Part 118: Why Even Care?


Hello, and welcome back to The Autistic Writer. I’m writing this on Saturday 17th December. We’re almost there, are you excited? I’m excited! Just a few more sleeps until… the shortest day of the year! Yes, December 21st is the first of the big three mental milestones I have to deal with at this time of year. Getting past the shortest day always feels like a hurdle overcome, for me. I don’t react well mentally and emotionally to the dark time of the year, and just knowing the days are (even if only gradually) going to get longer again, cheers me up. Also coming up on the rails are Christmas and New Year. For many years, Christmas has been a source of stress and distress for me. Last year was the most relaxing and stress-free Christmas I have ever had, spending time alone in my little flat. It was also a bit disappointing, as I had planned on spending Christmas Day with my son and his partner, but Covid ruined that. We’re going to try again this year, and if it all goes ahead, it promises to be a good time. New Year’s Eve can sometimes be a bit of a problem for me, emotionally. I’m a sucker for the markers of time passing, and New Year is always a biggie in terms of me taking stock of my life, and dwelling on regrets and failures. But we’re not there yet, so let me suddenly shift my focus to something else: Why should non-autistic people even care about autism?

One of the problems I have with writing about autism is getting the message out of the autistic and autism communities, and into the non-autistic world. Most of the people reading things like my blog already have some kind of interest in autism; many are actually autistic themselves. But most of the problems autistic people experience (and there are many) stem from a lack of understanding and acceptance by the non-autistic world. Getting people who don’t believe autism has any relevance to them to read about autism is difficult. And even if you can persuade a non-autistic person to ingest some information about autism, there is a good chance they will think, So what? It’s not relevant to me. In this blog, I want to suggest a way of getting non-autistic people to understand why they should be interested. Some of what I’m about to say might be upsetting for some readers. I make no apology for that; sometimes hard facts are necessary to get the message across. I would encourage my fellow autistic folk reading this to use the following points to get non-autistic people interested, if they feel it appropriate.

For non-autistic people to get why autism is relevant to them, they have to understand two simple ideas, and put those ideas together. I’m going to discuss both ideas below. The ideas are:

  1. Someone you care about is autistic.
  2. Those autistic people you care about are going to suffer.

Before I go on to discuss these ideas, a little disclaimer is in order. This is a blog article, not an academic paper. While I sometimes include links to other sources of information, it’s not my aim here to cite peer-reviewed studies, and so on. If you don’t believe the things I say here, by all means, go and do your own research. You don’t have to trust me if you don’t want to. You will definitely find some information that might contradict what I’m saying (that’s the post-truth world we live in), but you’ll also find a lot that backs me up. The rest is up to your willingness to learn, and your conscience. Let’s get started…

Idea 1: Someone you care about is autistic.

Okay, think about the people around you. Family. Friends. Teachers. Co-workers. Then consider your favourite celebrities; actors, musicians, authors, artists, whatever. What about people that you don’t directly know or know about, but who still generate an emotional resonance in you; this could be the homeless person you occasionally buy a coffee for, the delivery person who you always say hello to, or whatever. Think about all the people you care about, the people that you are interested in, the people that matter to you. Think about the people you would not want anything bad to happen to. When you go into it, this list pretty much always ends up being longer than you’d first think. Now here is the thing: Some of them are autistic. How can I possibly know this? Well, I can just trot out some handy statistics, for one thing. Sure, it’s possible that someone reading this blog doesn’t have an autistic person in any of their circles, but honestly, I believe that will be vanishingly rare. Let me talk about those statistics for a moment…

The most common statistic you will find about the incidence of autism if you do some casual googling is 1 in 100. For a long time, it was held as a truth that 1% of the population is autistic. However, another more recent stat you will find is that 1 in 44 children are currently being identified as autistic. Various sources give slightly different figures, and the problem with googling this stuff is knowing which sources are reliable, and what social and financial agendas those sources have when quoting figures ( a bigger and more problematic issue than you might think). The 1 in 44 figure refers to school children in the UK, and is probably among the more reliable figures out there, but the true incidence of autism, globally, is probably a bit higher. Why do I claim this? Well, we often forget that the study of autism is very new. While a Western view of autism tends to credit Hans Asperger and Leo Kanner with the earliest formal study of autism, earlier work appears to have been done by a Soviet psychiatrist, Grunya Sukhareva, in 1925. To put things in perspective, that was the year in which my mother was born. Since then, the study of autism has been beset by incompetence, cruelty and fraud (backtrack through my previous blog posts to get a flavour of this if you’re not already familiar). Currently, autism – or more correctly, the fear of autism – drives a multi-billion dollar worldwide industry that creates a disturbing financial conflict of interest through the community of autism researchers, charities, psychiatrists, and psychologists. This horrendous state of affairs is why many autistic people are coming to the conclusion that the best and most reliable experts on autism are autistic people themselves. And we autistic people have some important points to make about the statistics I mentioned…

Firstly, gender matters. For a long time, it was thought by the community of autism professionals (psychiatrists, psychologists, etc) that only boys were autistic. This is clearly wrong, but still, many females face a battle to be taken seriously when pursuing autism identification. All too often, females are misdiagnosed with disorders, a common one being bipolar disorder for example, when they are actually autistic. The situation is probably worse for anyone not conforming to standard gender protocols; non-binary people, trans people, and so on. Secondly, race matters. Racism exists throughout all levels and corners of our society, and getting formally identified as autistic if you’re not white is all too often a problem. Culture also matters. For example, there are some cultures in which children are discouraged from making eye contact with adults. Considering that the eye-contact issue is frequent in autistic children, this is potentially a missed tell. The incompetence and ignorance of some medical and mental health professionals also matters. Spend some time in autistic spaces on social media, and you will find countless stories of people diagnosed as autistic in adulthood, after spending a lifetime being misdiagnosed or incompletely diagnosed with depression, anxiety, social anxiety, borderline personality disorder, bipolar, etc, etc, etc. The point here is that autism has been woefully underdiagnosed, and even with the 1 in 44 children being identified in UK schools, there is still a way to go before the professionals who are on the front line of identifying autism (teachers, teaching assistants, GPs, psychologists and psychiatrists) are up to speed. Please note that when I refer to the incompetence and ignorance of professionals, I am not using those terms in a pejorative sense, but simply stating that too many of these professionals simply don’t know enough about autism to do what is required.

I’m not able to put an exact figure on what the true incidence of autism is worldwide, but all the evidence points to it being greater than 1 in 44. We autistic people remain a tiny social minority, but there are enough of us that when any non-autistic person compiles a list of the people they care about, there will be some autistic people on that list, even if they haven’t yet been identified as autistic. And to those non-autistic people out there; the people I want to get this message out to, I have this to say: Some of you are autistic; you just don’t know it yet.

So, you non-autistic people… if someone you care about is autistic (or even if you are starting to wonder if you might be autistic yourself), there still might be an element of So what? in your thoughts. Well, that brings us to the second idea…

Idea 2: Those autistic people you care about are going to suffer.

If we care about someone, we don’t want them to suffer, do we? Actually, if you’re a half-decent human being, you don’t really want anyone to suffer. In fact, if you’re autistic, you are likely to be just as upset by a stranger suffering as you would be by someone close to you being in distress (I’ve blogged about this before). But if you’re a non-autistic person, it’s likely that you are more affected by the suffering of people you care about (friends, family, your favourite Love Island contestant, or whatever). Well, there are some things about autistic people you need to know, and some of these things might upset you… particularly if the autistic person you care about is your child, or another family member, or your spouse/partner. I’m not going to sugarcoat it: We autistic people tend to die young, and the reasons why are horrific.

The average life expectancy for the general population depends on a number of factors, including when you were born. Without wanting to get bogged down in too much detail (you can do that at the website for the office for national statistics), it’s reasonably accurate to say current life expectancy for the general population in the UK is around the 80 to 81 years mark. This is not the case for autistic people, however. Depending on which set of statistics you look at, it’s going to be around 54 to 59 years of age. That’s a hell of a difference. At the time of writing, I’m 57 years old, so I’m probably on borrowed time. If that mortality prospect for the autistic person you care about isn’t shocking enough, let’s look at why we die so young. It’s grim…

The three main killers of autistic people are: Epilepsy, heart disease, and suicide. Now, I should point out, epilepsy is not autism. Not all autistic people are epileptic, and not all epileptic people are autistic. But epilepsy is common in autistic people. Stress and anxiety can act as triggers for epileptic seizures. Heart disease is common in autistic people, and the reasons are not straightforward, but one thing worth mentioning is this: heart disease is linked to elevated levels of stress and anxiety. Now let’s think about suicide. Suicide is most commonly associated with depression, and depression is extremely common in autistic people. Depression goes hand-in-hand with stress and anxiety. Can you see a theme here? Most if not all autistic people deal with elevated levels of stress and anxiety, much more frequently than the general population. The causes are many, but major among them are sensory overload and social issues.

Sensory overload is the norm for autistic people. The non-autistic world we live in is chock-full of sensory pressures that seem normal to everyone else but cause distress to us. The result is that autistic people’s baseline stress level is significantly higher than that of non-autistic people. Simply put, what most autistic people consider to be their normal stress level would be experienced by a non-autistic person as being very highly stressed. Living like that takes a toll. It’s bad enough when you know you’re autistic and you know you are being bombarded with sensory triggers… but if you don’t yet know you’re autistic, and you don’t know what it is that’s making you feel the way you feel, it’s incredibly distressing.

Arguably more distressing than sensory overload is social distress. This is complex, and makes life difficult for autistic people. On the one hand, social situations that other people find completely normal can leave autistic people feeling highly distressed. On the other hand, the social interactions that non-autistic people enjoy naturally can feel like convoluted mysteries to us autistics, and we often find we pitch our behaviours in ways that non-autistic people don’t like. This is one reason why so many autistic people become socially isolated. As discussed in a previous blog, I asked a question of the autistic community online, and found that many of us feel lonely but still prefer to be alone than in social situations. This is an incredibly revealing mindset that indicates how unpleasant and distressing social situations are for us, if we would rather be lonely than experience them. I should make two clarifications here: Firstly, when I say social situations, I am not simply referring to socialising; workplaces, schools, the family home, these and more all constitute social situations. Secondly, again, if an autistic person has not yet found out they are autistic, the social difficulties they experience can be absolutely traumatising.

Autistic burnout is a thing. Living life as an autistic person in a non-autistic world wears us down. It is debilitating. The final outcome of it includes (but is not limited to) severe depression, stress, and anxiety – those words again that we link to the increased mortality of autistic people. In fact, autistic burnout is one of the main reasons people get diagnosed in adulthood, when their autism has been missed in earlier life. When an autistic person simply cannot take any more of the non-autistic world, and they break down, then if they are lucky, a smart GP or psychiatrist might spot autism. If not, that undiagnosed autistic person will have plenty of suffering ahead. But even once you’re identified as autistic, and even if you were identified as autistic in childhood, burnout seems inevitable in our current world. The severe depression, often accompanied by suicidal ideation, the constant anxiety and stress, the heart disease, and all the other stress-related illnesses that blight the autistic person’s life, are a living nightmare. If you are a non-autistic person, is this the life you want for the autistic person you care about? If not, what can you do to help?

Your first step is to listen to what autistic people are saying about their autism; this is where you will find the truth. Increasingly, there is a divergence between what autistic people are saying about our lived experience of being autistic, and what the establishment is trying to impose as autism theory. Remember what I said about the study of autism still being very new, and being troubled by incompetence and fraud, and the financial conflict of interest among professionals making a great living based on social fear of autism. Steer clear of all that bullshit, and listen to the truth as told by autistic people themselves. Learn, and understand, and accept us for the people we are. Try searching for #ActuallyAutistic and #AskingAutistics on social media, rather than just searching #autism, which tends to include too much misinformation. Many of us are trying hard to get our voices heard, and tell the truth about autism, so you won’t be short of material. Hell, ask me your questions, either by commenting on this blog, or finding me on social media.

One last piece of seasonal advice for those non-autistic people who have an autistic person they care about: Please make Christmas easy for us. Do you really need a lot of noise, or can you build in plenty of quiet time? Do your Christmas tree lights need to flash, or can you just have them on constant… or not at all? Do you really have to fill the festive period with one social event after another? If so, can you accept it in good grace if an autistic person wants to opt out? Do you have to try to force all kinds of festive food on everyone, or can you accept an autstic person just might not be able to deal with that, and let them eat what they can cope with? Best advice of all; just ask the autstic person to tell you what they need and what they’re going to have to avoid over Christmas, and then make it happen – this is what acceptance looks like.

The Autistic Writer will return on Sunday 8th January 2023. Until then, I wish you a peaceful and happy Christmas and New Year.

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, take care.

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.


One thought on “Part 118: Why Even Care?

  1. That is a great read, very useful. following your posts with enthusiasm. Keep it up, I am sure you are indeed making a difference. One thing I have learned as a blogger is that the majority of readers do not give feedback, good, bad or indifferent, be assured that you are reaching many more individuals than you might think. Best wishes for a great new year!

    Liked by 2 people

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