What is the Autism Act 2009?
The Autism Act 2009 states that there must be a Government strategy for autistic adults in the UK, underpinned by legally binding guidance to local authorities and NHS bodies
In 2009, the Autism Act 2009 was passed to make provision about meeting the needs of autistic adults. The Act requires the Government to introduce and keep under review an adult autism strategy. This national strategy is reviewed and published roughly every five years to keep the strategy and statutory guidance updated.
More than ten years ago, our charity’s I Exist campaign identified the lack of support for autistic adults in England. We worked with the late RT Hon Dame Cheryl Gillan DBE MP and other autism charities to campaign for an Autism Act. With the support of thousands of autistic people and their families, we were successful, and the Autism Act 2009 became law in November 2009.
Thanks to our campaigning, the refreshed strategy published in 2021 was also expanded to cover provision for autistic children and young people. However, we do not believe that the national strategy has gone far enough to address the challenges autistic people face.
Our joint report, written with the All-Party Parliamentary Group on Autism (APPGA), found that the services that autistic people need are not being provided and are being held back by a lack of funding. After ten years, we said this is Not Enough.
We continue to hold the Government accountable for the lack of movement and continued failures to make real progress on the plans and vision set out in the ongoing national autism strategy.
The Autism Act: ten years on
Read the APPGA's report and hear stories from autistic people and their families.
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Our survey of around 11,000 autistic adults and families in England and the parliamentary-run inquiry sessions, found:-
71% of autistic adults in England aren't getting the support they need
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26% of autistic adults need support to live more independently, but just 5% receive this
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While 20% of all autistic adults need support with day-to-day tasks, like washing, cooking and going out of the house, only 6% receive this
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38% of autistic adults need support from social groups, but only 16% have this support
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29% of autistic adults need buddying or befriending, but just 4% receive this.
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Our charity and the All-Party Parliamentary Group on Autism recommend that the Government:
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Introduce specialist autism support in every council in England
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Immediately invest in social care services and secure long term sustainable funding
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Honour its commitment to launch a fully-funded campaign to improve public understanding of autism.
You can read a full list of recommendations in the report. -
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The Autism Act 2009 has brought about some great changes to the way that autistic people access support. Thanks to the Act, almost every local authority has a diagnosis pathway for adults and a specific Autism Lead. Additionally, the Act ensures that every autistic person has the right to a social care assessment, something which was difficult for many autistic people more than ten years ago.However, our joint report shows that two in three autistic people still do not get the support they need. This could mean up to 327,000 autistic adults aren’t getting help to do things that many people take for granted, such as socialising, managing money or getting out and about.
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We believe there is not enough progress on implementing the autism strategy and still not enough support for autistic adults.Our report identifies several recommendations to shape the Government’s autism strategy and beyond. These changes are recommended to ensure that autistic people receive the support they need.
There are some recommendations that need to immediate action because of the huge impact they could have for autistic people, but other recommendations will continue to shape our future campaigning work.
Our current priorities for change are:
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We need specialist autism support in every council in England and to give councils the money they urgently need to fix the crisis in social care. Specialist autism teams would offer support across diagnosis, mental health and social care so autistic people can get the tailored support they may need.
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We know that people wait too long to receive an autism diagnosis, which can stop an autistic person accessing the support they need. We want the Government to make sure local areas are held to account for their diagnosis waiting times and create a new waiting time standard, working with families and autistic people to choose a time that gets people the support they need.
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We know that autistic people face judgement and misunderstanding. The Government must correct this by properly funding a long-term autism understanding campaign across the UK, so that we can improve millions of people’s attitudes towards autistic people.
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Working with the All-Party Parliamentary Group on Autism, we ran a survey to understand the experiences autistic people have when they access support. We had over 12,500 responses from autistic people and their families across the UK, with more than 11,000 responses from people in England, which have informed our report.On top of this, we ran focus groups and held six parliamentary inquiry sessions to understand the challenges autistic people face in all aspects of life. These covered public understanding of autism, physical health, mental health, social care, employment and the criminal justice system. These sessions were chaired by Members of Parliament (MPs) from different political parties, who then authored a chapter on each topic in the report.
You can read the report in full here.
Ten years after the Autism Act 2009: a timeline
Our campaign Not Enough demands better support and services for autistic people in England. More than ten years on from the Autism Act 2009 and the Government has not done enough to live up to its promises to autistic people and their families.
Two in three autistic adults don’t get the support they need and can end up becoming isolated, developing mental health problems and falling into crisis. We need specialist autism support in every council in England as well as the funding that councils urgently need to fix the crisis in social care.
The National Autistic Society is pushing hard to create a society that works for autistic people. To keep you updated on our charity’s work to transform lives and change attitudes, we have created a timeline below.
2020 |
Work to ensure the delayed autism strategy delivers what autistic people need. |
2019 |
Autism was included as a priority in NHS England’s Long Term Plan. This means that NHS England have to plan how to provide better healthcare for autistic people. We gave a petition to then Prime Minister Boris Johnson to stop the mistreatment of autistic people in inpatient mental health care. The petition received over 230,000 signatures – our biggest ever. We launch our Not Enough campaign to demand better support and services for autistic people. |
2018 |
We campaigned for changes to Blue Badges, meaning that autistic people are more likely to qualify for them. These changes came into force in August 2019. We launched online training about autistic women and girls to help improve understanding among professionals and the public. |
2017 |
We launched Autism Hour, encouraging businesses all over the country to take their first autism-friendly steps. To date, 40,000 Autism Hours have taken place across the UK. We launched our research into the experiences of autistic people in inpatient mental health hospitals, and their families. We opened another volunteer branch, which provide support in local communities all over the UK. 75% of the population currently live less than 20 miles away from a National Autistic Society branch. |
2016 |
We launched our Too Much Information campaign to improve public understanding of autism. Our first video was watched by more than 56 million people. Our Every Teacher campaign also helped persuade the Government to educate trainee teachers about autism and how to support autistic pupils as part of its training curriculum. We also launched the Autism Friendly Award, encouraging businesses to be truly autism-friendly in their work. Hundreds now hold the Award including Buckingham Palace, Lloyds Bank and British Airways. |
2015 |
We launched our Autism diagnosis crisis campaign, highlighting unacceptable diagnosis waiting times for both children and adults in England, achieving commitments from Government and the NHS to make improvements. We opened our first two Cullum Centres, specialist autism units in mainstream schools to provide support for autistic children. We also held our first ever World Autism Awareness Week, educating the public about autism. |
2014 |
We led the successful Careless campaign to make sure autistic adults could continue to be eligible for social care. We also held the first autism-friendly performance of the Lion King, sparking relaxed performances in many theatres and cinemas across the UK which continue today. |
2013 |
We launched our Push for Action campaign ahead of the first review of the adult autism strategy in England. We opened Thames Valley School, which now supports 54 autistic students. We also launched the Autism Professional Awards to celebrate achievements and share best practice all over the UK. |
2012 |
We celebrated the National Autistic Society’s 50th Birthday. |
2011 |
The Scottish Government published its own national autism strategy and Northern Ireland introduce an Autism Act. This comes following our campaigning across the UK. |
2010 |
We opened new housing support schemes in Glasgow, Warwickshire, Northamptonshire, Surrey, Kent and Somerset. We launched our campaign You Need to Know to challenge the Government to create better Child and Adolescent Mental Health Services for young autistic people. |
2009 |
We led a campaign to create the Autism Act in England. This guaranteed the rights of autistic adults in England. It is the England’s only law aimed at improving support for people with one particular disability. |