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.

Autistic at a Wedding, the Doctors and a Gig

Autism is Not a Thing

I realise not everyone knows that autism isn’t a thing. So I’ll just reiterate that. You can’t isolate it under a microscope and go “Aha! There’s some autism!”. It’s a way of being in the world and processing the world, which is why most autistic adults polled (by the National Autistic Society) prefer to say they’re an autistic person, rather than a person with autism. It’s part of our very identity.

Autism Influences What You Pay Attention To

Here’s an analogy for autism which is sometimes not just an analogy. Most people, if confronted with a line-up featuring an avocado, a trombone, a bicycle, a snowdrop, a person and a game of Battleships, would be inexorably drawn towards noticing and interacting with the person first. Bits of their brain would be pinging “Person, person, person”. Autistic people don’t have such a strong automatic brain-ping just because it’s a person.

In addition, other bits of their brain and body may be registering strong signals which average people would filter. Maybe things like “Ooh, it’s hot in here…my wrist feels funny….what are those shapes in the light…my retina is fuzzy” which further dampens down the “It’s a person, take special notice!” signal. It doesn’t even necessarily mean they prefer, say, snowdrops, to people. It’s partly that people move around, make noise, change, shift and can be over-stimulating and confusing. If your brain filters less stuff, then you’re not necessarily going to seek out things which would overwhelm it (although you might do, as a sort of “high”).

As an example; I tend to notice dogs more quickly than babies, partly because I feel more comfortable with dogs and know how to read them. If both a baby and a dog are coming towards me at the same time, then I’ll “see” the dog first because it lights my brain up more, as well as being less scary. I am aware nowadays that this is technically a social faux pas, and most people, especially women because of the social conventions that require women to be more nurturing, would notice the baby first. Then make baby noises and want to hold it. I expect however, if the apocalypse had finally happened, then I might notice the baby first because I’d be thinking “Phew, a baby, we may be able to continue the human race” (as I am quite invested in humanity really, despite our flaws).

If You’re Less Able to Pay Attention to People, It Takes Longer to Learn How to Communicate With (or Like) Them

To cut a lot of long stories short, the lack of an automatic “Person Brain Ping” tends to mean that instead of easily, unconsciously embedding loads of learning about social relationships and how to express them (including emotional displays) from a young age, autistic people learn about lots of other stuff too. Surely an evolutionary advantage to have some people keeping their eye on other balls- but it does mean that in a world which increasingly requires people to display an unassisted, socially orientated sort of “normal”, then autistic people can be at a disadvantage.

The consequent relative difficulty identifying, describing and feeling emotions is known as alexithymia. Now, technically, everybody is born alexithymic. Babies don’t emerge going “I’m actually feeling rather low as it goes, with a temporary slight element of euphoria now you’ve given me that milk”. They learn emotions in conjunction with others, who might reflect their own bodily sensations back to them. They also learn the ways to display emotions which are “appropriate” to the time and contexts they find themselves in. (Which are ever-changing. Think of the “stiff upper lip” that Second World War pilots were supposed to display, whilst it was de rigeur for Gulf War Pilots to express anxiety and fear in news interviews; if they didn’t people would have judged them as emotionally dysfunctional as beliefs about emotions had changed so much, even in fifty years).

Many autistic people have some degree of alexithymia. Not displaying emotions can often be taken as not having any. In my experience, and that of many others, it can be that there is a degree of “cut-off” from one’s own feelings and sensations, but this is quite likely to be due to experiencing yourself and the world as a sort of roiling mass of confusing sensations, affects and perceptions which don’t bear easy relation to words (or to the gestures and expressions that other people use to display them). I’m wanting to keep these blogs medium-length, so I’m now just going to sketch a few contexts in which I’ve moved from pretty alexithymic, to reasonably emotionally expressive over the years. I’m not saying that this move is necessarily always a good thing either, but it has embedded me more in the social world. It also means I’m very alert to people expressing emotions in a way that feels “true”, versus ways that feel “false” and thus confusing.

1. Weddings

So, weddings did not used to be occasions of high feeling for me. There was often nice food but awkward conversations and music that was too loud. The rote performance of things people seemed to do just for the sake of tradition, like photograph set ups that took ages or wedding vows that were the same as everyone else’s or particular (usually uncomfortable) dress codes didn’t make sense to me. I think this was a mixture of the very conventional weddings I went to in my twenties, and the fact I wasn’t as connected with my own feelings. In my early thirties I went to the homemade, intimate pub wedding of a poet friend and enjoyed that more but remember asking another poet friend, in quite a Mr Spock-like way “Why are people crying?”. He said it was because they were happy. I just didn’t get it.

Then, at my own wedding, which I’d unknowingly arranged to be as autism-friendly as possible, with an afternoon-tea theme, poems, fifty guests and a nice, quiet lighthouse setting, I felt a thing which I called “The magic cloud of love”. It seemed to be something that the goodwill of the guests (who, under what seemed quite sensible criteria were all people that we liked) transmitted to me. It didn’t come just from me, or my husband, it was shared. I expect things were going on with similar heart rates, neurotransmitters like oxytocin and May sunshine. Anyway, once sensitised to it, I’ve been able to feel it at other weddings. In fact, when asked to read a poem at a friends’ wedding more recently, I felt the communal magic cloud of love and my own happiness for the couple so strongly, I choked up at a couple of points in the poem.

Part of the reason I’m now able to feel it is because I’ve named it, I think. Autistic people can struggle with proprioception (feeling where your body is in space, balance, touch etc) and interoception (being able to identify the sensations inside your body). Because I now know what the internal feelings for “There’s a magic cloud of love going on in the vicinity” are, I can fully experience it.

2. At the Doctors

So, talking of interoception. Doctors expect you to be able to name what’s going on inside you. They also expect that if you are in pain, then you’ll show them it on your face and in your gestures. You might have a special “pain” voice. I didn’t really know this until very recently.

Autism aside, I grew up in a place and time where you were expected to get on with things without making a fuss. I recently read a memoir about a Lancashire farming family who “never spoke” and I thought, compared to our family they were positively garrulous. I sort of took it for granted that people didn’t necessarily express negative feelings. I remember making a work call the day after my Mum died, and having to mention it to explain why I couldn’t be somewhere. The woman on the other end of the phone said ”But you sound so well and cheerful!”. I thought to myself that it would have taken more effort to work out how to do “The voice you’re supposed to have when your mother’s just died” than “Normal voice I’d have on a work call”.

I genuinely imagined that Doctors mainly took account of the symptoms you told them about, and any tests they did on you, not how distressed you seemed. But, post-diagnosis, having read other autistic people on the subject, I know that doctors do take account of that other stuff. Studies show they also consistently underestimate womens’ pain, so there’s a double whammy there. Anyway, I now wonder if that’s why whenever I mentioned past eating disorder problems, I’d made it sound more like a bit of a bother, than a major trouble, so my bulimia was never treated or attended to (It may also be that things have moved on considerably in the past twenty years).

Last year I had an allergic reaction to anti-fog goggle mist and my eyes kept swelling up, made worse by drops that pharmacists prescribed. I was thoroughly fed up after a couple of weeks of this, and worried that I’d have to do another gig with red eyes. The doctor didn’t seem to see it as very urgent, but then, remembering that expressing some actual feelings might be useful, I purposely told him how worried I was about the gig and even cried a bit. They weren’t fake tears in any way, but they were tears I would usually have held in (or maybe, not bothered to let out?). It seemed to have a miraculous effect anyway, because he immediately rang the dermatologist and I got me an appointment for the next day.

3. On Stage

And finally, talking of gigs, I have probably learned most about how non autistic people need to have me express emotions in my work as a professional poet and comedian on stage- but at the same time, it’s also a context in which being fairly alexithymic has significant consequences (positive and negative). I do however get constant feedback about what works and doesn’t work (sometimes instant feedback- in the form of laughter, or feedback afterwards when audiences come up and talk about their reactions to particular material or poems). I’ve learned that if I allow myself to connect to the feelings in my poems, without becoming overwhelmed by them they’re more likely to “transmit” themselves to members of the audience. It’s a form of the emotional self-regulation that usually happens when a primary carer contains and reflects back a baby’s expressions and emotions to it.

Sometimes however, I forget that words can conjure up emotions a lot more quickly for many people than they can for me. A few months ago I did a small, intimate performance in a village hall. After a poem about being connected to your ancestors down your maternal line, which I know people can find emotional, I then moved on to one of my funniest poems about two women swimming breaststroke in the pool while talking and obstructing everybody else. One young woman had had to go out at the end of the ancestors poem because she was crying so much, and I said to her later, when she bought a book, that I’d planned my set so that people would immediately have something to laugh at after the emotional poem, so I wished she’d stayed for the funny poem (!).

I can also be out of step with people as a gig attendee. At a poetry festival not long ago, I went to a one-person show that had a lot of emotional content. Possibly because I was thinking about my own stuff and in very analytical mode, it didn’t impact on my emotions at all. But when we came out, I was sat at a table of people I didn’t know well and started analysing it a bit, and realised we were at complete odds. They were sort of shell shocked, and wanting to stay in the emotions they’d just experienced, to the point that I felt like cheery old me was being utterly insensitive to where they were. (Though at the same time I had a really strong urge to talk to someone who wasn’t in the middle of feeling lots of feelings so we could just have a good old chat about it).

Conversely, the following day I was so tuned in to the emotions of the poets I was seeing, I kept streaming with actual tears in sets that other people didn’t seem to find as emotional at all (particularly, I noticed, when it was poems about people holding their feelings back). I couldn’t really work out why one day I’d had no emotions, and then next day loads and did wonder if it could be because the previous day I was very tired, whereas the next day I’d slept much better.

Emotions continue to be a mystery, often an inconvenience and something that can both divide us from, and connect us to other people. I realised I haven’t covered anxiety or anger at all. Perhaps that’s for another blog in the week I have impulsively committed myself to…

The Undiagnosed Autistic People

I’m giving myself permission to blog about autism every day this week. There is SO much I could say and usually I don’t say it. There are other “messages” I’m supposed to transmit like- “Come see my show about Northern women” or “I’m really normal for a poet, honest” or “Do book me for that workshop, I’m great at running them”. Anyway, this week I’m jamming my own signals. Starting by writing about the many undiagnosed autistic people I meet.

It’s a bit taboo to diagnose people without being a psychologist or knowing someone’s full developmental history. But myself and many autistic people can’t help it. We notice, even if we don’t say. We have autism-dar (like Gaydar). Sometimes it’s so obvious to me it’s distracting. I can see someone’s brain and a body working and processing the world in a particular way. I want to say “Hello! We share a neurotype, but you possibly think autism is only Rainman or The A Word or Curious Incident of the Dog in the Night Time” or children locked up in padded rooms”.

It’s more obvious since I’ve got to know more autistic people and begun to recognise and accept my own traits more after my diagnosis eighteen months ago. I’m sure I have blind spots. And because of my life as a poet and performer who lives in a Northern town and travels all over for gigs, there are certain types of undiagnosed person I come into contact with way more regularly. The categories I’m about to list are coloured by a very “Me” lens and my own prejudices and biases. However, in that respect they’re much like the categories uncovered by psychologists and other medics everyday…

1. Autistic Creatives

The arts can be a great environment for autistic people. Quirks and different ways of seeing the world are positively welcomed, there is less pressure to conform or fit into one particular working environment.

Autistic creatives are perhaps particularly less likely to be diagnosed because of the common misinterpretation of “lack of imagination” in the diagnostic criteria- which as Dr Lorna Wing, who came up with the concept of the autistic spectrum once told me- actually means a lack of SOCIAL imagination (and ALL the diagnostic traits will usually become less obvious as people mature and learn).

This is perhaps even more acute for creative men, who actually fit the “female” profile of autism more closely and thus will have their traits dismissed. The undiagnosed autistic creative person is often able to focus with brilliant precision on their craft- be it music, writing, visual arts or performing. Their enthusiasms and passions spark and arc and can be a way to communicate and share with others. They can be open, exploratory, warm and charismatic – all further confounding stereotypes about autism, making them less likely to be diagnosed by themselves or others.

The art that an autistic creative makes or facilitates can resonate universally, but also function as another sort of autism-dar. I’ve spoken to several fellow autistic women writers for example, who recognise Virginia Woolf as thinking, processing the world, writing and being in a way that fits our neurotype.

The fact that I’m an autistic creative myself and see so many others thriving in similar lines of work contributes to me sometimes feeling I’m “making a fuss” by having a diagnosis. They’re proof positive that fulfilled lives without labels are perfectly possible- though I do sometimes think they might be a lot kinder to themselves in the context of a neoliberal capitalist system which can chew up and spit out flexible creatives if they knew more about the ways they experience the world differently.

2. Maverick Women

I love to meet a maverick woman and recognise her as a fellow traveller in the autistic mode of being-in-the-world.

She’s usually deeply honest and critical of the world around her, often in the interests of fighting causes for others. Learning hard lessons about what women are “supposed” to be and do and say and look like, she might ignore them entirely, conform to some degree whilst maintaining her independence, or cast them aside with relief at a certain point. She might be a loud maverick, whose voice carries above others or a quiet maverick who subtly, stubbornly goes her own way, often to the bewilderment and (possibly) eventual admiration of her peers.

She’s less likely to be diagnosed because there is still a lack of recognition in the diagnostic criteria that autism is just as common in women as in men, and a lack of understanding about how the different ways women are socialised can mean their traits are “masked”. She’s expected to do emotional labour so often learns how to do so, and gets on and does it.

3. Nerdy Men

This is in deep contrast to the nerdy man, who is most likely to be picked out as “Weird”, “Probably Aspergers”, though cruelly often not actually diagnosed due to being from the wrong generation or read as just a quiet introvert.

They’re the Dad or the husband who is much castigated for having no clue about social or relationship rules, because people are less likely to take the time to explain them to men than to the women they’re trying to get to do their emotional labour.

Psychologically open nerdy men are great, psychologically closed ones, I find a challenge. Happy to be sat next to them on a bus if we happen to share a special interest, otherwise I’m sorry to leave them to their perpetual bewilderment at how the world and people work. It’s interesting when this category of undiagnosed person turns up as a doctor or a psychologist…

Finally (Is this all sounding a bit horoscopey?) we have the category of:

4. People Diagnosed with Something Else

As people less likely to absorb gender schemas, there is a high correlation between being trans and autistic. But, due to the huge challenges in recognition for trans people, it may often be difficult to recognise or seek the possibility of an autism diagnosis too.
Ditto a strong correlation between anorexia and autism in young women- to the point that there are calls for anorexic women to be automatically screened for autism. (But we really are still in the early days of recognising this). Hence also why many autistic women are misdiagnosed with depression, anxiety or particularly Borderline Personality Disorder. That’s apart from the fact that these things (and associated trauma) can commonly be co-morbid with autism.

I haven’t been diagnosed with anything else personally, though did occasionally try to interest doctors in me having an eating disorder in my twenties (bulimia) without much success. I suspect my inability to adequately “perform distress” or articulate symptoms clearly wouldn’t have helped.

Anyway, this is in no way a definitive list or attempt to describe the complexities of autistic being. It’s some observations of the categories of people I meet who are likely to be unrecognised as autistic. It can be hard work pretending not to see them.

I recently did some work in a school where there were a lot of autistic students. They told me gleefully that they’d diagnosed one of their teachers. My autism-dar had pinged too. She fell into the “Maverick woman” category and it was clear that she was a skilled and inspiring teacher, and a great fit for her students who saw her as a role model. What a pity that ignorance and stigma deprives so many others of those role models…