and see here for examples) reflective of some ever-increasing research interest. It highlights how a diagnosis of autism is by no means protective of someone coming into contact with law enforcement services and/or the court system, and how various discussions are still needed on the hows-and-whys of such contact, as well as ensuring that those on the autism spectrum are treated justly and fairly in the eyes of the law.

In the Maras paper researchers report that: "One-hundred-and-sixty jury-eligible participants read a vignette describing a male who was brought to the attention of police for suspicious and aggressive behaviours and displayed atypical behaviours in court." The specific imaginary crime of this individual was "assault and battery of a police officer" where "the defendant was behaving aggressively at a train station and when police officers tried to restrain him with handcuffs, he became violent and struck an officer." Further details also included: "it reportedly emerged that the defendant was trainspotting and was upset because his train was cancelled."

Half of participants were randomly allocated to receive "Label+info" and the other half "no label". The 'no label' group received no further information about the defendant or any possible diagnosis. The 'label+info' group "were informed that the defendant had been assessed by a forensic psychiatrist and was diagnosed with ASD, and they were given further information defining ASD and how it impacted on his behaviours." Participants were then asked to make various judgements about the imaginary case and defendant.

Results: "The provision of a label and information led to higher ratings of the defendant's honesty and likeability, reduced blameworthiness, and resulted in fewer guilty verdicts, and more lenient sentencing." Various themes are detailed by the authors based on their findings: honest, inappropriate language, culpability and consequences.  Interestingly, on the topic of 'consequences', even some of those in the 'no label' group indicated that "they thought the defendant might have ASD" and how punishment would perhaps be less useful than "some form of rehabilitation to help the defendant." The net result is that jurors may be sympathetic to the presentation of autism in some contexts of involvement with the criminal justice system provided they are given the appropriate information about the individual concerned.

I take some comfort from the Maras findings that the law may not be blind to the circumstances around particular defendants and the crimes for which they are accused. Similar to the guidance here in Blighty when it comes to 'mentally disordered offenders' the law recognises that whilst crime is crime, sometimes things aren't always as straightforward as they seem (see here). By saying that I'm not trying to deflect away from why the law is there and the often serious effects that crime has on individuals (victims) and society; merely that 'context' is sometimes important too.

Going back to the Bhui findings and discussions pertinent to understanding radicalisation and particularly the idea that: "Common mental illnesses appear to be a risk factor at a population level for developing extremist beliefs, and psychoses and autism are reported as more common amongst some terrorist offenders" there are also implications. One has to be sensitive and avoid any sweeping generalisations when discussing this topic, but the issue of radicalisation and autism has been talked about before (see here). One of the primary themes to emerge from the growing data in this area is that a pattern of fairly unique vulnerabilities seems to follow autism that *might* make someone more susceptible to unscrupulous individuals intent on spreading their own agendas and getting someone else to do their dirty work.

Applying the Maras results to the Bhui discussions, one would hope that both mock and real jurors would apply the same logic as and when offences linked to radicalisation in the context of autism are presented to them. One would hope that a diagnosis of autism and everything that entails would be taken into account as and when such crimes are put to them. Indeed, perhaps that is the next round of study for Maras et al if they should wish to replicate their study: replace 'assault and battery' with something linked to radicalisation. I for one, would be interested in what results they observe and what we can potentially learn from them.

----------

[1] Maras K. et al. Mock Juror Perceptions of Credibility and Culpability in an Autistic Defendant. J Autism Dev Disord. 2018 Oct 31.

[2] Bhui K. Radicalisation and mental health. Nord J Psychiatry. 2018 Nov 1:1-4.

----------

On puzzle pieces and autism

At first reading I was a little confused by the paper published by Morton Ann Gernsbacher and colleagues [1] talking about how puzzle pieces used as part of various organisations insignia concerned with autism might stir up the wrong kind of sentiments about the diagnosis. Confused because, with all the pressing needs related to autism research and practice - diagnosis, services, comorbidities, quality of life, happiness! - it seemed a little trivial to publish a research paper on what symbols an organisation might wish to choose and their subsequent connotations.

With a little more thought, my opinion of this research softened slightly as I can see how there might be some important psychological forces at work based on the imagery used to represent autism. Indeed, the puzzle piece and autism has been the topic of quite a few discussions in various quarters (see here) reflective of how some views and opinions about autism have changed down the years.

On this particular research occasion authors questioned some 400 people about the associations the general public might make regarding the use of the puzzle piece in the context of autism. They concluded that: "Puzzle pieces, both those used as autism logos and those used more generically, evoked negative implicit associations... and negative explicit associations" onward to associations with words like "incompleteness, imperfection, and oddity." Authors even concluded that: "If an organization's intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization's use of puzzle-piece imagery is apt." Whoa. Where did that come from I wonder?

I've kinda approached this topic before on this blog in the context of how associations between organisations here in Blighty and brands such as Thomas the Tank Engine might have similar connotations when it comes to the perception of autism (see here). I suppose one could equally suggest that whilst something like Thomas the Tank Engine is enjoyed by many children on the autism spectrum (as well as many children not on the autism spectrum!) there is always a risk that it might feed into a stereotype. In the case of trains, one can see the old 'systemising' link coming through and onward the shadow of the 'extreme male brain' thingy-majig that has, I think, been rather overplayed in the context of autism (see here). Indeed, with the classical association between trains and boys ('boys and their toys') one might be inclined to ask what such an association might mean for the the perception of the presentation of autism in females for example? And onward what imagery/association would be most appropriate in the context of female autism minus any sweeping generalisations?

Of course, one can find meaning in any imagery used in the context of any organisation linked to a specific diagnosis or condition. At least some opinions on this topic are likely also to reflect specific viewpoints about the organisation in question as per the MSSNG project funded by Autism Speaks (who coincidentally use a puzzle piece in their logo) and how that has been interpreted in some quarters. I do think we have to be quite careful in this area not to slide from one extreme to another in relation to how wide the autism spectrum is and indeed, ensuring representation of the entire autism spectrum when it comes to public perceptions (see here). I have one suggestion: with all the creative talent out there on the autism spectrum, perhaps organisations linked to autism should ask their members with autism to help design new logos...

To close, some artwork from a rather talented chap who might be able to help.

----------

[1] Gernsbacher MA. et al. Do puzzle pieces and autism puzzle piece logos evoke negative associations? Autism. 2017 Aug 1:1362361317727125.

----------

Correcting ophthalmic problems in autism

'Does Correction of Strabismus Improve Quality of Life in Children with Autism Spectrum Disorder?' went the title of the paper by Pinar Ozer and colleagues [1]. Yes, it may very well do was the answer (but with certain caveats and the requirement for a lot more research in this area).

Strabismus, a condition where the eyes don't line up in the same direction, can sometime have some quite noticeable effects on a person's vision and indeed, has been linked to various other non-vision related symptoms and outcomes.

Ozer et al looked to identify "the impact of optical or surgical correction of the strabismus on the child using a questionnaire for parents." The published research of this team has been previously discussed on this blog (see here) with ophthalmic findings in mind, and the requirement for quite a few more resources to be put into eye examinations when autism is diagnosed (see here). This time around they were discussing what happens when such eye issues are resolved.

I'm not completely convinced that the Ozer findings this time around reporting 'significant improvements' in areas of "psychosocial interactions" is as it stands, a methodologically firm finding just pertinent to autism. Although no expert on strabismus, from what I gather, the 'cosmetic' side of the condition can have some far-reaching effects on 'psychosocial' functions. I daresay that such effects would be just as prevalent in autism as they are in the general population and hence, correction would likely have similar outcomes.

I am more open to the idea that if strabismus is affecting vision, as in causing something like blurred or double vision, correction of the issue may in some cases have some important 'effects' in relation to autism. Accepting that structural issues with the eye are not necessarily the same as or causative of visual perceptual issues that seem to crop up quite often in the autism research arena, it is not outside the realms of possibility that something like strabismus could be part and parcel of visual effects for some people.

I suppose to reiterate, screening for structural eye/vision issues when it comes to autism remains a pretty important area.

To close, karate gradings for one of my brood today and this is what they will be attempting...

----------

[1] Ozer PA. et al. Does Correction of Strabismus Improve Quality of Life in Children with Autism Spectrum Disorder: Results of a Parent Survey by Ophthalmologists. Semin Ophthalmol. 2016 Sep 6:1-6.

----------

Ozer PA, Kabatas EU, Bicer BK, Bodur S, & Kurtul BE (2016). Does Correction of Strabismus Improve Quality of Life in Children with Autism Spectrum Disorder: Results of a Parent Survey by Ophthalmologists. Seminars in ophthalmology, 1-6 PMID: 27599387

Autism 'disclosure cards' and negative judgements?

I have to say that I initially felt slightly uncomfortable reading the study results published by Jillian Austin and colleagues [1] providing "preliminary validation for the use of autism disclosure cards in buffering negative judgment." Uncomfortable because, despite the fact that it is human nature for people to stop, stare and perhaps question something when it seems 'out of the ordinary', the idea that when children with autism specifically 'misbehave' in a public place their parents need to somehow justify their child's behaviour to a staring crowd of strangers seems a trifle unfair.

As is the experience of most parents, whether their child is diagnosed or not with autism or anything else, children are not always 'little angels' every time they are out and about ("no, it is not appropriate to start a public conversation about farting when one 'catches a whiff' of something in the shopping centre"). Most parents can usually get away with a nervous smile to any interested on-lookers (or nosey parkers) and that really should be the end of it. Of course, for some children under some circumstances, behaviour can sometimes go beyond just tantrums and onward can raise a few eyebrows but...

Austin et al started with the premise that parents of children with autism are "increasingly using disclosure cards to reduce negative perceptions" when out and about with their children to make "an invisible diagnosis apparent". They devised an experiment using "vignettes of a parent-child interaction in which the child was misbehaving and investigated the efficacy on 160 parents' perceptions." Disclosure cards were provided to some of the parent participants all of whom had at least one child aged between 6-12 years. Various factors covering "Maternal Skill Deficit and Negative Reaction" and "Sympathy for Mother" were analysed as a function of receipt of disclosure cards or not.

"Those who received the disclosure card reported significantly lower Maternal Skill Deficit and Negative Reaction to the Dyad and no difference in Sympathy for the Mother." In other words, making an 'invisible' diagnosis more visible seemed to have an effect in terms of views around 'it must the parent's fault that their child is behaving that way' (negative judgement) but did little when it came to empathising with the mother's position in that situation.

Austin and colleagues discuss how the 'invisibility' of autism and frames of reference - "people will evaluate and compare individuals to some perceived norm or standard" - in this case, so-called typically developing children, may be driving forces underlying those negative judgements from others about children on the spectrum and their parents. I can't quibble with this line of thought or what impact it might have on children and their parents (and other significant others). But it strikes me that in these days of increased numbers of children being diagnosed with autism (see here) - indeed the numbers just keep on growing - and accompanying high-profile campaigns to raise awareness about autism, movement towards the idea that every parent has to 'identify' their child as being on the autism spectrum as and when they, pardon my French, 'fart the wrong way' seems to place too much emphasis on the child and parent and not enough on their fellow citizens and their own understanding and reactions.

OK, I get that people have busy lives and that outside of media depictions (see here), most people wouldn't typically ask 'could it be autism?' when a child has a 'meltdown' in a public spot. I also get that under some circumstances, making particular groups of people aware of a person's autism might be a good thing as per contact with law enforcement agencies for example. The question however of whether strangers really need to be given quite sensitive information about a person and 'their diagnosis' just because they (the stranger) 'can't deal with a particular situation' strikes me as being more than a little one-sided...

----------

[1] Austin JE. et al. Influencing Perception About Children with Autism and their Parents Using Disclosure Cards. J Autism Dev Disord. 2016 May 30.

----------

Austin JE, Zinke VL, & Davies WH (2016). Influencing Perception About Children with Autism and their Parents Using Disclosure Cards. Journal of autism and developmental disorders PMID: 27241346

Autism: visual stress and coloured overlays?

The small study from Amanda Ludlow & Arnold Wilkins [1] is introduced for your reading pleasure today and the idea that "atypical sensory behaviours and symptoms of visual stress" were not uncommon features when it came to a diagnosis of autism and/or Tourette's syndrome (TS). As per that opening sentence, this was a small study - 12 children with autism, 12 children with TS and 12 controls - but that doesn't mean that the results might not be important...

So far you might be slightly underwhelmed by the idea that sensory issues (and onwards linked behaviours) might be over-represented when it comes to autism given what has already been talked about for quite a few years. But... following the introduction of a colour overlay (a coloured plastic sheet placed over text) supposedly thought to reduce visual stress, for at least for some children with autism there seemed to be some potential effects noted: "Four of the 12 children with ASD [autism spectrum disorder] and none of the control children read over 15% more quickly with an overlay." The test by the way, used to assess reading performance was the Wilkins Rate of Reading Test designed by one of the authors.

I'm interested in these findings. In one of the earliest posts on this blog, I discussed the idea that visual perceptual issues accompanying a diagnosis of autism might, to some extent, be 'countered' via the use of coloured overlays or tinted glasses (sometimes called Irlen lenses) (see here). Alongside a few quite well-known people on the autism spectrum using such visual aids, there is quite an appetite for this type of approach here in Blighty as for example, per the writings and practice of people such as Ian Jordan. Accepting that the plural of anecdote is not data, I've seen Ian talk about his work, and some of the case studies are really rather interesting including the possibility of a link between vision and coordination.

A quick scan of the other peer-reviewed literature in this area suggests that Ludlow & Arnold are no strangers to this potentially important area of autism research although quite a bit more needs to be done with regards to effectiveness and perhaps identify those potential 'best responders' to this type of approach. I might also suggest that said investigations might also benefit from some good old-fashioned ophthalmic inquiry too given what is starting to be understood about eye pathology and autism (see here).

I appreciate that talk of Irlen lenses and coloured overlays may not be everyone's cup of tea in light of the various 'discussions' these interventions have had when it comes to the diagnosis of dyslexia down the years. Yes, science definitely needs to come before any big claims are made or marketed. But the idea that sensory issues might be a rather common occurrence in relation to autism and that vision in particular might be an important source of those sensory issues reported perhaps means that this research avenue should be more thoroughly explored given that there may be something that can be done to alleviate visual stress as and when it does occur.

----------

[1] Ludlow AK. & Wilkins AJ. Atypical Sensory behaviours in children with Tourette's Syndrome and in children with Autism Spectrum Disorders. Res Dev Disabil. 2016 Jun 7;56:108-116.

----------

Ludlow AK, & Wilkins AJ (2016). Atypical Sensory behaviours in children with Tourette's Syndrome and in children with Autism Spectrum Disorders. Research in developmental disabilities, 56, 108-116 PMID: 27286465

Pattern-related visual stress in ME/CFS

At the time of writing this post, important discussions about ME (myalgic encephalomyelitis) and/or CFS (chronic fatigue syndrome) are coming thick and fast.

Years of talk about 'yuppie flu' and other even more derogatory terms to describe the often very disabling experience of ME/CFS (SEID if you wish) have seemingly been replaced by sensible discussion on things like a research agenda for CFS/ME (at least in some parts of the world). As per other blogging occasions where CFS/ME has figured, 2015 is proving to be a bit of a turning point...

Who do we have to thank for this shift in thinking? Well, my bet would be on the thousands of people who suffer with ME/CFS (yes, people do suffer with the condition) and their families and loved ones who have tirelessly campaigned down the years for appropriate recognition of the condition despite living an often torrid existence as a consequence of their symptoms. Patient power in action you might say. I'd also drop in a name or two for some research pioneers such as Jose Montoya (see here) and colleagues and the research tag-team that is Mady Hornig and Ian Lipkin (see here) (they have fingers in many research pies!) for their important contributions. A colleague of mine, Prof. Malcolm Hooper, also deserves a mention (see here) in that list of the great and the good, alongside countless other investigators and clinician folk.

Part of the shift in our thinking and understanding of ME/CFS, aside from some recognition that several states/conditions/diagnoses might reside under the umbrella terms ME/CFS, is the idea that the physiology and biology of the disease course are deserving of quite a bit more study over and above the focus on just the psychological 'effects' of the condition. Heated discussions about the PACE trial (see here) and its follow-up (see here) have served a useful purpose insofar as stressing that 'psychology' may be part and parcel of CFS/ME as an 'effect' (see here) but this does not mean that more fundamental biology and biochemistry should be ignored as potential aetiological and intervention options (see here).

The idea that there may be psychological 'effects' to cases of ME/CFS is something explored in a recent paper by Rachel Wilson and colleagues [1] who concluded that their findings "provide evidence of altered visual perception in ME/CFS." Based on data from a small group of people diagnosed with ME/CFS compared with age and sex-matched asymptomatic controls, researchers set out to "determine vulnerability to pattern-related visual stress." Pattern-related visual stress (PRVS) by the way, refers to problems stemming from looking at certain types of visual stimuli. For the purposes of their study, Wilson et al used the Pattern Glare Test to determine PRVS (further information can be read here although I am told that those with photosensitive epilepsy should resist any further temptations to look for the patterns used).

"Pattern-related visual stress may represent an identifiable clinical feature of ME/CFS that will prove useful in its diagnosis." That was the conclusion reached on the basis of the results obtained, and specifically that: "ME/CFS patients exhibited significantly higher pattern glare scores than controls for the mid-SF [spatial frequency] pattern" among other things. I might reiterate that this was quite a small study in terms of participant numbers and also in the context of assessing visual stress so I'm cautious about any claims of such a variable being somehow diagnostic at this time. Some media write-up of the study can be seen here.

Nonetheless, these are interesting results and perhaps map on to other related data from some of the authors on the Wilson paper [2]. Quite a few moons ago, my colleagues and I also talked about the possibility of visual manifestations included in the context of [some] ME/CFS [3]. On that occasion, we discussed the idea that light sensitivity or photophobia might be something to look at, allied to issues such as auditory hyperacuity (noise sensitivity) and other, more cognitive-related issues appearing alongside the more traditional fatigue-related aspects to presentation. I cannot say for sure that visual stress and auditory acuity issues are linked, but one might reason that within the wider context of perceptual issues being part and parcel of at least some cases of ME/CFS, there may be more research to do in this area with multi-sensory perception in mind. I might add that ME/CFS research might be able to learn a few things from other areas of research too (see here and see here) given some research history with ocular manifestations in mind [4].

The question is then: what are the biological underpinnings of such issues? Well, I have some ideas about that too including entertaining the potentially controversial notion that there may be an 'infectious' component to something like ME/CFS [5] at least in some cases...

----------

[1] Wilson RL. et al. Increased Vulnerability to Pattern-Related Visual Stress in Myalgic Encephalomyelitis. Perception. 2015 Nov 3. pii: 0301006615614467.

[2] Hutchinson CV. et al. Vision-related symptoms as a clinical feature of chronic fatigue syndrome/myalgic encephalomyelitis? Evidence from the DePaul Symptom Questionnaire. Br J Ophthalmol. 2014 Jan;98(1):144-5.

[3] Whiteley P. et al. Correlates of Overlapping Fatigue Syndromes. Journal of Nutritional & Environmental Medicine. 2004; 14: 247-259.

[4] Potaznick W. & Kozol N. Ocular manifestations of chronic fatigue and immune dysfunction syndrome. Optom Vis Sci. 1992 Oct;69(10):811-4.

[5] Underhill RA. Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease. Med Hypotheses. 2015 Oct 19. pii: S0306-9877(15)00382-5.

----------

Wilson RL, Paterson KB, & Hutchinson CV (2015). Increased Vulnerability to Pattern-Related Visual Stress in Myalgic Encephalomyelitis. Perception PMID: 26562880

Person with autism or autistic person?

Although it might seem like a bit of a distraction, I read with interest the paper by Lorcan Kenny and colleagues [1] (open-access) discussing the ways and means that we talk about autism here in Blighty. Some related media on the paper can be found here and here.

I mentioned the word 'distraction' because I'm sure that some people (many people?) might be wondering why we are discussing the various ways and means that autism is described when there is so much more for research to do in trying to improve the lives of those diagnosed as being on the autism spectrum. Indeed, saving lives may be more accurate in some cases. I would agree that the autism research agenda is pretty full when it comes to issues such as early identification, experimentally testing the myriad of interventions out there and how the various 'comorbidities' that seem to be over-represented alongside a diagnosis can impact on quality of life and what we can do about them. I'm also, however, of the opinion that the way we talk about autism can also impact on a person's life in important areas such as dignity, self-esteem and self-identity and such viewpoints may have important knock-on effects for people and society at large.

The Kenny paper is open-access so it requires little additional rambling from me. Continuing a theme of some of the authors looking to ask various stakeholders (people with autism / autistic people, parents, professionals) about facets of the autism research and practice landscape (see here and see here), they sought views "about the terms they use to describe autism." This was all done via an online survey so one has to be a little bit guarded about the quality of the results obtained, although some 3500 people did complete the survey and had their results included.

"The results clearly show that people use many terms to describe autism." No real surprises there considering the various groups that responded and the myriad of ways that autism has been described past and present. "The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups." Again, I'd be hard-pressed to say there was anything too novel there.

But: "The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents." Quite a bit of this seemed to touch on the idea of 'ownership' of the label and "one’s relative distance from autism." Further: "the closer one was to directly experiencing autism hour-to-hour, day-to-day, the more likely the community member endorsed the use of disability-first (rather than person-first) terms."

Various themes also emerge in the Kenny paper covering the ideas of 'natural diversity' and the use of "value-laden terms such as ‘disability’, ‘deficit’ or ‘disorder’, which imply that any difficulties experienced by autistic people are a result of them being ‘broken’ in some way." I agree to some extent that autism and the wider concept of the broader autism phenotype (BAP) do indeed root the behavioural presentation of autism as part of the tapestry known as humanity. As someone once said to me 'everything seen in autism is also seen at some stage of typical maturation -- it is the intensity and nature of the behaviour(s) and its effect on a person's life that merits diagnosis'. I'd perhaps also suggest that as other commentators have mentioned, one has to be a little careful not to overdo the whole natural diversity bit as a means to water down what autism can mean for a lot of people in terms of 'disability' and it's sometimes stark effects on quality of life.

Finally, and hopefully without upsetting anyone, I do have to take issue with a particular point raised in the Kenny paper: "Many adults were keen to emphasise other qualities of autism, counteracting commonly held beliefs that perpetuate in the media. They stressed that autism is a lifelong condition – that they do not ‘grow out of it’ when they become adults." 'Growing out' of autism is not necessarily the best way of describing the idea that some of the signs and symptoms of autism might change over time but it is a topic that has cropped up on this blog before (see here) under the guise of 'optimal outcome'. As per the findings reported by Helles and colleagues [2] there is an increasing realisation that for some on the autism spectrum, the behavioural presentation is not static and indeed might 'move' someone outside of the diagnostic confines of the label (see here for more explanation). The ways and means that this happens is still up for debate (learned strategies, intervention, maturation?) and even when this happens does not mean a symptom-free, problem-free life (see here); although even here I'm slightly guarded [3] in making too many sweeping generalisations.

Perpetuation of the ideas that (a) all autism is the same and (b) all autism is fixed and 'lifelong' however does little to forward the agenda of (neuro)diversity and the full meaning of the important sentence: 'if you've met one person with autism, you've met one person with autism'.

More than that though, they don't seem to be supported by the available peer-reviewed science...

Music: Nirvana - About A Girl.

----------

[1] Kenny L. et al. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism. 2015. July 1.

[2] Helles A. et al. Asperger syndrome in males over two decades: stability and predictors of diagnosis. Journal of Child Psychology and Psychiatry. 2014. 3 October.

[3] Orinstein A. et al. Psychiatric Symptoms in Youth with a History of Autism and Optimal Outcome. J Autism Dev Disorder. 2015. July 9.

----------

Kenny L, Hattersley C, Molins B, Buckley C, Povey C, & Pellicano E (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism : the international journal of research and practice PMID: 26134030

More ophthalmic findings in autism

"Ophthalmic pathology was noted in 26.9 % of patients with ASD [autism spectrum disorder], of which 22 % had significant refractive errors and 8.6 % had strabismus."

That was the conclusion reached in the paper by Emrah Utku Kabatas and colleagues [1] based on the premise that: "Children with autism spectrum disorders (ASD) frequently have ophthalmologic disorders"; that is, issues with the anatomy and function of the eyes.

We've been here before. I'll take you back to the post that I wrote around the paper by Ikeda and colleagues [2] and their quite remarkable suggestion that ophthalmic pathology was present in 40% of people with autism or a related disorder. Such cumulative evidence should be enough to convince even the most sceptical healthcare providers that they should be setting up regular eye care appointments for every person diagnosed with autism. More so when perhaps autism is joined with faddy eating habits and the important effects that nutritional deficiency might also bring to eye health (see here).

Music: Kate Bush - Hounds of Love.

----------

[1] Kabatas EU. et al. Initial Ophthalmic Findings in Turkish Children with Autism Spectrum Disorder. J Autism Dev Disord. 2015 Mar 24. 

[2] Ikeda J. et al. Brief report: incidence of ophthalmologic disorders in children with autism. J Autism Dev Disord. 2013 Jun;43(6):1447-51.

----------

Kabatas EU, Ozer PA, Ertugrul GT, Kurtul BE, Bodur S, & Alan BE (2015). Initial Ophthalmic Findings in Turkish Children with Autism Spectrum Disorder. Journal of autism and developmental disorders PMID: 25800865

Pain and adolescent Chronic Fatigue Syndrome

"We found a higher prevalence of severe pain among adolescents with CFS [Chronic Fatigue Syndrome] and lowered pain thresholds compared with HCs [healthy controls]".

That was the headline generated by the study from Anette Winger and colleagues [1] (open-access) looking to describe several parameters tied into experience of pain in the context of CFS. Further: "The total sum of bodily symptoms represented a heavy burden with great functional consequences".

Your hokey pokey dragon is out helpin' Santa Claus pull his sled!

The Winger paper is open-access, and pretty self-explanatory in terms of the hows and whys of the study (including strengths and limitations) so no need for me to further complicate things. As part of the NorCAPITAL project (The Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial) (ClinicalTrial.gov entry here) which has already reported on the use of clonidine for CFS [2], the latest publication is an important add-on.

There are a few details included in the results which do however merit some additional highlighting. So:

• "In the present study, almost three-quarters of the adolescents with CFS suffered from weekly pain, and pain on a daily basis was a problem for half of the patients". This was "highly significant" when compared with reports from controls, particularly where two-thirds of CFS participants reported weekly headaches. 
• Muscle and joint pain were also recorded by adolescents with CFS alongside almost half reporting abdominal pain. Indeed, joint pain showed the most disparity between the groups with reports of such pain tipping 70% in the CFS group compared with only 10% of controls reporting this more frequently than once a month.
• When looking at result examining the pressure pain threshold (PPT) - "the minimum intensity of a stimulus that is perceived as painful" - and examining scores based on completion of the Brief Pain Inventory (BPI), authors concluded that: "At all measure points, PPTs were significantly lower (all p<0.001) among patients with CFS than HCs".
• "In our study, the adolescents reported that pain interfered with school, general activity and mood; however, we cannot conclude from this study that pain has a causal effect, because it could be the other way around". 

What's more to say about this research? Well, the very important message that the presentation of CFS might go well beyond just 'chronic fatigue' is paramount. This is not new news to science and practice as per the various reviews on the topic of pain exemplified by Nijs and colleagues [3]. I dare say that some public perceptions of CFS/ME would also change if more people understood that pain is a seemingly important manifestation of the condition. Oh and that CFS and pain sensation might not just be all in the mind...

I'm also inclined to introduce the condition fibromyalgia (FM) into proceedings, given the many and varied reports talking about key symptoms overlapping [4]. I'm not altogether sure of the hows and whys of FM and CFS connecting, but certainly the primary FM symptom of widespread pain and extreme sensitivity strikes me as being potentially important. With no medical advice given or intended and perhaps somewhat counter-intuitive to analgesia, the increasing body of work looking at the use of something like low-dose naltrexone (see here for some of my interest in this area) for pain in FM [5] may also very well be something in need of a little more study with pain in CFS in mind, alongside other possible pain relief options.

So then, The White Stripes with Ball and Biscuit.

----------

[1] Winger A. et al. Pain and pressure pain thresholds in adolescents with chronic fatigue syndrome and healthy controls: a cross-sectional study. BMJ Open. 2014; 4(10): e005920.

[2] Fagermoen E. et al. Clonidine in the treatment of adolescent chronic fatigue syndrome: a pilot study for the NorCAPITAL trial. BMC Research Notes 2012, 5:418

[3] Nijs J. et al. Pain in patients with chronic fatigue syndrome: time for specific pain treatment? Pain Physician. 2012 Sep-Oct;15(5):E677-86.

[4] Aaron LA. et al. Overlapping Conditions Among Patients With Chronic Fatigue Syndrome, Fibromyalgia, and Temporomandibular Disorder. Arch Intern Med. 2000;160(2):221-227.

[5] Younger J. et al. Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels. Arthritis Rheum. 2013 Feb;65(2):529-38.

----------

Winger, A., Kvarstein, G., Wyller, V., Sulheim, D., Fagermoen, E., Smastuen, M., & Helseth, S. (2014). Pain and pressure pain thresholds in adolescents with chronic fatigue syndrome and healthy controls: a cross-sectional study BMJ Open, 4 (10) DOI: 10.1136/bmjopen-2014-005920

Pain predicting sleep problems in autism

Not so long ago I talked about the paper from Smith and colleagues [1] on autism and obstacles to medical [comorbidity] diagnosis and treatment (see here). Aside from the need for professionals to overcome the issue of "a lack of expressive speech" as an impediment to undertaking a thorough medical work-up when presented with a person with autism, an important theme of that paper was the requirement to see beyond autism as being the 'reason' for every single behaviour or issue that affects a person. It's not.

Indeed, the paper by Megan Tudor and colleagues [2] which makes up the material for today's post, adds to that message with their report on pain as being a predictor of sleep problems for some children/young adults with autism. Once again, my thanks go to Natasa for providing the full-text version of the paper for my blogging consumption (yum!).

The long-and-short of the Tudor paper was as follows:

• Take two issues which have cropped up in the autism research literature more than once - sleeping issues and pain - and aim to examine "pain-related behaviors as a predictor of sleep problems in youth with parent-reported ASD using standardized parent-report measurement of both variables".
• Mothers of a sample of 62 children/young adults drawn from a larger study [3] [note to authors, your date is wrong for this reference] were questioned using several measures including the NCCPC-R (see here) and the CSHQ [4] (open-access) looking at pain and sleep respectively. I should also note that questionnaires were completed on-line and participants received a financial incentive to complete [a large chunk of] questionnaires.
• Results: parent-reported participant pain levels according to NCCPC-R scores "was high compared to normative information for this measure". Sleep issues were similarly elevated in the sample, particularly parasomnias. The discussion notes that pain scores were gathered across a slightly different timespan to the normative data (1 week retrospective report for the study vs. 2-hour observation period for the normative data) so one perhaps need to be a little cautious about this.
• Some regression analysis for scores on the two instruments revealed some potentially important results. So higher pain scores "predicted higher scores on CSHQ Total Sleep Disturbance" although with an R-squared value of 0.22 this is not necessarily a straight-forward connection. 
• Specific sleep problems including sleep duration, parasomnias and sleep-disorder breathing were also reported as being accompanied by a previous weeks pain-related behaviours and may well have had some very individual behaviours linked to them e.g. "problems with sleep duration were predicted by social communication of pain, such as comfort-seeking and being difficult to pacify" and "Parasomnias were predicted by facial communication of pain, such as grimacing or brow furrowing".
• The authors conclude that whilst there is more to do in this area of investigation (including the important use of control groups) their results should serve as a marker for healthcare professionals when dealing with children with autism who also present with sleeping issues. To quote: "how pain and sleep problems relate to one another and may affect children's daytime functioning...". This may have some far-reaching effects in terms of how sleep issues are traditionally managed when it comes to autism and other developmental disorders.

Going back to the my starting paragraph about autism not being to blame for every single behavioural manifestation noted among cases, I can't help but ask the question: why were parent-reported indicators of pain-related behaviours seemingly elevated in this sample? As far as I know - and I am just an outsider looking in - autism is not necessarily defined as a painful condition. Indeed, even the authors point to the possibility of a "high threshold for pain" [5] described in the DSM-IV TR diagnostic schedule for autism. Certainly if it was shown that autism 'is a painful condition', it would perhaps change some of the dialogue noted in Dr Insel's Four Kingdoms of Autism.

I do have a few theories about this notion of pain and autism however so bear with me. Tudor and colleagues allude to one of them insofar as discussions about "ongoing mild digestive discomfort" and "severe inflammatory bowel disease" with both issues having cropped up before on this blog previously. Thinking back to the paper by Kushak and colleagues [6] discussed in this post on lactase enzymes and autism, there is the suggestion that lactose intolerance (related to the sugar found in milk and dairy produce) "may contribute to abdominal discomfort, pain and observed aberrant behavior". With autism and inflammatory bowel disease in mind, the Walker paper [7] published a while back (discussed in this post) springs to mind.

Of course, I don't claim that every expression of pain noted in autism is necessarily one of being related to gastrointestinal (GI) function or dysfunction but one could certainly look to rule these issues out if one were being assiduous. As per some other potentially important issues, I might also refer you to a post I wrote a while back on self-injurious behaviour (see here) and other areas that one might look at when it comes to pain being potentially present in cases of autism.

The final angle that is perhaps worthy of exploration has already been touched upon in the additional reference by Allely [5] (see here again) in relation to how one of the core aspects of autism might itself have the ability to induce pain: sensory sensitivity. I say core aspect but am referring to the recent inclusion of sensory issues into DSM-V noting that not everywhere in the world has made the shift over the DSM-5. So, things like over sensitivity to sound for example, I assume may register on someone's behaviour and manner, just as issues with the visual modality might also have the ability to induce something like pain (see here). Indeed, migraine might be something else to look at with pain and autism in mind [8] and not just with the head in mind either [9]. As per previous statements, it all depends on how far one is willing to look into the issue of pain and the potential reasons for its presence...

----------

[1] Smith MD. et al. Autism and Obstacles to Medical Diagnosis and Treatment. Focus Autism Other Dev Disabl 2012; 27: 189-195.

[2] Tudor ME. et al. Pain as a predictor of sleep problems in youth with autism spectrum disorders. Autism. 2014 Feb 4. [Epub ahead of print]

[3] Walsh CE. et al. Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping. Res Autism Spec Disorder. 2013; 7: 256-264.

[4] Owens JA. et al. The Children's Sleep Habits Questionnaire (CSHQ): psychometric properties of a survey instrument for school-aged children. Sleep. 2000 Dec 15;23(8):1043-51.

[5] Allely CS. Pain Sensitivity and Observer Perception of Pain in Individuals with Autistic Spectrum Disorder. ScientificWorldJournal. 2013; 2013: 916178.

[6] Kushak RI. et al. Intestinal disaccharidase activity in patients with autism: effect of age, gender, and intestinal inflammation. Autism. 2011 May;15(3):285-94.

[7] Walker S. et al. Identification of unique gene expression profile in children with regressive autism spectrum disorder (ASD) and ileocolitis. PLoS ONE. 2013; 8: e58058.

[8] Fors S. & Fors MF. Is autism linked to migraine aura? Epidemiology. 2013 May;24(3):472-3.

[9] Casanova MF. The minicolumnopathy of autism: A link between migraine and gastrointestinal symptoms. Med Hypotheses. 2008;70(1):73-80.

----------

Tudor ME, Walsh CE, Mulder EC, & Lerner MD (2014). Pain as a predictor of sleep problems in youth with autism spectrum disorders. Autism : the international journal of research and practice PMID: 24497628

The eyes have it for autism?

Twenty-twenty @ Wikipedia 

There were a few reasons why I wanted to talk about the paper from Ikeda and colleagues* on ophthalmologic (eye) disorders noted in cases of autism.

First and foremost is my continued, unwavering, interest in all things comorbidity with autism in mind. Probably the next reason was the quite astonishing rate of ophthalmologic disorder reported by Ikeda, in "40% of patients with autism or a related disorder".

A final reason? Well without wishing to plug anyone, a friend of mine is making some waves in this whole area of vision and perception and he's talked quite a bit about the value of appropriate eye examinations for people with autism and lots of related developmental conditions, partly so as not to reflect yet another health inequality.

Indeed having very recently seen him lecture again and talk about problems with vision, face perception and descriptions of eyes, nose and mouth seemingly not being where they were supposed to be alongside faces morphing into animals and vegetables, I'm more convinced than ever about the value of looking at vision processing for some cases of autism and other conditions too.

During a past post titled: Do you see what I see? I talked about the sensory and perceptual link to autism and how even the proposed revisions to the DSM V description of autism spectrum disorders have recognised just how important issues with visual, auditory and other sensory modalities might be to cases.

The Ikeda paper is slightly different insofar as they were looking for specific issues with the eyes following a retrospective review of their caseload.

The main points:

• Based on a total cohort of 407 pediatric attendees diagnosed with an autism spectrum disorder at a medical centre, a chart review revealed that 154 had documentation pertaining to an ophthalmologic examination by a suitably qualified person.
• Most children were male, white and diagnosed with mild/moderate autism. Over half of the children (57%) "presented with an eye-related concern" in the majority noted by parents.
• Results: only 40% of the cohort were cooperative for recognition visual acuity testing (the well-know eye chart test) and of those other 60% not cooperative, upwards of a third were found to have an ophthalmologic disorder. 
• That original 40% quote used in the beginning of this post included a variety of ophthalmic issues, many of which I can't even pronounce never mind give you detailed information about. The main issues were: strabismus (irregular aligning of the eyes) (21%) and "significant refractive errors" including hyperopia (long-sightedness) and myopia (short-sightedness) as being primary.
• Other less commonly described conditions include: nystagmus (voluntary or involuntary eye movements) and ptosis (a drooping or falling of the eyelid), and something linked to the autoimmune neuromuscular condition myasthenia gravis.

There are a few quite important points of discussion to take from this work and some other related study. Aside from reiterating the percentage of children with autism with verifiable issues with their eyes and vision (40 PERCENT), the point made about those who were least cooperative during examination carrying quite a high burden of ophthalmologic disorder is a worrying trend. That coupled with other data from this study on the role of comorbid intellectual disability (ID) also potentially being a risk factor for eye problems, really does make you sit up and think. I'm not for one minute suggesting that those in the uncooperative category are somehow cajoled into undertaking an eye examination (indeed whether it would be possible) but certainly the onus might be on the clinician and other professionals to engage in a little creative thinking about how uncooperative participants can be more readily catered for.

There is also a question about the relationship between ophthalmologic disorders and some of the various perceptual issues reported in cases of autism. Again my lack of expertise in this areas shines through as I cannot readily say whether issues like strabismus might have the potential to impact on visual perception or indeed whether some kind of cognitive correction might be at work**. I assume like everything, there is probably going to be a degree of individuality to such eye issues and any adaption made or not where timing might also be an important factor.

Meandering (a lovely word!) through the other research on ophthalmologic disorders and autism, there seems to be snippets of information about for example, various genetic conditions manifesting eye disorders and autism (see this paper by Strömland and colleagues*** for example). Such papers pose some interesting questions about whether within the autisms spectrum (plural again), there may be cases whether eye anatomy and physiology might share underlying issues (genetics, epigenetic or environmental) with the appearance of autistic characteristics**** in the same way that some people get quite excited about facial phenotypes and autism.

"Just one last thing"... I also chanced upon an interesting case series described by Pineles and colleagues***** (open-access) on something called vitamin B12 optic neuropathy presenting in cases of autism. I've kinda touched upon vitamin B12 and methlymalonic acid (MMA) issues appearing in autism in a previous post. Pineles et al suggest that a deficiency in vitamin B12 might indeed be an important correlate for things like decreased visual acuity in some cases of autism. This in itself asks a few further questions about why such deficiency might be present and indeed whether there may be some good reasons to look more closely at vitamin supplementation (thinking back to Jim Adams' study) where certain eye problems might be present as a comorbidity.

Oh, and I assume you have seen this paper?

To close, always remember Apollo Creed and the Eye of the Tiger. Respect.

-----------

* Ikeda J. et al. Brief report: Incidence of ophthalmologic disorders in children with autism. J Autism Dev Disord. February 2012.

** Economides JR. et al. Perception via the deviated eye in strabismus. J Neurosci. 2012; 32: 10286-10295.

*** Strömland K. et al. Oculo-auriculo-vertebral spectrum: associated anomalies, functional deficits and possible developmental risk factors. Am J Med Genet A. 2007; 143A: 1317-1325.

**** Miller MT. et al. The puzzle of autism: an ophthalmologic contribution. Trans Am Ophthalmol Soc. 1998; 96: 369-385.

***** Pineles SL. et al. Vitamin B12 optic neuropathy in autism. Pediatrics. 2010; 126: e967-e970.

----------

Ikeda J, Davitt BV, Ultmann M, Maxim R, & Cruz OA (2012). Brief Report: Incidence of Ophthalmologic Disorders in Children with Autism. Journal of autism and developmental disorders PMID: 22350452

Gustational sensitivity and autism: a matter of taste

A sensory friend @ Paul Whiteley

Given the all-but accepted revisions for diagnosing autism spectrum conditions in DSM-5, there is one area of change to the Diagnostic & Statistical Manual entry that I think most people would be satisfied with: the overt inclusion of criteria surrounding unusual reactivity/interest to sensory input or sensory aspects of the environment.

Indeed whilst such sensory - perceptual issues in cases of autism have been known about for some years, many people (including me) have probably wondered to themselves why has it taken so long for this important factor for many people with autism to be included as part of the way the condition is assessed and diagnosed. Well now it is.. or at least will be fairly soon, minus any last minute changes that is.

Having said all that, just because such sensory issues are to be included in the diagnostic text, doesn't mean there is necessarily any consensus on what can be done about them as and when required, as per the recent policy statement by the American Academy of Pediatrics* (full-text).

I digress.

You could literally write a whole book about sensory issues in relation to autism - indeed some people have - but for this post, I'm zooming in on one part of that sensory issue dealing with taste or to use the proper scientific term, gustational sensitivity. I'm also sticking with the term 'sensitivity' in this post as per the assumption that some people on the autism spectrum seem to be particularly sensitive - hypersensitive - to certain types of taste and acknowledging also the opposing result, hyposensitivity to be also potentially present. I hasten to add that everyone, whether autistic or not, has their own individual tastes, likes and dislikes; taste is a very personal thing as per the various discussions on phenylthiocarbamide (PTC) perception which some may remember with regards to 'diagnosing' schizophrenia.

I remember about 15 years ago seeing gustational sensitivity in action with a child with autism. It was during a visit to see a child involved in one of our early research studies to talk to the parents about the food and feeding patterns they were seeing. The child was thirsty and mum brought a drink of cordial for the child. The drink seemed pretty concentrated and when asked about this, mum replied something along the lines of "XX always likes lots of cordial". Indeed not being a connoisseur of cordial drinks, even I could see that there was more cordial than water. That drink would probably have been pretty strong. Such observations have been accompanied by other anecdotal reports of preferences for strong tasting foods in cases of autism. I hasten to add however that not everyone with autism can be found tucking into a vindaloo curry at every opportunity for example, as per this abstract from IMFAR 2012.

Research into the gustational aspects to some cases of autism is still quite thin on the ground. It all really kicked off in the early noughties with this study** by quite a familiar name, Sally Rogers (and colleagues) who noted some interesting differences in parent reported sensory symptoms in children with autism. Taste and smell seemed to show the greatest difference in autism compared with cases of developmental delay, Fragile X syndrome and asymptomatic controls. Sample sizes were relatively small but the results were interesting.

Sue Leekam and colleagues*** (previously from Durham University just down the road from me) were among other groups to further categorise sensory issues in cases of autism; again, with specific reference to smell and taste. This paper by Bennetto and colleagues**** (full-text) put some 'meat on to the bones' with their characterisation of taste (sweet, salty, sour & bitter) perception in autism. I note also reference to a bit of a blast from the past with the use of 'Sniffin' sticks'.

A couple of more papers to mention then I'm finished. This paper by Lane and colleagues***** (including another familiar name, Manya Angley) looked at the possibility of subtyping children with autism on the basis of sensory processing including category headers like taste and smell. And finally, Tavassoli and Baron-Cohen****** add to the evidence base on issues with taste in adults with autism.

From this and other evidence, both scientific and from lay sources, it is fairly clear that at least some people on the autism spectrum seem to present with issues related to the sensory aspects of taste. I've not really talked about related issues such as smell, texture (food texture) and issues like pica which seem also to be related to gustation but nevertheless one needs to bear these in mind also.

The mechanism is still unclear as to why taste perception might be attenuated for some people, accepting that personal preference should not be excluded from any explanation and the realisation of some degree of inter-relatedness between the various senses we all use. I could speculate on one possible mechanism of effect although with the caveat that lots of processes will most likely be (variably) involved, including some recent suggestion of more physiological issues potentially present as per the article from Betalli and colleagues****** (which probably deserves a blog post on its own).

To finish, taste can mean more than one thing; and to show that I have very little of it when it comes to fashions and trends, and in honour of this years Eurovision... whatever it was, nul points for Jemini back in 2003. (Bravo to the Hump for not coming last).

P.S. The hedgehog picture was taken a few nights back outside my house as the little critter was foraging for some tasty earthworms in the garden.

-----

* Sensory Integration Therapies for Children With Developmental and Behavioral Disorders.
Section on complementary and integrative medicine; Council on children with disabilities.
Pediatrics. May 2012

** Rogers SJ. et al. Parent reports of sensory symptoms in toddlers with autism and those with other developmental disorders. JADD. 2003; 33: 631-642.

*** Leekam SR. et al. Describing the sensory abnormalities of children and adults with autism. JADD. 2007; 37: 894-910.

**** Bennetto L. et al. Olfaction and taste processing in autism. Biological Psychiatry. 2007; 62: 1015-1021.

***** Lane AE. et al. Sensory processing subtypes in autism: association with adaptive behavior. JADD. 2010; 40: 112-122.

****** Tavassoli T. & Baron-Cohen S. Taste identification in adults with autism spectrum conditions. JADD.  October 2011.

******* Betalli P. et al. Autism and esophageal achalasia in childhood: a possible correlation? Report on three cases. Diseases of the Esophagus. May 2012
DOI: 10.1111/j.1442-2050.2012.01358.x