Managing Executive Function 2: Planning

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.

 

Advertisements

One year on in Three vignettes

I find numbers meaningful.

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.

 

Managing Executive Function #1 – Overview

[CN: Mention of food in grocery list section]

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

20180817_135556
Handmade purple and gray sign of things I need to be reminded of daily and weekly

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…

First: Water

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.

Evening bullet list: Yoga. Dinner (check menu). Journal.

PM bullet list: From 10pm: Put jug on (tea); PJs and wash face; Blurred out personal stuff. From 10:45: Put clothes away; Moisturise; Bathroom and bed; 11 – 11:30: Read; LIGHTS OUT

Weekly (evenings) bullet list: Dishes (daily); Plan groceries (Tuesday); Stew fruit (when needed); Change the cat litter

Saturday bullet list: Fresh PJs; Fresh Towels; Fresh Bedsheets; Vacuum

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

20180817_135810
A yellow week planner with days of the week, next week, and a to do list section. It is filled in with a daily menu plan, items that have run out, and a completed 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

20180817_141243
A sequined purse containing things I need for leaving the house. It is sitting on top of a larger canvas shoulder bag with a phrenology brain diagram printed on it

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

20180817_135930
Front cover of my 2018 Passion Planner – Lavender with an embossed pattern that I have coloured with metallic gold and green pens

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.

20180817_140142
Double page spread of the Passion Planner (described below) for the week August 6-12. Time chunks are filled in with different coloured highlighters

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.

20180817_140644
Clothes hanging in a wardrobe

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?

Perseveration

I write every day.

If I write nothing else in a day, I set aside 30 minutes every evening to write just for the sake of writing. I use a journal and simply pour my stream of consciousness out. I have to do it for three pages, although I don’t limit myself to only three if the flow is good.

During the process of discovering that I’m autistic (link to my discovery story) I learned something very interesting: neurotypical people have quiet time in their minds.

I say neurotypical, because others I know who are neurodivergent but not autistic have also told me their minds are never quiet.

My mind never stops. Ever. I cannot recall (outside of sleep) a peaceful time in my head. Even when there’s nothing in particular to think about, my stream of consciousness is perseverative (this is a term that means something happening over and over, seemingly without end).

Now, I won’t usually be sharing my private journal writing. That’s my private writing. But one day recently I caught a sample of my autistic mind in shut down, perseverating. This is what it’s like in my head.

Writing writing stream of thought writing
I’m doing this because I’m trying to write every day but I’m so wiped right now that I think this is shutdown-ish
Just want input basically.
Bah bah bah
Making random noises in my head
Just watched a stand-up set “Mo’Nique I coulda been your cellmate” and it’s just the closing music over and over
Dah-dah-dah Dah-dah-dah
Can’t even remember what the words were
Dah-dah-dah Dah-dah-dah Dah-dah-dah
I should be stream of thought-ing but just writing that repeating bar over and over and over and over and over and over and over and over and over dah-dah-dah dah-dah-dah

Seems pointless
Perseveration
Perseveration
Perseveration is the game. Perseveration repeating the same.

Dah-dah-dah
rhythms of three
stim-stim-stim
Purple Monkey Dishwasher
Should watch some “Scrubs” again
Don’t have Scrubs
Would it still be joyful?
Have I seen it too many times now?

Charlie Charlie Charlie Charlie
Charlie came in the room
Dah-dah-dah Dah-dah-dah
Water bottle
Still so bad at drinking water. Is that an autistic thing?
Why do we forget or not realise to drink water?
Messy hypothalamus and bodily sensory perception?
Dah-dah-dah Dah-dah-dah Dah-dah-dah
Go! Go!

[Final note: Charlie is my cat]

If I ever seem distracted from the outside, I probably am. By the non-stop random twists and turns of my unquiet inner monologue.

“I AM: Living with Asperger’s” and centering the autistic narrative

Alternative Title: “Shove that in your “Theory of Mind” and smoke it”

[Content note: Physical and psychological violence towards autistic people; misconceptions and stereotypes about autistic people; marginalisation and othering of autistic people]

Background information

Television New Zealand (TVNZ) has a docuseries currently airing called “I AM”
I’ve watched the whole series and it generally seems to be great. It’s sharing the stories of marginalised New Zealanders and what life is like for them. Three episodes so far have covered living with HIV, living as a transgender woman and, the interest of this blog, “living with Asperger’s.”

[Note: I could write an entire post about the linguistic gymnastics used regarding person-first/identity-first language regarding autism. Another time perhaps. We should respect individual preferences, but also recognise that roughly 80% of autistic people PREFER identity-first – “I am autistic” versus “I have autism.”]

If you have access to this series (On Air or On Demand in Aotearoa), I do recommend it. But, I just have to point out some issues with the “living with Asperger’s” episode. Why? Because that’s what I’ve committed to do – speak up (or write out, or whichever communication I’m using) regarding the realities of autistic life, smash stereotypes, and maybe in small ways make things better for us. Especially for coming generations.

“Asperger’s” is an earlier label for certain people on the autistic spectrum. The most recent version of the Clinical Psychology Diagnostic and Statistical Manual (DSM-V) absorbed a separate diagnosis of Asperger’s into Autistic Spectrum. This was to better recognise that these are not separate conditions, but that the expression of autistic traits varies for individuals.

“I AM: Living with Asperger’s” covers this, and plenty of other information about autism which is TECHNICALLY accurate. However, this accuracy is from a clinical psychological and allistic (non-autistic) viewpoint. So, I have some major points to push back on.

What they always seem to do to us

My first two major issues were with the construction of this episode. I watched this episode first (of the three), and it struck me even harder after watching the other two.

First: In comparison with the other episodes David RS Greer (whose story is shared) does not have his point of view CENTERED.
The power of this docuseries lies in CENTERING the stories of people who are otherwise MARGINALISED. But in the case of Mr Greer, there is more talk about Asperger’s/Autism and Mr Greer from other people than himself. The other two episodes don’t even include expert commentary (more on that later).

This is a particular problem for autistic people and autistic stories. There is a broad, cultural problem (and in fact, it is the story of our LIVES) that we are silenced, ignored, disbelieved and told by others what we are like, instead of being heard or acknowledged about how we experience the world. Because we have difficulties with social and emotional communication (especially spoken communication), there is an assumption that we cannot at all tell our own stories.

We are pushed into silence – something that Mr Greer talks about. He describes people “surrounding him with silence.” They stop talking, abruptly, when he is around. They ignore him. I find it deeply upsetting, that in a documentary that is supposed to centre marginalised stories, they propagate this when it comes to the autistic story.

Beyond upsetting, to the point of harmful for autistic people, is the propagation of the stereotype that we are violent.

Now – I am not for one minute stating that we cannot be violent. We are human. Have you all seen how violent our species is? We are human and have that capability as well. BUT. We are more likely to have violence enacted upon us. If we do act violently, it tends to be motivated by fear, anxiety, and self-defense.

Following from the de-centralisation of Mr Greer’s story, the documentary instead ends up focusing on two violent acts he committed, instead of what motivated them. These violent acts cannot be removed from the story – they are a central part of Mr Greer’s discovery of his Asperger’s diagnosis at 23 years old.

Mr Greer was diagnosed with Asperger’s after he was ambushed by three men who attacked him with a metal baseball bat. Following from years of bullying and maltreatment, Mr Greer carried a knife for self-defence. After he was attacked, he used this knife to defend himself and try to escape. In the fear and confusion of the situation, he severely injures one of his attackers. Police are called, Mr Greer is placed in solitary confinement for four days with limited food and charged with “attack causing grievous bodily harm.” His wounds are not attended to. [There is no mention of the outcome for his attackers.] The following 9 months of Mr Greer’s life were taken up by the court system and consultant psychologists. He received a diagnosis of Asperger’s – which brought a great deal of relief and understanding. He was also convicted of a crime.

See what happens when we centralise the story which should be centered the whole time? This is the documentary I was deeply longing for. TVNZ disappointed me. I could share the whole story for you with Mr Greer centred in the narrative. But, I won’t take any more of his story from him than that previous passage, and I am deeply sorry that I have felt the need to use that portion to demonstrate a point.

The Expert Commentary

Now, it didn’t surprise me that there was expert commentary. We’re talking neurology. We’re talking psychology. I expect it. What surprised me, was that there was no similar commentary in other episodes of “I AM.” In the episode about living with HIV, there was no expert commentary on what HIV is, the medications that were mentioned. No expert insight in the episode about living as a transgender woman into hormone replacement therapy, or from transgender activists. Again, this is decentralising Mr Greer’s story.

The first expert introduced was Tanya Breen, a consultant clinical psychologist who specialises in autism and working with the justice system. Ms Breen excellently explained autism from a clinical perspective. She also did a wonderful job of describing meltdowns, which had previously been consistently described as tantrums.

The biggest issue I had here was when Ms Breen brought in the “Theory of Mind” concept. She describes Theory of Mind (ToM) as it is commonly described.
“People with good ToM understand that everyone has unique thoughts and feelings.”
She then introduces the common misperception that autistic people have poor ToM.

Again, I should probably (and will) write an entire other post on ToM, why it’s rubbish, and why autistic people and allistic (non-autistic people) who work in relevant fields are critical of this awful concept from the research of Dr Simon Baron-Cohen.

For now, I will state this very clearly: This is categorically false. We understand that everyone has unique thoughts and feelings. We have empathy. Sometimes, we engage in this too much, to the point that we worry that our slightest actions have upset someone or caused them hurt.
What we have difficulties with is reading subtle social cues. We have difficulties with filtering and processing sensory and emotional input. We understand individuals have a unique internal experience. Non-autistic people aren’t always direct in their verbal communication, and we don’t assume and attribute additional emotions beyond what you say because – see previous about how we’re having difficulty filtering and processing our internal and external information feeds.
This looks to YOU (allistic people) like we are not empathetic, or don’t understand your perspective. We do. Just sometimes it’s in a different time-stream to what you want it to be in.

The second expert commentary, from Nathan Wallis (neuroscience educator) had me yelling at the television. Now, perhaps my reaction is out of line here. Maybe I’m overly disappointed. Maybe my anger here is misplaced. I don’t think it is, frankly, and I think I’m only inserting this caveat because I’ve been taught by society’s desperate need to modify my behaviour that anger is wrong.

This was the first time I’ve heard of Nathan Wallis, and yes, we are colleagues because I am also a neuroscience educator and science communicator. Perhaps my anger and disappointment is misplaced because I have the added advantage in this instance of also being autistic. But, autistic or not, this colleague did not do his research.

Mr Wallis opens his commentary with “We think of all humans now as being on the autistic spectrum.”

As both autistic and neuroscientist my response is: No. No we absolutely do not.

Next: “Asperger’s was previously someone up the high functioning end of autism.”

Technically true. But, “High” versus “Low” functioning labels are damaging. They are used to divide us, have a history in eugenics, and either dismiss our strengths or deny us supports. This didn’t so much make me angry as just being poor form.

Next: Mr Wallis talks about our (autistic) frontal cortex versus a typically developing frontal cortex with an undertone that ours doesn’t develop. It absolutely does. In fact, since our brain development tends to be more rapid and overly connected, our frontal cortex might get finished sooner (average age for final frontal cortex development is 25).

The term “Neurotypical” versus “Neurodivergent” is consistently used incorrectly. And, used in a similar way to saying “We’re all on the autistic spectrum.” So, let me define these terms.

Neurodivergent refers to people whose course of brain development or general daily function, varies from that which is typical in the majority of the population. It includes (but is not limited to) autism, attention deficit/hyperactivity, schizophrenia, dissociative identities, specific learning disabilities (e.g. dyslexia, dyscalculia), neurodegenerative disorders, a huge number of things.
Neurotypical: Not having one of these neurologies.

Autistic versus non-autistic people, as I’ve used previously in this piece, is the term “allistic.”

So, like I said, up to here this was a lack of research.

Here is the thing that made me angry. Especially because the framing of this documentary focused on violence.

When Mr Wallis was talking about the need for understanding of autism in the justice system and how situations must be re-examined in light of this (yes…I agree up to here…)
“Because that person doesn’t really have free choice. Because their brain is structured to make them more likely to act this way.”

If you’re not screaming along at the TV with me at this point, you might not have been listening. This is flat out horrendous. I always aim for kindness and compassion in my science communication and neuroscience education efforts. This places us as “The violent other.” As quasi-humans who DON’T HAVE FREE CHOICE.

Now, free will is debatable generally, for everyone. Don’t believe that? Buy me a cider some time, we’ll question our lives as “rational actors” together. But for now, as a neuroscientist, as a science educator, and as autistic, Hear Me.

Our brains are NOT structured to make us more violent, nor do we lack control over our behaviour.
Our brains have difficulty filtering and processing sensory, emotional, and communication information.
This makes allistic people think we are weird. Some of them treat us with violence. Enough of them that we think it’s normal.
When you think something is normal, and don’t realise that other people aren’t overwhelmed by their surroundings as you are, defending yourself with the same is rational and reasonable.
When you learn it’s wrong, you don’t feel anger at the people who hurt you.

You feel guilt and shame that you could have behaved that way towards another person.
Shove that in your “Theory of Mind” and smoke it, Simon Baron-Cohen.

And unfortunately, the great analogies Mr Wallis made about the experience of autism just don’t make up for this for me. See how I’ve been trained to sandwich my critique with a compliment? They were great analogies though, I have to say that.

I can do this type of education without being angry. I try not to write when I’m feeling certain ways – it colours it. But I’m also done with sitting back and being silenced, with being othered and treated as a sub-human.

I’m sure the other neuroscience education work Mr Wallis does is probably great. But if you’re in Aotearoa and you want a neuroscience educator for autism – e-mail me?
And, if you’re in Aotearoa, tune in for “I AM.” “Living with Asperger’s” was disappointing, but the series as a whole is hugely valuable.

Sticks and Stones

[CN: This post contains sanist/ableist slurs and references/descriptions of bullying/abuse]

Please, excuse my absence. I know this blogging gig depends on consistency, but at the moment I’m trying to finish off a project seven years in the making.

It’s a project I’m absolutely sick of, over and done with. But it keeps dragging on, and dragging me back into trauma experienced during it. So I end up in a great big cycle of demand avoidance AND hyperfocus. That is – I can only focus on THIS ONE THING and at the same time I have to drag myself through proverbial muck every day to try and progress it.

I watched a fair bit of TV, read some books and slowly slowly slowly managed to finish one part of the thing. This afternoon that part will be completed and it’s one step closer to freedom from it and moving on to new ventures.

Here’s something I wrote once it was all sent away for approval.

Words, Words, Words. I’m so sick of words.

Sticks and stones may break my bones but words can…
Shape how we think about and experience the world
Cause lasting psychological damage
Be used as weapons
(The pen is mightier than the sword)

“Stupid” was the teacher who bullied me for a year
Who, when I broke a wrist in the schoolyard, made me stay in school
Made me keep writing for an entire afternoon

“Crazy” was getting slammed at knee and gut with an airplane chair
When I asked them to get off me and refused consent to occupy my space, told me they had paid for that space
Maybe I should have considered purchasing two seats
Meanwhile, they were taking up three and I tried to make myself fit in two-thirds

“Insane” was every occasion of gaslighting
Too numerous to count
Your experience, feelings, memory are not real
“Did you do something to bring it upon yourself?”

Only if I actively did something by happening to exist

Every other sentence created by other humans, in this world, in which I exist
“It’s crazy!” “That’s insane!” “How stupid!” Idiot, Moron, Mental

Telling me, that’s what I am
The butt of a joke
Not good enough
Everything wrong
Confusing, Surprising, Exciting, Ridiculous, Excessive, Bad decisions, New designs, Bold ideas, Heavy discounts

Are adjectives really so hard?
Or do you just find it easier to slap me psychologically with each sentence?
Remind me of all this trauma?

Oh! But words can never hurt you.

 

Very honestly, I’m not sure the next chance I’ll get to write something for here. I’m about to delve back into the same cycle for stage two of project completion. I hope it won’t take me too long, but you never know. Until next time, Keep fighting the good fight

Gluten free did not treat my autism

Content note: medical stuff, physical symptoms including gastrointestinal and vomit, food, medically prescribed diet, possibly other specific things (I’m sorry, it’s late and I’m tired – please let me know anytime if there’s something you needed)

The trend (and it is a trend) of using gluten free diets to “treat” autism is not exactly new news to me. My coeliac disease reared its ugly head a full five years before I found out I’m also autistic. So I came across this in trawling through gluten free and coeliac stuff (and associated rubbish information) a while ago. A large amount of the rubbish information I refer to is the general feel that gluten free diets are so amazing and cure all ills because gluten is apparently evil and destroying all of our health.

That’s just not true.

So, as someone autistic and on a coeliac compliant diet, I have thoughts. Oh gosh, do I have thoughts. This became a very long piece of writing, so I’ve tried to break it into sections.

First, let’s start with some basics about coeliac disease.

COELIAC DISEASE

Coeliac disease is a chronic, autoimmune condition where exposure to gluten (a protein found in the wheat family of grains) mostly through dietary consumption, results in an attack of the lining of the small intestine. Like many autoimmune conditions, individual symptoms can vary widely. Also like many autoimmune conditions, this results in vast underdiagnosis of coeliac disease in the population.

Coeliac disease is not just a bit of bloating and an upset stomach.

Severe bloating is one of the most common symptoms. When I say severe, think “I suddenly become approximately eight months pregnant and can’t fit in my clothes anymore.”

Upset stomach doesn’t cover the gastrointestinal involvement by about a factor of ten. Severe pain and abdominal cramping to the extent you can’t hold yourself upright, or flat out stay standing usually. Stabbing feelings can occur anywhere within the abdominal region. Any given individual may experience constipation, diarrhea, or switch back and forth between the two. The commonality, regardless of which of these experiences occurs (and we’re going to use the clinical description) are that “stools are large, voluminous and foul smelling.”

Wait, aren’t all stools foul smelling? Why yes.
A more accurate description might be of something that has emerged from the depths of Hades itself. “Foul smelling” is a euphemism, which I suppose I’ve ruined now.

At the other end of the gastrointestinal tract, vomiting, nausea and reflux are common occurrences. From here, mileage starts to vary more widely.

People, including medical professionals, assume that coeliac disease presents with weight loss, or a wasting condition. In reality, approximately 60% of cases present with weight gain.

A skin rash (clinical name dermatitis herpetiformis) is thought to only occur in childhood presentation. Every coeliac adult I know reports this particular symptom. Rash doesn’t quite cover it either. Any allergic type reaction that your skin can have seems to occur. Whatever it happens to look like at the time, it’s painful and itchy. It can also occur from skin contact alone, but that’s not accepted by the medical profession. Apparently the gluten must be ingested, but most coeliacs beg to differ.

Because the major point of attack is the small intestine, any number of “conditions of malnourishment” can occur. The most common (and the only one they seem to test for) is iron deficiency. Others I’ve heard about include potassium, sodium, B vitamins, effects on cholesterol levels, among a host of others. Anything you get from food can be affected by the loss of adequate absorption through the intestine.

Coeliac disease can lead to ovarian infertility (the same doesn’t seem to be true for testicles). This is so common, it’s now suggested that anyone presenting with unexplained ovarian infertility should be tested for coeliac disease.

Most people report “gluten fog” which describes effects on mental function. Primarily this is difficulty concentrating, irritability and extreme fatigue. Some people report additional neurological effects, including me.

Maybe that’s because I’m autistic and my neurology is already different. It’s possible. But that doesn’t mean it’s necessary (although there’s some interesting research to be done at the overlap).

The most common neurological effect of coeliac disease is gluten ataxia. Ataxia is a loss of control over walking. I’ve always been clumsy, but this was to the next level. Mostly, my legs would just collapse. But there were some particularly outstanding strange things. One time, I was teaching a class and moving around the room. I stopped to help a student. I was on one knee, stood up, and turned to start walking in one direction with my upper body. Meanwhile, my legs headed off in the other direction. Those extreme situations were absolutely not normal for me.

I am unsure whether this occurs as a broader neurological effect of coeliac disease, but for me it exacerbated specific speech production difficulties. My general “losing a thread of speech somewhere in the middle of it” and “not able to produce a word before searching through my thoughts and eventually just describing around it” happened with much greater frequency. I also had an increase in jumbling my words, resulting in some rather interesting sentences and contractions.

How did it interact with autistic traits?

I remember the ataxia and speech effects because I am highly aware of my own body and my speech/language. I was an unaware autistic at the time, so I can’t say much with any degree of certainty.

Meltdowns/shutdowns were a daily occurrence. At the time, I thought it was simply because I was so fatigued, stressed and in pain. And that’s true, to an extent. But I wouldn’t have described them as being related to an autistic experience.

I do remember feeling constantly on the verge of snapping. I was starting every day with practically no spoons. Going to work teaching and doing research, juggling medical appointments, not sleeping most nights due to either insomnia or being awoken to vomit. I would get home at 6 or 7pm and just collapse on the couch. I expect my partner would describe plenty of “challenging behaviour” from the time. He was perfectly understanding that I was operating on a negative spoon allowance.

Once I was finally able to go gluten free/coeliac compliant (you have to wait until after having intestinal biopsies taken), everything improved rapidly. Like, about 4 days rapidly. It took a few weeks for constant abdominal pain to clear. I still remember the strange, sudden realisation that the pain had gone, after being in pain for such a long time. It took close to a year for my bodily operations to return to something approaching “normal” for me. Exposure to gluten now flares my symptoms for up to a week as long as it’s only a single meal.

Gluten free trend diets and “treating autism.”

To be perfectly blunt, people who “just decide” to go gluten free frustrate the hell out of me. A gluten free diet, especially a coeliac compliant gluten free diet, is hard to manage, expensive, and largely not catered for outside of your own kitchen.

Gluten free diets are indicated in three medical conditions: Coeliac disease, wheat (or other gluten containing grain) allergy, or irritable bowel syndrome (managed with something called the low FODMAP diet). Gluten free diets are NOT, repeat NOT healthier for you if they are not indicated by one of these conditions. Just like people who eat vegan or vegetarian diets, gluten free and coeliac compliant diets have to be managed to ensure appropriate nutritional intake. A gluten free diet actually increases the risk for specific vitamin deficiencies for nutrition gained from the grains which become excluded.

Unlike the gluten free diet trend, my diet means I have had to learn a lot about cross contamination. This also means I’ve had to generate a script of questions to ask at restaurants to find out if what I’m getting is truly gluten free, or if it’s there to cater to the trend dieters. I have a list of instructions people have to follow if they wish to cook a meal for me.

I can’t eat food prepared in a common deep fryer, cooked in the same cooking water, or toasted on the same grill or in the same toaster. Hands and utensils must be cleaned before coming into contact with food prepared for me. Products containing gluten cannot be on the same dish as my food. It’s not a simple case of just ordering items listed as gluten free or even purchasing products labelled as the same. Both have left me seriously ill.

My gluten free compliance extends to everything that could possibly make it’s way into my mouth. It’s not just food. The big three are medications, personal hygiene products and make-up. I cannot consume ANYTHING that I do not know where it has been or what it has in it. There is no “oh, I’ll just have a little bit, it’s my cheat day.”

And wait for it, if this blog goes any kind of distance in terms of views/reads there’s bound to be a couple of responses, that I will address before they happen. One: “Oh, I went gluten free and it was amazing! It’s the best thing I’ve ever done, I feel so much healthier!” Two: “My child is autistic and we put them on a gluten free treatment diet and now they are great and their autism is so much better!”

First – I believe you. However, it’s not because gluten is evil, everyone should go gluten free, or that gluten is responsible for autistic traits.

In all likelihood, you have coeliac disease (or wheat allergy, or IBS). This might be especially true for some autistic youngsters.

There is a high concurrence of autoimmune conditions with autism. Coeliac disease is most definitely underdiagnosed in the general population. The way it messed with me, an autistic adult who already had a great deal of coping skills, can tell us something about autistic children.

They are in pain. They are confused about why their body is suddenly not doing what it used to and seems to be rebelling against them. They might not be able to describe what’s happening to a professional, plenty of whom don’t seem to recognise coeliac disease when it’s in their office consistently for fifteen months (or more).

Going gluten free doesn’t “work” because gluten is making us all unhealthy. It worked because you, specifically, might have needed that. Likewise, a gluten free diet won’t help with a child’s autism. It will help them with the other gastrointestinal issue, allow them to manage in the world better without pain and stress, and allow them to be adequately nourished. You might perceive this as “less problem behaviours” but it’s really that a problem has been solved for your young person.