May 16, 2018 § 30 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.
March 27, 2018 § 5 Comments
I’ve been quiet on matters autistic – taking a break and inhabiting pastures new.
But it feels to me that late diagnosis is a process, with a pattern to it. Like with any process there are stages, and one day we’ll know what they are and books of the self-help variety will no doubt be written – I hope by autistic people. And books are being written – of all kinds – by autistic writers, which is wonderful. It’s just that presently we don’t have an overview because as a culture we’re pretty new.
I feel myself edging towards a new stage – one of certain detachment and reevaluation.
I did want to ignore autism awareness week but I find myself writing a blog post instead. How random it that? As random as a week in which to be aware of autism, I expect.
As random as getting caught up in online arguments, feeling triggered and generally being more stressed (like at Christmas) because humans in some number have decided now’s the time to be aware that autistic humans exist.
So my blog post is not intended to become part of all that. On the contrary, what I offer is a possible antidote. I’ve nothing against randomness per se, it’s just that I feel I’m not obliged in anyway to engage with what I see as randomly orchestrated events, especially when they have such potential to create turbulence in our lives.
I propose to deal with the problematics of autism awareness week autistically, by (in my case) deploying my unusual lack of calendar awareness – yes, for me calendars are quite surplus to requirements, as I navigate through time and space by other means. Calendars can be helpful but who needs all that detail!
Sensory navigation is far more enjoyable (and quite effective generally). Okay it does mean that you miss an awful lot – including for example when Easter is due. I know it’s coming up soon, but the precise timing of Easter is foggy. So it shall be with autism awareness week. We may be in the middle of it but by the power of autism within me I can forget this VERY easily.
Okay, I’m lucky. I’ve never knowingly ducked the issue of privilege in my writing but it’s worth restating for newcomers. Some of us can’t avoid autism awareness week – maybe it invades online spaces which act as a life-line. Now that is serious. What to do?
Well, we may be able to chose not to scroll through comments getting more and more triggered. We may be able to resist comment – thereby avoiding being drawn in further. This sounds so very Zen – probably it is. But honestly, after getting seriously burned more than one time chasing down triggering material I’ve developed an aversion to it. I learned that those who comment online often bait, or can have inordinately closed minds, that this is frankly exhausting to counteract, and can lead precisely nowhere. Worse, it can make us downright miserable.
I’m not talking about potentially fruitful debate (sometimes we just don’t know if the other person is genuine), or countering misinformation – to be clear – I’m aiming at the flotsam and jetsam of internet life (the crud which surfaces and does the rounds).
We’re a righteous people – of course we are – and we’re often maligned and misunderstood. I’m learning how easily we can be drawn in on a wash, spin, repeat cycle, but also how this can represent a constant return to familiar trauma sites.
Obviously, each one of us must make our own choices on how we manage this. I’m not preaching.
I’ve been asking myself honestly if I want to spend my time doing this, and the answer is that I don’t.
Putting out positive messages suits my temperament so much better. SO I’m trying an experiment.
Can I be critical and positive? Can I find ways to infiltrate where I can influence more?
Let’s see what this week brings. I’ve already been more vocal today than I have been in months. Perhaps the value of such blighted awareness campaigns are that they can make us think about how to do something differently.
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.
December 30, 2017 § 8 Comments
A post about unhelpful relationships.
You’re fantastic! I’m blown away by how many of you lovely readers have found your way to this site and even returned multiple times this year. Though I recently hit a dry spell I’ve returned to my stats page with a thrill.
I’m so grateful, because writing on The Other Side has been incredibly freeing for me. As an invisibly disabled person, I know that online blogs can be a lifeline – and mine has enabled me to spread my wings both personally and professionally in so many ways. Having company along the way has been the proverbial cherry.
My golden rules for writing are twofold. I’m careful to write mainly about myself, and try not to speak for others. I also write from experience. This has been vital in finding my voice, and in gaining the confidence to write what’s uppermost in my mind.
Along with some pretty fabulous events and opportunities this year, I’ve had cause to understand my vulnerability in relationships. It isn’t easy to own it.
But this can be a real problem for us – perhaps especially so for the late diagnosed autistic – who may have learned false coping strategies in relationships. We may need to learn a new and very particular discernment in the people we allow into our lives. For some of us it may be news that we even have choices where people are concerned.
It pains me to say that we might more easily be a target for unhealthy advances, but I think we often can be – unless we get wise, that is. In my professional life I’m a mentor to others, and I feel a responsibility to share my growing sense of heightened vulnerability in certain areas.
Apropos of which, I’ve begun to notice a particular type of advance from what I will call the faux enabler, who can present in many forms. Such individuals seek to help others as a way of gaining social currency, or even to obscure their own vulnerabilities. To be fair, they may not be aware of their own motivations – it can be a shock to some of us whose survival has depended on the ability to be deeply introspective and self-critical, that others don’t apply the same rigour to their lives. We ourselves are surely not without fault, but we’re often more prone to fall into self-doubt and try to ‘right’ ourselves (in my experience).
Unfortunately, autism can offer a touch of glamour for such minds. The trouble with this should be obvious, and it often is for family and friends, who may try to warn you that you’re the target of an unhealthy interest. My advice is to listen.
But I’m of the view that gauging the genuine enabler is not as hard as it may seem at first. There are some clear markers. Genuine enablers tend to keep a healthy distance while offering concrete, discernible assistance (of the kind which is actually needed) without making too much noise about it.
The faux enabler, in stark contrast, will zoom in and make constant demands on your attention. At first this can be flattering – you are being wooed. But it’s only a question of time before the intense emotional needs of the faux enabler begin to surface. Once more it may not be obvious. Often we have may have adapted to be kind beyond the norm. We may feel uncomfortable, but still we ignore the warning signs. Mixed signals may be to blame for our confusion – this in itself is a clue. Being ‘nice’ while messing with your head is reason enough to run for the hills.
Yes, giving your attention to such people is to lose your centre of gravity ultimately, because their need to be needed is so vast that you will likely be sucked into a vortex of unhelpful helpfulness. Again, I honestly think this may be unconscious in some cases, but this doesn’t make it any less troublesome to deal with.
Attention grabbers, in retrospect, were always obvious. The thing to grasp is how very smoke and mirrors some people can be – heaping praise and attention on you, while perhaps trying to separate you from a core group of friends and/or dominating all the spaces you might naturally inhabit. This should be a red light, but in the moment it can feel quite natural, and even be pleasurable until you begin to notice that something is wrong. You have been socially seduced with a view to ownership – in the more extreme cases.
The key to it all, I reckon, is to be wary of any person paying too close attention to you, while indulging in blanket flattery. If this is not a romantic relationship apply the brakes at once. It’s important to understand that you don’t have to reciprocate. This is neither unfriendly or cruel. The faux enabler will soon find a new target.
Genuine enablers are usually more discerning and are able to step back into their own lives. Anyone who offers to back you up without such discernment doesn’t actually have your best interests at heart. Deep down what they want is to keep you tied to them.
Manipulation is quite an art, and I’m currently reading an interesting novel called, based on a true story, by Delphine de Vigan. Being fiction (and a thriller at that) it is an extreme and ultimately violent example – but the patterns of faux enablement are spot on.
It plots the trajectory of a relationship which ultimately serves to immobilise and almost destroy the first person narrator. Delphine plays with what she calls “the Real” in her fiction – the book is perhaps autobiographical to a point, but she deconstructs the form as the novel progresses – and you never quite know where the boundaries lie. I was intrigued by this conceit.
In choosing this book, I was conscious of looking for further confirmation of my thinking on this subject (novelists can be so observationally wise).
It’s perhaps important to conclude with the view that faux enablers are not necessarily ‘bad people’ per se. They may have good intentions which are simply maladaptive. This is tricky, because the truly malicious person may be easier to discern and disengage from. In the end it doesn’t really matter – the only thing which does matter is you. Withdrawing from a toxic relationship is more important than being able to make a judgement on another person’s motivations, in terms of survival this is irrelevant information.
Owning our vulnerabilities and self-safeguarding come together, in my view. There is no way around this, but knowing it brings greater fortitude where social manipulation is concerned. Such wisdom is hard won and worth holding on to despite the pain of understanding that we may be susceptible to being played.
So my New Year’s resolution is to take a deep breath, and step back in making new relationships as a matter of course. And I do so hope this post will be helpful to others.
A peaceful and happy 2018 to you all.
NB The photograph which accompanies this post is of a work which focuses Anglo Spanish childhood. The book is an English translation of the poems of Federico García Lorca. Lorca was in-prisoned and executed by the Fascist insurgents under the command of General Franco, who later became Spain’s dictator for almost 40 years.
November 17, 2017 § 1 Comment
Out of the Ashes – notes from the frontline of creative practice on the boundaries of visibility.
My talk for:
Untold Tales of Neurodivergence and Mental Health in Oxford, a panel hosted by The Oxford Research Centre in the Humanities (TORCH) and Pitt Rivers Museum. Pod cast also available.
My talk today is about navigating the rapids of freelance work as an autistic creative and the challenges of working collaboratively across neurologies. My recent research has been a personal journey but has included a consultative partnership in the US and many conversations with autistic professionals across the globe.
I have come to know of so many talented hidden voices, and, while my talk is about a singular process, so much of what I have to say has a wider application.
My contribution to the theme of ‘Hidden Beneath the Surface’ is a tale of struggle in which becoming visible is an ongoing process and at times a question mark. What I offer are some preliminary thoughts culled from a much longer draft report for Arts Council England.
I am an autistic artist and creative project lead. I stand before you as a person in translation.
I form part of what has been termed the “lost generation” of individuals who are diagnosed late in life due to recent advances in knowledge about autism. In my work as a freelance professional, I need accommodations to access the same level of opportunity as that of my peers.
I am now coming to the close of a unique piece of work, a personal case study in the field of freelance project work funded by the Arts Council. The aim of this research is to design an enabling toolkit for my work as an autistic project lead, which I will also use to enable and mentor other neurodivergent artists.
The key to understanding this piece of work is that I have had to build my tool kit from scratch as my project has unfolded. This is the first time I have worked visibly as an autistic person and attempted to advocate for my needs in the workplace.
Freelance project work in the arts is often informal, characterised by highly individual working practices, and without clear structures. We need funding to create self-led projects from which to build sustainable artistic practices in line with our peers. Yet, without adjustments for the challenges involved, we can quickly become disabled in the freelance melee.
Our ideas are often powerful and original – funding us can be hugely beneficial and reap rich cultural rewards – but the barriers to our inclusion can be overwhelming. I have made it through the funding barriers, and yet my project proved disabling and needed major adjustments.
Autism as culture
Autism is both a neurological and cultural difference. We are a small minority with a unique social difference. We live in societies which expect and demand from us a social orientation and aptitudes which are quite other. This is pervasive and disabling in ways not easily recognised or understood by the majority.
But those who work with us don’t need to ‘get’ autism in its entirety – this is a big ask for our colleagues. Indeed, the demand to share personal information about ourselves to gain access is an issue in itself (Mia Mingus). In an ideal world, our needs should be accepted without question and active measures taken, but in reality, they are mired in social complexities, and we are currently forced to navigate access via the very social codes which can disable us.
Deconstructing the power imbalance
Aspects of my experience stand as a cautionary tale. The earliest iteration of my project floundered on the question of inclusion despite this being its primary goal.
The bare bones of my situation were that I had agreed to work collaboratively to shape a project around my needs. I had lent my creative idea, and my neurodivergence was the rationale for funding; but still my needs became submerged. So how did this happen?
Well, I think we need a wider understanding that effective inclusion is a two way street of adaptation, and that accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us – especially in close collaborations across neuro-types.
And, while we may seem to speak the same language, our innate human difference as autistics can be greatly misconstrued, and our value as the very people who can generate ideas and employment can become easily obscured in practice.
There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the ‘double empathy bind’ (Damian Milton).
Neurotypicals find it difficult to relate to and engage with autistic experience, and vice versa.
A mirror world exists in which the only difference between us is that of number. I promise you that many of the ‘flaws’ suggested by the deficit models of autism can be aimed at neurotypicals from an autistic perspective. This has perhaps been my profoundest piece of learning.
Project leadership and design
To lead a project, I need to work in ways which minimise my anxiety. Anxiety is a constant for many autistic people, and can become disabling.
High standards of professional practice can be extremely helpful in countering anxiety at work.
But my project had unwittingly placed too much reliance on a single means of access, and I was responsible for outcomes without being able to move the necessary cogs directly in an ambitious and complex piece of work.
This was hugely inefficient and anxiety provoking, and at times it seemed my project had been built on quicksand.
I’ve learned that enabling project design will include multiple and direct access routes, and allow for a hands on approach in all areas where outcomes matter, also that truly successful access must be written in at the point of design and not simply added on later. My toolkit and my thoughts about project design have begun to merge.
In the informal freelance arts sector, there can be a high reliance on NT friendship codes and relationships.
Autistic access needs can be socially misunderstood due to prevailing norms and the emotional needs of others. It isn’t easy to find a way to tell your colleagues that the emotional labour they take for granted can be taxing enough to make you lose the power of speech later in your day. Invariably, people tend to feel that your needs don’t apply to them, because these norms are so powerfully dominant and immediate in our lives.
But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work.
My mid term project hack was to establish rules for contact, and filter interactions by limiting contact time and channelling all communications to one email address.
These simple adjustments quietened down all noise which was not work related. Some forms of invisibility can be a very good thing.
Masking and trauma
But generally we have to mask or otherwise camouflage autism in the workplace, and this is exhausting and destructive in the long term. It is this very issue my research seeks to address.
It is genuinely hard for colleagues to understand this, because autism can be invisible even when we try to explain ourselves, and such failures of communication can be genuinely traumatising.
Our struggles can be made clearer if we talk purely in terms of access and equivalences with other examples of disablement. The will or ability to adapt to our needs, however, lies in the hands of our colleagues and is not often in our power to influence via social means of negotiation. This is the nature of our vulnerability as freelancers.
As autistic professionals we face a bewildering tautology. In order to become visible, we must express our needs in translation. We share language and use the same words about a sometimes radically different set of experiences. We cannot thus assume a shared meaning or understanding. This is why it is vital to focus on the machinery of access – the nuts and bolts if you like.
Translating autism is a job in itself and no guarantee of successful communication, and though I am a huge believer in cultural advocacy in its many forms, I think it is unwise to expose ourselves to this labour in workplace negotiations.
Equality, I’ve come to think, should not require that we ‘overshare’ our vulnerability (so to speak). This can serve to accentuate the power imbalance in collaborations across neuro-types.
I think that smart project design will be the kind that fits so well you can barely see it. And for this, we need the liberty to design our projects around our neurological profiles, and present our toolkits as a matter of high professionalism. For this we need spaces to think and plan autistically, and to share and disseminate our learning, which is my intention.
My quest has taken me much deeper than expected but I think my learning is all the greater for it.
Visibility is not for everyone, because privacy really does matter and may be crucial for wellbeing, and the layers of our suppressions are multiple and complex. But I have found the urge to test these boundaries has brought the richest of rewards – that of personal and professional congruence. I am profoundly grateful to the Arts Council for this opportunity to develop my practice as an autistic creative.
In becoming visible, we encourage others to do the same. This creates momentum and so can lead to change. But, in doing so, we can be measured in what we share, and this too is our right.