"an urgent need for autism treatment pathways in mental health services"

Of the many and varied important clinical and research areas connected to a diagnosis of autism or autism spectrum disorder (ASD), the provision of services to manage and treat mental health issues in the context of autism must rank high on the list of needs and priorities.

It's with this in mind that I turn my blogging attention to the findings reported by Louise Camm-Crosbie and colleagues [1] and their findings observing three important themes around the issue of mental health and (adult) autism: "(1) difficulties in accessing treatment and support; (2) lack of understanding and knowledge of autistic people with co-occurring mental health difficulties and (3) appropriate treatment and support, or lack of, impacted autistic people’s well-being and likelihood of seeing suicide as their future." All of this is set within the idea that various mental health issues seem to be over-represented when it comes to autism (see here and see here and see here  and see here for examples) and the lack of support and management of such issues can sometimes have devastating consequences (see here).

So: "In partnership with a steering group of autistic adults, an online survey was developed to explore these individuals’ experiences of treatment and support for mental health problems, self-injury and suicidality for the first time." The partnership bit ties in with the increasingly discussed 'participatory research' theme in some autism research circles (see here), where stakeholders are seen as partners driving a study or research agenda rather than just passive participants who are the topic of a particular study. The 'online survey' bit also continues a theme where technology means that participation doesn't mean having to be questioned face-to-face. Said survey was completed by 200 autistic adults ("122 females, 77 males and 1 unreported") and results covered an array of different issues, including some previously discussed by some authors on the Camm-Crosbie paper on other [important] research occasions (see here).

Alongside those three themes that emerged from the data, researchers also reported that: "In relation to treatment for mental health, self-injury and suicidality (n = 197), 164 participants (83.2%) were currently receiving/had previously received treatment, 29 participants (14.7%) needed/currently needed treatment but had not received it and 4 participants (2%) did not need treatment." As you can see from the figures, particularly that 2% not needing treatment, mental health issues (including self-injury and suicidality under that banner) are very much present when it comes to a diagnosis of autism, at least in this cohort.

Various other observations were reported on in the study; many of them pertinent to the another important theme coming from the article: "although participants reported experiences of being excluded from mental health services, with potentially tragic consequences for their well-being, there are also examples of participants benefitting from tailored support and treatment, which had a positive effect on their well-being." In other words, look to the individual and their wants, needs and wishes, and adapt accordingly. Not exactly rocket science.

So, what can be done to help ameliorate the issues identified by Camm-Crosbie et al and ensure that suitable 'tailored support and treatment' is offered? Well, the short answer is investment. Monetary investment. I could go for the 'low-hanging fruit' by saying that awareness of mental health issues in relation to autism needs to be improved among professional bodies, but the core material to aid such awareness is money. I could also go on about further dedicated resources needing to be put in place to support autistic adults (and children) with mental health issues, but the core material to get such resources is, once again, money. Money. And unfortunately in these austere times that we continually live in, where social care funding in particular, seems to have been cut to the bone, money for such issues is seemingly in short supply. Indeed, it seems that only when a crisis point is reached by an individual is anything actually done about something like mental health issues. And with all due respect to the hard working people who work in the mental health sector, after a crisis has been reached and 'managed', normal service seems to resume until another crisis comes along. The reason? Money yet again. The solution: put more money into this important issue. It will definitely help.

And whilst the focus of the Camm-Crosbie paper was adults with autism "without co-occurring intellectual disability", I also have to ask the question: what about those autistic people who are not able to complete online surveys and their mental health needs? Who's taking an interest in them? Are they, yet again, the understudied and underrepresented in autism research (see here)? There may be quite a bit to see [2]...

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[1] Camm-Crosbie L. et al. 'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism. 2018 Nov 29:1362361318816053.

[2] Baudewijns L. et al. Problem behaviours and Major Depressive Disorder in adults with intellectual disability and autism. Psychiatry Res. 2018 Dec;270:769-774.

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

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

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

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

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

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

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

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

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

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Constipation in kids with autism: financial as well as health implications

I've always be a little perplexed about the response to gastrointestinal (GI) issues appearing alongside autism. Time after time after time, the peer-reviewed science domain serves up evidence that both functional and more pathological bowel issues are over-represented in autism (see here and see here for examples) and cause considerable suffering. Yet some parts of the lay and research community seemingly 'gloss over' such findings. It's almost as if the acceptance that 'some' autism seems to be 'bowel-related' would shatter some people's view of autism. Perhaps it's also because there would have to be some [partial] acceptance of other related uncomfortable findings too (see here)...

The findings reported by Brandon Sparks and colleagues [1] continue the theme that functional bowel issues such as constipation are part and parcel of some autism. And not only do they have often severe health implications for the person concerned, but there may also be wider economic implications too. So, researchers concluded that: "ED [emergency department] visits by children with ASD [autism spectrum disorder] were more likely to be constipation-related compared with visits by children with other chronic conditions or children with no chronic conditions." Further: "Hospital charges were higher in children with ASD than in those without chronic conditions."

Based on data derived from the Nationwide Emergency Department Sample (NEDS), a US initiative that records diagnostic trends in ER (also known as Accident & Emergency here in Blighty) visits, authors looked for those with and without a diagnosis of autism (ASD). They observed that constipation was an important variable in those ER visits when it came to autism and continued to be important when ER visits turned into hospital admissions. They conclude by saying that there may be a need for "developing more effective outpatient therapies for constipation in children with ASD."

Constipation might not sound like a condition that requires an ER visit. But if and when it does, I guess you could probably say that it's something quite serious. Just as reports in relation to those with a learning disability have highlighted how constipation is (a) over-represented, and (b) has actually been cited as a cause of death (see here), so perhaps you can see why there should be a lot more urgency in this area of the autism research and practice landscape.

I added in the 'financial as well as health implications' bit to the title of this post to stress how, even if someone chooses to ignore the pain and physiological effects that constipation can cause, such symptoms are also placing quite a burden on resources and finances. I personally don't much like the idea of talking too much about 'how much autism costs' but if that's the only way to make people listen and actually do something about bowel issues in relation to autism, then I'm quite willing to continue to talk money and strains (no pun intended) on resources...

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[1] Sparks B. et al. Constipation in Children with Autism Spectrum Disorder Associated with Increased Emergency Department Visits and Inpatient Admissions. The Journal of Pediatrics. 2018. June 1.

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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...

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[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

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"Spending constraints" a.k.a austerity and a mortality gap?

I try not to be too political on this blog given the focus on peer-reviewed science and my notable lack of political interest or motivation. It is however difficult to completely separate science and politics from each other given the world that we live in. A world that still commonly uses the term 'austerity' quite a few years after 'the crisis', alongside a realisation that behind headlines on the continued drive(s) towards 'fiscal security' and 'balancing the books' there are inevitably going to be winners and losers.

The paper by Jonathan Watkins and colleagues [1] highlights some of the extreme 'not winners' potentially stemming from the "relative constraints in public expenditure on healthcare (PEH) and social care (PES)" here in Blighty over recent years. They concluded that: "Spending constraints between 2010 and 2014 were associated with an estimated 45 368 (95% CI 34 530 to 56 206) higher than expected number of deaths compared with pre-2010 trends." Further, that if current trends continue in relation to funding "approximately 150 000 additional deaths may arise between 2015 and 2020." Cue the sharp intake of breath as words such as 'economic murder' have been banded around in the popular press discussing this research (see here).

I'm not going to go into all the details of the Watkins findings on this occasion. The data for the study was derived from various public databases in relation to population mortality, spending on health and social care and related variables. I don't doubt that as per other debates on the 'weekend effect' for example, different people with different mindsets might arrive at different conclusions based on such data. 'Lies, damn lies and statistics' is a phrase that springs to mind. With my very rudimentary reading and understanding of the Watkins data, I can't however see any obvious flaws in their methods or logic behind their results; aside that is from remembering that correlation does not always equal causation. Others have voiced similar sentiments (see here).

"By setting, deaths at care homes and at home contributed most to the observed ‘mortality gap’, while hospital mortality was lower than expected." The authors specifically attribute such data to the gap between spending on social care vs. spending on health care; also noting that "the recent drive to move patients with poor prognoses and who have reached their ceiling of care away from the hospital environment to care homes or their own homes may have contributed to this." One interpretation of this is that those who are elderly and/or vulnerable placed outside of the hospital environment are perhaps disproportionately being burdened with the effects of austerity.  And one possible solution? Well: "Our study suggests that the number of NHS-qualified nurses is the strongest tested mediator of the relationships between spending, and care home and home mortality." One solution but not the only solution.

With a UK budget announcement set for later this week, I wonder if the Watkins findings might figure in relation to the suggestion that "a cumulative spending increase of approximately £25.3 billion would be required to close this gap across health and social care by 2020/2021, equating to around £6.3 billion annually." Yes, those are some quite staggering sums of money, but at the end of day what is to be valued more: balancing the books or plugging quite a significant mortality gap? (and even some of our elected officials seem to be interested in this debate).

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[1] Watkins J. et al. Effects of health and social care spending constraints on mortality in England: a time trend analysis. BMJ Open 2017;7:e017722.

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Sickness and disability benefit and mental illness in the UK

"Mental disorders have become the most common cause of receiving benefits, with the number of claimants rising by 103% from 1995 to 1.1 million in 2014. Claimants with other conditions fell by 35%."

The findings reported by Sebastião Viola & Joanna Moncrieff [1] (open-access) provide stark evidence of both how prevalent mental illness is these days, and the financial implications of such illness to both the individual and more generally society.

Set within the context of some pretty inflammatory language being used to describe those claiming benefits (see here) and the continued saga that is austerity in the UK (see here), I would hope that the Viola/Moncrieff results might serve to further illustrate the increasing parity (of esteem) between physical illness and mental illness insofar as the burden they can both inflict. For too long now, the focus on physical health has perhaps been at the expense of mental health (see here). I'd also hope that such findings might also serve to help 'de-stigmatise' some of the circumstances leading someone to claim for such benefits.

Drawing on data "from the Department for Work and Pensions [DWP] regarding numbers of claimants of all sickness and disability-related benefits in England, Scotland and Wales" (UK), researchers looked at the 'significant' causes for claims recorded. For those not familiar with the UK welfare system, some background can be found here. Taking into account how the benefits system has changed somewhat over recent years, researchers reported on various trends noted from the data including those related to long-term benefit claims (more than 5 years) and claims according to age, gender and regional distribution.

Results: the general trend in claiming sickness benefit was one of a decline between 1995 and 2014. When however, breaking down the statistics according to "causal categories of medical condition" the authors reported that 'mental disorders' were by far, the most common cause of claims awarded: "rising by 103.4% over the period examined to over a million in 2014 (from 571 600 in 1995 to 1 136 360 in 2014)." Claims based on the previous most common category - musculoskeletal disorders - dropped by about 40% over the same period. The authors note: "By 2014, almost half of claimants were claiming benefits for a mental disorder, up from 21.4% in 1995 to 46.5%."

Analysis of long-term claimants also showed a similar trend insofar as the impact of mental illness. So: "Numbers of long-term claimants for mental disorders rose by 87.4% from 346 770 in 2000 to 649 990 in 2011 and numbers with all other conditions rose by only 0.79% (from 826 910 to 833 480)." Trends by gender (sex) suggested an equalisation between males and females. The authors also noted some geographic changes in the data: "The proportion of mental disorder claims was highest in London and southern regions in 1995, and in Scotland in 2014." Interestingly too: "areas traditionally associated with industrial decline, such as Wales, the North East and the North West, did not show particularly high proportions of mental disorder claims compared with other areas."

Drilling down into the details of what constituted a 'mental illness', the authors reveal some interesting trends in relation to claims. Depression or depressive disorder is consistently shown to be the most frequent 'category of disorder' (circling around the 40% mark of total mental illness claimants for 1999 and 2014). Anxiety and related conditions is the second most frequently cited category; between them and depression capturing 65-75% of the total claims with mental disorders mentioned. The authors also make an interesting point about claims appearing under the category of 'learning disability' including "Pervasive Developmental Disorder" (PDD). Although the total number of claims increased in this category - ~87,000 in 1999 and ~125,000 in 2014 - there was only a small change registered as a percentage of the 'total mental disorder claimants' between the years. I know some people might um-and-ah about the descriptors used to code PDD and other developmental disorders (including use of the words 'mental retardation' in the same category) but those are the codings specifically used by the DWP not my own.

Viola & Moncrieff provide some important discussions about their findings and the context they are presented in. The ideas, for example, that "regions of high unemployment and economic inactivity" or "the recent economic recession" somehow correlate with claims for state benefits as a result of mental illness don't generally hold true on the basis of the presented data. I would however soften those words by pointing out that austerity may very well exert a psychiatric toll on a person if one accepts that the quite alarming suicide statistics we've seen recently (see here) are not solely down to just social factors.

"Evidence from the UK suggests a modest increase in the reported prevalence of common mental disorders since the early 1990s, but this is not large enough to account for the increase in disability claims, and may represent increasing recognition and identification of such disorders as much as their actual occurrence." With this statement, the authors tap into how stigma associated with mental health problems might be decreasing, as more people feel comfortable talking to others about their issues and how this might be reflected in the claimant figures. They also take a bit of a jab at the 'effectiveness' of pharmacotherapy used to treat/manage such mental health issues: "The increasing use of all types of drugs for mental disorders, and especially antidepressants, in England since the 1990s does not appear to have ameliorated the rising trends in disability claims for these conditions." I'll say nothing more on this point.

The final words of this rather long post are reserved for what potentially might impact on disability benefit claims in the context of mental health issues, specifically with employment in mind. The authors note that "the provision of suitable employment opportunities where health and mental health-related limitations are accommodated" might be one model to look to with further research required. I'd agree that a caring workplace should be an important part of the strategy to reduce the numbers of claimants and provide the various positive opportunities that accompany work. I am however a little cautious about any 'one-size-fits-all' approach to accomplishing this, as lessons from specific labels covered by the Viola/Moncrieff paper come to mind (see here). And on the topic of employment and autism, I might also divert your attention to a much needed piece on why we perhaps shouldn't get too excited about 'autism employment initiatives' just yet (see here)...

Finally, although not wishing to mix science and politics too much, the recent news that a certain gentleman (quiet man?) has quit his post here in Blighty because of "pressure to make cuts to disability benefits" seems to be oddly relevant to discussions today.

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[1] Viola S. & Moncrieff J. Claims for sickness and disability benefits owing to mental disorders in the UK: trends from 1995 to 2014. British Journal of Psychiatry Open. 2016; 2: 18-24.

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Viola, S., & Moncrieff, J. (2016). Claims for sickness and disability benefits owing to mental disorders in the UK: trends from 1995 to 2014 British Journal of Psychiatry Open, 2 (1), 18-24 DOI: 10.1192/bjpo.bp.115.002246

Parents lived experience of an offspring autism diagnosis

I recently happened upon the paper by Emilia Carlsson and colleagues [1] talking about parental experiences of the diagnostic processes for their children (with autism in mind) and thought it worthy to mention on this blog.

Detailing the results of a qualitative study where "parents were interviewed about their experiences of the neuropsychiatric diagnostic process, i.e. the time before the screening, the time during the neuropsychiatric multidisciplinary evaluation and the time after diagnosis" some potentially valuable snippets of information emerged.

Three themes are reported on based on parental interviews: "seeking knowledge, trusting and challenging experts, and empowered but alone." The authors suggest that some modifications could be made to the current system (based in Sweden where the research took place) including: "developing a checklist outlining relevant contacts and agencies, establishing a coordinator responsible for each child, dividing the summary meeting at the clinic into two parts, making more than one visit to the preschool, and providing a parental training programme."

Outside of the continuing focus on how long the whole assessment/diagnosis procedure related to autism can sometimes take (see here) and the idea that parents/caregivers generally know their children better than strangers (see here), I'd like to think the Carlsson recommendations might stretch further than just applicability to Sweden. Indeed, the findings reported by Laura Crane and colleagues [2] on the UK parent experience of offspring autism diagnosis paint an unequally 'unsatisfactory' picture for many families.

Personally I think there are other ways that the diagnostic procedure can be improved allowing for the current state of research on autism assessment/diagnosis and particularly the notion that an in-depth analysis of a child (or adult) trumps pop psychology quizzes (see here). First and foremost is money and resources. We need lots more of both and a move away from the idea that 'more can be done with less'. Autism assessment and diagnosis is currently time- and resource-consuming because it has to be. Not least because autism rarely appears in some sort of diagnostic vacuum (see here) and each person tends to present differently. If you want an accurate picture of someone's strengths and difficulties, you need to put time into assessing them. Second, I think there is a compelling case for the setting up of regional centres of excellence focused specifically on the assessment and diagnosis of autism spectrum disorders (ASDs). I appreciate that here in Blighty there are centres already in place but these need to be rolled out further across the country and where concerns are raised about a child (or adult) appropriate referral to such centres is made in a timely fashion. The idea that in parts of the UK we might have already started national screening for autism (see here) is complementary to that referral model. This model also pools money and resources together. I might add that the increasing moves to incorporate telemedicine and technology into autism assessments should also be accelerated (see here for example).

Insofar as the support and information provided to parents of newly diagnosed children or indeed, adults finding themselves with an autism diagnosis, I'd like to think that there are already some good measures in place to answer the question: where next? Here in the UK, most people will probably be referred to the National Autistic Society (NAS) as a start. They have some very detailed information about many aspects of autism and have been a mainstay for many, many years. That being said, they are not the only provider of information. I've always been under the impression that for many parents at least, seeking out other parent-based groups perhaps on a more local level has also been important to them. Putting any politics aside, it is not beyond current capability that a list of various agencies and groups could be provided to the parents of newly diagnosed children or newly diagnosed adults at those regional centres carrying further information. This could cover many topics including what educational and financial benefits people are entitled to.

Insofar as the idea of 'empowered but alone' mentioned by Carlsson et al there are some suggestions that can be made here. Not least is a strengthening of the idea that local-level support is a key area requiring more investment. As an example of a resource near where I am, we have services such as this. With a little more investment, I'd like to think that such resources could again be rolled out on a more national scale. Combined also with further training and investment in more on-line resources (including that covering social media [3]) and I'd like to think some small changes could make some big differences to families. The idea also of asking families and their children what they need and how it might be best delivered might also be a rather good idea.

And such support shouldn't just stop as and when the assessment/diagnostic procedure is completed...

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[1] Carlsson E. et al. Negotiating knowledge: parents' experience of the neuropsychiatric diagnostic process for children with autism. Int J Lang Commun Disord. 2016 Feb 1.

[2] Crane L. et al. Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism. 2016 Feb;20(2):153-62.

[3] Mohd Roffeei SH. et al. Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). Int J Med Inform. 2015 May;84(5):375-85.

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Carlsson E, Miniscalco C, Kadesjö B, & Laakso K (2016). Negotiating knowledge: parents' experience of the neuropsychiatric diagnostic process for children with autism. International journal of language & communication disorders / Royal College of Speech & Language Therapists PMID: 26833425

The bean counters of autism (part 2)

Consider this post an update to my previous discussions on the economics of the autism spectrum disorders (ASDs) published a few years back (see here). The interest in 'what autism costs' from a monetary point of view has been rekindled following quite a bit of media discussion on the study by Ariane Buescher and colleagues [1] (open-access here) including a piece posted on the BBC website and a write-up in the Guardian newspaper with quite a sensational headline: Study says cost of autism more than cancer, strokes and heart disease. The Buescher paper concluded that there was a "substantial direct and indirect economic effect of ASDs". An accompanying editorial from Shattuck & Roux [2] on the Buescher paper is also worth a read too.

The main points from the Buescher paper are pretty visible in the paper and accompanying media, but include:

• The estimated lifetime costs of supporting someone with autism and accompanying learning disability (intellectual disability) comes in at about £1.5 million here in the UK and $2.4 million in the United States. For those with no accompanying learning disability, the costs are estimated at £900,000 in the UK and $1.4 million in the US.
• The total estimated cost of autism in the UK is roundabout £32bn per year mostly associated with adult costs. Indeed, with only £3bn of that £32bn estimated to be directed to children with autism, there is a rather large gap very much apparent, bearing in mind that "individual productivity loss" (lost employment) made up a sizable proportion of the adult cost estimate. This is a hot topic in autism at the moment.
• Medical costs also get a mention and the fact that: "Medical costs were much higher for adults than for children".
• Some discussion is also made of the amount of money dedicated to autism research. The Guardian report on this paper notes: "In the UK, £4m per year is spent on autism research, compared to £590m on cancer, £169m on heart disease and £32m on stroke research". I have to say that I'm not a great believer in making such comparisons given that there is quite a difference between something like autism and what falls under the heading of heart disease or cancer for example. Although perhaps placing a person at some [variable] increased risk of early mortality through comorbidity or the issue of wandering, autism is not for example, generally a life-limiting condition as the other diagnoses can sometimes be. Nevertheless, £4m spent annually on autism research here in the UK is a meagre sum; about the same as some football (soccer) transfers if I were to use another comparator.

There is always a danger that such studies of finances risk stigmatising a condition and resigning individuals - the many faces behind these figures - merely to statistics. In these days of continued austerity, the sum of £32bn is no small amount but one has to be slightly cautious about the figures arrived at (mostly estimates) and in what context such sums of money are used. I can speak from seeing one of the adult services available here in the UK that costs can be high but these are often offset against providing educational, residential and medical services which can very much positively impact on a person and their quality of life, and by proxy, the extended family too. Parents, siblings and other family members are more often than not tax payers (and voters!), and in the spirit of at least one arm of our welfare system here in the UK: availability from cradle to the grave and free at the point of need (see here) are important concepts to bear in mind.

I note that the inequality in autism research vs. autism services spending has already surfaced in some of the discussions on the Buescher paper. An "unacceptable imbalance" is the way one commentator put it complete with stark comparison of research spend vs. services spend. My mind wanders back to the recent Pellicano paper on autism research priorities here in the UK (see here) and how the identified goal of research making a difference to day-to-day life figured so heavily in that consultation. Again, I think we have to be a little bit cautious here in terms of the aims and objectives of autism research and the territory where such discussions can potentially head into. I would like to think that alongside the noble sentiments of a research agenda making an impact on day-to-day living, the Buescher findings might also open up wider discussions about things like the notion of plural autisms and onwards how research could better start taking into account factors like best responders to certain interventions. One might also think that a greater focus on differing developmental trajectories including those 'optimal outcomers' would be more forthcoming if one truly wanted to see how autism may not necessarily just be defined by an economic cost or financial burden.

"Parental productivity loss" is also mentioned in the paper, and an important concept this is too. Other media pieces on the Buescher paper talk about the effect of caring for a child or children with autism, and how jobs and careers are sometimes left behind [3]. I don't say this to further stigmatise or apportion blame, but the reality is that for some parents, quite a few parents [4], quitting employment in order to care for a child/adult happens and happens often. This can have obvious financial effects on the family and perhaps just as important, might also influence issues like stress levels too.

There is little more to say about the Buescher study and it's implications. I would perhaps reiterate that whilst the headlines of this study talk about counting costs and the "search for effective interventions that make best use of scarce societal resources", one should not lose sight of the fact that behind the figures and sums are real people and real families often struggling with severe financial hardship on top of various other challenges. I do believe that as a society we are becoming better at helping those with autism and their families to live rich and rewarding lives but would prefer not to see too many more studies just boiling autism down to an economic cost.

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[1] Buescher AVS. et al. Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics. 2014. June 9.

[2] Shattuck PT. & Roux AM. Autism: Moving Toward an Innovation and Investment Mindset. JAMA Pediatrics. 2014. June 9.

[3] Montes G. & Halterman JS. Child care problems and employment among families with preschool-aged children with autism in the United States. Pediatrics. 2008 Jul;122(1):e202-8.

[4] Ouyang L. et al. A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability. Res Dev Disabil. 2014 Jul;35(7):1518-27.

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Ariane V. S. Buescher, Zuleyha Cidav, Martin Knapp, & David S. Mandell (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States JAMA Pediatrics : 10.1001/jamapediatrics.2014.210

As if to prove a point

I don't really like the phrase 'I told you so'. It always seems a little bit too smug. The kind of thing that Mums and Dads say to their children when they fall off the sofa whilst trying to copy surfers on the TV or indeed much admired superheros like the Silver Surfer (yes, that was me standing on the sofa doing my best Norrin Radd impression and failing). Much better to say something like 'as if to prove a point' so as not to come across as quite such a know-it-all mums and dads.

I say all this because a letter published in Nature today by Kerri Smith* reiterates a post a few days back on how our research focus really needs to start giving more to mental as well as physical ill-health. $1 trillion dollars a year is the price tag associated with the direct and indirect costs of 'brain disorders' in Europe alone to any health economists out there. Granted the words 'brain disorder' are not the best description that I would use (is a headache a brain disorder?) but you can't argue with the financials and the need for a lot more explanation of mental ill-health, at the same time trying to improve symptoms and quality of life whatever that is taken to mean.

There's very little more to say on this topic aside from 'as if to prove a point' and provide a link to some surfing dudes.. rad man!

* Smith K. Trillion-dollar brain drain. Nature. 4 October 2011. doi:10.1038/478015a

The financials of mental ill-health

Health is a funny old thing. The old adage goes that you don't realise how important good health is until you don't have it. For many people when they think of health, they generally think of physical health and the onwards connotations of disease, infection and other things related to doctors and hospitals. Modern day health and its word partner in crime 'well-being' (hyphenated or not?) however reflects much more than the various physical and somatic conditions that might affect us, it also encompasses our mental health and its consequences to our lives and indeed, to our physical health.

A few reports and studies led me to this post on mental health and ill-health worthy of some consideration and comment. Today (26/09/11) the BBC website links to a paper published in the The Lancet Oncology by Sullivan and colleagues* (many colleagues!) on the unsustainable financial burden of cancer care in the developed world. The figures banded around are absolutely astronomical in terms of the costs of care, medication and new technologies implemented on our war against cancer as more cases are diagnosed and more comprehensive treatments are developed. To quote from the authors: "we spend more because we can do more to help patients".

Contrast this with another couple of reports, the first from Wittchen and colleagues** on the size and burden of mental 'disorders' in Europe. The article (full-text available) suggests that Europe-wide the numbers of people with mental ill-health, covering a wide range of conditions, is high and represents Europe's largest health challenge in the 21st century. The financial costs: don't even go there.

The second report is this paper published by Ramin Mojtabai*** on the rates of self-reported mental health disability in the United States. The bottom-line: rates of mental ill-health are rising; over a 10-year period estimated at an extra 2 million people who reported mental ill-health in the US. Again the financials: don't even go there.

The point I want to make with these comparisons is that the monetary costs of our physical ill-health on things like screening, treatment and loss to the economy from things like time off work are significant and growing. Having said that the impact of a growing population reporting mental health issues potentially represents an even greater economic burden, which perhaps due to various issues such as 'not-knowing' what causes mental ill-health and how to effectively tackle it, will likely further stretch the seemingly dwindling National finances available. Please note that I am not saying that we should pit physical health against mental health in some kind of Doug McClure 'Land that Time Forgot' gladiatorial funding contest. Merely that we need to recognise how mental ill-health rivals physical ill-health in terms of numbers but funding for research and treatment may not necessarily reflect the parity.

The last word goes to Prof. Til Wykes, who last year, spelled out how bleak the situation was and might become: "In these austere times, it is worth bearing in mind that in England alone mental health issues cost us £77bn a year".

Food for thought.

Additional note 28/09/11: Tom Insel at the NIMH carries an interesting entry on his Director's blog about the global cost of mental ill-health (here).

* Sullivan R. et al. Delivering affordable cancer care in high-income countries. Lancet Oncology 12(10): 933-980. September 2011.

** Wittchen HU. et al. The size and burden of mental disorders and other disorders of the brain in Europe 2010. European Neuropsychopharmacology 21: 655-679. 2011.

*** Mojtabai R. National trends in mental health disability, 1997-2009. American Journal of Public Health. September 2011.