Autism is a lifelong and often invisible disability that affects how people communicate and interact with the world. There are approximately 600,000 autistic adults and children in England – from all sorts of backgrounds. Many of them need support from social care to do things others take for granted – like getting dressed in the morning, going to work or getting out and about.
But a recent inquiry by MPs and peers found that two in three autistic adults don’t get the support they need. This could amount to as many as 327,000 people. And we’re worried that the experiences of autistic people from ethnic minority groups, who are older or identify as LGBT+, could be even worse. It’s clear there is a substantial and worrying gap between what autistic people need, and what they get.
The introduction of the Autism Act 10 years ago, and then the Care Act in 2014, should have partly addressed this huge problem. But, in today’s current social care system, many struggle without the support they need until they reach crisis point.
Why autistic people aren’t getting the support they need
While there are lots of reasons autistic people don’t get the social care they need, our recent research with the All Party Parliamentary Group on Autism found that autistic people are often overlooked because their needs aren’t immediately identifiable.
Autistic adults told us that social care professionals don’t always recognise their needs, because they don’t see or understand their autism. Care assessments are often particularly difficult for autistic people. This is often because the questions asked in assessments can be challenging for autistic people to interpret clearly. This is made worse by the fact that the assessments themselves can be quite stressful – and therefore result in autistic people becoming overwhelmed and, in some cases, shutting down.
Social care professionals should be making reasonable adjustments to make sure autistic people aren’t at a disadvantage. But we know that doesn’t happen enough. To make sure autistic people get the support they need, it’s really important that social care professionals understand autism, and the reasonable adjustments they should be making under the law. That’s why we really welcomed the last Government’s commitment to roll out mandatory autism training to all health and care staff.
The experiences of autistic people from minority groups
It’s really important councils get support right for people with hidden disabilities, including autistic people. And as part of this, councils – and social care professionals – need to understand and be able to properly support autistic people from minority groups. For example, autistic people from ethnic minority groups, who identify as LGBT+ or who are older may be particularly vulnerable to having their needs overlooked.
This could mean autistic people in, or wanting, a same sex relationship not having their relationships properly recognised by a care worker or an autistic person from an ethnic minority group facing stigma from some people in their own community. For older autistic people, there is a lack of autism-specific support. Some autistic people tell us that in today’s care system, there’s often a one size fits all approach and this lets people down.
This must change. This means making sure that we have a fully-funded social care system, which has a well-trained workforce who are able to understand and recognise the support needs of all autistic people – whatever their background and however they identify. The next government must make this a reality.