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

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

Happy 6th Birthday!

I realised today that this week marks 6 years since my diagnosis and due to a conversation I had during the week I thought it might be a good opportunity to think and write about what my diagnosis means to me now and how that has changed through the years.

This assessment concludes that [Peggy] does have Asperger Syndrome and meets the criteria of the DSM-IV and ICD-10 due to difficulties in:  

1. Social Communication
2. Social Interaction
3. Flexibility of Thought
4. Unusual Sensory Experience

And there we have it. Just like that, I was autistic. The report was nine pages long, and reflected a little more deeply on the details but that's the bit that says it, that changes my categorisation as a human being.

Of course, it doesn't change who I am and always have been one iota: the sentences following the one above declare that "The information provided by [Peggy] and her family indicate these difficulties have been present from a young age. Over time, she has developed a wide range of impressive coping strategies to manage her difficulties in social communication and interaction - often masking the degree of these difficulties so that others are perhaps unaware of their impact."

I consider myself lucky that the process and the report were smooth for me, and the approach very balanced: both the difficulties and the benefits of being autistic were highlighted and addressed in terms of their pertinence in my own life. Reading stark facts like the quote above can feel jarring, but they were given in a context where care was taken to specify my strengths and potential alongside; a lesson that I hear could be applied elsewhere. I wrote a little about the lead up to my diagnosis and initial reactions in my first ever post on the blog, Officially Square.

That post was written nearly three years after my diagnosis and at that point there were very few people party to that information about me. Three family members, my fiance, two friends (I think... or I may not have told them by then) and two or three colleagues. I didn't publicise my blog in case someone figured out that it was mine. I swore everyone that knew to secrecy.

From this behaviour you would be forgiven for thinking that I was ashamed of my diagnosis. On the contrary, I was hugely relieved and mostly very happy to receive official confirmation of what I had suspected for the previous three years. It made sense of my struggles since childhood (that I had obviously failed to share with anyone because, you know, social communication...), my different experiences of the world and my differing needs. I'm not wrong, I'm just a different kind of person and sometimes I need to live a little differently, and that's just fine. In fact, it's good in many ways. I can understand myself better now, work with my strengths, learn ways to cope with my difficulties (still working on that!!) and explain myself to others with more confidence and accept my differences with self-compassion (sometimes...).

So why was I so adamant that nobody find out? One reason was that I was terrified they wouldn't believe me and would think I was making it up either as an excuse or to gain attention. As pointed out above, I have an impressive array of masking strategies, so to disbelieve my diagnosis is in a way complimentary to my efforts, but it would also greatly invalidate my hard work and times of intense distress. I wasn't confident enough at that point to defend my diagnosis because it still didn't feel quite right that I really qualified to be described by the criteria above. Six years of self-observation leave me rather more convinced. Along with the fact that not a single soul has challenged the diagnosis, though many have shown surprise.

I also worried that people would look at me differently once they knew. To a certain extent this still applies. Perhaps not so much as a worry, but I like to choose when and whether I disclose. I worked for my mask and I usually still use it when I meet people because I don't want their impression of me to be formed by their idea of autism; rather, I want to inform their idea of autism. I am me, and me is autistic, so this is one way autism can look. Not, she is autistic so she must be [insert characteristic/behaviour here].

As time went by and I gradually needed to inform more people (changing jobs was the main catalyst for this) I discovered a pretty much universally positive reaction to disclosure. My first experiences weren't just a happy coincidence, but most people find it interesting and useful to find this out about me (assuming we already have a positive relationship), and it helps them to be considerate of things that I find really difficult. 

So nowadays I don't hide my diagnosis, and I tend to mask less. I don't wander round telling people just for the fun of it and there are still more people who don't know that do know, but I can talk about it as a normal part of conversation and this has been helpful in many ways. I accept myself and my needs because I understand why I am how I am. I am becoming more confident in saying I'm not going to do things because I know they will make me unwell or increase my stress levels, and I don't have to be the same as other people in order to be a worthy member of the human race. If something is bothering me I'm more likely to verbalise that now, and even if it doesn't change the situation it helps my internal state. I will engage is certain regulatory behaviours in some public or social situations because I know those people won't bat an eyelid because they know me (there are many others I still keep private). Because I have shared, my colleagues can help me when I'm in crisis, and they can help prevent me getting to crisis.

Was it worth seeking a diagnosis for something I already pretty much knew? For me, yes. And even more so than at the beginning. Personally (and this is not the same for everyone), I could not have assimilated autism into my understanding of myself without a formal diagnosis. I needed that to begin to accept that I genuinely have a reason for what I now know are my autistic traits. I'm not just wrong or weird (although I am pretty weird!). I can get the support I need at work, which I wouldn't necessarily without a diagnosis. I understand and therefore accept and can help myself so much more than I would be able to without knowing this about myself, and I can help others help me too, and I can broaden their world by exposing them to people whose brains work a bit differently. 

Am I proud of being autistic? Not particularly. Am I ashamed of being autistic? No. I just am. Would I be proud of being 5'7"? Or ashamed of having size 6 feet? These are all just thing about me and knowing about them helps (imagine trying to buy shoes if you didn't know what size your feet were. It would take a lot more effort!).

Happy 6 years.

Please ask if you have questions about my experiences pre- or post-diagnosis - I feel like I haven't quite managed to capture everything here and different nuggets will be helpful to different people at different times :)

"I find you a calm person to be around"

I thought I'd share with you all something my Brian has been playing with that rather amused me. It was funny because it happened during the week about which I wrote my previous post.

Several different people commented to me about how I am a calm influence and a calm person, and relaxing to be with. This brought an inward chuckle as I happened to have been dealing with an increase in anxiety, disordered thoughts and feeling overwhelmed. I know the comments were based on longer-term relationships than just the last week, but it did make me think because at least one of them was about one day in particular, and a day when I was feeling anxiety and was doubtful of my ability to cope!

Now I must admit that all of these comments came from colleagues, and therefore in a place where I do tend to be performing and making an effort to be at my most functional and presentable. But bear in mind that these are all also people who have seen me at my worst, when anxiety is playing its game well, and they still see me over-all as a person who spreads calm.

I was really pleased to hear that this is one way that people experience me though. One thing we can never do is perceive ourselves as others do. We spend a lot of time thinking or worrying about what others think of us, and our flaws and shortcomings can seem like our main characteristics when we look through our own eyes or imagine what others see, but my discovery this week is that we really can never know.

This makes it especially important to reflect back to people the things that we appreciate about them. It was perspective-changing and warm to know that other people can genuinely get something positive from being with me, and that they're not just saying it because I asked or because they know I benefit from positive feedback: the context was each time not about me but about somebody else's needs that I could provide for. So let people know how they benefit you!

Aside from the warm fuzzies though, I was a bit bemused that calm is a characteristic that apparently exudes from me. I am often troubled by anxiety. It invades my dreams, I have to live by lists to try and keep the zooming thoughts tethered in some way, I really struggle in social situations or when I am out of my comfort zone or put on the spot.

I came to the conclusion that there are a couple of contributing factors to my apparently calm aura, most of which can be linked to my autism (entertainingly, as that is also the source of much of my anxiety!):

Processing time

Until recently, I never considered that I may have any processing issues because my language skills have always been fairly advanced. I am very grateful for this as it allows me to understand and take part in the world, but am finding now that it can mask delays in my understanding, interpretation or processing of situations. I find it very difficult to answer questions on the spot if they require more than a simple factual response (frequently my brain is working on such questions for hours or days afterwards, when I may be able to form an answer that actually reflects my true thoughts or feelings on a matter). Sometimes it is only once a conversation or situation has moved on that I realise what somebody actually meant if they were speaking figuratively. 

The emotions of a situation do not tend to hit me as it happens (sometimes they don't hit at all, sometimes I don't recognise them and sometimes they hit at a random unrelated time and it takes me ages to figure out what they are about). I am learning to stop and think through when something emotive has happened in order to identify my emotions and allow myself to feel them. This probably sounds a bit strange and unnecessary (why bother feeling things, especially painful things, if they don't ask to be felt?) but it seems that even if I don't consciously feel them my emotions are still there in my body and brain, contributing to my general stress levels, but in an even worse way because they are unidentified and not dealt with so they don't disappear. Intentionally getting them out to examine them keeps the old Brian tidy and helps to reduce overload and destructive coping mechanisms.

After all that waffle, what this means in the "exuding calm" situation is that I may not have really processed what has happened/is happening and it is unlikely that I have felt any reactive emotions regarding it. I can therefore respond in a calm and functional manner, dealing with the facts, logistics and problem solving (providing I have the imagination to see the solution, which is another matter entirely...).

Source of anxiety

Although I deal with plenty of anxiety, the sources that tend to trigger this for me are likely different from those that trigger the majority of people. Other people's problems do not stress me out (I care about them, but don't tend to feel anxiety about them). Children spitting in my face or biting or scratching me doesn't stress me out. The things that cause me anxiety are thinking I have done something wrong or displeased somebody, any perceived failing on my part, injustice or people being treated badly, and sometimes changes to routines or expectation. 

Of course other people share these sources of anxiety, but the things that don't cause me anxiety mean that in situations that many find highly emotive such as day-to-day experiences in my work, I can respond with less emotion and anxiety. I don't feel bound by the social "norms" that dictate that yawning is rude because it says you are bored (it is a natural bodily reflex...), farting in public somehow means you are revolting (again, a bodily reflex), or not looking into somebody's eyes means you aren't listening or don't respect them (or maybe you're just trying to concentrate on what they're saying...). If a child spits at me it is similar. I don't experience that personal offence that most people naturally feel (again, instinctively - they can think it through with the same logic as mine but for some reason my brain skips the emotive/anxiety response here) so I am straight on to "How uncomfortable must this child be feeling in order that they must respond like this. How can I make it better?"

It doesn't always work like this, and especially when I am tired or stressed there are things that provoke that reaction in me, but I find it really useful that often the reason I appear calm is because I genuinely am not bothered by what has happened.

Difference in expressive emotion

This one is pretty simple. With autism, people don't always express emotions in the same way as non-autistic people. So I might be anxious or stressed but not look like I am to somebody who doesn't know me well enough to know how that shows itself in me.

Obviously when it gets to shutdown stage it's generally pretty readable that something is not right, but with my anxiety, from what people say, if you don't know me well you may not know there's anything wrong until it's very very wrong (And until recently and still sometimes now, I also may not know! And am even less likely to be able to tell you.).

So I appear calm more often than I actually am calm, which probably helps with people feeling relaxed around me. We all feel more relaxed around someone who appears relaxed, right?!

Intentional masking

And in case not feeling emotive or anxious or not appearing to be even if I am feeling it doesn't account for my calmness entirely, we have to add the fact that I do still intentionally mask sometimes. This was how I was able to take part in the world with a largely convincing performance of "normality" for so many years before discovering I was autistic, so it is a natural thing for me to do at times. I do it to maintain my credibility in a professional context and also in social contexts. If I want to be treated like everybody else I have to act like everybody else and I am glad that I have the skills to have this choice available to me. There are people in whose company I mask much less, if at all, and there are environments in which I am largely putting on a performance in order to participate. Positive or negative, that's how it has always worked for me.