News and Knowledge

Rhi, a self-advocate, discusses caring for her mental health as someone on the spectrum. This piece was originally posted on Rhi’s website on May 14. It is re-posted here with permission.  

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.

About the Author

Rhi is a multi-media blogger: she uses her personal website (http://autistrhi.com/), Twitter (@outfoxgloved), and Facebook (AutistRhi). In addition to blogging, Rhi is a poet, playwright, and public speaker.