A series of powerful and distressing media reports in recent months have laid bare the scandal of autistic people being forced to live long periods of their lives in mental health hospitals – often miles away from their family and friends and, in some cases, subject to seclusion, restraint and over-medication.
The Government and NHS England promised in 2015 to address this scandal by reducing the number of people on the autism spectrum or with a learning disability in mental health hospitals by between 35% and 50% through moving people into specialist support in their own communities. NHS England has recently made a new commitment to reduce the number by at least 50% by March 2024.
But, as our recent Beyond Transforming Care report found, the number of autistic people in mental health hospitals – especially those without an accompanying learning disability – has in fact gone up in this time. This is the opposite of what should be happening.
Wherever possible, autistic people should get the mental health support they need in their own community. If someone falls into crisis and is admitted to hospital, it’s essential that they are cared for by staff that understand autism – and in an environment that meets their needs – and for as short a time as possible. Hospitals wards can be completely inappropriate – noisy, bright and unpredictable – leaving autistic people completely overwhelmed and triggering extreme levels of anxiety.
Why this is happening
We believe there are three interlinked reasons why this is happening:
1) Training – professionals working in community and inpatient mental health services do not always get the autism training they need to fully understand autism and adapt their care for autistic people.
2) Money and outdated funding arrangements – at the moment, if you are treated in a mental health hospital your care is paid for by the NHS. If you move to somewhere in the community, councils generally need to take on the cost of your care. But many councils don’t have the services or funds. This means there is a problem with how places are funded at the moment: to get someone from the wrong care to the right care means that the funding needs to be moved with them.
3) The law – autism is a lifelong disability, not a mental health problem. Yet autism is defined as a ‘mental disorder’ under the Mental Health Act. This means that autistic people are at greater risk of being “sectioned” and going to a mental health hospital, even where this is entirely inappropriate because their crisis relates to not getting the right autism support. We believe the Government need to look again at this definition.
While the first two points have rightly attracted a fair amount of attention in the media, the third point has largely been absent from the debate.
The recent Independent Review of the Mental Health Act – which contained many welcome suggestions – highlighted that the definition of autism under the Act is a finely balanced issue. But the review said it was not within its remit to recommend a change to the definition. We and many autistic people and families were bitterly disappointed by this. It is absolutely wrong that this definition continues to include autism.
Autism is a lifelong disability and autistic people can have problems with their mental health like everyone else. In fact, some research suggests almost 80% of autistic adults have had a mental health problem in their life.
What needs to change
The Review did say that the Government should keep the definition under review. This is something that the previous Government had already pledged to do. Yet three years later, no one has comprehensively reviewed the definition in the Act. During that time, autistic people and people with a learning disability have continued to be detained in mental health hospitals.
We believe that the Government must urgently set up an independent review of this definition, involving autistic people, people with a learning disability, and their families, alongside organisations and professionals.