World Autism Awareness Day: "individuals with ASD are 4-times more likely to experience depression in their lifetime"

Autistica: number 1 research priority

Today - 2 April - is World Autism Awareness Day.

According to the United Nations, today is a day to "highlight the need to help improve the quality of life of those with autism so they can lead full and meaningful lives as an integral part of society."

I'm sure everyone - those diagnosed with autism, their parents and other family members and those who've devoted their professional lives to autism - will have a different interpretation of how to accomplish that message. I assume however, that all strive for a better life for ALL those on the autism spectrum and perhaps moving the message from 'awareness' to something more like 'actions'.

Quite a big part of 'improving quality of life' means acknowledging that a diagnosis of autism brings about an elevated frequency of certain quality-of-life-draining issues. I've talked quite extensively about some of them on this blog (see here and see here for example) covering both physiological and psychiatric issues / labels / diagnoses. Of all the 'comorbidities' (if I can still call them that) mentioned, one diagnosis and/or constellation of symptoms seems to be particularly frequent and life-changing in the context of autism: depression (see here) in its many forms (see here).

Depression covers a lot of clinical ground and, in some cases, has some important links to some potentially life-limiting outcomes (see here) that have also been mentioned in the context of autism (see here). It's something that needs both screening for and management of (yes, depression is manageable) and can be literally life-transforming when tackled / managed successfully. I might add that alongside pharmacotherapy / talking therapy being indicated, there are various other options to potentially consider when it comes to the management of depression in various contexts (see here and see here and see here and see here) (minus any medical or clinical advice given or intended).

A recent paper by Chloe Hudson and colleagues [1] summarises the collected peer-reviewed literature on the topic of depression and autism, concluding that: "rates of depressive disorders are high among individuals with ASD [autism spectrum disorder]." Also, as per the title of this post, "individuals with ASD are 4-times more likely to experience depression in their lifetime" when compared with the non-autistic population. The authors have also very helpfully written a lay-person summary of their meta-analysis (yet another meta-analysis covering something to do with autism).

I don't think anyone is or should be particularly surprised by the Hudson findings but it does cement the autism-depression link based on the top of the methodological tree hierarchy of peer-reviewed science. I might add that another finding reported by Hudson et al - "Rates [of depression] were also higher in studies that included participants with higher intelligence" - is also worthy of comment (see here). Not least, when it comes to targeted screening for something like depression in the context of autism (and possibly beyond), but also because such a finding seems to add to the idea that being intelligent / cognitively more able does not always mean that life is just fine and dandy (see here). I might also mention that greater research and clinical efforts also need to be focused on screening for something like depression in some of the more 'under-studied' peoples of the autism spectrum too (see here). Y'know, just to ensure that depression being associated with higher intelligence is not simply because those who aren't more cognitively able are being excluded from such investigations...

There is another question that needs comment when it comes to the autism-depression link: why? Some authors have speculated that issues such as 'autism acceptance' could be part-and-parcel of any link (see here). Yes, the social environment probably does play a role for some people, but I'm slightly reluctant to suggest that acceptance plays a solitary role in the development of something like depression. I say that on the basis of some growing interest in how issues such as loneliness begets low self-esteem which *might* then lead into something like an enhanced risk of depression (see here). One also needs to consider that autism rarely appears in some sort of diagnostic or social vacuum (see here) so other labels and/or diagnoses could also elevate the risk of depressive symptoms appearing (see here for example). And then there is biology to also consider (see here). Factors related to the aetiology of depression are likely to be complex and quite individual across different people. Sweeping generalisations are not required.

The take-home message once again, is that the risk of depression is elevated when it comes to a diagnosis of autism, and screening and appropriate management are very much indicated [2]. To move on from just talking about improving quality of life to actually improving quality of life could well be achieved (at least in part) by recognising and tackling depression when it appears in the context of autism. Real quality of life changing stuff...

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[1] Hudson CC. et al. Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: a Meta-Analysis. J Abnorm Child Psychol. 2018 Mar 1.

[2] Sapmaz D. et al. The Clinical Features of Comorbid Pediatric Bipolar Disorder in Children with Autism Spectrum Disorder. J Autism Dev Disord. 2018 Mar 21.

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Autism awareness among the young is actually quite good

The message of 'increasing awareness of autism' is still a strong one in modern times despite the label of autism officially entering medical texts some 80+ years ago. We have a World Autism Awareness Week and a World Autism Awareness Day and lots more in-between to raise awareness of autism and what the label [differentially] means to many, many people.

The findings reported by Karola Dillenburger and colleagues [1] seem to suggest that, particularly among children and young adults, the autism awareness message is getting through as they observed: "Children and young people have good levels of awareness and knowledge about autism and reported positive attitudes towards peers with autism." Even further: "A higher than expected number of children and young people self-reported being on the autism spectrum."

Based on analysis of "two large-scale surveys: the Kids Life and Times survey for 11-year olds and the Young Life and Times survey for 16-year olds" yielding some 3300 children and young adults, researchers posed various questions including those pertinent to autism awareness. The results suggested that some 80% of teenagers had some knowledge about autism compared with about 50% of younger children. Most participants held positive attitudes towards autism including recognition that bullying is an issue that some on the autism spectrum are particularly at risk of. Further: "Self-reported prevalence of autism was 3.1% for teenagers and 2.7% for the younger children." That last point was based on the study population being based in Northern Ireland (which interestingly, has recently reported a rather large upswing in the number of formally-diagnosed cases of autism too).

These are rather positive results insofar as the recognition of autism and indeed, how common it is in modern times. It is perhaps not unexpected that some of these authors have some research form in this area [2]. The authors frame the result in terms of boding well for "peer-mediated support strategies for inclusive education" but I think they go much further than that. Assuming that awareness covers the entire spectrum of autism (see here) and not just a part/branch of it, I'd like to think these findings go some way to supporting efforts to 'make autism more visible' and onward, ensuring that the wants and needs of those on the spectrum are more readily expressed and addressed. Media and culture probably has a lot to do with such findings (see here for example) but the fact that many classrooms and schools do now cater for students on the autism spectrum no doubt played an important role in these findings.

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[1] Dillenburger K. et al. Autism awareness in children and young people: surveys of two populations. J Intellect Disabil Res. 2017 Jun 7.

[2] Dillenburger K. et al. Creating an Inclusive Society… How Close are We in Relation to Autism Spectrum Disorder? A General Population Survey. J Appl Res Intellect Disabil. 2015 Jul;28(4):330-40.

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Joint attention interventions for children with autism (mostly) work

Today (April 2nd) is World Autism Awareness Day. The theme this year is on inclusion and as the United Nations note: "Mainstreaming disability" insofar as recognising that: "Autism and other forms of disability are part of the human experience that contributes to human diversity." A noble cause indeed; not forgetting that for many on the autism spectrum, long-term outcome remains poor (see here) and awareness about human diversity really needs to go hand-in-hand with real action to change prospects and truly bring equality to the ENTIRE autism spectrum. Indeed, 'life-changing' is a word that should spring to mind...

Today I'd like to bring your attention to the findings reported by Kimberly Murza and colleagues [1] which perhaps go some way towards illustrating how relatively simple early intervention can bring about quite big gains onwards to potentially improving future prospects for those on the autism spectrum. The topic of the "systematic review and meta-analysis" carried out by Murza et al was joint attention - whereby two people, often a child and an adult, use various strategies to share attention of an object or event of some interest. Joint attention with autism in mind, has been of some interest for quite a few years.

Looking at 15 "randomized experimental studies" where various types of interventions were used to improve joint attention, researchers concluded that there was quite a bit of support "for explicit joint attention interventions for young children with ASD [autism spectrum disorder]." Yes, there is more to do in terms of "which children with ASD respond to which type of intervention" but work in other areas on best- and non-responders should teach us a few lessons about how to go about doing this.

There are a multitude of options when it comes to intervening in relation to joint attention, many of which are covered in a recent publication by the group Treating Autism (see here). JASPER (Joint Attention Symbolic Play Engagement Regulation) seems to be making quite a few scientific waves recently [2] but there are others; this bearing in mind the need to improve the quality of trials looking at such behaviours (indeed reviews are only as good as the trials included) and the understanding that behavioural intervention often does little to solve the more 'somatic ' comorbidity that can and does also impact on autism (see here).

I might also add that given the depressing news that not much has changed over the past decade insofar as age at diagnosis here in the UK [3], early intervention including that targeting joint attention does not necessarily have to wait until a diagnosis is formally received...

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[1] Murza KA. et al. Joint attention interventions for children with autism spectrum disorder: a systematic review and meta-analysis. Int J Lang Commun Disord. 2016 Mar 8.

[2] Goods KS. et al. Preschool based JASPER intervention in minimally verbal children with autism: pilot RCT. J Autism Dev Disord. 2013 May;43(5):1050-6.

[3] Brett D. et al. Factors Affecting Age at ASD Diagnosis in UK: No Evidence that Diagnosis Age has Decreased Between 2004 and 2014. Journal of Autism and Developmental Disorders. 2016. March 31.

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Murza KA, Schwartz JB, Hahs-Vaughn DL, & Nye C (2016). Joint attention interventions for children with autism spectrum disorder: a systematic review and meta-analysis. International journal of language & communication disorders / Royal College of Speech & Language Therapists PMID: 26952136

World Autism Awareness Day and the CDC estimates

As designated by the United Nations General Assembly in 2007 (see here), today, Wednesday 2nd April 2014, is World Autism Awareness Day (#WAAD).

If you haven't already clicked the link to the UN statement above, I'd encourage you to do so and read over the articles included in the resolution.

Secretary-General Ban Ki-moon offers some wise words about the meaning of today in his annual address: "World Autism Awareness Day is about more than generating understanding; it is a call to action. I urge all concerned to take part in fostering progress by supporting education programmes, employment opportunities and other measures that help realize our shared vision of a more inclusive world".

Given the latest prevalence estimates from the US CDC suggesting that approximately 1 in 68 8-year olds in 2010 presented with an autism spectrum condition, the Secretary-General's words should resonate louder than ever. As expected, the debates rumble on about what the CDC figures do and don't show when it comes to the reasons to account for the fact that approximately "one in 42 boys and one in 189 girls... were identified as having ASD [autism spectrum disorder]" (see here for more details).

Discussions aside, just remember that behind every statistic are real people and real lives. And for the UK audience, have a look at Tuesday's BBC Horizon program: 'Living with autism' on the iPlayer.

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