The wonderful Kate Fox – stand-up poet, teacher, performer, wordsmith and social commentator (with a particular interest in Northernness) – has kindly given us permission to repost this wonderful piece she wrote – Me- Autistic? As If… following her recent late diagnosis of ASD.
It’s inspiring to see a high profile and wonderfully creative and inventive woman out there and counted in changing perceptions and narrow ideas of what autism can look like. We’re really looking forward to Kate contributing to Hashtagnofilter in a podcast chat with Vicky at some point this autumn. Meanwhile, enjoy this! >
I would still be that poet who made a leap of imagination that caused your brain to jump,
the comedian who made you laugh (sometimes),
the facilitator who ran that writing workshop with empathy and care and cried and laughed with several strangers over the things we dared express,
the girl who grew up being told not to be “too big for her boots”
and would cringe at boasting about any of the above things in order to challenge the stereotypes of autism embodied in all those geeky, awkward men from Rain Man, to Christopher in a Curious Incident of the Dog in the Nighttime to Sheldon Cooper in Big Bang Theory.
I wouldn’t be Saga in the Bridge either, though how I would want her trousers and crime-fighting skills, and empathise with her bafflement at social rules.
If I was autistic I’d be puzzled at how people told me I wasn’t like their child. Do they expect any of their adult friends to be like their children? I imagine that’s why we’re not having this conversation with their kids over a few glasses of wine and some filthy jokes about rabbits.
I’d find quiet carriages too loud, administration arduous and if I was interested in things I’d be very interested, but if not then forget it.
If I was autistic then that Facebook friend who said he told the “stupid psychologist” that his daughter couldn’t have Aspergers because she’s doing an A-level in English Literature probably wouldn’t have thought it made sense to say that to someone who works with words for a living.
I’d be bad at multi tasking, excellent at hyper-focusing and full of sensory sensitivities meaning that I’m expert at finding clothes that are both comfy AND sparkly.
If I was autistic then I’d confront the mire of language that means that for most people the word conjures boys, kicking and scratching while being held down in padded rooms, the mire that means many people are more comfortable with words like “High-functioning” or “Aspergers” or “Mild”, or as one friend put it beautifully “Autism-lite” to describe verbal adults with medium to high IQs. However, it’s a mire that covers up the fact that “functioning” is a word with a lot of loaded agendas, that Aspergers is being phased out as a clinical term and that whatever this heterogeneous thing called autism is, is hard to describe.
(It’s a neurotype I’d say- that is, really not a thing in itself at all, just a description of a type of brain and way-of-being-in-the-world and processing it which may lead people to need help, in certain situations, to deal with a world which mostly isn’t designed for them. How much help, or when, is highly variable because a “spiky profile” of doing some stuff well in certain situations and not others is particularly characteristic of autism).
If I was autistic then I would have been wounded by the gig promoter who, after I’d talked about my diagnosis at her gig, messaged me to ask whether it was okay that that bloke sexually harassed her because he told her he was autistic so maybe he didn’t understand what he was doing. I might have said “Er, hello? Would it have been okay if I sexually harassed you?”. For the record, autism isn’t an excuse for being a knob. Any more than being a man is.
But talking of which, if I was autistic, people would say “But isn’t that just a man thing?”. No, no it isn’t. But as the intensive training in How Be A Girl propagated by schools and society, is more effective than the intensive How to Be A Man training, at causing people to fit in and be socially pliant, then I’d tend to stand out a bit less, as a woman.
If I was autistic I’d find noisy pubs hurt my head, sometimes cooked fish smells too fishy and eye contact can be distracting though I can do a passable enough amount of it that people barely notice nowadays.
I’d have found non-verbal language and tacit communication a complete mystery until much of it was put into words for me by; doing drama workshops, training to be a radio journalist, doing a person-centred counselling diploma, experiencing being a stand-up performer over fifteen years and talking to like-minded people interested in the anthropology of this strange species we call human. And I would thank heaven that for all the downsides of late-diagnosis, I hadn’t had the experience of being medicalised and pathologised and having my deficits talked about so much that I didn’t believe I could do the things I do.
I would feel responsible when parents talked about how much their children needed autistic role models, doing things in the world. Though I’d also feel like that girl in the class who everyone hated because other parents said “Why can’t you be more like them?” (I was never that girl).
I would feel responsible when I heard parents of autistic people say, as one did on my Facebook (I really should do less Facebook) that “due to the nature of their difficulties”, Aspergers people just can’t do community. That would surprise the performers doing the show “Stealth Aspies”, or the hundreds who go to the autistic-led conference “Autscape” or the many groups on Twitter and Facebook or the autistic-led support groups plugging the massive NHS gaps.
If I was autistic there would be no support available to me post-diagnosis whatsoever. None. Not even a badge, a welcome pack and a subscription to a Dr Who magazine. My GP would look a bit awkward and ask if I was getting “treatment” at the place where I was diagnosed. I would resist asking him if he’d found a cure for autism. My local autism centre would say they had support groups for families of autistic people, but not for actual autistic people at the moment and anyway, they weren’t sure about working with people who weren’t “known” to them. My husband would find it easier to access a support group for people married to autistics if he wanted to (he doesn’t) than I would to find one.
(If I was autistic my husband would say that the most important thing for him is that I’m just me- and that we’ve found a pretty good balance over our ten year marriage in matching both our “spiky profiles”).
If I was autistic, I would have rapidly cycled through shock, disbelief and worry at how my talk was going to go when I was scheduled to speak after a child psychiatrist who described autistic people as stuck at toddler stage, primarily egocentric and the possessors of brains which were quite possibly a “genetic mess”.
I’d have compared the situation to being like an ethnic minority comedian having to follow Bernard Manning doing a particularly racist set, which was why I wanted to write a note to the organiser in the middle saying “I’m going to BOMB”. Also “Aaargh”.
But, luckily, I’d have just spent three years of a PhD thinking very intensely (and DOING very intensely) about how stand-up comedy and poetry can bring audiences together, can confront stigma and prejudice without alienating the people who carry some of it, and turn being silenced and negated into joyful, laughing resistance.
Thank goodness for an audience who could help make that happen I’d think. Though professionally and personally being put in that situation, as a newly diagnosed adult is potentially damaging to a level that makes having to follow spotty teenage boys doing endless rape jokes at comedy clubs look like nothing.
It would be enough to make me continue to hesitate about coming “out” . To worry that it will distract from the other things I’m passionate about, like regional, class and gender-based inequalities, or that it will stop people asking me to do interesting things or stop them listening to me and make them put me in a pigeonhole. Not coming out, when an authority figure like that can say those things at a professional conference, will seem like sensible self-preservation- goodness knows that’s something you have to learn, growing up as an autistic woman and confronting the self-care, relationship-work, sorting out a household and career-stuff that tends to be harder and more baffling for us and statistically more often goes wrong.
If I was autistic
I’d worry about my identity and my “authenticity” and my “victimhood” being appropriated and commodified. By me, on days with an empty bank account, but mostly by any of the forces that have an interest in doing that, not always because they have bad intentions.
I would love irony and puns and saying two apparently contradictory things at once, even though there’s probably a leaflet somewhere saying I wouldn’t.
So I’d take refuge in the liminal, in the in-between, in the possible that is the space of so much art and culture and entertainment. And for now, I’d say: me- autistic?
Further Reading from Kate:
Steve Silberman- Neurotribes (Allen and Unwin)
James McGrath- Naming Adult Autism (Rowman and Littlefield)
Joanne Limburg- The Autistic Alice (Bloodaxe)
Laura James- Odd Girl Out (Bluebird)
Samantha Craft- Everyday Aspergers (Booklogix)
Katherine May-The Electricity of Every Living Thing (Trapeze)
Damian Milton -A Mismatch of Salience (Pavilion Publishing)