Adult Autism Team NHSGG&C. Dr Gwen Jones Edwards Anne Marie Gallagher

Transcription

1 Adult Autism Team NHSGG&C Dr Gwen Jones Edwards Anne Marie Gallagher

2 A "perfect storm is an expression that describes an event where a rare combination of circumstances will aggravate a situation drastically. (Wikipedia)

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4 Impact on physical and mental health Croen, L., Zerbo, O., Quian, Y. and Massolo, M.L. (2014) Study of all adults enrolled in Kaiser Permanente health care programme (N~2.5 million) Found 2,108 cases with ASD diagnosis, and chose matched controls at a 10:1 ratio (length of membership, age and gender) Compared the prevalence of psychiatric, behavioural, and medical conditions overall and by sex, age group, and race/ethnicity between cases and controls.

5 Lisa Croen (2014), Kaiser Permanente research division

6 Impact on physical and mental health Adults with ASD had significantly increased rates of depression (38% vs. 17%), anxiety (39% vs. 18%), bipolar disorder (8% vs. 1%), suicide attempts (1.6% vs. 0.3%), Prevalence differences between cases and controls increased with age.

7 3 easy questions Is there a significant impairment of social interaction? Is there a strong need for the maintenance of sameness or repetitive behaviour? Has this been lifelong? Easy!

8 Social Interaction

9 Impairment of social interaction Video links Paraphrased/condensed ICD10 Non verbal communication Friends Understanding emotions Sharing interests

10 Repetitive behaviour Paraphrased/condensed ICD10 Interests Routines Repetitive movements Sensory differences

11 Tips for gathering information Involvement of families developmental questionnaire. Prepares informant, leads questioning for interview, distant relatives. Informant who Help remember, relationship in family, specific events, playground Miss Marple, Taggart, Bergerac, Cracker, Cagney and Lacey which one are you? Time is of benefit for our whack a moles.

12 Some interesting developments SIGN NICE, RCPsych guidance DSM V, ICD 11. Autism Strategy Maximising Outcomes Training Framework Self help, self management Expert Patient Programme (NHSGG&C).

13 Expert Patient Programme Structure participants or 4 6 couples Mostly are recently diagnosed, some young adults who were diagnosed by child services, and some return patients weeks group work followed by 2 X 1 hour individual sessions. 2 hours per week

14 Expert Patient Programme Content of group work Information exchange about ASD, diagnostic criteria and challenges for those with ASD Triad of impairments Theories in autism Communication Relationships Sensory issues Structure and planning Personal reflection and discussion

15 Expert Patient Programme Discuss personal learning and help the patient identify and develop a narrative that can describe their ASD and what they need in their lives to keep healthy and safe. Common tools Individual Sessions Individual guide Pressure cooker Creative writing Wave visual

16 Individual guide How I can help myself Try and establish a routine. If necessary, make a timetable Try to strike a balance there s a fine line between being busy and fulfilled and being stressed and overwhelmed. Re. the above say no sometimesmake sure I have some quiet times even an hour is beneficial. Keep the environment in good state Individual Guide How I can help myself Yes, I am on the autism spectrum and yes, I know I seem normal and in fact in a lot of ways I am pretty normal. Please don t assume that you know who I am, because of my condition, or because you know someone else who is also on the autism spectrum. We are individuals. Don t assume I know what you re thinking or how you re feeling. TELL ME!I find it hard to deal with competing noise. If you want to say something important to me, choose a quiet place. Having autism is hard work. Activities, even those I like, with people I like tire me out more than the average person. Re. the above: On a night out there may come a time when I stop talking. I m fine, I m still having a good time. I m just having a break.

17 Individual guide - statements Ask others to read this If one of my favourite topics arises-slow DOWN! Use people that I trust to understand social norms Regularly express my understanding of what has been said in order to double-check its validity. If I think something is obviously stupid, say nothing immediately. They may come to realise on their own. Using a pen and paper slows down the rate of information given by others

18 Pressure cooker

19 Outcomes from EPP group Quality of life Short form of Warwick-Edinburgh Mental Wellbeing Scale (7 items) (n=9): 39.6 (pre-test) : 44.1 (post-test) Median Population score: 50

20 Outcomes from EPP group Clinical outcomes / symptom change Kessler-10: psychological distress scale (n=9): 28.3 (pre-test) : 21.9 (post-test) < 20 (likely to be well); (likely mild mental disorder); (likely mod mental disorder); 30+ (likely severe mental disorder) 1 in 4 patients in primary care will score >20

21 Outcomes from EPP group Acceptance and Action Questionnaire - AAQ (16 items): psychological flexibility & distress tolerance AAQ (n=7): 32.1 (pre-test) ; 23.5 (post-test) No clinical cut-offs provided; individuals are likely to experience distress

22 The perfect storm How can we help?