Autism diagnoses in Northern Ireland: the only way is up

"Autism diagnoses in NI [Northern Ireland] children up by more than 100%" was the headline on the BBC news website recently. It followed a Freedom of Information (FOI) request from the national broadcasting corporation here in Blighty to "all five of Northern Ireland's health and social care trusts... [covering] the period between 2013-14 and 2017-18."

The scale of the issue facing the various health and social care trusts when it comes to the significant 'growth' in both received and 'awaited' autism diagnoses is not to be under-estimated. Indeed, the BBC really needn't have gone down the FOI route because Northern Ireland already collects and quite publicly publishes quite a lot of information about autism in children under their geographical jurisdiction (see here and see here).

The details? Well, if you ever you needed proof that autism is still on the increase among children and young adults, the data provide it: "In total 2,345 children under 18 were diagnosed as autistic last year, compared with 1,047 five years previously." And other details are important too: "In keeping with trends that show males are more likely to be diagnosed, almost three times more boys than girls were found to be autistic in the five years."

What else is there to say? Some old and tired arguments about 'increasing autism awareness' being behind the increase in cases being diagnosed (and awaiting diagnosis and/or assessment) is reported in the BBC piece. About 20 years ago I would have agreed with this but not so much now; we are in an age of autism awareness and have been for several years. Perhaps it's time to start thinking about what factors outside of awareness might also be contributing to the substantial increase? Y'know, entertain the idea that some of the increase may well be a real increase (see here) and start thinking about what factors might be important there?

And with growing numbers of children and young adults being diagnosed with autism, so more current- and future-planning is required to ensure that their health, educational and social needs are met. It sounds great in theory but the reality is that service provisions and resources are already struggling and increasingly scarce. Indeed, a recent article on autism from across the Pond titled "The Coming Care Crisis as Kids With Autism Grow Up" hits the nail right on the head about how 'strained' many systems currently are. And that's without even taking into account what's going to happen 5 or 10 years down the line when more and more autistic children turn into autistic adults. Action is required, like now.

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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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On housing and autism

The commentary published by David Mandell [1] provides some food for thought today pertinent to the on-going debate about "how and where to house adults with autism."

I've kinda touched upon this complicated subject in past blog posts (see here) but wouldn't dare think that any quick and easy solutions are going to be forthcoming on this important topic.

Housing for those on the autism spectrum (and beyond) has a patchy history across the globe. From the dark days of mass institutionalisation of those with psychiatric and developmental disabilities to moves towards 'care in the community', one can almost chart how society's views and attitudes to some of its most vulnerable people have seemingly advanced in a relatively short space of time. As Mandell points out: "institutions and the practices that occur within them were hidden from public view, which led to little accountability and serious abuses" reflecting how moves towards "greater observability and accountability" have probably been a primary driver in the switch in housing options.

But all has not been plain sailing in this transition. Many people here in Blighty remember those harrowing scenes filmed in places such as Winterbourne View, a place meant to be 'home' for many people, and with it, meant to provide all the trappings of home such as happiness, comfort and dignity; all sadly lacking in that case. There have, as Mandell also acknowledges, also been serious misgivings about how community services serve all those on the autism spectrum particularly when "caring for individuals with more profound impairments." A recent and relevant example of this can be read here. Balancing civil rights such as "inclusion and community participation" with basic needs such as actually finding suitable housing arrangements is a task still faced by far too many.

As I've said, there are no quick and easy solutions to ensuring that housing services meet everyone's needs. I do like the ideas that Mandell discusses in terms of a change of focus when it comes to housing arrangements in the context of autism, where "happiness and life satisfaction" and care quality are key over and above generic requirements such as inclusion and community participation. By saying that I'm not suggesting that inclusion and community participation aren't and shouldn't be important (see here for example) but rather that mandating them when it comes to residential options for those on the autism spectrum perhaps risks putting a 'one-size-fits-all' recommendation on what is supposed to be a personalised and tailored core issue. Living in the countryside or remote areas as quite a few people in the general population also do - "segregated farming communities" - should not for example, be viewed as 'a worse option' if and when someone is happy in such a setting and experiences a good quality of life. Even worse, that by housing people in "poor neighborhoods with few opportunities for community engagement" purely on the basis of concepts such as social inclusion, risks putting vulnerable adults in an even more vulnerable position (combining at a time when care resources and finances are already reaching breaking point).

And when it comes to residential placement for children when required [2] similar considerations also might apply... happiness, life satisfaction and good quality care and support. Simple.

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[1] Mandell DS. A house is not a home: The great residential divide in autism care. Autism. 2017 Oct;21(7):810-811.

[2] Benderix Y. et al. Parents' experience of having a child with autism and learning disabilities living in a group home: a case study. Autism. 2006 Nov;10(6):629-41.

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Suicidal behaviour in autism

The paper by Hannon and Taylor* was the starting point for today's post looking at suicidal behaviour among people diagnosed as being on the autism spectrum. Granted such a topic is hardly great dinner table conversation, but as per their suggestion on the prevalence of "suicidal behaviour among young people with ASD ranges from 7-42%", this is nevertheless a potentially important subject to cover. Even more so if one considers the age range included in the Hannon/Taylor review (< 25 years) allied to the numbers of children on the autism spectrum who are turning into young adults and the various challenges they face.

As I've indicated on previous posts, suicide either completed or ideation, is a very complicated process. It is neither uniform in the reasons which bring a person to such a state nor is it necessarily biomarker-able (despite some good research attempts - see here). I should also add that whilst there is some quite lively research interest looking into the role of certain agents or organisms being somehow correlated with suicide risk - think T.gondii and 'cat ladies' - issues remain in teasing out such variables as being the most important 'causative' ones in that relationship.

The Hannon/Taylor paper does provide one or two suggestions about how suicide might be a risk issue for some on the autism spectrum. To quote again: "Depression and abuse are risk factors for suicidal behaviour in this population". Indeed this issue of depression being a potentially important aspect was something that has been picked up by other authors, in particular the paper by everyone's favourite 'historical character has autism' author, Prof. Michael Fitzgerald in his paper on suicide and Asperger syndrome**. Depression as autism research sort of already knows, is no stranger to autism as comorbidity (see here) although there is still discussion about the hows and whys of depression onset in cases of autism. I'd hazard a guess that it's probably going to be a complicated, and yet again, non-uniform relationship.

The suggestion that abuse might be a risk factor for suicide ideation/completion in relation to cases of autism is also a very relevant topic these days. More than one campaigner (see here and here) here in the UK is bringing the issue of bullying in relation to autism for example, into the public consciousness. If one assumes that bullying (whether person-to-person or online) is a form of abuse, you can see how it might affect anyone; but perhaps more so someone who might already be quite anxious, sometimes quite socially-isolated and perhaps prone to a heightened degree of mental 'regurgitation' (i.e. going over the same thoughts again and again and again). The term also includes other forms of more readily recognised abuse such as physical or sexual abuse, which have also, unfortunately, been reported to be part and parcel of the history of some on the spectrum***.

Outside of depression and abuse being linked to suicide in autism, I was also drawn to the paper by Raja and colleagues**** (open-access here) and their suggestion that "Most patients with suicidal behavior or ideation presented psychotic symptoms". Again, this is a most interesting area of research when it comes to autism, albeit still quite an emerging area. I've talked before about the paper by Davidson and colleagues (see here) for example, reporting on the prevalence of Asperger syndrome in cases of first episode psychosis (3.6%). This combined with the growing interest in the overlap between the autism spectrum and the schizophrenia spectrum (see here) adds a further degree of complexity to the question of how suicide might be linked to cases of autism. And then there is the gender issue to consider when it comes to suicide...

Outside of the issue of awareness that as Kato and colleagues***** put it: "ASDs should always be a consideration when dealing with suicide attempts in adults at the emergency room", the combined research in this area offers some potentially important ways that professionals and families might be able to intervene if suicide ideation starts to become an issue for some on the spectrum. I've listed a few points below but please, don't see this as some sort of definitive list by any means. Also keep in mind my caveat on this blog about not giving medical or clinical advice being particularly important when it comes to something like suicide.

(i). Social circles and support. In the same way that having a social network might be one of the tools in the arsenal to relive parenting stress (see here) so I'm minded to point out that it might also serve some positive function when it comes to affecting risk of suicide in cases of autism. Extrapolating from research on the periphery of autism such as the paper by Szanto and colleagues****** some degree of social support or having a social network might be seen as a protective factor against suicide risk. How this translates practically is another issue, particularly in these austere times, but one could argue that social support could mean face-to-face contact or even something like an online group outside of just family contact. The issue of religious belief and affiliations impacting on suicide risk is perhaps a related issue and not necessarily something that should be discounted despite the sweeping generalisations made about autism and a belief in God.

(ii). Medication. I'm by no means qualified to talk about medication and who should be prescribed what, so please don't take this as any kind of advice. Drawing on research again outside or on the periphery of autism however, there does appear to be a case for certain medicines being used where suicide ideation comes about. Reutfors and colleagues******* for example, looking at suicide risk in schizophrenia and the use of preventative medication suggested that: "Lower suicide risk was found in patients who had been prescribed a second generation antipsychotic (clozapine, olanzapine, risperidone, or ziprasidone)". As I've mentioned, the Fitzgerald paper on suicide and Asperger syndrome also talked about depression as being potentially linked, so perhaps there may be merit in looking at medication to combat this aspect as also potentially affecting suicide risk. That being said, one has to mindful of the results by Björkenstam and colleagues******** (open-access) "linking initiation of SSRI to increased short-term suicide risk". The take-home message is to speak to someone in medical authority about this option.

(iii) The talking therapies. I'm not going to get too hung up on the use of things like cognitive behavioural therapy (CBT) as another option when it comes to suicide ideation and autism but it is something that could perhaps be considered for some. Based on the published literature on CBT for suicide ideation, the picture is still a little bit tentative for (a) effects and (b) why it may have some positive effect for some people. To quote from the paper by Handley and colleagues********* "CBT appears to be associated with reductions in hopelessness.... Less consistent results were observed for suicidal ideation". In short, it's again complicated.

There are various other strategies which have been suggested more generally with regards to suicide prevention (see here) but as of yet, there's little in the way of published evidence as to whether suicide ideation in cases of autism is more or less likely to be affected by such options.

From a cold, hard research point of view, I do think there is quite a bit more to do on this topic and not necessarily just with purely social or psychological factors in mind. I'm for example intrigued by the idea that gut and brain might be involved in depression, one of the risk factors for suicide ideation and autism (see here).  I'm also taken back to the collected work on suicide and vitamin D and suicide and lithium (see here) as other potentially important factors, especially given the emerging results on some of these areas with autism in mind (see here). Of course, harking back to my opening statement, the path towards suicide and suicide ideation is a complex one and likely to be a very individual one too.

To close, just in case you need someone to talk to, the Samaritans here in the UK (see here) and in the US (see here) are only a phone call or email away...

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* Hannon G. & Taylor EP. Suicidal behaviour in adolescents and young adults with ASD: Findings from a systematic review. Clinical Psychology Review. 2013: October 15 [in press].

** Fitzgerald M. Suicide and Asperger's syndrome. Crisis: The Journal of Crisis Intervention and Suicide Prevention. 2007; 28: 1-3.

*** Mandell DS. et al. The prevalence and correlates of abuse among children with autism served in comprehensive community-based mental health settings. Child Abuse Negl. 2005 Dec;29(12):1359-72.

**** Raja M. et al. Autism Spectrum Disorders and Suicidality. Clin Pract Epidemiol Ment Health. 2011 Mar 30;7:97-105.

***** Kato K. et al. Clinical features of suicide attempts in adults with autism spectrum disorders. Gen Hosp Psychiatry. 2013 Jan-Feb;35(1):50-3.

****** Szanto K. et al. Social emotion recognition, social functioning, and attempted suicide in late-life depression. Am J Geriatr Psychiatry. 2012 Mar;20(3):257-65.

******* Reutfors J. et al. Medication and suicide risk in schizophrenia: A nested case-control study. Schizophr Res. 2013 Oct 1. pii: S0920-9964(13)00500-8.

******** Björkenstam C. et al. An Association between Initiation of Selective Serotonin Reuptake Inhibitors and Suicide - A Nationwide Register-Based Case-Crossover Study. PLoS One. 2013 Sep 9;8(9):e73973.

********* Handley TE. et al. Incidental treatment effects of CBT on suicidal ideation and hopelessness. J Affect Disord. 2013 Oct;151(1):275-83.

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Geraldine Hannon, Emily P. Taylor (2013). Suicidal behaviour in adolescents and young adults with ASD: Findings from a systematic review Clinical Psychology Review DOI: 10.1016/j.cpr.2013.10.003

Autism and residential placement

It's going to be a bit of an odd blog post this one as I muse over the results reported by McGill & Poynter* on the cost of residential placement for those diagnosed with an intellectual disability (ID). Odd because I'm going to be bringing in a little bit of politics - or at least UK Government legislation - and how this intersects with current financial policy. Hopefully you'll stay tuned though as I try and remain true to the aims of this blog (autism research and other musings).

I can't say I know a great deal about the provision of residential services for people with IDs. Through some contact with a local provider of such services for young people and older adults with autism, I've picked up snippets of what's involved and indeed the various processes and red-tape to be taken on board. All I'll say is that it's not as easy as you might think and indeed neither should it be in light of recent events at Winterbourne View here in the UK.

The McGill paper details a few important things:

• The aim of the study was to determine which factors most strongly contribute to the highest financial costs of placements for people with an ID.
• Bearing in mind the study was conducted in probably the most expensive part of the UK to live and work (South-East England), the average placement was estimated to cost £172,000 per year (about US$275,000). 
• To quote: "Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out-of-area residential care". This was indicative of the fact that (a) quite a few people with IDs cannot be readily cared for in their own home, (b) indeed quite a few people with IDs can't even be cared for in the vicinity of where they were born and/are normally resident, and (c) part of the reason why residential placement is provided is because of the presence and impact of challenging behaviours (often with autism as a diagnosis). This last point on the impact of challenging behaviours fits quite well into the findings of Hodgetts and colleagues** (thanks Natasa) and how one facet of challenging behaviours in cases of autism, aggression, can have profound effects on families and caregivers (the possible causes of such aggression have been debated in a previous post).

This is not the first time that such provision has been the topic of scientific investigation as per papers like this one from Allen and colleagues*** who seemed to have arrived at similar conclusions with regards to the factors influencing the use of out-of-area residential care (autism, challenging behaviours). I don't think that this is a big surprise to anyone really - the more complicated and severe the presentation of symptoms, the greater the need for specialist, residential care and onward the higher the costs in order to provide that care. This outside of issues like aging and the question that no parent really wants to think about: what happens to my child when I'm gone?

I did say that I would bring a little politics into this post and so I am by introducing some of the provisions of the UK Autism Act 2009. I've briefly touched upon the Autism Act in previous posts (see here for example) and how as well as being the first ever disability-specific legislation in the UK, the Act road-maps what the State must offer for adults with autism including: (i) an assessment of needs, (ii) transition planning from childhood to adulthood, and (iii) planning in relation to the provision of relevant services.

It all sounds pretty good doesn't it? That and the changes to UK/English SEN provision, now (or soon) enabling parents to have a far greater say in how budgets for their child are spent and also getting rid of the cliff-edge that was being 16-years of age where services now stretch up to the age of 25 years for those in further education. Looking at all this on paper, I actually am very proud that old Blighty is taking a lead on these issues.

Not to rain on the parade however, but legislation and Politicians talking the talk is one thing, practical implementation and ensuring the funds are available to fulfil promises and commitments is another. Indeed a few stories in the press quite recently seem to unravel the purposes of why these policies have been set up. So this article in TES magazine paints a rather different picture of transition, and this article in the Guardian on what might potentially happen to specialist FE colleges in this brave new world. Indeed even some of the service providers are battling under-funding issues as per this fairly recent story (something I've heard about before). Of course I don't need to remind anyone about the current financial climate we are all faced with and for viewers (hopefully) reading this in 2020 or 2030, it is currently all rather messy. Councils and local authorities are cutting back and at the same time having to hold services and even improve them. Rather them than me.

What's the take home message from this post? Well, as per other posts, and without trying to turn people into statistics, autism costs in terms of provision and care, and the more challenging the presentation, the more the costs rise. Here in the UK we're doing pretty well in terms of legislation and getting the rules and regulations more into line with how the real world looks where autism is concerned and trying to ensure that particularly those with very complex needs are appropriately catered for by the State. I actually know a few families who have already put things like the Autism Act to good use with their children's future in mind. That being said, there seem like there are enough loop-holes (if I can use that term) present so that things still don't necessarily run smoothly when planning transition and specialist care if and when required.

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* McGill P. & Poynter J. High cost residential placements for adults with intellectual disabilities. J Appl Res Intellect Disabil. 2012; 25: 584-587.

** Hodgetts S. et al. Home sweet home? Families’ experiences with aggression in children With autism spectrum disorders. Focus Autism Other Dev Disabl. January 2013.

*** Allen DG. et al. Predictors, costs and characteristics of out of area placement for people with intellectual disability and challenging behaviour. J Intellect Disabil Res. 2007; 51: 409-416.

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McGill P, & Poynter J (2012). High cost residential placements for adults with intellectual disabilities. Journal of applied research in intellectual disabilities : JARID, 25 (6), 584-7 PMID: 23055291

Increasing parental age and autism

I am trying to pitch at two proverbial birds with this stone of an entry. The title is quite ambiguous on purpose in that I am discussing both the suggestion of a link between advancing parental age at conception and 'risk of autism' but also the very important issue of aging parents and the provision of care for their children with autism. We will see how successfully this dual task is accomplished.

Reading through the research literature of 'risk factors' for autism, one thing outside of the sex ratio thing seems to crop up time and time again - how old parents were at the time of conception. In these times of more people having children later in life (the owness, rightly or wrongly, seemingly falling more on women than men), there is quite a lot of interest in what effects this may or may not be having on children born under such circumstances.

Whether it is mum's age or dad's age, several pieces of research have indicated a role of advancing parental years and later health and developmental outcomes. This quite large study for example, suggested that children of older dads did slightly worse on various cognitive measures compared to younger dads. Indeed, father's age has been the most interesting area when it comes to risk and conditions like autism - dare I say very strong evidence that crosses different populations?

At this point I think we have to be quite careful and remember my mantra about probability (not absolutes) and science. Yes, the results confirm a strong trend; but this by no means implies that every man in his late 40's+ fathering a child is 'predestining' that child towards autism. There are lots of other factors to consider, not least genetic influences, environment, etc; lest we start going back to the parental blame-game of times gone by.

The proposed mechanism for older dads and autism? Well there are several theories, many of which are explored on this blogsite, including methylation of DNA (something covered in my previous post on MTHFR), point mutations (SNPs), environmental factors, etc. It may be that other 'knock-on' factors such as low birth weight also come into play. Interestingly also, the calculations on what contribution older dads (and mums) have had to the rise in autism prevalence (at least in California) is not estimated to be massive. The bottom line: being an older dad carries a statistically significant association with childhood autism but lots of other factors are also potentially involved.

So then to the issue of aging parents and provisions of care for their children. This is a real issue and in years to come will, no doubt, become even more of an issue. Many parents have asked quite publicly 'what will happen to my child when I am old or when I am gone'?

Whilst appreciating that autism is a spectrum and that there are different types of presentation and different ability patterns within that spectrum, the issues of 'concern' and 'care' is pretty much a universal one given that even those at the high-functioning end of the spectrum have parents who still want to ensure the best for their child.

Many parents have blogged about this - one example is here. I read this entry and found it raised several important issues. Questions about a role for siblings in 'taking the reins'; questions about a role for 'social care'; and a very uncomfortable question about mortality. Although not by any means the same thing, similar questions have been asked about lots of other conditions not generally affecting life duration. There are no easy answers to this issue.

Assuming that there are siblings, one might expect them to take some "responsibility" if required, may be even assuming some kind of guardianship role where informed consent may not be easily given by a person with autism for example. Siblings are in a unique position because not only do they get an up-close look at autism, they follow the growth of their brother/sister and hence know more about them as a consequence.

The added benefit also being that siblings will have the best interests of their brother/sister at heart from a personal perspective rather than a social or financial ("what can the State afford") perspective. As this scenario becomes more of a reality, I expect to see many more brothers and sisters of people with autism becoming more vocal about such issues.

Some parents have talked about drawing up a personal plan of care of their child. Others have discussed drawing up wills and planning for the financial future of their child (which itself can have implications for benefits, etc). Planning seems all important to ensure that parental wishes are at least indicated.