Key messages and policy recommendations
- All major pieces of social care, health and equality legislation apply to people with autism, but have not been used with sufficient consistency to support them in practice.
- Training of social care staff is key to their recognition and understanding of autism.
- Social care staff have a key role to play in identifying people who may have autism, though actual diagnosis is a task for trained professionals.
- A diagnosis does not automatically lead to service provision, but has important benefits, including greater understanding of the condition and what it means, an assessment of need and improved support.
- When a person receives a diagnosis, strong links between health and social care are indispensable.
- People need knowledgeable, prompt information about autism, and about where they can seek support.
- Making contact with social services for the first time can be difficult for autistic people.
- If you are conducting an assessment always be sure to give the person sufficient notice, be punctual, be flexible and accept that some people with autism can only manage short conversations, so more than one meeting may be needed.
- Consider sensory issues both during assessment and in relation to need; other learning difficulties or conditions; sleep issues; dietary issues; carer stress and potential for a carer’s assessment; and the needs of siblings and other family members.
- A carer’s assessment is the vital first step in a carer accessing the support they need, yet too few carers for people with autism have received one.
- Commissioners should ensure there are options for autistic people in terms of where to live and who supports them, specialist services are available for those who need them, and effective joint working exists between services.
- Commissioners should involve people with autism, their families and carers in service design and delivery, and explicitly include autism in key documents.
- Commissioners should provide specialist provision for people with complex needs, supported by well-trained and motivated staff.
- Frontline staff should endeavour to build good relationships with people with autism by being patient, sensitive, straightforward, consistent, calm, reliable and accepting of the person.
- Transitions should fully involve young people and their families and carers and respect their preferences.
- Developing capacity for low-level early intervention services could lessen the lengthy battles for support that many people with autism and their families have had to wage.
- People with autism are likely to benefit from managed forms of personalised budgets.
Requirements for effective service delivery Open
- Care Act 2014 guidance stresses the importance of those assessing the social care needs of a person with autism having sufficient training and experience to do so.
- Assessments must ensure any underlying support needs related to a person’s autism are considered strongly. This is part of the Care Act 2014’s priority to ensure that people’s wellbeing is reflected in the assessment.
- The Care Act 2014 requires local authorities in England to consider the strengths and capabilities of those being assessed.
- ‘Fulfilling and rewarding lives’ sets out seven quality outcome measures against which local areas in England can test how well they are meeting the aims of the Autism Strategy.
- In England, transition planning is addressed within a young person’s education, health and care (EHC) plan, covering social care, education, health and support into employment, which runs until a person is 25 (for those in education or training – excepting university study).
- In Northern Ireland, transition planning is guided by the Education (Northern Ireland) Order 1996 as amended by the Special Educational Needs and Disability (Northern Ireland) Order 2005.
- The Care Act 2014 breaks preventative services into primary, secondary and tertiary categories, going from the promotion of more general services which may be purchased by the carer or autistic person, to more focused interventions aimed specifically at particular groups.
- Policy in England calls for universal offers of advice and support in finding appropriate assistance, so personalisation should have something to offer even to those people with autism who do not have eligible needs after assessment.
- Care Act 2014 guidance gives carers equal status in relation to eligibility for assessment of support needs. In Northern Ireland, carers who provide a substantial amount of care on a regular basis for someone with autism have the right to a needs assessment when requested.