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In this article, we look at what’s happening to address the crisis and how people can get involved. If you want to find out more about what’s created this appalling situation, read our recent Beyond Transforming Care report.

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 (sometimes called Assessment and Treatment Units or ATUs) – 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% and 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 actually gone up in this time. This is the opposite of what should be happening. We believe the law needs to change and the NHS and councils need to invest in the right type of support. This is a national scandal and needs to end.

What's happening now and how you can help

Thanks to autistic people and families telling their stories and journalists, charities and individuals drawing attention to the scandal, it is now back on the national agenda. Decision makers are listening and there are a number of things happening. Here is more information about them, and how you can get involved:

  1. Care Quality Commission (CQC) - The CQC are carrying out a ‘thematic review’ on the use of restraint and seclusion following a campaign from a father of a young autistic woman called Bethany. This is an important opportunity to make sure the system holds providers and hospitals who are using too much restraint and seclusion to account. The review will take some time, but it will be looking for evidence from autistic people and their families. We will let you know when there is an opportunity to get involved. Find out more about the review on the CQC’s website.
  2. Open letter on the Mental Health Act - Sign our open letter to Matt Hancock, Secretary of State for Health and Social care, calling for him to end to the national scandal of autistic people and people with a learning disability being detained in in-patient units under the Mental Health Act.Autism is 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 and they do not have a treatable mental health illness. We believe the Government need to look again at this definition.
  3. Joint Committe on Human Rights - This is a committee of MPs and Lords in Parliament who carry out investigations on human rights. They are running an inquiry on this issue and have been asking to hear the views and experiences of people who have had experiences of being in mental health hospitals. Find out more on the Parliament.UK website.
  4. The Children's Commissioner - The Commissioner, who has statutory powers to visit services and hospital, has said that she is concerned about the number of vulnerable children in mental health hospitals and promised to look into this. You can find out more about in this article by Children and Young People Now.
  5. The NHS Long Term Plan - The Long Term Plan was published early in 2019 and sets out the NHS’ priorities for the next 10 years. It included a target to reduce the number of autistic people or people with a learning disability in mental health hospitals by at least 50% compared to 2015. Some people are concerned that this target will be missed, just like other targets. NHS England need to give more detail about what they are going to do to make sure that this time Transforming Care really works. Read more about the Long Term Plan and our response on our news story.
  6. Petition - Sign this petition to stop the detention of autistic people in ATUs. If enough people sign it, there is a chance there will be another debate in Parliament to raise the profile of this issue and explore what needs to be done at national and local level to end this crisis.

Further information

Why autistic people are still trapped in mental health hospitals and what needs to change

We believe there are three main reasons why there are too many people ending up in mental health hospitals when they shouldn’t be, for too long and too often being treated badly:

  1. Training - professionals working in mental health hospitals do not get the right training around autism so people are ending up being given treatments which are completely inappropriate if you are autistic. We also hear from autistic people who tell us that staff in community mental health services often don’t understand autism. This means if people reach crisis point they might find themselves being admitted to a mental health hospital
  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 and people with a learning disability can be detained when they do not have a treatable mental health illness. This puts them at greater risk of over-medication and restrictive practices. Often as a result of being in environments that are inappropriate, their behaviour escalates due to their distress, which results in further restrictions.

We need to fix these problems. We need to end this scandal.

Tim Nicholls, Head of Policy at the National Autistic Society, said: “We hear extremely worrying stories of autistic people stuck in mental health hospitals and, in some cases, subject to seclusion, restraint and over-medication.

“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 this is delivered by staff that understand autism - and in an environment that meet 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.

"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% and moving people into specialist support in their own communities. But, despite some progress in overall numbers, NHS figures for the number of autistic people in mental health hospitals – especially those without an accompanying learning disability – have actually gone up in this time, not down.

“This is unacceptable and shows that the Transforming Care programme has failed autistic people. We’ve been campaigning for the NHS to act and, in its Long Term Plan, it does restate their pledge to reduce the number of autistic people or people with a learning disability in mental health hospitals.

“But for autistic people and families to have faith in this latest target, the NHS and the Government need to back this up with urgent action. The right services have to be in place for autistic people who need support, the Government must fix the crisis in social care funding in its long-awaited Green Paper and, importantly, review the way the Mental Health Act is used for autistic people.

“We’re talking about the lives of some of the most vulnerable people in the country here – the Government and NHS England must now show leadership.”

Read more

Read more stories about autistic people who’ve been stuck in inpatient care in our Transforming Care: our stories report and our latest reportBeyond Transforming Care.

For information about what to do if an autistic family member is at risk or has been admitted to or discharged from a mental health hospital, visit our page on autism and mental health.

Bringing us Together have produced this very useful ‘Survival Guide’ for care and treatment reviews.