June 16, 2019 § 1 Comment
I’m currently adapting to a new situation, which for some autistic people can be tough to handle. The need for time in which to integrate patterns and routines is not something I’d identified before my diagnosis of autism in 2016.
Now that I know about it I can follow the ups and downs of what I will l call my wrong-footings like the contours of a map. I’m almost in sync with my own discomfort (gasps from the gallery!) which is not supposed to be that common. Isn’t autism a ‘being out of sync’ thing? In some ways yes…
Yet, I’m not where I was pre-diagnosis, which is why I’m keen on identifying as autistic. It helps me manage life in ways which are beneficial. Building a set of strategies is key, I feel.
I’m suddenly part-time caring for my mum who is 93, and after a long lifetime of coping, is suddenly frail and in need of 24/7 care. It began with a punishing two week stay in hospital. My sister and I took shifts and made sure she was never unattended even at nighttime.
Autism made this a challenging job in some ways, but it also enabled me to maintain my focus on mum. I understood that I could tackle the rigours of a large and busy ward with its bright lights, constant noise, high social demands and substantial emotional labour, if I established routines and rituals. Two huge pluses were that the ward ran to a discernible daily routine, and that there were plenty of rules (these were variable according to staff but they were readable and a transgression could be decoded and added to my database).
My shifts were often 24 hours +. During each shift I travelled the same routes in and out of hospital carefully noting the landmarks until they formed part of my inner landscape. I ate the same food every day, which I bought from the limited outlets on the hospital site. Creating familiarity and limiting choices spared my cognitive load and lowered anxiety levels.
An early moment of crisis came with a sudden change of location for mum. Without warning, on the third day of her admission a porter arrived and she was moved from the clinical decision unit (CDU) to a main ward in another building entirely. In addition to the new map I would need to input, we had shifted from a diagnostic ward of four women (CDU), to an individual side room on CDU, and now on to a ward with fourteen beds.
This all meant progress in medical terms but it had an impact on my ability to cope. I began badly on this ward due to wrong-footing. Give me no preparation time, change my environment, make that environment densely peopled (with no privacy) and I will be ‘flustered’. Communication breakdown followed.
I’m glad it did. A delirious person in their 90s can’t advocate for themselves, and many physiological changes take place which can affect the ability to carry out basic bodily functions in an orderly fashion. Arriving on an elderly ward where staff don’t know your previous baseline functioning, and where these symptoms can be confused with dementia, can lead to conflict about how best to care for them.
Mum had been admitted with a urinary tract infection (UTI) and was finally on IV antibiotics. On our first night on this ward there was a moment at 4am, (having spent the night asking for bedpans a regular intervals, and trying to keep mum from falling out of bed) when I found myself on the sharp end of an auxiliary nurse’s tongue. I got a bollocking for want of a better word. Unbelievably (to me), I was told I was upsetting my mum and making her anxious, and that this was prompting her frequent urination.
It turned out that auxiliary night staff didn’t know she had a UTI (and significantly I didn’t know that they didn’t know!) I tried to explain that I didn’t know the rules of the ward yet, which seemed to be very different to the CDU, where it was okay to use the call button to ask for bedpans. As it happened, shifts differed. I quickly learned to update staff on mum’s current status, and to ask how we would handle toileting needs in the night with each incoming team. Communication and planning made all the difference.
This moment was signifiant. It could have been the moment of my unmasking. I seriously considered it, as I have sometimes done before in extremis. But I stood my ground – though I know that I looked horrified (I can tell when my face freezes and I openly stare at someone in disbelief). I have a very expressive face – which can get me into trouble! In the end I asked the nurse to leave me alone. This felt appropriately assertive.
We subsequently patched things up and became best mates. I liked and admired her immensely, she was incredibly kind but had misread me. In turn I discovered her acute stress about the very real possibility of having to work a night shift alone the following evening (eventually a second nurse was found). The turning point came when I uttered a foul expletive that this could even be a thing. We were on the same side – pro NHS and anti cuts to frontline services.
There followed a conversation with the ward sister, who asked me if I was unhappy with the care on the ward. Together we unpicked events, and I stressed how appreciative I was of her staff, but that there had been a problem of communication. I could have mentioned that I am autistic and need clear consistent communication. Again, I held back. Would this be useful when the misunderstanding was on both sides, and that staff had lacked crucial information? This was nothing to do with my autism.
I figured clarity would be important for any family member supporting their loved one in hospital, and nothing about the environment could be changed for me. Nurses were stretched beyond capacity, and my needs in this instance could be managed by me (my hyper focus and my myriad routines and rituals).
Significantly, I felt that staff would view me differently if I disclosed – and I needed to become part of the team somehow (and I did). If we were to get mum out in one piece, I had to mask-up. Due to systemic ableism I didn’t trust my unmasking wouldn’t create bias or prejudice against me and count against my ability to report accurately on my mother’s progress. As it happened, twice my pattern recognition skills proved vital to mum’s treatment. I don’t believe that I am wrong in thinking I would be taken less seriously, and where life and death were concerned I wasn’t prepared to do the research to find out.
I find that masking continues to be required beyond hospital, and in my care of my mum at home I’m navigating the boundaries of my masking even further.
I’m part of a growing team of carers as we get to experience a post hospital service which is on offer for six weeks in my mum’s local area. This has been fast-moving, as there is a window of time to claim it. All of this is so welcome but requires adjustment. The landscape changes, and it changes again.
The greatest change is in my time and my location. A split week is proving hard to adapt to, and this experience has felt what I imagine a small but significant house fire to be. I’ve lost a month and am slowly piecing together new routines and rituals. Forgive me if I owe you an email or a piece of work! I’m getting there.
In this piece I may have equated masking with ‘coping’, but I don’t quite mean it this way. I also seem to imply that if my autistic needs are met I can mask more easily, and that that’s a desirable state of affairs. I feel this may be true but am not advocating it for others. I’m just exploring what happened to me and I’m keen to ask questions of myself.
What I know I do have is a complex relationship with masking, which I want to be honest (and hopefully nuanced) about. Stigma exists, often we don’t have a choice (those of us who’ve learned masking as an adaptation). For myself as a bilingual person, I have come to think of masking as a bilingualism, wrought by the necessity of living between worlds with different cultural norms.
I hope to write more about masking and caring as my situation evolves. I find it shocking to think that in a public healthcare setting I didn’t feel safe to unmask my autism. I didn’t feel confident that staff would have received sufficient training to accept my competence once unmasked.
June 16, 2017 § 1 Comment
I take the entire inspiration for this post from a conversation with my friends and colleagues at ACAT in Berkeley, Brent White, Tanya Coffield and Laura Harrison.
Autistic leadership is both pioneering and not new. Paradoxes are what we do well, and while cultural advances and moves towards social justice bring forth a new cohort of autistic people who seek to lead in their respective fields, autistics have been quietly leading since the dawn of time.
Well, what we can say for sure is that autistics (including self-diagnosed) are now openly assuming leadership because we have to. The very justice we seek in social terms demands it and shapes it in a glorious (if somewhat gear crunching) symbiosis with the aforementioned cultural advancements. Though on all fronts we still have a long way to go.
And here is the rub, we recognise that autistic leadership is required, but we don’t yet know the shape and form it must take because we’re forging it right now on the anvils of our souls.
If that sounds melodramatic consider this; I’m often moved to use the canary in the cage analogy for my own work and those of other autistics I know. As a people we are vulnerable to environmental hazards – as leaders this can be magnified because we must process an extraordinary volume of fast flowing information and translate experience (both frankly energy-zapping in a way that can shut autistics right down) while carrying on responsibly as leadership demands.
We also carry trauma (a particular issue for us all but often complicated by late diagnosis), and can be ‘trigger magnets’, not only regarding our own histories but also that of others in our care. How to hold it all, and survive overwhelm and overload are in many senses not only about developing models but also about intense personal growth (insight based investigations on a virtually doctorate level and of the kind your average allistic would probably have no need for in the workplace). The workload can be incredible and almost impossible to log let alone recompense.
Yet as I suggest above, our leadership is not new. Not. One. Bit. It has simply not been recognised for what it is, or it has perhaps rather been sidelined and appropriated into the mainstream. We have and often continue to lead quietly and even unknowingly, while others seem to make the noise and get the attention. I bet it was ever thus.
But the point is that as a people we shouldn’t be lead by those who don’t fully understand us (a wider societal and historical problem that the individual must wrestle with in the workplace), also that autistic leadership should be acknowledged for what it is – the generator of so much that is good for the whole population and not just autistic people.
Perhaps the main impediment to autistic leadership is not that we must design it in our own image from first principles (though this is true as all existing visible models are allistic) – it is rather that we are not yet believed in as leaders.
This is what has to change in a wider sense, so that we can be freed to make our leadership models and create the support networks to sustain them.
I read so often about executive function for autistics, and the devastating impact of exposure to what I am beginning to call environmental hazards (the sensory world and allistic – socially embedded – expectation). Some autistic readers may feel that ideas about leadership might as well be beamed from the moon for all it has to do with their autistic reality. I have those days too and it’s hard not to admit defeat.
So I acknowledge my privilege while asserting that this is a hard and lengthy struggle for us all. Also that leadership comes in so many forms and can be so varied in scale. Recognition of what we do, on what ever level this may be, could be the start.
Self recognition may have to come first. Seeing others could be the inspiration, which is why I make myself visible. This is certainly how I began my journey with a trip to see my friends and mentors Brent White and Tanya Coffield back in 2015.
This post is for you. xx
May 22, 2017 § 6 Comments
It’s time to talk networking and how it can work against autistic art professionals in particular. I won’t talk beyond my own experience but I hope what I say can apply more widely.
From the outside I appear relatively networked in. I have public funding, and I’m a member of an artists’ studios – I have in the past participated in group shows and events from time to time. I also have incredible collaborators and artists working with me on a group project. As I grow into my autistic self and gather congruence in my life I’m making professional relationships which feel safe and sustaining.
But in a wider sense I struggle with networking in ‘real time’.
Professionally speaking, I fall into the category of ’emerging artist’. I’m not really sure what comes next – possibly being an ‘established’ artist. These are subtlties that barely register with me as an autistic person.
But I do know that generally speaking networking is a significant factor in gaining visibility and access to opportunity and the elusive commodity of gallery space to show work in. I’m less bothered about status but more about finding square footage and audiences.
The practice of a certain kind of networking demands being out in neurotypical spaces – often way out of comfort zone. The majority of professional networking spaces can feel out of reach for many autistic artists, though we’re a varied bunch and some us will be more extrovert and confident in public spaces. Nonetheless we are a group for whom accommodations for networking could open up a whole new world. For now it’s a case of suck it up buttercup.
I’ve been inspired in some of my more recent thinking about this by excellent guidance issued by Shape Arts, for Global Access Awareness Day, 2017.
Access becomes an issue the more we must inhabit neurotypical spaces for professional development and visibility. The more one must perform neurotypicality the more disadvantaged, and ultimately networked out we can become. Physical environments can also be too hostile to our sensory integrity, and we lose out doubly.
For the autistic artist whose social vocabulary includes camouflaging neurology there exists a painful dilemma; to get out there and mingle, with all the attendant drain on functional capacity, or defend against it and experience the consequences of remaining networked out in a real and important ways.
Networking is a sometimes I can but more often I just can’t thing. There can be such lovely and genuine people out there, but what I experience is a bewilderingly fast paced array of possible introductions in a vertiginous sea of knowing faces. And they all seem to know something I don’t.
Art circles can be intensely cliquey and competitive too. I can sense this faster than the average person takes to breathe in and out again. I have to be here and play power games? Ugh no.
I recently turned down a very high level networking opportunity indeed, for self-protection. Alienation is bad enough – who wants it with knobs on?!
I do know some autistic artists who would make the opposite call and suffer, and I know ones who wouldn’t make it inside the building. Either way – they’re all heroic to me. I know what guts it takes to handle this kind of stress.
Each of us has to make that call, and I usually bail, preferring instead to focus on what I can do, and what works for me. I guess this is the point I’m trying to make. Exploring helpful means of being there so that opportunity is not lost, and/or initiating and inhabiting new kinds of networks of opportunity. Working the systems to autistic advantage to locate alternative sites of influence.
I’ve recently tried asking for help with access in an informal yet significant space – my own studios – where networking involves pub meetings. But what would such accommodations look like?
An online forum I suggest, wondering how many other artists with access needs who miss out on these meetings would potentially benefit from such a thing? Associate artists who live out of the city, artists with small children, artists who also have a disability (invisible or not)…anyone who can’t make it to the pub that night…
We do have a space online but it’s pretty dead. So if that’s the space – how to animate it and is that down to me? Should it be? Or should the people who inhabit ‘real time’ feedback online?
I found it both hurtful and significant that of the 40 or so people in the email chain I made my request to, only one eventually responded.
No-one opens those emails a separate friend told me – and immediately I understood that outing myself to a group comprising of plenty of unknowns had been a non-risk. Hah! Talk about an anti-climax!
But these are serious questions – which I think all art organisations should be asking themselves in 2017. What are you doing to be inclusive (especially those with public funding and/or charity status’ to protect) – how are you excluding disabled people through basic assumption? Autistic professionals may be one of the last frontiers for such awareness – but accommodate us and you accommodate many others with access needs, I would argue.
When met with a request for help with access it will be because the person who needs it has been brave and taken a risk – because in this socially risk averse society it takes guts to do this. But unless we say so the playing field is not going to level on it’s own.
March 17, 2017 § 13 Comments
I’m grabbing at thin air. My words plucked from a cloud in which a soup of experiences swill.
It’s true of all my writing that until start to pin my words to the page it’s as good as alphabet soup. Such is the autistic mind (in my case).
Contentious terminology was the subject of my last piece called When only autism will do, for which my favourite comment was a thank you for my badassery! This pleased me more than I can say.
So I’m back again at the coalface – or the cola face (as I just typed before correcting myself). Oh how I would like to be at the cola face right now – with my face in a cola. But I digress.
What I’m grappling with is self-definition but it’s all a bit drifty and hazy (the shifting sands of autism, to switch the metaphor).
But anyway – here I go (and the usual rule applies that I speak for myself).
I’m at an early stage of a late-life diagnosis which probably makes a quite a difference in terms of perspective. If I fall down in what I’m trying to say, I hope my kind readers will help pick me up, rather than throw rotting fruit. Which is kind of where I’m going with this.
Yesterday I bought chips from the chip shop round the corner from my studios. Kaz, the charming chip shop owner (and as it happens extremely talented photographer) was feeling it. It being the weight of world events. He sprinkled some wisdom along with the salt and vinegar. I’m getting old, he said (we’re roughly the same age). I’ve been mistaken all my life – and I’m praying for us to save ourselves from ourselves (referring again to global matters). I nodded, and left with a warm feeling (emanating from the chips probably) and the final golden nugget; the only thing that truly matters and can save us is love.
And swoosh! Into the sunlit street I bounced, past traffic and trees heavy with pink blossom, clutching the warm package of potato love!
I assume Kaz means self-love is important too. I hope so because I reckon it is.
But it is love in a wider sense (this is old fashioned I know) which I’m finding so missing lately. It’s been replaced by the kind of static you get from a nylon nightie pulled roughly over your head. Shocking and hateful – or rather hate filled human expressions are what we find reflected in so many media outlets that there are days when you don’t know where to look. Not enough love it seems.
Amidst all this static I find myself with a daunting task – staying afloat and making sense of it all as a newbie autistic. I’d really like to find some clarity about who I am post diagnosis (haha! even my diagnosis of Asperger Syndrome is contentious).
So I’m making a list I can hold onto, and if it helps anyone else in my situation I’m more than happy to share.
- I identify as autistic rather than Asperger’s.
- Question: can I be seen, heard, understood and respected as an autistic person by others?
- Insight: 2 seems tricky especially as I don’t fully understand me myself yet.
- Identity appears to shift in varying and wider contexts than my own four walls.
- The necessity of passing seems to affect 4.
- Neurodivergent (ND) as a term has both advantages and disadvantages.
- I’ve decided I like the bluntness of the word autistic better. I like the clarity and ‘shock’ value it brings. I vehemently dislike aspie and autie.
- I can be badass.
- BUT please – if I forget my manners give me a nudge!
- Note to self. A bag of chips is only ever two blocks away.
- Further note to self. Try not to drown in world events.
- Because even numbers feel right.
March 10, 2017 § 26 Comments
Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing.
This post is about access and exclusion.
It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.
And if you say thank you very much for all your kindness but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.
This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody – unless you fancy a nice slap down that is.
Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.
Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).
What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.
Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?
It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.
SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.
This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.
So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.
This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.
I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.
I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.
I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?
My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.
My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.
And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.