September 13, 2018 § 6 Comments
Photograph taken at Magdalen Road Studios with an art piece by Cristina Renfijo.
I love this blog space. It gives me room to stretch out and explore ideas I wouldn’t otherwise express. Ideas float about and when I’m ready I draw them in and knead them into shape on these pages.
I’ve written many blogs posts since I began The Other Side, and I’m immensely grateful to all of you who’ve kept me company along the way. So many voices, so much chatter – it’s a privilege to have your ear.
I want for a moment to consider the impact of social media on my life, and perhaps this will resonate. Though equally I expect I’ll get some flack for what I’m about to say. Autistic Twitter is a wonderful thing, but there’s a toxic underbelly to the platform which infects us all and enables hostility.
Some days I mainline Twitter – it is my ‘stim’ when I’m overloaded, it’s also been a huge support to me as an autistic person and in my art practice. Though I go through periods where I lose my Twitter voice, it’s been a good way to stay connected. Currently I’m finding it hard to speak.
Since 2011 I’ve enjoyed scrolling my timeline and remember such warm early conversations about autism and art. Twitter back then was like a gentle parlour game; we remembered to thank each other for mentions and when Friday came along we’d regularly break out the #ff’s. All that feels so very long ago. So much has changed.
There are still so many lovely people out there; good friendships and lasting connections, but the other day I saw an exchange that kind of broke me. There’ve always been scraps on Twitter. Autism has forever (it seems) been bitterly contested but we seem to have crossed a line, and this one threw me. Perhaps the effect is cumulative?
Or am I now at another point in the evolution of my autistic self? I know of other ‘battle weary’ autistics. Perhaps this is a thing.
It doesn’t really matter what the ‘ding dong’ was about now that I think about it (not that I’m belittling either side of the argument). It’s more to do with the shit we give one another online when we disagree. Two autistic people pitched against each other, sparks catching as quickly as tinder as their sensitivities collided. Sudden enemies – two people I’ve followed and enjoyed hearing from.
Suddenly I felt appalled. What have we become? Why can’t we just talk things through? I know it’s all way more complex than this, but this feels toxic, pervasive, infectious.
I’ll come back to a certain kind of advocacy when I’ve figured this out, but for now I’m done. Twitter isn’t the forum it once was.
We seem to use it to bash each other over the head, and I’m just not up for that.
I want to withdraw to a place of nuance and conversation. But that’s me wanting a lot. I’ll spend less time scrolling.
This blog feels like the place to be right now. I can be quiet. I can think my own thoughts more clearly. But when I think about the need for sanctuary my heart stops.
In my minds eye, the paintings of a talented young woman, who’s found sanctuary in the UK from a war torn country, suddenly appear.
I am both pulled about by my own privilege, and afraid of repressive impulses in humans.
If you follow my art practice you’ll know that I have good reason to be.
July 5, 2018 § 7 Comments
The title for this blog post is a quote which comes from an article published by Shape Arts called How to Get an Exhibition. It’s an article “adapted to suit disabled artists and sit alongside Shape’s own resources…”
I’ll quote a fuller excerpt,
“The art world is Social and I’m capitalising that because frankly you’re not getting anywhere making art in isolation. No-one is going to come knocking if no-one knows who you are. You have got to introduce yourself (and that won’t be welcome if you’re not a decent person), which brings me to…”
This is prefaced with advice about working cooperatively. Don’t be adversarial or a ‘user’, my term. It’s a wholesome tip, what can be so wrong? Well, consider the socially disabled. Yes – we do exist – though clearly we’re invisible to even wonderful disability arts organisations which are much beloved, like Shape.
So saddened and frustrated am I to see such output from a disability arts organisation that I’m moved to blog about it.
Autistic artists are unlikely to be ‘users’ or even adversarial – though our social behaviour might make us seem so because we are so easily misread. We are more likely to be trampled on by others using our ideas and making capital out of our social vulnerabilities than vice-versa.
The art world is Social – with a capital S – is a statement which tells you everything you need to know about about an environment which is excluding, at times toxic and frankly (to borrow the author’s tone) disabling for autistic artists.
There will of course be autistic artists out there making their work in isolation – that’s the point! It’s not necessarily a choice for us – though it is complicated.
It may be that some of us are without a network because this is what happens when you have a social disability. Another factor is that ‘isolation’ can be enabling on a creative level. Some of us don’t find collaborative working accessible and need ‘isolation’ of a certain kind to make our work. This can be usefully reframed as solitude – though our need for it can be unusual and profound.
It’s inappropriate to advise against isolation to a group who can’t help it – for whom it can be both a feature of creative life and/or a consequence of their disablement.
And not even the no-one will come knocking is the worst of this grisley finger wagging advice. Yes, we know. We’ve known this forever, thank you!
You have got to introduce yourself – gets right to the nub of things though. I’ve heard this before somewhere. The ‘get stuck in’ school of advice, which is about as useful as a kick in the teeth for those who live with levels of social anxiety often associated with social disability.
However, the worst is reserved for last.
I suspect there will be something truly sinister, about the quote marks around ‘decent person’ and the admonition about a lack of welcome, for the autistic reader. You have to unpack what this means and the assumptions buried within such a statement. ‘Decent person’ is here (I assume) someone who can perform neurological typicality (for want of a better phrase). A person who can show collaborative spirit and can demonstrate they are a team player. It means someone who can pass a neurotypical popularity test, which is essentially what most networking is about.
What if neurological challenge means you can’t remember names or faces, and can’t keep up with the alphas of this Social world. What if you can’t process interactions in the moment. The alphas shuffle according to criteria those with social disabilities often can’t fathom because they are whimsical and illogical, based on something we can’t see or touch. It is also the case that we often see too much. Where’s the advice about social ‘lying’?
Some of us can’t prove we’re ‘decent’ because the Social world disables us. So although it wasn’t intended that way, this is ableist and a worrying sign that autistic artists are still not visible in disability arts.
July 1, 2018 § 38 Comments
This post is about both ageing and masking. Masking can be a difficult subject as some autistics can’t mask their autism, and those of us who can often wish we didn’t have to, and yet we may depend on masking to get by. Masking overall is not really a choice though in some circumstances we can chose to unmask ourselves. We may also just be unmasked by circumstances – and this can be deeply confusing and humiliating. It is both a relative privilege and a survival strategy. Yet however important masking can be in mediating aspects of autistic challenge in neuro-normative spaces it is also pernicious in it’s effects on us.
Revealing autism and unmasking are not entirely the same thing in my view – and this is worth pointing out. One of the difficulties we face is that to talk about being autistic we must often use our masks and perform as neurotypicals. To ‘act autistic’ is another level of communication about who we are. Unmasking is a complex negotiation of self in relation to others which may need to take place over time and may never be a complete or finite entity.
Understanding and finding a balance in masking autism is a real challenge for me. I’d like to share aspects of my recent experiences. Please do feel free to comment – I’d love to know how other autistics manage this.
There’s been a huge amount for me to process lately. SO vast is the task of navigating the world as a relatively new autistic that at times I simply buffer. Some days I’m not exactly engaging with life – I’m beach-balling like my overstuffed laptop.
Someday soon I need to empty content. It’s reached that dangerous tipping point where the cursor acts up and jiggles uncontrollably. This is a sure sign of near laptop meltdown – I should delete or transfer as much as possible to an external hard drive.
And so it is with life. I’m clearing out cupboards – in the hope of making space to think more clearly and get through my days with more ease. In the area of clothing this feels vital. Less will be more surely? Garments that have lain around for years – high on promise and low on actual wearability – must go. I look at them with new eyes. They belong pre-diagnosis when I didn’t know myself. What versions of me hang therein? None I now recognise.
I put them in a bin bag ready for donation – crossing all my fingers. May they go to a good home! May their departure lighten my load! I want to stop all this damn buffering.
Just lately I’ve been coming up against my limitations in more tangible ways. The gaps in functioning provoked by some of my recent escapades have pushed me to my limits. This has been painful – more challenge in my life means facing my invisible disabilities head on. Adjustment is constant – there is no official support for my situation.
Also – I grow old.
I’m on a species of cusp so to speak. I’m in the run up to a brave new decade, and contemporary culture demands women declare each decade the new previous decade. We’re not allowed to age visibly without dismissal.
So as women we must join the race to be younger, more energetic, and ever more positive versions of ourselves than before if we don’t want to be deleted. If you’re a late diagnosed (masked) autistic woman it’s a double whammy as we’ve been invisible all along!
I simply feel old. This is desperately unfashionable, I do know this. I should be scaling mountains and learning to yodel! This is so never going to happen, in case of doubt.
As a woman of 25 I felt ancient too (at times). Being autistic makes for vast differences in perception and sensory experience – which is often plain exhausting at any age. I must remind myself that I may not always feel quite so compromised – I will eventually find some bounce back, I usually do.
But it’s the cross over in ageing with late diagnosed autism I’m running up against. My body is slower, and the gaps in functioning feel more solid somehow. I hit the wall ever sooner. My spoons simply do just run out.
How this relates to my newfound reluctance to ‘mask’ I don’t know, but the pain and humiliation around masking is greater since my diagnosis two years ago – I don’t want to mask anymore. Yet unmasking is not always practical or useful (let’s be honest here it’s not called privilege for nothing). I have so much left to do both creatively speaking and as a mother – all of which mean I must be out in the world.
I need a better strategy, but what?
In recent days I’ve rehearsed unmasking scenarios in my head for those brick wall moments. Unmasking on public transport for example (I now realise) requires a conversation. This is often beyond me in extremis and so I tend to push through.
At times can I barely keep my mask in place and deep sense of alienation haunts me during and after highly stressful situations. Revealing my autism might at least bring kindness and relief, I sometimes hope. Yet the risk that I’ll be met by miscomprehension and even cruelty (however casual) is great. Condescension, dismissal and denial are also common reactions. This is what makes masking a privilege.
It’s a negative feedback loop which can erode a person’s sense of self and self-worth, really it can.
This deep instinct to mask is brought about by fear. It’s an adaptation for social survival. So how exactly do we drop it?
Age should bring us wisdom passed down the generations.
But we’re both the lost and the pioneer generation – we have to work this out for ourselves. That’s tough – there’s no way round this.
I long to be kickass about masking, but this doesn’t really suit my personality. This would simply be another mask. As I write this I feel relief. One more pressure I can drop like a hot coal.
I want to end this post by focusing on the good stuff. We are making change happen as a community little by little.
Earlier this week I was met with the most extraordinary kindness in unmasking my autism to a new colleague – genuine dialogue can happen. Last week I also appeared on an exciting panel at Kent University, Autistic Women, Feminism and the Arts, with the most brilliant autistic women both masking and unmasked.
On an individual level for those who have masked to survive, masking, as I say in my introduction, is a daily negotiation. We shouldn’t underestimate the struggle this represents and the level of ignorance we face which often blocks us.
Campaigns to unmask ourselves are a wonderful thing, if this works for you. The potential for such dialogue to further our cause in the mainstream engenders hope in me. Such campaigns, at the very least, can rally us and strengthen us at both individual and community level. With luck it can open other minds to the challenges of being autistic via authentic voices.
But I want to say to those who may feel pressure and confusion after so very many years of masking – masking can be okay as a strategy. After a lifetime, you might not even know where masking begins and ends in your psyche. I myself am not sure about this. Habits and adaptations are etched into us over time.
Until we come up with something better masking is sometimes all we have.
Because I’m older I have to practice patience about wider change. It may not come in my lifetime but nothing will convince me that the neuro-revolution is not on its way.
May 16, 2018 § 28 Comments
It’s been a curious time – one of transitions, I guess. Spring weather and lighter nights coincide with reaching beyond the 2 year anniversary of my diagnosis of autism.
A decisive diagnosis of Asperger Syndrome came as a surprise, I expected equivocation and maybes’. Hidden disability is a tricky rogue, adept at fooling even the person who embodies and lives it. A subtle form of gaslighting is our daily bread. You look fine! You seem okay! Why can’t you do that? You did it yesterday…
These are the conversations we internalise and play on repeat, looping endlessly, until diagnosis day or the day/s self-identification kicks in (either is good in my book).
From this moment you can begin to deconstruct, understanding ever more the hows and whys of the daily struggle. Sometimes we wade through treacle, and sometimes we glide like swans. Only careful unpicking reveals why (though the why is often maddeningly elusive). Finding out why is so helpful. Finding out why (I find) often requires a group conversation. This can be quite random for an autistic person – a process of sifting and happening on rare pieces of gold.
But these golden nuggets can be just what we need to rub the looping critical internalised voices from our minds. Yesterday I learned about aphantasia from autistic blogger and researcher Shona Davis. Aphantasia relates to the inability to visualise images. I’m still wrestling with the concept and am uncertain that it applies to me wholly, but suspect that at least partially it probably does . I often find that peeling back sensory and/or neurological difference is cloudy at first, my kind of ‘normal’ is long lived and late diagnosis can feel like playing a game of tag with yourself. I’m also a little hung up on how literally to take ‘seeing’ pictures in the mind as an expression, let alone arrive at a whole new diagnosis just like that. But it sounds like an important thing to know about yourself when so many areas of life can be affected.
Okay aphantasia is not well known or researched, but I find myself reflecting in new ways on how poor information and services are for autistic people, how little attention is given to the detail of our diagnosis. There can be so many strands to each individual presentation of autism. Not only should we as a society embrace that fact instead of chasing tired old stereotypes about autism, we autistics should also receive commensurate support.
Aphantasia could provide the key to so much understanding of the many ways in which I struggle to learn and retain information, recognise people and keep them in mind when they are absent. It could also relate to the intense need to see and touch things to understand them, and to learn hands-on rather than in the abstract.
I also feel I’ve reached a tipping point after diagnosis in which I must begin to reconstruct my life. There comes a point where all the carefully garnered information about autism and reinterpretations of my decades on the earth should lead somewhere – to forming new helpful habits and adaptations I hope.
As I drifted off to sleep last night I tried to conjure a scene. Useless. See a yellow bucket, I said to my sleepy imagination. Imagination said no.
If I screw my eyes and dig back into word association fleetingly I get something – a picture book bucket. I find a black bucket easier to conjure (builder’s buckets are a stronger image – more familiar probably – but slippery as sand in my mind’s eye). I don’t get nothing at all but what I get is faint and has that rolodex quality which facial recognition also contains for me. I get there by association. I don’t see black (as some report) and I don’t see words either. Perhaps what I see is something in-between?
The more familiar an object is the more clearly I see it but it quickly skips away. I can see my fantasies (I can see pieces of art I’ve made or imagined pieces) but I can’t seem to conjure images to command. There are also powerful visual experiences which stay with me that I can’t easily rub out so I feel this form of seeing for me may be deeply linked to emotional engagement at the time of seeing (if that makes sense).
I reflect again how poorly I understood the variety within our autisms when I read Temple Grandin’s incredible book, Thinking in Pictures, so many years ago, desperate to understand my newly diagnosed child. I can now see that fascinating as it was it didn’t help me all that much. They don’t think in pictures either – though obviously some autistics do, while others of us can’t conjure a single mental image.
My work as a visual artist is curious when you consider that I don’t have this ability firmly embedded in my neurology, and that my visual acuity is otherwise high. I’m incredibly visually sensitive (sometimes this is painful) and this guides me in my work. Probably, as in so many other ways, I’m just navigating differently.
Yesterday I took a picture of a broken plastic magnetic letter while out walking (a new habit). It is orange, the magnet is missing and it lies frontside down. I can see it clearly in my mind and this image is stable. Is this because it struck me so? Is it because I took a photo, and then spent time editing it on instagram? Is it because I love orange? Or is it because it is the letter which begins all the names of the men closest to me?
In recalling it just now before adding the image I had forgotten that it was broken or that it had a small blossom resting on it. Otherwise my visual memory was strong.
I think the truth may be that when it comes to detail and specifics, when there is time to embed an image (as in the creative process) and when the emotional pull is strong enough I can visualise an object. Visualising a whole scene, or something in the abstract is something else entirely.
Somehow knowing this feels like a huge step in rebuilding my life.
May 6, 2018 § Leave a comment
I don’t want to write too many words. I’d like my video to speak for itself. Mainly, I need Arts Council England to know that their bureaucratic processes, in current form, disable significant groups of autistic and neurodivergent artists.
This is a specific issue in my life – but I also want to make a more general point that bureaucracy physically hurts us.
I know autistics who succeed in making Arts Council applications – I also know many who are unable to contemplate beginning one. The argument often goes that “neurotypical” artists struggle with it too. Albeit true, (in the sense that it is a gruelling process of competition for limited resources which also requires ‘insider information’ to succeed) it is also an ableist thing to say because it minimises exactly how uneven the playing ground is for us as a group. Just because some of us push through doesn’t mean it is okay. The bar is high – but the bar is also structurally unfair.
I want also to say that those of us who do take on the beast can be harmed in the process. I think this is disabling.
I think the Arts Council should know.
May 1, 2018 § Leave a comment
This blog post has turned around in the writing – all because Tamsin Parker has a truly remarkable voice. The voices of autistic women, how they are appropriated and contained, is the theme which runs through my post.
What’s becomes clear in her case, I feel, is that the socially constrained female voice and the issues of ‘masking’ autism combine, making autism a feminist issue.
But learning about Tamsin’s horrific experience at the BFI on her 25th birthday yesterday, was the final straw after a difficult few days.
I’ll be honest, hearing about it has been one of the rawest moments since my autism diagnosis in March 2016.
I rarely talk about being a mum because my children (now young adults) haven’t wanted me to, but the sheer cruelty and injustice of this act pierced my mother heart.
Coincidentally, last week I joined an impromptu group of autistic women using the hash tag #AutisticMotherhood. I’m not a joiner, so this was quite an event in itself, but I felt my voice as an autistic women had been appropriated.
#AutisticMotherhood was born on Twitter in response to Kibo Production’s play about a cold autistic mother character (who it is now claimed by producers is not autistic but has post natal depression). We even have a website where two open letters to Kibo can now be viewed. The play was written by a man who is not autistic, and you can read my views on this in my last post.
It felt important to pin my colours to this cause, but I also ended up feeling tossed about and quite at sea as a result. I reached a low point.
Sinking my energy into #AutisticMotherhood coincided with this cruel attack on Tamsin, and kaboom!
It felt so close – and not only from the point of view of a mother. I can also laugh uncontrollably in public. When this happens my shoulders shake, I wheeze and snort and make a ‘spectacle’ of myself, as well as crying ‘too easily’ – my other party trick. Some of us are emotional and expressive, but I guess I ‘mask’ enough to get by – but this masking constrains me.
Because I am autistic I do also get things socially very wrong sometimes – despite best efforts. The other day someone ran away from me in the supermarket (!) Yes – quite literally, he ran. I thought that was quite rude and showed a distinct lack of social skill, to be honest. Perhaps he was scared of my autism, which I had told him about in an email.
But the cruelty of that scene at BFI runs on a loop in my brain. What cuts deep is the native intolerance shown, and the insistence of some audience members to their viewing rights above common decency. They seemed to find it perfectly acceptable to round on a vulnerable young woman, one man yelling an abusive sexist comment, and others applauding her ejection from the cinema.
The hounding of an unconstrained female voice (as well as ableism) is what I see.
What haunted me was that Tamsin might be alone after this ordeal, and I’m relieved that she was with her sister and was able to go home in a car with her mum.
I’m also doing the best I can as a mum – but honestly, sometimes the scale of intolerance in the world breaks my heart. We have such a long way to go on invisible disability.
But then Tamsin’s mum Lydia posted a film by Tamsin and her powerful voice gave me hope again. I love her energy, which won’t be contained. I love how she sees the world and what she has to say. Tamsin is a strong role model for young autistic women (and indeed for women of all ages and neurotype).
Tamsin deserves so much respect for her love of cinema and her talent in filmmaking. One way to make up for things BFI (if you’re listening) is to put on a screening of Tamsin’s work.
Tamsin, if you read this, I have a diagnosis of Asperger’s too (though I like to call myself autistic). I think Force of Habit is one of the best advocacy films I’ve seen and very inspiring. If people are unforgiving, like the man in your film, then I think they probably aren’t worth knowing (unless they can change their minds).
Thanks so much for reading xx
January 23, 2018 § 20 Comments
Photograph by Stu Allsopp 2018
Don’t bother reading this. Yes – probably this blog post has been written before. Possibly even by me? I’ve written so very many posts since my diagnosis that even I can’t keep up!
Deja vu, reinventing the wheel, this is what comes to mind when I hit the web these days. Voices that have been silenced for a lifetime are compelled to speak, and in so many ways blogging is the perfect mouthpiece.
But I’ve become weary about sharing my life online.
Suddenly – as I approach my two year diagnosis anniversary – the plane is tanking. I’m not giving up on activism. There’s probably just a limit to how long a person can keep going without burning out a little, or even getting burned (which indeed I did in 2017).
Also there is overwhelm. It’s brilliant that the blogging scene keeps mushrooming – but it’s also that much harder to keep up.
And frankly ‘the autism conversation’ can feel a bit Kafkaesque these days. Working to counter prevailing narratives is a hamster wheel. The more you repeat the mantras – not broken, not a puzzle piece, not ‘with autism’ – the more they seem to come back at you.
It can feel like no one is listening – the majority aren’t. Perhaps they won’t or maybe they can’t? This is a question which troubles me greatly.
Yesterday – because my grasp of language is slippery – I found myself looking up the meaning of the following two words.
Realising quickly that I was out of my depth (I don’t really get the genres this language belongs to and I’m keen not to give the ‘aliens’ trope any additional help). But I am left with a craving for a vocabulary to express the inability of non-autistic humans to see us as we really are.
In the double empathy bind Damian Milton describes a difficulty in the communication process which originates from both sides of the ‘neurological divide.’
But I’m left wondering one thing. If I am human (and I am), and if other humans can’t see me as I am, what does this actually mean in terms of my embodied existence?
Why so difficult?
Cleary I’m struggling to identify a feeling. A feeling of being, and yet of not being – a lifelong sense of alienation and wonder(ing). At the weekend I momentarily toyed with the idea of being a replicant. And then thought about it in reverse. What if everyone else was a replicant in this warped narrative of othering? Hah, see how you like that!
Personal truth and authenticity seem to be at the heart of this – along with an uncanny sensation of a shift in time or space between us; a parallelism of embodied experience in which we can’t quite sync enough to grasp the nuance of the other.
And then I get it. No-body actually ‘gets’ anybody else (no matter how close they might feel, no matter how much or how little imagination they might possess). Surely all people really do is transpose their own experience onto others, period? If the embodied experience doesn’t match you have to try harder and ultimately take a leap of faith because you want to. (Tell me if I’m wrong.) I feel that the extraordinary writer Carson McCullers gives us a piercing window on this phenomenon in her debut novel, The Heart is a Lonely Hunter.
This goes for us all and – simply put – among autistic people there can be a much easier fit, and a higher chance of matching experience from which to form a bond. But it’s never a given.
You probably have to feel invested enough, and be willing to go to new places inside yourself to ‘get’ autism as a non-autistic person. You might even have to be prepared to lose your moorings (as autistic people have to among neurotypicals) in order to find the empathy g-spot?
Most people perhaps wouldn’t do this by choice. They might fear never getting back to themselves again (welcome to that one).
I don’t mean to say that there aren’t any neurotypical people who’re willing or able to do this, and do it while also holding on to their own boundaries (this last bit is very important). And god bless those who go for it and succeed. We love them.
But what I do think is that our daily efforts are largely a blank to most people, and the intelligence behind our multiple coping strategies is overlooked. All that’s often visible is the ‘getting things wrong’. Ingenuity, inventiveness, resilience and the sheer courage involved in managing our lives is an unseen entity, and indeed a valuable resource. Neurotypicals could learn as much from us as we are forced to from them.
But I’m beginning to feel it’s not my job to keep saying so ad infinitum. So I’m keeping schtum for a while. I’m not leaping about and waving banners, not until I can work my way through the sinking feeling that I need to try to be effective in other ways.
Ah, and I bet this is another staging post in the late diagnosis journey of becoming. In fact I’m almost willing to put money on it. At the very least I’d like a change of scenery from the hamster wheel.
I’ll still be working behind the scenes, but I’m good with quiet for now.