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).