“My cheeks get red and my brain gets scared” – learning about anxiety in children with autism

22 June 2021

Danielle Adams reviews Dawn Adams’ CEDAR Seminar Series talk: “My cheeks get red and my brain gets scared” – what can we learn from children, parents and teachers about the experience of anxiety for children with a diagnosis of autism? – delivered online on Thursday 20th May 2021.

“My cheeks get red and my brain gets scared” – learning about anxiety in children with autism

22 June 2021

Danielle Adams reviews Dawn Adams’ CEDAR Seminar Series talk: “My cheeks get red and my brain gets scared” – what can we learn from children, parents and teachers about the experience of anxiety for children with a diagnosis of autism? – delivered online on Thursday 20th May 2021.

Image of Danielle Adams

Associate Professor, Dawn Adams, began her CEDAR Seminar Series talk by highlighting her research focus on autism and anxiety and how embracing qualitative approaches in addition to quantitative approaches. The presentation discussed her journey from a background in quantitative analysis to appreciating the value of qualitative methodologies in combining a top down and bottom up approach to exploring overlapping symptomatology of autism and anxiety in children.

Dr Adams through her clinical psychology doctorate had examined the assessment of emotional states in people with intellectual disabilities and autism, concluding that this area was in its infancy and further studies were required to evaluate the differences in emotional expression and how we understand these differences. Further discussion around the differences in facial expression in autistic children and how they perceive and understand emotional expression in other people.

We need to think about the measurement tools for mental health and wellbeing in autistic children when carrying out research, considering whether we are capturing overall data or data related to specific questions, and therefore missing important outcomes. The usual questionnaires commonly seen in a top down approach focus on the expected outcomes. A bottom up approach allows participants to share a greater depth of information with the researcher although it can be more challenging to make this relevant and meaningful with respect to outcomes.

There has been an increase in publications of studies exploring anxiety in autism over the last ten years albeit during the 1940s Kanner reported children being fearful and afraid. Prevalence is greater in children with autism (reported as 40% clinical diagnosis) compared to neurotypical children (7 to 15%).

The combination of a possible atypical presentation with potentially overlapping symptomatology of autism and anxiety increases the challenge for both clinicians and researchers to identify, understand and intervene for anxiety symptoms in individuals on the spectrum. As researchers we need to reflect on whether we are only considering those individuals with a clinical diagnosis using a top down approach or are we considering the symptoms of anxiety with or without a clinical diagnosis.

Dawn’s talk continued to explore some of her latest research focused upon the presentation and assessment of anxiety in children with autism using both quantitative (“top-down”) and qualitative (“bottom-up”) methodologies. There is considerable overlap between the symptomatology of anxiety and autism causing diagnostic overshadowing. Typical characteristics of anxiety related to negativity and hypersensitivity and vigilance whereas the atypical symptoms include anxiety related to routines and restricted interests; compulsive ritualistic behaviours, fear of sensory experiences; social fearfulness and unusual fears. A researcher led approach can miss these atypical symptoms whereas an experts by experience approach may facilitate capturing this data. Quantitative studies focus on the types and symptoms of anxiety whereas the qualitative studies help us to understand triggers, consequences and solutions. Findings suggest that triggers include unplanned events and social demands with consequences of effects on relationships with friends and family. Difficulties in accessing support and issues of masking provide challenges to developing solutions.

Rating scales used in neurotypical children may not identify atypical facial expressions and give consideration to avoidance, a common strategy to address anxiety in autistic children. There are limited studies involving child self reporting which aligns better with psychological reports than with parent reporting. We need to think about the language that children use to report anxiety although it would not be possible to use all terms in a focussed questionnaire. Dr Adams’ current study combines the top down and bottom approach using a computer assisted intervention involving 10 children between the ages of 5 and 8.

Dawn concluded the seminar by highlighting that the DSM 5 symptoms of anxiety may not reflect the signs of anxiety in autism and that unique presentations may be more accurate than scores on an assessment. In order to measure changes in anxiety by evaluating changes in behaviour, we need baseline of behaviour type and intensity. Assessment tools need to be accessible for a range of abilities including both subjective and objective assessments. There is considerably more physiological arousal in children in autism although few studies look at this outcome.

The way forward is through co development and co evaluation with experts by experience to develop autism specific measurement tools involving a profile of characteristics and subscale scores so that we can evaluate if planned interventions are working.

This Seminar Series talk was of particular interest to researchers as it reported on rationale behind methodology, current findings and the direction of future research. The issue of diagnostic overshadowing is important to address however we can only do this by using appropriate outcome measures to evaluate both the prevalence and presentation of anxiety in autistic children.

Danielle Adams is a PhD student at the Centre for Educational Development, Appraisal and Research (CEDAR) at the University of Warwick.

Dawn Adams is an Associate Professor & Deputy Director of the Autism Centre of Excellence at Griffith University, Australia.

Other articles in the Seminar series:

A History of Controversies over the treatment of autism with behavioural therapies

The Hidden Face of Autism

 

 

 

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