The “A” word – have we really progressed since bedlam?

 

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By Charlotte Lascelles

Autism – for some it’s an excuse by parents to pardon their children’s behaviour; for some it’s an excuse for bullying; and for others, it’s a reason to lock someone up. Yes, it may well be 2018 but there is still a stigma around autism.

I’m autistic, I have a condition called semantic pragmatic disorder which, in the best way I can describe it, is like having a really warped version of social anxiety. For me, my condition affects me in terms of communication and leaves me feeling anxious in some social situations or if I’m thrown into a scenario that’s unfamiliar. I sometimes don’t understand jokes and sarcasm, and I can have issues concentrating and taking in large chunks of information.

But at the same time it’s benefited me: typically people with autism can become obsessed with a certain object/activity/subject and become dedicated to perfecting their knowledge surrounding it. In my case, I became obsessed with writing and music and this has now allowed me to head towards my dream career, has given me a wonderful hobby and I’ve met many incredible people. Oh, and if I’m given a task I will see it through to the finish without fail: I will follow all instructions by the letter and will be organised. And I have a good memory: it freaks people out sometimes but I wouldn’t change it.

I did experience bullying in school because of my condition, more to do with people failing to understand autism and finding my behaviour erratic and strange. I can understand how I obviously appeared different to others, but it doesn’t excuse how I was treated. In this day and age one would think that that would be the worst that would happen to someone with autism: being bullied or discriminated against. But to my horror I discovered that there were people who were being kept in confinement due to their condition.

In an investigative article, Ian Birrell talked about Beth, a 17-year-old autistic girl who for the past two years had been kept locked up in a small cell with nothing but a bed and a chair while also being fed three times a day through a hatch. Her father described her environment as the scene in Silence of the Lambs when Clarice Starling walks the corridor to meet Hannibal Lector. The whole story literally sounds like a dystopian film: it’s pretty much the exact same as the descriptions of bedlam in Medieval times. Have we really gone back in time?

So how could this happen? Some believe that this is a result of underfunding of the NHS and parents having few options in coping with heavily autistic children.

Rhys Pitcher, 18 from Newcastle, has an older brother with autism and based on his experience isn’t shocked that there are stories much like Beth’s doing the rounds. “Autism is hard to live with. Having a mental disability is hard to live with if first of all you don’t get the funding because the person is deemed fit to work which has been a problem since 2007 and the fact that the NHS can’t sustain the amount of people who are autistic.

“The main problem here right now is that mental health is a big issue; autism can be put under that, since it’s starting to not be taken as seriously and the mental health service has been butchered. I can see this is torture for Beth who has been put into that situation but the NHS is being butchered even when the funding has increased each year and this could have been the parent’s last resort.”

Seven years ago the Winterbourne View scandal exposed the lack of care and abuse of vulnerable people by their own carers. Covered in a disturbing episode of BBC Panorama, the care home was later closed down. Since then ministers made promises to remove people with learning difficulties from units like Winterbourne View. In a review made three years ago there were pledges to cut down the number of disabled people in treatment units by 30% by March 2019. But instead, according to Birrell, more than twice as many children have been housed in specialist hospitals and around 2,400 adults are still in these institutions. What has gone wrong?

Luke Alyward, an information officer from Leeds Autism AIM (Advocacy, Information and Mentoring) was in disbelief: “Locking autistic people away in care homes without speaking to them and asking what support they would like is shocking. All autistic people should have their voices heard, using appropriate communications for people who are not (currently) verbal and have a say in where they live, what support they need and what services they would like to access.

“Although there has been some progress in the way autistic people are treated by society, the cases in places such as Winterbourne View and Mendip House have shown there is a long way to go before we achieve equality of treatment with non-autistic people. To this day, autistic people are subject to inequality in a number of areas – employment, education, housing, access to services. Listening to us would be a good start to address it.”

David Newell, a development manager for Autism Specialist Services, found this story to be, sadly, unsurprising given both the lack of understanding of the condition and the lack of funding to support autistic people. “The main issue is the difference in services available as there is dreadful unevenness. I don’t think we’ve progressed enough as a society. At a conference I went to recently, which had a range of speakers who are autistic, it was discussed how the world is not really adopting or adapting to the needs of autistic people.

“There is good work being done as there has been more awareness of the condition, but it’s still like getting the general public to perceive something that doesn’t exist and trying to get them to understand the complexities of the condition.”

Since the publication of Birrell’s article, Beth’s father, Jeremy, has had a gagging order lifted by Walsall Council that had previously prevented him from speaking out about his daughter’s case. The government has commissioned a review by the Care Quality Commission into the use of restraint, prolonged seclusion and segregation for people with mental health problems, a learning disability and/or autism. It is not due to report in full, however, until March 2020, with interim findings being released in May 2019.

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