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
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)
How to ADHD has really been on the money lately with incredible work tips that have really sung to me.
Taking on too much work.
Ah YES! Over committing is a huge challenge for my life for a number of reasons. Living a life in line with your values seemed a bit like the title of a pop psych book from the 90s (and personal baggage for another time). However stepping back for a minute and looking at what life values I need to prioritise was really great. Instead of fitting in one more request for other people, I really need to hit pause and take time out for myself, and the things on the top of my value list that I’m ignoring. Things like personal health and relationships.
One way that I’m looking at that at the moment is by monitoring my emotional health using the Daylio app. It also tracks potentially related stuff like healthy eating, exercise and personal timeouts. Because the best way to get an over committed data junkie to take time out is with the lure of more data.
The other thing is Trello. I talk about this a lot. I have a personal Kanban for projects that I need to achieve and hard and soft deadlines for that. For other work requests I’m building in two times a day of 30 minutes where I clear &/or prioritise those requests. Of course I can’t ignore everyone (as much as that sounds like heaven) but it does mean that I can block out times to focus and on what task knowing that the alerts will get dealt with in their own space.
Monotasking
That’s a great segue into the other great vlog – Monotasking. It’s a great reminder about the illusion that multitasking is somehow good. I’ve known for a long time that my brand autistic neurotype deals with interruptions by crashing my brains hard drive. It’s no secret that changing my focus requires a good 5-10 seconds to shelve what I was doing and making the turn. Even then it takes a bunch of effort to do. But split focus is also a pain for other neurotypes.
Monotasking is a great way to do lots well. Blocking out slabs of time to get things done. It’s also good to block in slabs of time to do social or answer people’s questions. It’s an idea I want to try out more and see how it goes.
Here are the two quick YouTube eps that I’m talking about. Love to hear the ways you are hacking your work for your brain.
It’s a lovely sunny winter weekend afternoon over here in Sydney lockdown. I’ve just made a batch of spinach and cheese arancini and am contemplating the medium future in the way that you do when you are observing time by the rate that a cat has to shift its position on the bed to remain sleeping in the sun.
TLCC2021 stirred up a few thoughts for me. One was inspired from the many incredible sessions that I went to from the Tessitura Enterprise team (whom I always imagine as being Starfleet Officers). I succumbed to their insistence that I finally read CRM at the Speed of Light, and not leave it as a shelved trophy for my Zoom background.
The other was this blog post on the ADHD tax, that I’d been thinking about for some time. If you are not familiar there has been a term floating around the online community about the concept of this tax, the cost to ADHDers for replacing things that have gotten lost, credit score hits from forgetting bills, late fees for things that have not been returned on time, impulse buys for things that we honestly don’t need, etc. It is one of those things that ADHDers will sigh and agree, and a recent Reddit post with almost 9000 upvotes and 700 replies underscores that sentiment.
Back to reading Paul Greenberg, I was at around chapter 2 on collaborating with customers when those two thoughts crashed together. At TLCC I was banging on about making equity for neurodivergent folks in the workplace. This is incredibly important for belonging and inclusion for our colleagues. It is a simple step to widen that thought process to our ND customers.
I’m going to quote Starfleet’s quote of Paul Greenberg definition of CRM
“CRM is a philosophy and a business strategy supported by a system and a technology designed to improve human interactions in a business environment”
Paul Greenberg, CRM Magazine, October 2003
It’s that final bit that really is the kicker for me. In CRM at the Speed of Light 4th ed Paul goes on to define Social CRM as
“Social CRM is a philosophy and a business strategy, supported by a technology platform, business rules, processes, and social characteristics, designed to engage the customer in a collaborative conversation in order to provide mutually beneficial value in a trusted and transparent business environment.“
Paul Greenberg, CRM at the Speed of Light
The collaborative conversation in a trusted and transparent environment is important because, as we continue to see, we need to walk the values we talk.
So here is my pitch. In the interest of a modern and inclusive CRM (business and customer) relationship, how are arts orgs helping our customers with the ADHD tax? How are we helping patrons remember shows with pre show emails? How are we giving our customers clear and actionable ways of exchanging without judgement? What are our rules with regards to a cooling off period on impulse buys? A friend’s (Martin Keen) recent forum post on adding an iCal element to booking confirmations was a great thinking point on inclusive design and being broad in our DEAI goals.
There are a number of business rules, processes and technologies that we can use to engage our customers in ways that make our relationship stronger. I’m excited to look at my own organisation’s accessibility from increasingly broad perspectives.
Another conference over. Sad but true. It was about 50 hours of video and face to face over the week. As with conferences it was hyper focus for the week followed by info digestion time. Well meaning folk talk about looking after yourself, only doing x hours, regular breaks etc. and a lot of that is right. I would sleep in 1-3 hour shifts but my waking focus was all on conference learning and sharing. I’ve tried other ways of being but it’s not healthy to be honest. A little thing that allistics don’t really understand is that it’s not the hours that cause stress but the human interaction and switching between tasks that really get us. Suffice to say that it was a great conference with a lot achieved.
As always I went to quite a few Customer Relationship Management lectures and picked up a great suite of recommends – some that I’ve been wanting to read for a long time like “Nudge” (Thaler and Sunstein), “Decisive” (Chip and Dan Heath), “CRM at the Speed of Light” (Paul Greenberg) … and the huge favourite “Thinking Fast and Slow” by Nobel prize-winner Daniel Kahneman.
So I started by post conference reading on Daniel Kahneman. This book has come up in many conversations and readings over the years and is built on 40 years of research. Systems processing in psychology breaks thinking into 2 processes
System 1 “is the brain’s fast, automatic, intuitive approach”. System 1 activity includes the innate mental activities that we are born with, such as a preparedness to perceive the world around us, recognise objects, orient attention, avoid losses – and fear spiders! Other mental activities become fast and automatic through prolonged practice.
Of course I’ve come across intuition and heuristics before. I was a psych major and spent untold hours as an acting student at university in Sandy Meisner “magic circles” acting impulsively. These things were either ideological (the former) or a bit of a pretence (the latter). I was always told that I was too ‘much in my head’ as an actor and not impulsive and ‘gut’ enough. I got better at faking it OR rehearsing so much at home that the thinking became unrecognisably fast, like remembering lines by reading them off the script in my mind. I’d argue that people were just ignorant of the calculations that they were doing in social situations and the amount of relationship math that was going on to interact with others were just the thing that they liked to call “intuition.”
Then I discovered I was autistic.
Well it was a long time coming to be honest. I was many times called autistic or aspie (amongst other things) when I was overloaded enough that the mask dropped. I rolled with it and tried harder. and harder. and … well it got to a point when I was working with others a lot more than usual in strategy and inter-team negotiation. And when my boundaries were crossed one to many times I did what comes naturally – I researched – and discovered my autistic self. Meeting more and more autists I realised that I was not just hard work, a broken person, or less – but a fully functioning autistic adult. That’s a conversation for another time.
Back to “Thinking Fast and Slow” by Daniel Kahneman I was reading about word association games and impulsive thinking and exactly how (neurotypicals) think about these things. Having thoughts that just into their mind when another is said as if by magic. You see this doesn’t happen for me. When word associating with my wife and she says yoghurt I think hard and come up with the yogurt that I just put into the fridge and make a conscious choice that I’d go with blue like the navy blue sticker that was on the carton. Or if she said smile I would conjure the list of emoticons and go to the next one in the list as a conscious choice. Impulsive thoughts to me are just cognition at speed.
I’ve posited this to my autistic psychologist friends and looking forward to what they have to say. From the recent feedback they seem to agree. We don’t do System 1 thinking. We don’t attribute malice to a big triangle that is following a smaller one (you neurotypicals are weird), we think about it and respond ‘appropriately’ (I realise this is laughingly subjective). It’s the same reason I believe that we autists have a large disregard for gender stereotypes with our high gender queer constituency and a high sense of justice in our shirking of nonsensical social convention. Of course I’m massively biased but I know that because I don’t do System 1 thinking. I think that we do an incredible processing job emulating heuristic thinking and doing so wonderfully well. But I’m sure that my thoughts on this will evolve when I talk to our incredible community further who will enlighten me more.
The below is a draft that I wrote in late Jan after a talk I gave. It was a bit raw to post then and I wanted some perspective before I did it. It was a panel discussion I really wanted to do but felt a substantial loss after doing it. I realise that that a lot of the issues were
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At the moment I’m bouncing back from a talk I gave yesterday. It’s hard to want to/be responsible for representing everyone at a non inclusive environment at a non inclusive time. The invisible labour is intense,additional managing to juggle so many things at once (just talking about the presentation not nearly including the life/work things happening at that precise moment), and tactically making one’s way through the conversation was additionally a burden. I’m not crashing but I’m steering my plane through shakey weather.
Structure So why was the presentation hard. Note that doing this is a CSI into what happened. Autistics (and indeed all ND folks) work differently than neurotypical folks. Personally it’s been a battle that I’ve had in every workplace that I’ve ever been in. Call a meeting with no agenda and talk about what you have on your plate. What I find in most meetings is that the person with the most status gets the voice. That wasn’t the case with this presentation but we did have very light structure. Walking in there (virtually) was fairly nightmarish. I was hoping that my passion and skills were getting me through the discussion, as I do with most departmental meetings in my life, feeling like a battle. But not knowing what was going to happen and not being able to rely on props/slides/what have you, was difficult.
Accessibility I found that the virtual conference was difficult. The dates were in US format and the times were locked to USA eastern standard time. I don’t know why. It surely didn’t need to be. And as a presenter I had no idea where my room was which added to a sensory burden that I didn’t need.
The platform itself was very bandwidth heavy and as a consequence I needed to log out and lower my screen resolution, change to windowed mode and hope for the best in order to participate. It was geared for business level connection but I was at home at 5am and using my home broadband and had to switch to using my phone wifi as a hotspot.
Maybe the most difficult was something that I thought was going to be a problem. The webcam and reliance on cues. I can usually get by on in person panel discussions by throwing back to a moderator or raising my hand. This was a completely different story. Being so locked into trying to assess nonverbal cues and extraneous information was exhausting and made it very difficult to do. In fact getting back into the lecture after rebooting my connection lead to the issue of alerting the moderator to my presence which is a social game that I don’t know how to play.
And the time. 5:30am. I’ve done a few podcasts and presentations over the past 2 years at these early hours – from midnight to 7am. I’m very eager to lend a hand and soldier on. One of the main reasons though for saying yes to these times, and to be honest saying yes to most things is alexithymia. The way I know how I’m feeling is by observing my own reactions. Most of the time I won’t know that I’m upset, tired or angry unless I analyse my behaviour. So I’m really good for getting up at 3am and doing a lecture – but it will have a negative impact on my executive functioning that will take additional resources to get through. I won’t feel grumpy, and I won’t notice my boundaries being crossed.
Summary
I realise that things have to change. The world won’t change and I can’t expect it to instinctively be inclusive as much as I’d like it to. So I need to get better at telegraphing my needs. That’s difficult when I’m working them out still, but in doing that there’s a better chance that the world (or the people in it) will remember the things for the next person.
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It’s been tricky this year. I realised how much I gained and lost. This is especially true of the autistic community. Of our little community. Pre and Post the mid year it went from strength to failure. I’m glad that I met so many people that validated my feelings by just existing and feeling so similar to my experience. The change from alienation to representation was like an incredible dream. The loss of people and a community was devastating. And returning to the neurotypical world (in the return to work) has been like smiling my way through loss. I need some time to process that change
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. 😊
I had four meetings today. The first was at 9am. I skipped gym to prepare. The last was at 3:30. I had to skip meeting 3 because it relocated and i wouldn’t have time to prep meeting 4 so I bowed out in favour of my team expert instead.
Meeting one. Canceled 15 minutes before due to being too busy. I missed gym.
Now gym for me is nothing athletic. I’m no fitness expert or body beautiful. 20 minutes of jogging in place is 100% for my mental health. Without it comes anxiety and a serious drop in performance.
So I’d prepped for a meeting that didn’t happen because of bad time management; and i was feeling crappy.
Meeting four. Cancelled 4 minutes after the meeting was due to start because they had booked back to back meetings that had run over. This time I’d prepped through lunch for the meeting.
I did an envelope calculation and 50% of meetings don’t happen because of double booking or overruns.
Now I’m not a fan of meetings at the best of times. They are frequently superfluous and full of the wrong people. And often when they are called they have no agenda and no takeaways and no goals. I do however prep for all meetings. If I’m there i mean to be there 100%.
That’s why I’m looking at transforming my local work structure. My goal is my own team is to set up a Agile/Scrum system to improve my so so project management skills and eliminate unnecessary meetings.
Well this is a little nerdy (non-surprise) but sometimes when delving into the dark recesses of your SQL database you come across some scary stuff. Places where the foreign keys are very foreign …
That being said I think that it’s always worth saying that, as influential as the work of H.P. Lovecraft is, his extreme xenophobia and racism needs to be acknowledged and criticized.
Heath Wilder 