Autism: Overview of policy and services

What is autism?

The National Autistic Society describes autism as a developmental disability that affects how people communicate and interact with the world. Autism is a spectrum condition that affects people in different ways. Autistic people may have:

• Challenges with social communication and interaction
• Repetitive and restrictive behaviours
• Over- or under-sensitivity to noise, touch, smells or tastes
• Highly focused interests or hobbies

Some autistic people also have a learning disability.

Terminology

This briefing uses terminology recommended by the National Autistic Society. It uses the term “autistic people” unless quoting text from another publication.

Autism is sometimes referred to as “autism spectrum disorder”, “autistic spectrum disorder” or “autism spectrum condition”. These terms are often used in relation to medical diagnoses and data reporting. Where these terms are used in the briefing, it is to reflect the data or text source they are referring to.

The term “neurodiversity” refers to the normal range of variation in the way people’s brains work, including how they perceive and respond to the world. A person whose brain works differently from the “typical” person may refer to themselves as neurodivergent; some, but not all, autistic people identify as neurodivergent.

The Autism Act 2009 and autism strategies

The Autism Act 2009 requires the Government to introduce and keep under review an adult autism strategy. Fulfilling and rewarding lives: the strategy for adults with autism in England was published in 2010 and was accompanied by statutory guidance for NHS organisations and local authorities (updated in 2015).

The strategy was refreshed in 2014, and in 2021 the Government published a new strategy for 2021-2026 including children and young people, alongside adults, for the first time. It focuses on autism awareness, education, employment, health, reducing inpatient care, community support and the criminal justice system.

An implementation plan for 2021-22 set out how the strategy would be funded in the first year. In February 2023 the Government said there is no confirmed publication date for an updated implementation plan. The Department of Health and Social Care (DHSC) is working on updating the statutory guidance.

Health policy and autism

The NHS Long Term Plan (2019) includes objectives for improving access to autism diagnosis and post-diagnostic support, as well as improving autistic people’s mental and physical health.

The National Institute for Health and Care Excellence (NICE) has said people referred for an autism assessment should be seen within three months. In
July 2022, there were 130,000 people waiting for a clinical autism assessment. Most of these people (84%) had been waiting for 13 weeks or more.

The Health and Care Act 2022 introduced a new legal requirement for all health and social care service providers registered with the Care Quality Commission to provide employees with training on autism and learning disabilities (called Oliver McGowan Training).

The Long Term Plan set a target to reduce inpatient provision for autistic people and people with a learning disability by 50% (compared to 2015 levels) and support more people in the community by 2023/24. In January 2023, 2,020 autistic people and people with a learning disability were inpatients, down 30% from 2,905 inpatients in March 2015. However, a higher proportion of inpatients were on the autism spectrum, compared to overall numbers, in 2023 compared to 2015.

In July 2022, the DHSC published an updated Building the right support for people with a learning disability and autistic people: action plan, focusing on six areas to develop community services and reduce reliance on inpatient mental health beds.

The Government also proposed in the Draft Mental Health Bill 2022 to amend the criteria for detention under the Mental Health Act, so a person could not be subject to long-term detention for treatment for autism or learning disability.

Social care and autism

Under the Care Act 2014, local authorities have duties relating to the provision of adult social care services, which apply to everyone including autistic adults. Guidance for social workers (PDF) is provided in a Government-commissioned Capabilities Statement. The Government is also rolling out a qualification for commissioners who work with autistic people. Guidance on identifying local demand and developing services for autistic people was published alongside the 2021-26 autism strategy.

In December 2021, the Government set out its plans for wider reform of adult social care in a white paper: People at the Heart of Care: adult social care reform white paper. In the Autumn Statement 2022, the Chancellor said the reforms would be delayed by two years.

Education and autism

Under the Children and Families Act 2014, local authorities have a duty to identify needs in their area and commission services to support children and young people with special educational needs and disabilities (SEND). In January 2015, the Government published a SEND code of practice.

In March 2022, the Government published the results a review of the SEND system’s effectiveness as a green paper for consultation. In March 2023, the Government published a SEND and alternative provision improvement plan: right support, right place, right time. The plan included intentions to establish national standards for SEND and alternative education provision and to standardise and digitise Education, Health and Care Plans.

Teachers are required to have a clear understanding of the needs of pupils with SEND, including autism, as part of the Teachers’ standards. The 2021-26 autism strategy commits £600,000 for staff autism training and professional development in schools and colleges in 2021/22.

Employment and autism

According to the Office for National Statistics, 29.9% of disabled people on the autism spectrum were in employment in 2021/22, compared to 54.3% of all disabled people and 81.1% of non-disabled people.

The National Autistic Society has said that 77% of unemployed autistic people want to work.

The 2021-26 autism strategy says that by 2026, the Government will have improved support to help autistic people find and stay in work. This will be through improving employer awareness of autism, improving the accessibility of employment programmes and making Jobcentres more autism-inclusive.

In April 2023, the Department of Work and Pensions announced a review considering how to improve autistic people’s employment prospects.

Schemes aimed at supporting autistic people with employment include the Disability Confident scheme, the Access to Work programme, the Intensive Personalised Employment Support programme and the Local Supported Employment initiative.

Under the Equality Act 2010, employers must make reasonable adjustments to support disabled job applicants and employees.

Social security and autism

Autistic people may be entitled to a range of benefits including benefits to help with the extra costs of a disability. These might include Personal Independence Payment (PIP), which is replacing Disability Living Allowance (DLA) and ‘Income replacement’ benefits to cover day-to-day living costs, such as Universal Credit (UC).

The Department for Work and Pensions published Transforming support: the health and disability White Paper alongside the Spring Budget on 15 March 2023. This included an aim to make “the [benefit] claim journey more of a two-way conversation”, communicate decisions in a simple and compassionate way and get more decisions right first time.

The white paper outlined plans to abolish the Work Capability Assessment. This assessment helps determine whether someone is entitled to extra amounts in UC and Employment and Support Allowance, as well as any work-related requirements people must meet as a condition of their claim.

Under these plans a new “UC health element” will be available to claimants who also receive PIP, replacing the existing extra amount for those assessed as having “limited capability for work and work-related activity.”

The criminal justice system and autism

The 2021-26 autism strategy says autistic people may be over-represented among people who come into contact with the criminal and youth justice systems, as victims, witnesses or defendants. It references evidence that autistic people often have poor experiences of these systems, can find prison environments overwhelming and that staff do not always understand their needs.

The strategy commits to developing a better view of existing provision for neurodivergent adults, including autistic adults, through a call for evidence on neurodiversity in the criminal justice system.

Neurodiversity in the criminal justice system: A review of evidence was published in July 2021. The review found too little is being done to understand and meet the needs of neurodiverse people in the system.

The Ministry of Justice responded by publishing a neurodiversity action plan (PDF) in June 2022, which was updated in January 2023 (PDF). The updated plan says neurodiversity support managers have been introduced in prisons and the Government plans to have one in every prison across England and Wales by 2024. It also notes autism accreditation is being promoted across the prison estate.

Devolved executives

This paper focuses on policies in England. Health is a devolved matter so each of the devolved executives is responsible for developing its own policy. Section 9 provides an overview of autism strategies implemented in Scotland, Wales and Northern Ireland.