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

2. 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

3. Fear and Anxiety Disorders
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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

4. The Nature of Anxiety in Autism
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The Nature of Anxiety in Autism

5. THE AUTISM RESEARCH GROUP
Prevalence
Around % 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)

6. Prevalence of Anxiety Disorders
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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

7. Suspected Causes (See South & Rodgers, 2017; Maisel et al., 2016)
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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

8. Sensory processing and the concept of uncertainty
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Sensory processing and the concept of uncertainty

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

10. Sensory processing and the concept of uncertainty
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Sensory processing and the concept of uncertainty

11. Sensory processing and the concept of uncertainty
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Sensory processing and the concept of uncertainty

12. Measuring intolerance of uncertainty
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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)

13. Sensory processing and the concept of uncertainty
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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.

14. Sensory processing and the concept of uncertainty
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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

15. Results of 15 ASD & 13 TD adults
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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

16. 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

17. Results of 15 ASD & 13 TD adults
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Results of 15 ASD & 13 TD adults
r = -.42*

18. Suspected Causes (See South & Rodgers, 2017; Maisel et al., 2016)
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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

19. 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.
...

20. Difficulty primarily in identifying emotions.
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Alexithymia
Difficulty primarily in identifying emotions.

21. Alexithymia: What is involved?
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Alexithymia: What is involved?
(Gaigg, Maurice & Bird, 2016)
How aroused do you feel?
How aroused are you actually?

22. Alexithymia: What is involved?
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Alexithymia: What is involved?
(Gaigg, Maurice & Bird, 2016)
Participant 2
Participant 1
r = 0.53
r = 0.13

23. Alexithymia: What is involved?
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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

24. Alexithymia and Interoception
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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

25. 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

26. THE AUTISM RESEARCH GROUP

27. 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.”

28. Implications for Treatment
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Implications for Treatment

29. Implications for Treatment
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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)

30. Parent mediated (zone of proximal development)
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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

31. 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.

32. Mindfulness Based Cognitive Therapies (MBCT)
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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)

33. Are online mindfulness programmes effective?
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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

34. As effective as face-to- face MBCT (Krushe et al., 2013)
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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

35. Active control: Serene.me.uk
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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

36. 72 adults responded to call
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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

37. Predictors of anxiety at Time 1 (n = 54)
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Predictors of anxiety at Time 1 (n = 54)

38. Predictors of anxiety at Time 1 (n = 54)
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Predictors of anxiety at Time 1 (n = 54)

39. Predictors of anxiety at Time 1 (n = 54)
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Predictors of anxiety at Time 1 (n = 54)

40. Predictors of anxiety at Time 1 (n = 54)
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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

41. 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.

42. Results: T1-T3 primary outcomes
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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

43. Results: 3 month follow-up – Outcome measures
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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

44. Results: 3 month follow-up – Outcome measures
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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

45. What are the next steps and open challenges?
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What are the next steps and open challenges?

46. Effective Screening & Diagnosis
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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)

47. Effective Delivery of Support
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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

48. Effective delivery of support
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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?

49. How about support in schools?
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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”

50. Large and rigorous trials
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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?)

51. 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