'Not Enough' campaign text with NAS logo, next to cover of report

Today, we are launching Not Enough, our campaign to demand better support and services for autistic people in England.

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. We are calling on the Government to introduce specialist autism support in every council in England and to give councils the money they urgently need to fix the crisis in social care.

How you can get involved

You can support our Not Enough campaign by contacting your MP, to invite them to our event in Parliament, which will take place before the end of the year. At the event, autistic people, families and professionals will talk to MPs about what they must do to better support autistic people.

Invite my MP

Our campaign is based on the findings of an inquiry, published today, by the All Party Parliamentary Group on Autism (APPGA) and the National Autistic Society into the impact of the Autism Act, 10 years after its introduction. A survey of around 11,000 autistic adults and their families in England and evidence sessions in Parliament found that there is simply not enough care, support and understanding in our society for autistic people.

This is having devastating consequences for autistic people: widespread isolation, mental health problems and people falling into crisis.

The inquiry's findings

The inquiry’s survey of around 11,000 autistic adults people and families in England, found:

  • 71% (2 in 3) of autistic adults in England aren't getting the support they need.
  • 26% (1 in 4) of autistic adults need support to live more independently; just 5% (1 in 20) get this.
  • 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.
  • 38% (nearly 2 in 5) of autistic adults need support from social groups; only 16% have this support.
  • 29% (nearly 3 in 10) of autistic adults need buddying or befriending; just 4% (1 in 25) get this.

Thank you to everyone who contributed to this report.

Read the report

Under the landmark Autism Act, alongside other important laws like the Care Act, autistic people in England are entitled to the care and support they need. But the inquiry found that not enough has been done locally and nationally to make sure that the Autism Act makes a difference to all autistic people in the country. Progress has been held up because there isn’t enough understanding of the Act’s duties on councils and the NHS and of how to implement them.

At the National Autistic Society, we are also concerned that the lack of adequate support has been made worse because councils and health services don’t have enough funding to create and maintain vital diagnosis and support services.

Our inquiry heard that, without the right autism-specific services, people aren’t getting enough support, which means their needs become more complex, including mental health problems and hitting crisis point.

What the report calls for

The report calls on the Government to do lots of things, including:

  1. Introduce specialist autism support in every council in England
  2. Immediately invest in social care services and secure long term sustainable funding
  3. 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.

Reaction

Jane Harris, Director of External Affairs at the National Autistic Society said: "Years of underfunding to social care and poor understanding of legal duties has limited the impact of the landmark Autism Act.

"Our joint inquiry with the All Party Parliamentary Group on Autism found that two in three autistic adults don't get the support they need. We heard awful stories of people struggling to get support and then becoming isolated and developing mental health problems, like anxiety and depression.

"Families are trying to plug the gap, but are being left with too much to do and autistic people are ending up needing urgent intensive help. In some of the worse cases, people even end up being sectioned - simply because there's nowhere else to go.

“Autistic people are being left behind. This is simply not good enough. We need specialist autism support in every council in England and immediate investment into the social care system."

The Rt Hon Dame Cheryl Gillan MP, Chair of the All Party Parliamentary Group on Autism said: "While the Autism Act (which I introduced 10 years ago) has made a difference, there is clearly still more work to do to ensure autistic people can access the support they need to live the lives they want."

RW, 39, is autistic and comes from Northamptonshire. He receives help from an outreach service, for 17 hours per week. RW said: “They help me understand people better when I get confused. They help me broaden my horizons by going out more. They help me with everyday things I find difficult because of my disability.”

Trisha Hackett lives in Coventry and has been the guardian of Ashley and James, two 28-year-old autistic men, since their parents died.

Headshot photo of Trisha HackettShe said: “I have been looking after Ashley and James since 2007. But their care and support has been reduced over the years. They now live without the appropriate day-to-day help they need. It is a constant struggle seeing them become more and more isolated and seeing their mental health deteriorating.

“Ashley needs help and encouragement with everyday things like washing himself, cooking, shopping, and daily living – especially socialising. But he now only gets 5 ½ hours of support.

“James lives in supported living and needs a lot of help with personal hygiene and eating healthily - he has recently been diagnosed with type 2 diabetes due to poor diet and lack of exercise, which is due to his social isolation. The reduction in his hours over the years means he gets less than half the support he was getting. The local authority do not always understand his individual care needs when completing their reviews, which has led to cuts over the years.

“This concerns me, particularly in respect of their future care needs, health and well-being – and especially if these cuts keep happening. They only have me and, if anything happens to me, I am not sure how they will cope or be cared for and who will act on their behalf.”

Minister for Care Caroline Dinenage, said: “I want to ensure autistic people get the support they need to live a full and happy life. This report highlights the need to urgently review our offer to autistic people and their families which is why we will publish a refreshed autism strategy later this year.

I welcome the insight provided by APPGA’s review of the services and support available to autistic people and will consider their recommendations in developing the strategy.

Further information

What's happening next

  • The APPGA and the National Autistic Society will use the findings in the inquiry report in their response to the government’s current review of the national autism strategy for England.
  • The Government's updated autism strategy is set to be published by the end of the year.

Northern Ireland, Scotland and Wales

The Autism Act only applies in England – Scotland, Wales and Northern Ireland have their own respective laws or strategies that set out how their Governments should improve the lives of autistic people.

  • In Wales, we campaigned hard for autism legislation but unfortunately the Autism Bill was defeated in the National Assembly for Wales in January 2019. However the Welsh Government is now working on a Code of Practice on the Development of Autism Services, which should be available for consultation in the next few months.
  • In Scotland, we are currently carrying out a review of the Scottish Strategy for Autism in partnership with the Cross Party Group on Autism at the Scottish Parliament. This will report in the next few months.
  • While Northern Ireland has an Autism Act, the Northern Ireland Assembly is not currently sitting.

We will be using the data we collected from the rest of the UK in our ‘Autism Act – 10 Years On’ survey to inform our campaigning and influencing work across the UK.