Hello, and welcome back to The Autistic Writer. I hope you are all well. The highlight of my week has been listening to the absolutely brilliant audiobook of Pete Wharmby’s Untypical. Wow! What a fantastic book! This is the type of book that should be compulsory reading for teachers and employers. It should, in fact, be read by everyone. Don’t look shocked – I really do mean everyone. As I explained in a previous blog post, everyone knows and cares about someone who is autistic, whether they are aware of it or not. Everyone, autistic or not, has an impact on the life of someone who is autistic, and all too often those impacts are negative. Pete Wharmby explains in compelling and coherent fashion the truth about the autistic experience, the barriers we face, and what should be done about it. If you’re not autistic and you only ever read one book about autism, make it this one. If you are autistic, you can read it too. Be prepared to find some of the content having a deeply emotional effect on you, but definitely share it with the neurotypical people in your circle. I listened to the audiobook version, which is narrated by Pete himself, and he does a terrific job of it.
There has been more high-profile autism-related television viewing here in the UK, with an episode of Channel 4’s Dispatches programme. I haven’t watched it yet; I simply couldn’t face it, based on what had been reported on the subject matter. When I can bring myself to watch it, I’ll report on it in this blog.
But now, let’s talk about something else. Let’s talk about lots of little punches in the face…
Let me give you an imaginary situation, and then put yourself in it. Ready? You go into a tall building, an office block for example, and you need to get to an upper floor. Unfortunately, the only elevator has a big OUT OF ORDER sign on it. Sighing, you eye the stairwell… and there you see a person on crutches. This person seems to have been in an accident, with both legs heavily plastered. She’s on her own, looking forlornly at the useless elevator, and then looking at the stairs and wondering how to tackle them. The thing is, she’s blocking the stairs, and you need to get where you’re going. So, my question to you is, in this situation, would you say to the person on crutches, “For god’s sake, sort your legs out and get moving”? My deep and sincere hope is that your answer to my question is along the lines of, Good grief, Darren, no, that would be awful. Okay, that example situation was oddly specific, so let me widen the context with an even more provocative question…
Imagine you’re walking down the street and you see a blind person. You know the person is blind because they have a white stick and an assistance dog. One of those infeasibly cute labradors. Its tongue is hanging out while it grins in that adorable way, but it’s being really well-behaved and not fussing at all… This getting off track, focus Darren. The blind person, yes. The blind person is having some difficulty navigating an obstruction in the street, even with help from Benjy (I’m calling the dog Benjy). So, in this situation, would you say to the blind person, What the fuck is wrong with you, are you blind? I hope, I really do, that you wouldn’t say anything of the sort. It would be horrible. Where am I going with this unpleasant line of thought? Come with me and find out…
I’m autistic. This is hardly a secret, considering I shout it from every rooftop on the interweb. I’m open about it in real life, too. I’m pretty much certain that every single person who knows me knows I’m autistic. Well, when I say they know I’m autistic, for many of them what I mean is that they have a label called autistic which they know they can apply to me, but beyond that, they haven’t got a clue what it really means. I probably add to the misunderstanding in a way because, as much as I talk openly about being autistic, I also, sadly, mask with quite some verve. Masking is ingrained into me, and I can’t let it drop. But, you know what? It shouldn’t really be up to me to base my behaviour around educating people who simply can’t be bothered to learn about autism. Anyway, I’m autistic, everyone knows it, and yet sometimes I get treated in a shitty way because of it.
Let me do a quick side-swerve into neurodivergence. The lines are blurring in how we talk about neurodivergence, I feel. There are some parts of my neurodivergence that I’m no longer sure are autism or some other aspect of neurodivergence. Don’t bother sending in your explanations to this because definitions change, and where neurodivergence is concerned, I think the terms and definitions we use are going to evolve dramatically in the coming years. Autism right now is actually really hard to define, and not everyone agrees on how to do it. So, with this in mind, let me talk about physical coordination and spatial awareness…
I often describe myself as clumsy as fuck. Am I being hard on myself? Maybe, because I see this trait as part of my autism. Others might say it’s not autism, but a different aspect of my neurodivergence. Undiagnosed dyspraxia, perhaps. Anyway, I trip over my own feet, fall over, knock things over, drop things, bang my head, my hands, my feet. I also walk into perfectly visible, unmoving objects as if they were ambushing me. It’s ridiculous, and funny, and as depressing as hell. Also, painful. Take what happened one day this week. I walked into a door. Let me clarify; I didn’t walk through a doorway (which was the intent) – I walked into a half-open door. I do this shit regularly. And it hurt. It jolted my back, and regular readers will have read plenty about my spinal troubles. There were several people in the room I was attempting to enter, and one of them came out with a deadpan, eye-rolling, “Mind that door, Darren.” The tone was clear. The comment didn’t hurt as much as walking into the door, but it certainly added to my humiliation.
Let me give you another one. One aspect of my autism that causes me huge amounts of stress, and is especially depressing, is my auditory processing disorder. This issue works in a number of ways. Firstly, if I’m focused on a task, I will sometimes not hear sounds around me, even if someone is calling me by name. Secondly, I struggle to hear higher pitch sounds. Finally, if there are a few different sources of sound around me that are conflicting, or are pulling my hearing in different directions, they will all merge into an unintelligible mess of noise in my brain, and I won’t be able to distinguish one sound from another. This might not be the type of problem the average neurotypical will associate with autism, but the ignorance of other people is not my problem (except, of course, that it is a huge problem). So when, one day recently, I gradually became aware of someone calling my name, and I looked up and said, “Sorry, what?” the person who had been trying to get my attention shouted, “Do you need your ears testing?” This comment was made in a busy room. Humiliation once more.
An autistic friend of mine often deploys the term micro-aggressions to describe interactions like this. And they come thick and fast. So, looking at the two incidents I’ve just described, how are they different from the two made-up examples I started this discussion with? Why do people think it’s okay to speak to me in a way that humiliates me, being either oblivious to or uncaring of my disability, when they would be horrified by the responses I described in my two made-up scenes? I’ll tell you exactly why. Visibility.
Some disabilities are not immediately visible, and autism, whether you subscribe to the social model or intrinsic model, is such a disability. Autism is just not immediately obvious to the eye. But the thing is, pretty much everyone knows invisible disabilities are a thing. Whether you’re at work getting equality and diversity training, or at school being taught about inclusion, or just looking at a news report about a disabled person being abused for parking in a disabled spot because they were not using a wheelchair, everyone knows this stuff. But, quite plainly, far too many people just don’t care. It doesn’t matter enough to them, so they just don’t bother applying that little bit of thought to their words and actions.
It isn’t just two incidents that have sparked this for me. This kind of stuff, and other types of passive discrimination, happens to me all the time. And each one feels like I’ve been punched in the face. Sometimes it’s like a double-punch, like when a boxer gets in two quick jabs before their opponent can react. That was the case with the person who shouted at me about getting my ears tested. Punch one was ableism. Punch two was passive-aggression; the person was annoyed that they’d had to put a bit of effort into getting my attention, and so deployed what I’m sure they and many others would claim to be “a bit of banter”, with the ears-test remark. But it was actually a neurotypical way of saying, Pay attention to me in future and don’t make me waste my breath. I didn’t spot that neurotypical deployment of subtext at the time; a lot of that stuff goes over my head in the moment. But given enough time, I’m very, very good at decoding neurotypicals’ language and interpreting their behaviour. It can take me a long time, but I get there eventually. (I think my ability to eventually get to the hidden heart of neurotypical motivations and subtextual language is one of the reasons many readers of my fiction say my characters are so realistic. I digress.) But aside from those little punches to the face, every now and again, someone lands a haymaker on me that leaves me absolutely reeling…
I wanted to buy a few more premium bonds for my account with NS&I (National Savings and Investments). But a technical issue led to a declined transaction. I raised the problem with NS&I who insisted my bank was at fault. At this point, I decided to just google it, and see if other customers had experienced the same fault. Sure enough, a simple problem emerged… I had recently changed my address, moving from one rented flat to another after the house purchase fell through, and I had forgotten to update my address with NS&I. So, when the address information conflicted with that at the bank, the transaction was declined. Simple then; all I had to do was change my address details on my online NS&I account. Easy, right? Right? Well, dear reader, it was far from easy…
Since moving home, I have had to update my address details with: My banks, my employer, my insurance providers, the DVLA, the passport office, various retail accounts, the city council, Yorkshire Water, my electricity supplier, etc, etc, etc, and it has been straightforward on every occasion. You just go to the relevant website, log into your account, click to change your address, type in your postcode, select the correct address from the postcode list, hit save, and you’re done. Easy peasy. But then I tried to do it with NS&I. Their website simply doesn’t recognise my postcode, and there is no option to manually enter your address. The only option to resolve this is… wait for it… make a phone call. Like many autistic people, I struggle with phone calls and they stress me out immensely. I have actually changed jobs twice due to not being able to handle the volume of phone calls involved. Reader, I couldn’t face phoning NS&I. I’m sorry, but no. So instead, I searched and searched until I found an email address for complaints to NS&I. I explained the problem in detail, and received an emailed reply acknowledging my complaint and giving me a reference number. Then two weeks passed with no further contact from them. I went to my online account to see if they had resolved the address issue, but nope; I still could not enter my new address, and could not purchase more bonds. So, I commented about this on Twitter, tagging NS&I’s help account. After a couple of exchanges, the person working on their Twitter account asked me for some detail in a private message, so I sent a brief overview of the problem, including an explanation that I am autistic, find phone calls stressful, and that as NS&I don’t provide any other route to solving the problem, I am effectively being excluded from their service by discrimination. And here comes the haymaker; NS&I’s direct messaged reply that absolutely knocked me for the proverbial six…
Not only does the agent ignore my assertion that I will not make a phone call because I will find it too stressful, but he lands one straight on the jaw by using the phrase, “suffer with autism”. Suffer with autism? SUFFER WITH AUTISM? I don’t suffer with autism; I suffer with a world full of neurotypicals who insist I have some kind of illness, and that I don’t know what’s right or acceptable for me. I suffer from a world in which I get punched in the face with one ableist comment after another from people who simply can’t be bothered to learn about autism, and don’t give a crap about how autistic people feel. Autism is not an illness, but autistic people suffer high levels of mental illness, particularly depression and anxiety, from having to deal with this world that seems dead set against us. I don’t understand why the NS&I agent thought it was appropriate to effectively say to me, “Nah, phone us anyway, you’ll be okay,” when I had made it clear I find phone calls stressful. Does he think that in the 21st century I have never made a phone call to a large organisation? That I don’t know what to expect? And if his phone colleagues have been trained to speak with (vomit noise) “those that suffer with autism,” why hasn’t he also had the training, which might have prevented him from using such a horribly ableist and offensive turn of phrase? It hardly fills me with confidence.
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.
I don’t know what will happen next with the complaint I have raised with NS&I. I don’t know if the address issue on their website will ever be resolved. I don’t know what ableist bullshit I’m going to be dealing with in the next seven days as I go about my life. But 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.
The Autistic Writer 