Wednesday, 4 September 2019

AAA Woman

Yesterday I spent several minutes with my head against a brick wall in alley way near my flat with invisible tears rolling silently down my face. I phoned a friend. I didn't hear her pick up. When eventually her words filtered through to me I heard "I'm here. Just breathe. I'm here."


I've been trying to write "this" for a long while. The writing, deleting and re-writing of "this" has basically stopped me writing about so many things these past few years ... and I miss writing.  I cannot write about other things when my lens is "this" without sharing the "this." There is so much I want to share, but my voice has been stifled. I stifled myself. Fear shut me up. Not entirely sure what the fear is, but I guess bottom line it's being seen as incapable, less than, more than, too much, not enough, vulnerable,

Transparency. Visibility. Truth. Real. Raw. I kind of love those things, but in "this" it's hard. Bear with me.

Here goes.

About eighteen months ago I began to break. The cracks had been showing for some time, years really, but by early spring 2018 it was a full on crumble with chunks falling off here and there. Even if you know me you might not have seen it. I'm good like that. I'm a masking queen. The mask even fooled me. Sort of. Not really. I began to truly see the mask for what it was in a mirror. The mirror being a little girl I used to look after during 2016 and 2017. She reminded me of me some how. Then I had memories of being her age and younger. Wild and fey and otherworldly. Sobbing and shouting. Dancing and drawing. Telling endless imaginative tales. Little by little I began to realise why I felt like I understood her so well. Odd. Shining bright. On a very different spectrum.

At the beginning of May  2018 I was persuaded to go to the doctor. "I just want to be referred and have the diagnosis," I said, laying out all the evidence collated so far. "It'll help, but everything is fine," I masked. "Don't worry I'm ok," I lied.

When I relayed the above to my son and my closest friends  I swear they did a collective facepalm and eye roll. Then they did an intervention, to save me from myself. And as they held me, they explained it was time and that I really did need saving. They gently told me I had done nothing wrong, but that they saw how hard things were for me and that it was beyond the point of them standing back. I let them step in. They made several phone calls.  They sent me back to the doctors, with strict instructions. They all wrote sides and sides of A4 stating my needs and what they saw. They saved my home. That was the thing that had finally triggered the intervention, that and my son realising once he was at university my support system, the one that knew the real me, would be gone. I was one day away from eviction notice. It was that close. It was me reaching out and telling them I was in little spot of bother, but "honestly it's fine" that finally start the ball rolling.

And once that ball started to roll it went full pelt down the slippery slope I'd been trying to climb up all my life.

They continued to hold me and I came apart completely. Finally safe to break, I fucking broke. I came so undone I felt unrecognisable. Had I always been this helpless and incapable? Would I ever recover? Spinning out of control and off into the void. I was in the full nightmare of autistic burnout. It's basically a  complete nervous breakdown with extra special effects reserved for those of us on the spectrum. Apparently it happens to many of us woman with a late life diagnosis. It comes to those of us who have masked our way through childhood and have been unnoticed. Mine came in that peri-menopausal truth bomb of sorting my shit out. This was big ... and it undeniably needed sorting.

Battling every step of the way against my reality, disbelieving most of the time that I really need that much help, I know I tested the patience of my son and my friends. They spent day, weeks months, explaining and showing me how far from norm or easy things were for me. I couldn't really be that bad at stuff could I? Well yes you are, but it's not your fault. Over and over they reassured, but never veering from telling the truth. They had one agenda, getting me the help I needed. The help they knew I deserved. I rocked and cried. I masked and the damn thing fell off. I put it back on, but it was broken now. I shouted and ranted. I slept. And slept. And slept. And slept some more. And slowly I accepted that my lack of daily executive function was the reason my finances and my home were in complete and utter disarray.  I finally saw as they did that my earning capacity was severely limited at that time and had been since the very first, because I didn't know how to get help with the needs I didn't even know I had, and that that impacted on me using my strengths.

As the mask gradually became unpicked more and more, it became so apparent where and how I struggled hugely. The stims I had been suppressing were nigh on constant at times. The social agoraphobia I had always had went through the roof. The sensory overloading that was too much every now and then, was continually turned up to the max.  For two months I hardly got out of bed. Earplugs were in constantly. I couldn't shop. Where I was always a bit sketchy around food prep and routine, suddenly I became non-functioning when it came to the kitchen and couldn't process planning anything. Friends turned up with meals and bags of shopping. Support workers got me food parcels. At one point I remember a dear friend even checked in daily to make sure I'd eaten and to remind me.

Somehow I got out of bed and out of the flat to hold Red Tents, but everything else was put off. Somehow with strategies firmly in place and an understanding and loving sister crew I even managed the Red Tent at two festivals that summer. It was odd, in some ways I learned to manage certain things better, or at least differently, and but at the same time less and less was doable. It's hard to explain that one. Things I controlled or knew how to do as part of my "area of hyper-focus" and so called expertise I could still do relatively well, but everything else I needed my hand holding in, literally, and talking through step by step.

In the middle of all this I had six weeks with no money. Part of the intervention meant that two dear friends and support workers were now staving off every single company regarding unpaid bills, working out pay back, getting every discount going. They fought for me and gradually bit by things got clearer and light appeared at the end of the tunnel. After the years of juggling and muddling through plans were in place.

Having got me to into the clinical psychology and medical system, with an expected diagnosis of "moderately severe autism" from my doctor, they then helped me tackle the social care and benefits system. Through what seemed an endless dehumanising and soul destroying nightmare of dead ends and forms and phone calls, in which I would have given up alone, they fought for me to maintain autonomy over my "care plan". They helped me fight to retain some semblance of my business so that it wasn't sabotaged beyond my return. They banned me from attending assessments solo, because when I did I completely fucked up, naively, confusedly and compliantly, with a full honed autistic people pleasing masked performance. Instead they came and helped me tell my truth, the worst of the worst of it not the best of the best, with my tears and shame and verbal struggle and shutdown, to people who had no boxes for me to fit in and red tape held so high I couldn't jump over alone. They fought for me for nearly a year and got me the financial help I deserved.

In amongst all this friends have helped me de-clutter a bit. They have sat endlessly with me while I tried to figure out me. They have gone a long way to help me understand my particular brand of differently-abled.

So let tell you about me. The bit you don't know and don't see. Well you probably will now cos I'm out.

I am autistic. I don't have it. I've always been it. I won't ever not be it. It's me. My brain is neuro-divergent and works remarkably and ingeniously in its own way of weird.

My parents told me once that they thought I was autistic when I was little. I hated to be touched and picked up, even when a tiny babe. This was put down at the time to my birth story, operations, lack of parental contact and a long hospital stay. I cried a lot. Then from about six months I would only sit on someone's lap if they had a book open. When the story was done and the book shut I would need out. They used to read to me to get a cuddle from me. I said "no" to everything. It was my go to word. Defiant and fist clenched. I learned to read aged three, and writing was pretty hot on the heels.  I got expelled from pre-school for being constantly disruptive, running amok, and being too bored and way past the making pictures by sticking on bits of macaroni. I kicked up quite a fuss about the stupid pasta pics and my mother was asked never to bring me back. I did do puzzles though. A lot of puzzles. Apparently I did them efficiently, face down, green side up. When I was six I my granddad bought me a puzzle I still have. It's 1500 pieces. I did that one face up.

Then religion and god and obeying and patriarchy hit my life full force. And somehow in amongst that and being academically fine I went undiagnosed. The hours of choking sobs and breath denying tantrums forced into some kind of submission, and it seemed like I was finally conforming to normality. They missed the bits I really struggled with under the banner of a harsh form of Christianity, and everything untoward was seen only within that framework and needing to obey, which happened because of strict corporal punishment.

The tantrums became spacing out. The fantasy worlds became escape valves.  The social awkwardness became a target for bullies and loneliness. Autism became my secret as I learned safety in compliance, and I observed and acted my way through every confusing situation and every confrontation, on into teenage years. But it wasn't right. I remember my dad saying often that for someone so highly intelligent I sure lacked common sense. I guess looking back that was my lack of executive functioning and autistic naivety showing. Diagnosed with depression and put on tablets, I bucked again, knowing it wasn't that, but something else.  I became challenging and defiant. The survival instinct kicked in, the part that knew something was so wrong, but I couldn't put my finger on it. The more I questioned morally and spiritually, the more I was clamped down on. Until at age seventeen I had what I know now to be my first autistic burnout. I broke. I was diagnosed with nervous exhaustion.

Anyway without this becoming an epic ramble, of my whole life, which went from one crisis to another, never quite getting it together, I suspected and kind of did a low level acceptance that I might be on the spectrum about ten years ago. I then figured, oh well, I can still make it all work without needing to go there. Just work harder, just try more.

I have however, over the last year, had to review the ensuing muddle, the leaving home, the destructive spiral, the harmful relationships, the lost friendships, the chaos, the inability to stick at things or see plans through, my mothering and my life path choices through the lens of autism. I see how each step was defined unknowingly by it, and by the invisibility of it. I see someone with sheer willpower and courage surviving. I see a determination to fix the broken, trying for years, and succeeding to a certain extent. Then I see someone finally realising they were trying to fix the unfixable, pushing boulders up hill like Sisyphus and running out of steam into exhaustion, eventually realising that actually it was something else all along. It was like realising I had been running a marathon and no-one had told me my legs weren't like everyone else's. What they also didn't tell me was that I might just have wings.

So here is what I have learned I have learned about me.

The dictionary says autism is a "developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour."

What the dictionary doesn't say is that it so unique to each individual, that it's not fair to generalise or dismiss. There are a number of  points for diagnosis, and for some the symptoms affect them mildly, and for others it is truly debilitating and they need intense lifelong care. Some see their autism as a gift, while it's hard that for some, and indeed their families looking after and observing them, to see it this way. It seems to me that there are many indicators and co-morbid conditions that come under the autism umbrella, but the experience can be vastly different. It's true, there are difficulties in communication, understanding and interpretation even though how that presents differs. The brain filters input differently, and often there are sensory difficulties. The brain can get caught up in restrictive thoughts and action loops, seeking reassurance in routine or finding comfort in patterns and meanings. What is also not often known is that the outdated labels of high functioning or low functioning really don't serve well for those labelled, as they give no indication of the amount of stress someone is under at any time.

My version of autism is made up of a few classics and some co-morbid presentations. I'll write more on these later, but this blog post is already so long, so a list will do for starters. Social anxiety; sensory processing disorder; autistic inertia; stimming; obsessive or ritualistic behaviour; difficulties with transitions; hyper focus at the expense of other things; lack of daily executive functioning; rigid thinking; meltdowns and shutdowns are my indicators, along with a lifelong dollop of demand avoidance, or demand anxiety, and a sprinkling of maladaptive day dreaming disorder.

Although somewhat hampered in life by much of this, indeed my ability to earn money, manage my time, organise life basics and invest in relationships are a bit messed because of it, somehow much of these things are also my strengths. My ability to hyper focus means hours and days of painstaking research. My rigid thinking means I sometimes don't give up and determinedly carry on with things which I see serving myself and others.  My years unknowingly, yet fixedly, observing human behaviour in order to mask, means I see things others don't sometimes. My brain seeking order and connections in patterns, symbols and words, on many levels at once at computer like high speeds, means I see the underlying threads for myself and others in dreams, life stories, journeys, magick and mythologies really quickly.  Admittedly I miss the dots altogether at times, but some types of dots I just run from one to the other in a thought stream.  My sensory needs and desire for perfect symmetry and colour coordination means the sacred spaces I set up are truly felt by others, and powerfully so. The detailed imagination that dives into a daydreaming disorder is also there when I create meditations, visualisations, energetic matrixes and pathworkings. Holding ceremony and rites of passage are enriched by my deep experiential knowing and real time energetic understanding of ritual and transition. To feel and sense the world so intensely means I not only sense the subtleties of this one, but have had a lifelong sense of the Otherworld too. I see the overarching big picture and the minute details too, yes I miss the entire middle part mostly, often the human real life bit too, but universal and microscopic bits, I've got it. All these things are my skills, and perhaps would not be so if I was not autistic. Who knows. I also know truly that my search for self, my search for voice, expression and autonomy has led me down the path of women's rights and a different, much needed, spirituality, than if I had not been brought up the way I had and with the unique lens I still have. And for that I'm grateful, for it has led me to be insightful, compassionate, passionate, self educated, and seeking autonomy, expression and voice for many many woman and minorities.

I'm learning to be unashamedly more me each day. I'm learning to be proactive about my needs. I'm learning to say "no" or "I can't right now". I'm learning to keep people at a distance who don't get it or negate my challenges. I'm learning to avoid people who see me as weak or easily manipulated because I struggle at times. I'm also learning to say a proud "damn, I'm really good at that".

I'm in a better place. And as my dear friend Forest says, herself an autistic ambassador and an adult meltdown coach, the "autistic crisis" that often happens in late life diagnosis lasts about three years. She says I have whizzed through the worst in a way she's not seen before. Now I'm at the stage of levelling out a little, finding out what is trauma related and what is autism, because unfortunately years of masking and trying to cope in a world I don't always understand or is way too sensory harsh for me, means, like many autists, that I suffer with trauma symptoms too. Picking apart that is hard and ongoing, but also healing and relieving.

So here I am. The soup that was caterpillar, in a cocoon of sorts, is finding it's imaginal cells and sees butterfly me at the end of tunnel. I'm not sure if mixing metaphors is a skill here, but hey whatever!

Anyway. I'm writing again. As I descended into the burnout I stopped writing and I grieved the loss of it so. And yey! I'm painting again. I stopped years ago, frozen and scared I just couldn't, and I can't tell you what if feels like to have that outlet back in my life. I have friendships deepening because I'm not hiding and holding everyone at a distance in case they spot my inadequacies or judge the clutter and chaos behind the scenes.

Which brings me back to the incident I started with. Because I can reach out now and be honest I was able to attempt something that I was wobbling about. It didn't go quite right and I began to meltdown, then shutdown. I had someone who knew exactly what was going on on the other end of the phone without me even speaking. As I waved in and out of panic and consciousness, my dear friend talked me away from that wall, then out of that alleyway and all the way home. I managed to have time out, a cup of tea, gather myself. Yeah I missed the train I was trying to get to and was late to meet another friend, but that friend also knows about me, so was understandingly cool with it, and an hour later I made it down the road and to the train without a hitch. I may have crashed out exhausted the instant I got in my seat and slept all the way to Winchester, waking up as it was getting into the station, but I showed up.

And that's it really. I'm committed to showing up as I am ... a "Triple A" woman.

Authentic. Awesome. Autistic

Heidi x

First started on 4th August and finished off on 4th September.
Thanks from the depths of my heart to those of you that got me through. You know who you are.