1. Autism Clair Jones Strategic Lead for Complex Care Ian Davidson Lead Consultant CRAC ASD and RCPsych Autism Champion

2. National Picture
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. (
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 London: The National Autistic Society)
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. (
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 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 % 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. CWP Trust-wide Pathway
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
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 GP with rationale for assessment and completed
AQ10 (score of 6 or above) sent to SPA
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
SPA paper screen, log and 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. If an 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. Strengths Aspirations
Transforming Care Partnership and Five Year Forward View for autistic adults without LD
Build stronger communities to promote optimum function, health and well being for autistic adults
If community health input is required ensure it is effective and reasonable adjustments are considered
If MH inpatient treatment is required –utilise CTRs, use effective care planning and ensure discharge at earliest opportunity
If out of area treatment is required- to ensure effective co-ordination, regular specialist review and integrated work to support repatriation
Release investment from reduced inpatient use and out of area placement to reinvest in communities
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
Lenehan Review
Know your normal
Police Autism Guide
Think Autism
Presentation of Autism in children

31. Thank you Clair Jones Strategic Lead for Complex Care
Ian Davidson
Lead Consultant CRAC ASD and RCPsych Autism Champion