Monday, 21 May 2018

The "experiences and perspectives of people who have severe autism and are minimally verbal"

I'm not going to formulate some sort of mammoth, long-read post on the paper by Christie Welch and colleagues [1] but I did want to bring their findings to your attention. My reasoning: the authors include a quite 'under-represented' group (see here) when it comes to the public view of the autism spectrum: those who "have severe autism and are minimally verbal."

Presenting the results of a qualitative study whereby "three memoirs written by youths who have severe autism and are minimally verbal were examined using inductive thematic analysis", authors observed several important themes emerging. Principal among them: "regarding the youths' concern that the way they are perceived from the outside does not match the people they are on the inside."

"These youths emphasize concepts of embodiment and physical control as central to their experiences of autism" said Welch et al, as the message seems to be that more should be done to 'tackle' these experiences and ensuring that sweeping generalisations about language use or non-use for example, are not seen as a proxy for cognitive and intellectual abilities. Just because someone cannot speak verbally, does not mean that they have nothing to say, and vice-verse.

I'm careful not to fall into the trap of 'autism severity' on the basis of the Welch findings, where terms like 'high' and 'low' functioning unduly simplify people in a binary fashion and seemingly without regard for the complexity of how autism affects various aspects of a person's life. I do however like the idea that more effort needs to go into things like the development of communication systems for those who are minimally verbal; both for clinical and research purposes but perhaps more importantly, day-to-day purposes, given also some catastrophic examples where communication issues have severely impacted on autistic lives (see here and see here).

And to the question of 'how common is 'minimally verbal' in the context of autism', well, another recent paper [2] has come up with an estimate: about a third...


[1] Welch C. et al. Autism inside out: lessons from the memoirs of three minimally verbal youths. Disabil Rehabil. 2018 Apr 23:1-9.

[2] Bacon EC. et al. Naturalistic language sampling to characterize the language abilities of 3-year-olds with autism spectrum disorder. Autism. 2018 May 1:1362361318766241.


Saturday, 19 May 2018

Temporal armchair diagnosing taken to the max: 'How Do We Explain ‛Autistic Traits’ in European Upper Palaeolithic Art?'

Headlines aplenty...
I'm not a great fan of 'armchair diagnosing' also known as 'diagnosing at a distance'. It's speculative, often inaccurate and runs the real risk of ruining lives.

The remote diagnosing of psychiatric and behavioural disorders is a particular bugbear of mine. It's something that autism research and practice in particular has had to endure for quite a few years, as a volley of historical figures for example, were revealed to be supposedly autistic. Such musings also add a temporal aspect to proceedings.

The paper published by Penny Spikins and colleagues [1] takes such temporal armchair diagnosing to the absolute max, with their contribution to the "long standing debate about the existence of ‘autistic traits’ in European Upper Palaeolithic art." Some of the media that followed these findings really went to town, as per headlines such as 'Ice Age cave artists were AUTISTIC' (capital letters were already included in the headline, not added by me - see above) and 'Autism shaped the art of survival'. Wow. All of that information from a few paintings and carvings...

So how did the the authors and the lay media arrive at such a conclusion?

Well, first and foremost Spikins et al did not say that the makers of such early art were 'autistic'. They focused on autistic traits, and in particular the idea of an "extreme local processing bias" or attention to detail trait that seems to accompany the diagnosis of autism (for some). Importantly, they note that: "Local processing bias is common in autism but also seen in individuals without autism" and "‘Autistic traits’ in Upper Palaeolithic art do not necessarily signify the work of an individual with autism." So, from the outset, we can probably do away with that rather sweeping [diagnostic evidence-free] media headline on Ice Age cave artists being autistic.

Quite a lot of the Spikins paper focuses on what's been observed - directly observed - in some of those diagnosed as being on the autism spectrum when it comes to artistic talent, which is then 'extrapolated' to such prehistoric artists. This includes some rather nice pictures drawn by individuals with autism who expressed a "marked local processing bias" compared with age-matched drawings from non-autistic individuals. We're also told that the use of the (very) famous 'are you autistic?' self-report screener that is the Autism Spectrum Quotient (AQ) by the authors, revealed that "individuals with a very high autism quotient (AQ) of 32 or above, which is taken as indicative of an autism spectrum condition within a population sample were statistically much more likely than neurotypical individuals (i.e. those with a lower AQ score) to have an interest in and experience of art outside of any school curriculum." 'Indicative of an autism spectrum condition'? Well, we'll see. And I still have some problems with what comes under the term 'neurotypical' too (see here).

Of course you can perhaps see the issue here. Take one block of 'evidence', some of it based on individual case reports and some of it based on an 'autism' screener that probably picks up an awful lot more than 'just autism' (see here and see here and see here for examples), correlate and correlate some more and hey presto, we reach the conclusion that the art must have been drawn by someone expressing an autistic trait or even someone who was autistic.

A testable hypothesis? No, it's not. We don't know who drew those paintings or made those carvings. We don't know anything about them personally and we certainly don't have any evidence about whether they expressed any significant autistic or any other kind of trait. For all we know, the paintings or carvings could also have been made by more than one person; a family or group effort if you like. We just don't know because, well, those artistic depictions were made thousands and thousands of years ago before the tools that help us record history were even a twinkle in the cosmic eye.

I don't want to come across as poo-pooing such 'observations' stressing how autistic traits are not necessarily a new thing because, in essence, I do think that some autistic traits have probably been with us from our earliest evolutionary times (see here). I say that on the basis that the traits of autism are not some 'magical' behaviours that are completely distant from the human experience; more likely they represent the extremes of what is typically seen in the general population at particular ages and stages and environments. Taking such logic back in an evolutionary sense, one can for example see how something like an 'attention to detail' could be a good survival skill if your life depended on it.

But I do think one has to be very, very cautious about such research and any 'feelgood' factor it might attempt to generate or put forward. Autism, as a clinical definition, only really came about in the last hundred years or so, and for many, any benefits derived from a 'marked local processing bias' have to be balanced with the possible downsides to such directed focus (e.g. increased rumination and anxiety). I'd also add in that the idea that Palaeolithic Art (or indeed, any kind of art) merely comes about as a result of traits that are noted in the context of psychopathology is a pretty dangerous path to take. It risks boiling down human efforts such as creativity and artistic skill to nothing more than diagnostic characteristics and feeds into narratives such as the "creativity is akin to insanity" headlines of not so long ago (see here). As I've said before, people are so much more than the labels they've received or the diagnostic term they identify with.

In short, Palaeolithic art is interesting and adds to our understanding of how we evolved. But it simply cannot provide an accurate window on any states and traits of those who created it...

To close, there's a wedding on today apparently. Best wishes to the happy couple. And not to make light of our Royal Family, but The Windsors TV show is absolute comedy gold (particularly Harry Enfield)...


[1] Spikins P. et al. How Do We Explain ‛Autistic Traits’ in European Upper Palaeolithic Art? Open Archaeology. 2018; 4: 262-279.


Friday, 18 May 2018

ALSPAC does... prenatal mercury exposure and autism or autistic traits

The ALSPAC - Avon Longitudinal Study of Parents and Children - mentioned in the title of this post is something of quite a regular feature on this blog (see here and see here for examples).

On this particular blogging occasion I'm heading into the findings reported by Jean Golding and colleagues [1] who utilised this fabulous research resource to examine whether "prenatal exposure from total maternal blood Hg [mercury] in the first half of pregnancy is associated with the risk of autism or of extreme levels of autistic traits." They concluded that there were "no adverse effect of prenatal total blood Hg on autism or autistic traits provided the mother ate fish."

OK, mention of the heavy metal mercury in the context of autism and/or autistic traits can be a touchy subject for some. I'm talking about the various 'discussions' that have taken place both in the lay and peer-reviewed science arenas concerned with the exposure patterns relevant to mercury in the context of autism (see here and see here). This, on the basis that mercury exists in several 'forms', and those different forms have different potential exposure routes.

Golding et al relied on some of the gold-standard analytical methods for the analysis of whole blood Hg collected in the most part "at < 18 weeks gestation": "inductively coupled plasma dynamic reaction cell mass spectrometry (ICP-DRC-MS)." Variations on this method - ICP mass spectrometry - have been previously reported on in the context of mercury and autism research (see here and see here). Alongside, they looked at measured levels of mercury in relation to various behavioural and other variable groupings: "(1) direct comparison of 45 pregnancies resulting in children with diagnosed autism from a population of 3840, (2) comparison of high scores on each of the four autistic traits within the population at risk (n~2800), and (3) indirect measures of association of these outcomes with proxies for increased Hg levels such as frequency of fish consumption and exposure to dental amalgam (n > 8000)." They however cautioned that: "Although we accounted for several important confounders which are relevant to Hg levels and autism, the possibility of unmeasured confounding cannot be ruled out." I can think of one potential confounder that was not seemingly included in their list outside of fish consumption and dental amalgams but ho-hum...

Alongside their overall 'no relationship' results, a few other details are noteworthy. First: "all correlations indicated that with increasing levels of [maternal] mercury, the signs of autism [in offspring] were slightly less, but none were statistically significant." Interesting idea - higher maternal levels of mercury during pregnancy 'correlates' with 'less' autistic traits in offspring in childhood - but to reiterate, not statistically significant. Second was that 'provided the mother ate fish' detail attached to the main findings. So: "we have shown a differential relationship between the social cognition trait and prenatal Hg exposure, such that there was a significant difference in apparently protective effects contingent upon whether the mother ate fish." The authors opine as to what it is about fish consumption that might "counteract any possible adverse cognitive and behavioral differences that may be caused by prenatal exposure to Hg" including "the beneficial components of fish such as the omega-3 fatty acids, iodine, and vitamins D and B2." This in the context that omega-3 fatty acids have some research form in relation to autism (see here) as does the sunshine vitamin/hormone that is vitamin D (see here).

One has to be slightly careful with the Golding results given the focus on prenatal exposure, and prenatal exposure at only one early point in pregnancy, as well as also not actually looking at mercury levels in the children themselves. The current results say nothing for example, about any possible direct or acquired role for mercury in relation to autism as per other findings published during the same period [2]. Neither do they offer any additional information on the idea that exposure issues to such heavy metals may be only one part of the story, and that the biological processes involved in removing such heavy metals may be somehow perturbed in relation to some autism (see here).

But... set within the idea that prenatal mercury exposure may be linked to the 'etiology' of at least some autism, the Golding findings represent pretty strong evidence suggestive of no connection.

Music to close, and could I recommend the soundtrack to Sonic 3 while you work?


[1] Golding J. et al. Prenatal mercury exposure and features of autism: a prospective population study. Molecular Autism. 2018; 9: 30.

[2] Qin YY. et al. A comparison of blood metal levels in autism spectrum disorder and unaffected children in Shenzhen of China and factors involved in bioaccumulation of metals. Environ Sci Pollut Res Int. 2018 Apr 22.


Thursday, 17 May 2018

KPAX002 for Chronic Fatigue Syndrome part 2: controlled study says no

KPAX002 mentioned in the title of this post refers to "a mitochondrial modulator technology platform" according to the manufacturer that includes a low dose of methylphenidate combined with various nutrients designed to impact on mitochondrial function. Within the context of chronic fatigue syndrome (CFS) also known as myalgic encephalomyelitis (ME) (but not necessarily accurately so!), there is some preliminary research history suggesting that KPAX002 might be something to look at for intervening in some of the disabling characteristics of CFS/ME (see here). This, on the basis that mitochondria in particular, might be something quite important to at least some cases (see here and see here).

The fly in the scientific ointment?

Well the results of the "phase 2 randomized, double-blinded, placebo-controlled trial" on KPAX002 published by Jose Montoya and colleagues [1] that, from an intention-to-treat point of view, reported no significant statistical difference in self-reported group scores of fatigue and other measures between active treatment and a placebo. In keeping with the phase 2 label attached to the trial - looking at both initial clinical results and also any side- or adverse effects - authors reported no statistically significant difference in the frequency of reported adverse effects between KPAX002 and a placebo over the 12 weeks of study. First, do no harm and all that.

The Montoya paper is open-access so readers can see for themselves how things were done and the details of the results. I however, want to highlight a few points that I thought were important:

First, the authors acknowledge the "unexpectedly positive results" observed the last time around [2] that led to this more rigorous trial. Personally, I don't think there was anything too unexpected about those pilot study results, given the methodological issues typically associated with a pilot study. Y'know, a small un-blinded participant group taking part in a trial using a preparation that they probably will have been told *might* affect various symptoms they experience or themselves possibly 'exposed' to other anecdotal reports of good effects. That and no control group, no placebo included and importantly, no objective measure of fatigue (a real issue when it comes to quite a bit ME/CFS research) and well, I'd be surprised if something significant didn't come up during the initial findings. And just in case you think I'm being all 'high-and-mighty' about this, I've published using the same type of pilot study methodology before, including some of the same inherent issues (see here).

Second, I'm a little bit disappointed that the authors weren't more forthright in how the results weren't statistically significant on any and all measures included for study. I say this on the basis of both the commercial take on the results (see here) and also sentences like: "The two groups demonstrating the most robust response to KPAX002 were subjects with more severe ME/CFS symptoms at baseline (P=0.086) and subjects suffering from both fatigue and pain (P=0.057)." Both those p-values (p being a measure of statistical significance) are above the [currently] recognised threshold for p equal to or less than 0.05, yet are listed as a 'robust response'. Even more, throughout the paper I note the words 'trend in favor of' being used, which some people might translate as being 'well, they were nearly statistically significant results'. I say this also bearing in mind that the final participant numbers - KPAX002 use = 48 and placebo = 57 - are not exactly facets of what one would call an under-powered study. I'm probably being a nit-picker here but like it or not, the [current] rules of science are the [current] rules of science.

Finally, once again, I note that under the heading 'Disclosure of conflict of interest', the word 'none' appears as per the last research occasion [2]. Personally, and with no malice intended, I would have listed the detail that at least one of the authors is an employee of the manufacturer of KPXA002 given the affiliation details and email address for further correspondence provided on the paper. Again, it's a small detail but one that should nevertheless be acknowledged. I would have also like to have seen a little more on who funded the trial too and especially who funded the provision of the KPAX002 supplement for trial purposes. I reiterate that there is no malice is intended in saying that, but readers require such details.

I don't want to come down too hard on these results because it's obvious that quite a bit of work has gone into their production. I'm also not closing the door on the idea that future research with a more targeted group with ME/CFS might not produce something a little more statistically significant with regards to KPAX002. But for now, the answer must be that controlled study of the formulation did not meet clinical endpoints in a statistical sense, and hence KPAX002 cannot be said to be superior to placebo for CFS/ME. With all the setbacks that the label(s) ME/CFS has had to endure down the years with regards to the 'psychobabble' explanations (see here) and other 'eureka' moments (see here), the Montoya findings are bad news for patients yet again. But, they also should represent a further call to re-double research efforts; particularly when it comes to the biology of the condition(s) and onward the acceleration of research for interventions for this quality of life draining condition (see here).


[1] Montoya JG. et al. KPAX002 as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a prospective, randomized trial. Int J Clin Exp Med 2018;11(3):2890-2900

[2] Kaiser JD. A prospective, proof-of-concept investigation of KPAX002 in chronic fatigue syndrome. Int J Clin Exp Med. 2015 Jul 15;8(7):11064-74.


Wednesday, 16 May 2018

The headline: "One in nine young people in Scotland have attempted suicide"

I have to say that I drew a sharp intake of breath when I read the media headline titling this post - "One in nine young people in Scotland have attempted suicide" - based on the findings reported by Rory O'Connor and colleagues [1]. The idea that, from a sample of some 3500 young people in Scotland, some 10% and 15% of respondents to the questions: "Have you ever made an attempt to take your life, by taking an overdose of tablets or in some other way?’ and ‘Have you ever deliberately harmed yourself in any way but not with the intention of killing yourself? (i.e. self-harm)" answered in the affirmative, seemed pretty important. Not least with the question 'why?' in mind.

OK, media headlines aside, the O'Connor findings require some dissection. The reasoning behind studying this issue was not only to look at the very complicated topic of suicide in a part of the UK (Scotland) that authors write "has a higher suicide rate than England", but also to try and understand how non-suicidal self-injury (NSSI) or non-suicidal self-harm (NSSH) presents in young adults and whether there is something important linking NSSH and suicidal thoughts and/or attempts.

The participant group was drawn from "a representative sample of young people aged 18–34 years from across Scotland" who were recruited to the Scottish Wellbeing Study. Lots of measures were completed by participants as part of the wider study initiative but we are told that "only the prevalence of NSSH and suicide attempts information is reported" in the O'Connor article on this occasion. I might also add that participants were compensated to the tune of £25 (pounds sterling) for their time and participation.

Alongside those headline findings on self-reported attempted suicide and self-harm, a few other important trends were observed. So: "More than 20% reported lifetime suicidal thoughts, 2.4% reported that they last thought about suicide in the past week and 10.4% reported they last thought about suicide in the past 12 months." Around 6% of respondents reported that they had both attempted suicide and also engaged in self-injury suggesting that professionals should "routinely enquire about history of self-injurious behaviour, especially as past behaviour is such a strong predictor of suicide." Also: "Earlier age at NSSH or suicide attempt onset was associated with more frequent lifetime NSSH and suicide attempts." And finally: "The prevalence of NSSH and suicide attempts was significantly higher among those classified as unemployed... and economically inactive... compared with those who were employed." Age, societal and environmental factors seem to play some roles too.

Then to another important set of questions: (a) why? and (b) what can be done to reduce these headline-grabbing statistics? Well, there are no easy answers to such questions I'm afraid. The authors do note that: "From a public health perspective, the unemployment and economic inactivity findings are noteworthy" and perhaps suggest that there are some modifiable variables that could influence suicidal thoughts and/or actions focused on getting people into employment and the benefits that this brings (wide-ranging benefits by all accounts). But this probably only covers one side of the issue, as discussions inevitably turn to what role psychiatric and/or behavioural comorbidity might play in such reporting (see here and see here and see here) and whether there may be a need for (a) something like enhanced screening for suicidal thoughts or other 'risks' among selected populations and/or (b) the [careful] use of 'preventative' strategies in such cases (see here and see here). I say all that accepting that diagnoses around mental health probably play an important role in suicide-related behaviours but are not necessarily a pre-requisite...

As always, there is always someone to talk to if needed...


[1] O'Connor RC. et al. Suicide attempts and non-suicidal self-harm: national prevalence study of young adults. BJPsych Open. 2018; 4: 142-148.


Tuesday, 15 May 2018

Higher autistic traits in those attending transgender health services don't necessarily mean autism

There are some key messages to take from the findings reported by Anna Nobili and colleagues [1] following their examination of "self-reported autism spectrum quotient-short (AQ-short) [scores] in a transgender clinical population." Not least that when compared with a control group - "cisgender individuals" - there "were no significant differences in the number of people who presented with scores suggesting a possible diagnosis of ASC [autism spectrum condition(s)]."

OK, before heading further into the Nobili findings I think it might be worthwhile setting the scene a little. So, for quite a while now there has been some increasing interest in how autism or at least some of the traits of autism, *might* be over-represented among those presenting with gender dysphoria (see here). Gender dysphoria, according to the UK NHS Choices website is "a condition where a person experiences discomfort or distress because there's a mismatch between their biological sex and gender identity." Allied to other peer-reviewed research looking at gender identity [2], sexual preferences in the context of [some] autism (see here), and combined with quite a sweeping *theory* talking about an 'extreme male brain' in the context of autism (see here), and well, let's just say some speculation about a link between some autism / autistic traits and elements of gender and sexuality has been noted. And indeed, continues to be noted [3]...

Nobili et al - including one author who is rather central in autism research circles to the promotion of that extreme male brain theory - examined AQ responses in some 650 matched pairs (transgender matched with cisgender). Among the transgender participants: "A total of 260 people (39.6%) in each group were assigned female at birth whilst 396 (60.4%) were assigned male." It's worthwhile noting that AQ is a self-report questionnaire, and whilst heralded in several quarters as a good 'are you autistic?' screener, there are some people - including me - who have some reservations about it's 'universal' usefulness to just autism (see here and see here for examples). I'll come back to this shortly...

As per the opening paragraph to this post, the numbers of participants "indicating possible ASC caseness" did not differ significantly between the groups. So, around 33% of the cisgender control group hit a score of 70 or more on their self-report responses to the AQ compared with 36% in the transgender group. The authors did detect a statistically significant difference in possible caseness when looking at those assigned female at birth in the transgender group but not for males. A similar finding has been noted in other independent studies [4]. Nobili and colleagues however concluded that their findings were in line with other observations in adults in that: "there is no evidence of increased rates of autism in transgender populations as a whole."

Going back to my reservations around the AQ as an exclusive autism screener, I also noted something important reported by Nobili and colleagues: "High AQ scores may not be indicative of the presence of an autism spectrum condition as the difference between groups mainly related to social behaviours; such scores may be a reflection of transgender people’s high social anxiety levels due to negative past experiences." I was really intrigued by this finding and interpretation, particularly in light of other recent peer-reviewed speculation by Jack Turban [5] who suggested that: "ASD [autism spectrum disorder] symptoms [in transgender youth] may represent social deficits that are secondary to social stress and deprivation, as transgender youth suffer high rates of peer and family rejection." On a previous blogging occasion, I've also discussed research suggesting that something like a generalised anxiety disorder (GAD) may 'inflate' responses/scores on the AQ (see here). Given that anxiety is an all-too-often bedfellow accompanying a diagnosis of autism, I'd be interested to see quite a bit more study on this topic in the context of AQ use. Y'know, perhaps alongside some more formal measures of anxiety both in relation to autism and also more readily pertinent to the subject matter analysed by Nobili et al. And, outside of just anxiety, other clinical features/conditions might also be thrown into the research mix [6]. Insofar as the idea that mental health may also be a topic requiring more focus in respect of the transgender population, I'll bring to your attention some other recent research by Becerra-Culqui and colleagues [7] on this point.

There is a further scheme of work to follow in this area, and I'll be interested to see what further results turn up, particularly with regards to females assigned at birth with gender dysphoria. And since I've mentioned the AQ and (once again) my reservations, I'll direct you to another paper published in the same journal at roughly the same time as the Nobili findings, where the AQ was again 'implied' as being equal to the presence of autistic traits [8]. And yet again, another example where one has to be very, very careful about making that 'exclusively autistic traits' link...


[1] Nobili A. et al. Autistic Traits in Treatment-Seeking Transgender Adults. J Autism Dev Disord. 2018. April 13.

[2] Cooper K. et al. Gender Identity in Autism: Sex Differences in Social Affiliation with Gender Groups. J Autism Dev Disord. 2018. April 28.

[3] van der Miesen AIR. et al. Prevalence of the Wish to be of the Opposite Gender in Adolescents and Adults with Autism Spectrum Disorder. Archives of Sexual Behavior. 2018. May 7.

[4] Vermaat LEW. et al. Self-Reported Autism Spectrum Disorder Symptoms Among Adults Referred to a Gender Identity Clinic. LGBT Health. 2018 May 9.

[5] Turban JL. Potentially Reversible Social Deficits Among Transgender Youth. J Autism Development Disord. 2018. May 12.

[6] Lugnegård T. et al. Asperger syndrome and schizophrenia: Overlap of self-reported autistic traits using the Autism-spectrum Quotient (AQ). Nord J Psychiatry. 2015 May;69(4):268-74.

[7] Becerra-Culqui TA. et al. Mental Health of Transgender and Gender Nonconforming Youth Compared With Their Peers. Pediatrics. 2018. April 16.

[8] Loureiro D. et al. Higher Autistic Traits Among Criminals, But No Link to Psychopathy: Findings from a High-Security Prison in Portugal. J Autism Dev Disord. 2018. April 12.


Monday, 14 May 2018

How much does it cost to assess a child for autism?

In answer to the question titling this post - 'How much does it cost to assess a child for autism?' - the results published by Mark Galliver and colleagues [1] provide some important findings, at least pertinent to the diagnostic experience here in Blighty.

Authors concluded that assessment for autism "typically takes 13 hours of professional time" and costs somewhere in the region of "£650–£1000 ($975–$1500) per child." Importantly too, the staff costs of around £800 per assessment do not cover "costs of intervention, parent psychological education, investigation and assessment and management of comorbidities."

I appreciate that talking about 'financial costs' associated with autism (assessment) is not a topic everyone will enjoy discussing. Much like other 'bean counter' discussions (see here and see here), everyone [rightly] aspires to providing this, that and t'other to improve facilities with regards to diagnosis and indeed, post-diagnostic services. The financial reality however, particularly in these days of continued austerity, is that such services are often under-funded, under-resourced and headlines including words like 'two year wait' for diagnostic assessment (see here) are not uncommon. People rightly get angry about this but the services themselves and the people delivering them are not to blame.

Galliver et al started out with some important premises. First, there are a growing number of referrals for assessment for autism. Second, such an 'increase in demand' naturally puts greater pressure on diagnostic services resulting in longer waiting times. Third, there are recognised pathways for referral and assessment for autism, but the resourcing of such pathways might not always be optimal either in form or amount. All of this is set in the context of the National Health Service (NHS) providing clinical and medical services here in the UK, free at the point of need and all that.

Researchers therefore decided to ask various local child development centres (CDC) in England about their diagnostic experiences in terms of resources and costs. Various questions were asked pertinent to the pathway used to deliver assessments and professional time typically allocated to said assessments. They report on responses from 60% of the CDC - no, not that CDC - initially questioned, covering a range of services in different geographic locations.

I don't need to rehash the financial findings again. I will however mention a couple of associated points that might be relevant. First, autism rarely exists in some sort of diagnostic vacuum (see here). The authors make the point that their figures did not cover the "investigation and assessment and management of comorbidities" something important in these days of greater realisation of 'autism plus' and ESSENCE (see here). In this respect, the figures provided by Galliver are likely to be an underestimate of the true financial cost of assessment.

Second, the issue of growing numbers of referrals and "increasing demand" for diagnostic services is highlighted in various parts of the reported findings. I have my own opinions as to why this is happening (see here and see here) but the one thing that is becoming increasingly clear is that such an increase is probably not just due to better recognition of autism or issues such as diagnostic switching (see here and see here). Yes, these points were probably relevant about 10-20 years ago, but now, I'd have to say not as much as [clinical] awareness must have peaked by now. At some point the question of 'why the increase' is going to have to be properly faced up to if it's not going to be all about just assessing and diagnosing in a catch-up sense.

Finally, although more funding would help, such demands on assessment services are probably not going to be met by just 'throwing a few quid' at them. The NHS is moving with the times in other areas; and the rise and rise of technology to potentially assist with autism assessments is becoming increasingly important. I'm thinking about work such as that being done at the Duda-Wall laboratory (see here and see here) where technology such as machine learning is being used in the context of autism screening. And things like autism screening triage via YouTube (see here) *might* also [eventually] become more commonplace. Technology can potentially ease the burden on assessment services.

Whatever does or does not happen as a result of findings such as those by Galliver and colleagues, the underlying messages are that autism assessment is (a) not an inexpensive process and (b) either significant funds need to be poured into the service or services need a revamp on the basis of current funding schedules and as national finances allow. Either way, I don't see assessment waiting times improving much in the near future despite the important work provided by our fantastic NHS and the desperate need for timely autism assessment.

And I've not even mentioned about adult diagnostic services...


[1] Galliver M. et al. Cost of assessing a child for possible autism spectrum disorder? An observational study of current practice in child development centres in the UK. BMJ Paediatr Open. 2017 Nov 30;1(1):e000052