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.

How to Work With/For An Autistic Person (from arts organisations to doctors and more)

I am writing this from a position of still-learning about others*, increasing self-knowledge and a growing recognition that the preconceptions (including, until recently, my own) many people have about autistic people are either sketchy or plain wrong.

Here’s some stuff I wish people knew. At the same time, I could include about a thousand caveats. I am just one person and nearly everything that applies to one autistic person might not apply to another. Some useful general principles though (this blog got quite long with addenda, but the main bit is the seven points below) :

    Nothing about us, without us. This is the mantra of the social model of disability. It is properly weird I think, how many events about autism assume that autistic people won’t be able to participate. I’ve been asked to sort a panel about autism but there was surprise when I said autistic people would probably want to come. Yes, possibly non-verbal children may find it harder to attend (depending what it is) but the majority of autistic people are not non verbal children (which means it’s also crucial to make sure their voices are heard too). There are increasing numbers of autistic people partly because; autistic children grow up (who knew?) and also, more recognition of the large numbers of previously undiagnosed adult women (and men). The official count is 1 in 100. My estimate, based on observation, common sense and pattern-spotting is that it’s nearer 1 in 30 (one in every school class). Actually the bit above was so important it deserves it’s own subheading:
    There are more autistic adults in the world than autistic children- if you work with adults you will be working with/for autistic adults at some point. In fact you already are.
    Think about sensory issues. As a giant generalisation, sensory issues are of more immediate importance to autistic people than social issues. That’s because social issues often boil down to non-autistic people saying “We wish they would socialise more like us”. Also, as a giant generalisation- many autistic people don’t like loud noises, bright lights and busy environments (some may seek out these things and enjoy the stimulation). Also in general, an open plan office is not an autistic person’s happy place. They need to be able to ask for adjustments. See also, doctor’s waiting rooms etc. No wonder a stage is my happy place – I get to control the lighting and the sound and be the only one speaking…At a show they might need to know if bright lights and loud noises are going to happen. (It’s not like they’ll necessarily run off and freak out though. It may just be very unpleasant or tire them out. I used to think nightclubs made everyone think someone had been hammering on their skull even if they hadn’t drunk anything). Also don’t let autistic people go hungry, thirsty or cold but- you know, don’t let anyone go hungry, thirsty or cold.
    Ask about their preferred mode of communication. Most autistic people I know, and many socially anxious people (or those who are both) hate telephones. I used to use one about 50 times a day in my job as a radio journalist, and will take calls, particularly from media organisations (who like to know whether you’re “a good talker”) but I don’t like it really. It’s hard not being able to see someone’s face and try work out the conversational cues. Phone calls also make me tired, don’t know why. Many autistic people prefer having more processing time to think things through without distractions. (I have felt like I’m not fitting in with many on this as I seem to process verbal things/ideas at lightning speed unless I’m tired, but visual things much more slowly. I read a book at about four times the speed of my husband but take ages to get through the page of a comic).
  • Assume capacity. I have certainly had some trepidation when meeting (openly) autistic people for the first time and realise that’s my own internalised ableism. Autistic doesn’t mean stupid or lacking comprehension. Some people ( a minority- around 10%) can have associated learning disabilities and may have different needs around receiving and processing information. Much public discourse on autism is based around a deficits model (which is oddly balanced with another narrative about autistic super powers). In fact, a key distinctive thing about autism is the “spiky profile” in which autistic people have high capabilities in some areas and struggle in others- most people have abilities which are spread more evenly. So conversely, just because someone is great at say, working out your marketing strategy, doesn’t mean they’ll be great at planning a meal. Let them tell you about their abilities.
  • Don’t Make Socialising Compulsory. Going to the pub with you, or to dinner with you and your workmates might be the nicest thing an autistic person could think of to do that day. Or it might be the thing that tips their spent energy over the edge because they’re peopled out. Don’t assume they can’t do, or don’t like people. On the other hand, don’t make work decisions or the passing of information/developing or relationships rely on somebody’s fluctuating urge and capacity to have unstructured conversations with people in often noisy environments. There are lots of other people for whom this is an accessibility issue too (the social anxious, those with caring responsibilities etc).
  • Be Clear. Again, I’m fairly sure this is good practice for everyone but…if you say you’re going to do something, do it. Be honest about reasons for things (autistic people tend to be excellent bullshit detectors-but can also get stuck when they know they’re being lied to-as there’s a disjunct in the information coming in). Let people know what will be happening, where and when. Many autistic people have high levels of anxiety and like to have variables reduced. Some autistic people like to have “visual stories” which show, in pictures, what an environment they’re going to enter is like (or what a show will be like). Whilst I think I have a high, learned capacity for spontaneity, change and chaos (and would never think to ask for the reasonable accommodation of a visual guide), I find myself a little bit antsy just now because an event I’m part of hasn’t sent a running order, as would be the norm and I therefore can’t really picture the structure of it in advance.
  • Don’t expect them to have “always-on”, “always-available” energy levels. And again, I don’t think this should be expected of anybody, though it often is in this neoliberal economy. I think of my university colleagues bowed under the weight of endless emails and marking. “Gosh, you replied quickly” someone will say when I instantly respond to an email. Then they’re confused when a simple request isn’t answered for weeks. My levels of whelm (over or under) vary considerably depending on what I’ve been doing. In 2017 I made two Radio 4 shows, did a complicated poetry residency, directed an hour long show for a BBC festival and produced three papers/chapters as well as submitting my PhD. I was still generally less tired/over capacity on a day to day basis than the other week when I was performing shows whilst having mild flu. Agree work/contact times if necessary, but don’t bombard autistic (any) people. Everybody needs downtime and radio silence.
  • Don’t read Honest or Brisk as Rude. This is a particularly difficult one. I’ve just been moved to add it after reading about an (undiagnosed) autistic person being dismissed from their job for making their feelings clear about a particular workplace issue. I’ve advised a friend working for a big corporation to think about diagnosis because she’s twice been disciplined for being “abrupt” with people. Just because someone doesn’t hedge their communications with layers of social nicety (or are brusque on email) doesn’t mean they’re deliberately being rude (this isn’t to do down the importance of working relationships or suggest that autistic people can’t do this stuff, just that simply failing to “perform politeness” in the same way as someone else is not necessarily abusiveness or aggression)

I feel like I could go on but then I’d be getting in to a “101 of autistic people” and that’s not what this post was meant to be. Really I just wanted to share some very basic principles for organisations and people working with and for autistic people, and an approach that I wish/hope such organisations and people will take with me. I’ve missed out some of the things that arise from late diagnosis and that feel like personal quirks/idiosyncrasies:

Don’t stop hugging me if you always did, though I suppose asking first is nice for many people/Don’t assume I’m anxious about new situations- I’m forty three, I’ve encountered many variations of most situations I find myself in and I like novelty anyway/Don’t mention Mark blooming Haddon whose book wasn’t even about Aspergers/autism/Don’t tell me I’m not like your child- you’re not like my Uncle Trevor.

How Much Does The Organisation Know About Autism?

I should say that currently I’ve either worked (as an “out” person) with people and organisations whose knowledge about autism fits into one of the following categories, and maybe organisations would benefit from working out which one they’re actually in:

People/organisations who recognise they don’t know anything but want to know more about autism
(Am helping a couple of literature festivals in this category put on events. It’s a bit scary because I’m potentially the “expert” but I’m still learning- and also, they’re still their events and I suspect there’s quite a lot that I’ll consider essential and they won’t. I’ve already failed to persuade a poetry slam after one event to operate as a “relaxed” slam and if you can’t persuade a poetry slam to embrace diversity then I suspect things are harder than I think (or I’m less good at persuading). Anyway, they’re doing right to approach actually autistic people. A good autistic organisation would also put them in touch with some rather than suggest events aimed at particular communities are organised without any being involved.

Others who think they know stuff about autism, but don’t.
Unfortunately many of the medical or social services who are still using the outdated Simon Baron Cohen paradigm of autism as a thing where “male and female” brains split the world into “empathisers and systematisers”, or have only ever read a list of diagnostic criteria and tell people that autistic people have no empathy or theory of mind, fall into this category. Many cultural representations are based on it too. It can also mean that some people/organisations with a working knowledge of disability and diversity principles may apply them across to autism without recognising some distinctions (See for example, person first language- as in, people with autism rather than autistic people. The National Autistic Society did a poll to confirm that most adults prefer “autistic person” as they see it as part of their identity).

People who are really good at working with me/autistic people because they think about access in everything they do and are just really considerate, even if they don’t know it
The charity First Story for example, who put writers into schools, fall into this category. Actually, quite a lot of arts organisations do, at their best. The ones who take time to set up projects, let writers know detailed information about events and timetables, ask about preferences, communicate quickly and reliably, make sure you have a quiet room before an event and time and space to do your job. It’s just being a good employer really.

Organisations/people who are not that good at working with anyone, never mind autistic people
Obviously that could be anyone from the DWP, to the tiny arts organisation that’s barely got time and resources to deliver a letter. I’m not as sympathetic as I used to be to small organisations who “Just do so much on so little” because I think of all the people they work with who are going to have a crap time as a result. Everyone suffers from toxic or incompetent organisations- there is a particular shape to autistic suffering in these circumstances I think, which is around lack of certainty and clarity in communication and planning.

Autistic-led organisations/autistic people:
Ideally they will be able have a lot of the direct knowledge and useful tips that are so lacking in other places. If a volunteer-run organisation they may still have a lack of time and resources though (see above). I’m not sure how great I’d be at being able to deliver as an employer, despite my theoretical knowledge. I’d need to be well-supported or able to partner with an organisation/people whose stability and genuine openness to learning and collaboration I could trust.

NB: Although I would love the National Autistic Society to show more awareness of power and micro aggressions and things, their journey from an organisation representing a small group of autistic parents to one trying to represent autistic adults (and advocates) and children is interesting and developing. There is still not enough autistic governance in organisations for autistic people though. There are autistic lawyers, doctors, architects, professors, so there’s no excuse (though of course, it would then be about balancing the type of voices who are heard. A perennial challenge. But at the moment it usually isn’t enough autistic ones)

*I have had three particularly crucial in-person encounters with groups of autistic people, apart from the useful learning every day on Twitter (including the #ActuallyAutistic hashtag) and via blogs and Facebook groups. That’s in addition to several meet ups (and future plans are afoot) with excellent autistic poets/academics Joanne Limburg (who wrote the Bloodaxe collection The Autistic Alice) and James McGrath (whose crucial “Naming Adult Autism” was published last year) and who have been very supportive and open ahead of my own diagnosis journey.

These were a post-diagnosis group I went to run by Sonny Hallett and Fergus Murray in Edinburgh. They recognised how crucial it is to have an autistic-led resource, given the deficit-focused, often pathologising, approach of medic-run services. I was terrified walking into the meeting room that I’d be chucked out as not a “proper” autistic person. As it is, there was a wide spread of people. I wouldn’t say it was like a meeting of, I dunno, corporate advertising executives or Apprentice contestants or something in terms of the slick surface sociability on display, but it was not dissimilar to a writer’s group perhaps. There were more tinted glasses and noise-cancelling headphones though. I was left feeling somewhere in-between the world of neurotypical ways and autistic ways, not quite sure which fit me best and which I was most adapted to being without (or with). I also garnered practical tips and vocabulary which I would never have picked up from post-diagnostic support given by psychologists (not that there was any available to me anyway).

There were also the excellent women and men, mostly fellow performers I met at the Festival of Autism and the Arts at the University of Kent in 2017 (It’s happening again this year and I’ll be trying out a new Dr Who-themed show). Particularly meeting a group of late-diagnosed women who “passed” as “well” as I do and who were speaking up for their fellow autists (thank you in particular to Annette Foster, George Watts and Sarah Saeed) made me want to add my voice- and it also gave me confidence that I might actually get a diagnosis. In fact, I went to the Tizard Centre at the University of Kent for that, on George’s recommendation and will write about that tomorrow in my final blog of this impromptu series.

Then there’s been the brilliant steering group and facilitators on the “Playing A/Part” project, using creative methods to work with autistic girls, again at the University of Kent. Seeing how fellow professional creatives like Sonia Boué and Katherine May (whose Aspergers memoir “The Electricity of Every Living Thing is a must) ploughed the difficult path of doing their excellent creative thing in an environment rendered more ableist just because we had disclosed our diagnoses was heartening and inspiring. Again, this is not to mention the brilliant Jamie and Lion, Robyn Steward and Dean Beadle who I’ve spoken at events with, as well as the sociologist Damian Milton and others (It is perhaps odd that I’m constructing a biography of an autistic network here. It feels important. It has also been my way into this world- meeting other autistic people who are already in worlds I am familiar with, like the arts and academia and not everybody will have their own “in”. Though thank goodness for social media in that case).

A Conventionally Unconventional Marriage: Autism Week Blog Five

Since my teens I’ve only had three relationship modes: Very unhappily single and engaged in a pointless infatuation with an inappropriate person. Varyingly happily single (whilst wondering how on earth people actually manage to read or transmit signals sufficiently well to enter into relationships or hook ups) . Or in a monogamous relationship with a generally supportive male human. When I add it up, I’ve actually been in the latter state for most of the time (Across three relationships for about twenty years in total, latterly my twelve year partnership with my husband). That surprises me in a way as the more negative modes have cast a long shadow.

I wanted to write this blog as a thread by the late-diagnosed comedy writer Sara Gibbs recently resurfaced on Twitter. She talked about how much her husband does for her in terms of domestic and other support, so that she can be a professional writer. She says it can be shameful to admit to the amount of support she has, but that she could either look after herself or work,not easily both alone. Other autistic women added their voices saying they were glad someone had said this openly. They also had partners who took elements of a caring role, or they were able to buy in professional help. Being able to work and be out in the world and sort out domestic life as well was just too demanding of their mental, emotional and physical resources, mostly in terms of energy.

Difficult to admit on several counts; the ability to be totally independent is highly valued, especially if you’re a professional; these would be autistic women perceived as very “high functioning” in the erroneous and reifying language of functioning levels; there’s the gender politics of men operating in a domestically supportive role for women which is still stigmatised and of course, it’s a privilege in a way.

Not every autistic person, not every person full stop who needs one, is able to find and sustain a relationship with someone who will take on this role (it is partly a privilege but partly also I would suggest, luck and partly possibly because of some learned skills we’re not supposed to be able to deploy).

For most of our relationship, I have earned the majority of the money and my husband has done the majority of the domestic tasks. (He cooks nearly all our meals, does the washing, does a lot of the cleaning and nearly all the dog walking and feeding. Not so much the vacuuming, I do love a good vacuum, ah, when those bits vanish satisfying from a carpet…). I should say that since I was sixteen I’ve also lived on my own for twelve out of the subsequent twenty seven years, often happily even if not in great domestic order, efficiency or self-feeding.

Since my diagnosis I’d say we’re both much more aware and conscious of the level of partnership working that this involves- though there is also an element of my husband as my carer. That feels odd to write though. I’m not sure I’m entirely happy with that description. I suspect because of a level of inequality and dependence it implies- and because it’s not quite socially acceptable (including to me). I would want to rush to qualify that statement by pointing out that I generally function better “out in the world” than my husband. Also, perhaps by pointing out that many relationships, including ours, have particular phases or contexts in which a “carer” role is shared out, shifts and fluctuates according to the situation. I didn’t consciously enter into a relationship on this basis when we fell in love- but since when has “falling in love” ever been about conscious needs and processes?

Being in the world of work and the commodification of our creative talents (he is an excellent writer) is more likely to bring me alive and stimulate me, whilst it is more likely to upset and drain him. He has chronic depression. We are dividing our household tasks sensibly and according to ability. Having said that, I’m sure he would be happy to be magically relieved of many of them, and I would love to be magically relieved of the pressure to make sure we have an income. We had a stint of couples counselling a few years ago primarily because we struggled with different ways of conflict and one of the key useful outcomes was that she suggested we open a joint account and recognise the important contributions both of us were making to our lifestyle, not just me (given that the breadwinning role is still more highly valued, no matter which gender is doing it). We still haven’t quite resolved how we can both best have time to use our creative abilities though.

We have a lot in common, many shared interests, have lots to talk about, make each other laugh and are generally kind to each other. We do the complicated thing that is loving each other- for love is a verb as well as a noun- and part of it is (given that we’ve officially committed to each other) working out ways to partner each other in this sometimes joyous, sometimes hostile world. A world that doesn’t necessarily value the ways in which we help make each others lives better and more manageable.

That may not always result in us contributing as much as we can to the neoliberal capitalist system we find ourselves in which values productivity (not to mention the production of future workers neither of us want in the shape of human children) and sees that as best expressed by two people flogging themselves to death. Instead we’re gently and kindly aiming for as much mutual fulfilment as possible whilst pursuing really quite conventional goals (being a heterosexual, married couple of writers is not exactly bringing down the patriarchal system) in a way that is unconventional enough to rarely be talked about.

But tell us about your worst autistic day…

There hasn’t been much suffering yet in your week of autism blogs Kate. I mean, people will say you’re suffering from autism, that you’ve got a disease (aarrgh, neither thing is true, though yes, both have been said to me), but you haven’t really conveyed that yet. Why not? Are you one of those celebratory types who only has good things to say? I expect it’s because yours is just so very mild, it’s barely there. Think of a non verbal boy who has to be restrained, who has meltdowns, is incontinent, bites people. He must have what, 1000 kilojoules of autism in his blood, whereas you probably have about 100 (this is also not a thing, nope. There is no autism in anyone’s blood)*. Anyway, show us your pain, otherwise how will we know you’ve even got any autism at all?

In a way this is what a diagnostic interview requires. It’s also what most media and cultural accounts of autism require. It’s also, I would suggest, overdone. Also possibly damaging to my career and self-image. On the other hand, I do want to be truthful. Let’s see if I can oblige:

My Worst Day As An Autistic Person. 1.

Do I mean from my own point of view? In some ways it was when I had to get up and do a talk at an autism professionals conference after a psychiatrist who had just said that “autistic people are a genetic mess” and I realised that my hard won right to be listened to had been considerably eroded by a diagnosis I had voluntarily acquired. Or the day when I was on a project with some autism Mums who were clearly quite annoyed that myself and my (at that moment also articulate) autistic colleagues thought we were in any way “like their children”**, didn’t believe we should be asking for things like fluorescent lights to be dimmed, and then had the school’s headteacher tell me to my face that she wouldn’t employ autistic teachers because they’d get too anxious.

But, if we’re just talking general, day to day living then it might be a day when I’ve failed to recognise several people and made them think I don’t care who they are, had to sit in a very noisy, fluorescently lit place for ages and got a loud buzzing in my head, been talked to or at for ages in a way that didn’t have compensatory enjoyment and meant I got a very tired brain, then needed something simple to make me feel better like a meal or a lie down or to write an email, but not been able to stir myself to do it. That doesn’t sound too bad does it? We all have days like that…


My Worst Day as An Autistic Person. 2.

I’ll have another crack at answering that by looking further into the past. Perhaps it was one of the days when I was 16 and left home with a 46 year old man who was abusive on a number of levels- and then when I came back, I couldn’t live with my (dysfunctional and abusive) family anymore and did my A-levels while on income support in a bedsit, had bulimia and no sense whatsoever of how to keep a home or access or accept emotional support. Yes, surely that’s more like it. Misery memoir stuff. There is increasing research about the degree to which young autistic women in particular suffer higher levels of sexual abuse and grooming, due to their difficulty in reading people and situations and their isolation.

On the other hand, I now tend to think that being autistic shielded me from some of the worst of what the situation could have led to (In that I preferred being on my own in quiet places and was fairly unconscious at the time of most negative feelings I might have been experiencing including sadness or anxiety). Also, as one of twins born to a working class single mother, some of what we experienced will have had intersecting and complex social and historical causes. (Complicatedly I think she herself was autistic and in turn groomed and abused by an older, bullying husband, but as you can’t diagnose the dead, this’ll have to stand as speculation).

My Worst Day as An Autistic Person. 3.

Given that so much of what’s difficult about autism is actually not fitting in to the expectations and norms of others, it’s perfectly possibly that my worst day as an autistic person was actually one that I thought was brilliant. Maybe I’d enjoyed hyper focusing on a book for a few hours and been happily spotting patterns about something I was particularly interested in at the time. Perhaps I’d have written a poem I was particularly pleased with. Been in a “flow” state while talking to someone about one of my interests and experienced time passing enormously quickly. Been made a lovely, nutritionally balanced tea by someone who wasn’t me.

However, unbeknownst to me, maybe someone was making a decision about my future. Shall we pick Kate for that job she’d be really good at? Ah, no, not Kate. Her hair is weird, her clothing calls attention to itself. Also, she’s likeable but a bit odd. She doesn’t come out for drinks with everybody. There’s an indefinable otherness about her. She’s not like the other people we usually put in these positions. Remember that meeting where she said exactly what she thought and what everybody else was thinking but that nobody is ever supposed to say? Also how she remembers your dog’s name but not your child’s? No, she should go off and be a poet instead where criteria like what we’re applying now will (rarely) matter…

*Autism is NOT like paralysis. There’s not actually something ranging from the equivalent of mild paralysis where your toes are a bit stiff, to severe paralysis where most of your body can’t move. The coiners of the word “spectrum” would not use that word today (they recognise that “But we’re ALL on the spectrum is erroneous and unhelpful)- they’re now looking more at recognising “dimensions” in which your different areas of your being are affected in different ways in different situations.

Partly this comes back to – autism is not a “thing”- it’s not a disease, and you can’t peer at it under a microscope. It’s not like somebody like me who presents shows on the radio only has 100 kilojoules of autism in their blood whereas a boy who can’t currently speak, has regular meltdowns and bites people is like that because they have 1000 kilojoules in their blood.

Neither of us have any kilojoules of autism in our blood. Quite a lot of the way we have developed, and the orientation our brains and bodies have to the world is similar- but I have much lower support needs and I do not have other co-occurring conditions which impede my ability to acquire something that looks like “normal” social functioning.

**The fact that I have acquired the ability to “pass” as not-autistic and to not need support in many situations is not necessarily a better predictor of a better outcome for my life on certain measures. In fact, my “mild” autism means I’m nine times more likely to commit suicide than average and 80% more likely to be bullied. Both measures higher than for our boy in the above footnote.

On the other hand, I’m more likely to present a radio show, get married and complete a PhD, as I have. Not necessarily relevant to our actual happiness and fulfilment levels, but certainly in terms of a capitalist system that values what you are able to earn and the fact that you might be less likely to call on other people’s time to help you achieve any happiness and fulfilment you do find, then I am apparently more useful to society- I disagree with this by the by. However, it’s alright for me to say that. I’m not the one constantly having to prove my worth under this system (or have it proved by my carers).

Autism Now is Like Radio Two 20 Years Ago

Quantum physicist Max Planck knew a thing or two about new scientific paradigms- some of his discoveries, based on observations, meant that classical theories about thermodynamics had to be reconstructed from the ground up. He said New scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”  

 

I also think of this as the Radio Two Theory. Twenty-odd years ago, Radio Two played Cilla Blacks Anyone Who Had a Heart on a loop, They wanted to attract younger listeners because their old ones were literally dying, but they didnt want to scare the older ones off either. Nowadays theres Zoe Ball on Breakfast, Sara Cox on Drive but weve still got older voices like Ken Bruce whove been part of the old thermodynamic paradigm. Happy days. 

 

I think theories of autism are a bit like this. New observations (about women, say) mean that not all the old theories fit. But a lot of people are wedded to the idea that autistic people only look, talk and act in particular ways and its taking a while to get them to recognise they currently only have a partial picture. 

 

Thats not to mention that autism is still often seen as something Other and Lesser, not part of the glorious spectrum of humanity and its diverse brains. Some scientists are still faffing around with autistic mice hoping to find a cure for an enormously heterogeneous condition which cannot ever be isolated to even a few genes. Its a complex condition which describes a particular way of being in the world and processing the world. Its not just one thing. 

 

However, its not possible to only use hard science to understand such a deeply social phenomenon. As well as being an explanation for neurological differences, the idea of autism is a way of categorising people. And like all categorisations of people, it comes with implicit judgments. With autism, the judgment can be You require assistance to be in the social world, also the social world appears to be distressing to you- were not sure about the value of unhappy dependents in a neo liberal capitalist system (thats a judgment particularly applied to non verbal autistic children and internalised, unhappily by parents) 

 

or Productive citizens aspire to values of middle class normality, emotional intelligence and the ability to navigate complex social arenas, get on it people (which particularly applies to- well everyone with any difference at all really, but in this case to adults whose orientations and preferences dont lend themselves to hearing the messages about the sort of compliant citizen they should be). 

 

People who advocate for neurodiversity are recognising and resisting these implicit value judgments. But it will always also be necessary to recognise the wider power battles that these judgments hold. Isnt it okay for some people to be dependent and some to be autonomous? Is autonomy possible anyway- for anyone? Why might governments have an interest in literally locking up some people who dont do citizenship in a way they recognise? Cant we value enjoyment of life on its own terms? When does love conquers all become Youd better do emotional labour in a way I recognise- or else?

 

I often hear conversations in which the old, dying paradigms clash with newer ones around autism. The other day I was sat in a staffroom in a museum where I was about to run a poetry workshop for some school children. A museum worker spoke about a visit by an autism charity, to see how they could make museums more accessible. My ears pricked up. Yes, one of the main things they mentioned was how many of the kids have nappies so they need somewhere to change them she said. Ah. That was part of the autism accessibility conversation, but not all of it and there was no sense there could possibly be an autistic adult in the room (or in their museum). Meanwhile, a teacher there said carefully that they had several autistic children in school, whereas they used to have a separate unit. Some of them needed hardly any help, some needed more help. It was almost miraculous that she wasnt using high functioning or low functioning language, or talking about severe or mild autism. It sounded to me like the children she was talking about were being accepted on their own terms.  I felt I could have said something to her about my diagnosis and been recognised. 

 

Its often said that you have to meet people where they are and I can find it really difficult when where they are is still only knowing about a dying paradigm of autism. Youre Radio 2 twenty years ago! I want to say. I wanted to say it to the makers of a recent play who used a puppet to play an autistic child whilst their parents were played by human actors.  Some people dont get it. Will never get it. Brutally we just have towait for them to die. Some will be up for Zoe Ball on Breakfast as long as theres Ken Bruce. And some are already ahead of us all, way into a future where radio is probably beamed direct into our neurons but theres still Cilla Black Anyone Who Had a Heart playing on demand for anyone who wants it.

NOT the social anthropologist. Though confusingly I did an ethnographic PhD.