Adults with ASD in the Mental Health System

1. Adults with ASDin the Mental Health System Dr. Mike Jackson Consultant Clinical Psychologist mike.jackson@wales.nhs.uk Louise Brookwell, Chris Lavender Assistant Psychologists Funded by : WAG Autism Strategic Plan Dr Lisa Williams Trainee Clinical Psychologist

2. Adults with ASD in the Mental Health System Project Aims 1. Numbers – how many adults with ASDs are in the AMH system ? • With a diagnosis ? • Without a diagnosis ?

3. Adults with ASD in the Mental Health System Project Aims • Care Pathways – What happens to Adults with ASDs in the AMH system ? • diagnoses, • medication, • hospital admissions, • social functioning

4. Adults with ASD in the Mental Health System Project Aims 3. Experiences – What are the different stakeholder perspectives ? • Adults with ASDs • Parents • Mental health workers • Psychiatrists

5. Adults with ASD in the Mental Health System 1. Numbers – how many adults with ASDs are in the AMH system ? Comprehensive Survey of two CMHTs Include all ‘care managers’ Review case notes for possible cases Include diagnosed and ‘highly probable’

6. Adults with ASD in the Mental Health System 1. Numbers – how many adults with ASDs are in the AMH system ? Undiagnosed cases : • Extract Anonymised information – presentation and history • Checklist based on ICD-10 • Independent rating • Only include ‘highly probable’

7. ‘Probable’ case outline Luke – Age 57 lives independently No friends or relationships throughout his life High academic achiever – PhD Worked as an ambulance driver but found it very stressful resulting in a breakdown Worked as a technician performing scientific analysis of samples entirely on his own, he felt this was the best time of his life Difficulty interpreting social cues and maintaining eye contact Two suicide attempts Referred to LD team but rejected due to high IQ now seeking diagnosis from AMH Adults with ASD in the Mental Health System

8. ‘Probable’ case outline 2 Claire – Age 30, lives independently Early speech delay Childhood, isolated from peer group, bullied In childhood it was suggested she may has AS but this was not followed up Social interaction impairments are evident Obsessive behaviours and rigidity to non-functional routines High levels of concrete thinking Several suicide attempts resulting in inpatient admissions Unusual memory for facts, knows the name and height of all cathedrals in the UK

9. Incidence data Adults with ASD in the Mental Health System

10. 1. Numbers – how many adults with ASDs are in the AMH system ?Prevalence estimates Estimated 1.5% of AMH caseload meet criteria for ASD In North Wales = approximately 70 adults with ASD using AMH services. Half of these are not diagnosed These figures are probably underestimates. General population : 0.6% use AMH service ASD population : 2.9% use AMH service

11. 2. Care Pathways – What happens to Adults with ASDs in the AMH system ? Adults with ASD in the Mental Health System Detailed examination of case notes of individuals with diagnosed or probable AS All extracted information anonymised at source

12. 2. Care Pathways • N = 29, but only two females • Age range 18 – 61 years Low functioning : • 90% unemployed • 95% single • 31% living independently Adults with ASD in the Mental Health System

13. Adults with ASD in the Mental Health System

15. Care Pathways • Lifetime hospitalisations = 3.2 • Anti-psychotics widely prescribed • Repeated referrals between LD and AMH services Adults with ASD in the Mental Health System

16. Qualitative studies Adults with ASD in the Mental Health System Adults with ASDs : N= 6 Parents N= 7 Mental Health workers N= 6 Psychiatrists N= 4 Interpretative Phenomenological Analysis • Identifying Themes within and across participant groups

17. Adults with ASDs - themes AS and identity : • ‘It is something that worries other people a lot more than it does me’ • Unkind people would consider me somewhat freaky, even inferior, not that I do – well not nowadays anyway • I have never felt that I am human or that I am part of humanity...I don’t believe that I have a human mind... the whole world is separate from me

18. Adults with ASDs - themes Needs of the individual with AS : • ‘I would love to live with a partner’ • ‘So there is someone there when I need to talk to someone, when I am miserable .. making me feel better in terms of a human being I guess’ Relationships with health workers : • She [hospital nurse] said to me, “oh you’re loopy are you?” I thought you’re not supposed to say things like that • Some people are incredible the way they talk down to you

19. Adults with ASD in the Mental Health System Adults with ASDs - themes Issues with services : • ‘I had trouble finding any support’ Interventions : • he said to me a lot of things can be solved and dealt without swearing which is something I did not know. ...say “please be quiet”, walk away, or just accept what he has to argue about. You see, it’s already three solutions isn’t it! • I said to him what can you do to get rid of my depression? He said just take some antidepressants, which to me, oh that sounds a bit easy. ….. the doctor said they will definitely work and make you not depressed after two weeks Coping Strategies : • ‘I used to pretend, put on an act’

20. Adults with ASD in the Mental Health System Parent’s themes Growing up with AS • ‘I wasn’t aware he had AS but I knew he was different.’ Getting a diagnosis and accessing services • ‘We were neither but we were both and we were inbetween. We fell in the gap..’ Lack of understanding and support needs • ‘That kind of sums it up, lack of information, lack of support, no understanding of AS.’

21. Adults with ASD in the Mental Health System Parent’s themes Issues of supporting in adulthood • ‘By this time he is an adult so I was cut off’ • “all these drugs he is on now, he is like a zombie” Future uncertainty • ‘That worries me, once I am not here’ Family issues • ‘the war is 24 hours a day’

22. Mental Health Workers Adults with ASD in the Mental Health System Issues for the individual with AS • He feels like he’s scum, he’s a leech…’cos he’s on benefits he doesn’t contribute anything • They’ve thrown eggs at the house, bricks, and been called quite horrible derogatory names as well around his disability

23. Mental Health Workers Adults with ASD in the Mental Health System Issues for MHW’s • ‘There’s nothing two-way there’ • It’s interesting because it’s a new field for me…totally different to what I deal with most days • I don’t know which way to go to be honest and how best to help him” • I’ve been a qualified mental health nurse for 14 years now and, I feel that I don’t know enough about it” • I thought I’m going to have real problems here…because I don’t understand the illness that well…I felt I’d probably be treading on egg shells a lot” • Strategies employed by MHW’s ‘Very clear boundaries’ • Getting that person in a situation where they feel relaxed and calm, their speech will sometimes slow down, they’ll sometimes be able to listen and turn-take better than previously • Service issues ‘People don’t fit nicely into these little boxes’ • There is a sense of gate-keeping now to such an extent that they’re looking for anything that means they can ‘sign-post’ them on to another team. • Diagnosis‘It [diagnosis] changes from clinic letter to clinic letter’ • Where he’s constantly talking, fluctuating - his mood’s all over the place - but I find that hard to decide whether it is bipolar because of the diagnosis of autism as well and the concrete thinking but also because he’s got a diagnosis of ADHD as well, which I’m not sure if that comes into it “

24. Mental Health Workers Strategies employed by MHW’s • ‘Very clear boundaries’ • Getting that person in a situation where they feel relaxed and calm, their speech will sometimes slow down, they’ll sometimes be able to listen and turn-take better than previously Service issues • ‘People don’t fit nicely into these little boxes’ • There is a sense of gate-keeping now to such an extent that they’re looking for anything that means they can ‘sign-post’ them on to another team.

25. Mental Health Workers Adults with ASD in the Mental Health System Diagnosis • ‘It changes from clinic letter to clinic letter’ • Where he’s constantly talking, fluctuating - his mood’s all over the place - but I find that hard to decide whether it is bipolar because of the diagnosis of autism as well and the concrete thinking but also because he’s got a diagnosis of ADHD as well, which I’m not sure if that comes into it • They’ve been unsure and they’ve just added diagnoses as they’ve gone along…I think it makes him feel worse

26. Adults with ASD in the Mental Health System Psychiatrists Theme : ASD and the system so what does happen to the referrals ? P: well I try to bounce them to where ? P: with these kinds of people I would try and twist our psychologist’s arm to consider seeing them and otherwise I say to the GP we haven’t got a service and that’s that

27. Psychiatrists diagnosing ASD is probably one of my weakest things when I look at my sort of overall skill mix I find it boring … because its not very sort of obvious its quite thankless …. and it needs specific expertise and a lot of resource in terms of time to actually achieve something positive for the patient I always have to think about whether that is money well spent because there are always other people waiting where I know that possibly the intervention can achieve a lot more, particularly when my staff really aren’t the experts in dealing with that kind of problem either

28. Qualitative studies : Common themes Adults with ASD in the Mental Health System • Eligibility Criteria – Adults with ASDs do not fit into the AMH system or statutory services available “I had trouble finding any support, there wasn’t a service or a category for it...I think [mum] managed to get me in through the back door really ” Every time it has been like walking into a brick wall, they keep saying no, well you have got AS or autism, but it is such a mild form that you don’t qualify – Adult with AS “I don’t believe that mental health services see themselves as supporting people with Asperger’s or autism spectrum” – Mental Health Worker

29. Common themes Adults with ASD in the Mental Health System • Eligibility Criteria – Adults with ASDs do not fit into the AMH system or statutory services available “When you go to mental health you either go to social services or the mental health learning disability and we were neither but we were both and we were in between. We fell in the gap” – Parent I say to the GP we haven’t got a service and that’s that Psychiatrist

30. Common themes Adults with ASD in the Mental Health System 2. Lack of strategic approach 3. Poor level of understanding, lack of specialists 4. Problems around diagnosis and treatment

31. Limitations • Uncertain level of error in the method – requires more comprehensive assessment of CMHT caseload • Lack of focus on social services

32. Service Developments • Specialist role nucleus – development of research/ service ? • Service : Socialeyes + support – Advocacy, legal • Issue of what AMH should provide – provision for mental health problem or ‘core deficits’ ? • ASD development workers in social services • NAS developments • HE/ FE

33. Research Developments • Psychosis project/ historical/ epidemiology • Evaluation of Intervention : SocialEyes plus individual CBT and support • Adult Psychiatric Morbidity Survey, 2007

34. Recommendations Adults with ASD in the Mental Health System • Current eligibility criteria for AMH services should be reviewed to take account of the special issues arising in the ASD population. • Accessing diagnostic service • Getting AMH support services

35. Recommendations Adults with ASD in the Mental Health System 2. There should be a dedicated, specialist service for adults with ASDs and high levels of support needs, within AMH • Assessment/ Diagnosis • Individual therapy • Group SocialEyes • Partnership working – CFE/ NAS etc

36. Recommendations Adults with ASD in the Mental Health System 3. Mental Health services should take full account of the long term needs of adults with ASDs and mental health problems • Strategic, long term approach • Consistent, stable care manager • Low intensity support • Less hurry to close cases

37. Recommendations Adults with ASD in the Mental Health System 4. There is a pressing need for more training in understanding and working with ASDs, for AMH staff • General awareness training for all MH staff • Specialist training within core services (CMHTs, In-patient)

38. Recommendations Adults with ASD in the Mental Health System 5. The possibility of unrecognised ASDs should be routinely considered in assessment of MH patients. • Again, need for training