Autism, masking and ageing. A personal view.

July 1, 2018 § 31 Comments

 

Sonia Sketchng for Spirit of Beehive

Recently at work in my studio – exploring images of childhood in film.

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.

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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.

 

 

 

 

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Not thinking in pictures; autism and a possible sub-diagnosis of aphantasia.

May 16, 2018 § 24 Comments

 

Fragementation 2

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.

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Portal: disabling bureaucracy #ActuallyAutistic

May 6, 2018 § Leave a comment

 

Portal 10I 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.

Get networked in! Autism and systemic ableism in the arts.

April 15, 2018 § 9 Comments

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Mrs Pepperpot to the Rescue

 

My name is Sonia Boué and I’m an autistic artist. I’ve had a lot of luck in my career lately –  which has largely come about using my own autistic methods and working with two truly wonderful mentors. On the face of it I look pretty networked in, but most of my opportunities have come from sharing my work and ideas online. At the end of each project I have to start from scratch, and I have no idea how to ‘use my contacts’ or network neurotypically. The sheer scale of the social labour involved in networking neurotypically is beyond me.  This is why I have created a new kind of network called WEBworks, which is autistic in conception and in all it’s various manifestations. It’s for autistic artists and has a focus on professional development and creating access to opportunity. It’s a small pilot project – manageable and yet ambitious. It’s about empowering us all to become more visible and gain parity in the arts.

People are probably attracted to my work because of the intense autistic focus I am able to give to it – my attention is directed at what I do and not who I know.

So it’s been a jolt, and a hugely painful experience to be told by someone from Arts Council England at a recent conference (in a room full of professionals) to just “get networked in.”

Invisible disability is a box you can tick on a funding form to indicate who might benefit from your project, but it remains invisible in terms of just who might be present in a room full of professional people all grappling with the diminishing funding pot in the arts.

Autistic people are invisible as players. We’re so invisible that I’ve unearthed a major inequity in the funding requirements for those like me who aspire to be players. You see, I need big funding for my project, which includes support for WEBworks. Under present funding rules I need to prove why I can’t compete on a level playing field to match fund my project – and make the case that disabled people should not have to match fund their own access needs (and in my case that of my autistic colleagues). Perhaps no-one has thought of this, because no-one like me has ever applied to be a player?

(NB. I have been told ACE rules don’t demand that we match our access costs, and that exemptions exist within the present system – but this is simply not reflected in the mixed messages ACE give to it’s funding interface users).

When I found myself quite by accident at an ACE funding surgery in my local area and brought up the possible problems with match funding for disabled people in general – I was told this would have to be proved. If you just have a foot missing we wouldn’t be convinced.

I let this ableist comment go at the time, but made a mental note – this person needs training – and I  (and all my autistic colleagues) hold much of the the missing knowledge.

A missing foot (if you will call it thus) could imply almost any level of impact in a person’s life (invisible disability such as PTSD, chronic pain, fatigue…we just don’t know and shouldn’t assume) which could affect their ability to raise the signifiant sums of match funding required if they are also not networked in. We’re not talking peanuts, we’re talking resource rich networks from whom signifiant favours can be drawn into a project – for which you have to be resource rich yourself to earn them (in ways I, and those like me just can’t be).

I shouldn’t really be blogging. I have my Arts Council application to finish, but this is way too important not to bring to light.

You see something profoundly (if unwittingly) ableist just happened to me, so aspects of Arts Council England’s disabling funding system have literally fallen into place.

I  tried to speak about access in the system at a recent arts conference where Arts Council representatives were present.

For context, I rarely go to arts conferences because I find them inaccessible and they often don’t tend to speak to my experience.  I don’t generally go about with a large ‘A’ stuck to my forehead, or a, hey, I’m autistic! t-shirt on either. In fairness not many people knew my status (though I did make a point of telling everyone I spoke to). If I go again – as I now feel I must – I will break all my own sartorial rules and wear the t-shirt (with flashing lights if needs be).

But when I raised what I consider to be a very real problem of access I have myself encountered and blogged about on the a-n blog site, I was just not taken seriously by the Arts Council representative. In the time it’s taken me to cut and paste this link I’ve received a comment from another artist. I know I was speaking for many.

“Yes, yes, YES! Keep going! I didn’t know there were diversity officers. Thank you for writing about this.”

Yet when I did speak up I was assured that everyone could have access to this particular service – just like that!

One person who heads a National Portfolio Organisation agreed. We have a regular meeting where you can talk to an Arts Council relationship manager (people who hold key information and can help with an application process)  – as though I should perhaps have known about it.

Like the Alf Prøysen character in the illustration above, I immediately shrank to the size of a pepperpot! But something made me go on (I’m autistically stubborn and all about justice).

But you have to be networked in to have this access, I pointed out, without stopping to reflect that this might seem rude. I was contradicting someone who had (oh, to hell with it) contradicted me. As I look back on it now – they were essentially making my point for me.

Well, get networked in! the Arts Council rep replied, as though this were the easiest (and most equitable) thing in the world. That appeared to be the end of my ‘non-point’. I was to join the NPO groups’ monthly meetings, job done.

I felt the room close in on me. I had both humiliated myself and been silenced.

In the break that followed, there was no processing time. One kind person offered to send details of the NPO group meetings, and another told me they too had struggled to get access to a relationship manager.

Then darkness – a film presentation to end the day. An unexpected event. Tears rolled suddenly down my face. Have you noticed how obvious tear wiping can be – so much rustling and grabbing for tissues, and elbows wiggling as you surreptitiously dab at your eyes. I let them roll.

But why tears? People had been nice to me, and the moment had passed.

I cried because the film was just so beautiful. Broken lives were being made whole again through the arts. I cried because I had been disabled by taking a risk and speaking out. The profound silencing of autistic people is historic and deeply painful within each one of us.

I want to talk to all the regional directors of Arts Council England. I want to talk to the director. I would like to tell them about our struggle, and the bias of their systems.

I want them to know how art redeems every aspect of my life and keeps me connected.  That I and others like me have so much to give – that we can be players if the playing field is levelled. What’s more we bring authenticity to the table. Truth is that Arts Council need us as much as we need it.

I’m not networked in, I will probably never be so in a recognisably neurotypical way. I rely on people to ‘get’ me and meet me half way. What interests me is how to make the system open and fair.

I want people at the very top of the organisation I apply to funding for to know how hard it was for me to stay in the room at this conference. How hard I have to work to be present, and what it took for me to raise my voice.  So here goes.

One of the presentations just goes on and on. Everyone in the room is loving it I think, but the stage lighting sends an never-ending series of blows across my retina. I’m sitting too close to the stage. And the voices won’t stop. So many voices.

I’m caught by surprise. This shouldn’t happen now – the conference is in its opening stages and I have all day to manage. I struggle to find a strategy or any kind of relief. I begin to wriggle in my chair conscious that I mustn’t do this too much or someone will notice. Surely it will stop soon I think, so I try to hang on. But no, it just carries on and on.

I dig into my bag for the the soft tangle brush I sometimes use to rub across my palms to regulate the build-up tension, but by now I’m honestly near screaming point – the option of screaming occurs to me but I fully understand this would break an unbreakable rule. I realise after the event that the voices were too loud – the mics were set at the wrong level for someone with my sensory issues sitting so close to the front of this theatre space – I received information from the sound system which others can filter out. I’m desperate but rooted to my chair. The brush is as effective as a wet sponge. I dig it into my palms but it may as well be in my bag for all the good it does me. The voices just won’t stop – I close my eyes but not for long. Drawing attention to myself is the last thing I want to do. As the presentation draws to close I suddenly remember to pinch my skin under my sleeve and I step out of the storm.

The lighting shifts again and we’re brought back into a room I can regulate myself in more easily. I can appear ‘normal’. There is no visible sign of my distress or the energy it took for me to survive this level of unexpected sensory onslaught. I’ll know in future to sit at the back with easy access to an exit.

I want everyone at Arts Council England to know that telling anyone who begins a conversation by saying that they have struggled with access  (in any context and for any reason) to get networked in, is simply not equitable. And I’m sorry, but for invisible disability it’s like telling a wheelchair user to grow a leg.

If you listen bottom up to authentic voices you’ll also discover why not everyone can just speak to a relationship manager.

It’s time for social currency (and who’s got it) to rise up the Arts Council diversity agenda.

An Arts Council award can be a profoundly life changing event in the professional life of an artist. This is what I want for all the artists who are involved in WEBworks.

In fact, I might just attach this blog post to my application. Why not – it sums up the need for my project perfectly.

 

 

 

 

 

 

 

Saturated – losing my mojo, & the question of embodied existence as an autistic person.

January 23, 2018 § 20 Comments

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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.

halfling

undead

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.   

 

 

 

 

 

 

Troublesome People – a New Year’s Resolution. #autism

December 30, 2017 § 8 Comments

 

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SKATING ON THE THIN ICE OF MEMORY – Sonia Boué 2017

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. 

The unmasking #autism

December 23, 2017 § 8 Comments

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A post in which I write about late autism diagnosis and masking. I speak only for myself (as ever). Some autistics are not able to mask, and others may not unmask in the ways I describe. 

I’m more than a little wary of making an analogy between the unmasking process in adult autism, and addiction. It’s not the same thing at all – and yet the demands to perform neurotypicality are both toxic and habitual (by societal demand).

The journey of becoming more myself (as an autistic person) is one of awareness and self-discipline. A diagnosis of autism has meant I’ve had to identify the deep run socialisation that goes counter to my neurology. This essentially means learning to stop using the camouflage strategies that have helped me survive in the social world.

Tuning in to others, adapting and moulding ourselves to their perceived needs is indeed survival mode behaviour, which has been called masking. You can imagine how tiring it is to maintain this over time, and why recovery periods are needed. The concentration and adrenalin needed to get through certain situations can be tantamount to sitting an exam.

One especially heinous side effect is that you can lose all sense of yourself. It seems that imitation lies at the core of this adaptive behaviour, and inhabiting other personas can (in my experience) leave you feeling hungover and disorientated for days to come.

But what happens when you begin to unpick this learned behaviour? What happens when you stop shape-shifting because you’ve understood how much it’s harming you?

This is a gradual process (in my view) which also ebbs and flows. There are still many occasions where masking is required. I still slip it on unconsciously at times, but with a growing sense of awareness.

I’m learning all about giving up masking right now, as I’m full tilt on a project and simply can’t combine this level of focus with successful masking. My project burns away at the waxy candle ends of my mind at 3am most days. I have a tight deadline, and I need to apply new skills. I revel in every moment of it.

Sure I’m in a tight spot and I don’t enjoy the insomnia, but I’m stretching my mind and can wallow in the glory that is hyper-focus!

It just means I can’t pay much attention to social niceties, and so I’ve gone monosyllabic. Social media stretches like chewing gum before my eyes. I’ve started to cancel appointments.

Yet I find that I like myself more and am increasingly more content.

Who knew that a smily face or hand clapping emojis could be such incredibly satisfying shorthand? Bless their makers, for they say everything you need when you don’t have the time or resources to mask. I find, for example, that I most enjoy leaving a one word comment these days or a quick social nod with a like.

It makes me feel solid and good.

Concision is a new find in my social lexicon. Just say less!

This perhaps should not come as lightbulb discovery so late in life, but when you’re socialised to be a pleaser you tend to provide substantial amounts of social glue.

But unmasking means changing habits and changing thought patterns too. Unmasking means I can begin to find my own contours and stay me shaped for longer. This makes it easier to locate myself if I have to mask. I can recover more quickly too.

There are still major obstacles to overcome, but this is new. This is revolutionary!

 

 

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