THE AUTISM RESEARCH GROUP Strategies for managing anxiety in autism: Current evidence and open challenges. Sebastian B Gaigg

Overview Part 1: The Nature of Anxiety in Autism THE AUTISM RESEARCH GROUP Overview Part 1: The Nature of Anxiety in Autism Prevalence and Clinical presentation The suspected causes Sensory processing Intolerance of Uncertainty Alexithymia (difficulty understanding own emotions) Part 2: Implications for treatment A brief reminder of CUES (see Jacqui Rodgers’ slides) Mindfulness Based Cognitive Therapy (MBCT) Next steps and open challenges

Fear and Anxiety Disorders THE AUTISM RESEARCH GROUP Fear and Anxiety Disorders Fear = response to immediate threat Anxiety = response to anticipated threat When do we talk about a ‘disorder’? When the feeling is excessive, uncontrollable and persistent When it interferes with a person’s ability to function

The Nature of Anxiety in Autism THE AUTISM RESEARCH GROUP The Nature of Anxiety in Autism

THE AUTISM RESEARCH GROUP Prevalence Around 10 - 15% of people in the general population have an anxiety disorder at some point in their life - most commonly a specific phobia. The prevalence in ASD is around 40-50% though estimates range from 20 – 80%. Generalised Anxiety, Social Anxiety and Phobias are among the most common (Buck et al., 2014; Kerns et al,. 2014)

Prevalence of Anxiety Disorders THE AUTISM RESEARCH GROUP Prevalence of Anxiety Disorders Why such a broad range of prevalence estimates? Differences in sample characteristics and methodology e.g. Age, population based vs. clinical cohorts, parent vs. self vs. clinician report, type of anxiety and validity of relevant assessments, etc… Accurate diagnosis is challenging Diagnostic Overshadowing Autistic individuals may find it difficult to identify & describe symptoms due to language/communication impairments & alexithymia Atypical presentation of symptoms

Suspected Causes (See South & Rodgers, 2017; Maisel et al., 2016) THE AUTISM RESEARCH GROUP Suspected Causes (See South & Rodgers, 2017; Maisel et al., 2016) Other factors play a role: Executive functions Language/Communication Social Cognition But the combination of IU and ER seem to act as the most proximal causes of anxiety Repetitive behaviours likely have a self-regulatory function

Sensory processing and the concept of uncertainty THE AUTISM RESEARCH GROUP Sensory processing and the concept of uncertainty

Sensory processing and the concept of uncertainty THE AUTISM RESEARCH GROUP Sensory processing and the concept of uncertainty

Sensory processing and the concept of uncertainty THE AUTISM RESEARCH GROUP Sensory processing and the concept of uncertainty

Sensory processing and the concept of uncertainty THE AUTISM RESEARCH GROUP Sensory processing and the concept of uncertainty

Measuring intolerance of uncertainty THE AUTISM RESEARCH GROUP Measuring intolerance of uncertainty People differ in how easy they find it to cope with uncertainties and unpredictable situations The Intolerance of Uncertainty Scale – 12 (IoU-12) Unforeseen events upset me greatly It frustrates me not having all the information I need I can’t stand being taken by surprise ... Autistic individuals consistently report greater IoU (e.g., Boulter et al,. 2014)

Sensory processing and the concept of uncertainty THE AUTISM RESEARCH GROUP Sensory processing and the concept of uncertainty Uncertainty always leads to some anxiety – but in an adaptive form to help us deal with the situation and learn from it. For autistic individuals, sensory processing differences may lead to chronic experiences of uncertainty (or ‘surprise’) and/or make uncertainty unusually aversive. This leads to maladaptive forms of anxiety that interfere with daily functioning.

Sensory processing and the concept of uncertainty THE AUTISM RESEARCH GROUP Sensory processing and the concept of uncertainty A limitation in the literature is an over-reliance on self-report to capture IoU – what about those who can’t self-report? Oddball paradigms and the mismatch negativity EEG response Standard A difference in brain response to the deviant indicates habituation to the standard Deviant

Results of 15 ASD & 13 TD adults THE AUTISM RESEARCH GROUP Results of 15 ASD & 13 TD adults Fz TD standard TD deviant P50 MMN Fz -100 -50 50 100 150 200 250 300 350 -1.5 -1.0 -0.5 0.0 0.5 1.0 1.5 TD Difference wave -2.0 -1.5 -1.0 -0.5 µV 0.0 0.5 1.0 1.5 -100 -50 50 100 150 200 250 300 350 ms tone tone

Results of 15 ASD & 13 TD adults THE AUTISM RESEARCH GROUP Results of 15 ASD & 13 TD adults Fz -100 -50 50 100 150 200 250 300 350 -2.0 -1.5 -1.0 -0.5 0.0 0.5 1.0 1.5 ms µV TD standard TD deviant P50 MMN Fz -100 -50 50 100 150 200 250 300 350 -1.5 -1.0 -0.5 0.0 0.5 1.0 1.5 TD Difference wave ASD standard ASD deviant ASD Difference wave * tone tone

Results of 15 ASD & 13 TD adults THE AUTISM RESEARCH GROUP Results of 15 ASD & 13 TD adults r = -.42*

Suspected Causes (See South & Rodgers, 2017; Maisel et al., 2016) THE AUTISM RESEARCH GROUP Suspected Causes (See South & Rodgers, 2017; Maisel et al., 2016) Other factors play a role: Executive functions Language/Communication Social Cognition But the combination of IU and ER seem to act as the most proximal causes of anxiety Repetitive behaviours likely have a self-regulatory function

THE AUTISM RESEARCH GROUP Alexithymia 50% of autistic individuals have difficulties identifying and describing their own emotions - Alexithymia The Toronto Alexithymia Scale: I’m often confused by what emotion I am feeling. It is difficult for me to find the right words for my feelings. When I’m upset, I don’t know if I am sad, frightened, or angry. I am often puzzled by sensations in my body. ...

Difficulty primarily in identifying emotions. THE AUTISM RESEARCH GROUP Alexithymia Difficulty primarily in identifying emotions.

Alexithymia: What is involved? THE AUTISM RESEARCH GROUP Alexithymia: What is involved? (Gaigg, Maurice & Bird, 2016) How aroused do you feel? How aroused are you actually?

Alexithymia: What is involved? THE AUTISM RESEARCH GROUP Alexithymia: What is involved? (Gaigg, Maurice & Bird, 2016) Participant 2 Participant 1 r = 0.53 r = 0.13

Alexithymia: What is involved? THE AUTISM RESEARCH GROUP Alexithymia: What is involved? (Gaigg, Maurice & Bird, 2016) Those who accurately report their arousal, report the least difficulties understanding their own emotions. Those with difficulties reporting their actual arousal report the greatest difficulties understanding own emotions

Alexithymia and Interoception THE AUTISM RESEARCH GROUP Alexithymia and Interoception In the same way that sensory processing difficulties can lead to uncertainty about the external environment (perception), alexithymia may lead to uncertainty about the internal environment (interoception). Garfinkel et al., 2016 have shown that difficulties in interoception are associated with anxiety in ASD

THE AUTISM RESEARCH GROUP Ongoing work at City on relation between Alexithymia and Emotion Regulation Greater difficulties understanding own emotions (Alexithymia) is associated with a greater tendency to suppress feelings, which is generally a maladaptive strategy

THE AUTISM RESEARCH GROUP

Does the model make sense in the real world? Experiences of teachers THE AUTISM RESEARCH GROUP Does the model make sense in the real world? Experiences of teachers Intolerance of Uncertainty “…they really like things predictable, to know what is happening, and to know what activity is next... so autism and anxiety is a lot about predictability” “…if he’s going to the classroom and then trampoline and then lunch, he wants to be reassured that it’s definitely the classroom, definitely the trampoline, definitely lunch, so there’s nothing that’s going to be different, there’s no change” Sensory Processing “if she’s in a space that [is] too noisy and too many people, this is something that can also bring out a lot of anxiety” Alexithymia / Communication barriers “they lack skills to express what they want …or to express how they feel. I think this is what makes them more anxious.”

Implications for Treatment THE AUTISM RESEARCH GROUP Implications for Treatment

Implications for Treatment THE AUTISM RESEARCH GROUP Implications for Treatment Coping with Uncertainty in Everyday Situations (CUES; Rodgers et al., 2016) Mindfulness based practices (e.g,. Cachia et al., 2016; Gaigg et al., in prep) Adapted CBT (see Kerns et al., 2016)

Parent mediated (zone of proximal development) THE AUTISM RESEARCH GROUP Coping with Uncertainty in Everyday Situations (CUES) (Rodgers et al., 2016) Parent mediated (zone of proximal development) Raise awareness of IoU and how it relates to autism symptoms Gradually introduce uncertainties in non-threatening situations and help promote tolerance of uncertainty identify helpful strategies through play and real-life ‘experiments’ identify and reduce less helpful strategies

THE AUTISM RESEARCH GROUP Coping with Uncertainty in Everyday Situations (CUES) (Rodgers et al., 2016) Initial results show that IoU and anxiety decrease for both children and parents following the 8-week training.

Mindfulness Based Cognitive Therapies (MBCT) THE AUTISM RESEARCH GROUP Mindfulness Based Cognitive Therapies (MBCT) Already established as effective in reducing anxiety, depression & stess in general public (Grossman et al., 2004; Strauss et al., 2014) Enhances awareness of thoughts, feelings and sensations, without reacting to them. I.e., targets Alexithymia / non-reactivity... ...and (possibly) uncertainty about sensory signals Initial evidence promising but only one rigorous RCT to date in ASD (Spek et al., 2013; see Cachia et al., 2016 for review)

Are online mindfulness programmes effective? THE AUTISM RESEARCH GROUP Are online mindfulness programmes effective? Aims: Establish feasibility and acceptability of online MBCT program Estimate long-term benefits vis-a-vis a waitlist and alternative treatment group Seek user feedback to understand need for autism-specific adaptations Design: 9 month longitudinal RCT MBCT vs. Active control vs. WL ~ 8 weeks ~ 14 weeks ~ 12 weeks T1 T2 T3 T4 Active Period June 2016 March 2017 March 2017 Dec. 2017

As effective as face-to- face MBCT (Krushe et al., 2013) THE AUTISM RESEARCH GROUP MBCT: BeMindful.co.uk 8-week MBCT course delivered across 4 modules, which guide user through standard mindfulness practices. As effective as face-to- face MBCT (Krushe et al., 2013) Endorsed by NHS

Active control: Serene.me.uk THE AUTISM RESEARCH GROUP Active control: Serene.me.uk 8-week psycho-educational course, largely based on CBT principles, which provides advice on how to manage anxiety. Minimal overlap with MBCT course No systematic evidence but developed in response to clinical need within NHS setting

72 adults responded to call THE AUTISM RESEARCH GROUP 72 adults responded to call 7 (10%) declined 11 (15%) consented but did not start 54 (75%) enrolled BeMindful (MBCT) n= 19 5 (26%) dropped out 14 (74%) Completed T3 Serenity (CBT) n= 16 7 (44%) dropped out 9 (56%) Completed T3 Waitlist (WL) n= 19 3 (16%) dropped out 16 (84%) Completed T3 At each time-point participants completed measures of Anxiety, IoU, Alexithymia and emotional non-reactivity

Predictors of anxiety at Time 1 (n = 54) THE AUTISM RESEARCH GROUP Predictors of anxiety at Time 1 (n = 54)

Predictors of anxiety at Time 1 (n = 54) THE AUTISM RESEARCH GROUP Predictors of anxiety at Time 1 (n = 54)

Predictors of anxiety at Time 1 (n = 54) THE AUTISM RESEARCH GROUP Predictors of anxiety at Time 1 (n = 54)

Predictors of anxiety at Time 1 (n = 54) THE AUTISM RESEARCH GROUP Predictors of anxiety at Time 1 (n = 54) Baseline data confirm that IoU, Alexithymia and Non- reactivity are all associated with anxiety in ASD. In combination, these factors account for 60% of participants anxious symptoms, with IoU and non-reactivity pulling the most weight (Maisel et al., 2016). DV Model (adjusted R2; F-test) Pred. B t p Anxiety R2=.60; F(3,50)=27.8; p<.001 IoU .35 3.46 <.005 NR -.52 -5.08 <.001 Alex .09 0.93 .36

Predictors of anxiety at Time 1 (n = 54) THE AUTISM RESEARCH GROUP Predictors of anxiety at Time 1 (n = 54) Findings in line with idea that IU and ER are the most proximal causes of Anxiety.

Results: T1-T3 primary outcomes THE AUTISM RESEARCH GROUP Results: T1-T3 primary outcomes Significant decreases in anxiety following both online support tools but at different time-points Immediate benefits for CBT Delayed benefits for MBCT CBT MBCT

Results: 3 month follow-up – Outcome measures THE AUTISM RESEARCH GROUP Results: 3 month follow-up – Outcome measures GAD-7 classification Moderate – Severe Anxiety (=/>10) mild – moderate Anxiety (<10) MBCT T1 5 T3 CBT 2 Wait List 8 7 TOTAL 18 14

Results: 3 month follow-up – Outcome measures THE AUTISM RESEARCH GROUP Results: 3 month follow-up – Outcome measures GAD-7 classification Moderate – Severe Anxiety (=/>10) mild – moderate Anxiety (<10) MBCT T1 5 T3 1 9 CBT 2 3 4 Wait List 8 7 TOTAL 18 14 12 20 4 2 6

What are the next steps and open challenges? THE AUTISM RESEARCH GROUP What are the next steps and open challenges?

Effective Screening & Diagnosis THE AUTISM RESEARCH GROUP Effective Screening & Diagnosis Accessible training/information for front-line staff to combat diagnostic overshadowing (GPs, SENCOs, teachers, etc…) Autism-specific and accessible screening tools (e.g., ASC-ASD; Rodgers et al., 2016)

Effective Delivery of Support THE AUTISM RESEARCH GROUP Effective Delivery of Support Not enough resources in the system to make the delivery of face-to-face psychological therapies feasible. Good evidence that self-help apps and online courses may be part of a solution (Krushe et al., 2013). But hardly any rigorous trials yet to assess efficacy in autism. And no good for many children

Effective delivery of support THE AUTISM RESEARCH GROUP Effective delivery of support Mindfulness in schools project (MisP) Teacher-mediated mindfulness training for children (e.g., paws b; .b) Seems feasible to adapt to cater for the specific needs of a broad range of children without FRIENDS for life Teacher-mediated CBT based programme to build emotional resilience for the prevention of anxiety & depression. Adaptation for LD & autism underway?

How about support in schools? THE AUTISM RESEARCH GROUP How about support in schools? The Zones of Regulation Widely used based on positive experiences by many teachers (at least for those children with a certain level of language ability) “… this Zones of Regulation board… is how he manages to learn where he is… if you ask him now ‘how do you feel?’… he says ‘anxious’. Like he’s learned when he feels anxious”. “We use the Zones of Regulation but to be honest, I think it’s too complicated [for less able children] I mean, there is a lot of concept there”

Large and rigorous trials THE AUTISM RESEARCH GROUP What are the next steps Large and rigorous trials …of adaptations to existing programs (paws b, FRIENDS) …of practices already in place (ZONES) Identify opportunities for feasible implementation Co-design adaptations Identify ‘active ingredients’ (what works and why?) Identify predictors of treatment responses (who it works for and why?)

Thanks to.... And of course you! Gracie McLaven Ritika Shah Paul Flaxman Corinna Haenschel Richard Latham Rebecca Millard Jacqui Rodgers Mikle South And of course you! Helen Cottell & Jane Crawford