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Autistic people are dying early; medical perceptions of pain are contributing

I recently posted about Autistic people and the expression of pain. One thing that has become clear to me is that not only do we not have the same relationship with pain as non-Autistic people, people in the wider environment constantly invalidate that relationship because they don’t want to believe our lived experiences.

Original post on Twitter

There are a lot of aspects of Autistic life in which we don’t highlight the disparity in cultural competency amongst professionals. Unfortunately, healthcare is not a battle we cam choose to walk away from. Our lives literally depend on being taken seriously and treated respectfully. There are some troubling statistics around Autistic life expectancy and mortality. In my opinion, there is correlation, if not a causative relationship between medical mistreatment of Autistics and these harrowing statistics.

Of the statistics, I have seen life expectancies around the age of 36 to 39 years of age (see here and here) for Autistic people. I have also seen suggestions that we are 51% more likely to die in a given year than the general population. I don’t think I need to push the point much further. It is clear that we are not a demographic that necessarily has the best outcomes in life.

Our experience of pain is intimately linked with our sensory experience. In particular, interoceptive differences mean that we can have a completely different response to pain than our non-Autistic peers. Monotropic brains mean we might not be able to stop thinking about the little pains, but may not even notice something significant or life-changing.

The way we embody pain is different as well. Autistic people are known for having different physical expressions, and when you throw in the significant relationship between the Autistic community and the chronic pain community, we can see why an Autistic person may not appear to be in as much pain as they claim to be.

This doesn’t absolve medical professionals of their lack of understanding. When a person works in healthcare, they should be taking people seriously, regardless of whether an ailment presents in the way that is expected or not.

I posit that dismissive attitudes amongst medical professionals and medical gaslighting lead to further health complications from i jury and illness. To consider it another way, if doctors took us seriously, we would probably live longer and happier lives.

For those working in healthcare, I applaud the care you give to many, but there is so much not being done for Autistic people that it can not be ignored. Autistic people are dying every day from ailments that needn’t have been terminal. Next time someone tells you their experience, believe them.

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.

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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