At the start of this year I read “Anthropologist on Mars.” As a neuroscientist/science communicator, I’m almost ashamed to say it was the first Oliver Sacks book I ever read.
This is not about that book.
But I do think it’s interesting how the title of this book seems to refer back to that. I finished reading “A Field Guide to Earthlings” (AFGE) by Star Ford (published as Ian Ford; more writing at website: www.ianology.wordpress.com) and I was blown away by it.
AFGE introduces a few concepts of the relationships between language and culture, and how each shapes the other. Then, we dive right into an analysis of the 62 (SIXTY-TWO!) patterns of perception, belief, learning, communication, feelings, emotional displays, relationships and power typical of…well…Neurotypical social communication.
And that’s why it’s an interesting reference back to Sacks – because it re-centres the autistic perspective as the anthropologist. And yes, I was a little disappointed in “Anthropologist on Mars.” But this is not about that book.
Like many such books, “AFGE” offers advice from autie to autie about concepts like loneliness and authenticity (two big struggles for us, regardless of our individual differences).
This fabulous, and sometimes tongue-in-cheek look at NT social communication gave me the chance to say I was mind-boggled, and for that reason has contributed a huge amount of joy to my year. Some examples of mind-boggling…
“Hold up! Small talk has a PURPOSE?” (Since confirmed by my boss)
“Even POTENTIALLY hurt feelings are a social faux pas?” (Since confirmed by a social situation, and explains a lot of things for me)
And, my favourite…
“That’s what ‘weak central coherence’ is? Funny how culture currently is advocating for better psychological well-being by letting go of a need for certainty. In that case, I should probably be proud of my ‘weak central coherence.'”
Another example of the joy contribution of AFGE were some key lessons right from the introduction. Starting with the definition that culture extends from language, and those who share a symbolic/associative language web share the same culture, we immediately reach the most important sentence of the book.
“NT perception is restricted by their use of language and cultural symbols”
This is closely followed by one of the most excellent definitions of autism I’ve ever come across.
“Unfiltered perception leading to high sensitivity, low acculturation [low assimilation and conformity] and cognitive independence”
It brought me great joy to have an autistic person talking about authenticity.
Authentic is not easy when you’re on the spectrum. It’s not easy when you’re one of our neurodivergent cousins either. And now, AFGE gives you a resource you can point to. Specifically, you can point to it on those days someone says that your behaviour is challenging, or difficult. “You think MY behaviour’s difficult? Have you seen these 62 patterns I’m expected to understand?”
An excellent read for anyone autistic, neurodivergent, with communication disabilities/differences or who wants to understand interpersonal communication better.
Science, curiosity, and a good story all start with “why?”
So WHY have I been gone from you, dear internet and internet whānau?
The simple answer is Just Life Stuff (see previous post).
The complex answer needs a bit more explanation.
While, yes, I’ve been very busy moving house, hustling to make ends meet and trying to find permanent/ongoing work, it also turned out to be a wonderful thing to step away (be pulled away) from the internet screaming factory for a time. Being online (especially on social media) doesn’t bring out the best in anyone.
Regardless of what most of us do or don’t do on the internet, I think a big chunk of our behaviour online is not always our responsibility.
Why would I think that?
BECAUSE MY WORKPLACE IS FULL OF NAZIS. Seven bajillion exclamation points and screaming implied.
White supremacists, extremists, whatever we call it. You know what I’m talking about. Toxic hatred.
And workplace? Yeah: workplace.
Don’t get me wrong, the social aspects of the internet have their benefits. As an autistic person, this tool has allowed me the chance for people to get to know the authentic me before the in-person me. (No, they’re not 100% the same; No, this wasn’t by choice; Yes, this is a survival mechanism).
But also, I have to have (or there is an expectation I will have) all these platforms for work…
Facebook – Group project messaging; Preferred method of contact for multiple colleagues
Twitter – Science and science communication communities networking; current events; Doing Science communication (or whatever I’m doing – that’s the best label I’ve got)
Instagram and YouTube – Same as Twitter. ALL THE INFORMATION AND TALKS AND FREE EDUCATION OH MY (#AutisticJoy)
So then, I come to engage with these parts of the internet FOR WORK and they seem to support and promote white supremacy. It’s all a bit much in my workplace.
On top of that, when I come to work online to do science communication as an autistic person there’s two bonus extremisms. I mean, let’s not fool ourselves, they have the same ideological foundations or roots, but they have specific targets of their hatred.
Bonus extremism 1: Anti-vaccination proponents.
Bonus extremism 2: Autistic people who are of the opinion that “not professionally diagnosed” is equivalent to “not a proper autistic.”
Imagine if this were a physical office I had to come to?
Then imagine all the emotional labour were my reponsibility to block, ignore or try to educate people why their extreme ideal is 1) Unfounded and 2) Harming me and others like me.
Oh wait. That second part isn’t imagine. And I haven’t just put up with this in online workplaces.
So I’m coming back to work. Mainly because I love it. In four months away from the internet, I feel creative again. My ideas cup runneth over and it’s time to start sharing some of them. It’s what I want to spend my time doing.
Next, because as I mentioned, a toxic workplace is nothing NEW. I’ve done this before (every. workplace. ever.). You set reasonable boundaries and don’t expect anything better.
And third, because I have a tiny sliver of hope.
Facebook, broadly accepted as THE WORST of social media, committed to wiping out white supremacist hatred on their platform. Sorry, not sorry, Facebook – everyone hated you already. But kudos for this commitment. Now, if you could stop funnelling funds to eugenicists that would be superb also.
Because Facebook owns Instagram, I predict a resurgence there.
Will Twitter follow suit? Would twitter please join us on the right side of history in saying “White supremacy is bad?” I want to go back to the heady days of glorious astrophysics images from Hubble, discussing really weird things that happen in science and regular political problems like what the best thing to throw at a politician is: Dildo (NZ) vs. Egg (Australia).
And if you think the Nazis and toxic hatred are something regular, to be accepted and tolerated like any other viewpoint, well…I can only suggest you reflect on that opinion.
Where have I been you ask? The short answer is hectically busy. Here is a longer (exciting!) update on what’s going on via bullet points…
When last we “spoke” I had just been to a conference then had a busy week visiting family. In the middle of that, job and professional development programme applications
One week at my home base (another job application) then GRADUATION! Hooray, I’m officially a Doctor now! Still not a medical doctor, do not take medical advice from me. I haven’t done much in the way of pictures on this blog, but here is me in bonnet and gown.
Straight after that was family staying at mine over the holiday season. Cue touristy things, much driving around, and some much needed time with my partner. We’ve been living mostly separately since November so this was super important. (Oh, did I mention that all of this has been while living alone?)
New year, fresh start! Travelling on weekends while family was visiting and having them stay here with me. Also cue house hunting and moving pressure. The commuting couple thing is not going well and our lease is coming to an end. In order to shift as little stuff as possible, I KonMari’ed the house. Yes, I got drawn into it. Yes, I have thoughts. Coming soon.
Hooray! I got accepted to the leadership development programme! Ohmigosh, I feel so lucky to have been selected and to get this opportunity. It’s a program designed specifically for people with access needs run through Be. Accessible. Check them out at this link: http://www.beaccessible.org.nz/ . More coming soon related to this too. I’ve been busy doing prep work for the first session – leaving tomorrow!
EVEN MORE job applications! And a cool science communication application (not accepted, but for the best). And some summer school tutoring, which was intense because it was all in about 3 weeks.
A 4 day trip because one of my beautiful friends took me to a concert. Pop bands of the ’90s. We relived some high school “glory” and saw beautiful sea creatures at the aquarium.
At this point, I was so worn out that I fell ill and have basically been in survival mode for two weeks. Oh, and yet another job application. And starting to pack because I move in two weeks. And house viewings where random strangers come to look through where you live.
If you skipped the bullet points, hello again! Where does all this hectically busy leave me? Feeling like the red queen mostly – running as fast as I can to stay in one place.
All this running (some of which is still to come) takes me through until the end of March. But hey – that gives all of us in this little corner of the internet something to look forward to. I’ve also been making plans for possibly doing this (here, that you are reading) permanently. I’ve got ideas for autism acceptance month (otherwise known as April).
Whether that permanent idea happens, we’ll wait and see. There’s still a couple of job applications in the works. However, so far those many applications you see above have resulted in nothing. And not even being told no (except in one case). Just that “good old” feeling of being treated with silence.
So, if you’ve been led here by my CV – hello! please don’t be rude. If you’re not going to hire me, at least send me an e-mail to say so. But also, please consider hiring me because I’m a great person for the jobs (as outlined in my cover letters and CV).
If you’re in this corner of the internet from other directions – also hello! We’ll be back in April.
[CN: This post makes mention of irresponsible drug use and microaggressions autistic people experience]
4:15 pm. November 30 2018. I’m having a meltdown.
I’m not precisely sure why. It’s just getting to a point of general “Everything is overwhelming.”
Semi-foetal position, I’ve run from proceedings to huddle myself upstairs away from prying eyes. The strangest thing about this meltdown is: I was having a great time! Apparently just too much of a good thing.
How did I get here? In the crash-brace position, hands linked behind my neck with head between knees, sobbing and moaning. Could this have been avoided?
The beauty of this particular story is that this was actually a success in avoiding too much of this. Let’s go back to the beginning.
I’ve been a member of the Science Communicators Association of New Zealand for three years. If you’re keeping track of my timeline in any way, that pre-dates finding out I’m autistic. This year, opportunities (and affordability of the conference because of the wonderful efforts of organisers) aligned and I was able to attend. I’m passionate about this area. I’m actively seeking work in it, doing it and growing my knowledge about it on my own time. This was a perfect conflagration of possibilities.
A lot of effort went into pre-planning attendance. Forethought and research about what it was I might need to ask for in terms of accommodations, what sort of things I would need to be responsible for myself, and what trade-offs I would make in order to find a balance between “reasonable” and impinging on others preferences and desires.
Here was the toolkit…
1) Communication badges (a modified “traffic light” of those used at other autistic conferences, outlined in Jim Sinclair’s “Being autistic together” – link available here on the resource page)
2) Introvert space (intended to be a quiet space to go should I need to disappear)
3) Headphones, white noise app, my usual stim aids, a book, my AAC (augementative and alternative communication) phone app
4) The decision to be unapologetically and unashamedly autistic within what I decided was a safe community for me to do so
Armed with the toolkit, I showed up on day one. A workshop about engaging visual presentations. This was interesting, enjoyable, I learned a lot and even managed to slip some considerations about accommodations for disabilities into the conversation. I got to reconnect with some wonderful colleagues. By the end of the hour and a half session, I had the AAC out. Speaking was not coming. Red Badge – stop: I’m not able to communicate easily.
I had some time to recover, refuel (coffee and kai/food), and “just be” with two extremely understanding colleagues (now named conference aunties). Then on to the meet and greet mixer.
A subtle addition to the toolkit here, and one I’m not proud of – red wine. I don’t drink often, and generally at all anymore. But in a space where it’s acceptable, and even expected, alcohol is most definitely supportive in allowing “Me” to come out from behind the mask.
And here too, I had valuable conversation. I met some of my colleagues and friends from twitter that I’ve never met in 3D space. I was able to leave the incredibly loud main room and join friendly colleagues in the quieter outdoor bar.
But here also, I was reminded that I’m the outsider. There will always be the people who speak around me instead of to me. I will never understand the nuances of small talk, or conversation with people I’ve only met for the first time. I will miss connections with people I would love to speak in 3D space with, by virtue of my poor facial recognition and approach anxiety.
Then again, this reminded me to let twitter people know at the start of day two that I might not recognise their faces. And blessings upon those people who took this in stride and made sure to introduce themselves even if we have “known” each other online for a long time.
Day two began with Keynotes and panel. I learned a new idiom/phrase: “Are we just rearranging the deck chairs?” I couldn’t figure out the meaning from context. I missed most of this part of the panel because of confusion. By the time I asked my neighbour to clarify, I had no idea what was going on. I took a break to regroup before social/morning tea time.
Then I was asked to briefly explain the badge system to all. Which I did. Off the cuff. And my deep thanks to the colleague who I missed the chance to speak with individually, sitting in the front row whose kindness, empathy and appreciation were apparent. This kept me grounded until I could head outside and kick out all the jitters. Literally. I stood outside kicking my legs around. What a sight some people must have thought I was!
And I kept it up for the rest of the day. I did whatever I could think I needed to do to be in the situation, opinions about what I was doing be damned! I could feel a meltdown coming on just before lunch. Although I didn’t think I was hungry, I was apparently hungry. And this meltdown was avoided by eating.
But it can only be put off for so long. I was desperate to sit through the panel on “Diversity in Media” because – oh! The panel members were spectacular and this held deep interest. But by now, attention was slipping from me. I was in and out, and only managed to stay for the end of this session by assuming the “Happy Baby pose” down the back of the room.
Final session of the day – an unconference style hour and a half. Sessions are proposed by attendees and people move where they like. I managed half of an initial session, before I started spiralling.
Coffee will help? Ugh, I’m getting a bit “extra” I should probably go and just run around the block or something. Try and sit in on session two? No, can’t concentrate. OK. Go out. Red badge. White noise and book. Ground and focus. Time check – 30 minutes until my proposed session. Should I go and sit with someone? Let’s try. No good. Listening to people speak is setting my teeth on edge. Oh no, it’s coming – escape time.
Which brings us to the 4:15 meltdown. Ever had a meltdown with a time limit? It’s quite refreshing to say to oneself “OK, let it all out, then get on with things.”
So out it came. And then at the start of my session, I was honest. I explained a meltdown and sensory overwhelm to my colleagues. I was exhausted. Many of them decided to join me in sitting on the floor. With the support of another colleague and friend who also has a communication disability, we had a wonderful session on “accommodating communication disabilities as communicators.”
Could my meltdown have been avoided? Absolutely. Had I asked for the additional accommodation of no one wearing perfume, this would have given me a few extra sensory spoons. I’m not sure that a full conference in one-and-a-half days is the best format for me personally (and perhaps others). Maybe more of the open forum style, with sessions across two days, allowing for more “time out” would benefit others as well as me?
But, like I said at the start, this was a success. Success is not always perfect. I was able to attend, and able to attend as myself. I was able to spread an idea that the autistic community has generated, and people loved it! Not only in our Aotearoa sphere, but other attendees spread it through their networks too. In part, this success was because of the work I did in organising some accommodations. But it also came from the openness and acceptance of these accommodations by the community I was a part of that day.
This is the first time I felt like I’d been met half-way. It wasn’t without it’s teething problems, but tino pai tō mahi SCANZ (great work!). I’m grateful for the experience.
This is part 2 in a series of increasingly numerous ideas about managing executive function. I’m really vibing on this as someone who has executive function difficulties to manage and is a neuropsychology nerd. If you have problems, theories, thoughts or queries – leave me a comment or tweet me? Executive function is fickle when you’re autistic, so I think all sharing how we support ourselves is important.
Here is how I plan and organise my time so I can get stuff done when I’m able to. Some aspects are from other organisation systems and modified in some instances so they work better for my autistic brain. As always, YMMV.
Here we go…
Step 1: Make a list
This is also known as a “brain dump” and is essentially what it says on the box. You sit, with your brain, and you dump it all out. Everything you can think of that you have to do, want to do, appointments, expectations of your time – ALL THE THINGS. However you like to pour stuff out, just pour it out.
This list will not be perfect. You might not remember all the things. That’s OK. When you do remember a thing? Add it to the list. Something new comes up? Add it to the list.
The brain dump is going to go through some more processing to become organised “To-Do Lists.” But, if nothing else, just try the list. It seems to be a sufficient help on its own.
Why? It clears up mental space so you don’t have to remember all those things you just poured out – the list does that for you.
If you carry out a bit more processing, the list will become even more helpful
Step 2: Organise the list 2A: Anything that is something you do every day or very regularly, keep separate (here’s a link to part 1 covering my “Every day” wall list). 2B: Once the every day things are out of the list, some kind of calendar is going to be useful. Anything that has a due date, deadline or set time requirements should be put on the calendar. 2C: Following these two steps, things should now be gaining some structure and sorting themselves into “NOW” and “LATER.”
This is great. By this point, we’ve cleared up mental space and given focus to what we need to do soon, and what we can put off for a bit.
Here’s where we get to the big chunky part, and it’s something that doesn’t come easily, or naturally to us autistic folk.
Step 3: Prioritising and breaking down larger tasks
Seriously – this is the hardest part. Sometimes it’s even hard to do with seemingly small tasks: Stop, think, what do I do first? It’s also super important for things like work, school assignments etc. There are methods, but they’re not explicitly taught because it’s assumed people can do these things, or will pick up on them. Let’s get explicit…
3A: Prioritising – The Eisenhower matrix
At this point, I’m going to give you a link (click here) to a video from Jessica at How To ADHD, who is far more entertaining than me and has already explained this matrix.
Essentially, all tasks can be sorted into four categories
1 – Urgent and Important (do these now, today)
2 – Urgent but not Important (but this is a little bit unclear if you’re autistic. More specifically, it’s not important that you do them or if they’re delayed a bit. Think things like household chores)
3 – Important but not Urgent (those long term goals and large tasks)
4 – Not Important and not Urgent. Most people seem to recommend doing away with these. I find my special interest things (outside of those that are “work”) fall into this category based on a non-autistic priority matrix. I keep a list of these elsewhere and allow myself time for them.
Take your To-Do list from above and figure out where each task fits. Now, you can start working through in order (1’s first, then 2’s and 3’s, then 4’s).
3B: Breaking down larger tasks
If you’re on top of your Urgent tasks and working on something Important But Not Urgent (#IBNU) – FANTASTIC.
If you’re like me, it’s probably a large task that is actually several smaller ones (e.g: Write Essay, due in 4 weeks).
Also, if you’re a bit like me, you won’t quite know what the first step is and that “Write Essay” is going to end up happening in the final two days in hyperfocus and leave you exhausted.
To break it down, I start imagining the steps backwards from the end. So…
Submit my completed essay
Make sure every requirement has been met (titles, cover pages, correct font)
Proof read my essay
Cross-check all references are included
Wait a minute! WHAT REFERENCES?
Generally, within a few steps of imagining the end point of a larger project, I can find a place to begin. So, the first task for “Write Essay” becomes “Start researching my essay” (to find those references you need). From there, smaller tasks from the beginning to end start to become apparent.
So at this point we’ve got a list, organised into an order we need to do it, with big tasks broken down into smaller chunks.
Step 4: Time Tracking and Colour Coding
This step might not be necessary. I like it and find it useful because I’m managing life with four disabilities where one of those disabilities makes it difficult to do so. This step requires a daily organiser where you can keep track of how you spend your time. I colour code four categories – Personal/Self-Care; Things I need to do for my household; Work/professional stuff; Side project
By tracking when I’m working through certain things, it’s given me data. I LOVE DATA. It’s told me when I have either psychological or physical energy for different types of tasks, allowing me to set up a routine. It keeps me on top of self care and helps me recognise things that might trigger shutdowns (in particular) so I can choose the best time to do those things within my routine.
It helps give me flexibility for days where I JUST CAN’T. Example – Number one intention for the day not going to happen because I’m inert on the couch? That’s OK. Can I shower? Can I eat something? Can I do the things that are urgent today? That’s fine.
Like I said at the start, executive function is fickle when you’re autistic. For all these steps in my overall time management system that help to keep me organised and progressing on things I want to do, they don’t change the fact that self-care tasks of daily living are also a huge success.
So I’ll leave you with the final “Step.” It’s not actually a step, so much as the most important rule.
Step 5: YOU (yes, you) are ALWAYS number ONE on your TO DO LIST.
Not in the sense that a mathematician might say this. That a number is meaningful and designates somethingness. Thereness. Amount. Magnitude.
Oh yes, of course there’s that.
But MEANINGFUL. Big Block Letters. An emotional thing. Attachment and that sensation of something bigger. That sort of meaningful.
My earliest memory (aside from being about first meeting my sister, which is in itself VERY IMPORTANT) starts with numbers.
I have learned to count. Only as high as TEN. I know there must be bigger numbers to count to because there are more steps than that. But TEN is where we have gotten to for now.
My visual memory is very poor, but this one I can see.
Climbing the stairs to see my Mum in the hospital. We’ve done it so many times the same way. Ritualistically. I watch my feet as I step very precisely on each stair. A maroon linoleum strip runs up the centre, held in place by a gold-ish edging, the wooden sides of the stairs surrounding it all. Sneakers. White and red with velcro straps. I like them because I can put them on and take them off myself. Velcro has a satisfying ‘rip’ and ‘push.’
This memory, one of the few image-memories I have “comes online” when I reach TEN.
I don’t think I should start over because next is not ONE again, but I don’t know the word for it. But that doesn’t matter right now because counting the stairs today is special. I am two and last night I got a sister. Breakfast this morning is with the nurses and they give me vegemite on toast and a strawberry milkshake. It’s a very special day.
As I write this, it’s another special day. It’s the first anniversary of my realisation and understanding that I am, in fact, autistic. [read my discovery story at this link]
51 weeks since the psychologist I was seeing agreed with me (which was coincidentally, 8 years to the day since I got my cat).
50 weeks since the psychiatrist spent 30 minutes asking me only about sexual relationships, but didn’t “see” autism. A severely uncomfortable 30 minutes. But it’s OK that those are the only questions he wanted to ask because he’s a doctor and doing his job, right? Right?
Numbers are meaningful.
26. 10. 2017.
26 is 2 x 13. Thirteen is my lucky number (social conventions and superstitions be damned). And it’s right that it should be 2’s. 2’s that double and fold in half so easily to nice even numbers.
10 is good too. Round, both literally and figuratively. Ten’s go all the way up (100, 1000, 10 000) and all the way down (0.1, 0.01, 0.001) so nicely. Tidy. A completion.
2017 is rough. It’s messy. It’s really not the best. It doesn’t seem to divide nicely into anything. I think it’s a prime.
Multiplying it out leaves you with a great big zero. Zero is fine and lovely and round, but it’s nothingness.
Addition gives you ten. Ah, there we are – completion, satisfaction. Then you have to finish adding. One. The individual. The start.
Subtraction in the same fashion gives you 4 (THE RULES say you must take the smaller numbers away from the larger. You can’t have negative sixes of anything except for argument’s sake). Four is a fine number too – it’s two of two. Or, it’s 1 and 3. It’s the final number from 13. It’s lucky as well.
This day one year ago was lucky. It was a completion of a quest and answers to questions. It was difficult and messy in some ways. I was exactly zero different to the day before, but it was an all encompassing non-difference. It was the start of something, which has been so far good and bad (that’s how life is). It was everything before, folding in to one point in time in a sensible even fashion, and folding out away from it again, just so.
It was serendipity and things happen for reasons. But of course, we make our own serendipity and reasons in reverse.
From that day, I’ve spent the past year living my life in reverse. Not of my own volition necessarily. Your brain just starts going through everything and re-analysing and understanding your past and present better.
Without too much concerted effort, the brain’s marvelous ability to do this has allowed for much psychological healing. A deeper understanding of what I need to feel my best, and what behaviours I should address and act on. I’ve gained a better ability to recognise when I am in error, or when it is others who have erred. I’ve accepted a lot, done some healing, and made amends where I needed to. Or at least tried. There’s still a long way to go.
Actual effort has gone towards identifying my internalised ableism and snuffing it out. It’s slow and hard and lots of research and observation and listening and learning from others. I’ve learned about boundaries and assertiveness. Again, there’s still a long way to go. Achievement Unlocked: only two meltdowns in the past year over a desire to be “normal.” A vast improvement over regular occurrences in the past where the same was motivated by “What did I do wrong? What’s wrong with me?”
The answer to that? Nothing.
There’s the zero. Or at minimum, a reduction to two.
My self-diagnosis, discovery, recognition, identification (whatever you want to call it) as autistic one year ago was meaningful. To me at least. We each craft our own meaning.
Finally understanding myself. Who I am. Why that essential “Me” mismatched with the perceptions and feedback about “Me” from 98% of the people I encountered. A whole, and a completion. Finally feeling like I could belong to something, just as I am.
Carl Sagan started the refrain that we are made of star stuff. But when you’re autistic, the most common thing you seem to be told is that something is wrong with you.
It’s a lie.
We are many things. We are stars. We are weird, but kind. We have flaws, like everyone. Because of how we are treated by a majority, many of us have deep compassion and understanding for what it’s like to be rejected, the outsider, misunderstood. We express it differently to the expectation. Most of us seem to be trying to be the best version of ourselves we can be. None of this is inherently “WRONG.”
What all of us are, is 2% of humanity. A relatively small percentage of a species of individuals whose individual existence is an infinitesimally small likelihood. Precious. Dust and elements from the heart of stars exploded and conglomerated over aeons to end up here as biological matter. Biological matter that required generations upon generations upon evolutions of life that survived to the stage of reproduction to end up as you. Bigger and bigger numbers reducing to smaller and smaller.
The theme of my past year has been acceptance and kindness. Every individual, wonderful, unlikely person is 1 in billions upon billions. Those small things – acceptance and kindness – are huge, and sometimes the most difficult act.
The thing to remember for year one is that you are incredible. Just as you are.
It’s ironic that I’m writing this on a day when my Executive Function (EF) has packed up and left me. Handily, that highlights two points I want to make as I share the systems I’ve picked up, modified, or possibly created over the years which help me manage daily attention, short-term memory, judgement and decision making, and the break down of long term goals and tasks.
Point the first: One common characteristic of being autistic is a need for sameness, routine, and a strong desire to know what to expect. We don’t cope with changes (especially sudden ones) well. However, one of the things about life as a human is that things change constantly. Managing my executive function fulfills my need for routine, and knowing what to expect, while also improving how I cope with changes to schedules or to my own functioning ability on a day-to-day basis.
Example – today. I made the decision on Sunday that I would work on PhD changes today. Last night, I was lying awake for a long time, didn’t wake up as usual, didn’t have lunch until almost 4 pm, and therefore ran out of time today to do what I planned. This violates the expectation. BUT! Because of my personal management, I have other options. Shift things around a bit, and voila! I can do something that takes a little less attention, and still get through what I want to get through this week. This also led to about 2000% less negative self-talk regarding getting my PhD changes finished.
Point the second: These are the things that work for me. Your mileage may vary. Heck, MY mileage varies. Just because I have a personal system, doesn’t mean it always works.
Until 10 months ago, everyone significant in my life was travelling along with the assumption I was typical (broadly speaking). Therefore, typical things were EXPECTED of me. I had to figure out ways to manage mainstream school, university, living independently, having a job, then balancing part-time work with grad school. Very often, it hasn’t worked out well. Burn out, general life collapse, and a lot of VERY BAD DECISIONS which could have been avoided. All through that, it was my little systems that kept me going.
So maybe they will help someone else. That is the spirit that this series will be done in. Knowing that our (autistic) mileage, and specific needs vary, take from my systems what you will. Adjust as you see fit.
Final caveat: I’m a little bit constantly “on the go.” When I get up in the morning, I like to be “doing.” I frequently have more ideas than I know what to do with, and cannot pursue at least half of them. If your life runs at a different pace than mine, that’s also cool. I say this because this is not about comparison, OK? OK.
My Five Part System for managing Executive Function.
One: Every Day Reminders
I started keeping a reminder list on my wall for daily tasks when I was a teenager.
This is a combination of things that I am either trying to make into a set routine (so that I no longer need a reminder) and things that happen infrequently enough that I need a regular reminder. This could broadly be defined as “self-care requirements and responsibilities” if you, dear reader, want a general framework for your own. The list reads…
AM bullet list: Feed cat; Make coffee and breakfast; Shower; Get Dressed. Question: Is there laundry to do (in big letters).
I have crossed out Radio On because starting the day with the radio was not working for me.
Currently, my AM list is what I am trying to make an automatic routine. I never drink water. I know this is not healthy, and it’s caused me problems in the past. I just don’t ever remember to drink water, and I don’t notice I’m thirsty until I’m DESPERATELY thirsty. Starting the day with this reminder means I’m drinking more of it consistently. This section is close to being automatic now, and I will then work on making the Evening and PM reminders routine. I’ll have to keep the laundry reminder. It’s working (I’m on top of the laundry!) but if I remove it, that will go out the window. Weekly and Saturday are household chores I’m responsible for. My personal preference is to chunk them in one session.
Two: Weekly food plan and grocery list
The major purpose of having this is it takes away some decision making from my days. I make all the decisions in one go, and figure out what I need to buy at the grocery store for the week. If I don’t do this, I have been known to either not feed myself or live on cheese/eggs on toast or buy takeaways. I’m too poor and too coeliac for takeaways, and cheese on toast is awesome, but not a sustainable diet for general health. I also put food related reminders – example “soak beans” the night before I need them. If something we use regularly runs out, I write it down straight away in the “next week” column, so it gets transferred to the shopping list.
I am pretty lucky that my mum taught me to cook from a young age and my partner is a chef. I have a handful of recipes that I can make relatively easily. I still find cooking to be difficult some days, especially if my EF is poor. This list doesn’t help with that aspect, but how we eat does. We often eat the same thing for several nights – it’s cheaper, and I can cook once then mostly reheat for the week. There’s always a couple of options over the week so that I can be a little flexible if time or personal desire/EF capability requires something different for dinner.
Three: The Go Bag
Contents of the Go Bag: Wallet/Cellphone holder. A notebook which I call “The brain dump.” Headphones and a phone charger cable. Loyalty cards. A compact mirror. Lip balm. A pen and pencil.
This is everything I want to have with me if I’m leaving the house for a significant amount of time (i.e. a work day). Missing from it currently are keys (because I don’t have my own set at the moment) my coffee cup (it’s just been washed) and sunglasses (I’m working from home, so The Go Bag is low use currently). I can take subsets of these requirements if I don’t need everything, but they all stay together in one place so I don’t have to find anything individually. I have a separate laptop bag if I need to take my computer.
Other things that get put in here are my water bottle, food (if I’ll be out over a meal time) and…
Four: The Day/Month/Year planner
This is where I “function” most of the time. I’ve mentioned my obsession with the passion planner before (Link to Supports and Appreciation (Autism Acceptance 6) post). Until three years ago I used a regular day to a page diary, alongside a much more complex system of notebooks to keep track of work, side projects (usually special interest things) and general life requirements. When I found this, I suddenly had a place to keep everything together. (Note: I’m not paid or sponsored by Passion Planner. It just works for me). I’ll give you a sneak peek into how I’m using it at the moment, but I’m going to dedicate an entire post to how I plan my time and activities.
The thing I really like about this planner instead of a standard diary is that there is a whole week visible on one open page spread, with the time every day listed by half hour (7 columns). Next to the week spread (an eighth column) is a box labelled “This week’s Focus” another box usually labelled “Good things that happened,” and a quote for the week (I super duper love this). Underneath the week spread on one page is space for to-do lists separated into “Personal” and “Work” tasks. On the other page underneath the week spread is a blank space (which Passion Planner calls “Space of Infinite possibility”).
During this particular week (last week) I was at a point of super tired from a month of insomnia, but needed to get on top of a lot of stuff. I wanted to track how I was using my time, keep a running to-do list, and get some personal stuff sorted. And I managed to do that (hooray!).
I recognise pen and paper planners won’t work for everyone. Again, this is my preference because when I’ve tried to use digital ones, I have the extra stage of remembering to look at it. And I inevitably don’t.
Five: A small wardrobe
I started this when my partner moved in with me. I had a double wardrobe filled with clothes, most of which were uncomfortable or didn’t fit properly. There was also no room for his clothes. It started out as something to downsize the amount of space I was taking up, but turned out to be a really great thing for executive function in the mornings.
Thirteen items/empty hangers to the left of a hanging pair of boots are my winter wardrobe. I also have some other folded items not kept here (tee-shirts and jerseys). It’s probably less than 30 items of clothing all told.
To the right of the boots are off season/items I’m contemplating. Every three months (seasonally) I spend one evening, pull everything out, reorganise and remove things I don’t love or am not wearing anymore. I onsell decent quality things, or reuse the fabric for other projects and fill gaps at second hand shops.
Much like the grocery list, this puts all the decision making in one chunk of time. I then don’t have to think about it again, and I end up with a handful of rotating outfits. Deciding what to wear in the morning is easy: What is the temperature? What is clean? Before I did this, I found myself paralysed with decisions (read: inert for 30 minutes, trying to decide on an outfit) before I ever made it to eating breakfast. I know of other autistic people who purchase multiples of the same thing. I have a little of that, but because I’m a second hand shopper, it’s a rare find.
Bonus: When I started this, I stopped trying to dress as I thought was “expected.” At the time, I didn’t know autism was a factor, but my sensory comfort in clothes improved massively. Another thing to not be distracted by, when I’m ever so distractable to start with.
So that’s how I manage being inattentive, distracted and forgetful. It also helps with inertia, decision making and self-care demands. I’d love to know what other autistic people might do, what systems have you developed? Anything similar?