Part 46: What the Health?!

Hello and welcome back to The Autistic Writer. I hope everyone’s as healthy as can be. For my English readers; try to stay calm. Not long now. The omens are good. For my Italian readers; may the best team win, and Italy be the runners up! Now we’ve got that out of the way, let’s get back to the blog. For now, I’m managing to type with two hands. Despite wrenching my troublesome shoulder Thursday night, through my own clumsiness, the pain has settled down a little bit. I’m due for my painkilling injections on Tuesday, and I cannot wait, although a part of me has started to worry about what side-effects will come with the treatment. But anyway, the point is, I can type better than last week, so I expect to have a more normal-length blog for you today.

Content Warning: This week’s blog mentions depression and suicide.



Let me tell you a little story. Years ago, I worked for a huge, well-known retail company, in a management role. In my early days as a junior manager, something happened that has always stuck with me as one of those odd little anecdotes I relate every now and again. There was a department close to mine on which a number of young men worked, and they were quite the tight little group. One day, I found out that the whole lot of them had been taken through a serious disciplinary process. Something bad had happened. Confidentiality in those days (the late ’80s) was a joke, and it soon got out what had happened. A document had been found on the department. It was, shall we say, a planning document. A rota, if you will. Specifically, this document was planning out future dates the young men had agreed between themselves that they would take off sick. They wanted to make sure they maxed out their sick pay, treating their sickness allowance as a bit of extra holiday. I wish I could say it was a joke, but it was in fact the real deal.

Employers tend to see sick leave from employees as a problem, and so it is often managed very strictly indeed. I have known employers that have truly draconian approaches to staff sickness. It has always struck me as a crazy approach, to be so tough on sick leave. If there is a contractual agreement for a certain amount of sick pay to be paid, then once that sick pay is used up, the employee doesn’t get any more – no need to get draconian about it; everyone knows the terms up front. Of course, faking sickness to get time away from work is a different matter. It is lying, and it casts doubt on the trustworthiness of the employee. Employers will point to instances of fake sickness as the reasons for their draconian absence policies, but it still doesn’t stack up. For me, if someone fakes sickness to get time off work, and there are no mitigating circumstances, they should be subject to disciplinary processes. But really, in my thirty years experience of management, I would say that cases of some genuinely falsifying sickness are pretty rare. I need to make myself clear on this: I don’t count someone who is suffering from depression but who calls in sick citing, say, flu, as falsifying sickness. There are many pressures that make people misrepresent their sickness to an employer, and it shouldn’t be treated as falsification; if you are unwell, you are unwell, regardless of what label you apply to it. I’ve known people talk about throwing a sickie, when you can tell they are struggling with some mental or emotional issue. They don’t see that as illness, but it is. The vast majority of people will not take sick leave from work when they are completely healthy. Rare escapades like those of the crew who drew up their sickness rota really don’t help matters, though. Speaking as a somewhat seasoned ex-manager, it is my experience that employees want to do a good job, even when circumstances at work might be pissing them off. In all my years, I only ever encountered one employee who was deliberately trying to do a bad job. He was doing everything he could to push the company to sack him, because he thought it was funny. Due to the utterly incompetent senior management in that location, the disciplinary action didn’t get followed through, and much to this young man’s bemusement, he continued to keep his job. But I digress.

Back to the retail store when those guys were planning fake sickness. A year or so after their ignominy, I suffered my first ever workplace mental health crisis. I’ve mentioned this previously on the blog. It was an extremely dark time for me, many, many years before I discovered I’m autistic. Some things happened, and I melted down dramatically, and it led to me making an attempt on my own life. I was off work for some time after, in a serious pit of depression. When I came back to work, I remember a fellow manager commented to me that depression was a good way to get a bit of extra holiday off work. Yes, you read that right. Furthermore, that period of absence put me on the absence disciplinary pathway at work. “Further absences could lead to disciplinary action”. How is this a way to manage people? What kind of approach to health is this? It happened a long time ago, but nothing has changed in almost all workplaces in the UK.

Talking about health, I will change direction slightly, and say this: I have only ever come across one medication that has not come with nasty side-effects, and that is the humble, ubiquitous, paracetamol. One popular medicine I took for many years for one problem gave horrible side-effects that devastated my long-term health. The problem was, I didn’t know it was a side-effect I was struggling with. Me and various doctors just assumed it was a completely different, unrelated issue. It was pure luck that I ever found out the truth at all. I stopped taking that medicine, and my health improved dramatically. Even with all this in mind, I am not in any way anti-medicine, or anti-pharma. Medical science is a wonder of our culture. The booming population of the planet has a lot to do with our progress in medicine and healthcare. It’s the reason we get to see our parents and grandparents grow old. My relationship with my mother blossomed in the final years of her life, when I developed the maturity to really start to understand and appreciate what she had done for me. I’m so happy we got those years together, when in previous generations she would not have made it to the age she finally achieved. But you do have to be careful about side-effects from drugs, as I recently found out yet again. I’d been taking co-codamol for my shoulder pain. Codeine, I have discovered, does not agree with me. The side-effects crept up on me slowly, and included disturbed sleep, headaches, nausea, and mental fog. When I realised what was happening, I cut them off straight away. This led to an increase in pain, but as it wasn’t quite as bad as when the shoulder problem kicked off, I felt it was a trade I was willing to make.

There is a certain type of person who, when they hear stories like mine, spout opinions along the lines of, “We don’t need all these medicines and drugs. My grandad refused to even speak to a doctor, never spent a day in hospital. He smoked fifty a day, and lived to be a hundred-and-six!” This is, of course, a prime example of survivorship bias. Someone might well live their life like that, but it’s hardly great health advice when you consider, say, how many smokers actually die young from horrible smoking-related cancer. My take on it all is; medicines do great good, but you must pay attention to side-effects. At the same time, do not refuse medicines based on vague, unresearched fears of side-effects and big pharma. In other words, when it comes to your health, engage your brain.

One major use of meds is for managing pain. I’ve had plenty of experience of this over the last eight months or so, having been in pretty much constant pain during that period. It is widely recognised that autistic people experience pain differently from other people. Some of us are more sensitive to pain, some of us less so, according to the prevailing wisdom. I wonder if it’s a little more complex than that. Personally, I’ve often been told that I have a low pain threshold – in other words, I’m extra sensitive to pain. That’s probably correct, and yet I’ve also had people tell me that they’ve been amazed at how I’ve continued to work when I’ve obviously been in severe pain. This was the case last December as my back pain developed. I am very aware of pain, and I feel it intensely, but I’m also very capable of pushing myself through it. Even very severe pain won’t necessarily stop me. Last December, I needed assistance getting out of bed, getting dressed, and so on. But I still carried on going to work, until my body said, nope, and I ended up being admitted to hospital, to experience the dubious joys of morphine. This is why I feel my experience of pain is more complex than being hyper- or hypo-sensitive; It’s a strange mix.

Health is, as I have discussed in previous blogs, a massive worldwide industry, and there is a vast money-spinning health niche around autism. There are many so-called co-morbid (ugh, I prefer the term co-occurring) health issues common in autistic people. The health industry aimed at treating these is keen to try to position certain so-called treatments, therapies and interventions, as treatments for autism, which is of course very misleading, because we know that autism isn’t an illness, and cannot be treated. Two of the most common and troubling co-occurring conditions for autistic people are depression and anxiety. The two are related, but different, and each is terrible in its own way. I specifically want to talk about depression for a moment. Depression is not exclusive to autistic people. It’s one of those illnesses that crosses the borders between neurodivergent and neurotypical people, giving us all some commonality. If you talk to any reasonable person about depression, they will understand that it is possible to be depressed without suffering from the illness, depression. Changing emotional states are part of human experience, with low moods coming and going. Where the dividing line lies between feeling a bit down and being actually depressed, and the next line beyond which lies clinical depression, is personal to the individual. If you were to ask what causes depression, the scientific answer would describe the condition in terms of brain chemistry. But there are different levels of explanation, and for many people, talk about chemistry, neurotransmitters, and so on, doesn’t really mean a great deal. Another level of explanation will list life events as possible causes of depression, such as losing a loved one, becoming unemployed, the break-up of a long-term relationship, etc. Often (but not always) in cases like this, recovery happens more or less naturally, sometimes with treatment required. People work through their grief and disappointment, recover, and go on with their lives. But there is another type of depression. This can seem to have no obvious cause. It is deep, and dark, and changes the sufferer’s life permanently. Clinical depression is such that, very often, the person feels they cannot go on or cope with normal daily life. This might result in the person not caring for themselves (and their dependents) in basic ways, self-harming, or making an attempt to end their own life. It is pretty much impossible to learn to live with such depression, much less attempt recovery, without some help and treatment. We are talking about a very serious illness, here. And like I said, most reasonable people would accept there is a qualitative difference between this illness, and feeling the transient type of depression that naturally comes and goes in life. Let me be clear; when I say transient depression, I’m not talking about feeling a bit down; I’m talking about depression that is still an illness, and is still horrible, but is not in the same ballpark as deep clinical depression. This transient depression is recoverable, even if sometimes it takes a while. With all that in mind, then, it is frustrating to find that some people use the term, depression, as if all types of depression are the same, and spread some pretty unhelpful ideas as a result. And I came across some really unhelpful ideas being spouted on Twitter this week; ideas that were based on such profoundly willful stupidity, that it infuriated me…

Some guy tweeted that you can rid yourself of depression with a few simple actions he bullet-pointed, including things like going to the gym, and not partaking of sugar. It was the kind of lightweight, think-positive bullshit that abounds from people of the fringes of the health industry who have no real idea what depression can be like. Then another guy replied to the tweet, saying that he’d managed to recover from depression without meds. There were problems with these tweets. Firstly, they suggest that people who don’t follow the bullet point steps have only themselves to blame for their depression – but it totally misses the point that a clinically depressed person is often prevented from carrying out basic activities of self-care, and will sometimes do the opposite, precisely because of the depressive illness. Secondly, it wrongfully pushes the idea that taking meds to deal with depression is somehow a cop-out. I got involved with a Twitter thread about this, which unfortunately led to a third party tweeting an insulting image directed at me (see below). The whole thread deteriorated into nonsense because of this person, who really didn’t have the skills to succeed in the debate he was trying to win. I’m not going to share the whole thread but some highlights (or lowlights, more accurately) are below. The thing to take from it is that basically telling a depressed person to pull themselves together and not be depressed is about as willfully stupid as it can get, and helps no one.

Okay, let’s move on, because this week saw a news report related to mental health, and a subject extremely close to the hearts of autistic people. In the USA, the FDA (Food and Drug Administration) had imposed a ban on the use of electric shock devices on mentally disabled people, to cheers from all around the autistic community. Electric shocks have been used in the past as “punishment” (read, torture) for autistic children who did not comply in ABA (Applied Behavioural Analysis). These days, ABA torture is more subtle, with electric shocks and physical beatings not deployed, so we’re told. But electroconvulsive “therapy” is still in use in places, not to mention the use of the electric shock devices the FDA ban was aimed at. It is a scandal. So, autistic people and others were happy with the action taken by the FDA. However, the ban was overturned by the Federal Appeals Court in Washington, DC. It is difficult to understand how this ruling can be arrived at. The effect is that the infamous Judge Rotenberg “Educational” Center in Massachusetts will be able to continue torturing its residents, who are mainly children and adults with mental health disabilities. This has been met with understandable horror by the autistic community. Awful reports have emerged from the Judge Rotenberg Center, of residents being tortured with electric shock devices many dozens of times inside a few hours, for minor infractions such as refusing to remove a jacket, or in one case, as a result of prank calls made to the center. There is a long fight ahead of us to bring about understanding, acceptance and equality for anyone with mental health issues. We need to stand together on this, and continue to shout until our voices are heard.

If you’re struggling with depression, or feel hopeless, don’t suffer in silence. The following links might be of some help:

That’s all for this week. It’s been good having you here again. Until next time, take care of yourselves.

Darren


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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