I take my mental health very seriously; I’m an autistic perfectionist whose favourite pastime is self-criticism, so I have to. I have the additional issue that if someone’s praise of me is implied rather than explicit, it doesn’t exist, which makes my mind a perfect-storm of self-doubt.
I am someone who takes great pride in kindness and generosity to others, but I am just plain horrible to myself. I must have been a young child when I first started the silent berating that would plague me for years.
Throw in a social processing condition that guarantees I will be regularly making mistakes, or that people will be regularly misunderstanding me and mistaking my intentions, and you have a recipe for poor mental health. Autism is of course not a mental health problem itself, but autistic people have far higher rates of mental health issues such as stress, anxiety and depression, than the general population.
I was an angry teen, frustrated by the constant injustices I saw all around me. I wanted the world to be fair and it isn’t. There is no underlying balance of justice; bad things happen to good people, good things happen to bad people, sometimes the people who refuse to take responsibility for their actions are the ones who get away with it, and the person who waits their turn is the one who goes without.
The world is chaos and I like order, the world is interactive when I like single-player, the world is loud and bright when I can’t always deal with that.
Without my late-in-life autism diagnosis four years ago I would never have been able to find ways to be healthy and happy. How can you do what is right by your brain if you think you must function in ways that you don’t? How can you be happy when you’re comparing other people’s strengths with your weaknesses?
I would wonder how other people found making friends so easy. Why was it so hard for me? Why did no one care that I found patterns and problem-solving easy, why were those interactions the things that were most important? Why could I be brilliant at my job but not valued as much because I couldn’t perform the water-cooler chatting as successfully?
It was thirty-five years of getting things wrong and not understanding how to change that. I had got my mimicry of social-reciprocity as close as I could to the real thing, but it was never close enough, and I would always slip at some point.
I was horrifically anxious of change, going to new places, doing things alone, and unexpected small-talk, but was unable to express it at all. I was always told how confident and together I appeared. This seemed to put people off more; they couldn’t see when I needed help because I didn’t know how to communicate that to them – in truth I still don’t.
For a while I got a FitBit for the sole purpose of tracking my heart rate throughout the day. I have a good resting rate of about 65 beats a minute. Throughout the day it would spike to over 140 for various reasons; small talk in a corner shop, a diversion on my route home, an unexpected knock at the door. I was going through fight or flight rushes of adrenaline several times a day as normal.
The days where I didn’t have those spikes were the days where my routine was safe; I could go for a walk without bumping into anyone, I could focus on a project, I could breathe.
Sometimes I wonder if perhaps I should disappear from the world and take up a Hermit life, but it’s not enough. I need the world, I need people, I need those interactions and changes that can cause me stress.
I came to the conclusion that there are different parts of me that need to be fed:-
- There is my project part – some would call it interests, some would add the word ‘special’, I like to think of them as my current projects – I love to entangle my mind fully in something I love, it brings me great happiness.
- There is my sensory part, that demands to be fed with tactile, visual, and movement stimming. I feed it with pleasant sensory information and it drowns out the unpleasant sides of the world and soothes me.
- There is my nature part, that needs time in the natural world, noticing the patterns and webs of the world and how we fit in. I used to really struggle with this (particularly when feeling low), because it would so often involve having to interact with people to get there. When I crave nature it is at the same time that I shun people. How do I get to one without crossing paths with the other? It was a real issue, and I would often rely on bad weather to keep other people away. All I know is that I needed to find a way to access it without draining my other reserves. My solution of moving to the middle of nowhere is not to everyone’s taste, but we all need to find our own balance.
- There is my social part – I know, I know, if you’re autistic you’re not allowed to need people, but we do. It’s a horrible myth that we don’t need to socialise, we really do. What we don’t need is to constantly socialise in our second language . We need to be able to communicate in our natural ways, with people who understand us.
- There is my art part, that starts to crave seeing something meaningful. Whenever I go to see friends in London they try to take me to parks, but I have green spaces in abundance at home. What I need from cities is their galleries, their art installations, their graffiti. You city-dwellers, you take for granted the art you pass by every day, just as I can take for granted the natural beauty of my world. It feeds something in me, and I need to consume it as well as make it. I need to be creative and to see creativity.
- There is my humour part. One of my interests is comedy, I have always been an obsessive watcher of comedy shows. Whilst other people loved going to music gigs I was more interested in stand-up. There is nothing that bonds people more than laughing together. A group of people, all sitting side by side, no one making eye contact and sharing in our reaction to the sublime and the ridiculous, why that sounds like my perfect social occasion. As an aside, I suspect that undiagnosed autism is rampant on the stand-up circuit – if you can’t work out how to have conversations, what better way than to hold court on a topic you adore?
- There is my time alone part. I am fed by time to do what I need to do, and drained by time in company doing things I have to do. It is all balance and beauty and keeping those energy levels at a point.
- There is my minimising social media part. I have limited energy to spend on social media, it’s one of my frustrations. It would be great to share my work and interact more regularly, but I find it draining. I find the pain and anger of others difficult to deal with, I find the entrenched opining exhausting. It’s important to remember to ‘never read the comments’ and that no one expresses their views on social media to have their minds changed. I dip in and out, I prioritise the gentle beauty of Instagram over the edginess of Twitter. I love Twitter for so much; it is where I first found the autistic community, it is where I learn so much from things people share and write, but it is also a howling void of despair for me if I stay for too long. I want to put the world to rights, but Twitter is not the place to do that – not for me anyway. We all have to work to our own limits.
I could go down all the standard sensible things too; I know I feel better the more exercise I get, I feel better when I eat the right things, I feel better when I have work that I love, but we know all this. I don’t always eat well because sometimes I want to gorge on something grotesquely carb-based. I don’t always exercise as much as I should because it takes time and watching Netflix is right here.
I am much, much better these days at not beating myself up when I don’t do all I should, and praising myself when I do. The carrot is always better than the stick when it comes to mental health.
Like physical health, mental health isn’t about getting to a point and then stopping. I can’t lose three stone and get really fit, then say, ‘Done it!’ and go back to eating what I want and doing no exercise, without expecting that weight to welcome itself back on my hips, and for my fitness to slam the door on its way out.
The same goes for mental health. You can’t go to therapy at a bad point in your life, do the work to get well again, and then carry on as you were before, not without ending up ill again, it’s not how it works. The good news is that whilst some of it might be difficult – like keeping on top of that nagging voice that wants to criticise every mistake – other bits are about indulging the stuff you love – making time to do the things that interest you.
Yes, it’s always easier to watch a boxset and zone out, or head off down an internet rabbit hole, but it’s not always what’s easier in the long run. That’s not to say that those days spent resting and doing just that were not fabulously spent – because some days are for nothing more than existing and getting through – but even on those days if you can spend five minutes doing what you love, or five deep breaths of outside, or five minutes of remembering a good day, then that is five minutes well spent.
Happiness isn’t a perpetual state of being, it’s something to strive towards, every day; we each have our own things that bring it closer and push it away. I am so much happier now than I have ever been at any other time in my life, but I still have bad days, and that’s okay too.
Sometimes it’s worth remembering and mourning a world that isn’t fair, before living in the world we have.
Autism and Expectations 
I am happy to hear from you – I was thinking of you last night and realizing I hadn’t seen posts from you in a while – though that could be because I haven’t been on wordpress very often due to being busy and it’s easy to miss posts! I find it interesting that you like comedy so much because I thought that some of the nuances of comedy were things that it could be difficult for someone with autism to grasp sometimes. I’m happy that you don’t have this difficulty! Can I say ‘difficulty’ without it being a criticism – it certainly isn’t. Many years ago before I lived in the US my then husband and I went to a stand-up in New York. Most of the jokes past us by because there were so many that only** made sense if you were immersed in the culture.
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I think it can be another “language” to learn. A lot of my echolalia when I was young was based on comedy shows. I know some autistic people can find humour difficult, but I also know of many who love it or who do comedy themselves. It’s just another way we are all marvellously different
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Never been formally diagnosed, but some people have said I might be autistic. As a random point of interest, once my mother and I went to the movie theater. I went ahead of her to get seats for the film we were seeing. Apparently one of the employees went up to my mom and said something along the lines of, “I don’t mean to pry or seem rude, but does your daughter have Asperger’s? I do, and go to a group of others with Asperger’s. And I thought I noticed some of the same things in your daughter.”
When Mom mentioned this exchange to me, I was kind of curious what he noticed, specifically, that made him think that. Didn’t talk to the guy after the movie, though, so didn’t really find out more beyond that.
Getting onto the subject this comment is supposed to be about, my first grade teacher was talking about what it was like teaching me. Apparently she would sometimes make funny quips to other adults, which generally went over a first grader’s head. Often I would laugh when she joked around with them. “Wait, you got that?” But some of my early memories of reading involved comics like ‘Peanuts’, ‘Garfield’, ‘Calvin and Hobbes’ and ‘For Better or For Worse’, so humor wasn’t a foreign concept to me.
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Calvin and Hobbes was always one of my favourites. There is definitely a “language” or style of communication that goes with autism. I would never “diagnose” strangers, but there are certainly times when I note how easily our conversation flows.
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“When I crave nature it is at the same time that I shun people.”
Rhi: I’d like to return to my (people-free) trees.
If you were to look at my settings for Twitter, you’d see a list of muted words about fifty miles long. I’ve muted various swear words, stuff relating to politics (including the word ‘politics’) and various other stuff. Sometimes I mute words because everyone’s talking about some TV show, movie, etc. I don’t care about, and I got tired of the hype, but often it’s just to filter out some of the garbage.
I can be somewhat of a perfectionist myself. And between various bad events in the past few years, not entirely knowing what I want to do with my life, and all of my friends living some distance away (How do you make new friends? Oh yeah, I have to actually go out. And then sit at the library, read my book, and wonder why I haven’t magically made friends my age.), I’m not in the most terrific state of mind right now. I’m lonely, irritable, unhappy, and quick to take things with a grain of salt. My emotions are a roller coaster, and occasionally I fall into bouts of depression where I’m just sick of everything, want to feel sorry for myself and beat myself up, and don’t care much about anything.
The annoying thing is that I’d like things to change, yet lack the motivation. I might feel more inclined to do stuff if I wasn’t so unhappy, yet I lack the motivation to start because of said mental state. It’s a vicious cycle. And sometimes when I do try, things don’t turn out, which brings my motivation down again. “Why bother? Everything falls through.”
And as much as I like to see some of the stuff people post on social media, sometimes you also find the bad stuff online, even if you’re trying to avoid it. Seeing the anger, the sadness, the world’s problems, and the stupid people makes you feel like the world stinks and people stink, and it would be better to live out the rest of your days in an underground bomb shelter where you don’t have to deal with any of it. I keep saying to myself that I should spend less time on social media or not look at the YouTube comments as much, yet I keep on doing it.
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Blocking terms is a good plan. Sometimes I go to do it and then I worry that I might miss something, so I stick to my scroll-and-run method of not staying on too long and leaving the second my energy levels dip. I sometimes wonder how much happier I would be if the internet stopped for a week every month
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Socializing is so hard! I wish I didn’t crave it so much that way I could be happier! Friends move away. Having friendships with neurotypical women is draining. And I can’t be friends with guys anymore because their girlfriends get jealous. I would never wreck a relationship that’s unethical! I just have an easier time hanging out with guys. I just have a hard time keeping friends!
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Again, another superbly stated item. Sharing your pleasures and frustrations always leaves me feeling better about myself. Thanks.
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Thank you so much 💐
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I can so relate to a lot of this! Diagnosed last year and still making sense of it all. My mental health goes up and down rapidly sometimes. Just started a new NHS job and the people part of it is the hardest to deal with, especially as the physical layout means I’m quite separate from the rest of the dept. Someone very kindly said ‘just wander up here for a chat’ – if only it was that easy! On a positive note, I’m really looking forward to your event at Hay!
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Ah yes, the assumption that “just wander over” doesn’t actually come with hundreds of undefinable and changeable social rules attached to it! No two people mean it in exactly the same way! I always have to make my own set of rules like “I shall wander over to chat about something relevant at 9.15 every day because that’s when I’ve seen that they are not busy”. These small things without any set pattern all build up to drain us.
Very much looking forward to Hay! See you there.
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I love your approach in this post, emphasising the carrots, all the wonderful parts of ourselves that need to be fed in positive and exciting ways. I especially relate to the bit about nature and how accessing it can conflict with social needs (and, I find for myself, sensory as well – even natural spots can be spoiled by distant traffic noise or barking dogs and the like). I hope to find my own middle of nowhere too.
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Thank you so much. A middle of nowhere is needed by many of us. I hope you find yours soon 💐
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Wow this post is close to home. Great read!
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Thank you!
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The diet analogy is as good one; that it’s not about working to a point then stopping, but about implementing ongoing strategies for long term health maintenance. Life in general is like a perpetual work in progress.
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Love love love, I can totally relate, even though I am not autistic, I suffer from massive depressive panic disorder, ADHD, OCD and anxiety…Not only is it relatable, but it also touches my heart. If you ever want to collaborate let me know 🙂
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Thank you, that’s so nice to hear 💐
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I am not autistic, But I do have a lot of difficulty with social cues and boundaries. I do recognize sarcasm and I love the funny. I feel like people that are outside Normative’s Need to discuss their symptoms. We need to see what works for each other so that we can move forward. I’m grateful for your blog. It’s amazing how you can isolate yourself and thinking that no one else feels it but I see you feel it clearly.:)
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Thank you, we do need to hear each other’s stories to work things out. Collaboration helps everyone 💐
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I wish I had your courage, vocabulary and experience. Depending on what study you read, 13-18% of males on the spectrum also have hyperacusis. Do you know anything of this? I just finished Carol Lee Brook’s – Tortured by Sound “Beyond Human Endurance”.
A different person, from a different part of the world telling part of my story.
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Hyperacusis affects so many autistic people that I know. When it’s something you cannot avoid it can make life incredibly difficult. I had to leave a talk at a conference the other day because someone jogged up the stairs with a pocket full of coins. With no time to prepare the pain was overwhelming and lingered for ages. These things can be so hard to deal with in the moment. Thank you 💐
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