Building safe spaces

One of the things I’ve come to realise I need more and more on an everyday basis is safe spaces. These are spaces where I don’t have to pretend to be normal, with all the anxiety and eventual exhaustion that can bring. In a safe space I can take off the mask, ignore what I have been told is the fundamental strangeness of my own body language, and concentrate on the task at hand.

Since I got my diagnosis I’ve worked on making lots of everyday spaces “safe” for me as I am. I started small: with little changes to my negative internal dialogue home quickly became a safe space, and I found some quiet places at work where I could escape for periods of respite. But then I started to look at work in the wider sense, as somewhere I spend 40 hours every week and have to achieve certain goals. I enjoy my work – especially when the science is going well – but I’m not given the space to be alone and concentrate. So I realised I had to try to make more working spaces safe, even though I might encounter other people.

The process was objectively straightforward, but slow, and it wasn’t easy. Starting with my manager and a few trusted colleagues, I took each person aside individually. I talked to them about the fact that I was autistic, and that my behaviours and responses might not mean what they expected them to mean. I told them about taking things literally and not always knowing how to act in social situations. The responses were generally encouraging, if awkward at times, and I gradually gained confidence in talking to people I did not know so well. Later I organised some formal training to help give my colleagues a wider overview of what autism actually means. Now my desk at work, despite the open plan layout, can be an almost-safe space maybe 90% of the time.

Recently I’ve started working on safe spaces for other parts of my life. I go to a couple of choirs, and I’ve started to pick out individuals who might be supportive. What I’ve realised is that unless there’s an outright bully in a setting like that, it only takes two or three people to know what you’re struggling with to make the space relatively comfortable. Making routine activities safe is the difference between fighting my environment every time I leave the house, and only fighting it once or twice a week. I have more energy to deal when things go wrong.

I’ve been really lucky in encountering positive attitudes with everyone I’ve approached. An integral part of that was being surrounded by the right people, but there was also work on my part to help things go smoothly. Painstaking care and preparation went into choosing who would make a good ally and who would not. It’s important to trust your instincts here: anyone I didn’t feel I could or should approach, I left to the formal training at work, and in other settings I have learned to avoid. Timing and setting are also important, if you can control them. Disclosing in a crisis (which has happened to me on occasion) is not ideal!

But the lesson I’ve learned over the past year or so is that while “alone time” is crucial as a safe space where I can be myself, it’s not the only one. Other people can help to build and defend safe spaces for me throughout my world. Those safe spaces will be more transitory, and less than the 100% safety of solitude at home, but they are there. Learning to identify those transitory spaces and ask for that help to build has given me more confidence, and I hope will continue to do so over the years to come.

Every day

Yesterday was a bit awful. I’d been focusing hard on a presentation for a while and was struggling to connect properly with the rest of my job. I’d lost sight of the priorities. It happens sometimes – no matter how good the plan, if I’ve got too focused on one thing there’s a point where I just can’t get a handle on the bigger picture. Then, of course, I get terrified that I’ll get into trouble. Because clearly I’m just not trying hard enough, right?

So I happened to have a one-on-one with my manager scheduled yesterday, but it went off on a tangent and didn’t talk about the things I needed. We had to have another meeting today. I was kicking myself when I asked for that: I’d completely failed to communicate what I needed at the right time, so now I was taking up more of my manager’s time which I didn’t deserve. I was supposed to be briefing a colleague on a project that day, too, but ended up being totally incoherent. Not exactly a confidence boost.

So another meeting today, clarifying expectations. This one went better, in some ways, and worse in others. But I’m struck by how much better I felt coming home from work today. Yesterday I struggled even to make dinner. I had a drink to make the anxiety pipe down, and managed to do the ironing in front of some bad TV, but couldn’t cope with music practise or emails or anything. But today, having sorted those priorities, I was able to do most of those everyday things. Just because we had this meeting and I didn’t waste so much energy on being scared.

Maybe I should focus on the positives. I’m really lucky my manager is willing to take that extra time with me. And it’s pretty powerful having a mechanism I can call on to turn down the anxiety like that. But I worry about the effects on my reputation if I use it too often. I do find myself rationing help: wondering whether I’m struggling enough that I really need it, or should I keep quiet and learn to deal with it on my own. (I never do learn, by the way.) It’s needy, and that’s badly perceived, even where confidence just isn’t reasonably possible. I also worry about the things that come out sideways – the conversations I don’t mean to have, where I say what I mean without having the chance to sanitise it in advance. I care too much about some things and it always shows.

I worry because I don’t get feedback that’s consistent or easy to understand. I worry that I don’t know what people are thinking. Sometimes I catch a glimpse of myself, and I hate me. How much of that is not understanding the expectations, and how much is suspecting those expectations are impossible for me to live up to, I don’t really want to know. I worry that people hide things from me, too; but I try not to worry there, and to ask questions, because really that’s all I can do. I just have to keep asking and try to stay hopeful.

Depression and overload: what does self care look like today?

Overload is one of the easier autism-related concepts to explain to a non-autistic person. Basically, it’s what happens when you’re just too tired to cope. Strangely enough, the vast majority of people are familiar with this concept!

The difference with autism is the reason for the overload. Often because of sensory processing difficulties, such as hypersensitivity to sound, bright colours or smell, the wrong environment can put an autistic person in a perpetual state of overload and exhaustion.

My understanding of my own sensory sensitivities and triggers is still in its infancy. With the recognition of my autistic identity came the framework for realising that some things I find difficult might not actually be my being fussy or demanding, but because I actually experience the world in a different way. Even with that knowledge, though, deciphering my sensory environment and the aspects that can send me home practically incapable of changing my clothes, let alone cooking dinner for myself after work, is an ongoing process.

At some point I’ll write a bit more about overload, recovery and how I manage those risks in the workplace; but that’s not where I’m heading with this post. This post is about choosing the right self care at the right time, and how that’s not always as easy as it looks.

As well as sensory overload, I’ve also struggled throughout my life with depression. Although I didn’t seek help until early adulthood, looking back, I was an awfully depressed child! I spent some time at university not being depressed, but my life has really been arranged since junior school in bouts of relative mental “wellness” punctuating a background of depression, rather than the other way around.

Now the problem is that the symptoms of depression and overload, on the face of it, look identical. But they’re different.

Consider…

You have to stop. Stop now and curl up somewhere quiet. Your brain just wants to cry. It’s hard to think, even to move. So you move slowly: to protect yourself, to conserve your strength. You can’t cope with anything more.

You cancel social activities. You stop going out. You restrict exercise to the routes you know, because you just can’t cope with the unexpected right now. It’s almost too much effort just to go out the door. You don’t enjoy the things you love. You just need to stop. Stop now.

And at this point I ask myself: which is it? Depression or overload? Is there too much, or too little? Is there just too much of the wrong thing?

What does self care look like today? Is it a quiet night in with the lights on low, with a book and a blanket and a hot drink? Is it a choir rehearsal: immersion in music until you can feel the sound in your bones; keeping up with instructions; singing under bright lights? Or is it an evening run in the fresh air? Can I risk being up late, or do I need that sleep more than usual? Am I moving too slowly to keep to a schedule? Do I need to protect my senses tonight, or stimulate them?

What are the costs of choosing badly? What’s on at work tomorrow – what could go wrong if I’m having a bad day? Who am I meeting with? Can I afford to risk it? Or maybe there’s something I’ve been looking forward to on the weekend. Is it really worth jeopardising that?

What did self care look like last night; last week; the week before? How many choir rehearsals have I now missed? Are there real things in the medium term, whether necessary or just desirable, that will be jeopardised by my not doing something tonight? Does it matter whether I’m broken tomorrow if the alternative is unpaid bills, or not seeing a good friend for a holiday this year?

I’ll know if I chose wrong. Overloaded me can’t safely drive: she can’t process the visual signals quickly enough. Depressed me can, and probably should – she just doesn’t want to go out. Overloaded me will suffer in a choir rehearsal. Depressed me will suffer if left alone with her thoughts. All the me’s can enjoy a good book, but depressed me will be restless afterwards, and overloaded me might not even be able to focus on the page. If not allowed to recover, overloaded me will be exhausted at work the next morning. If left to fester, depressed me will struggle to get out of bed. But none of these signals come before the event.

Right now I’m overloaded. Last night I wrote a list of things I couldn’t currently do, when I’d last been able to do them, and when I anticipated being able to do them again. I looked at the list and realised I had bills piling up because I’d not been able to pull myself together to read the meters. I realised that the next time I expected to be able to make a financial decision involving more than a grocery shop wouldn’t be for another week or three. Not making that decision has implications, as does making the wrong one. So today I know that self care looks like clearing my schedule and asking nothing of myself but to fix up those bills, and maybe by the end of the day my head will be clear enough to think about finances. Sometimes it’s that easy. Sometimes it’s not.

It’s an interesting dilemma, when you’re not in the middle of it. I wonder: what would you do?

Introducing the elephant

There is an elephant in the room, and his name is Autism. I love him very much. He is a part of me, and I wouldn’t have him any other way.

My elephant is amazing. He’s bright and intuitive, and kind and loving. He likes big hugs and loves to share good things with his friends. He has big ears to hear everything, and an incredible memory for detail.

My elephant is strong. It takes some effort to get him started, but once he gets going – oh, boy! He powers through issues and obstacles like they’re just not there. Sometimes he doesn’t realise when there are too many, or they’re getting too hard to break through; he doesn’t always see when he should maybe change direction or go for an easier goal. But you give him the impossible and he’ll make it happen.

He’s not subtle, my elephant. He’s blunt, and he gets to the point. He likes to know where he stands. Sometimes he doesn’t quite follow what’s going on in a room, particularly when there are lots of people around. He just can’t switch topics that fast. He’s made for strength, not for agility. But he does his best.

It’s not always easy having an elephant. Those ears that hear everything can struggle to tune out what isn’t good to hear. Bright lights, particularly moving ones, can distract and overwhelm him. Sometimes when there are too many moving lights or sounds, or just too many things to follow, he panics. Have you ever seen a panicking elephant? When he’s frightened, I have to drop everything and focus on making him calm. Otherwise there’s no telling the damage he could do.

Some people don’t like my elephant. He’s quite big, you see, and he blunders into things sometimes that he should leave well alone. He can’t always read what people want from the things they don’t quite say, so it looks like he’s thoughtless or selfish or insensitive. And sometimes when he’s happy he flaps his big ears and squeaks, because that’s what comes naturally to him. That makes people uncomfortable, and he knows that; but it’s good to feel happy and sometimes, for a moment, he forgets. In the end, though, he always remembers.

But I still love my elephant. He is a part of me. I wouldn’t have him any other way.