Hundreds of Autistics locked away and violently abused in UK

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Official figures show that children, are increasingly being suspended or expelled from school because of "behavioural problems" – many of which include children on the autism spectrum. Some regions in the UK have experienced a 100% increase in these types of exclusions since 2011.

So despite policy rhetoric on "inclusive education" – where children ought to be educated in mainstream schools – recent figures show school exclusions are increasing: from 6,685 pupils to 7,720 between 2015-2016 and 2016-2017.

In my current research I interviewed mothers of adult children with autism and other social, emotional and mental health problems. They told me how their young sons had been a challenge in school. And how despite their requests for help, their sons received little support and ended up in the criminal justice system.

Estimates suggest that 30% of prisoners have a learning difficulty or disability and 60% have problems with communication – though this is arguably a conservative estimate, as many inmates choose to hide their disabling condition.

The mothers in my research all spoke of the overwhelming challenges of dealing with their child's disability while moving through the bureaucracy and barriers if the school and criminal justice systems.

They spoke of a lack of support, lack of access to professional help and an overwhelming lack of understanding about their son's disability, and the impact this had on their lives.

Under the current UK education system – where everything is based on grades and targets – there is little room for children who disrupt the smooth running of the school. These children are all-too often excluded and made to feel that they are worthless – as one teacher explained: "One kid wanted to go back into mainstream [school], but by the time he was 15, he realised this wasn't going to happen – he ended up in prison."

For as long as education focuses solely on academic achievement and continues to demand results rather than learning, children and their families will continue to be failed by the system. And, as my research shows, once a criminal pathway is trodden, it is incredibly difficult to find a way out.

This means those who need support the most often end up incarcerated.

. . . Unless you are really strong, and can find a strong advocate for you, . . .

Mental health scandal: My seven year battle to free my autistic son

Express, Jan. 20, 2019

' . . . The annual bill is estimated to be about £500million with the vast majority going to seven private providers. . . '

Mental health scandal: My seven year battle to free my autistic son

Express, Jan. 20, 2019

‘ . . . NHS digital figures revealed that 2,065 adults and 260 children with learning difficulties and autism are locked up. . . ’

A private health company is opening five secure units to lock up people with autism and learning disabilities – in the face of Government pledges to close down such centres amid concerns over abuse.

Elysium Healthcare, which is backed by a private equity group based in low-tax Luxembourg, has begun advertising for staff at ‘brand new, purpose-built’ units for people with learning disabilities.

‘This is incredibly disappointing to see,’ said Julie Newcombe, whose autistic son was held for almost two years against her wishes. The development highlights how keen private operators are to chase annual fees of up to £730,000 per patient from the NHS.

The Mail on Sunday has revealed how people with autism and learning disabilities are locked up for years in secretive units, held in solitary cells, fed through hatches, forcibly injected with powerful drugs and violently restrained.

The exposures have sparked four inquiries in England. Now the Scottish Government has launched its own probe after this newspaper found autistic people being locked up alongside murderers in maximum security Carstairs State Hospital in South Lanarkshire.

The Conservative Disability Group (CDG), an alliance of party members promoting inclusion of people with disabilities, has also raised alarm.

It is writing to Health Secretary Matt Hancock urging him to cut the number of people with autism and learning disabilities in secure units.

Elysium Healthcare, which launched in 2016, operates at 55 UK locations and has spoken about ‘delivering growth’.

It earned £53.6 million in its first year of operation, largely from the NHS. Leigh Allen, the firm’s nurse development lead and a former prison nurse, posted advertisements online last month seeking staff for five new secure units.

The healthcare firm is backed by BC Partners, a private equity group that also invests in bridal wear, pet shops and restaurants.

‘Elysium and its private equity backers wouldn’t be investing in these units if it thought the Government was genuinely committed to getting people out of inpatient hospitals,’ said Mark Brown, spokesman for the Rightful Lives campaign group.

A 10-year-old girl who lives with Asperger syndrome was hit over the head, pushed from a pier and began hiding in a garbage bin to avoid further bullying, the disability royal commission has been told.

On the first day of the hearings on Monday, Kerri Mellifont, the counsel assisting the commission, highlighted the case of Charlotte*, whose mother said she was hospitalised due to the anxiety caused by her treatment and eventually removed from the mainstream school.

“Charlotte has been subject to multiple instances of bullying and violence,” Mellifont said, quoting the mother. “The resulting anxiety was crippling, even affecting her walking and speech. The hospital wrote to the school with no response.”

“‘We’ve had such a horrible journey … it’s almost like because Charlotte’s different, she’s viewed as less.’”

The commission also heard from Dr Lisa Bridle, a disabilities expert, and the north Queensland disability advocate Deborah Wilson.

She said: “The things that are said to families are either, ‘we don’t cater for students with this level of disability’, ‘we won’t have the resources, we can’t ensure that your child will be safe if they enrol at this school. You will find the resources are somewhere else.’”

Bridle, whose adult son has Down syndrome, also gave evidence about the use of exclusion and seclusion in schools, as well as cases of abuse.

She was aware of one student who was told to sit on a dog mat in case they had a toilet accident. In another case, Bridle said a teacher who admitted hitting a child was defended by the school’s leadership.

“But when the parent approached the school leadership, one of the things … that were said to her was that he probably didn’t even know he had been hit,” Bridle said.

The decision to commence the commission on Monday was the source of frustration among some disability advocates, including the Greens senator Jordon Steele-John, who lives with cerebral palsy. They say people with disabilities have not been given enough time and support to safely and effectively engage with the commission.

The royal commission chair, Ronald Sackville, hit back on Monday: “It has taken more time than we hoped but these services are now in place and the relevant agencies are working hard to deal with the pent-up demand.

“Unfortunately there are one or two commentators whose contributions often appear calculated to discourage people from telling their stories to the commission and to increase their levels of anxiety.”

The commission has also faced criticism over the independence of two of the commissioners, who have previously served in the public services. It will hold four days of hearings in Townsville this week.

Bethany is 18 years old. She also lives with autism. And, for most of the last three years, she has been locked away in tiny rooms of psychiatric hospitals across Britain, with almost no human contact.

Matt Hancock, Britain’s health secretary, publicly apologized to her on Saturday “for the things that have gone wrong in her care.” Calling her case “incredibly difficult and complex,” he said that she was set to be moved to “a more appropriate setting before Christmas.”

The case has drawn national attention to the detention of hundreds of young people with autism or learning disabilities in Britain, and prompted an inquiry into the mental health system by a committee in Parliament. The conditions were so dire, the committee said, that the lawmakers had “lost confidence” in the system and its regulators.

The lawmakers called for an overhaul of the system, citing the testimony of parents and detained young people who described bruises and broken limbs, long stretches in total isolation and hours without treatment for physical injuries. As of July, more than 2,000 people with severe learning difficulties or autism were being held in institutions, including 680 people ages 0 to 24, the report said.

“It feels like some sort of nightmare,” testified one unnamed witness, a young man with learning disabilities. “It was not a safe place. It was not a treatment room. I got no assessment or treatment done. There was no care.”

Bethany’s case was also cited: Lawmakers said she had “spent most of her time in conditions that amounted to solitary confinement, with no access to treatment or therapy.”

Neither Bethany nor her father, Jeremy, can be fully named because of a court order in the case. Many details of the case are not publicly known, including why officials declared Bethany a risk to herself and others in December 2016. She has spent most of the past three years in near total seclusion.

Her autism manifests with “all-round anxiety,” her father, Jeremy, said by phone on Sunday. “Imagine you are walking through a multistory car park, late at night, it’s dark, suddenly the lights go out and you hear footsteps behind you — that anxiety level is Bethany’s baseline of anxiety,” he said.

He recalled the first time he saw her after she was taken to St. Andrew’s Healthcare in Northampton, England, in December 2016 under the Mental Health Act, which allows the authorities to mandate detention in some cases.

“I wasn’t even told she was in seclusion,” he said. “I was led through a series of corridors, it was one locked door after another down these corridors,” he said, adding the scene resembled one from the Hollywood thriller “The Silence of the Lambs.”

He then saw his daughter behind a window.

“I had to kneel down at the hatch to talk to her,” he said. “It was horrific, barbaric.”

The local authorities said she was taken to St. Andrew’s temporarily, so that her medication could be reviewed and she could receive therapeutic intervention.

But within 10 days she was put into what her father had previously described as a “cell.” And, in accordance with the Mental Health Act, she was stripped of her legal rights to freedom, he said on Sunday.

She was briefly moved to a “community placement,” funded by the local council. But after having lived in isolation for more than two years, she was quickly overwhelmed by having to run a house on her own, her father wrote in a post on his blog.

After that she went to a temporary setting in an adolescent psychiatric intensive care unit. She grew to trust the staff there, visited the grounds, and eventually was allowed outside the unit in a car.

A few months after she turned 18, she was moved to a medium-secure hospital in Wales. She has lived there since June, in a single room 10 feet wide, with green-tinted walls and fluorescent lighting, her father said. There is no furniture — just a four-inch mattress, an en-suite toilet and a shower.

A window allows sunlight to filter in, but it’s too high for her to look out, Jeremy added.

He sued the National Health Service England, the local authorities and St. Andrew’s hospital to challenge her detention at St. Andrew’s from December 2016 to February 2019.

The parties reached an agreement at mediation in September, and both N.H.S. England and St. Andrew’s Healthcare accepted that the care that Bethany received had not always complied with standards.

“This affected her well-being and made it harder for her to return to live in the community,” they said in a joint statement that was posted in Jeremy’s blog. She remains in the medium-secure facility in Wales.

Mr. Hancock, the health secretary, called Bethany’s case “heart-rending” and said on Saturday that he has insisted on “a case review of every single person in those conditions.”

An N.H.S. investigation report, released last month, found that “psychological harm and Beth’s human rights” were “inadequately considered” during her seclusion and segregation, adding that her physical environment was “inappropriate.”

Jeremy said Sunday that he had first heard of the health secretary’s new plan to move his daughter the day before on British television, as Mr. Hancock apologized to Bethany during an interview with Sky News.

He said the last time he had spoken with the health secretary was last year; he accused him of making up the pledge “on the spot” and of “electioneering” ahead of Britain’s general election on Dec. 12.

“Any move for Bethany needs to be properly planned, properly resourced, but, more importantly, properly transitioned,” he said.

“You cannot just lift her on one day from a surrounding and drop her stone-cold into a new one,” he said, adding that she would need to learn to trust the staff, and they would need to learn how to work with her.

Since Jeremy started speaking to the British news media again in the last 10 days, there has been a dramatic change in Bethany’s care, he said. She is now allowed to go to the courtyard, sometimes for two to three hours a day.

Harriet Harman, a lawmaker for the Labour Party and the chair of the parliamentary committee, said that regulators had failed to sufficiently check the system.

“It has been left to the media and desperate, anguished parents to expose the brutal reality of our system of detention of people with learning disabilities or autism,” she said. “The horrific reality is of whole lives needlessly blighted, and families in despair.”

The committee has recommended legal changes that would narrow the Mental Health Act criteria to lessen the risk of inappropriate detention.

Jeremy, a former teacher who became a truck driver to devote more time to his daughter, is hopeful that, given the right support, Bethany will be able to lead “as near a normal life as anybody else.”

“Beth wants to learn to drive, she wants to go to work, she wants to have relationships,” he said. “We just need to get her back into the community.”

Desperate to know how her autistic son Ryan was coping after being detained for years in an NHS mental health hospital, Sharon Clarke dialled the telephone number for the ward again, struggling to understand why she couldn’t get through – she had no idea then that both her and her husband’s telephone numbers had been deliberately blocked by NHS staff.

Whoever was responsible has never been identified but the intentional act in October 2019 was yet further proof for Sharon that her son was in the wrong place and needed help to get out.

The Humber Centre, in Hull, is a secure forensic psychiatry unit, more commonly used for treating those who have committed crimes because of a serious mental illness. Ryan Addison has been locked up by the NHS having never committed a crime.

For the last four years he has been isolated in long-term segregation and monitored at all times by at least three staff. Over the years, he has been so heavily medicated with powerful drugs he has had to have 14 teeth removed. He was fitted with dentures but they were lost 18 months ago and have yet to be replaced, his mother says.

Hospital reports seen by The Independent show he has also suffered bruises after being restrained by nine staff, as well as a broken arm and a broken foot. There have also been suggestions by staff in reports that he shows signs of sexual abuse.

It has been 14 years since Ryan, now aged 31, was first taken to hospital under the Mental Health Act and his doctors, nurses, NHS managers and even a tribunal judge all agree he should not be languishing in detention. But despite the promises from the NHS to get him out, he is still there. And he is not alone.

The latest data published this week showed there were hundreds of patients diagnosed with autism detained in mental health units in England, and despite promises to get them out the numbers are rising, having more than doubled from 295 in March 2015 to 610 in June this year.

In total, there were more than 2,000 patients with both learning disabilities and/or autism detained in hospitals. They are locked away from their families; deprived of a normal life in institutions that far from treating them, actually exacerbate behavioural problems making it even harder for them to be released.

Ryan’s mother Sharon tells The Independent she regrets the day she called the NHS for help after her son, then just 17, self-harmed with a razor, causing superficial injuries months after he had been prescribed the anti-psychotic drug olanzapine.

“I knew it was a cry for help. I rang the NHS crisis team and asked for help. They came and took him into hospital.

He was crying to come home but I told him he had to stay because they were going to make him better. All these years later, look where we are.

“They have not only stolen him away from me, they’ve stolen his youth away from him.”

Initially, Ryan was detained in an open mental health hospital but as his behaviour deteriorated, brought on by detention, he was moved to more secure units. In total he has spent nine years in secure forensic mental health wards.

He was finally diagnosed with autism only at the beginning of 2018 and his hospital reports, seen by The Independent, make clear he has suffered a form of post-traumatic stress disorder as a result of being detained away from his family for so long.

On visits to see him Sharon was told for years she could not hug her son, although this has been relaxed since his autism diagnosis. She was not allowed to take pictures or see the room where he lived. Ryan is brought to her when she visits him.

“I can’t see where my son lives, where he eats. I’m not allowed. You imagine all sorts of things, is it just a mattress on the floor?”

Between October 2017 and February 2018, Ryan and his mother were unable to see each other. He had been put into seclusion by staff after showing aggression and violence and was not allowed any contact at all with the outside world.

His mother says Ryan had never been violent before being detained and she believes that, like many autistic people in hospital, his behaviour is being made worse as he becomes more institutionalised.

“He did have problems. He hated surprises but apart from that he loved animals and was a proper family person. He was never violent or aggressive, never.

“I can’t believe the things they say he has done, it’s just not my son. He has become institutionalised. I want him to come out and become the son I know.

“If I was locked up like him I would probably react the same way.”

When her telephone number was blocked from being able to call the hospital ward last year it was a final straw for Sharon who is demanding the NHS releases her son from the hospital into a community-based placement.

“It was a weekend when it happened. They were short-staffed, and I only phone up twice a day in the morning and night to check Ryan is ok.

“I tried calling the ward and it was just engaged all the time. I tried hours later and couldn’t get through. I tried on my husband’s phone and got through then I tried mine and it was still engaged so then I knew. Later they blocked my husband’s phone too.

“You think of nurses as caring but that is not caring. The trust I had with the hospital to look after my son has gone out the window, I can’t trust them now.”

Sharon made a formal complaint and in its response last December, NHS England’s regional director of commissioning said the Humber Foundation Trust had investigated and “confirmed that you and your husband had had your phones blocked” but added: “Due to the number of staff that had been on duty over that time they were unable to determine who had done this. Therefore, they are unable to bring about a disciplinary investigation. Senior managers were clear with the team that this was unacceptable and underlined that this action amounts to misconduct.”

The letter promised NHS England and the Hull Clinical Commissioning Group (CCG), which is responsible for commissioning NHS services in the area, were looking to develop a community care package for Ryan. Sharon says she has heard these promises before and nothing has been done.

Dr Sushie Dobbinson, a speech and language therapist at the hospital, expressed her fears for Ryan in a document dated July 2018. She said: “Ryan’s environment continues to concern me as it does not allow for meaningful work to improve his presentation. The literature and our experience strongly indicate that seclusion in autistic spectrum disorder (ASD) exacerbates symptoms and is detrimental to mental health.”

She warned patients with autism “often become more inward looking the longer they are secluded”.

She said the situation meant Ryan was at risk of harm, adding: “I continue to advocate for Ryan to be moved to a unit suitable for his ASD needs and to warn of the consequences of long-term seclusion for this very unwell young man.”

An independent tribunal earlier this year backed up her fears, saying there were concerns that the hospital was “inappropriate because the high level of security is likely contributing/leading to an increase in disturbed behaviour and is therefore counter-therapeutic”.

But the tribunal was clear who was at fault, saying: “Of equal concern is a lack of progress by the CCG and NHS England in formulating a discharge plan. Significant periods of time between meetings have been noted.”

An independent care treatment review in April also red-flagged multiple concerns about Ryan’s care and his prolonged detention. It said the panel had “great concern” for Ryan’s “experience of care and safety”.

This situation has had an effect on Ryan. Staff have described him struggling with his self-esteem and sometimes telling himself off. They report he sometimes paces, punches walls or the air. His levels of violence and aggression have got worse.

Sharon told The Independent: “If they don’t get him out this year or in the next couple of months I don’t think there will be much left to get out.

“Something needs to be done as soon as possible. They are ruining people’s lives.”

Clarke says she has asked for meetings with hospital bosses and contact details for Hull CCG but these have not been provided.

This situation is being repeated across the country for hundreds of other patients with specialist autistic needs.

Jane Harris, from the National Autistic Society, tells The Independent Ryan’s treatment by the NHS was “inhuman” adding: “We know from Ryan’s autism diagnosis he’s been put somewhere that is often doing the opposite of what he needs. He is being traumatised by an attempt to treat him.”

She says the case and many others like this raise questions about whether his human rights are being breached: “It’s clearly a human rights issue. How can it not be? He hasn’t got a family life at the moment.”

She says it is too easy under the Mental Health Act to detain people with autism, adding: “These powers that are meant to be used for emergencies are ending up being used for years and years and totally changing the course of someone’s life.

“We’re in this ridiculous situation where hundreds of autistic people are in these kind of units, but actually the Mental Health Act code of practice says they shouldn’t be.

“It’s known that if you don’t give autistic people the kind of environments and the kind of support that they need, then their mental health will deteriorate, that’s just a fact. It’s totally morally wrong and indefensible.”

She says there are many examples of people being released from hospitals and going on to live safely in the community.

“This is the really ridiculous thing about the situation. It’s not useful for anybody. It’s awful for Ryan and it’s awful for his family. But it doesn’t help the taxpayer either.”

Earlier this week the government announced a new £62m fund, over three years, to help local councils pay for bespoke care packages in the community which should help ensure patients are discharged from hospital. But councils have faced increased costs during the coronavirus crisis with social care estimated to need up to £10bn by the Health Foundation.

A report by parliament’s Joint Committee on Human Rights last year highlighted there were widespread breaches of human rights for patients detained in hospitals.

Health secretary Matt Hancock asked Baroness Hollins to oversee independent case reviews for each detained patient.

In a joint statement from Hull CCG and Humber Teaching Foundation Trust the organisations said they were working together “to support Ryan’s future care needs. We communicate regularly with his family with the aim of ensuring we are able to provide Ryan with a future place in the community, and level of care which is suitable for him. Above all, we want him to live a full and active life out of hospital.

“The recommendations of all independent care and treatment reviews are implemented as appropriate and changes required are made in a timely way to address any issues raised.”

A spokesperson for NHS England said: “There is complete agreement that alternative options need to be available.”

Dannielle Attree has spent half of her life being subjected to state-sanctioned abuse. She is only 24 years old but over the past 12 years this bright young woman has been held in solitary confinement, chemically coshed with drugs and violently restrained by groups of adults. She has been locked up in 18 different mental health institutions, forced to sleep on the floor, developed terrible eating disorders, been sexually assaulted by a staff member and become so despairing over her future that she has frequently tried to kill herself. All because she has autism in a country that does not care.

Last week, after all those years of torturous treatment, she was moved for the first time to a specialist centre for people with autism. It is hundreds of miles from her Kent home, yet her mother Andrea felt only relief as she travelled back from settling her daughter into a place that finally understands her condition.

She is, however, under no illusions about the scale of challenge in trying to help ease Dannielle back into society after spending so long sectioned under mental health laws in unsuitable psychiatric institutions. “She is barely existing now,” said Andrea, a retail worker. “They have utterly broken my daughter.”

These would be unacceptable conditions to hold a prisoner convicted of a terrible crime. Yet this is permitted for a person with autism supposed to be getting help from the sanctified NHS – and often at huge expense from vampiric private companies ripping off taxpayers.

So what kind of society deems it acceptable to break citizens simply because they have autism? What kind of health and care system allows such abuse to carry on unabated rather than providing decent support so people can live fulfilling lives in their communities? What kind of dismal medics, hopeless bureaucrats and pathetic politicians keep saying they know this is wrong but fail to end the misery? And what kind of nation is so bigoted that it averts its gaze from grotesque mistreatment of a minority? The answer, sadly, is our own.

This week marks the 10th anniversary of the moment this scandal erupted into public view with the BBC’s Panorama exposé of abuse and neglect at Winterbourne View. An outcry led by the prime minister sparked prosecutions, six prison sentences and pledges to stop inflicting cruelties on citizens with autism and learning disabilities.

We heard promises to end use of assessment and treatment units that incarcerate people behind locked doors. Yet total numbers held have barely budged, with average length of stay more than five years, despite a barrage of inquiries and incisive reports plus several more disturbing documentaries. It is, as the Rightful Lives campaign group says, sickening that this barbarism is allowed to continue.

One Westminster source told me they focused on freeing people but failed to stop more being sent into the system. Alicia Wood, then a government adviser, blames the lack of accountability for the health commissioners responsible for inappropriate placements along with insufficient ring-fenced funds to stop the battles between health and social care over paying for support packages.

Regardless, it is unforgivable that so little has been achieved to stop the torment. This scandal exposes wider failings of inadequate autism diagnosis, fat cat private operators milking taxpayers, flawed psychiatric services reliant on restraint, mental health laws that lack accountability, watchdogs that lack teeth, political impotence and a shattered social care system even before the pandemic.

There has been so much talk, so many targets, so little effective action.

This scandal exposes Britain as a place that happily consigns people such as Dannielle into hell – then callously turns its back on its modern-day update

The latest monthly Assuring Transformation NHS Digital data shows that in September 2022:

In total 1,965 autistic people and people with learning disabilities are in inpatient mental health hospitals in England
1,195‬ (61%) of these people are autistic

Around 175 of these are autistic people under 18.

This is the most up-to-date record of how many autistic people and people with learning disabilities, both adults and children, are currently in inpatient units in England. It also shows how long they have been in these units for, when their care and treatment is checked and what kind of unit they are in.

Collecting this information is important because it holds the Government to account on its commitment to reduce the number of people in these institutions.

Despite some progress moving people with a learning disability out of hospital and into the community, the number of autistic people in inpatient facilities has increased. In 2015, autistic people made up 38% of the number in hospital, now it is 61%.

It is widely recognised that for most autistic people, care in an inpatient unit is rarely helpful – in fact, it can be deeply damaging.

Wards can be noisy, bright and unpredictable. Without reasonable adjustments to the environment, and support from a professional who understands autism and how to adapt care, it can be completely overwhelming, particularly if you have an extreme sensitivity to sound, light or touch. It can increase someone’s level of distress, which can lead to further restrictions and make it even harder to move to support in the community. On top of this, there aren’t enough of the right type of mental health and social care services in the community for autistic people to move into.

The average length of stay is around five and a half years. And we continue to hear alarming cases of overmedication, seclusion and unnecessary restraint.

In 2011 shocking abuse was uncovered at Winterbourne View Hospital, an inpatient unit for people with learning disabilities. This scandal led to the acknowledgement that there is a significant number of autistic people, those with a learning disability or both, stuck inappropriately in inpatient settings – largely because services to support them in the community simply do not exist.

The Government’s response came in the form of the Transforming Care programme which aimed to close up to half of the inpatient mental health beds and move people back to their local communities by 1 June 2014. This did not happen.

In 2015, NHS England published a three-year closure programme and national plan called Building the Right Support. This set out how the NHS and local authorities in England propose to improve the lives of autistic people and those with a learning disability or both in inpatient settings.

The key promises they aimed to achieve by the end of May 2019 included:

Closing 35-50% of inpatient beds for autistic people with or without a learning disability.
The right support would be developed in communities to support these people.
Alongside this, NHS England published a ‘service model’ setting out all the local support that should be available in each area by March 2019.

But this is still not the case. There is simply not enough of the right type of community services, which is a key reason why autistic people are still being admitted to inpatient care and why it’s often so hard for them to move back to the community.

Alongside autistic people and families, we have been highlighting these injustices and campaigning for better support and services from the Government and the NHS for years.

With funding from the Garfield Weston Foundation we are developing a mental health module to help professionals, parents and carers better support autistic young people aged 13 – 18 years-old. We are also helping autistic people and families who are detained or at risk of detention directly, via our Autism Inpatient Mental Health Casework Service for England.

The Government recently published a ‘Building the Right Support Action Plan.’ This proposes some changes to the way that autistic people and people with a learning disability get care in the community and in hospitals, as well as the training that medical professionals will receive.

NHS England’s Long-Term Plan reinstates its pledge to reduce the number of autistic people or people with a learning disability in mental health hospitals.

It has also pledged to:

transform mental health care so more people can access treatment
continue to develop services in the community and hospitals.

The overwhelming majority (93%) of autistic people who are detained in hospital are put there using the Mental Health Act 1983. We and hundreds of thousands of campaigners have been calling for changes to mental health law for years, so it respects autistic people’s rights.

If someone is admitted into hospital, it’s essential that this is for as short a time as possible, that they’re supported by people who understand autism, and in an environment that reflects their needs.

In January 2021 the Government first announced promising proposals for change to mental health law and in June 2022 a draft bill to reform the Mental Health Act was published. The bill could stop people being sectioned just because they’re autistic and make it easier for autistic people in hospitals to leave. This is a big step forward.

The Joint Committee is now asking people for their opinions to help them to decide whether any changes need to be made to the Bill. To help the Joint Committee hear from more people an Easy Read survey on the draft Mental Health Bill has now been released. It is here and can be filled out before the 30th October.

It’s important to remember that these changes will take years to come into force. To reach its target to reduce the number of people in hospital, the Government needs to do more to stop autistic people reaching crisis. This means investing in better social care and mental health services that meet the needs of autistic children and adults. Without a fully funded social care system that provides the support autistic really people need, the scandal of autistic people being wrongfully held in mental health hospitals won’t change.

If you judge a society by how it treats its most vulnerable then what does it say about the UK when people with learning disabilities are still locked up indefinitely?

We are talking about people who are not locked away in secure hospitals for years on end because they’ve committed a crime - they’re incarcerated because there is a lack of funding for appropriate care for them in the community.

Last night, our ITV News investigation into this practice heard about Adam Downs - a 31 year-old man with learning disabilities and autism - who has been detained his entire adult life while his mother fights for his release.

We also uncovered disturbing allegations from a whistleblower - a senior nurse who has worked in these institutions for over 20 years.

She told us people with learning disabilities and autism are being medicated and sedated when they don’t need to be, and that they are put into solitary confinement for prolonged periods, mainly because there is a shortage of staff in the wards meant to be caring for them.

A lack of staff training means they are misdiagnosing people and medicating them for conditions like psychosis, when it is more likely the inappropriate ward environment that is exacerbating their behaviour.

The noise, the lack of the right kind of sensory stimulation, the sudden changes to routine, being physically touched or even forcibly restrained - all of these are known to be triggering for someone with autism and learning disabilities, and yet all are common practice in the secure hospitals meant to be providing care.

You wouldn’t shine a flashing light in the face of someone with epilepsy, so why put someone with autism and learning disabilities in an environment that is known to provoke a negative reaction?

To make matters worse, if the patient reacts negatively - lashing out, hurting themselves or others - such behaviour might just be held against them and viewed as a justification for keeping them locked away in that environment even longer.

That’s the catch 22 of this whole system: the ‘treatment’ contributes to making the patient worse, but the worse the patient gets, the less chance they have of being allowed out.