Part 5 Of My “What Is Autism” Series
So it’s finally time to write my blogpost on the concept of “Need For Sameness”, an issue many autistic people have. And before I write my autism blogposts, I typically have a very, very naive notion in my head. And that notion is, “This blogpost is going to be backed by science! It’s going to cite cutting edge research on autism to back up my point!” And then I look at the “research”, on autism, and it’s just neurotypical “autism experts” bringing their own confirmation bias to the subject of autism. If you want to learn more about that subject, I did a post on it:
Autism research is typically just neurotypical people stereotyping autistic people. It would be like asking the opposite of Belgians about Belgium. So, like a lot of my posts, this one will be more to do with my own personal experience of autism, and I hope that that’s useful and informative to people. So here is my attempt to get to the bottom of my, NEED FOR SAMENESS!
What Is Need For Sameness? (I hope you’re not going anywhere cos this’ll take a while!)
Certain things in my life need to be the same all the time, or I get upset. It’s a big part of why I have severe travel anxiety, going to a new place means going to a different shop, a different toilet, a different bed, so many unknowns. The thought of even missing breakfast can give me bad anxiety. And part of the reason I realized I was autistic was because during Covid I was afraid of restrictions ending, and there being a lot more variety introduced into my day. (This is actually a quite complicated subject. It’s not as simple as during Covid I was happy, in fact I don’t like to be reminded of Covid now. But at the time I found the repetitive nature of my days to be comforting.) So, why do I always want everything to be the same? Is it autism or to do with the way autistic people are treated? And, do I always want everything to be the same or does it depend on context?
International Travel, What Helped Me Understand That I Have This Issue
Perhaps it would help to explain why I’m no longer able to travel internationally. The first time I travelled to Berlin, everything went fine. The next time I went to Munich, this time on my own. I was stuck for a while in the city of Dachau, it was hard to find a taxi and I didn’t know how to get a ticket for the train, and I began to fear I wouldn’t be able to get back to my hotel and I would be stuck out in the freezing cold. I did get back to my hotel eventually. But on the way back, due to confusion about when my plane was taking off, I almost missed the plane. All in all it was an enjoyable trip, but I think even at this early time an association had started to form in my head i.e, going to other countries means you risk being stuck somewhere unfamiliar, or perhaps even having to sleep in the cold.
The next trip was to Paris, and although it went well enough, I felt sick inexplicably beforehand. I concluded years later that this was an anxiety attack.
Next trip was Portugal, where I became dehydrated and reacted badly to the heat, and became sick for a short while.
The next trip was to Edinburgh, and on this trip, I became lost, and didn’t get back to my hotel until midnight. Nothing bad happened, but I was worried about being in a different city late at night. Being in Cork late at night often but not always doesn’t faze me, because I’ve lived near the city long enough to know what parts of the city to avoid while late at night, while in Edinburgh I didn’t know. And then the plane was delayed, and I didn’t get back to my own bed until 4:00 a.m. This was not the last time I would travel abroad, but it would contribute to the anxiety build up.
Next trip, Budapest, things went okay. But I felt sick before I got on the plane back to Dublin, realising years later this was an anxiety attack, just like before Paris. Later that year, going to Dublin to see a gig, I became anxious as the plane was landing, not too bad, but on every trip after this there would be a very bad fear of flying, except funnily enough, on my last ever trip to another country, by which time I’d realised it wasn’t really the flying that scared me.
For my trip to Warsaw I had very bad anxiety before the trip and on the plane. Reykjavik my anxiety was only moderate, I think because it was one of the best places I ever visited it had a calming effect on me. In Rome, bad anxiety on the flight out, and I felt sick in the hotel (years later I would realise it was anxiety.
And then there was the trip to Oslo, the last trip abroad. The nail in the coffin for me was that the security in the airport would be different from what I was used to. Very bad anxiety attacks during every morning and every night during that trip. And what made it worse was that, at this point I knew the game was up, the anxiety had won, and this was the last trip, so I was going to fullfill a dream I had for years, to see somewhere above the Arctic circle. So it was initally a two week trip, to Oslo and Tromso, my most difficult trip yet, a trip I had arranged despite being in no fit state for travelling. But I never got to Tromso, had to pull the plug on the trip early.
So, this does all look like a bit of a chicken and egg thing. Some bad things happened, so I internalised the idea that international travel was scary, so I stopped doing it. But would these things have felt as bad for other people? Every problem I’ve talked about is something I came out the other side of. Was being away from home scary, or did my autism make it seem like it was?
I do find non frightening situations where my routine changes to be exhausting, very, very draining. For example, my routine will be changing soon enough, and I’m not anxious about it, I just think it will leave me a bit tired.
Music (No, Not The Dumb Movie By Sia I Still Haven’t Had Time To Do a Blogpost On.)
But I don’t have a constant need for things to be unchanging in every part of my life. There is one big exception, in fact a huge exception, and that is music. I like to listen to as many different types of music as possible, I dislike confining myself to the same genre all the time. In fact I’m baffled by how, in this world of the internet where Bruce Springsteen, Mongolian folk music and death metal are all just a mouse click away, some people listen to the same kind of music over and over again. The same goes for the music I write and record. The music I come up with has changed a lot over the years, and I couldn’t tolerate it being the same all the time. Not only that, I cannot comprehend people who create the same music over and over again. There are bands that basically haven’t varied their musical style at all, for years, if not decades. And I’ve nothing against these bands, but I just can’t understand it.
I have a need for sameness in every area of my life, except music, where if anything, I have the opposite of a need for sameness. Could it be because I create music in my own house, where I typically feel most safe? Possibly, it would explain why I have a terrible anxiety about long distance cycling, even though I love it. I’m hoping to cycle to the Burren next year, and the days leading up to it may well leave me a nervous wreck, but I’m still really looking forward to it.
But with music, there are no unknowns unless I choose it. Learning a new time signature could be difficult, but this is something I choose. I don’t choose for my bike to suddenly collapse in on itself thirty miles from home, something I’m in constant fear of even though it has never happened yet. But it will! It’s a statistical inevitability!
My Theory
I would like to offer a theory, and it’s just a theory, about need for sameness. The need for sameness is related to autism, we would have it regardless of how society treats us, but if autistic people were treated better it would be a manageable problem.
For example, I went to the cinema a few days ago. And when I go to the cinema, this is the best way I can describe it. It’s like, you’re going to the cinema, but there isn’t a bus to your destination that goes all the way, and you have to get two. (How I imagine that’s like for most people, I would actually be scared of this.) So, even though the cinema is walking distance from my house, for me this is still what “2 buses” level of irritation would be for neurotypical people. So it’s just a bit annoying, but well worth it. I’m not typically frightened of going to the cinema (this isn’t quite accurate, there’s often anxiety, but it’s extremely manageable.) So, some changes in routine are just, well, annoying, but I wouldn’t call them scary. So maybe, if autistic people were treated better, we would find changes of routine no more inconvenient than getting two buses. (This is not a defence of the shoddy state of public transport in Ireland!)
Same with changing some aspects of my daily routine. I like to have a big meal while listening to a podcast, and at the same time I will typically be playing a video game, or planning a cycle route on google maps, or planning what to find with my telescope on Stellarium. I do this, pretty much every day, usually somewhere between 1:00pm and 3:00pm, it’s what I’ve done for years. But on the few times I don’t do it, it’s okay. I don’t feel anxious, sometimes I even won’t do it deliberately just to change things up. And when my routine changes in nice ways on a given day, such as going to the cinema, I tend to get nothing done that day. It has nothing to do with the amount of time I have to do things in a given day, but I’ll get nothing done, because the routine change has left me tired.
So the theory I’m working on is, for autistic people, routine change, sometimes slight routine change, is tiring, not scary, just tiring, but it’s the way society treats us that makes it scary. So why is that?
Fear Of My Basic Needs Not Being Met
Travel is frightening for me. I don’t know where to get food, or water, or where to sleep. Basically, whether my basic needs are going to be met is an open question. When I’m at home, I’m able to sleep and I have access to water, and the nearest shop is only five minutes down the road. When I’m travelling, what if I lose my money and can’t buy food or water. What if there’s an issues with the hotel and I can’t stay there? What if I can’t find the hotel? So many things that aren’t entirely predictable.
I’m Afraid to Ask For Help
Is this the place where autism and toxic masculinity collide? Maybe, let’s keep going.
First, to briefly explain, toxic masculinity does not mean saying men are scum or anything like that, as I thought when I was in my late twenties. (If there was ever a topic that deserves being returned to at some point in the future it’s that!)
Toxic masculinity can mean unfair expectations that men be tough or brave, an expectation put on us even when we are completely out of our depth. (There’s more to this subject but that’s how it’s relevant to this topic.) I’m sure you’ve heard the jokes about men refusing to ask directions even when they’re completely lost. Well, that was me, to an extent still is me. It’s because I’m really shy.
I’m a tall guy with a relatively deep voice, in my late thirties. I think it looks to people like I don’t need help. But I do, often times. I don’t understand things that come easily to neurotypical people. But I look like I don’t need help. Or I fit society’s definition of someone who doesn’t need help. And I don’t look disabled. Or, I don’t fit society’s definition of disability.
If I’m far away from home, what if nobody is willing to help me because I don’t appear helpless? What if they are willing to help me, but I don’t understand what they are saying? Will they understand that because I “look normal”, it doesn’t mean I don’t need more help in certain situations that a neurotypical person might?
And this brings me to another topic, that I have addressed before. The arbitrary labelling of autistic people as “high functioning” and “low functioning”. I’ve a blogpost on that:
There is this assumption that you are either, “low functioning” “severe” or “very bad altogether”, (yes that is one I’ve actually heard!), or “high functioning” “only mild” or, and this is my favourite one, wait for it, “He can’t really be autistic because when he talks he doesn’t fall down!” Okay I made that last one up, but there’s a grain of truth in it, and by a grain of truth I mean many grains, so many grains, enough grains that they could keep you well fed for the remainder of your life. It’s not as simple as “low functioning” autistic people can’t do anything, while “high functioning” autistics have the same basic needs as neurotypical people. That’s why many in the autistic community prefer the terms “high support needs” and “low support needs”. I know autistic people who many would say are “very bad” or “severe” who can travel to other countries, but I can’t. So there’s this fear, a constant fear in new situations, when dealing with people I don’t know, that they won’t understand that just because my autism isn’t the same as high support needs autism, that I don’t need any help.
Change of Routine Means It’s An Open Question When I Next Get to Rest
Rest is important to me. Now it’s hard to define rest for me. Rest could mean listening to a podcast while simultaneously skimming article after article after article, which can hardly be described as a productive activity, but sometimes rest can mean, “Go wild with your current inability to pay attention to anything.” Other times rest can mean listening to music, and only listening to music, with the lights off so I don’t get distracted by anything in the room.” Other times rest can mean doing weird hand movements while making weird vocal sounds, this can help me shut down the forty seven tabs that are constantly open in my brain. A routine change means I don’t know when I’ll next get the rest I need. That’s why when I finished school and started applying for jobs, I was terrified, literally terrified, of jobs where the hours were uncertain. There was no certainty of when I was getting the rest I needed. In the “traditional” job, you always had Saturday and Sunday off, and that’s what I had in the factory I used to work in, so no matter how bad things got, I knew I was guaranteed forty eight hours of uninterrupted rest. But that is not the case in many jobs, and I find it frightening, not knowing when I’ll get to wind down.
I’m Afraid of What I Can’t Control
Music, both listening to it and creating it, is a paradise for me. It’s amazing to think that I’m a few mouseclicks away from Turkish folk music, metal, jazz, Tuvan throat singing, nineties alt rock, eighties synth music, it’s like a wonderful utopia! Same goes for music I create myself. Will I use electric guitars, acoustic guitars, synths, organs or a Turkish saz? What time signature will I use, will I use every time signature I can think of in the one song? What genre? Jazz? Metal? Punk? 24-Tet? Some loop pedal based stuff? So, there doesn’t seem to be any need for sameness issues in the world of music. Because instead of the rest of the world, which seems like a constant barrage of things that are unpredictable and scary, in the world of music, I decide what I experience, and what I create, and what I don’t. So maybe it isn’t so much “sameness” that I need but “random scary things not happening.”
I’m Afraid Of The Unknown
“But everyone’s afraid of the unknown, are you saying just you, and only you, are afraid of the…….” Alright, okay. I was just coming to the fact that this is the one I think we can all relate to. Because I think we all of a need for sameness. This is not an argument that we are all “a bit autistic”, because autistic people can often experience, for want of a better word, a more extreme version of what neurotypical people experience. But I think we all have a need for sameness, just at a heightened level for autistic people, because that which is unknown to us, is often very scary. Add in a few extra details to my trips abroad, perhaps more of a language barrier, maybe less knowledge of the countries in question, and staying for a lot longer, and I think you’ve got something that would be very frightening for a lot of people, both neurotypical and neurodivergent. So we’ve all got a fear of the unknown, but I think for a variety of reasons that fear is often heightened in autistic people.
This Is the Longest Post I’ve Ever Written, And I Feel I’ve Barely Scratched The Surface Of What Autistic Need For Sameness Is
So I definitely will have more to say about this issue at another time, but I think I will leave it there because it’s the longest thing I’ve ever written, and if I keep going, it might NEVER END! If the issue of need for sameness isn’t clearer to anyone reading, it’s because I’m also trying to figure out the issue myself. I think it’s the kind of issue that can be compounded by other issues. For example, I also have a difficulty with breaking things into small parts in my head, so I will perceive one huge task instead of ten small tasks, so that means I often feel terror at the coming year, because I perceive all of the changes of routine as one giant change of routine instead of a hundred small changes. I’m exhilarated by the possibilities and opportunities of 2023, but also terrified by the coming routine changes. Hell, the year is nearly over and I can’t even break down the routine changes left in 2022 into manageable chunks.
So, this was longer than I hoped, and ramblier than I hoped, and it had less of a concrete conclusion than I hoped. All I can say is, I feel sorry for anyone if they are a first time reader. So I’ll leave it there for now, and hope to write more on this topic in the future.
Ponderings Of An Autist 