I was speaking with my bestie, their 3yo is pulling out of dance class because they are finding it hard (the 3yo not … you get it). It’s not having your parent there, as much as being told what to do by people you don’t know (inevitably in ways you struggle to understand). You see our protagonist is undoubtedly neurodivergent, and being neurodivergent is frequently tricky, because whilst you are growing up you are learning in mixed groups, with a curriculum delivered in a way to have the best results – or to achieve the best learning amongst the most students. When you have specific needs and make up 2% of the population, it’s on you to do the extra work When you succeed in creating an adaptation of a system, that creativity is not celebrated. Often that’s because the trainer does not understand that you needed it, or may look at it as procrastination. What is celebrated is the end result of your efforts, and in your case the effort was split between creating a new system you could work with, and finally the standard learning. When you realise that the standard measuring system doesn’t measure you you stop caring in the measuring. So being a neurodivergent kid is tricky. Tricky to the point of overwhelming; emotionally, intellectually and physically. Or at least that has been my experience.
To the first point I hated being without my parent. Usually my mum but back then my dad and I were close. It was bringing something/one you knew you could predict and was an an option if you needed to get you out of that situation. That sounds cold, I truly loved my parents regardless of the difficulties, and perhaps because of them. But in those early years until I was in my early 20sI found going it alone very hard. You learn little-by-little your own capabilities, but having that base of familiarity is exceptionally important as an autistic kid. I’d never complain, which was apparently a feature. I could get very quiet and focussed or very still. Inside I was vibrating at hyper-speed like the flash travelling through a wall. Some of my earliest memories are of negotiating my own executive dysfunction, making up rituals where “by the end of folding this leaf I would go and see if I could join in playing soccer”.
It’s especially hard in those early years when you are starting to encounter the neurotypical world. None of it make sense. I felt that I was in a daily escape room – having to navigate situations where at any time someone would change from happy to see me to outraged that I’d transgressed some rule. And it only became apparent that I’d transgressed a rule later on. Initially it seemed random, and the emotion and whatever I did was unrelated. I started learning about social rules from then on, and interpreting what people were saying into understanding what they wanted. Now 50 years on I’ve come a few laps in the understanding that often the response is random, and is a complex web of other peoples stuff that may intersect with what I am doing and what they are saying in small or large ways. But to a 3yo doing ballet that is way outside what you’ve signed up for.
So what is the way to teach neurodivergent kids dance? We’ve rallied and campaigned against Applied Behaviour Analysis, forcing the normalisation of children, and imposing a dog training reward model. We also know that “one size fits all” fit the majority not a minority. I’m certainly not an expert, but I do know people who are. It strikes me that I know internationally renowned leaders in dance and dance education, trained in neurodivergent accommodation and neurodivergent themselves. Seems like a good place to start.
(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; • increased mental distance from one’s job, or feelings of negativism or cynicism related to one’s job; and • reduced professional efficacy.”
WORLD HEALTH ORGANIZATION (MAY, 2019)
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:
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:
In the past I have been an irregular participant of running and hiking, but presently swimming is my go-to exercise. For me exercise is less about physical fitness and more for quietude; for self reflection and regaining control. When I’m swimming I can’t get overly ambitious. If I swim more vigorously I’ll start gasping for air and my performance drops as my anxiety rises. Swimming laps is both rhythmically monotonous and also holistically stimulating. For a neurodivergent brain such as mine that is a sweet combo. Being regular and repeated there is nothing to distract me. The only thing my brain can do is go along for the ride, which is a great meditation. We’ve covered our breathing Mental Health Monday.
So what’s with all the swimming? Well at the moment I’m recovering from burnout. A new job coupled with some personal troubles has led to overload on top of overload until I was scraping the bottom of the barrel. The first step is realising you have a problem. The next is dealing with it, and swimming has been one of the ways of combating the anxiety and depression that can come with burnout*.
So what is the broader word on exercise being good for mental health?
In addition to making me hungry, the Mayo Clinic[1] has some comprehensive advice about exercise balancing out depression and anxiety. I know that when I’m depressed, drumming up motivation for exercise can feel impossible. Joining a dance class with instructors shouting “Woo!” is not my thing. I learnt early in life that I’m not much of a “woo” person – even at my emotional peak. But exercise doesn’t mean olympic level training, or filming a TikTok of you over exerting in lycra. It can be as simple as walking. Research from Stanford found walking can increase your creative output by 60%[2].
Any physical activity can be beneficial, including gardening, washing your car, and the covid staple – walking around the block.
Doing 30 minutes or more of exercise a day for three to five days a week may significantly improve depression or anxiety symptoms. But smaller amounts of physical activity — as little as 10 to 15 minutes at a time — may make a difference[1]
Probably one of the most promising findings is that regular exercise of any intensity has a protective effect against future depression and is recommended to prevent recurrence of depression[3]. The Black Dog Institutes info sheet on Exercise & Depression has a lot more information[4].
For a lot of us putting our personal needs first is difficult. Advocating for others is a great way for me to trick myself into doing work for my own good. For example, finding time to swim everyday is hard. But when I saw the Laps for Life charity to raise money for youth mental health it was a great way to align a cause that I support with my own needs. So far this month I’ve swum over 10km in 12 days.
So in case you find yourself struggling, changing your scene with some light exercise might help you get back on track. As always though, reach out if you are doing it hard. A health professional like your local Dr is a good first port of call, as are friends, family and your support network.
Let me know what your experience is with exercise and mental wellness.
* never fear we are not going to gloss over the thorny topic of burnout, and the 41 flavours that it takes throughout the neuro-diversi-sphere. It is a solid topic that deserves its own conversation(s). Just preferably when I’ve had a bit of a repair.
[5] Schuch, F. B., Vancampfort, D., Richards, J., Rosenbaum, S., Ward, P. B., & Stubbs, B. (2016). Exercise as a treatment for depression: A meta-analysis adjusting for publication bias. Journal of Psychiatric Research, 77, 42–51. https://doi.org/10.1016/j.jpsychires.2016.02.023
The holidays are rough for a lot of us. A lot of expectations and traditions that are counterproductive in a neurodivergent context.
If I may, I think there are three things going on for me during holidays. Being transparent of these differences can be helpful in coming to a mutual understanding.
1) I understand the premise of reconnecting and bonding time and the rituals that feature in the neurotypical way of doing things. And whilst connecting is important to neurodivergent folk as well, without accommodation, it can cause the disconnection and friction instead. For example; planning a group outing without including the needs of the other ends up feeling … like you are not being included. Diversity is being invited to the party; inclusion is being asked to dance; (Belonging is having a place on the planning committee).
2) Forced interaction, without built-in recharge time, is damaging for us hugely. Often it leads to meltdowns, arguments and an erosion of trust. You wouldn’t continue to go on a kite flying activity if thunderstorms rolled in – so why would you insist on Disney World during the holidays season for autistic folks without sensory breaks built in. For friday night drinks in a noisy bar just because “that’s the way everyone else does it”?
3) Parallel play is intimate play. I’m understanding more and more that this is not only an autistic child development thing. Perhaps it’s due to heightened awareness of the other person and thanks for the deceased social load; perhaps it’s just that we don’t have to be made of social hierarchies and continual reinforcement; nevertheless doing things together but separate is legitimate.
Speaking of inclusion in holidays Ludmila Praslova PhD wrote a great piece on LinkedIn about sharing the holiday period inclusively. It’s a very broad in it’s thoughts of being inclusive, something I’m working on being in myself (you can read the full article here).
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.
So this is my last week at Sydney Dance Company and in rather than doing a big card and big gift we had individual cards and gave some money to a couple of animal sanctuaries that I really wanted to support.
The past 5+ years changed me immensly. When I started I definitely did not have qualifications of a unicorn. But the support from the incredible women who I’ve been lucky to call my bosses and mentors, and the unconditional love and support from my community at SDC and the #tessituranetwork has changed my life.
I will always be grateful for the opportunities to strive and push, grow and change. Opportunities to make small changes the in work life of colleagues with automations, or strategic inputs to the growth of the business be, it data driven decisions, silo removing technology, or EDI.
You learn a lot about your best self through goodbyes. Things that you overlook in your day to day struggles. I’m thankful for the inclusion and acceptance, never being patronised, compitence assumed. The lack of barrier between artists and admin at SDC proves that we are striving for the same goal
“We believe that dance changes you. To experience contemporary dance is to go on an inspiring and fulfilling journey. More than simply witnessing something beautiful or engaging with an art form, it is to be positively altered.”
Whether that’s through teaching dance to youth remotley during lockdown, choerographing exceptional works of beauty and relevance, or mentoring new DBAs that need support; we are working off the same playbook. To leave the world in a better place than when we found it.
Thank you for never treating me like I didn’t belong, thank you for giving me space to have a voice, thank you for allowing me to change and make change.
At the start of the year, like many folks, I’ve jumped back into getting the chaos of my job back into order with new planners and journals. Yes, again. However, this year I’ve stumbled across some great ones that I wanted to share.
The Hero’s Journal
A friend from my ASD&D (Autism Spectrum Dungeons and Dragons) group brought this up with me a while ago and I’ve since been enraptured by it. The Hero’s Journal is a daily planner, diary, … thing … that has developed a bit of traction across the neurodiversity community. It takes something that you want to achieve and presents it in a Magical Quest form to keep it interesting and fun. It’s not just whimsical, it presents pretty concrete psychological planning conceits in a (let’s face it) wonderfully nerdy way, giving your personal project the Joseph Campbell treatment. It comes in two versions, the Adventure style and a Magical Wizardry School style
The hardest thing was coming up with a project, and after wracking my brain (pardon the pun) I came up with my mental health. I’ve got so many things that I really want to do at any one time that coming up with a single project seemed small – that’s until I stepped back a bit. So much of what I’ve been trying to achieve (autistic advocacy, personal fitness, support groups, etc) fall completely under my constant struggle with my own mental health. It was a bit of a revelation that I could unify so much of what I want to get done day to day under that super objective.
It starts with mapping out what you want to achieve and getting you to define the stakes. The rest of the journal is a daily planner with 3 goals and a threat and ally list. At first I was a bit sceptical but recurring threats kept appearing during my early morning planning sessions which highlighted lurking concerns that I had in the back of my mind unacknowledged. The allies section was great. Full disclosure, I’m terrible at gratitude. Judge me all you like, I don’t understand the concept. But an ally list was great for me identifying people and processes that I had in my corner.
Dani Donovan (https://www.adhddd.com/) is a cartoonist who creates content explaining the struggles of ADHD. She is marvellous and funny and well worth following on Insta. HOWEVER her new project is the Anti-Planner.
How many of us have picked up a planner on the 1st January only to find that after a few entries it falls by the wayside? Well the Anit-Planner is the thing you do before you get to the Journal (in retrospect this should have been in the beginning of the post)
The by-line is “How to get sh*t done when you don’t feel like it”. It tackles project management, not through planning, but by dealing with the road bumps and potholes that derail us.
I’m beta testing the Overwhelmed section, which is one of the 5 categories of roadblocks. The others are Stuck, Unmotivated, Unorganised and Discouraged. Each of these areas have their own unique challenges and Dani has collected some incredible “mini-games” to clear that path to success. The first task in Overwhelmed is “How to half *** a project” designed to overcome perfectionism. There are 2 lists to fill out here, what is the meat of the project (aka the “must haves”) and what is the gravy (aka nice but are not necessary). Another task is this section is dealing with your dreaded Procrastination Hit List. Cartoon those tasks you keep putting off on the supplied Wanted Posters and send out a posse to bring ’em in!
There are silly things in there but all back with solid psychological theory. It’s an amazing way of getting Projects back on track when you “you know what you need to do, but struggle to get yourself to do it”
This blog post arrived from Hero’s Journal (the product of whom, I love) about distraction. It seemed to infer that distraction was the result of anxiety. It’s not that I’ve not heard that before (it’s quite a common trope in the “How to destress” pop-culture circle), but perhaps it struck me as odd here because the it was making distraction the subject rather than anxiety. The other reason it raised my attention’s right eyebrow was because I was talking (aka info-dumping) with a work pal this morning about the difference between working in the office and working at home.
Anxiety is not the primary reason for me to be distracted. IN FACT anxiety is a great driver of focus. In the office I tend to hyper-focus a lot because the excessive noise and human electricity-pollution creates such a atmosphere of stimulus stress that I usually have little choice but to burrow into work. Similarly task urgency makes me push into hyper-focus easily.
Additionally I’m more inclined to daydream when I’m in my home office working with much lower distractions and sensory pain.
Look, I’m no stranger to Yerkes-Dodson curve. I know that pressure leads to performance to a point. BUT I’m much more likely to hyper-focus with higher stress even when that stress is damaging.
It’s an ADHD thing (I’m pretty sure). I get distracted at low stress points and highly attentive at high stress points (until I meltdown). Heck, I went into business mode for a week when I arrived in Cairo the morning of Arab-spring when liaising with Australian and Canadian Governments (and the beautiful people of Egypt) saved our lives.
There’s also the judgment call on what we call performance. Free associating is great innovation work. It’s essential to me making innovative ground on projects.
So “No.” Destressing is not a solution to my distractedness. In many cases it’s the exact opposite.
On the other hand do check out the Hero’s Journal. I love mine and I’m using it to my personal mental health project. More on that soon
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.
“when people with very different experiences of the world interact with one another, they will struggle to empathise with each other.”
Damian E.M. Milton June 08 2012
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.
Heath Wilder 