Enable revisits: Autism and mental health

In 2019, we shone a spotlight on the definition of autism under the Mental Health Act. Defined as a mental disorder under the act, many autistic people have faced detention and inappropriate care. We return to the issue, to uncover what has progressed in the last 12 months.

Autism is not a mental health condition; however, it is defined as a “mental disorder” under the Mental Health Act 1983. Campaigners say that this is one of the reasons that hundreds of autistic people in the UK are living in inpatient care that doesn’t cater to their needs.

This definition of autism and learning disabilities as mental disorders in the Act means that adults living with specific conditions can be legally detained and held in secure facilities for assessment and treatment, even if they don’t have a mental illness.

As a result, people living in mental health hospitals are often in the care of people who don’t understand or have a background in autism or learning disabilities, which can result in inadequate care, or abuse.

The average length of stay in a mental hospital for someone in this situation is five and a half years: a timeframe that campaigners and charities argue is far too long, and unnecessary if the right community-based support was simply made available instead.

CAMPAIGN

The National Autistic Society is one of these charities, raising awareness about the steps necessary to ensure autistic people are not inappropriately sectioned and taken into inpatient care against their and their families’ will.

“We know that once autistic people are in mental health hospitals, it’s very unlikely to be a positive experience,” says Tim Nicholls, head of policy at the charity. “The research shows people become overmedicated, their physical and mental health can deteriorate further.

“Although the overall number of people with a learning disability or autistic people in mental health hospitals has gone down since 2015, it hasn’t gone down by the amount it needs to; and the numbers just relating to autistic people have gone up.

“That’s particularly concerning for us at National Autistic Society because we think it highlights a lack of the community-based support that actually works for autistic people.”

According to the charity, there are three things that would help alleviate the crisis of autistic people living in mental health hospitals: improved community mental health support, staffed by experienced professionals who understand autism; increased funding into adult social care to meet the people’s needs in the community; and for the government to examine the law, and review the definition of autism and learning disabilities as mental disorders under the Mental Health Act.

“Fundamentally, it’s a rights issue,” continues Tim. “You wouldn’t see other situations where the failure to put in place the right support to help someone live independently, is then used as grounds to detain them and deprive them of their liberty.”

LAW

In February this year, the Equality and Human Rights Commission (EHRC) took the first legal steps against Health Secretary, Matt Hancock, for repeated failures to provide appropriate accommodation for people with learning disabilities and autistic people.

The pre-action letter condemned the inappropriate inpatient care of more than 2,000 people, and argued that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights.

The letter follows the discovery of abuse at Whorlton Hall last year, a privately-run, but NHS-funded hospital for autistic adults and adults with learning disabilities. The abuse was uncovered by a BBC Panorama documentary, which also broke the news of similar abuse taking place at Winterbourne View eight years earlier.

TRANSFORM

“We’ve heard so many heart-breaking stories about people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years,” explains Joanna Owen, solicitor at EHRC.

“There seems to be an endemic problem with the current inpatient care system for people with learning disabilities and autism and urgent action is needed. We’re not convinced that the DHSC will meet its latest deadlines to move patients from inappropriate inpatient care to community-based settings.

“This suggests a systemic failure to protect the right to a private and family life, and right to live free from inhuman or degrading treatment or punishment.”

Some of the main concerns of the EHRC include the fact that since 2015, targets have involved percentage reductions, as opposed to bringing an end to all inappropriate detentions.

“[The DHSC] have not been fast enough in making changes and have consistently missed their own deadlines,” adds Joanna. “Actions speak louder than words and the DHSC must follow through on its commitments so that people with learning disabilities and autism are moved from inappropriate inpatient care to community-based settings.”

POSITIVE STEPS

If you’re concerned that a loved one may be at risk of being detained under the Mental Health Act, there are steps you can take to prevent this. The National Autistic Society recommends you request a care and treatment review (CTR), which are used by NHS England to reduce the number of people going into mental health hospitals, while also improving the level of care provided to an individual.

“People with learning disabilities and autism have exactly the same rights as everyone else,” Joanna emphasises. “It’s vital that the DHSC acts now so that everyone can realise their right to live free from inhumane or degrading treatment and have access to good quality health care that’s close to home and easily accessible.”

The EHRC’s legal challenge is the first step towards improved care and autonomy for autistic people currently detained in mental health hospitals, and to prevent more people being sectioned. Alongside the tireless campaigning from families and charities, it’s time for real change, to ensure everyone has the necessary support to live an independent life.

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