Stress and autism Headlines from Research and Practice Richard Mills Research Autism and University of Bath June 2016
Coming up • What do we mean by stress? • Research and personal perspectives • Some implications for autistic individuals , families and professionals • Conclusions and take home points 2
• What do we mean by stress? 3
What is stress? • Stress is the feeling of being under too much mental or emotional pressure • Pressure turns into stress when you feel unable to cope . People have different ways of reacting to stress, so a situation that feels stressful to one person may be motivating to someone else • Many of life’s demands can cause stress, particularly work, relationships and money problems . And, when you feel stressed, it can get in the way of sorting out these demands, or can even affect everything you do 4
What is stress? • Stress can affect how you feel, think, behave and how your body works . In fact, common signs of stress include sleeping problems, sweating , loss of appetite and difficulty concentrating • You may feel anxious, irritable or low in self esteem , and you may have racing thoughts , worry constantly or go over things in your head. You may notice that you lose your temper more easily, drink more or act unreasonably 5
What is stress? • You may also experience headaches, muscle tension or pain, or dizziness • Stress causes a surge of hormones in your body. These stress hormones are released to enable you to deal with pressures or threats – the so-called "fight or flight" response • Once the pressure or threat has passed, your stress hormone levels will usually return to normal . However, if you're constantly under stress, these hormones will remain in your body, leading to the symptoms of stress. 6
Stress and anxiety • Stress and anxiety often conflated • They may be related but in general – Stress – related to external factors • E.g. physical or social demands – Anxiety – related to internal state • E.g. worrying Managed differently 7
• Stress is not an illness itself, but it can cause serious illness if it isn't addressed. It's important to recognise the symptoms of stress early • Recognising the signs and symptoms of stress will help you figure out ways of coping and save you from adopting unhealthy coping methods , such as drinking or smoking 8
• There is little you can do to prevent stress , but there are many things you can do to manage stress more effectively, such as learning how to relax , taking regular exercise and adopting good time-management techniques • Studies have found that mindfulness courses , where participants are taught simple meditations across a series of weeks, can also help to reduce stress and improve mood. 9
Research Autism survey • The report a Future Made Together (FMT) identified stress and anxiety as major issues facing the autistic and autism communities affecting – Autistic children and adults – Families and carers – Care professionals (Dinsmore A., Pelicano E. and Charman T. 2014) 10
How does stress affect autistic people? 11
The Research Autism survey • Common themes reported by autistic individuals and their carers include poor health, inability to keep a full-time job, additional strain on the family, and lack of adequate support. (Research Autism 2016) 12
How does stress affect autistic individuals ? Some key areas • Self-esteem and self confidence • Meltdowns, shutdowns – and catatonia • Sleep • School and work • Mood and relationships • Mental health 13
Autistic adult survey responses 100 90 80 70 60 50 negative impact on negative impact on negative impact on current strategies not % self esteem and sleep mental health effective confidence The Research Autism survey 2016 14
Research perspectives • Stress in autistic individuals 15
Research perspectives • Stress in autistic individuals • Recognising the subjective and transactional nature of stress – the Perceived Stress Scale (PSS) Cohen et al 1983 16
0 = Never 1 = Almost Never 2 = Sometimes 3 = Fairly Often 4 = Very Often 1 2 3 4 1 In the last month, how often have you been upset because of something that happened unexpectedly? In the last month, how often have you felt that you were unable to control the 2 important things in your life? 3 In the last month, how often have you felt nervous and “stressed”? 4 In the last month, how often have you felt confident about your ability to handle your personal problems? In the last month, how often have you felt that things were going your way? 5 6 In the last month, how often have you found that you could not cope with all the things that you had to do? 7 In the last month, how often have you been able to control irritations in your life? 8 In the last month, how often have you felt that you were on top of things? In the last month, how often have you been angered because of things that were 9 outside of your control? 10 In the last month, how often have you felt difficulties were piling up so high that you could not overcome them? PERCEIVED STRESS SCALE The PSS Scale is reprinted with permission of the American Sociological Association, from Cohen, S., Kamarck, T., and 17 Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 386-396. Cohen, S. and Williamson, G. Perceived Stress in a Probability Sample of the United States. Spacapan, S. and Oskamp, S. (Eds.) The Social Psychology of Health. Newbury Park, CA: Sage, 1988.
Research • Intellectually able autistic adults reported – a high level of subjective stress and – a perception of low coping ability regarding stressors in everyday life • Autistic traits were associated with – the perception of stress and distress and – coping ability • Much higher on all levels than in neurotypical controls (Hirvikoski & Blomqvist (2015) 18
Research • Autistic individuals often show problems with executive function (Kenworthy et al., 2008) affecting their choosing appropriate coping strategies. • Other aspects concern – co-existing psychiatric problems (Hofvander et al., 2009), – sensory processing difficulties (Horder et al., 2013, Bitsika et al 2014 ), – impaired adaptive behaviours (Kenworthy et al., 2010) – elevated cortisol (Brosnan et al 2009 ;Sharpley et al 2014,) – heightened physiological arousal (McDonnell et al 2013) 19
Research • Stress – Complicates seemingly simple everyday situations (e.g. home duties, public transport, informal social commerce, etc.) – restricts the ability and/or willingness to seek help and social support • The core symptoms of autism – associated with distress and coping – frequently bring about stressful situations in everyday life • Exposed to many stressful situations in everyday life while facing these situations with poor coping strategies and perceptions of high distress. (Hirvikoski & Blomqvist (2015) 20
Research perspectives Relationship of stress to wellbeing Cummins et al 2012 21
hat i s t he rel at i onshi p bet w een W st ressor event s and subj ect i ve el l bei ng ( ( S )? )? w W B High SWB ? Low ery W eak V ery V t rong S 22 Cummins 2012 Stressor
The Relationship Between Stress and SWB D i nant source of cont rol om I n cont rol eost asi s not i n cont rol H om D I S TR E S S High 75 SWB Low No stress High stress Toxic stress Stress Level of environmental challenge 23 Cummins 2012
Stress mechanisms Cortisol • Is an elevated level of the hormone Cortisol a proxy measure for stress? • Reported severity of autism correlates with higher level of Cortisol – could this be linked to stress demands from environment or internal factors? (Putnam et al 2015) • Linked to sensory processing in the vestibular domain (Bitsika et al 2011) • Psychosocial stress cited as a factor in neurodevelopment (McGinness 2007) • Elevated level of Cortisol maintained as a response to novel social encounters (Brosnan 2007; Bitsika et al 2011; Simon et al 2013) • Mixed evidence in studies and reviews (Putnam 2015; Brosnan et al 2013; Sharpley et al 2014; Bitsika et al 2015, Taylor and Corbett 2014) 24
Common issues facing autistic individuals • Perspectives of autistic women • Meltdowns and shutdowns 25
Autism in Pink workshops Stressors identified by autistic women • M asking of ‘autism characteristics ’ – ‘acting normal’ • Employment and relationship conflicts- shutdown and meltdown • Sensory overload = tiredness- fatigue- exhaustion-irritability – panic – meltdown – shutdown • Future insecurity – fear of the future-uncertainty 26
Stress - meltdown Meltdown • Widely described by autistic people • Not well defined clinically- confused with tantrum • Loss of control due to overwhelm – sensory, demands, flight /fight response • Affecting whole spectrum- exacerbated by communication problems • Related to physiological arousal 27
Stress - meltdown Summarized descriptions include: • A flood of conflicting signals • Overload • Loss of control • Chaos • Terror • Inability to communicate feelings or requirements • Breathlessness - Panic - Urge to escape Miller and Loos 2004 Lavigne 2005; McDonnell et al 2014 28
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