Saturday, 5 January 2019

"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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