April, Awareness, Acceptance, Anarchy

Okay, I'll be honest and tell you there's nothing about anarchy in this post, I just got bored of the boring stuff. Unless I decide to throw something anarchical in for a laugh. Most likely my use of the "word" anarchical is about as lawless as it's going to get.

I absolutely did not plan to write anything on this topic (awareness/acceptance etc, not anarchy) during April. I actually got a bit tired of posts about autism awareness month, autism acceptance month, people supporting it, people getting cross about it, it kind of put me off Autism a bit, as it were!

BUT as tends to happen, I had a moment which got me thinking.

I had one of those jolly things, a meeting about me, yippee. They usually start with people giving a brief overview of what has happened since any previous meeting. I was happy enough with the first person's summary of our work, detailing how we had made reasonable adjustments and Peggy had worked very hard etc etc.

Then the second person said something in their update which gave me the moment. "Peggy has made lots of reasonable adjustments for me and my odd ways of working and needs." 

Why does that sound odd? Answers on a postcard or in a comment - please do actually think about it!*

That just made me chuckle, while you're thinking about it

It was said in jest and taken as such, yet speaks volumes. I know exactly what that person was saying when they said it (I think!), and I know that they know I will receive that message though it may be passed over by others as a humorous aside.

What that person was saying was, Peggy's needs are not a problem. Yes, she has idiosyncrasies and may act or communicate differently from some other people, but actually nobody is "normal" and it is everybody's job to adjust for everybody else. While we may have made a number of observable differences to our sessions to accommodate Peggy more comfortably, Peggy has also made many adjustments in order to access our (reasonably adjusted) service.

In fact, Peggy does this all day every day in order to participate in the world, because people with her idiosyncrasies are in the minority and would not always elicit respect or kindness were they to walk through life entirely unmasked.

The person was perhaps pointing out that by highlighting the reasonable adjustments we may be making the person feel more "other," more different, more excluded, lesser by reason of us having to do something for them, or wrong because they don't fit the standard.

Of course that was not what the first person meant, and neither did I take it that way. We have a good relationship and they have been very helpful to me, even if I don't agree 100% with everything they say. They were reflecting on how we had worked together in a way that worked for both of us and acknowledging that that is not a given.

But I have to say I was glad of the second voice. It reminded me that while accommodating and including are positive and necessary there is something even more beautiful: belonging. 

I have a suspicion that the second person "gets" me better than any other professional ever has because they have a similar brain. Not on a piece of paper, but just as I find understanding comes much more naturally with autistic people or other neurodivergent people, so it does with this person. My ways do not stick out like a sore thumb to them. I am not baffling or confusing, a mystery to be solved or somebody to be scared of.

In belonging a person is of equal value, equally capable, equally interesting (or boring!). They are not remarkable, and I think that is the key: when we belong we don't have to make extra effort to access the things other people access. We don't feel like a problem and our presence isn't a speciality but a normality. To be a natural part of things is what the soul needs to be well.

It's a drop in the ocean and I wish there were more voices like that in services, but every drop affects the water around it and perhaps it rippled one or two people today - it did me.

I will always belong here

*For a suggestion, maybe one day I'll write about medical vs social model of disability but I can't be bothered right now

Safe

Writing my post about community, I mentioned that I felt safe in the community on the ward. I nearly went off on a tangent about "safe" and decided it warranted a separate post.

Most definitions of safe state something to do with being protected from or not exposed to danger or risk; not likely to be harmed or lost. I looked that up after I wrote the following, and it fits right in! Danger, to the brain, includes not only injury and illness to the body but rejection by others and not getting needs met. Being despised, ridiculed or feared (all experiences of I guess most autistic people) probably come under that heading too.

Maslow's Heirarchy of Needs names safety
as a basic need required before we can access
the benefits of engagement and learning

I have had many conversations with people who live with mental health difficulties about safe people and safe places. In the general hospital there were some people who were safe and others who weren't. With the safe ones I felt empowered where I was otherwise scared and immobilised. People talk about whether they feel safe (and thus able to work to their fullest potential) with their colleagues. It seems to be a concept that we each think we have made up and yet we all understand. So I thought I'd see if I could figure out what I actually mean when I say I feel safe somewhere or with someone. And how could I say I felt "safe" in an environment when I had daily threat responses there? If safety allows thriving, what characteristics do I want to promote in my communities and in myself, to help me to feel safe wherever I go?

When I felt that I was not going to be judged (or if I were, there were sufficient people around who understood me to counter that message of misjudgment), I was understood, I was protected, and people were kind, then I felt safe. Later on, I found that I was valued. Now, this was by no means a perfect environment and there were definitely times where these things didn't happen, and I know that not all other people shared my experience, but these are the aspects that I think contribute to me feeling safe in any context.

I think a safe person or a safe environment is characterised by:

Non-judgment. I will not be judged or rejected for my needs, my mistakes, my character, my interests, my self-expression or anything that is intrinsically me. Some actions may not be acceptable but my character will not be judged by those around me.

Understanding. My needs are understood. My communication is understood. The people around me know me - they understand what is likely to cause a problem and why, and how to help. They also understand my abilities and give me independence and responsibility in the many areas where that is appropriate.

Protection. There is protection from danger, be this danger from my own actions or thoughts, or from those of others. I am helped to learn to how and when to protect myself. Perhaps a part of this is also boundaries. Although constricting, boundaries are there to keep us safe and every community has them. The clearer they are, the safer we feel, because we understand what can and can't happen, and the consequences if boundaries are broken. When this system fails, we stop feeling safe.

Kindness. I am treated with compassion. This encompasses most of the other points but I think it is so important it needs to be listed separately. When people are kind, the people around them feel safe. See my older post on Kindness here.

Freedom from social expectations (other than boundaries). I added this one afterwards because I was thinking about how my presence or input needs to be optional for me to feel safe. If I'm under pressure from others or myself to be present, the safe feeling goes. If I need to provide something (interaction, performing tasks, making decisions, just generally engaging to a certain level) I begin to feel under threat in case I cannot deliver. On the unit I was completely at liberty (outside structured sessions) to choose if and when I spent time in communal areas, and when I was there, whether I chose to engage with others and to what extent. Nobody expected anything from me and nobody would be offended or go without their needs being met if I were not there or not speaking. When I am truly free from social expectations I am at my best socially because I can do what is best in the moment.

... and the bonus, value and belonging. In a place that is good as well as safe, I am valued. My differences are not only tolerated but appreciated. I don't feel that it is a difficulty to accommodate my needs, but a pleasure because inclusion will also help others. I am not only not a problem, but I am an asset. People are fond of me partly because of my idiosyncrasies, not in a patronising way but because they genuinely see something they like in my quirks. My peculiar perspective is helpful in seeing things differently. I am recognised for the positive additions I bring to a community or relationship instead of my differences showing how I don't belong.

Is this what safety means to you? Have I missed anything out? As I have read this through a couple of times and added bits in I have noted increasingly that the attitudes in the people around us that foster safety are also attitudes that we can cultivate towards ourselves. If I can apply these lenses to the way I look at myself, I will increasingly carry my own sense of safety with me and perhaps become less deeply affected by the responses I find in different surroundings.

Edited to add, after this post from a friend, that feeling safe is as important as being safe. The brain and body respond the same way whether a threat is perceived or actual. And feeling safe then allows us to branch out beyond our safe place or take calculated risks knowing that we can return to safety.

Community, masking and belonging

Community has been pottering around in my mind recently. And then I wrote this and the first half ended up being about masking, so I'm changing the title.

Not this kind of mask!

I wrote almost a year ago about the revelation that I actually like being with people when I am sufficiently regulated. Although I have had friends since I was about 10, I generally had between one and three at any time and didn't feel comfortable socialising with them in an unstructured way or out of the context in which I got to know them (often interest-based or non-rejection-based) until I was an adult. I considered my friends as out of the ordinary in that the enjoyment of being with them outweighed the anxiety (which was decreased by their acceptance or appreciation of my quirks). Until I was an adult I was certainly still performing or "masking" when with my friends, though less than with other people. Even though as an adult and especially more so since being identified as autistic I have become more accepting of my natural self I think I have almost always masked: it was so much of a necessary survival strategy when I was younger that it became automatic and hard to identify how I would behave if I were behaving entirely naturally. For information on masking and its dangers, see here or here or do an internet search.

As I have become more noisy about being autistic and less hide-y, I have begun to lose the mask. Most of this work has been done over the last year. 

A perfect storm of conditions came together - I hadn't gone there to try and make relationships so I didn't have any expectations of myself or any pressure, I'd never met any of these people before so they wouldn't think it odd if I was different from how I was in the past, I felt safe, I was fairly well convinced I was not going to be judged (by and large anyway, and if I were there would be sufficient people around to give me the counter-reaction), my "behaviour" would not be out of place or unusual (OK, it was sometimes unusual, but it was very much accepted and even valued and I learnt that it was OK or even good for some of my oddities to become parts of my identity), and I was so much reduced to nothing as a person that I didn't have the will or the energy to hide anything. It was a chance to find out who I am when I don't pretend, and a bit like a reset button on my life. Who am I when I stop behaving how I think I ought to behave because I want people's respect?

This, I think, is the most I have ever been part of a community, which is sad, and maybe one reason why I was so sad when I left. In life I have been part of many communities. In some I have been more myself and in others have masked a lot, but never have I been able to simply be until this point. On second thoughts, perhaps it's not all sad. Perhaps it's happy that finally all the pieces came together at once to allow me to discover that there is a possibility that I can be me, and I can be me safely and happily with other people. And that the time when I didn't mask was when I first found belonging - it was my true self that belonged, not some self that I thought I was meant to be. There were things in my past communities that could have been more inclusive and helped me to belong, and there were things in me that needed to be in place to get the most out of the opportunity (look, both of these things can be true!! If you read my earlier post...). The right people, the right environment and the right point in my life experience came together to give me a kick-start on finding myself, accepting myself and educating others about myself.

Now I have to learn how to translate that into the real world. The real world is not made up of only people who understand neurodiversity and are full of compassion. But the more I carry on being me, the more I find out just how many of those people there are. And the more I carry on being me, the more people will become compassionate understanders of neurodiversity as they find out that people like me aren't scary or dangerous or incapable, to be despised or wary of or changed or hidden away. 

I have often been scared of communities in the past because I have been either on the peripheries of them or an outcast. Sometimes I have sort-of-belonged-a-bit but never felt comfortable except with a couple of people. Communities have never been somewhere I can relax. They have been fraught with danger and vulnerability, so many ways to get it wrong and find out once again that you don't belong. So I have preferred to stay with my one or two people outside the circle where we're happy. And I'm still happy to be there, but I've found out that there are circles that I do belong in too. If I am naturally myself the circles start to find me. My work circle is becoming a place of belonging - there have been pockets of belonging there since day one, but I restricted that circle by hiding bits of me. As I start to be myself, instead of my circle shrinking and my being cast out, my circle is growing. I am becoming part of the family. I am valued and cared for and I am OK with that. Actually, it turns out that I like it. 

If I don't accept myself I don't give others the option of accepting me. They may choose not to, and there are certainly still those around who don't (the security guard outside the supermarket when I shutdowned yesterday... luckily he wasn't nasty, just annoying, and the Supermarket Lady and Hair-Changing Passing-By Work Peggy were very understanding and helpful), but if I judge what I think they'll do without even giving them a chance, then although I may be protecting myself, I may be missing out too.

Will I be brave enough to offer this opportunity in some of my other communities I wonder, and will they take it up? And will I find anywhere I belong quite as naturally as with my fellow loonies?!

Now I have discovered that being part of a community is something for me too. It may be scary and involve risk and investment, but a safe community for me is a thing that can exist and a place I can thrive and belong and have all those things that people think autistic people don't want or can't have. Only because we've grown up in a society where we don't understand most people and most people don't understand us do we all have those beliefs. Autistic people do benefit from belonging, and we can belong safely.

Picture from https://artmiabo.blogspot.com/2015/08/colours-in-circle-abstract-art-by-miabo.html