A Walk of Faith

Let’s go there now. It’ll be nice to be ahead of the curve (at least, maybe we are ahead of the curve for some), whatever the curve is. Yes, okay, there are more than two months (depending on then you are reading this) until it arrives (at time of writing), but sometimes it is wise to plan slightly ahead of any interactions about it, isn’t it? Sometimes it is wise to seek and discover what one’s stance is and what one chooses to prioritise before one needs to know, isn’t it? Sometimes it is best to have a starting point rather than be caught off-guard and then witness oneself responding in ways one would choose not to if one had thought ahead a bit, isn’t it?

Christmas (through the eyes of this autist).

Let’s jump back a bit, for contextual purposes. All the way back to Jesus? No. Not for now. He was born (is what I believe) and for now let’s leave that as that. Let’s take a smaller jump back than that. Not so much because I need to make it (as I have (thanks to my husband’s approach with me) made my choices about my ‘now’ and the imminent date that approaches for the next one) but more to share what has been and therefore has played a part in what is now. You see, I don’t imagine, not for a single second, that I am alone in my position or experiences of what Christmas may have been or is for many autists (although our individual experiences around it will undoubtedly be different to each other too).

I choose to share some of my experiences on the ‘off chance’ anyone reading this might need to feel less isolated as this year’s manifestation of it approaches. Okay, I can’t live yours with you (and it is very likely that wouldn’t help anyway, and also very likely you wouldn’t welcome my presence) but I can give you (if you choose to hear it) one vital message: You are not a defective human if you find this ‘season to be jolly’ isn’t (jolly) but is instead full of all kinds of overloads and scenarios peculiar to this time of year that are (I will state these in terms that are not ‘dark’…although I realise the dark is likely there too) confusing and bemusing and outright weird (and not good weird).

Despite this, there may be (however) a need for us to find ways we can navigate it (at best) or find ways to manage ourselves and our sensitivities within it (or at least some of them for some of the time). It is my belief that the key root of that process is the repeat message that we are not defective humans because of how we navigate all that has become Christmas. Maybe this navigation or management will be to our own advantage. I guess it might also be of benefit to any people we might have somewhere in life who do love us ‘as we are’ (even if we mask with them too for most of the time). There might also be those who we (despite our propensity to not attach to others) have got connections with and who apparently do (on some level or other) matter to us. They might benefit too.

There are a few statements you may or may not agree with before we proceed:

• The expectation about ‘the day’ is too great (all views my own). I mean those expectations of people, of gifts, of food, of decorations, of activities…do please continue this list in your mind as you see fit. This is all too much for Dawn.
• The (ridiculous to me) need for many for traditions (specific to families or within wider metaphorical circles). This includes the need for things to be as they were or used to be. (This is an odd one for me because in most scenarios I have witnessed, I’m not convinced these traditions (or the experiences related to them) were as they were perceived to be by the ‘collective’ present at the time referred to. Each would have experienced each time and scenario differently (surely), and although for some, this might have been marvellous, for others…maybe not so much? Just a thought. Just because I was present in the same place and time does not mean my experience was the same as though who love these times so much that they positively anticipate them. And then there is the weight of these so-called traditions (that were marvellous for some) to then be metaphorically chiselled into stone for all future times to come as a measure to ‘compare and contrast’ against in future (or reflect on past) Christmases. There is also the need of some that because of the traditions and all associated activities and ways of doing the day, there is a need to make it ‘the best ever’ Christmas. Um. News Flash: There isn’t. That need does not exist. And please don’t do that. Please. For your own protection, please don’t do that. It only ends in disaster (long term). One cannot cumulatively always ensure ‘the best ever’ will be a thing and if people say it is ‘the best ever’ when it wasn’t…that’s a whole other ‘can of worms’. Oh my. All of this is also too great a pressure (all views my own). This is all too much for Dawn.
• The emphasis on making it a family thing is also somewhat overwhelming. Obviously, all families have their good, bad, ugly and marvellous. That is the nature of ‘family’ and of all human interaction and co-existence, isn’t it? Blended family situations are in many places present and even that fact is evidence that maybe those ‘good old days’ weren’t so good for everyone present (despite what seemed to be presented)? Just a thought. And within all the ‘family’ dynamic, apparently the day needs to be somehow ‘perfect’ (that makes me laugh in a non-comical way) or there is a sense that it needs to be close to such a ridiculous notion (and if it is an anticipation that isn’t said aloud, it is most certainly often implied). And within all of that, each very different individual person present (all with their different needs, perspectives, sensitivities, wishes, ways of being, humour, intellect etc) must come out of it positively. This is also too great and too much pressure (all views my own). It is all too much for Dawn.

My own personal experience (as a child and long before parenthood or my ‘late diagnosis’) was this: I spent every (&%^*@^!) year navigating a day I have little (at best) but more so no positive connection with. Before I knew about my autistic wiring, I tried to ignore everything I was experiencing and felt and instead tried to manage the day in the most positive way I could. I did this for the people around me who (and I will never understand this) apparently loved it. My sister was basically Little Miss Christmas as a child and that continued into adulthood. It needed to look like I was loving at least some of it for those around me (not just my little sis) and I could do that. In many ways, I have always done that and still do, but my perspective has shifted (in huge measure), and this is the fundamental key to more successful (even partially successful) navigation of Christmas for me.

As a child and teen however, my perspective was crystal clear (if incorrect). I was the one with the issues about this ‘time’ of year. It was me who was (negatively) weird. It was me who was somehow defective (I’m not, but then I fully believed I was) because I didn’t feel joy or excitement or similar. It was my failing that I felt like I was being crushed by a weight I couldn’t describe amidst people I am related to who were not seeming (I recognise some might have) to have any such issues.

As a child and teen, I saw that (what I now realise were overloads of many differing kinds) were making me unable to cope sensorarily, mentally, emotionally and (it felt inside) I was unable to cope in (seemingly) all ways. And, simply, my perception was that it must be my failing. All of this compounded my internal view (already back then securely established and so loud and clear in the internal voice) how negatively I saw myself.

Would my family have known? Um, no. You know what skills we have at masking, yeah? I didn’t know myself about me and they didn’t (and some still don’t) know about me…and that’s all fine. My family would (undoubtedly) have been trying to make Christmas ‘special’. Although none of us knew about my wiring then, there would most definitely have been times when my face would have turned the brightest shade of red possible for skin to turn due to embarrassment of some kind about some minute little detail or other concerning my response or reaction to something. There would also have been ‘horror’ etched on my face when some activities were imminent, or I was witnessing things outplay that made me feel uncomfortable. I would most definitely have (at times) shut down. But I knew then, as I know now, that at least within this kind of busy environment, it is possible for some of this to be hidden from those nearby. And THAT was a relief. Also, in hindsight, I can see mum was always covering me by giving me a way out of things I might not have felt comfortable with, even if I wasn't brave enough to do that. And at other times (in the middle of the stress) I can now see I couldn't recognise she was giving me an 'out', but she was.

Dawn, the undiagnosed autistic child and teen, masked (and I still do so now). I do this every single day of my life, but on ‘that day’ the need always seemed greater for me to do so. It was a bit like there was an unwritten and unspoken ruling that there was a clear need for me to put in some kind of quadruple effort to get to the point where I could get into bed at the end of it, hold my hankie, try to relax my tummy so I could make the ache (that had been growing all day because of the scenarios I’d lived through) go away. But surely, if I’d managed to smile in the right places, if I’d been engaging where I could, if I’d made appropriate conversation, if I’d performed whatever when I was asked to (singing, playing, and even at one stage delivering my Margaret Thatcher impersonation – that last one properly freaks me out now), and if I’d taken part in games (that I’d have done anything I could to avoid in any other context but realised the attempt would be futile on ‘that day’ because it would have made me a focus for reasons I wanted to be invisible), then I’d done well. I could feel proud of myself. Right? I didn’t.

Instead, I watched how everyone else seemed to have it sorted and covered and seemed to love all this. I’d be internally asking “What is the matter with me?” and there’d be the all-encompassing “everything” as a reply.

Some people ask why diagnosis for autism is important. Before I share my view on that, I firstly want to write one thing. I am a believer that we must never use our diagnosis as a ‘get out’ or as an excuse for not pushing ourselves outside of our comfort zones. Never that. If we do (although it must be the choice of each individual autist) I believe we compound and further complicate our individual difficulties. We will (I believe) isolate ourselves further. I believe we (sometimes) need to actively push ourselves outside of our comfort zones but have a level of management about how this happens. I believe we must expose ourselves to scenarios we might find challenging. I believe that can help us if we are doing it with our internal eyes open. However, because I now understand more about autism and I know I am an autist, I can boldly tell you one simple truth:

There is nothing ‘wrong with’ me.

Similarly, you with your diagnosis, there is nothing ‘wrong with’ you.

Maybe we would do well to remember that choices exist, even if we don’t see them as choices. At Christmas, if we decide to run with some traditions that others value, and if we force ourselves to engage with some of what happens on whatever for us is our version of ‘that day’ (and as I’ve written, sometimes we will benefit from doing so) we can come out of it better than we would if we didn’t understand about our autistic wiring.

I (now believe I) consistently have the choice to engage or not in any activity at any time. I get to decide if I’d like to move away from whatever it is for a while or get involved and do the best I can. I know I will need ‘time out’ away from all people following whatever I engage with (or not). I now recognise that it doesn’t matter if my responses, feelings, behaviours, ways or engagement are different to others. I’m now pleased I understand some of why I’m like I am and I can often modify what can be affected around me to protect self (sometimes that is even protection from self!).

For the last few years, since I’ve understood how I am, weirdly, I’ve been far more able to engage in some of the games or scenarios with less damage to self than when I viewed myself as broken. I’m not broken. Yes, some things are cripplingly difficult for me to navigate, but that doesn’t make me faulty. That’s just me. Others may or may not be able to cope with that but that doesn’t matter. Each time ‘that day’ comes round again, I am finding Dawn has got this and Dawn will continue to learn about self, about others and about life as she watches, adapts, adds to her own strategies of self-management and care and as she keeps breathing.

Jumping back a bit further now…I love the fact that Jesus was born and that there was all that followed. But I’ve also learned that even though people say ‘that day’ is all about that…for me, it isn’t. The fact that Jesus was born matters on any day within the year and on ‘that day’ it (I’ve learnt over time) cannot be my focus. On ‘that day’, I need to allow myself to make minute by minute choices and decisions and know that whatever I manage or don’t manage so well…it’s no different to any other day. But if I can show an 88-year-old lady who I see each week that I’m pleased she’s with us in our home on that day…I will. And if I can find a way to help Mum be here…I will. But only if she wants to be. You get the idea.

I gave my son two plants when he moved out (again) the other day. I told him (because this is what I have found for myself) that I am more able to take care of myself as I look after something or someone else. I hadn’t really thought about it much as a concept until I heard myself saying it – at least not consciously. Christmases as his mum (when he needed more of a ‘mum’ approach) were all easier and lovely and doable. Why? I guess (in hindsight) because I was doing things for him, protecting him, keeping an eye out for him, loving him. This year is different. He'll be wherever he needs to be to juggle the expectations of whoever… and I am confident he has more skills to do so than I have ever had. I’ll see him at some point, of course. And whenever I see him, it’s fab. But this year, he might not need his mum to cover the day for him at all. And so, his mum (that being me) will instead focus on her mission to get her mum here (if she’d like to come) and the 88-year-old who needs to feel welcome and loved and included (amongst other people but I’m only mentioning those two for now).

This approach of the autist looking out for those around them in relation to ‘that day’ (or indeed to life) is neither self-less nor selfish but is boldly both. And if any humans benefit from that approach, then that is my plan of action.

As autists, we’re not broken and ‘that day’ is no more blessing or curse than any other day. Baby Jesus is no more or less on that day than He is on any other day. My faith is no more or less on that day. Once I was told someone was ‘going to church on Christmas Eve because it ‘counted’ for Christmas Day’. Who is forcing that process because I’m very sure it’s not God?! Anyway, that aside, my aim is to try to manage self, not put self under too much pressure, not see myself as defective (because I’m not) and keep a (hopefully) helpful eye on anyone who might even slightly benefit from that.

I refuse (however) to try to be anyone other than who I am just because it is ‘that day’. I’ll force myself out of my comfort zone and treat the day as a further experiment about myself: How do I manage? What is the best way for me to manage me? Is my experience positively affected as I focus outside of myself to others who might need to be quietly seen? Etc.

Christmas is coming and whether the goose is getting fat or not, we’ve got this. And if we choose to or find that we do not ‘have it’, that’s no lesser choice or outcome. What is, is what is. And that's all fine and good. 

Please be kind to yourself. I will try to do the same. Please also try to not take too much notice of the negative inner talk (if it starts) about how it’s you who is defective. You’re not. I will sometimes fail (as might you), but then, I guess, I’ll probably try again…maybe…even if I need a reminder from my husband or mum or whoever. The whole thing (not Jesus, but 'the day') is quite ridiculous if one can stand back and look at it with any sense of perspective. And I’m certain, if there is a Baby at the centre of it (because yours is a celebration amongst those who believe the stuff about the Baby), He (I am sure) doesn’t need us to tick every box of expectation we feel is being imposed on us from anyone outside of us. We can choose what we attempt to engage with and what we’d rather not be connected to. And we can focus on others too, to help us distract from self, as well as that being the kind thing to do. And anyway, surely the Baby who is centre stage has the capacity for us to continue to learn how to be who we are and how we are, and to navigate the day as best we can. Simples. Kinda.