Category Archives: Uncategorized

Becoming Autistic

Two vignettes:

The day after my Mum died I had to call someone about a project. During that call I said I was going away to my Mum’s funeral and it emerged that she’d died the day before. The person said “But you sound so cheerful!”. I remember wondering how else I was going to sound, given that I’d been phoning them about a professional project, not for sympathy. The easiest default option I had available in my voice register was “Happy to help”. It would have taken some work and effort to find or perform “Feeling some complicated grief, identity confusion and dread right now”, and wouldn’t have been relevant to the subject of the call anyway.

Many years ago I worked in the open plan office of a radio station. I’m not sure now what the context of our conversation was, but I remember being surprised when one of my colleagues said it made them a bit sad to see me coming in each day and attempting a greeting, perhaps a general “hello”, in such a low-key way that it was generally ignored. I probably wasn’t doing eye contact right and was doing it with a lack of volume or conviction. It was basically a bad performance of “Greeting”. It was unusual for someone to point something like that out to me. It may or may not have made me better at doing “Hello, I’m here” after that.

I thought of both these things when I was in the company of two hundred people last week for the “Autscape” conference. Given that it’s grown year on year since starting in 2005, then perhaps it was the biggest gathering of majority-autistic people there’s ever been.

Coming down to breakfast in the hotel each morning, I’d institute a round of “Hello!”, breezy smiles and “Good mornings” at people I recognised. They’d nod or smile back. Once I noticed one of them was sporting a red badge. Red badges mean you don’t want anyone to initiate interaction at that moment. “Argh! Sorry” I said, then tried to continue my self-berating over the coffee machine so as not to make it about me. One of the many wonderful things about the rules and guidelines for being at Autscape (set out in the handbook and at the “Orientation” session) is that autistic people, as all people, make social mistakes, so to be tolerant around not following a rule- interrupting someone or not noticing an interaction badge or using the wrong pronoun or whatever.

By morning three I had come to recognise that my round of constant greetings was actually a bit tiring and unnecessary. I’d learned a behaviour that works well in neurotypical space but isn’t needed in autistic space. In fact, it might well have been taking my own energy and also using up the energy of people who were already managing hundreds of interactions throughout the day.

When I caught myself doing it, I self-berated internally for being “so neurotypical”, whilst at the same time, recognising my clumsiness mirrored in many people around me, which somehow felt like it was making me even clumsier than usual, berated myself for being “so autistic”.

Both of these (internal, quite ableist and inaccurate) berating voices are NOT the voice of Autscape itself. It’s strength and sustainability seems to come from recognising that, as well as being a place where autistic people can “be” themselves, it’s also (especially given that at least half the delegates in any year will be newcomers) a space where autistic people can “become” themselves. Experiment with just who this is and might be. See it reflected and responded to in others. Had I stayed another day, I would have tried to do a breakfast without greeting anyone. Put on the red badge and dared to say that I was too tired for interactions for a bit. After all, being officially identified as autistic only two years and having spent the vast majority of my life among mostly non-autistic people, I’m still very much in the process of saying hello to my autistic self…

Heartfelt

heartfelt

bright blue, red, yellow
I can’t stop looking
but then we have to cover it
with white wool

water and soap
turn and rub, press and mould
she says
you will feel when it is felt

the famous writer
tells us my kind
only have feelings for ourselves

I can’t see how the colours
will get back on the outside
will something dissolve?

I had told the front row girl
with the rainbow fringe and eyebrows
they made me happy
and she flapped her hands at my prints
and how things matched

it is cutting in the end.
Scissors along the bottom so the inside
becomes the outside

more pressing and moulding,
relieved to be told
it’s harder than you think
to break an uncooked egg.

 

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Notes from the Hip Yak Poetry School

Notes from a facilitator at the Hip Yak Poetry School (Run by the Hip Yak Poetry Shack for poets in the South West, May 23-6, 2019)

DIY culture. I was born to it. Methodists, cloggers. But often it’s not just DIY, it’s ask someone else and before you know it you’re all Giddens’ mobile, flexible workers together and no one has enough time to stop to enjoy the trees. 

But I miss this, miss these tents of people who “entrain” (join together in unconscious rhythm, as Chris Redmond told us) in clapping, laughing and saying words. In-jokes, the celebration and acceptance of quirkiness, a counter-public.  An alternative to “Zip Zap Boing”, a game for every performance workshop- the Eastenders version. Every game can be rewritten to include an “Oi!” but we get stuck on old tracks. 

The sign inside the flush toilet said it would save water if you felt able to use the dry toilet instead, I never did. Maybe it would have taken longer than four days.

Funny poems used to win slams, that’s how I won them. Not now, apparently. Or do they mean trivial. Me and Scott Tyrrell laughed at the poets who fake-cried at the national slams at Stratford-East in 2005, but they were a coming wave. We stepped outside from the foyer into the guests at the comedian Linda Smith’s funeral. “Look- there’s Jeremy Hardy!” we said. 

Pete Bearder (book on spoken word forthcoming from Outspoken) says that there’s a “crisis of the elders” in the spoken word community. They (we) move on to things that pay or value us. It was good to see grey hairs here. I kept circling back to my first tour in 2010 as if it was the scene of an accident or a crime, and my recent one as if it was a cake I had uncovered before I was supposed to.  

There was a conversation about being tactically old, tactically white, tactically gay, tactically female. In my head I translated back into PhD terms: “Rhetorical marginality”, “Translocational positionality”. In a tent, I felt the feelings of two poets who do not primarily want to engage audience feelings. 

Maya Angelou spoke to me in a stone circle and said I was more engaged when I said “We” can change things than “I” can change them. Bukowski and me worked out I wanted a quiet space and time, as represented by a house with a swimming pool. Kerouac somehow knew I wouldn’t want “To parent” written on my face. I told Adrian Mitchell to crack on, he had a logjam. 

In the past I worked for free to get poets to join a union. I worked for free to get spoken word poets recognised and included in a publishing manifesto against harassment and power abuse in literature. I hoped the top-up would filter down. The calls for these things still come. I’m not in the places that need it so much, or if I am, I’m talking about my matching tights, Brexit, the politics of clapping. I’m not made for the long, slow, thankless slog of activism, though I suppose I’m still here. 

I love the flat surfaces and the musty smell in my caravan. I can see everything I need, nothing gets lost. 

I don’t say that poems about the climate emergency should become part of every stage backdrop, part of the poisoned air we might clean, but not always explicitly. I don’t say that one way to hope is to hope that species left to their own devices will recover from what we’ve done eventually. That the human-animal-plant hierarchy means as little to me as the funny-serious hierarchy.  

People ask “Will I be heard?” and I say “Yes, I hear you wanting to be heard” and they hear me. 

We take our shoes off and put them back on as many times as children. I worry that some need spoilers because we are opening gateways and not everyone has valves or can work out when they will be needed, without more information. Matt Harvey, whose kindness lasts like limestone and makes people cry, tells me about the Archimedes screw, which lets water through weirs slowly. 

There have been, and will be birthdays, we marvel at how Liv is conducting us, at how she is an oak and are relieved (or I am) when someone else offers to take on the task of something like a strategy that has been imagined by us in our final yurt gathering. I think I have heard all this before, I think all of this is new. On twitter, separately, someone suggests in not so many words that poets telling other poets how to make a living as poets is a Ponzi scheme. 

Slipping away to swim in a bath-hot pool was a need not a want, and easier to assert now than at the time this weekend reminds me of most. The time I call the “Yes-phase”.

I spot neuro-siblings (some of them) and we slip into a different language briefly, unnoticed. Other groups are doing this. Remember how we are belonging by not belonging, I want to remind everybody. The service station on the way home was a mistake. Liv says our souls will come back to us after we’re home, they’re following more slowly on camels…

Autism and the Arts Festival (University of Kent): 10 Things I Learned

A blue line was painted on the floor to link all the buildings used as venues at the Autism and the Arts Festival. The organiser, the heroic academic Shaun May had hoped for something more like this:

Not Actual Blue Line

but it ended up more like this (though with more waves, diversions, paint splashes and corrections). I wish I had photographed it. But I was so busy. Doing events or interviews for a podcast made by me and Joanne Limburg about autism and literature that I think might just be the best thing I’ve ever helped make happen, or chatting to people. Or relaxing by walking through bluebells, or eating.

Not Actual Blue Line Either

I still seem to have some brain left. Which is surprising after three days. So, whilst thoughts are still fresh, here are some things I learned/thought/found out as a participant, chatter and audience member:

1. Autistic joy is a key component of autistic creativity. It’s a glint, a shine, a glow, an intensity. It powers writing, pictures, music, novels, not to mention inventions, discoveries, analysis…

2. There’s lots of it about. Many of your favourite things exist because of an autistic person following what makes them glow.

3. Autistic creativity is full of folds, bends, diversions. It makes unexpected connections and gleefully crosses boundaries, genres and conventions. It can be completist. It can see the whole of things as a shape and insert interchangeable parts.

4. It’s nice to see it without it being framed by doctors, psychologists and psychiatrists talking utter bollocks about it or the people producing it.

5. Autistic voices are getting louder and more public. I don’t think there’d have been a strong demand to turn a gig with loud clapping into into one with silent clapping even two years ago for example. (It happened at the gig I was doing with Robert White for example. I was glad).

6. Autistic people seem to vibrate and hum at a higher, faster frequency than non autistic people and are sensitive to this. (See also moves between slow & fast). That means there are more very calm and very frenetic patches of energy throughout autistic space. It can be contagious. Some people are calm-seekers, some are frenetic-seekers, some oscillate. (I’m a big oscillator with a veer to calm). There was enough space for everything to coexist.

7. Many autistic people said they felt much more relaxed in social gatherings than they normally would (I did).

8. There are so many hidden histories yet to uncover about autism. The whole “Mothers being dubbed mentally ill because they were trying to get help for their daughters” thread is terrifying. Co-occurring physical conditions like POTS & EDS are still under-recognised.

9. Dislocations-physical, mental, emotional, spatial are likely to be a feature for autistic people. These dislocations occur on other axes too. Sometimes obscuring, sometimes clarifying. No one is “just” autistic. They are from a place, a time, a class, an ethnicity, a gender. They share dislocations with others who are dis-located-which may allow the forming of bonds, or may lead to double, treble, quadruple dislocations…

10. These burgeoning, fragile, necessary autistic spaces may be the foundations that can help explorations to, and with, allies, companions, partnerships. However power imbalances within and outside these spaces must be acknowledged and respected. Being able to be there was a privilege not available to all. (That shouldn’t be taken to mean that the path to being there wasn’t differently hard for so many of us). It is always better to be done “with” than “to”. Luckily autistic people (can have) strengths in clear, direct, honest communication. What could be more useful (& endangered) in a post-truth world?

Touring a Show: The Good Stuff and the Challenges

I’m sitting in an M and S cafe failing to start writing my next show and the pilot episode of a sitcom. Instead, I’ll record some of the learning from touring my show “Where There’s Muck There’s Bras” and hopefully be useful to another stand up/poet/spoken word theatre person if not myself. It has been categorised in comedy sections, theatre sections and talk sections in the fifteen theatre/arts centre venues (plus five rural touring venues) it’s been to in the past couple of months. It also contains spoken word/poetry. It started as a commission from last year’s Great Exhibition of the North and I hadn’t originally planned to tour it, but enjoyed doing it and thought there might be an audience. Here are ten good things about doing it, and ten challenges:

Good Things

  • I was paid properly to do it and could pay other people. The GEOTN commission was for £20k and allowed me to work with an actor, director, producer, designer, video person and basically make the thing properly (The shows that became my R4 shows were self-funded and produced and made on a shoestring). I then got £11k ACE funding for the tour and could pay a PR company, tour booker, actor etc. The shows themselves also earned at least £500 each. I’d seen folk like Luke Wright and Aisle 16 working like this for years but, having had quite a difficult experience with my show Kate Fox News back in 2010, hadn’t had faith it would pay off.

 

  • I’ve made a show in the mix of genres I work in; stand up, storytelling, poetry and this time, because of working with brilliant director Annie Rigby and actor Joey Holden- theatre. I also acted (and sang for about twenty seconds!) in the show which was terrifying but opened up a whole new canvas for me.

 

  • People came to see it. Average audience- about 100. Having struggled in the past (Say on Kate Fox News) to get people to come to poetry shows, this was a relief and a joy. Back in 2010, Claire who did my PR said that Edinburgh could lead to a fast road in which you were feted and a big hit- or otherwise you’d have to take the slow road. Building up over years. I thought I’d left both roads- but turns out from doing shows and radio and being around over the past decade or more, I’ve taken the slow road and enough people have seen and liked me along the way to walk with me a bit (Plus the show image/title/concept helped a lot!).

 

  • I didn’t really know what people meant when they said that if you want to tour you should “Build up relationships with venues” but now I know there are some venues whose audience and ethos fits what I’m doing and hopefully they’ll book me in future and I’ll know I can go to them and have an idea of how they work. Also, good venues have amazing connections with their audiences and can put them all at your disposal to bring the right people into your show.

 

  • I’ve learned more about how tours and contracts and things like guarantees and ticket splits actually function.

 

  • I feel like I made a piece of work I’m proud of, that I enjoyed performing and that audiences connected to in a deeper way than a superficial “That was alright”.

 

  • Connected to that- I had something I wanted to say (about Northernness, class and gender), which I said in technical language of chapter three of my PhD, but then managed to say in a more entertaining way to over 2000 people in the flesh (Average readership of an academic paper: seven).

 

  • It’s made me look at the future in a slightly different way- this might have been a fluke but if venues will book me and audiences come see me, then I can think bigger about future work I do (and it can help sustain me as a writer and performer, rather than being something I’d assumed I’d lose money doing).

 

  • I loved working with a team (nearly all Northern women- as in, women who live and work in the North of England) who helped me do and think things differently and often better than I ever would have on my own.

 

  • I now have a piece of work that can be and is being) booked in it’s own right after the tour and can go from a literature festival to a fringe festival, a textile festival and a poetry festival because of it’s broad appeal.

 

Challenges

 

  • I’ve worked with a brilliant team- but it has been hard to get people to work with me initially. From established theatre producers to culture-ents PR people, they’re not lining up to work with a stand up storytelling-theatre-poetry person.

 

  • Turns out (as Laura Brewis and Carole Wears discovered) touring a small-scale show just in the North is hard because venues have “exclusion zones”. Usually things like that you can’t go to a venue within thirty miles/within six weeks- three months. The North’s not actually that big…(and it’s not like I’m Michael McIntyre…).

 

  • It took a while to work out that it was vital to use a microphone because otherwise there’s always at least one person who can’t hear and others have to strain. It may not be about volume exactly but sound quality. This is an access issue and after the first three shows I went and bought a Sennheiser Radio Microphone for about £220 (I was surprised how often venues don’t have them, just cable ones which aren’t as flexible) and it’s been brilliant.

 

  • There was a point when all the dates and contracts were coming in that it just got too much information to take in and I didn’t really have a strong sense of what the tour looked like- I was so busy trying to write the show and other things. It became a constant distracting background buzz in my head. Less so than when I used to do everything myself- but there’s still so much to do, sort out and think about and it can hamper your need for creative quiet time.

 

  • I discovered that the £500 I spent on local newspaper digital ads as a bit of an experiment (I’d originally thought about real newspaper ads) might as well have been weed down a drain.

 

  • It was relatively easy to get local radio and local newspaper coverage. I naively thought that as the show was on in Manchester, we might get some national radio stuff. (ha ha ha). I think that would have been possible only if we’d gone to London. It (issues of combined Northernness/gender) doesn’t seem cool or “relevant” (to use what will become an increasingly important word). Plus- it wasn’t happening in London therefore it didn’t exist.

 

  • The first shows had the brilliant actor Joey Holden with me. It was then hard to work out the logistics of one-off tour dates (as opposed to strings of dates) for a London-based actor so we came up with the cunning plan of adding a video element to the show. It’s worked really well and Virtual Joey adds a whole new dimension to the show (including a haunting), but it made me realise that there’s a great value in solo shows when you’re often having to work at least six months ahead. However…

 

  • …If it’s just you, then you can’t have down-time if you’ve got flu/a dodgy throat as I did for the first few February dates (not, to be fair, that I could have done even working with other people). On the positive side, doing shows while under the weather makes the ones you do with all your spoons much easier.

 

  • I hate being video’d and photographed and have been very late in getting a proper trailer and production shots which, thinking about it, are vital and I should have sorted out last year when we first did the show. However, this all comes back to planning ahead. I didn’t know we’d tour in the spring, or that I’d get booked for more dates, or actively want to book a second leg of the tour.

 

  • Returning back to the London thing- I haven’t actively sought reviews but it would have been easier to get them if I had done London shows. Social media and unsolicited Tweets/Facebook posts and Instagrams from audiences have been wonderful. And, I did do literally a whole PhD which might suggest why a show done by me on this subject matter with this approach might struggle to garner cultural capital…

Lifting the Lid (Tins Tins Tins poem for Barnsley Museums)

I was commissioned to write a poem for the launch of the “Tins Tins Tins” exhibition, celebrating the Barnsley Canister Company and the beautiful tins they produced.

Loved hearing more from women who worked there in the seventies about factory and office life. (Especially as I’m a product of seventies office life- born of an affair between a secretary and her boss!). This project really resonated with one I recently did for Kirkleatham’s Steel Stories exhibition about the steelworks in Redcar. Overwhelming sense of family and support from being part of the factory workforce (which can be idealised but was also very real and now felt to be vanished).

Exhibition at Barnsley Town Hall til September

 

Take the Lid Off

If you take the lid off the four storeys 

of the clacking, stinking, buzzing 

of Barnsley Canister Company, t’in’ole,

you’ll know this town 

wasn’t just built on coal.

Some thought it was too much, 

they should keep a lid on it,

this hub, this hive

where passersby at the bottom of the hill 

heard women laughing and singing

as if it was the time of their lives.

 

Take the lid off,

who knew Barnsley made such beauties?

Slicing, edging, rolling, trapping,

tins moulded into teddy bears (biker bears, ballet bears),

puppies, cottages, Egyptian mummies.

Tombs topped with companion animals. Collectable as gems, 

as grudges. Stored in cupboards, coal holes.

Top on spinning, bottom on spinning, you’d get in a rhythm.

We should stop keeping a lid on their skill,

if only we’d realised sooner

how much they were really worth.

 

Let’s take the lid off how

a woman’s finger ends suddenly appeared on a tray.

A man held half another’s arm on,

at the very least you’d be ringed with plasters.

No helmets, no safety,

but at the end of the week, 

a brown envelope with your pay.

So you’d keep a lid on it

and there’s Fridays at the Fitz,

half a lager and lime, rollers in since lunchtime,

you’re part of a family.

 

Take the lid off this heavy work, men’s work,

leaving your kids instructions to make their tea

when you took twilight shift.

Earning anything from a good Christmas

to a holiday, freedom, survival, a lull in the thrift.

No need to keep a lid on it,

always someone to pick you up and carry you,

put a pound in, bits for the babbies, take up the slack.

Men scaring you to giggles with warehouse ghosts

a line of ARP hats in an abandoned room;

the women of tin have got your back.

 

Take the lid off the world,

you might get a chance to travel beyond Barnsley,

even if you’re not a twinkly manager in a suit,

though the tea in a Twinings tin’s been further than you,

than the office girls sharpening boss’s pencils 

when their special buzzer sounds.

If you’d wanted to be an artist,

someone would have said “Don’t be daft, put a lid on it”

but Dana, the designer from New York,

and businessmen with briefcases visited

and shouted to the world about your craft.

 

Take the lid off this box in a box filled  

with flickering specks in the air and talk,

folded intricately as origami 

by Pat, Wendy and Regina in their tabards.

Day after day they felt that click.

Surely there’d always be tick 

and treasures in the stock room.

Carol’s wind had them digging up the drains once

but she kept a lid on it,

unlike the Diamond White she thought was slimming beer,

the magnificent beehive she built every day for years.

 

Take the lid off, blow the dust from photographs 

of factory girls on a bus to the races, an old lipstick,

a newspaper clipping about the can can-themed float

winning the Christmas Eve fancy dress prize.

Smell morning break rolls from Edna Coes.

taste the butchers’ hot pies.

Keep a lid on the longing shining their eyes

reflecting faces turned to craquelure.

They thought t’in’ole would be there for ever

We see now that they are precious 

edged and embossed as fancy tins. Moulded together.

 

Northern Women Will Laugh in the Face of Future Hard Times- as Usual #IWD

Saying that my current touring show “Where There’s Muck There’s Bras”  is about forgotten Northern women, makes it sound as if the amnesia is just historical- but, as one of my characters, Mother Shipton (who was really Ursula Sontheil, resilient daughter of a fifteen year old single mother) says “In order to be able to see the present we need to be able to see the past”. The forgotten women are also women of now. The women of the Northern of England are most badly hit by austerity, by London’s economic dominance over the country and, soon, by Brexit. 

Cultural discrimination against Northern accents (now recognised as part of a “class ceiling” impacting on those from working class backgrounds) comes in a context of the social and economic struggles faced by Northern women. Austerity has hit the North of England harder than any other part of the country, with cities and towns facing on average twice the level of cuts as councils in the South of England (Seven out of ten of the hardest hit cities and towns are in the North). Research also shows that austerity has hit women hardest- with 86% of the burden falling on them. So it is Northern women who are experiencing the greatest cumulative impact.  

The North will be deeply affected by Brexit too- with the North East the most badly hit, facing what would be a devastating 16% reduction in GDP in the event of a no-deal Brexit, and up to 9% in the event of leaving the single market. In all the post-Brexit scenarios modelled, London would suffer the least. All these statistics are likely to impact even more deeply on women in the North who are further marginalised by ethnicity, disability or sexuality.

Surely, however, it’s never been a better time to speak up as a Northern woman – what with influential figures like Lauren Laverne, Angela Rayner, Maxine Peake and Sarah Millican (and a Northern female Doctor Who!)? However, in general, for a mixture of the social and economic reasons outlined above, it is significantly harder for women based in the North of England to become journalists, academics, lawyers and politicians.

It’s hard enough to become actors, when drama schools discriminate on grounds of Northern accent and background as Jodie Whittaker has said recently to a Commons committee. (MP Tracy Brabin and Gloria de Piero’s Acting Up report shows the strong class bias in acting https://tracybrabinmp.com/2017/08/11/labours-acting-up-inquiry-says-its-time-to-bring-the-curtain-down-on-middle-class-dominance-in-the-performing-arts/, my own PhD research into stand up performers argued that there is also a cultural bias I called the “Northernness Effect”- https://www.chortle.co.uk/correspondents/2018/02/15/39149/is_it_because_im_northern%3f). 

MPs like South Shields’ Emma Lewell Buck, mocked for her accent in the Commons itself, have highlighted this prejudice; along with journalists like BBC Breakfast Business Correspondent Steph McGovern who was once told by a BBC boss that her accent made her sound stupid. 

What can you do in the face of miserable and terrifying statistics like these? So often, if you’re a Northern woman, you laugh. You laugh in the face of the crap and the absurdity and the uncertainty and the trauma.You laugh, as marginalised women have the world over, because what on earth else are you supposed to do?

Geneticists now say trauma is passed on in our DNA- I think the ability to laugh at it is passed on too, if not in your DNA then in the way generations of your family have dealt with the crap they’ve had to- whether as working class immigrants from countries like Pakistan or Poland looking for a better life in the North, or a line of families moving from the countryside to the cities to find work that aged or killed them prematurely, but gave them a living in a country whose establishment often used the “Barbaric, backwards” North trope to define itself as the “Progressive, rationalising” driver of the country. “Eeh, if you didn’t laugh, you’d cry”. I say in my show that those in the centres of power in the South East need to keep caricaturing Northerners as funny and tough so they don’t feel bad about our higher death rate and council cuts, and the lower spend on our housing, transport and arts. 

A recurring figure in my show is the music hall and sitcom star Hylda Baker (most known for playing Nellie Pledge in seventies sitcom Nearest and Dearest, as well as her roles in Saturday Night, Sunday Morning and Up the Junction). She wrote, produced and directed her own shows (including an all-female revue during the second world war), designed the sets and once stepped in to conduct the orchestra when a bandleader didn’t turn up. She was a pioneer. Her “Cynthia” routine in which she harangued a tall, silent man dressed as a woman with her signature mix of malapropisms (“I can say this without fear of contraception”) and surrealism inspired Victoria Wood’s Kimberley sketches. But she ended up in a nursing home with only seven people at her funeral and one-liner obituaries in newspapers despite her stature as one of the country’s biggest music hall, then sitcom stars. 

She stands for me as a symbol of how Northern women’s achievements are often overlooked and minimised (the usual double whammy of class and gender), and as a trickster figure who can still make us laugh at our own ridiculous aspirations (“I need electrocution lessons!”) and those who use the weight of tradition to justify our continuing marginalisation (“I see you sat there in your fine hysterical buildings”). In times to come we’re going to need to remember Hylda’s spirit more than ever. 

www.wheretheresmucktheresbras.com

www.katefox.co.uk

A Small DVLA-inspired Poem: Stuck in the Mud

IMG_1938.jpg

We have clearly muddied the waters

that is, they are no longer clear

because of the mud

it’s not that we’ve muddied them

which then somehow caused them

to run clear

that is, drivers, look, our use of language

is so excellent

that although we used to say you should notify us

of an Autism Spectrum Disorder

at the same time as that you should only notify us

if it affected your driving,

then changed it without telling anyone

to say that you should inform us

if you had an Autism Spectrum Disorder,

then got so much flack

that we changed it back,

we want you to have confidence

in how we steer language

as if it is a car being driven

safely and confidently inside the speed limit

and not like a rusty old ship

stuck in the mud,

where people still say “Disorder” instead of “Condition”,

or the clearly muddied waters

which are really quite hard

to see anything in,

anyway, hope that’s all perfectly clear now;

good.

Pros and Cons of An Adult Autism Diagnosis

I don’t find “Why did you get a diagnosis?” a simple question to answer. In a way perhaps “The cost-benefit analysis finally worked out in favour of trying to get one at the same time as I thought I actually would get diagnosed” is the truest. Just as I had conversations about whether I should get one with diagnosed autistic people before I did, now I have conversations with undiagnosed people trying to work out if they could, should, would. It is part of the reason I am “out” about being autistic- so those people can find me*

I might have to add another part to this blog because it’s turned out long again. Just going to put my “Pros and Cons” list first:

Pros and Cons of an Adult Autism Diagnosis

A List (partly personal, partly trying to apply it generally)

  • Pros of Diagnosis

    I’ve been so much nicer to myself since. These sensory differences? Real, not imagined. I have permission to avoid loud, busy places, take care of myself when I’m “peopled out”, recognise that no, not everyone finds having their nails filed excruciating. I’d already stopped trying to fit in with people as much because I recognised we’re surrounded by arbitrary “shoulds” but I take on board even fewer of them now. I probably have a lower threshold for socialising than most people and that’s okay- even though I enjoy it when I do it.

 

  • I’d already read quite a bit about autism, but have now read more and this has led to more self-understanding in other ways. Those odd three months where my brain was foggy after I was Glastonbury Poet in Residence and did an Edinburgh run? Probably a “burn out”; almost no doctor will tell you about them. I’m more likely to avoid them in future by doing the (still hard) thing of saying no to things that will be overloading, particularly hard for freelancers.

 

  • On the other hand, as a freelancer I applied for and got “Access to Work”; if you’re self-employed and fit the criteria (earning above £12k a year I think and able to prove it which I did with tax records) you can get DWP money to help with access needs. I was awarded 8 hours a week of support with admin, which has made a huge difference to my working life. Companies who employ autistic people can also apply for helpful things. The process was about a thousand times simpler than a PIP process would be.

 

  • I’ve also been awarded £10 thousand Arts Council money for a project called “Writing Autism” in which I start incorporating it into my practice as a poet and performer and have developmental conversations with other neurodiverse writers and artists. I have previously had Arts Council grants for other projects, but it may well be that the element of “diversity” was recognised in this one. Connected to this is the fact that, as a writer who often writes about self and identity, I now have a whole other layer of knowledge to add. I’m starting to write work from an autistic point of view- and (some) of the world is beginning to recognise it needs this.

 

  • Connections with other autistic people. I’ve mentioned this before- but it is so heartening and affirming to connect online or in person with other autistic people and find that things I previously thought were “just me” are in common.

 

  • Benefits to my relationship: my husband says he now doesn’t blame himself as much for things I find hard. He thought they were to do with him, but now realises they’re just me so takes them less personally. He thinks “What’s it like to have an autistic wife?” is an odd question though, because he sees me as just me and hasn’t read up massively on autism.

 

  • I can speak out on an issue I feel passionately and whose stereotypes I want to challenge, with the authority of experiencing it. These blogs, and my opinions on matters to do with (adult female autism at least) probably carry more weight, coming from an “officially diagnosed” autistic person. This has an exact counter-balancing downside though, which I’ll mention in the cons list.

 

Cons of diagnosis

  • People don’t know that much about autism. If I was a more archetypal autistic person maybe people would say “Of course” but they mostly just go “What! But you can do eye contact, are warm and chatty and funny”. As people are not always great at questioning their own assumptions, I presume that they often think I’m wrong about myself rather than that they’re wrong about autism. So, it could be that they now think I lack empathy, a sense of humour and the ability to socialise. Or it could be that they see I have these things and so am lying about my diagnosis. Or that I express these things differently but they don’t recognise a different communication/expressive style. Or it could be that if I did struggle with any of these things, they would assume it was an absolute and forever difficulty, rather than a consequence of a particular situation, sensory overload or because I was still (as everyone does) developing.

 

  • Actually- a simpler way to put this; the inaccurate things that people say about autism are now assumed to apply to ME. I feel a bit spoiled for admitting this.

 

  • Because of the stereotypes, and because society is geared towards the “normal”, then there is a lot of stigma. I’ve mentioned elsewhere how I’m still reeling because the head of a school with many autistic pupils told me autistic teachers and governors wouldn’t be able to hack it. She was generalising from her young teen pupils and hadn’t met enough autistic adults to recognise that many of us are imminently employable (Of course the figures about the low percentage of autistic people in employment don’t help. In some ways I don’t want these figures to change because they mean that help is funnelled towards autistic kids gaining valuable skills and opportunities. On the other hand the figures are bollocks, sorry, as they don’t take account of all the late-diagnosed adults and undiagnosed ones in work).

 

  • People take less notice of what I have to say. For someone who has spent their whole life trying to overcome a family that tried to squash my voice by learning to speak out and be heard, this is particularly devastating. Usually for example, academics answer my emails (as I’m a post grad, and even before my PhD). Now if I mention my autism, as when I was offering my services as an ethnographic researcher on autism projects they just don’t. Journalists don’t get back to me about autism stories- they do about other things (In general my autism narrative is neither enough about suffering or transcendence over remarkable odds to interest anyone). As autistic academic Melanie Yergeau points out, autists are seen as “Non-rhetors”. We are not reliable witnesses, we cannot be believed, we cannot speak properly. Can I mention again how devastating this is? I took the stage after a psychiatrist once who said autistic people are a “genetic mess” and was expected to command the audience (I did obv). My sudden flood of autism blogs has been in reaction to this silencing and othering. I’m going to have to write myself into being. Again.

 

  • We are vulnerable in a society which is increasingly hostile to people who are, or are perceived as disabled. For example, the DVLA has suddenly changed its rules to say that all autistic people now have to declare their condition and our GP has to let them know whether we’re fit to drive  This decision, made on literally no evidence, is the thin end of a wedge. As a two year old twin to a single mum, the fact my mother had support from her own mother, then married her boss enabled me to evade too much scrutiny from the authorities, despite our poverty. As a 16 year old who lived in a bedsit, the fact that I was doing A-levels and “good at school” enabled me to evade too much scrutiny from social services who didn’t help, but didn’t hinder. I’ve always been just privileged enough- being white helping too- to avoid being funnelled into potentially damaging services. Now, I may have to fight for the driving licence I got via test, just because a government committee who have wrongly classed autism as a mental health/medical condition (Which can occur suddenly, or change) may have to ask my (literally clueless about autism GP) to put me on a list. It gives a whole new complexion to my decision to be “out” about autism in these blogs (though of course getting a diagnosis and being out are usually two different things- the driving issue is the only thing I know of where declaration is compulsory). ( UPDATE: Thank goodness- after a weekend of activism, mainly via Twitter and intensively contacting the press and organisations from autistic people such as Ann Memmott and Laura James, with the support of the National Autistic Society and Police Autism Federation as well as MPs Jess Phillips and Jo Platt, the DVLA has reverted to saying that we only have to notify if it affects our driving and apologised for the chaos).

 

*****

It is important to know that in my list, the cons are mostly external factors about how autistic people are perceived or treated, and are very much dependent on where and when you are.

The pros are more internal factors, about how you perceive yourself and the relationship you have with others around expressing your identity.

The context for my diagnosis is that it took place in a country, the U.K, which has had several years of austerity under a Conservative government. Mental health services, social services and education are under great strain and threat of privatisation. The market rules. Neither schools, nor doctors surgeries, nor social services are rushing to have people who are difficult to categorise (autism is not in itself a learning disability, not a mental health issue, nor even a medical condition but sometimes autistic people have multiple complex support needs) on their books. When conditions are treated by the application of simply signposted “pathways” and Cognitive Behavioural Therapy which relies on people responding in a “normal” way to psychological stimuli designed to make them more productive citizens, then autism requires time, knowledge and skill beyond the cursory (if any) training offered to most medical/social services/education professionals.

At the same time, as there is increasing awareness nationally and internationally that autism is not just a thing affecting non-verbal boys, there is more recognition of “atypical” (but not really atypical) presentations of autism. In other words, more people are now able to be diagnosed via tools like the splendidly named “DISCO” which was developed at the Lorna Wing centre in order to pick up autism in women. The neurodiversity movement celebrates brain-differences and encourages people to embrace neurodevelopment conditions as diversities rather than disabilities. In mainstream culture, including corporate culture there is increasing recognition of the value of diversity. In my own field, the arts, the Arts Council actually factors in how far organisations embrace difference and otherness into the funding they give with the “Creative Case” for diversity. It can certainly be argued, however,  that much of this embrace of diversity is performative, surface-level, going too slowly and still geared to producing “productive citizens” in a capitalist system.

I do wonder if I was perhaps a bit swept away by the general “Difference is now good!” narrative, and failed to recognise how very stigmatised and misunderstood autism still actually is – not least because of the complex (and artificial) divide between autistic people with very high support needs and those with (generally but not always) lower support needs. This unhelpfully sees parents of high support-need autistic children who still feel unheard because of all the issues around health and social services, pitted against autistic people who would once have got a diagnosis of “Aspergers” and who have generally battled and muddled through life without needing support enough to seem as if they’re not at any disadvantage in a society mostly not designed for them.

Perhaps the key question around diagnosis then is- how much leeway do you have (in your current personal and working life and your social position) to deploy your knowledge about yourself? How much do you want, how much do you need? A society focused on the individual as ours is, is in favour of facilitating this, but conversely, it also deplores the idea that there are people who may need support or who may not contribute in the approved ways. Also, what is true in your situation now may not be true in future. These are the paradoxes we must negotiate when taking on something as complex, as potentially liberating, as potentially oppressive as an official autism diagnosis…

 

*A brief description of my actual path to diagnosis; I went to my GP with a list of reasons why I thought I was. He sent me home with the AQ-10 screening questionnaire of ten questions. I pointed out this questionnaire was designed for boys originally and certainly not for adult women. It asks questions like “Do you have trouble telling stories” to someone who makes a living as a professional writer and performer. I wrote a lot of things on the form about how inaccurate it was. Funnily enough this didn’t cause me to get a diagnosis then and there. He asked me to fill in another. I was aware I needed to get 6 out of 10 to get a referral and wasn’t sure I could lie to get it (yep- again, probably should have been given a diagnosis then and there…). He then found that the Tuke Centre in York, the nearest NHS diagnostic hub had a ten month waiting list. Even he was astonished at this.

Meantime I’d rung them up and found no reason to think they had any particular clue about adult women and diagnosis. Most of my life I would not have a spare £1000 but at this point, doing a funded PhD and some other work, I did. I spoke to a psychologist at the Tizard Centre at the University of Kent as I knew from someone else that they were good and used the tools developed at the Lorna Wing Centre (I knew about these because I visited them in 2011 when I was originally thinking of doing a comedy show about me seeking a diagnosis). They needed an “informant”, and lacking accessible family, the psychologist spoke to my husband for a couple of hours on the phone the week before. Then I went down to Kent and had an interview about my childhood and life now of about four hours, including a couple of (odd) tasks like narrating a story to accompany a children’s picture book. I also took some school reports and a couple of exercise books. At the end of it, the psychologist told me I met the criteria for an Autism Spectrum Condition. 

I was relieved really to not be deluded and it suddenly made this thing that had not been quite real, real. I’m aware that this is a complicated privilege. I was able to afford this. Many people are not, or end up going to professionals less trained in the ways adults/women present. Self-diagnosis is valid. There’s a very strong argument that we shouldn’t need medical diagnosis for something that isn’t a medical condition. Possibly there needs to be an alternative identification process though, as often people feel the need for confirmation from someone else (More rigorous than me chatting to them for five minutes and going “Yep, you are”- though I bet you a million pounds that would hold up against any clinical methods available).

Do You Know These Authors Who “Divide their Time”?

(Commission from The Verb on Radio 3 about writers who “divide their time” usually between cultural capitals). https://www.bbc.co.uk/programmes/m0002sbs

Craig McUrgent is a Booker prize winning novelist who divides his time between London and a peasant village in the Auvergne where he dines simply on good bread, wine and stories about his time guest lecturing at Harvard.

David Conspiracy, thriller writer, divides his time between his iPhone and his increasingly irate husband.

His next project “My Digital Rehab” will be written from a small monastery in Tibet and sent to his publisher via homing eagle.

Anthropologist and Times columnist Justinian Malfoy divides his time between being a late anthroposcene era human and a mountain goat called Trevor. He believes that Being Animal tells us everything we need to know about Being Human and that people would be surprised at how delicious turnips actually are.

Performance poet Kai Artistry divides his time between a canal boat and his flat in Dalston. Like his words, he is unmoored and flowing, whilst also being conveniently located within Zone Two.

Stacey Drystone is a romantic novelist who divides her time between Bolton and Wolverhampton since the divorce and is soon to publish a side project titled “The Possibility of Love in the Service Stations of the M6”.

Photographer and commentator Terry Creepy divides his time between Florida and Thailand because he really likes Asian street food, honestly.

Tapani Peloton is a Scandinavian designer and author who divides his time between Stockholm and his family’s summer island in the North Sea. Their book “Sissu for Sissies” details the latest Scandi-lifestyle phenomenon in which people are encouraged to just get on with their awful lives, whilst occasionally killing a bear.

Actor and debut novelist Reece Upstart divides his time between Sunderland and Los Angeles, because one day Martin Scorsese will definitely answer the door.

Chronologist and contrarian Tamara Certain, divides her time into days, hours, minutes and seconds and suggests that authors should do the same.