When Elliot Dodds had a mental health crisis and went to hospital for assessment, his family thought he would be out in a matter of days once his medication was reviewed.

But four years later, the autistic 27-year-old was still in hospital – kept in long-term segregation in County Durham – and relatives had instructed a solicitor to fight for his release.

Beckii Davis, his older sister, said: “Elliot really didn’t want to be there. He was distressed and caused property damage. He was restrained and he was injured several times.

There was no therapeutic intervention while he was in hospital. I literally felt like it was just a baby-sitting service.

Elliot, who also has epilepsy and learning disabilities, had been living at home with the support of carers when his mental health deteriorated after a couple of family crises. He went voluntarily to hospital for assessment but then was sectioned a month later to the shock of his mum and sister. 

It’s a story, sadly, that many families will recognise. A total of 1,325 autistic people and 710 people with learning disabilities are currently being held in inpatient units. Their average stay is five and a half years.

Successive governments have pledged to halve that figure after scandals like Winterbourne View in 2011 and Whorlton Hall in 2019. But instead, the numbers continue to climb. 

Autistic people in crisis can be detained in mental health units either for assessment or indefinitely under the Mental Health Act, which defines autism and learning disabilities as “mental disorders”.

Kirsty Stuart, the Newcastle-based solicitor who acted for Elliot Dodds, said: “Once someone is in an inpatient unit, it can be very difficult then to get them back out. 

Families say they were told their relative would be in for a week or two. Then suddenly, they get to 5-6 weeks. I’ve seen clients who are now 16 years down the line.

Inpatient units are rarely ideal environments for autistic people. Noisy wards, alarms, bright lights, overstretched staff, unfamiliar routines and being miles from home can lead to a vicious cycle of distress and restraint, medication or segregation.

Kirsty, senior associate in public law and human rights at Irwin Mitchell, said: “I had a client who had their teddy taken from them when they needed that little piece of home. Another was stuck behind a Perspex hatch with no interaction with staff.

“It may well be one incident that led a person into hospital. But then suddenly there’s incident after incident because of the distress they’re displaying and that stops the natural process of discharge planning.”

Mother-of-two Nicola has seen her 21-year-old daughter deteriorate since she was sectioned two and a half years ago after a crisis at university.

Nicola, who lives on Teesside, said her daughter has been moved between hospitals seven times, and has spent most of her time on psychiatric intensive care units (PICUs) which are meant to be short-term only.

“While she has been there, she has learned more self-harming behaviours and these are more frequent,” Nicola said. “Staff have to restrain her, then she goes into fight or flight mode and at times is given (PRN) medication to sedate her. She has been in seclusion for long periods due to behaviour caused by the environmental stress.

“On PICU the staff have been great but their priority is to keep her safe, so there are no therapeutic interventions. She has become institutionalised and relies on staff to initiate, leaving her disempowered. She has made little progress as an inpatient.

Sadly, hospital is her safe place and I worry about discharge, as no discharge plans have been made. I worry about how she will cope without the high level of support she has from nursing staff.

"Autistic people shouldn’t be in these places long term as it has no benefit. Sadly, due to unmet sensory needs, they struggle to find appropriate places that can accommodate them as they are limited - they are not in there for psychiatric reasons."

Nicola is now trying to set up a parents’ support group for families in her situation. “It’s very difficult to talk to people who don’t understand. A support group would give families an opportunity to talk and meet with others with lived experiences."

Elliot’s family celebrated getting him discharged last year but say the impact of their ordeal goes on. “It was traumatic for all of us and we’re still working through that, to be honest,” Beckii said.

Their solicitor Kirsty challenged Elliot’s care on human rights grounds after he was injured during restraint. That triggered interventions to improve his support and start the process of discharge planning which was progressed with an application made through the Court of Protection.

He now lives in a bungalow a short drive away from his mother’s home, supported by a care team, and enjoys trips out to the seaside, old railways and train museums. “Elliot is so much better now – you just have to look at him to see how different he is,” Beckii said.

He’s walking a lot. We couldn’t get him to walk when he was in hospital, now he’s going off for eight-mile walks. He has that sense of freedom now.

“People like Elliot don’t need to be shut away. They just need compassion, understanding and the proper support.”

• Irwin Mitchell holds free monthly legal surgeries to give advice to the families of autistic people and those with learning disabilities detained in hospital or those at risk of admission. To find out more, or to book a place, see https://events.irwinmitchell.com/atulegalsurgeries.
• The charity Mencap has guides for families of autistic people and those with learning disabilities detained in hospital, which can be accessed here: https://www.mencap.org.uk/advice-and-support/wellbeing/displaying-challenging-behaviour/meeting-challenge-guides-families

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