Part 131: Fear And Loathing

White text on a black background.  The text reads: "We need to be heard." ~Amy

Hello, and welcome back to The Autistic Writer. I hope things are going well for you. Something has gone well for me: A little reminder popped up on my phone. Have a look…

Why have I been recording how long since I last had a drink? Am I an alcoholic? You decide…

I have some memories from so early in my childhood, that some people think I’m lying about them. But I’ve had these recollections verified by older people who were there. I have many clear memories from pre-school age, which is, apparently, unusual. One of these is of a social gathering in our family home one night. There were various people present, and I remember one man who lived a couple of streets from us who had a slightly unusual appearance and very long, greasy hair. He frightened me every time I saw him. There was a lot of booze at this house party, and an older family member who I will not identify here, decided it would be funny to spoon-feed me the foam from the top of a glass of beer. Everyone laughed as I pulled a face as the taste, but I kept on swallowing it. I then fell asleep on the sofa, to the sound of laughter. I would have been three years old at this time. Shocked? You should be. It was abuse.

The first time I got drunk, I would have been around ten years old, so it was 1975. Two of my friends and I cobbled together some money, and persuaded a local adult to buy us a bottle of port from the corner shop, on the pretence that it was a gift for a grown-up. We drank some of it in my bedroom, then my friends got scared, and went home. I drank some more. I then approached my mother, singing some silly song and waving around the half-empty bottle. She was absolutely horrified, and did her best to keep me safe while I sobered up. At the age of 13, I regularly bought cans of beer from another local off-licence, the owners of which knew full well I was drinking it myself. They sold to any kids. After all, we were their future regulars. At age 16, me and a friend would do a crawl of the local pubs every weekend, getting served pints, and playing pool. By 18, I was a pretty heavy drinker. By my mid-twenties, I guess you could say I was a hard drinker. This was all long before I knew I was autistic, but I found alcohol relaxed me so I could socialise without panicking. As an under-age drinker, I had also been seen as cool and rebellious, which was a mask I found useful.

In my mid-thirties, I started gaining a lot of weight, and I was drinking every single night. Sometimes, huge quantities. I was working, and functioning, but I just couldn’t relax without alcohol. I didn’t like being overweight, though. I knew the booze was a problem, and I was very aware at this point that I was using it as a crutch. This worried me. My father had been a hopeless alcoholic, and it pretty much ruined his life. I spent many years detesting my father, and some of that hate was justified. He did some bad things. I now understand that he was a deeply troubled man, and I’m certain he was autistic in a time when almost no one knew what autism was. His struggles to cope led him to use booze. But that didn’t justify all his behaviour. Anyway, I realised I didn’t want to be an alcoholic like my father, so I decided to cut back. But I found cutting down my alcohol intake really hard. I became aware that I was craving the booze, and this frightened me so much that I quit altogether, and went nearly five years without a drink. I got slim and fit.

After those five years, I believed that I couldn’t really have a drink problem, because once I’d made up my mind to stop, it was quite easy. But then, once I started drinking again, my booze intake gradually increased until I started to worry again. So I had another long dry spell, before telling myself once more I was fine.

As I’ve got older, I’ve struggled to keep the weight off. A lot of this has been due to physical health problems that scuppered my fitness regime for years. And once autistic burnout started kicking in, my mental health status made exercise less appealing for me. I’d been a fairly regular drinker of evening glasses of wine at home for the last few years. I don’t really socialise much at all now because, post-burnout, I don’t have the mental strength for it. A year or so ago, both my physical and mental heath were, shall we say, patchy. I had some good spells, some not so good. But I was drinking anything from one to three glasses of wine most evenings, which is not healthy. My weight was really becoming a problem again, and I knew I needed to change something. So I quit the booze again, as this was a quick and simple way to seriously reduce my calorie intake. At no point since then have I felt any craving for alcohol. There have been occasions when I fancied a glass of wine, but just asking myself if I was thirsty, and looking what else there might be to drink, dealt with that. I’ve never actually craved alcohol. I can be around another people drinking, and it doesn’t bother me in the slightest. Looking back, I can see that from my early teens, when I’ve used alcohol it has always been as a prop to help me relax and feel like I can fit in. But finding out I’m autistic has led me to understand I will never fit into this largely neurotypical world. The relaxing effect of alcohol is an illusion. It changes nothing. Will I ever again let alcohol pass my lips? I don’t know. Maybe, maybe not. But for the foreseeable future, I’m staying dry. I still want to lose weight and improve my health, and booze doesn’t help with that. Now for a change of subject… and it’s not pleasant.

So, we’ve had Autism Awareness Week, or as I have been known to call it, Patronise Autistic People Week. I’m not sure how to begin saying how I feel after this past week. It’s grim. The space bar entries you’re seeing between the sentences I’ve typed don’t reveal the time I’ve spent pausing, thinking how best to express how I feel. I’m going to skip the really distressing stuff for now – I’ll come to it shortly, bear with me. But first, let’s cover some minor annoyances…

Why are we still having to tell people that not everyone is “somewhere on the spectrum”? How can it be, in the age of mass media, the 21st century, an era in which the collected knowledge of humankind is available at the click of a button on your phone, why are people still getting this wrong? Why are people still talking about nonsense such as “mild” and “severe” autism? What is their excuse? Why is it that no matter how many hundreds of thousands of times autistic people post on social media that we don’t like the jigsaw piece, people and organisations still keep using that image to represent autism? Why aren’t they listening to us? What is it going to take for the world to listen to what autistic people are saying about autism? Why are so-called “therapists” still touting ABA as a therapy for autism when time and time again autistic people who have been through it are telling them, No, ABA harms us, it traumatises us? Autism acceptance week is a joke; a bad, nasty disrespectful joke that hits like a kick in the guts. The way autistic people are patronised, mocked, and ultimately dismissed is sickening. But having said all that, my complaints are minor, compared to the abuse, trauma, and terror being inflicted upon vulnerable autistic people in the UK in the name of care and treatment. This is the really distressing stuff I referred to; the revelations in Channel 4’s Dispatches documentary, Locked Away: Our Autism Scandal. I wouldn’t blame you if you didn’t want to read any further.

There was a time, just a few short years ago, when my autistic burnout, which had been slow-burning for a while, started to ignite in terrifying fashion. I couldn’t function. The mask I was holding up to the world had disintegrated, the real me was showing through the broken fragments, and that real me was in a bad place. My mental health was in the pits. There were times I simply couldn’t hold it together at all. And I remember one particular day when I got scared. I was struggling at work, and when some difficulties came up, I couldn’t handle it. I walked away from the job, with nothing else to go to. I felt like I was falling apart. And the thought crossed my mind, very clearly: What if I’m sectioned? What if I’m locked up? This thought filled me with dread. Watching Dispatches made me realise I had been right to be scared of that eventuality. Watching the documentary, I was transported back to those dark times in my life, before I found out I was autistic, when sometimes, it just felt like the end of everything. When the filmmaker behind the documentary, Richard Butchins, said in the introduction that he avoided mental health professionals when he went through his own mental health crisis, it would soon become clear why. If you haven’t watched the documentary yet, I suggest you do so – you can find it by clicking here. But be warned; it is harrowing.

For autistic people to be locked up in what is supposed to be a care environment, and find themselves subjected to beatings, threats, solitary confinement, sexual assault, and rape, just beggars belief. For a young autistic person to find her mental health deteriorating as a result of such incarceration and then be told that the answer to the problem is more incarceration is a violation of human rights worthy of Joseph Heller. But it’s not fiction; it’s real life and it’s fatal. Lauren, a young autistic person who entered a psychiatric hospital voluntarily but became trapped in the horrific system eventually took her own life as her only way out.

When I hear that a psychiatric hospital in which autistic patients have been abused in the most terrifying ways has been put into special measures, I shake my head in disbelief. Putting such an establishment in special measures basically means trusting them to behave better. This is not acceptable to any reasonable human being. What we need to happen in these circumstances is an immediate police investigation, charges, and convictions.

Even when someone caught up in this terror manages to be discharged, the pain doesn’t end. What are you supposed to do if you’ve lost your home while you’re locked up, and on release, your mental health support plan is a hash of outright lies, as Shaun found?

Would you now like me to wax lyrical about the problems autistic people are facing, and perhaps offer some poignant insight? This isn’t the place for that kind of writing. I don’t want to use this misery to try to be smart. There’s nothing smart about saying this is wrong. Not just wrong, but outright evil. A modern scandal that shames our whole society. I want to see convictions for the people behind the abuse and horror.

My heart goes out to Amy, Danielle, Shaun, and also to Lauren’s grieving mum, and the countless unnamed others caught in the same net.

I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.

That’s all for this week. Until next time, I want to ask all autistic people out there to look after each other. We simply can’t rely on anyone else.

Darren

You can find The Autistic Writer on all your favourite social media channels


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.


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