I Exist: The message from adults with autism in the UK

1. I Exist: The message from adults with autism in the UK Amanda Batten & Sarah Redman

2. Overview of Presentation During this presentation we will… • Administer a short Quiz • Examine the I Exist Report • Explore what UK Governments are doing • Discuss what the Department of Health should include in the planned autism strategy • Play a Short DVD

3. Quiz: True or False? Tell us if the following statements are True or False • Only 42% of adults with autism who responded to our survey had had a needs assessment from their local authority as an adult • 50% of adults who responded to the I Exist survey said they did not have enough support to meet their needs • The independent review of autism services in Northern Ireland described services for older adolescents and adults as almost totally absent • DH Minister Ivan Lewis has been on a skateboard

4. I Exist Report • I Exist is the message from adults with autism • I Exist examines the experiences of adults with autism and Asperger syndrome who struggle to get the understanding and support that they need

5. I Exist Report: Methodology Used 4 different methods for collecting data • Administered three separate surveys • Adults with Autism (18 and over) and their families/carers • Local Authorities (LA) • Primary Care Trusts (PCT) • Conducted in depth interviews

6. Adult questionnaire 1412 people completed the first section of the questionnaire. 1179 people completed the second part of the questionnaire. 773 parents and carers responded to the third section of the questionnaire. Local Authority questionnaire 35% response rate 53 surveys completed Primary Care Trust questionnaire 16% response rate 24 questionnaires completed I Exist Report: Responses

7. I Exist Report: Findings Improved understanding and record keeping is crucial • 67% of local authorities and 77% of primary care trusts surveyed said that they do not keep a record of how many adults with autism live in their area • 65% of local authorities do not know how many adults with autism they actually support “We are currently not fully aware of local need or demographics. We need to undertake [this count] to enable uniform service provision” -Local Authority

8. I Exist Report: Findings (continued) Major barriers to social care and health services are significant • Only 42% of adults with autism who responded to our survey had had a needs assessment from their local authority as an adult • 45% of local authorities surveyed do not have a process in place to address the needs of people with autism who do not fulfil the criteria of the learning disability or mental health team • “Service silos mean ASD doesn’t fit. ASD falls between service areas” • -Local Authority

9. I Exist Report: Findings (continued) The needs of adults with ASD and their families may be misaligned with the service provision locally. • 63% of adults who responded to our survey said they did not have enough support to meet their needs • Of those, 70% said that they could live more independently with right support • Considerable discrepancy between the types of services that people receive and what they want

10. I Exist Report: Findings (continued) Social care staff and others need more training in ASD • 63% of LAs who completed our questionnaire said that support workers are insufficiently trained in ASD • 56% said that ongoing professional development training was also inadequate • “[My son] has 24-hour care in his home, but they are not appropriately trained or aware” • -Parent

11. What are the UK governments doing?

12. Scotland Scottish Executive set up an ASD reference group (PHISS report 2001)

13. Wales The National Assembly for Wales: Welcomes the Welsh Assembly Government’s publication of an action plan for autistic spectrum disorders, but notes that without further work to tackle the specific difficulties that adults with autism face, they will remain isolated and ignored.

14. Northern Ireland Independent Review into autism services in Northern Ireland chaired by Lord Maginnis reported in June 2008: The independent review of autism services in Northern Ireland described services for older adolescents and adults as almost totally absent

15. England In May 2008, the Department of Health announced a major commitment to improving the lives of adults with autism

16. Final Quiz Answer True!

17. Research into the number of adults with autism A small scale study led by Prof. Terry Brugha to give the first prevalence estimate of ASD in adulthood Stage 1: Screening for ASD as part of the 3rd Adult Psychiatric Morbidity Survey of ‘intellectually able’ householders in England Stage 2: Screening for ASD from a stratified random sample of 620 adults with learning disability from the Leicestershire LD register • Both stages use ADOS and DISCO to assess for ASD • The two populations will be compared to achieve an overall prevalence estimate • Results to be published in two stages next summer

18. Building autism expertise in DH Recruited an Autism Adviser to champion autism within the Department • Elaine Hill will start the post in October 2008. • She will: • Lead on the development of an adult autism strategy • Support policy work across the department • Provide expert professional advice

19. Research, training and guidance Several other activities are underway • Research into the needs of young people with autism at transition • Initiatives to raise the profile of autism with professionals • Commissioning guidance

20. All of this is leading to... A National Strategy for Adults with Autism?

21. Opportunity for Feedback Have your say about the National Strategy for Autism • Assigned small group discussions • Think about and discuss: • What are the key things you think the strategy should address? e.g. What services should they include? What issues should DH consider? • How should the strategy be implemented? e.g. Who should be involved/consulted?