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Autistics Incarcerated: The dark underbelly of the NHS

This evening, I took it upon myself to watch Channel 4’s documentary on the abuse of Autistic people in psychiatric institutions. As I sit here reflecting on the way the Autistic participants were treated by those meant to care for them, I will confess that I have shed some tears of my own.

I am one of the Autistic people unlucky enough to spend time in carcerative care.

I have witnessed restraint used as punishment. I have been sedated so heavily that it caused me to develop an irregular heartbeat. To this day, I do not publicly name the psych ward where this happened for fear of retribution. Such is the nature of the power imbalance between Autistic people and the mental health system.

The idea that an institution that is legally considered to be “a place of safety” can be so traumatic seems almost absurd. Yet, there are innumerable Autistic people locked away in these places, experiencing things that no human should. Things do not improve upon release; section 117 aftercare so often goes by the wayside.

Autistic people are treated, at best, as a nuisance in the staffs workplace. Staff so rarely seem to consider that they work in a place we are forced to live. The privilege is theirs, not ours. To assume that we should be grateful for being detained indeterminately is to fundamentally dehumanised us. Autistic people deserve softness and caring, not a lesson in how much the mind can handle before your inevitable demise.

This is an issue that the NHS fails to address year on year. I believe it’s because Autistic people are framed as burdensome and irritating in a system that our government has ensured is on its knees.

Now is the time to speak out. I would ask that if you care to share your own experiences, you do so by using the hashtag #AutisticsIncarcerated.

I choose those words because that is the nature of inpatient treatment. It is not a hospital environment. Each and every one of us deserves to know that we have a place to turn at our darkest moments. We shouldn’t have to fear seeking help.

Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

Undiagnosed: inpatient treatment, pre-diagnosis

Something I haven’t spoken about in great detail is the experiences I have had in an inpatient psychiatric facility. There was good and bad in the experience, but unfortunately, it was overall, quite traumatic.

I have been an inpatient twice in my life, the first was because I required an inpatient detox to help me get sober, the second (the one I will be focusing on) was due to psychosis.

It was around the beginning of May 2016 when it happened. My voice hearing and paranoia had been getting worse since finding sobriety, and one night I just snapped. My mother found me catatonic in the living room, muttering about things that she didn’t understand.

An ambulance was called and I was taken to the local accident and emergency department for immediate psychiatric assessment. Upon assessment, it was made clear to me that I could go into the psychiatric hospital voluntarily, otherwise they would section me.

The psych ward was a scary place, many of the patients (to my eye) were far more ill than I was. I felt as though I was being held without due course.

At the time, I did not have an autism diagnosis, and was in fact diagnosed with Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder, according to my psychiatrist). This diagnosis was used to invalidate and gaslight me throughout my entire hospital experience.

As many will know, the NHS here in the UK is terribly understaffed due to government cuts. This was no different on the psych ward. Between 5 and 8 members of staff were responsible for around 20 patients, all of whom were profoundly ill.

Many patients were violent, and little happened to them. When I did see restraint (both physical and chemical) it was used on a small woman who had already calmed down. It seemed to me that medication was a punishment in there, rather than the lifesaving treatment that I know it to be now.

I was having regular meltdowns, I tried to elope several times. I was threatened with police and told that I was attention seeking and “seeking” specific diagnosis. There answer was to pump me full of antupsychotics. By the time I was discharged, I could barely string a coherent sentence together.

This practice was known as chemical restraint, and it was used to make patients easier to cope with when the staff were so terribly outnumbered.

I knew my diagnosis was wrong, and my psychosis continued long after I was discharged.

Being an Autistic in a psychiatric hospital was honestly, deeply traumatising. I was invalidated and gaslit at every turn, I was bullied by other patients, I was treated as a nuisance. I would like to think that a formal diagnosis would have resulted in at least some understanding, but sadly that didn’t happen until the following November.

Inpatient facilities need to look really carefully at how they recognise and engage with autistic patients. The experience was so unpleasant for me, but I wasn’t safe anywhere else, so I felt trapped.

It was the longest month of my life, and thankfully I now have an advanced directive in place stating I should only be hospitalised if nothing else is working.

Psychiatric hospital is necessary for some, but in this country, it has a long way to come in how it handles autistic patients.

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