O, she doth teach the torches to burn bright!
It seems she hangs upon the cheek of night
Like a rich jewel in an Ethiop’s ear;
Beauty too rich for use, for earth too dear!
So shows a snowy dove trooping with crows,
As yonder lady o’er her fellows shows.
The measure done, I’ll watch her place of stand,
And, touching hers, make blessed my rude hand.
Did my heart love till now? forswear it, sight!
For I ne’er saw true beauty till this night.WS, R&J
Category Archives: Uncategorized
Ocean wind
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Google drive just snuck this photo of mine past my feed. For an algorithm it’s darkly humorous, having recently lost a close friend. On the other side is the cold pacific ocean beating on these cyclopean blocks.
I used to come here a lot between the 90s and 2015. This picture however was one of the last and it feels a lot like that time;
wind harsh and sharp,
the colours unambiguous,
the sea more solid than cement;
so wild and solitary;
and so eternal,
in contrast with the rest of us.
On Rilke
_______
To someone that likes to pretend they know everything,
You have a remarkable ability
to prove I know nothing
_______
Mental Health Monday: Burnout through many lenses
(This piece of writing was created by my incredible friend Shelly and myself for our Neurodiversity and Wellness, Arts and Culture community that we chair)
You might hear the term “Burnout” talked about a lot and maybe you’ve felt that way yourself.
But what is burnout?
How does burnout differ between different communities?
And what can you do about it for your co-workers, friends and yourself?
Defining Burnout
The World Health Organisation (WHO) points out that whilst burn-out is included in the 11th Revision of the International Classification of Diseases (ICD-11) as an occupational phenomenon, it is not classified as a medical condition.[1]
Burn-out is defined in ICD-11 as:
“a syndrome conceptualised as resulting from chronic workplace stress that has not been successfully managed. It is characterised by three dimensions:
• feelings of energy depletion or exhaustion;
WORLD HEALTH ORGANIZATION (MAY, 2019)
• increased mental distance from one’s job, or feelings of negativism or cynicism related to one’s job; and
• reduced professional efficacy.”
However, as the boundaries between work and home have blurred throughout the covid years, the occupational distinction has also become less fitting. Evidence shows that burnout makes no distinction between paid or unpaid work and people undertaking unpaid home or care duties can also be impacted[2].
The Black Dog Institute and the UNSW School of Psychiatry[2a] have carried out studies into factors that commonly concur with burnout, including:
- Anxiety/stress
- Depression and low mood
- Irritability and anger
- Sleep disturbances
- Lack of motivation or passion
- Lack of concentration, memory loss or brain fog
- Withdrawal from others
- Physical symptoms such as aches, headaches, nausea and low libido
- Emotional fragility
It raises the chicken v egg question on whether these factors are a cause of or caused by burnout, or whether they are all a symptom of an underlying issue. The same researchers are also undertaking a followup study to further investigate the features of burnout and its relationship with depression.
Neurodivergent Burnout
In the neurodivergent communities, conversations about burnout are quite common. In fact many neurodivergent people come to uncover their uniqueness due to the burnout of trying to fly under the radar. The challenges of living and working in a society not designed for us can mean frequent overload that can push us into meltdown, shutdown, and burnout. Also life-changes can exacerbate challenges, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close[13]. Stigma can make prevention and recovery even harder.
So how does neurodivergent burnout differ from the WHO defined burnout?
A notable difference is in the causes of burnout [6]. Some of factors that lead to burnout for ND folk are:
- Repeated sensory overload
- Long term masking
- Having social/sensory needs minimised by others due to appearing “fine” (i.e. “successful” masking)
- Not having access to the appropriate level of supports & accommodations
- Difficult or unreachable expectations from family, school, work, or society
- Executive Functioning fatigue following a number of stressors or transitions
- When the overall load exceeds abilities + supports = burnout
But impacts of burnout can also present differently, including [7]:
- Loss of skills
- Loss of interest in dedicated interest areas
- Emotional regulation issues
- Added anxiety and depression
A study by Dr Dora Rainmaker at Portland State University[11], involved interviews with autistic adults. Whilst her studies have been in the autistic population, the sentiment aligns with other neurodivergent communities. Findings included:
“… struggling with independent living, loss of self-belief, and being frightened that the loss of skills from the autistic burnout might be permanent.”
Dr. Dora Rainmaker
The results also pointed to a “lack of empathy from neurotypical people, who had difficulty understanding or relating to the autistic person’s experiences.”
What can we do about it?
Policy
On a policy level, it may be good to know that groups such as the Black Dog Institute are campaigning for workplace reform through methods such as their White Paper[9]. Actions your organisation can take include:
- Evidence-based training for managers regarding the resources available and actions they can take to recognise and respond to mental health risk factors in the workplace.
- Building mentally healthy workplaces.
- Taking immediate action on bullying, sexual harassment and assault.
Self-care
The most important way to recover is prioritising self-care as a protective measure against burnout and other mental health issues. However self-care is often the first thing that gets sacrificed to work demands and stress.
So what is self care?
“Self-care refers to the activities and practices that we deliberately choose to engage in on a regular basis to maintain and enhance our health and wellbeing. Regular practices may include exercise, reading, meditation, disconnecting from technology, or talking with a friend or family member.”[10]
“When you take time for yourself to rest, reset, and rejuvenate you will actually have more energy to meet the demands of daily life as well as reduce or avoid the symptoms of mental ill-health.”
Dr Jan Orman
But what does Neurodivergent self-care look like?
For Neurodivergent folk there are a few ways to recover in addition (or instead of) neurotypical burnout recovery. In fact it’s worth noting that many neurotypical recovery techniques and interventions can be ineffective or even more overwhelming. Social support can add to overload, and even mindfulness may need a special touch as described by Sue Hutton[14].
Neurodivergent affirming recovery methods can include [8, 11, 12]:
- Deliberate reining back of tasks and responsibilities
- Prioritising rest, recognising the necessity of healing, and equitable productivity
- Careful unmasking where appropriate
- Slow refocus on areas of interest and energy giving environments like nature
- Outsource executive functioning tasks
- Attending to sensory needs
Self-care Strategy
Prevention of burnout comes with increased awareness of needs and accommodation for those by workplaces, family and community. Clear boundaries and formal supports are also key to keeping the overload at bay.
The Black Dog institute has a comprehensive self care template designed so that you can craft a personal self-care strategy that works for you. It will guide you through the 4 steps of self-care planning:
Step 1 | Evaluate your coping skills
Step 2 | Identify your daily self-care needs
Step 3 | Reflect. Examine. Replace.
Step 4 | Create your self-care plan
You can download a copy HERE [10]
Follow up
If you are feeling burnout, run down or depression it’s worth talking to a mental health professional starting with your doctor. But if you are feeling that that’s a big first step try reaching out to the people around you and in your communities. Talking can help and it can make that journey more manageable by taking it one step at a time.
Go well!
PS– what to learn more? Check out this upcoming workshop on Autistic Burnout:
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Resources
- Burn-out an “occupational phenomenon”: International Classification of Diseases World Health Organization (May, 2019)
- Experiencing burnout? Here’s what to do about it BlackDog Institute (Feb, 2023)
- Burnout diagnosis one step closer with new clinical checklist and predictor of which personalities are most at risk BlackDog Institute (Jul, 2021)
- The Cost of Workplace Stress in Australia Medibank (Aug, 2008)
- Importance of self-care planning | Black Dog Institute
- Autistic burnout, explained https://doi.org/10.53053/BPZP2355 Spectrum News (Mar, 2020)
- Autism and ADHD Burnout Recovery — Insights of a Neurodivergent Clinician Dr Neff, Neurodivergent insights (Jun, 2022)
- “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood (Raymaker et al., 2021)
- Navigating Autistic Burnout: Self-care strategies to recover and recalibrate – Reframing Autism Justine Field, Reframing Autism (Jan, 2023)
- Modern work: how changes to the way we work are impacting Australians’ mental health Black Dog Institute
- Importance of self-care planning Black Dog Institute
- CharWrites info graphics on Burnout recovery Char (Mar, 2023)
- Neurodivergent Dawn on ND Burnout and Recovery Neurodivergent Dawn (Jun, 2022)
- Understanding autistic burnout Dora Raymaker, National Autistic Society (Mar, 2022)
- Learning to Celebrate Neurodiversity in Mindfulness Sue Hutton (Oct, 2020)
Sat 2nd April is Autistic Appreciation Day: Highlighting Black Autistic Voices
Hi folks,
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
https://neuroclastic.com/category/culture-identity/people-of-color/black-autistic-lives-matter/
Read some, share some, learn some.
The Festive Season and Neurodiversity
Hey lovely people,
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)
Here are some more exceptional tips for both neuro distinct folk and allies from the peeps at Exceptional Individuals to make the festive cheer more cheerful for all. I’d would love to hear your thoughts and tips on making it through the holidays https://exceptionalindividuals.com/about-us/blog/neurodiversity-and-the-holiday-season/
And just so you know…
You are enough. You are appreciated.
Happy holidays all,
Heath
Combating Overcommitment & Monotasking: Good tips on hacking my job
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.
The ADHD Tax
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.
Post conference book club
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.
System 2 is “the mind’s slower, analytical mode, where reason dominates” . Usually, system 2 activity is activated when we do something that does not come naturally and requires some sort of conscious mental exertion.
https://www.marketingsociety.com/think-piece/system-1-and-system-2-thinking
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.
Literally food for thought.
Stay safe
Neurodiversity and communications
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
_____________________
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.
_____________________
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
Heath Wilder 