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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
Richard Mills Research Autism and University of Bath June 2016
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negative impact on self esteem and confidence negative impact on sleep negative impact on mental health current strategies not effective
Autistic adult survey responses The Research Autism survey 2016
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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?
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In the last month, how often have you felt that you were unable to control the important things in your life?
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In the last month, how often have you felt nervous and “stressed”?
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In the last month, how often have you felt confident about your ability to handle your personal problems?
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In the last month, how often have you felt that things were going your way?
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In the last month, how often have you found that you could not cope with all the things that you had to do?
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In the last month, how often have you been able to control irritations in your life?
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In the last month, how often have you felt that you were on top of things?
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In the last month, how often have you been angered because of things that were
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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 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.
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– a high level of subjective stress and – a perception of low coping ability regarding stressors in everyday life
– the perception of stress and distress and – coping ability
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– 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)
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– 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
– associated with distress and coping – frequently bring about stressful situations in everyday life
these situations with poor coping strategies and perceptions of high distress. (Hirvikoski & Blomqvist (2015)
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Cummins 2012
V ery W eak V ery S t rong Stressor
High Low
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Stress High Low
No stress High stress Toxic stress
Cummins 2012 23
Cortisol
this be linked to stress demands from environment or internal factors? (Putnam et al 2015)
encounters (Brosnan 2007; Bitsika et al 2011; Simon et al 2013)
Sharpley et al 2014; Bitsika et al 2015, Taylor and Corbett 2014)
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Meltdown
response
problems
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Miller and Loos 2004 Lavigne 2005; McDonnell et al 2014
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The beginning
input coming in and my ability to process it.
people with sensory processing disorders and autism that balance can be a lot more delicate.
your coping reserves, so some days there’s just not a lot left in the
there’s too much input flooding in for me to deal with or too little resources left to cope with the regular amount of input.
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The beginning
differ from day to day, but usually include these kinds of things...
– Too many people talking to me at once – Having attention on me – Someone talking to me while I’m trying to think or write something – Noise of a certain pitch which really hurts my ears – Needing to use the phone (which I find incredibly overwhelming) – The wind in my face – Someone reprimanding or confronting me – Feeling embarrassed, vulnerable or powerless – People around me not following the rules – Being frustrated from things not going right or my body letting me down – An unexpected change of plans – Someone I don’t know starting a conversation with me I can intervene at this point and head it off at the pass, but if I don’t or can't then this simmering tension will start to build.
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The build-up
there’s pressure or buzzing in my ears building towards
harder to process, both incoming and outgoing
defence reaction, like a lion tamer cracking his whip at the approaching threat. I’ll stim if I can - mostly hand wrenching, pressing my thumb into my palms, biting my fingers, rubbing my face, clenching my fists, clapping or tapping my hands together (connecting with my hands is important). I might also try to communicate what’s going on, but probably won’t make much sense.
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The peak
sense becomes acute, especially hearing. My ears start to hurt
deal with) is batted away as I try to escape and find mental breathing space. I’ll attempt to physically retreat (by looking away, moving away, putting sunglasses on) or verbally retreat (by arguing, changing the topic, ending the conversation)
completely shutting out all input there's very little that will stop the meltdown from progressing
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The ‘explosion’
action (meltdown). I will retreat completely - all stimming, language and functioning stops - or I will yell, storm off or slam something.
because nothing feels good at this point.
actually the final few minutes of a process that may have taken hours or even days to develop.
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The resolution
fatigue.
anger or disappointment (because meltdowns really suck). All of this can be enough to set off another meltdown, and this vulnerable stage can last for the next few hours and sometimes even all day.
write, as even the process of describing them was enough to trigger the start
without saying that because no two bodies work in exactly the same way, this is not a definitive description of how everybody experiences them.
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Some tricks I’ve learned to help me cope
better at managing them.
how to recognize when I might be on the road to having one, what works to avert them and how best to cope if I can't do that.
made a very big difference in the number and intensity of the meltdowns I experience.
known much earlier in my life
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‘Escape routes’
yourself understood
stress
uncomfortable situations
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Miller and Loos 2004
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Summarized descriptions include:
shut-off
Miller and Loos 2004
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do everything right away you will be in big trouble and you don't know what to do first so you stand there being yelled at
Miller and Loos 2004
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Case study: Progression of stress response to shutdown
Action by adult Task presented -- Pressures child to respond --
Time
Action by child
I I I I I I I I I I I I I
*shutdown unavoidable unless child given rest.
Miller and Loos 2004 47
Conclusions
activities) and heighten the risk of ill health of the accumulated lifetime stress (McEwen, 2004)
assessment of autism.
management of stress in everyday life (Pahnke et al., 2013).
interacts with cognition (both general intellectual ability and executive functioning), perception, adaptive behaviours, and psychiatric
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stress a significant issue difficult to find support for child negative effect
education or work negative effect on child's behaviour negative effect on child's relationships difficult to find support in dealing with family stress
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Parent/carer survey responses The Research Autism survey
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Stressors confronting families of autistic individuals
(Marcus, Kunce and Schopler (1997- 2005)
(Wing and Mills 2004)
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stress profiles across mothers (a) who lived in different cultural-geographic environments; (b) who had children of different ages; and (c) who had children with different functioning levels
across each of these subgroups.
aimed at reducing stress in specific areas in families with autistic children. (Koegel et al 1992)
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rather than staff
nature of clients and demands of the environments staff work in
knowing and managing themselves more effectively
forward?
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Take home points
affecting wellbeing and quality of life
perspective- autistic individuals suffer higher levels of stress, more frequently and for longer
autistic individuals, families and carers and professionals
involving all of the groups affected
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