Part 29: Price Tag

Hello, and welcome back to The Autistic Writer. I’ve been working hard on the second draft of my novel, Aberrations, this week. I keep a little tracker of my progress on a spreadsheet, and I love the feeling when I see those squares filling up. I’ve just gone past chapter 30, and it feels good. In this week’s blog, I want to draw some parallels regarding how on the one hand, writers, and on the other hand, autistic people and their families, can be cynically parted from their money.

At the end of chapter 29 of Aberrations, one of the central characters makes an interesting discovery, and the chapter ends like this:

Conor is right. The subject of money and how it makes people behave is fascinating. There is a well-known English proverb, A fool and his money are soon parted (generally attributed to Dr John Bridges, in the 16th century). While it seems obvious that a foolish person will tend to lose money, the proverb also subtly encodes another meaning; that someone who is easily parted from their money in return for something of little value must necessarily be a fool. But this might be a bit harsh on people who have been ripped off, duped, or otherwise taken in. Sometimes, people are unfairly parted from their money because of scams perpetrated by highly-skilled, believable conmen. And sometimes, perhaps more insidiously, perfectly legal enterprises financially exploit people by appealing to desire, ambition, and simple human kindness; core human traits that most of us would be happy to be told we possess or enjoy.

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Before talking about cynical money-making in the autism industry, I’m going to talk a bit about the aspiring writers industry.

When I was first starting out as a writer, I was on a steep learning curve. Self-conscious about the amount of school I had missed as a child (as explained in a previous blog post; truant due to autistic anxiety), and having something of an intellectual inferiority complex, I became a sponge, reading everything I could get my hands on. But when it came to learning how to be a good writer, reading didn’t feel like enough. I needed coaching and instruction. The problem was, I didn’t have a mentor, and I didn’t know any writers. So, like many aspiring writers (a term I dislike, but hey, people tend to know what I mean by it), I turned to reading things that appeared to be designed to coach and instruct, and I started taking courses. I went to college to take an A-level in English Language. I signed up to The Writers Bureau. I took a degree in literature with The Open University. I joined online writers forums. I joined a local writers’ group in Sheffield (which folded pretty quickly). I also started buying glossy monthly magazines aimed at writers. All these activities cost money, and some of them were better value than others. Let me show you a quick list explaining how I attach value for money to the various learnings I pursued:

• A-Level English Language: Ultimately, all I got from this was a boost to my self-confidence, due to positive feedback from the tutors and the other students. I got a B result, which infuriated me because I was A material. In the exam, there was a compulsory question on a subject we had not covered in class. Everyone who took the exam failed that question. The tutors later apologised, saying they didn’t know the subject would be covered. Taking this kind of class is only something I would recommend for someone who, like me, missed out on parts of school education. The overall relevance to my development as a writer is slight. Value for money: 3/10.
• The Writers Bureau: Let’s be straight; The Writers’ Bureau will not turn you into a literary genius. Their course is not about literature. What is does well is to take a pragmatic, no-nonsense approach to writing with the intention of equipping people to make a living from the craft. In some senses, you could argue it risks breeding hacks. However, I have fond feelings toward the course, because its brass tacks approach to the planning of writing a novel is exactly what a beginner needs. My novel-writing process owes a lot to the beautifully simple method described on the course. I did not completed the studies, as some aspects of the course didn’t interest me at all – journalism, travel writing, etc – even though I paid for the whole product. Still, I think it was worth it. Value for money: 6/10.
• Honours Degree in Literature, The Open University: I loved the studying I did with The Open University. I learned huge amounts, and I have very warm feelings about it. As part of the degree, I took a module in creative writing, which I nailed as I was already progressing well as a writer at that point, so it was great for boosting my marks. My overall general knowledge and self-confidence improved as a result of this degree, simply because of the huge breadth of learning. One of my modules was on philosophy, another on general humanities. But the parts that focused on serious literary study really opened my eyes, and helped me reach a new level in my writing. I would recommend the serious study of literature to anyone wanting to write; there’s only so much you can learn from taking creative writing courses. Having said all that, the course was expensive, and the various tutors I dealt with were not all of equal quality; I remember that at least one of them seemed to be doing the bare minimum he could to get by. I brought a huge amount of focus to my studies, completing the degree in three years while holding down a full-time management job and writing a novel, and I’m proud to say I got a first. Value for money: 7/10.
• Online writers forums: The ones I tried were all free. I can honestly say I learned nothing using any of these groups. Some of them seem to suffer from the problem of people reciprocating glowing reviews for glowing reviews. Apart from being dishonest, it’s difficult to see what this achieves when the only people reading on the site are other aspiring writers. I don’t use them any more, and view them as a waste of time. Value for money – N/A, but time was wasted.
• Writers’ Group: For a few weeks I attended a small group in Sheffield that met on Sunday evenings. There was a nominal weekly subscription, possibly one pound a week, I can’t quite remember. The experience of having to read my work aloud to people for them to critique was invaluable. I was working on the first draft of my first novel, Blood Brothers, at the time, and the critical feedback I received here helped me enormously. Sadly, the group folded. Sometime later, I tried attending another group that met at a library, midweek. The people in that group were nice, but were probably a bit too nice. It was all a bit of lighthearted fun, and the criticism was weak and polite. That’s okay for some people, but I was taking my writing a bit more seriously than that. I’d recommend joining a writing group, but you have to make sure it’s the right group, with the right approach for your needs. Value for money (first group): 10/10.
• Writing Magazines: You’ll have seen these on the magazine shelves at the supermarket; glossy covers, often with a photo of a famous author on the cover, with blurbs promising insightful interviews with best-selling authors, great writing “tips”, and inspirational stories of amateurs landing pro publishing contracts. These magazines are not cheap, usually around half the price of a good, chunky paperback book. If you buy them every week, fortnight or month, that can really add up. Furthermore, when you take out the lightweight editorial columns, the large photos, the writing quotes that can be easily found on google, and the pages and pages of adverts, the actual content is minimal, and much of that is more or less regularly recycled. The real purpose of these magazines is to host advertising, much of which is for expensive writing courses, even more expensive writers’ “retreats”, and self-published books by other aspiring writers. (Nothing wrong with self-published books – I made the decision to go down that route myself – I just find it a little bit ouroboros when these books self-published by aspiring writers are advertised in the classifieds of a magazine for aspiring writers.) There is no useful content in a years-worth of these magazines that cannot be found in a single good book on the craft of writing. The magazines form part of an industry that targets aspiring writers, and tries to convince them to spend more and more money on courses, to buy more of this, and subscribe to more of that. They talk about writing communities, drawing in the unwary with vague hints of belonging. Many of the advertised courses and retreats, and so on, strike me as dubious. I mean, if the courses were being written and presented by the top, best-selling authors in the world, that would be something. But do you really want to spend a small fortune on a course run by someone who once had a poem printed in a newspaper; a course that just regurgitates advice you can pull for free from google; a course that gets you to read out your work to other aspirationals, in a writers’ group format that you could get at an actual writers’ group for just a couple of quid? Value for money: 0/10.

A truth that I discovered in my learning is that there is no new advice about writing; there is no new knowledge being developed; nothing new to learn. The knowledge is already out there, and it is old. In terms of writing fiction, Aristotle, 384-322 BC, pretty much covered it all in a very short book called The Poetics. Yes, people have added detail, and the study of literature, which is very different from the study of creative writing, has provided huge and vital insights for writers. But it’s pretty much all been done, now. Intriguingly, this has led me to conclude that reading, which I had once thought would not be enough to support my development as a writer, probably could have been enough if I had read the right things. In the end, I’ve spent a small fortune on learning about writing, much of which I need not have done. In fact, for a tiny fraction of that cost, it’s possible to buy a few excellent books on the subject of writing fiction that will give any aspiring writer a superb grounding in the craft. (For anyone interested, I’ll list those books as an appendix at the end of this post).

I would say to any aspiring writer; beware of anyone asking you to part with money to advance your craft. The industry built around this is huge, and that’s before we even get onto vanity publishers, who in my opinion are just parasites. If you publish your writing, you expect to be paid for it. Vanity publishers expect you to pay them. There are two ways to spot a vanity publisher: 1: If they ask you for any money at all, under any circumstances at all, they are a vanity publisher. 2: Any publisher whose website or documents proudly proclaim something like, We are not vanity publishers, is definitely a vanity publisher – no reputable publisher would contemplate using those words.

The aspiring writer industry will try to appeal to your ambition, to your hopes and desires, to your self-image, to your need to belong to a like-minded community, and to your naivety. But what they want is your money.

So, what does this have to do with autism?

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People who discover they or their family members are autistic also tend to go on a steep learning curve. The internet age being what it is, a google search is the starting place for many people. Depending on exactly what they key into the search engine, at some point, this loathsome result will make an unsightly appearance:

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Autism Speaks is a hate group masquerading as an autism charity. Autism Speaks is committed to eliminating autism, which means eliminating autistic people. They have advocated eugenics, and have previously come out in support of the vile myth that vaccines cause autism. Of course, if you were new to learning about autism, you wouldn’t know this. You might click on the link for Autism Speaks, and see all kinds of bullshit which at first glance might seem quite benign, such as this:

For the time being, I’m not focusing on the evil nature of this grotesque organisation and the vile aims it really promotes (believe me, “timely interventions” is a euphemism), because what I’m talking about today, remember, is money. In the financial year 2019-2020, Autism Speaks raked in just shy of $95 million. They spent over $22 million on salaries. Top earners in the organisation can earn well over half a million dollars annually. In the same year, they spent over $35 million on media, and over $3 million on legal fees. This is a charity funded by donations, some of it from large businesses that think they are helping autistic people, and it is paying its top employees very handsomely indeed. And they want your money – donations, fundraising, whatever – they just want your money:

Those “timely interventions” Autism Speaks mentions on their website about include a “therapy” called applied behavioural analysis (ABA)… a term guaranteed to upset most autistic people. I’m not going to go into detail about ABA today as I’ve covered it elsewhere on the blog. Suffice it to say, this so-called “therapy” has traumatised many autistic people. Getting ABA costs money, and it is often administered by “therapists” who have only the barest, minimal training on ABA, and sometimes have no other training or experience of working with autistic people. But nevertheless, these therapists make a living out of it. They can do that because autism is big business. If you are a parent of a newly diagnosed autistic child, and you have previously had little or no awareness of autism, there is a good chance you will be sucked in by Autism Speaks, and ABA. You will probably think you are doing the best you can for your child. What is actually happening is that you are being exploited. Your love and compassion for your child, not to mention the fear that might accompany ignorance of autism, is being mined in order to get you to part with cash.

As you’ve seen from the above images, Autism Speaks uses the jigsaw puzzle piece as its identifying logo. The puzzle piece has become a symbol for autism worldwide. So it might surprise you to learn that the vast majority of autistic people detest it. When I was first diagnosed as autistic, I spent some time trying to come up with a logo for my planned blog, and I designed a variant on the puzzle piece. Pretty quickly, however, I learned about the awful connotations of the puzzle piece, and so I dropped it. The rejection of the puzzle piece by autistic people is only partly based on its association with the loathsome Autism Speaks. Another reason is that autistic people do not want to be seen as “puzzles” to be solved. We are individual human beings, not something to relegated to a symbol depicting us as a problem to be solved.

Nevertheless, the ubiquity of the puzzle piece persists, and a big reason for that is, you guessed it… money! If you go to Amazon, and key “autism” into the search box, you can start to get an idea of how huge the autism sales industry is. On my browser, it brought up 20 pages, and if you trawl through them, you’re going to see a hell of a lot of puzzle piece symbols! Bizarre, isn’t it, when you consider how hated it is by most autistic people? So, who is buying these products with such an unhelpful and largely despised symbol? Apart from a tiny minority of autistic people who accept it, my guess is that it’s the uninformed people who buy this stuff; perhaps misguided relatives of newly-diagnosed children, and so on; people who mean well, but don’t know any better.

Many autistic people prefer the infinity symbol logo, like the one I’ve incorporated into my blog’s branding. And many of us also like the sunflowers lanyards, which show solidarity with all invisible disabilities. But be warned, even if you try to buy something with a more universally accepted symbol, you could still get ripped-off. I’m going to use Amazon as an example again because they are so dominant in the market, but they are not the only culprits by far:

You see, you can buy the sunflower lanyards from Amazon and many other places, but UK supermarket Morrisons was giving them away for free, and on their website, they make their position on this issue very clear:

Have a think about this: Morrisons are a retailer, and like all retailers, they live on profit, and yet even they felt it necessary to point out the cynical commercialisation of the lanyards by other parties. Autism, I repeat, is big business. Couple the autism puzzle piece merchandise industry with the so-called autism therapeutics and treatment industry , which is itself worth billions worldwide, and you can see the scale of the problem. (Autism treatment is pretty much an oxymoron, as autism is not an illness, so this industry is particularly cynical.)

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Here’s how I understand the situation:

Autism Speaks is a malicious organisation whose explicit aim is to rid the world of autism, and make a lot of money while they’re at it by posing as allies of autism. You couldn’t make this up.

ABA is harmful to autistic people, and is only perpetuated because the uninformed believe it is helpful; meanwhile, people are making a living from using this “therapy” to abuse and traumatise autistic kids. It’s amazing how money helps people justify themselves.

The whole autism therapeutics and treatment industry makes its huge profits on the back of perpetuating the lie that autism is an illness.

The autism puzzle piece merchandise industry just churns it out, one puzzle piece after another, with no thought to what it means, or how it actually makes autistic people feel. Because money.

Living as an autistic person in a world made by and for neurotypical people is hard work. It is exhausting and troubling. Often, trying to live in that world disables us. And yet an uncaring, cynical, worldwide money-making industry is churning billions every year by milking misguided and harmful sympathy for us.

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Well, that’s all for this week. Hopefully, if you’ve considered spending money on some of the things I’ve talked about above, you can now stay that little bit wealthier, or maybe just be a little more discerning from now on. As always, I welcome your thoughts and comments on what I’ve had to say, either here or on Twitter or Facebook. Until next time, stay safe.

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Hey, if you really have some money to spend, you could consider supporting this blog (which I will never put behind a paywall), and buy me a coffee by clicking the logo below, and following the instructions.

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Why do I write this blog?

When I was first diagnosed as autistic, at the age of 54, I quickly learned that there was a serious shortage of information and resource for newly-diagnosed adults.  It’s my aim to inform about autism and autism-related issues as I learn.  I will never hide what I do behind a paywall.  If you like what you read and want to chip in, feel free to “buy me a coffee” by clicking the icon above.

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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Appendix: Genuinely worthwhile books for writers.

For all the rip-off rubbish that is out there trying to fleece aspiring writers, there are some really good books about the craft, too. The books below are ones that I have personally read and used. I still rely on them, and give them my wholehearted recommendation. Clicking any of the images takes you to the Amazon listing for the book.