Joint strategic needs assessment

Autism (2019)

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Topic title	Autism (2019)
Topic owner	Mental Health, Autistic Spectrum Disorders and Learning Disabilities Integrated Steering Group
Topic author(s)	Anna Oliver, Veronica Price-Job and Felicity Britton
Topic quality reviewed	October 4th 2018
Topic endorsed by	Mental Health, Autistic Spectrum Disorders and Learning Disabilities Integrated Steering Group, October 23rd 2018
Topic approved by	Health and Wellbeing Board January 2019
Current version	January 2019
Replaces version	2012
Linked JSNA topics	End of life care for adults

Executive summary

Introduction

Autism is “a lifelong neurodevelopmental condition, the core features of which are persistent difficulties in social interaction and communication and the presence of stereotypical (rigid and repetitive) behaviours, resistance to change or restricted interests”[1]. The way that autism is expressed in individual people differs at different stages of life.

Adults with autism face many challenges. Often, they also have co-occurring conditions such as learning disabilities or mental health problems. Those who have higher functioning autism feel they have a ‘hidden’ condition which is not easily recognised or understood by professionals or the public.

This Joint Strategic Needs Assessment (JSNA) will use the term ‘autism’ as an umbrella term for all such conditions, in line with the terminology adopted by key representative organisations such as the National Autistic Society. The chapter will focus on adults with autism however, as part of our understanding of the health and wellbeing needs of this group, the issues faced within childhood may be touched upon.

Diagnosis and prevalence

Adult Autistic Spectrum Disorder (ASD) is often under-diagnosed, under-reported and misdiagnosed[2], largely due to the social and communication difficulties listed above. As there is no definitive test for ASD, diagnosis is based on the range of features evaluated by a combination of specialists who work together to make an assessment.

It is estimated that around 700,000 people in the UK may be autistic, or more than 1 in 100 in the population. The Adult Psychiatric Morbidity Survey (APMS) (2014) found the overall prevalence of autism to be 0.7 %, and was higher in men (1.1%) than in women (0.2%).[3] In Nottinghamshire POPPI and PANSI estimates give figures of 5715 males and 667 females with autism (a combined total of 6382. Locally one of the key issues for adults with autism is that they risk falling into the gap between services for people with learning disability and services for people with mental health conditions if they have no diagnosed or recognised comorbidities so could struggle to receive the help they need.

Unmet need and gaps

As part of the Autism Self-Assessment Framework (SAF)[4] for Local Authorities, a number of actions have been identified which will significantly impact in a positive manner on the lives of people living with autism.

Table 1: Actions for Local Authorities identified from the Autism SAF

* Comments taken from the Autism Self-Assessment Framework are in italics

Pathway step	Unmet need/service gap
Training for staff providing services to people with autism	NCC training is monitored. Is NHS training monitored? Training for hospital staff is not mandatory. There is no co-ordinated system of evaluation around the effectiveness of training on practice.
Identification and diagnosis of autism in children and adults leading to assessment of needs	See NICE ASD Local care pathway Improved referral route – how do GPs record statistics? Introduce central system for recording diagnosis to better service the requirements of planning and commissioning services Different routes to diagnosis – introduce integrated pathway with separate routes for Learning Disability/non Learning Disability
Planning for transition services	More support needed for individuals, parents & carers when moving from Children’s to Adult Services
Local provision of services for children and adults	No psychology service in the County and there is limited availability of Speech and Language Therapy (SALT) and Occupational Therapy (OT) services Crisis services to meet needs of people with autism District Councils are currently assessing how they might meet autism needs in housing strategies with trained staff
Reasonable adjustments and equality	Meet needs of older people/women/BME e.g. bespoke training particularly around cultural and religious needs, accommodation needs for 65+, and potential increase in women presenting with autism.
Supporting people with complex needs who may display challenging behaviour	The transforming Care Partnership Programme is currently addressing the needs of such people
Employment for adults with autism	Build employer capacity and support people with Autism Spectrum Disorders, and their families Voluntary opportunities?
Working with the Criminal Justice System	Training for Custody Suite Officers and Probation Service – e-learning to be shared?

Recommendations for consideration by commissioners

	Recommendation	Responsibility
Strategic
1	Create a multi-agency task and finish group for autism as per the Statutory Guidance with assistance from the Health and Wellbeing Board as representatives of key partner organisations (i.e. assistance with identifying and gaining commitment from various stakeholders). The group will ensure the facilitation of a co-ordinated response and enable learning from good practice already available in some areas. As such it will be responsible for writing a local Autism Strategy and developing and implementing an Autism Action Plan based on the findings of this JSNA and the Self Assessment Framework (SAF). The Action Plan will fulfil a SAF target for 2019. The Health and Wellbeing Board will approve the Strategy and Action Plan in line with the Nottinghamshire Health and Wellbeing Board Joint Health and Wellbeing Strategy 2018-2022 priorities for Health and Sustainable Places. Responsibility for delivery against the Action Plan and Strategy will lie with the Mental Health, Autistic Spectrum Disorders and Learning Disabilities Integrated Steering Group.	The Mental Health, Autistic Spectrum Disorders and Learning Disabilities Integrated Steering Group with approval from the Health and Wellbeing Board
Health and Wellbeing promotion
2	Identify specific needs around protected characteristics particularly older people, people from minority ethnic and cultural groups and women, from diagnosis to services available to ensure equality of access. Further research will ensure that services are appropriate for these groups and facilitate their engagement	All public sector agencies alongside voluntary and community sectors
3	At transition stage, build employer capacity and support and resources for people with ASD and their families. Increase the ability of young people to gain the skills they might need to gain employment and reduce the costs of unemployment	Adult Social Care Department, Local Authority
4	Work with local businesses and organisations to maximise employment opportunities for people with autism (not just those at transition) to maximise economic and individual wellbeing across all ages.	Adult Social Care Department, Local Authority working in partnership with D2N2
5	Build community capacity and community responsibility to support people with Autism. Look at modifications to existing services to make them more accessible	Local Authority
Service Delivery
6	Provision of appropriate training for staff and volunteers working both specifically and more generally with local people within Nottinghamshire. This will enable more systematic availability of services and knowledge of personnel within these services	Nottinghamshire County Council, NHS Commissioner and Provider agencies, voluntary and independent sectors
7	Monitor and evaluate training within all agencies including Experts by Experience training – to enable all agencies to understand how best they might meet the needs of autistic people, as well as knowledge around their own staff groups	Nottinghamshire County Council, NHS Commissioner and Providers agencies, voluntary and independent sectors
8	Investigate how diagnostics and the autism pathway could be improved (including post-diagnostic support). A formal pathway is currently not available and would greatly enhance the lives of those with autism particularly where early intervention services can be put in place	Clinical Commissioning Groups
9	Local audit of poor take-up of primary care services and overuse of acute services by those affected by autism.	NHS bodies and NHS Foundation Trusts
10	Address the medical and lifestyle issues which result in poorer health outcomes and increased mortality	NHS and Local Authority Commissioners
Data
11	Set up and improve data collection across agencies around autism e.g. GPs. This will enable all agencies to gain a true picture of how services are operating and where gaps might exist	NHS Commissioner and Provider agencies and Nottinghamshire County Council

[1] National Institute for Health and Care Excellence (2012) “Autism spectrum disorder in adults: diagnosis and management”, page 5

[2] Department of Health, Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy, March 2015, page 34

[3] Brugha et al (2012) Estimating the Prevalence of Autism Spectrum Conditions in Adults : Data quality and methodology document , NHS Information Centre

[4] www.gov.uk/government/publications/autism-self-assessment-framework-exercise

[5] Department of Health, Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy, March 2015, page 30

[6] Nottinghamshire Health and Wellbeing Board Joint Health and Wellbeing Strategy 2018-2022, page 4