Group shot of campaigners outside the Houses of Parliament with quote graphic

What is the Autism Act and why does it exist?

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.

What has been the impact of the Autism Act?

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 10 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.

You can also find out more about what the National Autistic Society has done to support autistic people during the last decade here.

How did we find this out?

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.

What needs to change?

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:

  • 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.
  • 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.
  • 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.
  • 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.

You can find out how to support our campaign here.