Improving Support for Autistic Adults: A Comprehensive Approach

1. AutismClair JonesStrategic Lead for Complex CareIan DavidsonLead Consultant CRAC ASD and RCPsych Autism Champion

2. National Picture 70% of autistic adults say that they are not getting the help they need from social services. 70% of autistic adults also told us that with more support they would feel less isolated. (Bancroft et al (2012). The Way We Are: Autism in 2012. London: The National Autistic Society) More than 1 in 100 people are thought to have Autism. That means approximately 700,000 people in the UK. Including families, Autism touches the lives of 2.8 million people every day in the UK. (www.autism.org) At least 1 in 3 autistic adults are experiencing severe mental health difficulties due to a lack of support(Rosenblatt, M (2008). I Exist: the message from adults with autism in England. London: The National Autistic Society, p3 Between 48% - 56% of autistic people do not have a learning disability. (www.autism.org) Autism costs the UK economy £32 billion a year, more than heart disease, stroke and cancer combined. (London School of Economics 2014) “I’ve always felt like the odd one out, that everyone communicates with information I don’t have” (user feedback)

3. Background • Autism is term used in the Autism Act and in recent guidance to cover all conditions within Autism Spectrum Disorder • Autism is a neurodiversity not a mental illness • Autism Act 2009 required government to have a national strategy and statutory guidance on implementation of guidance. Latest national strategy Think Autism 2014. Applies in England.

4. Statutory Guidance • Requires NHS and Local Authorities to • Provide Autism awareness training for all staff • Must provide specialist autism training for key staff such as GPs and community care assessors • Can’t refuse a community care assessment for adults based solely on IQ • Must appoint Autism lead in their area • Clear pathway to diagnosis and assessment for adults with autism • Need to commission services based upon adequate community data

5. Diagnostic Criteria • Diagnosis is a clinical diagnosis • Three main domains in ICD10 • Social Interaction • Communication • Rigidity/focal repetitive interests • DSM V now has 2 domains • Autistic traits common in general population so it is number and significance of traits critical to diagnosis

6. Diagnostic Tools • Current diagnostic tools such as Disco, ADOS, ADI all have weaknesses and all have proponents but none are “Gold Standard” • None replace need for a proper clinical assessment with developmental history • Tools such as AQ10 and AQ50 have some value in screening for those more likely to need a full assessment but are not diagnostic tools

7. Prevalence • There is debate as to whether prevalence increasing or better case finding. Probability mainly if not entirely the latter • Previous work missed many boys/men and girls/women who did not fit with an expected picture of boys with Learning Disability. • Is a neurodevelopmental disorder so must be evidence traits present from relevant developmental stages

8. Ideal Service • There is no current blueprint for this • Ideally all would be identified in childhood • All would have a strengths, needs and aspirations approach to assessment and ongoing interventions • Main issues needing treating likely to be co-morbidities rather than Autism but will need to identify what reasonable adjustments are for each person at various life stages. It is therefore vital that diagnostic assessment is not simply an Autism Yes/No report

9. WHY DOES IT MATTER

10. Autism in adults is still poorly understood • Prevalence rates are estimated in the range 0.8-1.5% of population reflecting current lack of knowledge • Most Autistic people alive today weren’t diagnosed at school • The diagnostic assessment is the only statutory requirement. There are very few examples of CCGs commissioning specialist post diagnostic services other than for complex tertiary inpatient care. Most Autistic people will therefore be accessing mainstream services for physical and mental health care needs

11. The Result is….. • Little is known about the course of Autism in adults and what promotes success • Research evidence increasingly suggests that it is comorbidities and the impact of negative life experience that create the major health issues • The research data suggest high rates of mental and physical disorders and up to 20 years premature mortality.

12. We need to mitigate risks • Much of this additional morbidity and premature mortality is avoidable or treatable • Autistic people can struggle with communication and social interaction so problems often missed or misunderstood • Autistic people experience very high rates of social exclusion including bullying and often develop mood and anxiety problems and increased rates of suicide

13. CWP Teams • There are no services in CWP commissioned to provide intervention with autistic adults without LD where ASD is the primary need (including no services for young people to transition to)- therefore people with significant health and social care needs directly related to their ASD need to go down an Individual Funding Request route for bespoke intervention or do not receive treatment, resulting in potential crisis/deterioration, increased risks and costs. • The only service specifically commissioned to work with autistic adults without LD is the CRAC ASD Assessment and Diagnostic Service.

14. Complex Recovery Assessment and Consultation Team -Autism Spectrum Disorder Assessment and Diagnostic Service CWP Trust-wide Pathway

15. Aims and objectives of the ASD Assessment and Diagnostic Service • Aims and objectives • To provide: • a diagnostic service for adults who may have Asperger’s Syndrome or a high-functioning autism condition in Cheshire and Wirral; • a timely diagnosis in respect of individuals who may present with conditions that would place them on the Autism Spectrum; • a locally managed diagnostic service that incorporates best clinical practice with respect to adults with ASD; advice regarding ongoing support post-diagnosis.

16. Criteria for referral for Autism Spectrum Disorder Diagnostic Assessment • Referral criteria & sources • Referral criteria will be: • adults aged 18+ (16+ for West Cheshire, South Cheshire and Vale Royal CCGs) • adults who after use of an initial screening tool (AQ10) are judged to be in need of an additional diagnosis • Exclusion criteria • People who have an established diagnosis of Autistic Spectrum Disorder • People aged under 18 at the time of referral (referrals made when the client is within 6 months of their 18th birthday will be considered) (16 for West Cheshire, South Cheshire and Vale Royal CCGs) • People who are screened and do not score more than 5 on the AQ10.

17. Referral pathway for an Autistic Spectrum Disorder Diagnostic Assessment for adults without an intellectual disability (NICE clinical guideline CG 142). Referrals from CWP secondary care services with rationale for assessment and completed AQ10 (score of 6 or above) sent to team and copied to SPA Referrals from GP with rationale for assessment and completed AQ10 (score of 6 or above) sent to SPA SPA paper screen, log and email details to The Complex Recovery Assessment and Consultation Team ASD Service Specialist ASD Service NICE compliant, multidisciplinary Diagnostic assessment with individual and their chosen informant 1 x post diagnostic review appointment Review ASD report Discuss findings and recommendations Give information on ASD, Autism Alert card, Hospital passport and statutory and third sector services. Information about Care Act Assessment Discharge with Advice Feedback to GP and when appropriate other services already involved in the individual’s health and social care , including any recommendations and any advice on reasonable adjustments.

18. Our assessment Process • Questionnaire sent out • Once questionnaire returned assessment appointment sent out. Person requested to bring an informant with them • Venues for assessment are Birkenhead, Crewe, Winsford, Chester and Macclesfield

19. The Assessment • At the assessment person seen by psychiatrist for 30 minutes whilst OT sees informant and then swap over for 30 minutes • Information from face to face plus questionnaire, plus referral (and from carenotes if already known to CWP) pulled together into draft report

20. Nothing about you without you Draft report sent to person (and encouraged to share with informant) to check if reasonable summary or if corrections or clarifications required and requested that these are brought along to the post diagnostic review.

21. Post diagnostic review Post diagnostic review is completed by the OT- final confirmation of opinion, chance for person to discuss and ask any questions about the report. Information given including advice on reasonable adjustments, local charitable offers, an autism alert card and hospital passport and any signposting- referral to other services.

22. Ifan adult can access an assessment for an autism diagnosis they can identify their own strengths, needs and aspirations enabling them to build on their strengths and skills and access reasonable adjustments to optimise their functioning.

23. Reasonable Adjustments • It helps them and key others to see their strengths and reduces mood and related issues • It makes it easier to identify and deliver reasonable adjustments • Reasonable adjustments can enable Autistic people to have much more successful lives • Many will have contact with multiple physical and mental health and social care services due comorbidities • Health and social care staff knowing how to respond appropriately to Autistic people including reasonable adjustments can help make significant differences

24. Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg. Paul Collins, Reproduced by Patient Talk.org

25. Feedback to the GP • GP gets confirmation letter that person has attended the appointment (or earlier letter if person not responded to service contacts). This indicates who was seen by whom and any immediate opinion plus any urgent advice if appropriate • After post diagnostic review GP gets discharge letter confirming diagnosis/es and what has been shared with person and any recommendations to the GP plus a copy of the full report for information

26. CWP Picture • 2149 people have been recorded on Carenotes as having ASD and having been open to CWP. • 965 people with ASD are open to CWP currently with 918 having started treatment. • 183 people open to AMHT/ EIT/ CRAC MH team • 284 people open to CLDT • 289 people open to CAMH Teams • 224 Autistic adults are open to the ADHD Team

27. Transforming Care Partnership and Five Year Forward View for autistic adults without LD Strengths Needs Aspirations

28. Conclusion • Local CCGs have increased access to Adult Autism Diagnostic services in recent years to complement those in childhood and Learning Disabilities • Knowing which traits apply to an individual helps in making reasonable adjustments • Autistic people are generally poor at seeking help and often seriousness of their comorbidities missed as they don’t give typical non-verbal communication • Most of the premature multiple morbidities are treatable and most of premature mortality is avoid

30. Further Reading/information: Hospital Passport file:///C:/Users/PGUser876/Downloads/My%20Hospital%20Passport.pdf RCGP Autism Toolkit http://www.rcgp.org.uk/clinical-and-research/toolkits/asd-toolkit.aspx Lenehan Review https://www.gov.uk/government/publications/lenehan-review-into-care-of-children-with-learning-disabilities Know your normal https://www.ambitiousaboutautism.org.uk/know-your-normal Police Autism Guide http://www.npaa.org.uk/police-autism-guide/ Think Autism https://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategy Presentation of Autism in children http://www.asdinfowales.co.uk/autismchildsigns

31. Thank you Clair Jones Strategic Lead for Complex Care clair.jones@cwp.nhs.uk Ian Davidson Lead Consultant CRAC ASD and RCPsych Autism Champion ian.davidson@cwp.nhs.uk