Autism – overview of policy and services

The Autism Act 2009

The Autism Act 2009 is currently the only disability-specific legislation in England. The Act requires the Government to introduce and keep under review an adult autism strategy. The initial strategy was published in 2010 and refreshed in 2014. The accompanying statutory guidance is aimed at supporting the NHS and local authorities in implementing the strategy in areas such as staff training, identification and diagnosis, transition planning when people move from children to adult services, employment and criminal justice.  

The 2019 review and a new strategy

In 2019 the Government undertook a comprehensive review of the autism strategy and planned to extend it to include children and young people for the first time. A call for evidence was launched in March 2019 with a summary of the findings published in July 2021.

The findings from this and other reports were used to inform a new autism strategy, The national strategy for autistic children, young people and adults: 2021 to 2026.

NHS policies

There have been successive health policies aimed at improving outcomes for people with autism. The NHS Long Term Plan (2019) has several objectives for people with autism, including: the introduction of a ‘digital flag’ in the patient record by 2023/24 to ensure staff know a patient has autism; ensuring reasonable adjustments are made so wider NHS services can support people with learning disabilities or autism; and piloting the introduction of a specific health check for people with autism.

There are ongoing concerns around diagnosis, particularly for children, with increasing waiting times from referral to diagnostic assessment in some areas. NICE guidance recommends a maximum waiting time of three months from referral to assessment. The latest local authority self-assessment (2018) found the median reported waiting time to be over seven months. During a Commons debate in 2019, the Minister for Care acknowledged geographical disparities and said “this postcode lottery must end.” She said new data on autism waiting times would help hold local authorities to account.

The Government and NHS have also focused on reducing levels of inpatient care for people with a learning disability and/or autism. The Department of Health and Social Care (DHSC) has said long-term residence in hospitals is not appropriate, and committed to move people to community-based support. However, ambitions have been postponed. The most recent target, as detailed in the NHS Long Term Plan, is for a reduction in inpatient provision of 50% (compared to 2015 levels) by 2023/24.

The Government has committed to introducing “Oliver McGowan” (named after Oliver McGowan whose death highlighted the need for health and social care staff to have better training in learning disability and autism) mandatory training on learning disabilities and autism for health and social care staff. Trials were due to begin in health and social care settings by April 2020 with a report by March 2021. The trial was subsequently extended due to the Covid-19 pandemic with the report now due in February 2022, after which wider roll-out of training is expected for all staff.

The impact of Covid on autistic people

Several reports on research into the impact of coronavirus on autistic people and their families have been published. They show significant impacts on people on the autistic spectrum in many aspects of their lives including: education, mental and physical health, and care and support.

Devolved executives

This paper focuses on policies in England. Health is a devolved matter so each of the devolved executives are responsible for developing their own policies. The last section provides an overview of strategies implemented in Scotland, Wales and Northern Ireland.