This week I went to a wonderful accessible arts panel discussion on accessible tech in the arts. There are a lot of everyday uses of technology to use technology to increase the accessibility of arts and culture and our exceptional panel of Sophie Penkethman-Young (Australia Council), Marcus Wright (MCA), and Simon Buchanan (Sydney Opera House) unpacked a wide field of these. Technologies such as digital performance, alt t
ext and captioning, digitally delivered workshops, Virtual narrators, Augmented Reality deepened experiences, and AI created audio description … yes Artificial Intelligence made it’s face known.
Lately, in so much of the conversation, Chat GTP, and the AI successors, has dominated the subject of technology and art. Whether it’s artists having their work used as a platform for training AI without their consent, to using AI to develop writing art and critique of writing and art.
But it’s in the most banal ways that AI could be an accommodative tool for those of us with disability. We may argue the merits and value of a novel or poem written by AI. But what about AI writing your grant proposal. On that artists seem to agree. Maybe not the whole thing, but for those of us struggling regularly with executive functioning dilemmas. Contrary to the narrative of procrastination and avoidance that saviours like to peddle, or the adjectives that beaten down neurodivergents find the selves reciting, some executive functioning issues come from the difficulty in engaging with an unmotivated task or from a difficulty in cracking the introductory social format that is often where we find our lives. Having and AI write a rough and inaccurate opening that you could take on for a spring board into self expression is a wonderful idea.
There are many technologies that we use and will arise to help us meet the goals of an inclusive society. But they really need to start with the opening up of society to be more inclusive. Having no meeting agenda or notetaking could be taken away by speech to text capture or AI inferred agenda in retrospect. But the thing that will get us to a harmonious society is not technology filling the gaps – it for there to be no gaps from the designing of the way we want our future society developing.
This idea is going around all the socials again. All ND folk get the “ADHD/ASD/Dyslexia etc makes my special person super special” or more commonly “is great for business”. But the absolute refutation of neurodivergence being positive has crept back.
The former I have sympathy with, as much as if I had ever heard it from a neurodivergent pal. The world is constructed in such a way that we are set up to fail. If by chance something helps you get an edge in a particular situation and finally feel good about yourself then great. Celebrate the heck out of that superpower. There will be time enough that you will struggle with Lex Luthor and their kryptonite.
The later is where the Superpower slogan really comes from. Organisations, government departments and people out to celebrate the monetary value of neurodiversity. The fact that the majority of the programs are below standard pay level and are run by no ND folk without input into accommodations are a huge problem. Excellent ND lead orgs like Genius Within exist that are the exception but by and large the answer to ND folks low employment rate is met my “How can I profit from this”. Using Elon Musk, or some other (usually white, male, privileged) icon as an example of “success” is more of the problem and more with marketing the inequity.
What I do take exception to is punching down on anyone that has a moment of success and want to feel good about themselves wrt their neurotype. For the sake of everything that’s good, please knock it off. The fact is we have spikey profiles. We find some things easier and some things harder than the baseline. If you want to call the first bunch superpowers and the last kryptonite go for it. But the fact is, the things that neurotypicals are worse at than us, have been built into the rules or society to accommodate THEMSELVES for. Things like sitting still, social unstructured offices, working to a timetable rather than to interest … social structures that set us back. Every time we can’t equally compete in a world built for others or struggle due to difference socially, we are then called disordered and diseased.
Something I’m coming to rediscover is that projects not in conscious attention are still being worked on. My idea, and self experiment, is: if I start an idea with motivation, wire frame it out in my mind, then step away from it by dropping it out of conscious attention, when I pick it back up later I’ll have additional detail, and it’ll surface again when a new connection is made in parallel to the thing I’m doing in conscious work. This is really apparent when I’m getting across a whole business plan and linking detail to strategy. Procrastination and distraction don’t describe that process, and neither does multitasking. But it’s often used to describe what I’m doing.
To be honest I think there are a couple of things in the ND community that worry me. It’s hard not to fall in line with being told “it” – ie. our neurotype – is a disorder and a horrible problem, and by association so are we. I understand us thinking that, as it’s written in the descriptive title “disorder” given to us. It’s compounded by work practices and training that are designed for people unlike us. So we struggle to be something we’re not, using methods that hinder us, and can cause us pain. This leads to poor performance, and feedback that we don’t live up to our “potential”, further driving down our sense of self and acceptance of the deficit narrative.
But given space to thrive and practices that support us we can do exceptional things. But often these relaxation of the rules are a privilege afforded to the usual demographics, commonly white, male, financially secure, etc. I’d love to see that acceptance/practices/support extended to all demographics. So team meetings, but start with an agenda, have notes and end with action items (for executive functioning). Meeting spaces where distractions are minimised but doodling is OK (for stimming/fidgeting). Where text, voice and visuals are equally supported (for accessibility).
If neurodivergence is a disease, and treatment of it’s symptoms include, working with an ADHD coach to use motivation mapping to keep an interest in focus, or inventing BuJo to keep your life in a forward flow without (or even despite) executive function collapse, then by that logic every organisation psychologist should be called a medical specialist treating the disease of neurotypicality. I’m not saying it’s wrong, but I’d like some equality there. There are stacks of stuff in every Adam Grant book that don’t apply to me – but they are great skills and tips that I have to motivate and accommodate my NT colleagues.
None of the discarded crochet sets I did with my grandmother are about crochet; the squash racket in the back closet from my brief university days getting thrashed by my 70yo Professor, is about squash; the guitar that I spent 72hours learning Bohemian Rhapsody on when I found out that my dearest friend loved that song (on the eve of her birthday), was about guitar; the card game, since unplayed, that I played with my mum after her stoke, in her last days, was not about cards. They are about the attention and motivation and interest that was all consuming – in that relationship.
I get it. Sometimes I hate being different. I’m Autistic with my ADHD. I’m a reasonably good looking, intelligent and nice guy. Not being able to connect in a relationship till I was 27, losing jobs and burning out of university … that almost killed me. I’m a 28 year sober alcoholic. I blamed myself for being lazy and weird because everyone else seemed to say it first. What was odd though was that I also did exceptional things when everyone was in a crisis and saw the world in ways that were clear when others were baffled. Because of that I had friends when I was (ie: my “superpowers” were) exceptionally useful and no support when I needed it. That changed though. I’m making supports. I’m making support structures for others and fighting for inclusion. I’m old enough and accomplished enough (in the good times) that NTs have to put me in their hierarchy. So now I can make space and change and help others up. I’m strong enough now to meltdown and break in ways that we’d normally do in private and shame, but follow that up with education and transparency to try to get accommodation and acceptance for others. Some days I’m really kicking off the bottom and it’s a struggle to go on. I still hear the R word, and get questioned on my worth and ability.
But I show up every day.
So no. I will never subscribe to a disease model of ADHD (or Autism or dyslexia etc). I won’t talk about neurodivergence as a thing I can be separated from, like it’s a parasite hiding the real perfect me underneath. Because that’s not true and that helps nobody. What does help people, the neurominority, is lobbying and pushing for equitable rights. Equitable workplaces and social settings. Acceptance and awareness and appreciation.
Saturday 2nd April is World Autism Awareness Day (or what a lot of us autistic folk like to rebrand Autistic Appreciation Day). You’ve probably heard me talk a lot about what it’s like to be autistic and neurodivergent in the arts and culture space.
But it’s not time for me to talk. It’s time to clear a space for some black autistic voices. Autistic BIPOC folks in the neurodivergent community and media don’t get heard anywhere near enough. So here are some to get you started
So as I’m on holiday at the moment and powering through my holiday reading … and listening as I’ve taken to long walks accompanied by podcasts. I’d Just finished Sarah Kurchak’s hilarious memoir (I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder) that I’d been trying to finish all year. It was a book that I’ll read when I felt my sense of self starting to become insubstantial, like Marty McFly vanishing because his past was starting to become erased. Whenever I felt so apart from the world around me I’d read some of that book and know that I wasn’t the alone (and it was ok to laugh).
Since then I’ve been searching for my next literary adventure, which I found in …
Katherine May’s “Wintering Sessions” Podcast
So full disclosure – I love Katherine May’s stuff. She is an excellent writer that I discovered through her memoir “The Electricity of Every Living Thing.” In the book Katherine talks about the year that she took on the 630 km South West Coast Path walk to try and understand why her life seemed to be so overwhelming and isolating, with the realisation that she is autistic. As diverse as the spectrum is there are things that we almost all agree on, and her fitting together that puzzle of a lifetime of experiences during her years journey was something that very familiar.
Her second book is “Wintering.” Wintering (as a verb) is described as the power of rest and retreat in difficult times. It’s a very apt metaphor for pulling back and healing in response to those times when trauma comes into our life. But rather than a dormant time Katherine talks about how actively nurturing, necessary and powerful that time is. It isn’t a maudlin or depressing read at all. It’s a beautiful exploration of growth and opportunity.
And from that book she has curated an incredible series of discussions in podcast form that I urge anyone to listen to. In the Wintering Sessions Katherine interviews writers and artists who have weathered their own difficult times and have been transformed. The format is wonderfully personal and informal, making it very easy to connect to the people at the heart of their own story. I picked the podcast up in the Divergent Conversations Instagram series starting with her conversation with multiform artist Sonia Boué. The incredibly open and easy conversation between two neurodivergent artists was incredibly refreshing.
So that’s my reading list for this end of 2021; both healing and inclusive. If you need new podcast (or book) have a crack.
I’m interested in what you might be consuming during the holiday season.
The holidays can be rough for everyone. And for us Neuro Distinct folx it can be difficult to explain how differently tough they can be. Routine changes, flashing lights and loud music, social pressures, crowds and fine motor control puzzles can throw a spanner into your executive function machine, at the very least.
For me it is an exorbitantly overwhelming time that I struggle to keep just shy of whelmed. But however you want to celebrate – small, big, quiet or noisy – your way is valid.
That might mean:
Taking time out from a big social scene to lie on your bed with NC headphones on and recuperate (ie: get some spoons back)
Blocking out “Do Not Disturb” time to revise your plan for the next few days
Opening gifts the way you want to (for me it’s one piece of tape at a time)
Politely stating your boundaries
Getting a buddy to help you out when it gets too much (or too little)
I get the message. I don’t belong. I know that people would be upset to know that their words say that, but it’s there.
A work conversation recently to a group of colleagues was along the lines of, “it’s so much better for you to go into the office and have those organic conversations; to be able to catch someone in the corridor and get an answer to a question. We were all in yesterday and it was so easy and we got so much cleared.”
I know what they mean and I know that they mean well, but what they are actively telling me (and people like me) is that your authentic self is not welcome and your personal health is not important. ie: you don’t belong.
That’s a pretty strong statement for me to make. But it’s necessary because it’s in direct contravention of disability equity and inclusion goals. The act of having to prove fundamental truths about ones experience, and having to prove the barriers for disability is part of the problem. Milton’s double empathy problem1 states “when people with very different experiences of the world interact with one another, they will struggle to empathise with each other.” The issue is the lack of equality in the relationship creates a paradigm that, as the autistic experience is not able to be felt by others, it is frequently questioned, dismissed or disbelieved, despite evidence to the contrary.
Conversely we understand and accept the needs for a large portion of neurotypical & allistic society to need spontaneous interaction to function at their peak. If you need that to be at your best we support it (if it could not be at our expense that would be great too). Many of the needs of the widest part of the neurotypical (and frequently white, cis-male, heteronormative etc) community are baked into the work culture. But often that is at the expense of the minority.
Too many times in the past when I’ve come up against group pep talks (or group reprimand) I’ve approached the speaker to clarify what I’m doing wrong or explain the difficulty in doing what was asked. Every time I’ve been told “Oh I wasn’t talking to you”. What that DOES tell me is that I’m rarely, if ever, talked to. Like the opening speech. Hence my problem. What has been said in those moments are a general statement establishing general expectations, ie: the status quo. I exist outside of that ie: I am siloed.
So why is the office environment a problem?
Inherently it’s not, but a couple of issues are2:
Autistic folks keep a lot of information in conscious memory. On top of that we are asked to performatively mask in order to fit into the work culture taking up additional resources. Screening out background noise, smells and UV lighting takes even more resources. As a consequence there is not a lot of conscious processing left to focus on what we need to do. Therefore social interruptions and “can I just grab you a moment” can be crippling.
Masking leads to suicidality and burnout3. Reason being is that if you succeed then you have just proved that a persona is more valid than your authentic self. If you fail then you let slip your authentic self to your detriment. Additionally the effort to maintain that persona takes energy and focus that you need for your basic work and self.
Multiple conversations at the same time like in a lunch room, or corridor, require screening out of background noise and stimulus. That takes effort. That’s not even starting on eye contact and body language.
Not having time to prepare information for a conversation means that a lot of processing power will have to go into dragging that information into conscious memory, and shelving the task that you were on.
Often the spontaneous conversation will require an answer that hasn’t been scripted. Yet again this increases the amount of conscious thinking to
a) parse the information and formulate a response,
b) judge the position and personal status of the one you are talking to in case they need a specific tone or level of detail,
c) edit that response for generally socially acceptable norms,
d) keep looking for facial and/or body language cues from the person you are talking too. NB/ I have to do this in conscious memory.
We are expected to do all the above AND not rock the boat.
By existing outside of that I am excluded. So isn’t existing outside of the rules a positive accommodation? No. I’ll explain.
To fit into the work environment I’ll need to subject myself to exhaustion and pain OR not be in the room where decisions are being made. Not being in the place where the organic conversations were being had means being excluded from the decision making process (bad for me) and having ones knowledge, skill and experience removed from the decision (bad for the business).
Because I am rarely in the room when these decisions are being made I am frequently coming up against last minute deadlines. These scrambling for deadlines and approvals further impact mental health as well as business outcomes and can lead me to working 12+ hour days.
People don’t want to deal with disability and so they work around it and create a silo. This leads to more forceful insistence and begging, which in turn leads to more alienation.
So there’s got to be a solution right?
Sure, I’m not going to just complain and run (that’s no good for my own mental health at the very least). The solution is to be prepared. Set meetings with an agenda (or create them in the moment) and write stuff down. Designate someone to take minutes. Follow up and inform. Plan. Respect boundaries.
But there are other things as well. Celebrating team wins need to be done in a way that everyone can participate in. Staff x-mas parties are excluding, and if I attend I do so at my own health cost. Team building activities are the same.
So keep in mind that (despite what pop-organisational psychology might suggest) we are not all the same. You have a diversity of colleagues and reports. Treat them with equity (not just equality) and find the way to come together. They alternative is loss of talent and headaches – but also depression and burnout.
Your friendly neighbourhood autistic here. It’s autism awareness/acceptance/appreciation month so I thought I’d share a couple of great resources for helping yourself and other colleagues interface better, smoother happier, etc. It’s more specifically Autism Awareness Day on the 2nd April but I was busy with my ADHD taking me in many other directions so … here we are. And I’m going to just assume that you are aware and accepting of us so let’s move onto appreciation.
Of course it’s always good to start with “If you’ve met one person with autism, you’ve met one person with autism.” We’re all different and mileage may vary but these below are a good starting point.
Hunter Hansen is a great advocate for autistic professionals and he sounds like Owen Wilson so what’s not to like! All his content is great but especially relevant are the youtube vids
Ashlea McKay. Now I’m going to riff of the last Hunter video as a segway into Ashlea’s great advice. But first a bit about Ashlea. You’ve heard me mention her in a previous post about using a codeword (banana) to indicate informations processing time in a meeting. Well she regularly posts tips and thoughts about autism at work in her Quirk Monster Bites on LinkedIn. The one that jumps out at me everytime is about Open Plan offices. Yeah we all hate them. The ‘pop-in‘, the ‘have you got a second‘, the ‘I’ll just save you form overwork with my mew tiktok dance‘ – yeah it’s exhausting to us. You can read her take here
Dr Nancy Doyle is neurodivergent and her Genius Within (based in the UK) has a lot of great information about all neurodiversity and advocacy in the workplace. Her articles on Forbes and posts on social are also worth a read. Information neurodiversity is here
Neurodiversity Media by Rachel Worsley is the last trip on our tour and definitely not the least. There are an incredible number of free resources for autistic and ND workers and managers including case studies and advice. They also have Toolkits to help addressing issues and getting every one on the same equitable footing.
Thanks for reading my little autism appreciation and awareness post. Remember to read autistic/bipoc/trans/disabled voices and listen to what they have to say. Happy holiday if you are having one, and just general happiness even if you are not.
I work a lot I’m told. I’ve often been accused of having a Martyr Complex and frankly I’m a bit over it. This is something that a lot of neurodivergent and autistic folks I’ve talked to have experienced as well and I think I understand the reasons.
Hyperfocus and special interests are things things that are very central to the way neurodivergent people experience the world. Being focused on a single topic for a long period of time is very common to me. Hyperfocus is a state of being where I can keep attending to a single thing for hours and/or days on end. In the work environment it can mean working on a single problem for a week until I finish it.
Breaking out of that is aggravating to the point of painful. Having that done for me by people banging my desk or waving in front of my face for attention, is frankly aggressive and violent. Saying that “but they were only trying to be friendly” is no more a reasonable statement than it was in the 80s when it was used by grabassing men. It needs to stop. Ashlea McKay has been incredibly eloquent in here covering of that hereand here when she says “Good intentions do not negate not-so-good impacts. They didn’t mean any harm, but they caused harm and that harm has an impact.”
So let’s talk about the Martyr Complex.
I know my limits. I know how much I can take and when to back off, and I build those into what I can take. Most ND adults are the same. We’re good. Believe us. It’s part of negotiating our spoons budget. Hyperfocusing a task for me is a low cost way of working. I can do a lot of focused work and spend less energy. Let’s say it’s like getting on the freeway – I can zoom away without having to stop and start. But everytime someone interrupts to save me from working to hard I have to get off the freeway and stop – and it costs me more energy. And starting again to get back on the freeway is intense. What it effectively does is blow out our energy budget and can lead to burnout, frustration and meltdowns. All because someone wanted to save me from overwork with their funny tiktok dance.
I don’t work for the same reason as neurotypicals. I don’t do it to earn credit or as a badge of station (sorry Vu). I do it because it is a task that has to get done and it holds my interest. Of course I deserve acknowledgement and I deserve to be respected, but that has nothing to do with a Martyr Complex. Mainly because as an outsider to the social hierarchy there is nothing to gain there. The work gets done because the work needs to get done.
Burnout looks like Martyrdom. So ND folk tend to work different hours to NTs. We work when the flow demands it but hyperfocus doesn’t discriminate. When you are on you are ON. We don’t get halfway through a task and go off to work with the team and pick it up later. HOWEVER we also feel an incredible pressure to conform to what the status quo demands. This is called masking, and many an autistic has written articles about the dangers of masking. So you’ll often find us showing up 9-5 (or in my case 7:30-6 to avoid the public transport peak hour sensory overload) and then also working till midnight while I hyperfocus on a task. In fact working outside of the hours of NTs in open office environments is less energy due to the interruptions and sensory overload being absent. All this masking and extended hours lead to burnout.
Autistic superpowers. Ugh this is hard. The toxic positivity and the need for us to prove ourselves leads to overwork. There is a burden for us to appear infallible as a reaction to the tragedy narrative, and it’s a pressure that leads to overwork and burnout. Dr Nancy Doyle puts it better than I here.
Our Spikey Skill Profiles. A friend reminded me that we get resentment often (and sometimes irrelevant praise) for being great at stuff. Riffing off Nancy Doyle again “Whilst everyone has strengths and difficulties, for neurodiverse people the difference between them is significant.” Of course that depends on what you attribute to the normal that you are different from, what does occur is that we can really shine at some things. This is the superpowers at work. In this case though they can create a friction with colleagues when this is looked at as competition. Us being good at something, and sacrificing ourselves to be good at it, can leave them feeling inadequate. They don’t understand we’re not competing with them, we’re competing with ourselves.
Work social functions are a nightmare! I get panic attacks at staff BBQs and social functions. There are too many conversations to focus on, incredible amounts of sensory overload and social games that I’ll never be able to understand. The amount of focus that requires is incredible and I hate it. But not attending these functions can have serious implications on promotion and advancement, as has been documented by the feminist and BIPOC movements in detail. Also not attending tends to attract Martyr labels.
Personal time. What I do with it is my business. What neurodivergent people do with their time is their own business. If I have a special interest in (for example) organising mental health forums for in arts and culture and that gives me energy and satisfaction then that is great. I’ve been told that I’m hopeless and that I can’t help myself [being a work addict] because I follow my special interests rather than “go out with friends”. This is just gaslighting. One might not understand a person’s interests but there is no need to minimise them because one doesn’t get it.
So can we agree not to do this? Using the Martyr slur against neurodivergent and autistic folk is gaslighting. No one is wanting you to feel bad. By and large that wouldn’t even occur to us. The more you can help us shake off masking and stop gaslighting the easier it’ll be for us all.
Special thanks to Carrie Beesley and Mel Granchi for their input
I’m proudly autistic. I don’t feel any shame about it. I don’t believe in luck or blessing but those terms are also things I feel with respect to autism. “Lucky” and “blessing” are proud adjacent for me.
“Pride: feeling deep pleasure or satisfaction as a result of one’s own achievements, qualities, or possessions or those of someone with whom one is closely associated.”
I’m proud of my community; the struggles that they face daily and the achievements that they have made in a disabling environment; their self advocacy in the face of being spoken about and over by neurotypical professionals; their ability to create a community and community support through multiple forms of social isolation.
I’m proud of my own achievements despite adversity, victimisation and pressure to conform to a standard that I am not made for.
I’m proud to stand alongside other challenged minorities whether I am a part of them by constituency or as an ally. We are equal in our greatness and worth. We are powerful and strong in our mutual support and understanding.
We all stumble and make mistakes but we move forward. I’m proud of that.
Was having an insta-chat with a parent of an autistic child and special needs educator about learning how to modulate sensory sensitivities and thought I’d share with the group. It was good to have a positive conversation with parent of … There is an understandable rift between parents of autistic kids and autistic adults and there is a lot of reason for this. Hopefully we can bridge a gap though. We are really all fighting for the same equality and a less disabling world leads to whole and empowered autistic adults.
THEM: My question is this: if we don’t teach some desensitization so they can learn self-regulation techniques and maybe be able to tolerate things like stores and doctor’s offices, how do we prepare them to be functioning members of the community and be able to be as independent as they can be based on level of functioning of course? Not trying to offend anyone, especially the autistic community. Just a curious question.😊
ME: As a 49 yo autistic adult trying to hold down a join in an “open office” it’s never easier. I’ve never desensitised. But teaching your little marvel to be brave and strong might be better as its less dismissive. I can take the pain and disorientation but the gas lighting was the thing that made my life hard. Not believing in myself hurt my communication between me and NTs and crushed my spirit (ie depression) 🌻
THEM: That makes sense. My daughter suffers the “she doesn’t look autistic” syndrome and the “well, she can talk so why can’t she just behave” idiocy. There are some things she simply cannot tolerate even after trying and that’s just fine. I like to give her and my students a chance so I can truly see where they are at. This is a great response. Thank you so much for your honesty and kindness. 💜
ME: thank you for being such a wonderful parent and mentor. 😊