1. 1 Stress in autistic people 1.Stress, cortisol and behaviour 2.Autism, sleep and Quality of Life Mark Brosnan M.J.Brosnan@Bath.ac.uk Autscape2010

2. 2 Stress is the feeling of being under pressure. A little bit of pressure can be motivating. However, too much pressure or prolonged pressure can lead to stress, which is unhealthy for the mind and body. It can cause symptoms such as difficulty concentrating and sleeping, sweating and lack of appetite. Stress may cause further health problems such as high blood pressure, anxiety and depression (NHS, 2010).

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4. 4 Alarm - detection of novelty –‘flight or fight’ response –(or ‘fright, flight or fight’ response) Resistance – if the stressor persists the stress needs to be coped with. Exhaustion – the body is no longer able to cope with the stress

5. 5 Autscape2010 Detection of novelty (or unexpected change) releases cortsiol (alarm) –‘The stress hormone’, detected in saliva –Regulated by the brain (resistance) –Amygdala Hippocampus The Cortisol Awakening Response (CAR) 2-3 times increase in cortisol in the first 30 minutes upon awakening, then decreases over the day.

6. 6 Autscape2010 Typically, cortisol rises rapidly in the morning and declines over the day Unexpected changes in routine can be viewed as positive and can be motivating. The change would be detected (alarm - cortisol rising), evaluated as non- threatening (resistance - cortisol declining) What about autistic people?

7. 7 Autscape2010 Several studies report morning and evening cortisol levels seem typical in autistic people. One study found lower levels of cortisol in autistic people. How can this be? Time of testing? We tested the Cortisol Awakening Response (CAR) in 20 male students with Asperger Syndrome

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10. 10 Autscape2010 Autistic adults and children have been found to display an exaggerated cortisol response to stress compared to TD with a mild stressor. Also to display a cortisol response when no response is shown by TDs Could this be related to the lack of cortisol awakening response?

11. 11 Autscape2010 Repetitive and restricted behaviours (RRBs) are a core feature of ASD Described as a dysfunctional ability to adapt to novel experiences and environments, clinically referred to as a ‘need for sameness’ or ‘resistance to change’ (APA, 2000; Kanner, 1943), hereafter referred to an Insistence on Sameness (IoS).

12. 12 Autscape2010 CAR Insistence on Sameness

13. 13 Autscape2010 Hypothesis: The reduced Cortisol Awakening Response results in a decreased ability to regulate the cortisol stress response. Insistence on Sameness is a strategy to reduce novelty (and consequently reduce stress as it is difficult to regulate)

14. 14 Autscape2010 Parents and autistic people contacted me as autistic people can report poor sleep quality – is this related? Online survey to answer this question. ‘My aspie son can deal with some changes and can be quite spontaneous but after 7PM’ (Aspies for Freedom)

15. 15 Autscape2010 Quality of Life is central to well-being The World Health Organisation (WHO) defines Quality of Life as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.

16. 16 Autscape2010 Improving quality of life is a universal goal and does not assume ‘disability’. Research associated with quality of life for autistic people is lacking. The WHO measure is an adequate and appropriate instrument in the assessment of caregivers of autistic children. Research is needed in order to include the perspective of those with a diagnosis of ASD in the evaluation of service provision.

17. 17 Autscape2010 In conclusion: Assessing quality of life in those with a diagnosis of autism/ Asperger syndrome using the WHO measure is the next step Understanding quality of life will enhance well-being through a better understanding of stress as perceived by those with a diagnosis of autism/ asperger syndrome.

18. 18 CyComp2010 Thank you for listening. Do you have any questions or comments? Contact: M.J.Brosnan@Bath.ac.ukM.J.Brosnan@Bath.ac.uk ASC sleep survey: http://people.bath.ac.uk/pssmjb/ http://people.bath.ac.uk/pssmjb/ ASC quality of life survey: Tinyurl.com/ascqol