What is the Autism Act?
Since 2009, the Autism Act states there has to be a Government strategy for improving services for autistic adults, underpinned by legally binding guidance to councils.
More than ten years ago, our charity’s I Exist campaign identified the lack of support for autistic adults in England. There were too few diagnosis services for adults and many existing services were for people with a learning disability or a mental health problem, meaning that autistic people fell between the gaps.
We worked with Dame Cheryl Gillan MP and other autism charities to campaign for an Autism Act to make new legal duties to provide adult autism services in England. With the support of thousands of autistic people and their families, we were successful and the Autism Act became law in November 2009.
The Act says that there has to be a Government strategy for improving services for autistic adults, underpinned by legally binding guidance to councils. It also has a built-in review – every five years or so – when the strategy and the statutory guidance are updated. This gives us the chance to campaign to make changes – and this year is when the latest review is taking place.
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The Autism Act has brought about some great changes to the way that autistic people access support. Because of the Act, almost every council has a diagnosis pathway for adults and a specific Autism Lead. Additionally, it makes sure that every autistic person has the right to a social care assessment, something which was difficult for many autistic people more than10 years ago.
However, our joint report, written with the All-Party Parliamentary Group on Autism (APPGA), 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 other people take for granted, like socialising, managing money or getting out and about. This suggests that the services that autistic people need have not been developed, partly due to not having enough funding.
Our campaigning has also secured a commitment from the Government that this latest autism strategy will be extended to cover children too.
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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 response 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 that topic in the report.
You can read the report in full here.
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We believe there is not enough progress in 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.
At this point in our campaign, there are some recommendations that need to immediate action, because of the huge impact they can 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 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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Autism is not a mental health condition. The Government must order an independent review into autism as a ‘mental disorder’ in the Mental Health Act. They should work with autistic people, families and professionals to do this properly.
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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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The inquiry’s survey of around 11,000 autistic adults people and families in England, found:
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71% (2 in 3) of autistic adults in England aren't getting the support they need.
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26% (1 in 4) of autistic adults need support to live more independently; just 5% (1 in 20) get this.
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While 20% (1 in 5) of all autistic adults need support with day-to-day tasks, like washing, cooking and going out the house; only 6% (just over 1 in 20) get this.
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38% (nearly 2 in 5) of autistic adults need support from social groups; only 16% have this support.
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29% (nearly 3 in 10) of autistic adults need buddying or befriending; just 4% (1 in 25) get this.
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The report calls on the Government to do lots of things, including:
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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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10 years after the Autism Act: 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 and 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.
Thee National Autistic Society has worked 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 the Prime Minister to stop the mistreatment of autistic people in inpatient mental health care. It 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, changes which came into force in August 2019. We launched online training about autism in 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 our 116th volunteer branch, which provides 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. |
The Autism Act: ten years on
Read the APPGA's report and hear stories from autistic people and their families.