27 Jan 2020 12:19 PM
Autism affects the way that someone engages with and experiences the world around them. This note provides an overview of policy issues that are relevant to autistic people and their families.
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Autistic people process their environment differently to non-autistic people, resulting in relative strengths or difficulties, which can vary across contexts and throughout the lifespan. Autism affects everyone differently and is commonly referred to as a spectrum or constellation. It is thought that at least 1% of the world’s population, or 700,000 people in the UK, are autistic. It is recommended that a diagnostic referral be made within three months of reporting concerns to a healthcare professional, but only 18% of local authorities in England reported meeting this target in 2018.
Many autistic people have co-occurring conditions. The most common are mental health problems, other conditions which affect the developing brain (e.g. learning disability, and attention-deficit hyperactivity disorder), and health conditions such as sleep problems. Autistic people have a lower life expectancy than non-autistic people and are believed to be at a higher risk of suicide. Interventions for autistic people should aim to improve quality of life and provide an individual with the skills they need to reach their full potential. Interventions for co-occurring conditions, such as anxiety, often work best when they are personalised and adapted for an autistic person.
Each of the devolved nations in the UK has an Autism Strategy or other autism-relevant policies, which provide statutory guidance for service provision. In England, reports show that there has been little improvement since 2016 on service provision for autistic adults – the two greatest falls in service ratings have been reported in Employment and Service Planning. Autistic people continue to experience poor health outcomes, and are over-represented in figures on unemployment, school exclusions, institutionalised care and the criminal justice system. Research has suggested that improvement of quality of life, and reduction of service costs, could be produced by providing effective and timely support for autistic people and their families.
- Autism affects at least 1% of the population, although prevalence is likely to be under-estimated. Autism is thought to be under-recognised in adults, women and girls, non-binary people, and those from the ethnic minorities.
- Autism frequently co-occurs with other conditions, including mental health conditions, and other neurodevelopmental conditions which affect the developing brain, such as attention-deficit hyperactivity disorder and learning disability. It is estimated that up to 70% of autistic people have at least one mental health condition.
- A range of interventions are available for autistic people. These include treatment of co-occurring conditions (e.g. epilepsy) and providing support for parents and families. There are many autism interventions available to individuals and their families, such as pharmaceutical or behavioural approaches, which do not have a robust scientific evidence base, and can cause significant harm.
- The Autism Act (2009) and relevant autism strategies have increased autism awareness among professionals and the general public. However, autistic people continue to be disadvantaged in areas such as school exclusions, unemployment figures, and in the criminal justice system.
POSTnotes are based on literature reviews, interviews, and consultations with a range of stakeholders, and are externally peer reviewed. POST would like to thank interviewees and peer reviewers* for kindly giving up their time during the preparation:
- All-Party Parliamentary Group on Autism*
- Ambitious About Autism*
- Autism Community Research Network @ Southampton (ACoRNS)
- Autism Task and Finish Group, British Psychological Society*
- Department for Education*
- Department of Health and Social Care*
- National Autistic Society*
- Play in Education, Development and Learning (PEDAL), University of Cambridge
- Dr. Carrie Allison, Autism Research Centre (ARC), University of Cambridge*
- Professor Simon Baron-Cohen, Autism Research Centre (ARC), University of Cambridge*
- Dr. Sam Brice, Newcastle University
- Professor Bryony Beresford, University of York
- Professor Mark Brosnan, Centre for Applied Autism Research (CAAR), University of Bath*
- Dr. Carol Buckley, Royal College of General Practitioners*
- Dr. Sarah Cassidy, University of Nottingham
- Professor Tony Charman, King’s College London*
- Dr. Laura Crane, Centre for Research in Autism and Education (CRAE), University College London*
- Lee Corless, JP Morgan and Chase
- Dr. Max Davie, Royal College of Paediatrics and Child Health
- Dr. Sue Fletcher-Watson, University of Edinburgh*
- Emeritus Professor Dame Uta Frith, University College London
- Deborah Garland, National Autistic Society
- Amanda Gibbs, Autism expert and trainer*
- Rt. Hon. Dame Cheryl Gillan MP, All Party Parliamentary Group on Autism*
- Professor Gyles Glover, Public Health England*
- Professor Jonathan Green, University of Manchester
- Anne-Marie Gregory, Autism activist
- Professor Francesca Happé, King’s College London*
- Dr. Phil Heslop, Northumbria University
- Dr. Laura Hull, University College London
- Dr. Barry Ingham, Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust
- Carly Jones MBE, British Autism Advocate, Honours and MoJ Public Appointee*
- Professor Emily Jones, Birkbeck University of London
- Professor Martin Knapp, London School of Economics*
- Kate Linden, Newcastle University
- Dr. Katie Maras, Centre for Applied Autism Research (CAAR), University of Bath
- Mahlia Matina, Neurodivergent Visual Artist
- Emerita Professor Helen McConachie, Newcastle University
- Panda Mery, Productive Irritant
- Dr. Damian Milton, Tizard Centre at University of Kent*
- Dr. Nell Munro, University of Nottingham
- Dr. Dinah Murray, Productive Irritant*
- Lorraine O’Shea, UK Parliament*
- Professor Jeremy Parr, Newcastle University
- Stephen Patterson, Autism in Mind
- Professor Jacqui Rodgers, Newcastle University*
- Carole Rutherford, Autism in Mind
- Dr. Felicity Sedgewick, University of Bristol
- Professor Emily Simonoff, King’s College London
- Dr. Eleanor Smith, Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust
- Letesia Smith, Autism in Mind
- Colin Wilson, Newcastle University
*Denotes those who acted as external reviewers of the briefing.