Intolerance of uncertainty (IU) is "directly related to features of ASD"

Time and time again an important issue keeps cropping up in relation to autism and the various *comorbidity* that seem to be over-represented alongside the diagnosis: the core features of autism seem to be intricately related to the presentation of such *comorbidity*. Indeed, I wonder if the word 'comorbidity' should, on some occasions, really be replaced with something a lot more 'core' à la Mildred Creak for example and their coverage of the topic of anxiety years back...

It's been noted in relation to depression (see here) and anxiety (see here) and even some other 'extremes' of behaviour (see here) and, to be frank, is starting to become a bit of an elephant in the room. I know not everyone is completely enamoured with either the notion that anxiety is a core part of autism [1] or with 'intervening' in relation to altering the presentation of the core features of autism, but the available data is starting to suggest that for some, this could be a primary option if one wants to effectively tackle certain, often very disabling, *comorbidity* (see here).

Another potential example is offered in the findings reported by Roma Vasa and colleagues [2] who, looking at nearly 60 children diagnosed with an autism spectrum disorder (ASD) compared with 30-odd not-autism controls, reported that various [core] aspects of autism seemed to be related to intolerance of uncertainty (IU); but specifically "emotion dysregulation was the only significant predictor of IU."

IU is a concept rising in importance when it comes to autism (see here). As the name suggests, it's all about the negative effect(s) following uncertainty (i.e. not knowing) (some have talked about 'threat' as being important), and how anxiety in particular, seems to be cardinal symptom following such uncertainty and onward, the often disabling effects that arise from it (see here).

"These findings suggest that IU is directly related to features of ASD possibly due to shared genetic, neurological, or psychological underpinnings." Well that just about covers all the bases(!) but really the conversation should be moving to 'what can be done to mitigate IU and its effects?' Vasa, in another study [3], provides some more basic options when it comes to tackling anxiety in the context of autism, but specifically with IU in mind, we must wait [4] and wonder...

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[1] Montazeri F. et al. Network Analysis of Anxiety in the Autism Realm. J Autism Dev Disord. 2018. Jan 30.

[2] Vasa RA. et al. Relationships between autism spectrum disorder and intolerance of uncertainty. Autism Res. 2018 Jan 7.

[3] Vasa RA et al. Assessment and Treatment of Anxiety in Youth With Autism Spectrum Disorders. Pediatrics. 2016 Feb;137 Suppl 2:S115-23.

[4] Rodgers J. et al. Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES©) Programme. J Autism Dev Disord. 2017 Dec;47(12):3959-3966.

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Social anxiety affecting autism intervention outcome?

"Anxiety is an unpleasant state of inner turmoil" according to one definition. In other descriptions, words such as 'worry' and 'dread' are used (see here) describing how beyond the typical feelings of apprehension about a new situation for example, anxiety can turn into something altogether more serious and life-disrupting for some.

There are various types of anxiety disorder (see here) to consider, but for the purposes of this post I'm going to focus on social anxiety disorder in the context of autism and how the results from Melanie Pellecchia and colleagues [1] suggest we should be dedicating quite a few more resources to studying and ameliorating this important issue.

"This study examined the extent to which clinical and demographic characteristics predicted outcome for children with autism spectrum disorder." That was the starting point for the Pellecchia study looking at how child characteristics including the presentation of autism and other comorbidities might affect outcome following a school-based behavioural intervention. Drawing on data from an initial sample of over 150 pupils with autism, authors concluded that: "age and the presence of symptoms associated with social anxiety, such as social avoidance and social fearfulness, as measured through the Child Symptom Inventory-4, were associated with differences in outcome." Further: "The findings regarding the role of social anxiety are new and have important implications for treatment."

I'll chime in here and say that social anxiety in relation to autism is by no means a 'new ' concept as per other mentions on this blog (see here and see here for example). Indeed, anxiety appearing in the context of autism or autistic traits (see here) is something that many people have recognised as being potentially central to the more disabling features for quite a few on those on the autism spectrum. That and an 'intolerance of uncertainty' to borrow an important phrase [2]. The novelty from the Pellecchia data comes from the idea that the presentation of social anxiety alongside paediatric autism might well have some important effects on intervention outcome.

It's an interesting idea that when it comes to intervention for autism, the presentation of core autism symptoms might not be the major hurdle to 'treatment' success or positive outcome. I'm not sure how relevant it might be to this discussion, but I have talked previously on this blog about how one or two intervention ideas put forward for autism are probably not affecting core symptoms but rather peripheral or comorbid presentations. It strikes me that a question requiring some answers is whether targeting issues like social or other forms of anxiety when comorbid, might similarly affect the core presentation of autism? How about targeting other potential manifestations of anxiety presenting as more somatic features too?

And just in case you needed telling, issues such as anxiety are not some 'flash in the pan' thing when it comes to quite a few cases of autism [3]. Indeed, the implication being that even into adulthood, moves to curb anxiety-related issues might potentially have some very positive effects on the presentation of autism and onwards improvements in quality of life. The flip-side to all that being that anxiety, when unremitting, might have some far-reaching implications [4]...

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[1] Pellecchia M. et al. Child characteristics associated with outcome for children with autism in a school-based behavioral intervention. Autism. 2015. April 24.

[2] Boulter C. et al. Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with autism spectrum disorders. J Autism Dev Disord. 2014 Jun;44(6):1391-402.

[3] Gotham K. et al. Depressive and anxiety symptom trajectories from school age through young adulthood in samples with autism spectrum disorder and developmental delay. J Am Acad Child Adolesc Psychiatry. 2015 May;54(5):369-376.e3.

[4] Verhoeven JE. et al. Anxiety disorders and accelerated cellular ageing. Br J Psychiatry. 2015. May 1.

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Pellecchia, M., Connell, J., Kerns, C., Xie, M., Marcus, S., & Mandell, D. (2015). Child characteristics associated with outcome for children with autism in a school-based behavioral intervention Autism DOI: 10.1177/1362361315577518

Autism and intolerance of uncertainty

Good morning, gentlemen,
the temperature is 110 degrees

'Change' is often mentioned as something potentially problematic for many on the autism spectrum, and how unexpected change can sometimes have profound effects in terms of those so-called 'challenging behaviours' or when it comes to the presentation of important comorbidity such as anxiety. Like many others from the outside looking in, I was always taught that change as a more general concept was the important issue in autism, but recently the word 'uncertainty' has been creeping into various discussions that I've seen and in particular, the concept of an 'intolerance of uncertainty' noted in cases of autism.

As far as I can ascertain, intolerance of uncertainty with autism in mind was first described in the peer-reviewed literature by Christina Boulter and colleagues [1] and subsequently by Sarah Wigham and colleagues [2]; both papers originating from the University of Newcastle, here in the bracing North East of England. The Boulter paper initially looked at how intolerance of uncertainty (IU) tied into the expression of anxiety in paediatric autism noting results "consistent with a causal model". The Wigham paper extended these findings, drawing on how the IU-anxiety relationship may also stretch to the presentation (interplay) of sensory issues among other things.

Focusing specifically on the Boulter paper, a few details might be in order (unfortunately the paper is not open-access)

• IU - defined as "a broad dispositional risk factor for the development and maintenance of clinically significant anxiety" - was assessed as part of a larger research platform looking at anxiety and autism.
• Derived from various sources (including the Daslne initiative), participants (N=224) including children/young adults diagnosed with an autism spectrum disorder (ASD) (n=114) and asymptomatic controls (n=110) were assessed for IU via the Intolerance of Uncertainty Scales (child and parent report versions). "The scale assesses IU by asking respondents to rate the extent to which statements relating to emotional, cognitive and behavioural responses to uncertainty are like them, or... like their child". Various other measures including the SRS and the Spence Children's Anxiety Scales (SCAS) were also delivered to participants.
• Results: well as if we needed telling "children with ASD showed higher levels of anxiety than TD [typically developing] children". As per previous discussion on quality of life and autism, the question of who reports anxiety (first person vs. second person reports) featured in the Boulter findings, although "disagreement appears to have been more pronounced in the TD group than in the ASD group". 
• Children with ASD were also reported to have "significantly higher levels of IU" and such elevations in IU "accounted for the increased levels of anxiety in the children with autism" hence the previous chatter about causal models et al. Perhaps also importantly, the relationship between IU and anxiety "was the same in both children with ASD and those without" so "similar processes may be at work within both populations".

There are some obvious caveats to these results. The authors point out that their focus on ability "within the normal range" as a function of their questioning is a limitation, and the 'caution' that goes with "generalising conclusions to all children with ASD". I might add that the introduction of a non-ASD anxiety-only control group would probably not have gone amiss either. Drawing on the more general literature on IU, the findings from Yook and colleagues [3] might also suggest that additional measures of worry and rumination (another important concept [4]) might have been useful to investigate too. This may be particularly important given the reports of overlap in depressive-type symptoms/syndromes occurring alongside cases of autism. Me being me, I would also have liked to seen some physiological measure(s) included too...

Still, I am rather intrigued by these initial findings on IU and how they may potentially fit into the often very disabling anxiety which can accompany a diagnosis of autism. If anything else, they may present a further target for intervention - bearing in mind the need for further research on the use of something like CBT for anxiety in autism - with the aim of improving quality of life.

Music to close, and continuing a recent theme on this blog: The Smiths and Ask (yes, I have been listening to their greatest hits, and yes, they probably were one of the best bands ever).

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[1] Boulter C. et al. Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with autism spectrum disorders. J Autism Dev Disord. 2014 Jun;44(6):1391-402.

[2] Wigham S. et al. The Interplay Between Sensory Processing Abnormalities, Intolerance of Uncertainty, Anxiety and Restricted and Repetitive Behaviours in Autism Spectrum Disorder. J Autism Dev Disord. 2014 Sep 27.

[3] Yook K. et al. Intolerance of uncertainty, worry, and rumination in major depressive disorder and generalized anxiety disorder. J Anxiety Disord. 2010 Aug;24(6):623-8.

[4] Hare DJ. et al. Anxiety in Asperger's syndrome: Assessment in real time. Autism. 2014 May 8.

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Boulter C, Freeston M, South M, & Rodgers J (2014). Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with autism spectrum disorders. Journal of autism and developmental disorders, 44 (6), 1391-402 PMID: 24272526