It’s been a long time since I sat down and wrote something. So long that I wondered whether I still possessed the ability.
My life has changed a lot over the last couple of years. I got out of an abusive relationship, found a place to live. Started to live in a very real sense. After years of being who others wanted me to be I began to discover who I was.
I discovered–perhaps that should be re-discovered–a love of art and made the time to explore and indulge this growing passion. Regular visits to galleries and exhibitions punctuated my own creative exercises, drawing and painting, as I quickly realised that my desire was to build up my own visual arts practice.
That continues to develop, and I’m certainly blessed with the most wonderful collection of friends who offer support and advice. As this interest has risen I’ve found that one casualty–the other end of the seesaw–was my long-established interest in programming.
I’m not sure if that reached its natural conclusion and faded after more than thirty years, or if it was affected by the severe mental health problems I’ve endured since leaving the toxic situation I had been in. It doesn’t actually matter.
My life has reached a point where I feel pulled towards a new destination. The road I’m on branches here, and the path I expected to take no longer calls to me. I’m not sure where my steps will take me from now on, but alongside trepidation at the prospect of upheaval I am feeling excited and eager to explore new lands.
Being both impulsive and risk-averse, I feel conflicting urges to simply jump in feet first while also planning every step in careful detail. Because I have commitments I’m taking the careful option and researching my choices. I’m working on keeping my existing career going while I first explore and then build an alternative, and then I plan to transition from one to the other.
It might not all work out, but I’m taking the advice of Neil Gaiman in his book Art Matters. To “make good art” for sure, but also to imagine my goal as a distant mountain and whenever I’m not sure which way to go, to make sure I’m heading towards that mountain.
In the last year I have sold an artwork, and I’ve had work exhibited. I’ve been lucky, but then to some extent we make our own luck. I’d love to exhibit and sell more work, but more than that I want to make more art. There’s joy in seeing my work appreciated, but the most joy comes from the act of creation itself.
Reaching this turning point has been difficult, tumultuous. I’ve struggled to rekindle a sense of purpose, but there’s direction in my life once again and it’s not one I would ever have imagined even just a few years ago. I’ve changed and that change has unlocked the door to a different world, one in which I feel I belong. All that remains is to build a home there for myself.
Funny old week. Funny old life, actually, and no mistake. I mean, it really brings it home to you, brings you down to earth with a jolt that might even knock some sense into your tired old grey matter, my girl.
It’s all so… Normal, I guess. No, that’s not it. Not what I meant. Close but no cigar, as they say. Whoever “they” might be. Did you ever wonder about “them”, wonder why or even how they say so much and everybody knows what they’ve said, but nobody knows who they are?
I did. I wondered. Sat awake nights thinking about it. About lots of the things people say. I bet most of the ones who’ve said things to me over the years don’t even remember half of what they said. Not half. Probably not even a tenth of the words they casually tossed at me. Like you’d throw scraps to a dog.
But that was better than the ones who aimed sharp words in place of stones. Teasing they called it. Horrible word. Dressing up their malice in bright clothes to make believe it was fun. I think it was fun for them. Fun to point at the odd one, make sure she knew she was on the outside.
“Sticks and stones” is what I got told when I objected. “Words can’t hurt you.” Those words right there hurt me even more because they told me I was alone.
Being alone. It is my normal, I’m used to it. Everybody leaves me in the end. Still, on the bright side if I’m on my own then there’s nobody there to hurt me more. Just me and my past, strolling hand in hand down memory lane.
Yeah, a dead-end street, that. Past the gutted wrecks and garbage, scabrous walls with the remains of graffiti. Don’t look too closely at where you’re treading, avoid the eyes that peer from shadows.
I remember when all this was trees, when the sun shone and I would run around, laughing. But that was before. You know they say you can never go back? Them again, they get about. Never go back. You want to know why I can’t go back? Because I never managed to leave.
The old home town, you wouldn’t recognise it. All that time, all those lives, gone. Dark now.
Yeah, funny old week, like I said. Being close to Death will do that, you know? All those thoughts of mortality, all that pent-up grief, all the weight of realisation that you don’t deserve to be the one left.
I should ask them why, next time they’re around. Who knows, maybe this time they’ll tell me.
Anyway, I’m doing fine. Thanks for asking. That’s what I’m supposed to say, right?
I’m contacting you as one of your constituents [address redacted] because I have grave concerns regarding the handling of the UK’s withdrawal from the EU.
My daughter is [age redacted] and has been living in Sweden for about 18 months with her Swedish partner. [Personal details redacted] the continuing uncertainty regarding her status as a UK national living in a EU country after the 29th March is causing her immense distress. Nobody, not the Swedish authorities and certainly not the UK government (it seems) are able to provide guidance as to what will happen to her.
I also have concerns regarding the preservation of the Good Friday Agreement in the event that the UK does not manage to avoid coming to the end of the withdrawal period without an agreement in place. I remember all too well the IRA mainland bombing campaign, the bombings in Manchester and Warrington especially since I grew up near Wigan and my father worked in the city centre of Manchester in a street that saw damage from that blast. I rightly fear a return to those days if the peace agreement that has lasted half my life is not protected.
My feelings about the unutterable folly of Brexit aside, I urge you and your colleagues in parliament to seek a rapid conclusion to this sorry episode so that we can all finally have some stability in our lives. After promising strength and stability, Theresa May triggered Article 50 without any clear idea of what our future relationship with the EU would look like, and she has led the UK into some of the most turbulent times I’ve experienced in my 45 years. I am watching in dismay as our global reputation sinks below the waves that surround us.
The past two and a bit years since the referendum have been truly awful. I’ve felt constant anxiety and I’m not sure I feel like I belong in this country given the isolationist direction in which it is heading. I have ties of friendship and family across Europe (and beyond) and having my EU citizenship taken from me against my will feels like a betrayal, and not one I think I can easily forgive.
I watch the night approach with wary eyes, The time when legion tiny fears with bold Defiance coalesce. I bate my cries, While deep in strangled guts my blood runs cold.
A thousand icy raindrops trickle down The arching column of my naked spine And pool their leaden weight: wishes drown Bequeathing butterflies with aim malign.
In fields of dreams run nightmares, pounding hooves A drummed tattoo that shakes the shadow ground Releasing wraiths: their terrifying moves Sketch promised horrors, banshee screams resound
Until the golden light of dawn brings calm: I wipe my fevered brow with sunshine's balm.
Although it’s only recently I’ve been hearing the term masking — the first time I can remember was in conversation with my very dear friend Patricia — I didn’t need to have it explained.
Putting on the metaphorical mask, adopting that persona, playing that role…
Oh yes, I know what that’s all about. Metaphors might be intangible but they are real. My whole life was an attempt to do what people around me wanted. To be who they wanted and expected me to be. The perfect child, the model student, the star employee, the ideal spouse.
In any human social group there is pressure to fit in, to conform so that you are accepted as one of the group. Most people adapt their behaviour depending on where they are or who they’re with, but these aren’t masks: they’re fine-tuning. It’s like adjusting the volume on the TV but keeping it tuned to the same channel.
Masking isn’t like that. Masking is attempting to put on a whole new persona. It’s method acting where you become the part you’re playing. Your character is authored by the people around you, it’s not your own creation. You’re dancing to somebody else’s tune.
While it can be very convincing — some autistic people are talented professional actors — when you’re filtering every word, every gesture, every reaction through that mask it becomes exhausting. And you don’t get to exit stage left and nip backstage for a breather. You’re in character almost every waking moment.
One danger of adopting a character so completely is that you can lose touch with yourself. You become so accustomed to acting the part that you blur the boundaries between real and pretend as you strive to become the mask. It’s a long road back from that place.
Being something, someone, that you’re not carries a price. It causes mental stress as you work to suppress your instinctive behaviours and reactions in favour of the ones that allow you to fit in. The threats and fear that drive the process — fear of failure, of ridicule or abusive harm — are very real and cause harm in the medium to long term.
This driving force is powerful: it has to be to push us so hard and so far. And the result — fitting in, appearing to be like our peers — might sound like a reasonable goal. It’s the aim of interventions like ABA and other behaviourism-based therapies. But regardless of whether it’s driven by a practitioner or by peer pressure it can cause deep, lasting trauma.
I didn’t only grow up autistic (even if I wasn’t aware of the fact): I also grew up transgender. To me, the parallels with masking as an autistic person are very clear: I, an autistic female, was expected to appear to be a neurotypical male.
I can’t easily separate the two aspects of my being: my gender and my neurotype. The teasing and bullying I went through was because I didn’t act NT enough or male enough to match peer expectations. I tried. I watched people around me, studied them, tried to copy how they acted. Constructed my mask to hide behind.
Being autistic isn’t about the list of symptoms in DSM or ICD – that’s just the medical establishment’s way of drawing neat lines around a bunch of us and sticking a label on the resulting box.
Being autistic is how I experience the world and react to it. That might cause certain observable effects that get written down and turned into a diagnosis, but living it is something that can’t be captured in words because an autistic frame of reference is different from a neurotypical one.
Autistic people can often recognise each other. We pick up on signs and cues that exist below the level of conscious awareness: we feel that pull of recognition when we see ourselves reflected in others. Because we can relate to each other through shared experiences, our similar responses to situations, we often feel more comfortable and at ease in each other’s company.
Recognising my own reflection, seeing myself in others and having them see themselves in me, is very familiar to me from meeting other autistics. But it’s equally applicable to my gender.
For about as long as I can remember it was other girls and women I saw as mirrors of myself. I could never relate strongly to male peers: I was never able to see myself as belonging there.
Just as being autistic isn’t a list of symptoms from the diagnostic manual, so being a woman isn’t a list of attributes either. There are such things as gender roles and traits, but they are a consequence of gender, not its cause or essence.
I’m not autistic because I struggle in social situations or because I was echolalic and frustratingly literal as a child: that is inverting cause and effect. I am autistic whether or not the signs are visible to others. I’m just as autistic when I’m chatting to a colleague at work as when I dance and flap.
Likewise, I’m not a woman because I have breasts and hips, or because I cry over emotional movies, or because I wear dresses sometimes. Those don’t define my gender, they are simply an expression of it. I was just as female before my body started to develop, I’m just as female in jeans and tee-shirt toting a toolbox.
Neither my neurotype nor my gender are things I had any choice about: they’re just the way I am. Trying to force me to be something or someone I’m not — conversion therapy by any other name — doesn’t work and causes me harm. I can act out a role under duress with a certain degree of success, but it takes a toll on me.
Ultimately I had to take off the mask. The strain of performing constantly broke me. Not all the damage it did can ever be healed: there is some baggage I will always carry with me.
But my burden is small compared to what it used to be, my steps are light. And the tune I dance to is my own.
I thought I was free. I thought I could cope with limited contact, dealing with my ex occasionally. Trying to be amicable, even helpful. I was wrong. Read more ›
I’d thought about leaving so many times. Going back through some old posts last night, even back to when I first started blogging, it was abundantly clear to me that I had been feeling depressed, lonely and trapped for years.
It was something I discussed occasionally with people I trusted. Not that I had many of those. But I was always more scared by the uncertainty of the unknown than I was of remaining somewhere that didn’t feel like a home. My fears always drove me back.
I tried. But it’s hard when the love you once had has been replaced by fear. Too many angry outbursts, too many times when my needs were dismissed, too many times when my anxiety reached overload. I tried to explain but when I never knew how what I said would be received it was impossible to be completely open and candid.
Even when I did manage to speak up, the import of what I was saying became lost in translation. These weren’t shared feelings or experiences; I might as well have been speaking a foreign language. Situations where my daughter or neurodivergent friends would grasp it immediately, not need it to be spelled out in detail.
In the end it had become obvious that living in that place with that person was harming me. Day by day my mental health was declining with anxiety and depression making it difficult to function. I was struggling with work, I was struggling with self care. Well, not just struggling: I was failing.
I knew the signs. I’d been through similar times before although every time it happened it brought me further down, hurt me more, killed another piece of my soul. So this time I asked for help. I went to my doctor, I referred myself for counselling. And I talked at length with my daughter.
At my second counselling session I all but broke down in tears as I described how I felt, how a steady drip, drip, drip of teasing, controlling behaviour, threats (even when later retracted) and aggressive actions had built up to the point where I didn’t feel safe. It doesn’t matter what the motivation was, whether harm was intended: it was emotional abuse and it did cause harm.
I explained how I was afraid of losing my job because my mind was in too much turmoil to focus. I explained how every time I tried to think of what I needed to do to get away I quickly became overwhelmed with the magnitude of it all.
My counsellor was brilliant. She helped me organise my thoughts so that right in the middle was my goal, “To Get Out” and around it were the factors that I needed to address.
The actual brainstorming chart my counsellor made in our session
I came out of there feeling enabled, that this was something I could achieve. I phoned my boss at work and explained everything (and I mean everything) to him. Because I was that anxious about it I came straight out and asked him if I still had a job to get back to: he reassured me. I felt so much better after that.
In conjunction with my doctor I worked out a schedule that would get me back to working regularly, and my boss was very supportive, saying that I should do what I had to do, take as much time as I needed, and asking if there was anything I needed from him or the company.
So, knowing my job was secure I went to my bank to see about taking out a loan for setting up a new home, which went through without a hitch giving me the funds I needed to cover fees and buying furniture.
My daughter helped me look for a new place, and we made a shortlist. I prepared myself and managed to phone up and make appointments with the letting agents to view two of them, the first on the very next day which was a Saturday. To cut a long story short we both loved the first place we looked at and I started the process of securing the lease.
Just two weeks after that viewing I got the keys and moved in to the place I’m sitting in now, a month later. My home. And it really does feel like home. It’s a lovely flat in a beautiful location, but more than that it is a nurturing environment where I feel comfortable and safe.
To borrow the most apt of phrases, it is as if I have come through an unseen metaphorical door. As if I escaped from a cage to live in freedom. My counsellor was in shock at the speed of the change in me: she had never before seen somebody go from tears and hopelessness in one session to joy and optimism in the next.
I’m not the kind of person who worries that it might all be a dream and on waking I’d be back to the harmful existence I had before. I know this is real, that this is my new life. It feels like a rebirth, even more so than my gender transition. I’ve broken the shell that confined me, emerged from the egg and I’m stretching my wings.
I’ve said before that I never managed to live independently. I’m not independent now. Oh, I can feed and wash and clothe myself, and I can do the things that need doing around my home. But I also have a network of friends who I can turn to if I need support. I live by myself but I am not alone.
My friends on Facebook and the people I work with could see how happy I was when I got out of the situation I was living in: a relationship that was ultimately toxic and slowly killing me. I got my drive back, my motivation. I started to enjoy working again. I got up in the mornings feeling ready for the day.
And then, a week ago today, I was sitting here. Well, actually sitting and feeling restless, then getting up and pacing, then trying to sit again. My thoughts going round and round: should I? Should I not? A dilemma: do I tell someone how I feel? Is that fair to them if they don’t feel the same way? Might I ruin a friendship? Could it even work?
I talked to my daughter. I talked to a dear friend. I knew what I wanted to do, but I needed to work up the courage to take that chance. The emotions were so powerful that I was overwhelmed. But in the end I sent my message.
And then I waited. Minutes have never passed so slowly, a lifetime between each tick of the clock. They responded! This person I have fallen so much in love with loves me too!!! And so I am flying, lifted high by the joy of love.
Two people who felt some spark between them, who are both starting to grow and learn who they can be at a point in their lives when that had no longer seemed possible. It’s a wonderful experience to be sure, but how much better it is, how much more meaningful and joyful when there is somebody with whom to share the journey.
A personal exploration of autism from a brother’s perspective, including family relationships, philosophy, neuroscience, mental health history and ethics
It’s been a long time since I sat down and wrote something. So long that I wondered whether I still possessed the ability.
I want to sink my sharp nails
My Autistic Dance 