A “Horrific Reality”: The Inhumane Detainment Of People With Autism In The UK

It has been a month since the UK parliamentary Joint Committee on Human Rights published a report outlining the severe human rights abuses that occur in the detainment of young people with autism and other intellectual disabilities in mental health hospitals in the UK. The Committee reported “grim” evidence about the conditions that these people were subject to. Under the Mental Health Act in the UK, autism is incorrectly included in the definition of “mental disorder”. This means that people with autism can be involuntarily detained in a mental health hospital for an indefinite time without a treatable mental health condition, according to the UK National Autistic Society. People are detained under the Act because they need urgent treatment for a mental health disorder and are at risk of harm to themselves or others, according to the UK National Health Service. However, the committee found that this detainment was inadequate and said it had “lost confidence” in the system, noting that it has mainly been left to the media to expose abuse that has been occurring.

There was some shocking evidence that the committee heard in its inquiry – one mother detailed the way her son had his arm broken by a carer when he was restrained and was not taken to emergency care for 24 hours. Another woman reported her son being kept in solitary confinement for nine hours, with a “rule” that he could only be let out when he was quiet. For someone with his anxiety and sensory presentation, “there was no way this was possible”. He would “bite the doorframe out of desperation”. Another example is that of Bethany, who was kept in solitary confinement and fed through a hatch in a door when she was only 15. Her father recently won a court settlement that declared her care as inappropriate and inadequate, according to the BBC.

The report outlines the “predictable pathway” that allows these abuses to occur. Detainment of people with autism occurs as part of a vicious cycle when the public social care system fails under-supported families who often have not had a full assessment or diagnosis. Usually, there is some sort of trigger that unsettles the young person (such as a parent falling ill) and causes their condition to deteriorate. This then prompts professionals to make an assessment. This is done without consulting the family, and young people are taken to facilities miles away from their home and usual way of life. This often causes increased agitation and further deterioration, according to the report.  It is a well-known fact that solitary isolation is not good for a person’s health, and the fact that it has been used as a method to supposedly ‘treat’ people with autism is appalling.

Autism and other neurodivergent conditions have a history of being mislabelled and misunderstood by the public healthcare system, being mistakenly treated as something that needs a cure. There is a society-wide lack of awareness of how autism presents itself, which means that people are often ostracised and suffer from systemic abuse from healthcare professionals that do not understand the condition themselves. As Harriet Harman MP QC, the chair of the human rights committee puts it, these horrific human rights abuses do not “fit our society’s image of itself as one which cares for the vulnerable and respects everyone’s human rights”. In a democratic and peaceful society, it is unacceptable that these draconian practices are allowed to continue.

Since the report’s release, the UK government has announced that individual reviews of the care of all 2,250 patients with learning disabilities and autism who are being held in mental health hospitals will take place over the next 12 months. The government has also rolled out a £1.4 million mandatory training programme for all NHS and social care workers that focuses on understanding learning disabilities and autism. This is commendable, however social care workers already working with people with autism in a treatment context should already have this knowledge as a mandatory part of their job description. These measures will provide a good stopgap in the short term; however, the committee’s report calls for a more intensive overhaul of the system, and groups such as Mencap are making the same recommendations.

Dan Scorer from Mencap highlights the more fundamental issue with why the system has been failing – a consistent underfunding of the social care system. This means that carers and health professionals do not have the training and education needed to adequately provide care. Further, there is a lack of resources that means that people are treated in horrific ways due to the lack of adequate facilities and rehabilitative programmes. According to Mencap, almost a quarter of doctors and nurses have never been given training about learning disabilities, and half of doctors and nurses think that a lack of knowledge might be contributing to avoidable deaths. One study estimates that 1,200 people with a learning disability die each year due to avoidable death because they did not have timely access to good quality healthcare. The parliamentary report notes that this is because of a lack of political will to confront these issues, as well as a lack of accountability for those in power. To ensure that these human rights abuses do not continue, lawmakers in Britain need to re-evaluate the Mental Health Act to ensure that it does not overextend its power to detain those at risk. Autism is not a “mental health disorder” and should not be defined as such under the Act. The outdated legislation needs to updated to reflect that. Disability rights groups, such as the National Autistic Society, are making sure to lobby UK politicians ahead of the upcoming elections, to ensure that these human rights abuses are not continued. People on the autism spectrum are often under-represented in mainstream discussions of human rights; so there needs to be an active campaign to raise awareness and hold the government accountable.

It is unacceptable that this inhumane detainment has been allowed to happen in the UK. It is good that the UK Parliament launched this inquiry and has since taken steps to provide some redress. However, that does not fix the years of abuse that some have already experienced, which means that compensation may be needed. There is hope for the future, shown by the review of care happening in UK mental health hospitals. However, to make sure that this kind of treatment does not continue, there needs to be action on a legislative level to curb the power of detainment. Otherwise, peace and democracy are undermined in the UK when it does not protect all members of society.