This year marks the 10th anniversary of the landmark Autism Act becoming law in England. The Act says that there has to be a national adult autism strategy, underpinned by binding statutory guidance to address the gaps in support that autistic people face. The government has to review the strategy every five years or so. They are reviewing it this year and have committed to extending it to children for the first time.
This is a really important opportunity to secure much-needed change for autistic people. That’s why our charity has supported an inquiry by the All Party Parliamentary Group on Autism (APPGA), chaired by Rt Hon Dame Cheryl Gillan MP, into the impact of the Act and the state of support and services now, 10 years on.
The inquiry, which involved a survey of over 11,000 autistic people and their families in England and evidence sessions in Parliament, found that there simply isn’t enough care, support and understanding for autistic people in our society.
Worryingly, over two in three autistic adults surveyed said they don’t get the support they need. This could mean that as many 327,000 autistic adults in England are living without help to do things other people take for granted, like socialising, managing money or getting out and about.
Autism is a lifelong disability. It is also a spectrum, meaning that every autistic person has their own strengths and face different challenges. Some autistic people lack mental capacity or might need 24-hour care; other autistic people may need just a few hours of help at home each week, or a social group to stop them becoming isolated.
But the inquiry found a substantial gap between what autistic people need, and what they get across social care, health and mental health services:
- 38% of autistic adults told us they need support from social groups but only 16% have this support.
- 29% of autistic adults told us they need buddying or befriending, but just 4% said they get this.
- Just 4% of autistic adults and families told us they get the support they needed in the year after their diagnosis.
- Just 14% of autistic adults told us there were enough mental health services in their area.
- Only 10% of autistic adults thought social workers have a good understanding of autism. Only 22% of autistic adults thought this for GPs and 11% think this for hospital doctors.
This lack of support, services and understanding is having devastating consequences on autistic peoples’ lives. It’s leading to widespread isolation, mental health problems and people falling into crisis.
What needs to change
Following the inquiry report, we at the National Autistic Society launched our Not Enough campaign, demanding better support and services for autistic people. We’re calling on the Government to introduce specialist autism teams in every area in England.
These teams are community-based, multi-disciplinary services that provide or coordinate diagnosis, care and support and also provide training and advice to mainstream services. Autistic people, their families and professionals overwhelmingly told us they want to see these teams in their area. They said this type of support could help autistic people maintain good mental health, and help them manage their daily lives, particularly in the difficult period immediately after receiving a diagnosis.
The Government is set to publish its updated autism strategy by the end of the year.