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Tackling anxiety in autism

Event at City tackles some of the most pressing needs of autistic children and adults and the people who care for them


Practitioners, researchers, clinicians, policy makers and individuals from the autism community came to City, University of London in April to learn more about autism and anxiety.

Hosted by Dr Sebastian Gaigg of the Autism Research Group (ARG) at City - and titled ‘Tackling Anxiety in Autism: Bridging the gap between research, practice and policy’ - the event featured talks from experts in academia, education and health services, and provided an opportunity for in-depth discussions around strategies for tackling some of the most pressing needs of autistic children and adults and the people who care for them.

Starting the talks in the morning, Dr Mikle South from Brigham Young University (USA) gave an overview of what we currently know about autism and anxiety.

Beginning with the critical point that an estimated 50 per cent of people with autism, and possibly more, present with anxiety disorders, Dr South outlined what is known about the mechanisms that are thought to be responsible.

Autism and uncertainty

The focus was on sensory processing abnormalities and difficulties coping with the unexpected and unpredictable nature of events – so called Intolerance of Uncertainty (IoU). Dr South explained that recent research indicates that people with autism may experience the world as new and unexpected much of the time, because their perceptual systems are less driven by prior expectations and more by current sensory input. As a result the world is more unpredictable, which may be the reason for the greater levels of anxiety on the one hand, as well as the presence of repetitive behaviours and an ‘insistence on sameness’ on the other, as a way of trying to manage the unpredictable nature of the world

Supporting children with autism

Following Dr South, Helen Cottell and Jane Crawford from West Sussex County Council provided an overview of the role their team of advisory teachers play in supporting children with autism, their families and schools in relation to the challenges that arise in the context of anxiety.

They explained that difficulties with anxiety are among the principal reasons for schools and parents to seek their support. Their work spans across primary and secondary schools, and they also work directly with families to develop action plans for children suffering from mental health difficulties. Among the strategies they use to support children with autism who suffer from anxiety is to help them map their ‘landscape of fear’. Picking up on the themes introduced by Dr South, they explained that this strategy seems to help by making feelings of anxiety less unexpected and by raising the children’s awareness of what it is that causes them to feel worried and distressed.

Tackling intolerance of uncertainty

Dr Jacqui Rodgers, from Newcastle University, then spoke about additional therapeutic techniques she and her collaborators have been developing for tackling intolerance of uncertainty in autism as a way of treating anxiety.

Discussing the evidence relating to the benefits of Cognitive Behavioural Therapy (CBT) for people with autism, Dr Rodgers said that whilst existing therapies show promise for reducing anxiety in autism, they do not necessarily target the underlying mechanisms, including intolerance of uncertainty. The team at Newcastle have therefore developed an autism-specific parent-mediated CBT program called CUES (Coping with Uncertainty in Everyday Situations) in which parents learn techniques for gradually exposing their children to uncertainties (e.g., taking a different route to the supermarket) in non-threatening ways. Preliminary results about the effectiveness of the CUES program were recently published in the Journal of Autism and Developmental Disorders and indicate significant reductions in anxiety in children with autism and associated increases in tolerating uncertain situations.

Post-diagnostic support

David Walton, a Senior Counselling Psychologist from Northamptonshire NHS Trust, then provided an overview of the service their ADHD and Asperger’s team provide. Unlike many other teams in the UK, the ADHD and Asperger’s team integrates diagnostic assessment services with post-diagnostic support, including drop-in sessions and Psychoeducational programs developed for individuals with autism to learn about mental health, social skills and coping with change and employment issues.

In terms of therapeutic support for mental health difficulties, the team draws on a range of strategies including Cognitive Behaviour Therapy and Action and Commitment Therapy including mindfulness. David explained that their team had been established in 2004 and that referrals to them had increased steadily since then reaching just under 1000 in 2016, illustrating the dire need for services of this kind.

Alleviating anxiety

Finally, Dr Sebastian Gaigg from the ARG at City spoke about ongoing research on whether online therapy tools can help alleviate anxiety in adults with autism. Dr Gaigg explained that in addition to Intolerance of Uncertainty, individuals with autism may experience high rates of anxiety because they react emotionally to experiences of uncertainty whilst at the same time having difficulties identifying and describing these emotions effectively.

Since Mindfulness based therapies are designed to increase a person’s moment-by-moment awareness of their feelings and sensations and to accept them non-judgementally rather than to react on them, such therapies may be particularly useful for individuals with autism.

Dr Gaigg spoke about how recent research has shown that online mindfulness programs can lead to long term gains in wellbeing and mental health, similar to what is reported for face-to-face programs. Given the relative ease of access and cost-effectiveness of on-line therapy tools, his team, therefore examined whether online therapy tools could reduce anxiety in ASD.

The preliminary results of the ongoing work are very promising and show that adults with autism who complete a 4-week online mindfulness or CBT program demonstrate consistent reductions on several self-report measures of anxiety and general well-being over a three month period. Dr Gaigg explained, that the full results will be available toward the end of the year, when it will become clearer whether the benefits remain evident over a 9-month period.

Following the talks in the morning, the attendees were split into three groups for structured discussions in the afternoon, which aimed to identify the priorities for researchers, service providers and policy-makers over the coming years to make significant progress in tackling anxiety and mental health in autism and beyond.

Speaking about the day, Dr Sebastian Gaigg, said:

The event was a great success, and it is extremely encouraging to have seen so many people come together to discuss how we can best serve the autism community in relation to mental health. Our challenge now is to build on the day to make real progress and I am very pleased to say that everyone involved is keen to continue sharing knowledge and develop the strategies and practices necessary to improve the quality of life of people with autism.

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