May 27, 2016 § 7 Comments
Meeting other autistic people is a rarity. Being openly autistic it’s happening more. You have to be out to be seen, and be seen to find others. Online brings a richer crop of tribe members, but in so-called real time, not so much.
Yesterday brought a glorious exception, and an hour and a half of utter joy.
There’s a special regard and tenderness between autistic friends, I’ve noticed. Often we meet first online. “Real time” meetings follow on from something no less real but somehow 2-dimensional in comparison.
As a newbie autistic I’m learning so much. Each day I wake up and quite literally pinch myself. As I gain more direct exposure to my culture I continue to peel the layers of that onion, I’ve spoken about in previous posts.
I see my life retrospectively with new eyes. I see it autistically. I see it as autism. I see each beacon moment as an autistic one, because that is who I am to the core.
So it hits me in waves the struggle I’ve had with the physical world. The struggle I have, I should say, BECAUSE it continues and will never change. The challenge of living in a hostile sensory world is not visible to others yet it exhausts me.
And this is where part of the joy in meeting other autistics resides. VALIDATION.
I suddenly know that I have NEVER experienced this in the way neurotypicals must do, basically all the time by simply being together.
You only know what’s been missing when you find yourself in it’s company.
So this is what it’s like to be part of a hidden tribe.
Like non-identical twins separated at birth, we two tribal siblings have found one another. Even knowing that we’re diversely diverse, we’re nonetheless cut from the same cloth.
We see it and feel it.
We drink tea and eat cake.
We laugh, and laugh at our laughter.
We make eye contact and take turns to speak.
Our empathy crackles around the room.
You made sure I was seated safely facing away from the neon lights.
I checked before hugging you, never assuming touch as a given.
Regard and respect like no other.
Forged from the shared gene pool of autistics sensibility to an unthinking and unknowing neurotypical world.
We bust just about every autism myth in record time.
Yesterday I learned that tribe needs tribe.
For validation. For self-esteem. For courage.
To flourish we need one another.
May 24, 2016 § 18 Comments
(Detail from Sonia Bouè WIP of 2012)
Notes from a newbie.
Okay, so I’m still peeling that onion. Three months on from diagnosis and the layers of autistic reality keep on coming at me…
Most of the time, in my case, autism just is. It is me and I am it. Like inseparable twins we walk the road of life together. No biggie.
Then there is overload and the painful aftershocks of being in toxic environments. Last week I realised (for the first time) the consequences of exposure to air con. I can’t handle cold in any form. A day of exposure to air con and the result is a weekend of flu’ like chills and migraine. I had to put myself to bed.
Before diagnosis, I couldn’t link these extreme symptoms to their root cause. But now I know that I can’t self regulate temperature because I am autistic. Put me in a cold environment and I WILL go into thermoshock. Simple.
Other (more interesting) issues are also coming to light. The deep discomfort I feel in certain situations crystallises as autism. Aha! My unease though is often due to neurotypical behaviour, which – I note with great irony – can be finger wagging bad.
For the first time I see that, on many occasions, I am the most patient and best behaved person in the room. Yes – I am not exaggerating. Autistic people often understand and follow the stated rules with more passion and vigour than a neurotypical person could even begin to understand. I have learned rule following like no other, when rules are clear. I’ve also learned a bucketload of politeness and know how to wait and take my turn. I can even mimic patience – I do this as well as any professional stage actor. I can act patience in my sleep.
I know that NTs do this too. It’s all part of the social game of never being entirely honest or saying quite what you mean. But NT often don’t follow their own rules. There is the override – of the quiet and polite. There is the butting in to an existing conversation at will. There is even the ignoring of the person who is first in line and the privileging of the loud interloper. No, no. Not ALL NTs do this. Some are rule followers too, but it seems in some circumstances (of higher pressure or import) that many more are not.
I reflect that, knocking yourself out acting patience, when all around you NTs are ignoring your very presence (probably because you ARE being polite) is annoying. It is also exhausting.
It wastes a lot of time, it’s rude, and in my view (I hate to say it again – no actually I enjoy it!) finger wagging bad.
Autistics get a bad press for being badly behaved (in NT terms). We famously meltdown or are abrasive and “rude” ( NT code for honest). Yesterday I realised that we are probably never given credit for our patience and politeness. That will be because the loud interlopers are too busy making noise to notice us or realise that our meltdowns come at the very end of a very long line of extremely good behaviour.
Over and out.
May 22, 2016 § 9 Comments
(Dirt Cups 2014, my homage to Meret Oppenheim’s 1936. Fur-covered cup, saucer, and spoon)
It can be hard to strike the right birthday note. This post is about alternatives in the all pervasive social narrative of what makes for a happy birthday. While this dominance is unintentional, nonetheless it carries a potentially damaging myth about what can and should make you happy.
It’s my view that the happiness and mental well being of autistic people will be enhanced when our own versions of sociability and celebration are inserted and validated within mainstream culture. Without this we continue to be prone to false expectations, which can be harmful and destructive to an autistic sense of self. We are only made fragile through denial. A robust psyche (conversely) is created through authentication in the wider eye. Recognition and respect are fundamental to accepting and assimilating plurality of neurological existence, including autism as an alternative paradigm.
Birthdays can feel every bit as alienating as other major holidays for some autistic people.
As a society we must begin to take note that for some of our citizens birthdays can be a trigger for traumatic memory, an emotional minefield to be navigated with care. Birthdays can manifest as foci for isolation, on one hand, or social pressure and overload on the other. Over and over. Year on year.
This is because autistic people are so often excluded, not only from social invitation, but also (almost entirely) from the public imagination. A narrow concept of what autism is, and what autistic people can bring to the broader neurological table of humanity, is to blame. Clearly we have a long way to go, but we also need to start somewhere. We need to chip away at misconception on all social and cultural fronts, including attention to our rituals. I believe it is our rituals that make us.
We could be so very much more imaginative (pluralistic) and kinder as a culture in both our understanding of and performing of birthday rituals, and extend our rather limited concept of celebration to include a gamut of options. There is but a small repertoire of actions, which value only one style of social behaviours, and are riddled with assumptions. It takes courage, if not defiance to break away in both practical and emotional terms.
As I write, I realise that there will also be non-autistics who would also like a little less social pressure around birthdays, and although my post attempts to go more specifically into autistic identity, I will be very glad to have you on board.
I’m not traumatised by birthdays myself, but I am a little wary. Memory is hazy, but I have a sense of childhood birthdays as boobytrap days. Days brimming with hidden depths and shallows.
Having just revisited the secret comforts of ageing privately, I observe once more that there’s an advantage to piling on the years – it becomes increasingly socially acceptable to hide it
No. Not once you start to unpick exactly how deeply social assumption runs through the veins of our neuro-dominant culture at each and every turn.
While we’re conditioned to cover up signs of ageing, this too can be a pretext for social activity. Neurotypical people are more likely to do this covering-up in company. Sound oxymoronic? Only when viewed from the outside, perhaps?
In some versions of what birthday is, the problematics of ageing are performed and mediated as a group experience. Wrinkles can be commiserated, if not toasted, and hilarity ensue over the less appealing aspects of ageing. Some people need this kind of validation and benefit from what I might term social superglue.
I get it (and even why), but I don’t want to do this, or any other version of it. Not that I don’t love my friends, I emphatically DO. I’ll even happily talk wrinkles and chin hairs over coffee or a glass or two. It’s simply that what I most want on my birthday is quiet and the absence of pressure.
So what’s the problem with that? You will probably only ask this if you are not autistic. The problem is that mainstream culture serves to mock and pressure those who don’t conform, and we are made to feel lesser about our needs and choices. Societal expectations just DO NOT FIT.
So I want my own oxymoron – to assert quite LOUDLY the absolute legitimacy of the quiet birthday. And I will give you my three main reasons (which may be different for other autistics who prefer a quiet time).
I don’t like to be the focus of attention.
Less is more.
I only have so much social energy (spoons) to call on in any one given day. Socialising comes at a great cost (think a two day hangover or jet-lag).
There’s one proviso to all this – there will be autistic people who DO want to go clubbing on their birthday, or hang-gliding, or get plastered with their bessie mates. And that is okay by me.
What we need in cultural terms is to take a step back from these models of birthday fun and take the judgment out of staying home, being alone, and binge watching on Netflix (if that’s what gives you joy). It’s NOT sad, it’s not Nobby no mates, it’s not wrong.
It’s TOTALLY okay to be you.
My one unshakeable birthday ritual is tea and cake – in a clean cup though, the above image is only art!
May 14, 2016 § 13 Comments
Hot on the heels of my last post, this one is born of an absolute compulsion. A necessary response to the swell of emotion eddying the shores of its expansive comments section. Please do take time to read it. In turn it has both warmed and angered me, and broken my heart.
The size of it is one thing. Never has a comments section sprawled so extensively – not even for my best read post to date, Asperger Syndrome and Me.
The content is something else.
I call it a deeper pool. My words have conjured a deeper pool of unmet need than I could have ever imagined. Late diagnosed adult autistics have not been called the lost generation for nothing.
After writing it I travelled to London. Descending into the bowels of the underground system at Victoria I felt again that familiar lurch on the escalators. Cue vertigo. Cue headphones (useless against the dreadful cacophony – I will have to buy better). And cue the thought that since diagnosis I have lived the most cliched metaphor of them all – that of peeling the onion. Frustratingly I realise cliches are so apt often because they are so very true. Overused they lose in value. This precious onion feels too good for common currency, for as I gazed on and off (poor signal) at the comments coming in on my phone I FELT another layer slew right off. How to convey the new and totally naked sensation, the through the eyes of babes state I then found myself in amongst the insentient crowd?
As though pulling off a heavy woollen jumper on a suddenly sweltering day, I had removed one more layer of discomfort and confusion. That is how it is to be diagnosed autistic so late in life (at least it is for me). ALL your perceptions have been founded on a misapprehension – and you must shed them one by by one.
For the first time the true weight of my position – and that of my fellow autistics – dawned on me. Through the comments of others I was able to join the dots. The disconnect I experienced with my GP is a very much wider autistic reality. Not a one off, near out of body experience, but rather the ubiquitous blanket of neurotypical obsfucation we face en masse in the task of “translating ourselves” to the non-autistic world.
“Obfuscation is the obscuring of intended meaning in communication, making the message confusing, willfully ambiguous, or harder to understand.”
I use this word cautiously. It is not necessarily that neurotypical (NT) culture wilfully obsfucates autistic experience. It is probably rather the case that NT culture is blinded to it. There exists a real and highly problematic inability to see beyond the monolith of neuro-normatism. In one sense I knew this from all my exposure to autistic culture through blogs and friendships with autistic adults. My experience as a mother also taught me this. But here was a new form of data, which rendered me naked (so to speak) on the tube. My own fledgeling attempts to “explain myself” to my doctor had chimed in (profoundly it seemed) with other autistic adults. This was the lived experience of that which I had talked about so often with my friends. To live it is to truly know it.
So I’m now caught between two poles of reaction. On one hand, I blink in wonder at how I could have been so naive to expect otherwise. On the other, I shake my head in disbelief and fail to see why it is not possible for other sentient beings to grasp my situation, and that of my fellow late diagnosed autistics, as a delicate and extraordinarily emotionally complex thing. Further, ours is a life long condition – so where is the adult support?
It is almost as if, because we’ve seemed to cope thus far (or rather remained under radar) it is considered possible for us to sink back into our pre-diagnosis invisibility. But it’s just not like that from within. Diagnosis (self or official) is a Pandora’s box, the lid can never be shut again. Invisibility is not an option unless it goes by the name of erasure. For that is what it is when you acknowledge the existence of but then ignore a people.
I’m a newbie, so it behoves me to be perplexed, but I believe it is utterly bewildering that our condition post-diagnosis is neither acknowledged or understood.
Resoundingly I found repeated and repeated in the testimony on my blog that NO, there is no such understanding, no conversation, and no provision. Support for adult autistics just doesn’t exist.
Abruptly I dislike my metaphor. Onions make me weep. I tunnel my way giddily up and out into the busy street. This was not a good sensory day and a powerful gloom descends of the kind we do so well in England. The British weather is treating me to a full menu – coat on and off, umbrella up and down. Jumper round my waist and then pulled back over my head. And worst of all grey, grey, grey.
I think some more about the deep pool as I make my way home. I’ve had enough of London and just feel so awfully sad for the crushing isolation of my people.
For all my struggles with the world I have enormous privilege and joy. I am an autistic person, who can navigate aspects the NT world – I’ve been conditioned to it all my life. My difficulties stem from living in an ableist society and the overwhelming denial of my autistic experience and of my needs. I’m exhausted at the effort it takes me to be NT spaces, and battle the daily assault of the unpredictable sensory world. I don’t diminish this struggle but I do recognise that I am lucky.
With privilege comes responsibility.
So I will keep writing.
May 8, 2016 § 65 Comments
So I finally got round to my post autism diagnosis GP appointment. On a tide of euphoria at officially becoming autistic I emailed my GP with a copy of my report, saying I would like to come in and talk about support. My GP wrote back promptly suggesting I make a double appointment and thanking me for the “interesting” report.
The word “interesting” in this context sent a strange uncomfortable signal to my brain. An example of autistic extreme sensitivity perhaps, but having suddenly become “interesting” I also suddenly became ill at ease.
In fact I recoiled.
I didn’t want my diagnosis report to be “interesting” to my doctor, I wanted her to help me. Becoming interesting for being autistic is a genuine fear, but I got it. She didn’t know what to make of my growing array of unusual ailments, which before diagnosis were tendered haltingly at sporadic appointments during which she did frowning and I did squirming. We couldn’t make each other out.
Now that it’s autism (cue gasp/head nod/chin scratch) we’re suddenly on double appointments and interest, which makes sense. I guess this is what a label does.
But it won’t surprise autistic readers to learn that this set me back several weeks in making the call. We can be easily put off. Sensitivity and history combine often. We’ve been steamrollered with misunderstandings all our lives and will naturally want to avoid volunteering for more.
Time passed, anxiety subsided. My strategy of waiting seemed to have paid off. She’d forgotten how interesting I’d become and needed reminding of why I was there. Result!
Except no. As a tiny jolt of recognition passed through her body and she snapped to, and so prompted by her interest I launched into a brief description of the diagnostic process, and my subsequent progress towards untangling who I am after a lifetime of adapting to the neurotypical world.
It was lovely watching her jaw drop as I likened diagnosis to the euphoria of marriage and childbirth – I do like surprising people with this true fact. I enjoyed less my inability to convey the very real difficulty in becoming more authentically me after all the conditioning I’ve gone through. She misunderstood. Thinking I felt under pressure to conform to some notion or other I may have picked up of being more autistic, she counselled that I must only use what I needed of the autistic label, only that which was helpful to me.
I began to discern that I was talking to a newcomer regarding autism and neurodiversity, a kind and well meaning professional who at present couldn’t grasp the process I was going through. I was surprised that like so many lay people I know, she – a health professional – couldn’t imagine the emotional complexity of late diagnosis or autism as culture and identity. Only part of our difficulty in understanding one another was due to communication styles, the larger obstacle was that the person in front of me had yet to take a significant perceptual shift from the neuro-normative perspective in which a majority view of human experience is embedded.
I tried again – temporarily circumventing the long game we will have to play together if we’re to make progress in this relationship – and briefly explained that I wasn’t trying to be anything other than myself (adding that we’re all different), and swiftly pressed on to more practical matters.
Sleep. Overload. Self-regulation. Anxiety.
To my astonishment she prescribed a mindfulness app, which I duly downloaded but later rapidly deleted from my phone. I would need to subscribe to this and follow a programme of mindfulness exercises through which I would be taught mindfulness (!)
I made it to about 7 seconds of the download video before deleting. Then I hugged the inner child who had to pretend to nap on the rubber mats at nursery school because her racing mind just would not slumber. I was three but I still remember it most vividly. Post diagnosis it now marks my earliest sense of being different and wrong. The point is that I can’t follow your systems, I can’t aspire to your mindfulness template, I will fail, I will be wrong.
For those who are curious, a task such as learning mindfulness techniques (I’ve tried) goes against my wiring (think herding cats), and would also represent an additional cognitive load in my day – something new to remember and stick with. The app ironically contains too much information (and of a sequential nature) to process and is presented in an overstimulating way. This may work for some autistic people – but not for me.
With my newfound autistic self-confidence I pressed her for emergency sleeping pills. These I have been consistently refused in the past on the grounds of their addictiveness and side-effects. I get that, but sleeplessness is an extremely serious long term health risk not to mention the destructive effects on daytime functionality. This time she agreed.
On collecting my prescription I felt nothing but relief. If I’m entirely deregulated I might be able to get a night of respite and hopefully re-jig my body clock. It was not until opening the package that I discovered the pills contain lactose, something my GP should know I’m intolerant to.
Note to self – write to GP asking for lactose intolerance to be flagged up on my records each time she prescribes a new medicine for me. Perhaps there’s an app she can use?
My GP seemed to know nothing about local organisations from which I could derive support. Luckily I’m better informed and I know where to turn if needs be, and I’ll be writing to her with details so that the next newly diagnosed autistic patient benefits.
We have a long way to go together, and I can’t help reflecting that along with all our other challenges we must also educate the professionals whose care we fall under. This is the lot of the “lost generation” of late diagnosed autistic adults.
May 6, 2016 § 7 Comments
My last post was about waiting for Arts Council England (ACE) to make a decision on my project. Funding from public money in the arts is limited and brings a great responsibility to the recipient. So I feel incredibly fortunate to have been awarded funding under the Grants for the Arts scheme, and will give my all to this work. The ability to maintain a sustained focus and perfectionism are real assets in my job. They are also what enabled me to put three months into the project development and application – though I could not have made it through without my network of helping hands. Trusted neurotypicals, who were willing to share their insights and skills with me to navigate the NT world.
Autistic artists face multiple barriers in applying for this kind of award. These became apparent to me during the application process, and I have begun to write some survival notes for other artists in my art blog. Yesterday this particular blog post was shared on Twitter by the Arts Council itself – it feels as though my message about the inequities faced by neurodiverse artists is beginning to filter through.
ACE have a wonderful helpline for those who can access the telephone and you can also email. There are generous access measures in place if you can find them and they happen to take the form you can get along with. I felt encouraged at every turn by the people interface at ACE. But difficulties remain in accessing the access for many of us (a frustrating tautology), and further barriers created by the clunky new online portal called Grantium. A more detailed analysis of what is so very wrong with this template for neurodiverse artists will be a longer and more technical matter than befits a blog post – and possibly the work of consultation with ACE if they’re willing.
These are major issues for neurodiverse artists, but could be improved without great difficulty I feel. From my days of social policy study I reckon these to be “at a stroke” changes, meaning that they require only policy shifts and administrative nods to implement. SO it is important to bring them home to source, as I’m certain ACE are committed to access and equality and that these obstacles are systemic and unwitting.
The larger more insidious inequities are those of the social world which are embedded in arts opportunity on every scale and form. This will take a great deal of unpicking to arrive at an adequate description of what is so very disadvantageous for autistic artists in particular. I’m ready for the long haul.