This year marks the 10th anniversary of the Autism Act, the first ever disability-specific law in England. This was a landmark in the battle to improve the lives of autistic adults and their families. It created an autism strategy and statutory guidance, which put a legal duty on government, councils and health services to provide specific support for autistic adults.
Why this is so important
Autism is a lifelong disability which affects how people communicate and interact with the world. Autism is a spectrum condition. This means autistic people have their own strengths and varying and complex needs, from 24-hour care to simply needing clearer communication and a little longer to do things at work and school. Life can become really difficult without the right support or understanding and lead to autistic people missing out on education, struggling to find work and becoming extremely isolated.
2019 is also important because the Government will review the autism strategy and, for the first time, extend it to children. This is an opportunity to look at what has changed over the past 10 years, to raise awareness of the Act and the duties government, councils and health services should be meeting, and to campaign for further changes – and better support for autistic people in England.
That is why, in partnership with the All Party Parliamentary Group on Autism, we will investigate the current state of care and support for autistic children and adults.
What the Act has achieved
As a result of the Act, there has been a fundamental shift in how policy is developed and delivered for autistic adults. Leadership and structures have been put in place at national and local levels to make sure that the needs of autistic adults are being considered. The statutory guidance includes many duties, from improving diagnosis to training and commissioning of services.
93% of councils in 2016 reported having an adult autism diagnosis pathway in their area and an autism lead. But back in 2007, our research found that only 48% of local health bodies had an autism diagnosis service and only 39% of councils had an autism lead.
The remaining gaps
However, we know that what is delivered on the ground is still not good enough and that many local areas are not meeting their obligations under the Act in full. Currently, only 16% of autistic people in the UK have a full-time job, 79% report feeling isolated and autistic children are four times more likely to be excluded from mainstream school. And, over a third of autistic adults have reported severe mental health problems.
There are a number of reasons for this, including the continued failure of the Government to get to grips with the social care funding crisis. This has made it incredibly difficult for commissioners and councils to fully implement the autism strategy.
What you can do to help
To really improve the lives of autistic people, we need concerted action at every level of state and society, particularly from government, councils and health and care providers. All providers and practitioners can do their bit by improving their knowledge and understanding of the Autism Act, the autism strategy, and statutory guidance – whether online, by speaking to your local autism partnership board or taking part in events like our upcoming Autism Professional Conference.
This month, we will be launching a survey to understand what autistic people, their families and carers think about the Act, its impact and what needs to change. You can help us by sharing this survey with your contacts. We will have a call for evidence in the Spring too, and we want to hear from you.
By working together, we know that we can transform lives, change attitudes and create a society that works for autistic people.
Find out more about autism, the National Autistic Society and the Autism Act at www.autism.org.uk