Hatty Christmas!

🎵With your hats and my hats and my hats and your hats the more we get together the hattier we'll be🎵

Attention, all neurotypes: This is your friendly neighbourhood reminder that it's OK and a good idea to do Christmas however it works best for you. Introvert, extrovert, lonely, content, anxious, peaceful, grieving, joyful, scared, however you're feeling.

This song has been going round and round and round and round in my head since it invented itself when Lil' Peggy brought me our hats for a walk yesterday. In case you didn't sing it in your head or don't know the original song, it is a truer and more inclusive version of the song "For my friends are your friends and your friends are my friends. The more we get together the happier we'll be"

Of course the original song is a lovely sentiment and probably designed to promote inclusion. And it's a pleasing rolling tune that's easy to pick up, fun to sing and sticks on your head. I like it. But it's always irked me that it's just not true! For me at least!

Other people's friends aren't always my friends. Although we may share friends or their friends may become my friends, occasionally we really don't get on. Certainly I may not have met them yet, in which case they absolutely aren't my friends even if they may be one day.

And I have a definite social battery, so "the more we get together the happier we'll be" just ain't it! I do actually like people and need to enjoy spending time with them, a discovery I was pleased to make a few years ago, but the quantity and frequency of my socialising needs to be a lot less than for many others. I need down time to recharge alone and space for regulating activities. More does not infinitely equal happier!

But with my hats and your hats, we will definitely be more hatty the more we're together (if hattiness = nHATS x tHATS, where n=number and t=time in presence of).

Some great adaptations I've made to Christmas the past couple of years have been to allow myself time out where needed (this builds itself in naturally with a small breastfed child, but I had planned for it before the child came along too, although I didn't get a chance to implement because of covid), and to only spend a few days at a time with people if going away. We do go and stay with people a few times a year either as a family or me and the smol, but I now know my limits and tend to keep it to about three days at a time because I know that this is about my capacity before the balance between benefit and difficulty starts to tip.

Knowing what is going to happen and what to expect helps me a lot and my Peggies-in-law are amazing at this - before we go to stay with them they send a suggested itinerary and meal plan. This is fantastic because it means we can make any necessary changes or flag up things they need to be aware of (Little Peggy can't have cow's milk so when buying things like pies from farm shops they need checking) and I know what is happening and what is available. I can also look at menus in advance so I'm not under decision pressure at the time, and I can decide how I spend my time depending on what will be happening (eg. if I know we'll be out all afternoon and evening I might spend more time in the morning away from the family to minimise overload). Even little things like deciding what to wear (inside/outside/formality of occasion) are helped by understanding what will happen when. It just helps my brain relax because I am often thinking about what is coming up in my day or week so I can be prepared for it, and if I don't know then that thought keeps buzzing round taking up brainspace because it's unresolved.

So. If you know something that will help you at Christmas (or any other time!), to quote (slightly out of context) a very wise Peggy who has helped me a lot "it's OK to say it."

Note: saying it explicitly may be more uncomfortable but may in the long run be more helpful because then others are aware and can help to make sure the adjustments that help you cope are kept to, or can show more understanding of any struggles or make different accommodations if they are not kept to.

And last but definitely not least, if you have been brave enough to say it and others have disregarded or forgotten about what you have said, that DOES NOT automatically mean you were wrong for saying it. It does not mean you shouldn't have said it, or that you are a bad person or that you don't deserve whatever adjustment you were hoping to make (or are still going to make, but are now probably feeling guilty about making). 

Sometimes things need saying a few times. Sometimes they need explaining a different way. Sometimes there's a compromise that will still meet your needs. Sometimes people will not understand. Sometimes understanding grows over time.

Stating that doing something differently would help you is not a character flaw or a crime! It might even help others too - inclusivity often benefits everyone not just the person it's "designed for." Or it might make others glad that they know they are maximising your enjoyment and wellbeing by accommodating your needs or preferences.

I hope you have whatever kind of Christmas time you need this year.

Continuity of Care: Inclusive Midwifery

I'd like to rave for a few minutes and sing the praises of my midwifery service. 

By a fortunate set of circumstances I ended up under a different service from the one that I should be under geographically. Because I am still registered with a GP in the city rather than the town near where I live (easier for me to access from work), I was assigned a midwife from the new pilot continuity of care team in our city. 

It has only been running a year and the hope is to expand this model of care across the city in future, returning to a more "Call the Midwife" type of scenario where the same small team of people look after women and their babies from the early days of pregnancy through the birth and the early days of baby's life. Each mother has a named midwife but there are opportunities to meet the other members of the team so that even if your midwife isn't in on the day you give birth you are likely to have somebody familiar come to the hospital or your home to support you. They have a weekly online Coffee and Chat where they cover all kinds of antenatal, birth and postnatal topics, signpost resources and facilitate getting to know other Mums and members of the team.

To begin with I was happy with the care and support I was receiving but I didn't completely realise how grateful I was until later in my pregnancy when I had appointments with people from outside the team (eg. my consultant) whom I had not got to know. 

It turns out I had struck gold with my midwife and her team. From the very first contact she listened to me and my needs, accommodating in every way possible and checking in regularly whether they were getting things right for me. She never failed to check whether I had any questions or worries written down and always asked verbally before we finished appointments too. She kept me on the caseload though I'm out of area because she recognised how important the continuity of care could be for me. Once she knew me a little she showed insight into what I might need and what might be difficult, taking care to communicate in ways that work for me.  She proactively liaised with my mental health team, making sure nothing fell through the cracks. She made sure I had regular in-person appointments at a slightly higher frequency than standard. She repeatedly reiterated to get in touch with any questions or concerns or to ask for help - so much so that I actually could do that if and when I needed to (something I tend to find difficult). She took me on visits to the hospital step by step and completely at my pace so that I could desensitise myself a bit to going there and so I could know what to expect. When I was in labour she stayed to personally take us from the induction room to labour ward and gave a really good handover to the midwife looking after us for the night, who after that also took great care and attention to meet my communication and physical needs. She continued this support after birth, taking nothing for granted, being clear with me and I with her, checking things out and making sure things were right for me. She always let me know who was on shift when, and introduced me personally to as many of the people I might come across as possible.

This approach made me feel safe and functional. It gave me confidence to voice my needs and worries and have these addressed. I never felt as though I were too much work, or awkward, or needy, or an inconvenience, and neither did I feel belittled or patronised despite the extra support I received; rather I felt respected and enabled in my journey towards parenthood. My pregnancy passed with as little drama as possible and with me feeling as stress-free as possible. My birth was a positive experience, despite being in the hospital. I carry no unprocessed difficulty from any of it - an increase in confidence and calmness if anything - and Baby Peggy and I are both as well or better physically and emotionally as we can expect to be.

The times I went in to see the consultant and the registrar without anybody I knew, I didn't really feel able to ask questions, I felt as though I might be judged and I did not feel safe or confident. This is nothing to do with the skill or manner of these professionals; simply that for me, the relationship built over time where I feel assured that I won't be misunderstood, is paramount to my effective engagement and therefore the outcomes of my care.

So thank you, continuity of care team and especially my wonderful named midwife, for your stellar example of best practice in patient-centred care. I hope to see continuity of care teams spread across the city and round the country.

Inclusion Makes ALL Lives Better.

Inclusion and accessibility are variably seen as either unnecessary expenditure, feel-good or philanthropic add-ons or important ways of levelling the playing field so that everybody can have meaningful participation in the things they want to do and the places they want to go. Depending on how much value you place on a life that is different from yours...

What is sadly overlooked in all of these views is the benefit that these adjustments also bring to the lives of people who don't have barriers in the way of accessing the opportunities they enjoy and/or need. I have seen occasional articles pointing this out: for a starting point you could try Joanna Grace's TEDx talk here (less than 15 minutes) or follow her on social media as she frequently explains much better than I can the myriad reasons why and how inclusion benefits everyone and not just those it is "aimed at." Or have a chat with me and I'll ramble at you about it!

I just felt like highlighting this again today after a soul-warming conversation I had earlier. I consider myself incredibly fortunate to have both a mental health team and midwife who are thoughtful and responsive and keen to work in an inclusive way, making adjustments to support me so that I receive care that is as beneficial to me as possible. I truly believe that this makes a daily difference to my wellbeing and ability to cope with and enjoy life. A current part of this work is creating a plan to reduce my anxiety and distress around accessing the hospital where I will likely be giving birth and may need to visit for antenatal care. I was discussing with a member of my mental health team some proposed steps in this antenatal plan including pre-recorded and live videos as preparation for brief non-appointment visits. 

And then came the conversation: "Well, wouldn't that [pre-recorded tour] be useful to a lot of other people as well?" "Couldn't they make it available to everybody?" and even better, "Is that something that would be useful for our service to do as well?" 

Yes, yes, and yes! Especially during these restricted times where visiting places is not routinely allowed and people are encouraged to stay at home unless there is very good reason not to, I can't think of many people who wouldn't find the availability of a photos or a video tour or street-view style navigation useful and anxiety-reducing. Birth can be a stressful and anxious time for many people with or without additional difficulties. And likewise pretty much everybody attending an unfamiliar mental health service is going to experience high levels of anxiety which may be slightly reduced by knowing what to expect visually when they arrive. Many venues began to create videos when they reopened after the first lockdown, to explain their covid-secure measures, and I have heard countless reports from friends who have found this really helpful. How fantastic to have professionals around who think one step beyond what you have said and constantly reflect on potential wider implications - the people who truly listen and seek proper understanding are the ones who make strides in care not just and not least for specific patients but also for wider best practice.

Adjustments and accommodations made to make care and environments more accessible and inclusive to me as an autistic person don't just benefit me. Because my needs are perhaps more overt in some areas than other people's and I am fairly aware of them, I can actually help make things better for the general population. With the help of the people around me who have great ideas and are willing to put in the extra work to support me, we can speed up improvements of systems that will help everyone and might otherwise have taken much longer to come to light.

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