Month: December 2018

That Was The Year That Was—2018 in Review

That Was The Year That Was—2018 in Review

by alexforshaw ♥ 2 Comments

The past twelve months seem to have passed quickly as I sit here looking back over them. I’ve been places both real and figurative, seen amazing sights and met some lovely people. There have been highs I could scarcely have dreamed of, and lows I would rather not dwell on.

In January I travelled to Sweden for the first time to visit my daughter who had moved there the previous summer. We had a lovely time hanging out together and I got to indulge my tea habit.

Leaving her to return home again was a bit of a wrench, but then later in January I went to my first spider show (SEAS–South East Arachnid Show) with dear friends Gemma and Dom. I didn’t indulge myself but did help a certain person acquire four tarantulas.

Fast forward to March and, wearing my Autistic Inclusive Meets director hat, a trip to Parliament with Emma for the launch of the Westminster Commission on Autism’s report into harmful fake autism cures. As you can see we were completely in awe of our surroundings and took it all very seriously.

May brought a visit to the British Tarantula Society’s annual show in Warwickshire and the acquisition of my first tarantula. Not bad for a woman who used to be afraid to get into bed if she saw a spider on the bedroom wall or ceiling.

By the end of June I was counting down days, eagerly anticipating my upcoming visit to Canada and the opportunity to meet and hang out with my beloved friend Patricia in person.

We had an amazing time over the two weeks I was there, getting to travel across the Maritime provinces, visit some wonderful places and meet lovely fellow-neurodivergent people. I completely fell in love with Canada.

It almost broke my heart to leave and come back home: how I cried. But I’d not even been back two days when my daughter arrived from Sweden for a visit with her boyfriend. It was fantastic seeing her again and we got to do some fun things together including visits to Stonehenge and the Natural History Museum.

Unfortunately, after her visit burnout hit me hard along with PTSD from the relationship I talked about in my previous post: I ended up being off work for the best part of two months before starting to recover towards the end of the year. It was a difficult time with several episodes of self-harm.

In the middle of September, while I was off work, I got to visit Stroud and meet up with my dear friend Sonia before going to see the fabulous play The Duck by Rhi Lloyd-Williams. (Note to readers: the play will be touring at some point in 2019 and I highly recommend going to see it.)

I’d been having something of a midlife crisis in the midst of my mental illness, and realised that I needed to make space in my life for artistic expression. I bought myself a copy of Neil Gaiman’s Art Matters, illustrated by Chris Riddell, and found it truly inspiring.

It didn’t hurt one bit to get these encouraging words from Neil himself either. Feeling inspired, I got an additional boost when invited to be part of the launch event for close friend Jon Adams’ charity, Flow Observatorium.

I was also deeply honoured when Sonia asked if I would read a message from her since she wouldn’t be able to attend. That month, September, also saw me turn forty five and was a turning point in my mental illness as I began to recover.

October saw me teaming up with Gemma to welcome the newest regeneration of our favourite Time Lord: we were both agreed that we loved the Thirteenth Doctor as portrayed by Jodie Whittaker.

Less than a week later and I was meeting another lovely friend, Naomi, in a field down in Sussex for the re-enactment of the Battle of Hastings at Battle Abbey. Great day out that would be hard to top.

Having said that, November excelled itself as I went to the O2 Arena to see Florence + The Machine live in concert. Wow! Utterly breathtaking, and an experience I won’t forget in a hurry. The atmosphere was so positive that I was buzzing for days.

Rounding off the month, I got to visit Tate Modern and experience some exceptional works of modern art, including some de Stijl paintings by van Doesburg and Mondrian, a whole room of Mark Rothko, and so much more. That day was completed wonderfully with a meal in the company of Emma and Amy, fellow directors of AIM.

Into December now, as a couple of weeks later I was back up in London for a meeting with a PhD research student from France, following which I bumped into dear friend Jon. We had a good chat before I left to explore the National Gallery, just off Trafalgar Square.

It’s no exaggeration to say I was in heaven! Over the course of nearly four hours I wandered the galleries, lost in a kind of rapture. It’s hard to single out individual works, but the four van Gogh paintings on display were beyond comparison! I stood in front of each of them, examining the brushwork, feeling the emotion laid onto the canvas along with the oil paint.

And so at last, with no little conceit, I finish up my review of the year by placing a painting of my own alongside the genius of Vincent. Not for comparison, not for any other reason than this: 2018 was the year I finally felt comfortable calling myself an artist. And that makes it a good year.

When Care is Really Control

When Care is Really Control

by alexforshaw ♥ 8 Comments

As an autistic woman myself, I know I’m not alone in seeking the security of a stable, dependable home life. I sucked badly at taking care of myself when I first lived away from home at university: I was intimidated by communal cooking and laundry areas.

The pattern repeated when I moved away for work: my awful, almost-non-existent organisational skills left me struggling with all manner of domestic tasks from my finances to making sure I had food and clean clothes. I was pretty much living off take-aways when I met someone.

In my first committed relationship we set up home together, had a daughter and got married so quickly that it’s a bit of a blur in my memories. With hindsight, we weren’t well-matched and the marriage didn’t last. I think we both had breakdowns after it imploded and we went our separate ways.

Within only a few months I found myself in another relationship. You might be thinking “rebound”. Looking back, I am thinking “rebound”. But at the time I blithely dismissed concerns that I was rushing headlong into things (again) and declared that it was true love.

The marriage (for that’s what we did in our second year together) appeared to start well. Despite my partner’s occasional displays of drunken aggression, sometimes in public, we got along pretty well. Or so I thought, but in reality I was adapting to minimise the friction.

Over time I let my spouse manage all the household finances, cook the meals, choose how the home was decorated. In return I got the illusion of security and stability. I say illusion because there was always the implicit threat of being thrown out, always some reason why I couldn’t become a joint tenant.

My ties to family and friends weakened as I gradually lost contact, being made to feel guilty for spending any time with them rather than my spouse. When we went out I’d often be left sat on my own while they went around socialising, while if I ever did the same I got accused of spending no time with them.

I became well-versed in my failings due to having them pointed out regularly: how I couldn’t cope on my own, and how I’d have ended up in an awful mess if it hadn’t been for my spouse. I actually felt grateful for it, for their control over my life, making order out of the chaos.

On a number of occasions they got drunkenly argumentative and locked me out, only to be extra nice the next day after allowing me back in. A couple of times I tried to leave, spent a day or two sofa-surfing at mutual friends’ places before giving in to the pleas for me to return, promising it would be different.

A couple of times I tried to kill myself, washing down handfuls of pills with whisky or other alcohol, but I always ended up vomiting them out and surviving.

By the end I was spending a lot of time in a little box room on my own. When I felt especially threatened I would wedge a chair under the door handle to prevent my spouse from getting in, and I’d cower in there while they hammered on the door and shouted threats.

All this and I still couldn’t leave. I no longer believed I was being cared for, but having any home seemed preferable to the unknown chaos of life on my own. There were just so many things I would have to do to get away that trying to think about it overwhelmed me.

I was in mental health crisis, on medication, unable to work and suffering frequent panic attacks. My counsellor helped by guiding me through the process of organising my thoughts into an exit plan. My daughter helped me find a place to live, and assisted with setting up home there.

Things aren’t perfect, even more than a year and a half later. The emotional abuse over those years has seriously damaged my mental health and I have complex PTSD, frequent suicidal thoughts, and a bunch of new scars from self-harm.

But I also have support, and perhaps more importantly I have belief in myself. I know now that I can survive life on my own. That’s not to say I don’t struggle, and keeping on top of bills and household chores will always be difficult.

It’s tempting to let others manage aspects of your life in the belief that they will care for you. But all too often this dependency forms the basis of control, of abuse, and that is far from healthy. It took me a long time to recognise the signs, and I let my judgement be swayed by the person who was abusing me because they claimed to be looking after me and had undermined my confidence in myself: I believed their words over the evidence of my own eyes.

We autistic people are particularly at risk from those who would take advantage of us, abuse the trust we place in them and end up harming us. We become dependent on carers. Look out for warning signs like these:

  • If you find yourself making excuses for your partner or carer when others question the way they treat you.
  • If they regularly act aggressively towards you, shout at you, or otherwise make you feel scared of them, make you afraid to challenge them.
  • If they often tell you what you can or can’t do.
  • If they alternate between being cruel or nasty towards you, and apologising and being extra nice for a while.
  • If you frequently get criticised, teased or called hurtful names: if they keep finding fault with things you do or say.
  • If they make you feel guilty for spending time with other people, or make you feel bad if you interact with others online: if they isolate you from people you used to have around you.
  • If you aren’t allowed access to your own money, or don’t have a say in things you buy or do.
My Mother

My Mother

by alexforshaw ♥ 2 Comments 
Where are you now, my mother?
Was death the end you wanted,
Or does the pain of leaving
Echo still beyond the grave?
Where did you go, my mother?
My briny tears have yet to
Fill the aching void where once
Your life sang oh! so brightly.
Why did you leave, my mother?
You were taken in the night.
So many things I never
Had the chance to share with you.
Where are you now, my mother?
Did you ever know the love
I carry still but could not
Say the words to give to you?
Sound Analysis – #Autistic December 7/31

Sound Analysis – #Autistic December 7/31

by alexforshaw ♥ 2 Comments

I had another sensory problem at work today: I was taking part in a video-conference meeting and had to leave because I couldn’t follow the spoken words of a participant from the US.

I found that I was concentrating so hard on recognising each word I couldn’t work out the overall meaning of what he was saying. The effort was tiring: after about 5 minutes I couldn’t handle any more and had to leave.

It left me shaking and I had to go for a walk outside to calm myself. I tried to make sense of why I now have such problems to a much greater degree than I ever used to, but ultimately failed: I just don’t have the answer.

For the time being I think I’ll simply have to avoid such meetings. I’m due to see somebody next week for an assessment of my working environment, and perhaps between us we can arrive either at some solution or an accommodation that mitigates my sensory problems.

Don’t Let Me Be Misunderstood – #Autistic December 6/31

Don’t Let Me Be Misunderstood – #Autistic December 6/31

by alexforshaw ♥ 6 Comments

It’s hard to describe an experience to somebody who has little to compare it against. What would it be like to sense magnetic fields, or see the polarisation of light? How would it feel to be a cat?

You might speculate but there is no way to know. All you can do is imagine, drawing parallels with things you’ve seen or felt yourself. And it’s the same when somebody neurotypical tries to understand the experience of being autistic.

The same applies going the other way, of course. An autistic person like myself can never experience being neurotypical either. There’s even a name for this: the Double Empathy problem.

The thing is, while most of us autistics are all too aware that we experience the world differently to neurotypicals and that neurotypical assumptions about us can sometimes be wildly inaccurate, few neurotypicals have the equivalent insight.

This leads to misinterpretation of autistic behaviour when it’s viewed through that neurotypical lens. When all you see of something is what’s on the outside, you have to guess what’s going on inside based on what you’re familiar with. In this case, assuming that the causes or triggers are the same for autistics as for NTs.

We autistics are a minority neurotype. The consequence of this is that while we encounter NTs frequently, they don’t meet us nearly as often and don’t have the same opportunity to become familiar with our differences. We aren’t well understood, and that can lead to fear.

Filling that gap in understanding is so important, but there’s a communication barrier. How can we describe our internal experience in a way that neurotypical people can relate to without making it seem like a minor variation? That’s how we end up with misunderstandings like, “We’re all a bit autistic.”

I don’t have the answer. I don’t even know if there is an answer but I keep searching. There certainly is such a thing as an autistic experience because so many of us can relate to each other in ways that don’t happen between us and neurotypical people.

I’m autistic: I know how that feels. I can describe how it feels in ways that other autistics can relate to, but there’s always a frustrating gap in understanding with a neurotypical audience. The shorthand that works fine with others who share my neurotype loses meaning with those who have a different neurology.

My belief is that science alone–psychology, neuroscience and so on–probably won’t arrive at an answer any time soon. It’s going to require fresh approaches that break down the traditional barriers between disciplines to approach it from new directions.

Because communication lies at the heart of the problem it will undoubtedly need to involve those who specialise in those fields. Not just linguistics but all manner of communication: the domain of artists.

An over-reliance on words and repetition of established patterns makes new directions and new shapes of thought much more difficult: a poet or painter can capture and convey the feeling of an experience in a transcendent way.

Think of a simple experience: perhaps eating a chocolate. While the mechanics are important–body heat melting it, the action of chewing and swallowing, the workings of the taste buds and digestive system–they don’t tell you how it feels. There’s a whole level of description missing.

Bridging the communication gap will take a combined effort, a multi-disciplinary effort. New thinking is needed to break out from the confining paradigms we find ourselves with right now.

Still Waters – #Autistic December 5/31

Still Waters – #Autistic December 5/31

by alexforshaw ♥ 1 Comment

Still waters run deep

If I had a penny for every time I heard that phrase growing up…

My school reports are year after year of consistently high academic performance and hopes that I might participate more and develop socially. I was lucky to have a natural inclination and ability for learning: it compensated for and allowed me to “get away with” being socially awkward.

…consistently impressing with her quiet, conscientious approach and with the high standard of all her work.

Form Master, Midsummer Term 1989

A first-class report. […] She is very modest about her ability and must make sure she does not under-sell herself at interview next year.

Form Master, Midsummer Term 1990

Her consistent performances are exceptional. If she can develop her inter-personal skills more fully she will do very well indeed.

Headmaster, Midsummer Term 1991

You see, if I’d not been so capable academically my poor social skills would likely have been seen as more significant. As it was, doing well in my studies meant that my difficulties in other areas were overlooked or glossed over.

I said I was lucky, but the fact is that the highly-structured world of school masked the significant trouble I had navigating an environment like university that relied much more heavily on interactions with other people. My lack of a social network left me isolated and lacking the support I needed, and because I’d not been in any similar situations before I had no idea how to cope.

It left me with deep feelings of failure and shame: everyone had expected me to do well because that is what I had always done. I had tied my own measurement of my worth to that feedback, to those reports of how well I performed.

I let them all down.

I expected to face rejection: after all, I was valued for how well I did and I had just failed. It’s hard to explain how powerful the fear of rejection was, how ashamed I felt of failing.

How worthless I felt.

The echoes of that are still present, still affect me to this day. That was the point at which I shattered into the broken pieces that I work so hard to hold together.

I can mouth the empty words, say that I am worth something, but I don’t believe it. At heart I know I’m a failure: the proof’s there plain to see.

Those still waters, they really do run as deep as they say. And who knows what truly lies beneath that calm surface? For me it’s the wreck of the promise I once showed.