autistic strategies – The Auld Skald's Fudgel

Yet – tyranny or hope?

Yet. A tiny, simple word that on one hand (the allistic hand) can be incredibly empowering; yet on the other hand (the autistic hand), that tiny, simple word can be incredibly damaging.

Before I knew I was autistic, “I can’t do this, yet”, was a go-to phrase as I rebuilt myself after a suicidal ideation episode… which I now know was an episode, a flare of Rejection Sensitivity Dysphoria (RSD), and part of my undiagnosed autism.

I caught myself using this same phrase just the other day, and caught myself in my own internalised ableism.

While I wanted to write this piece about “yet”, I’ve been going through a rough patch. Autism is dynamic, never the same two days in a row. Sometimes dys-regulation is easy to deal with, other days it is hard. Some days, people-ing is easy, other days it is energy- draining.

Chat GPT to the rescue, then, to write it for me. I’m satisfied with what it generated from my instruction. When I engaged further, to consider other perspectives on this issue, ChatGPT suggested including psychological, educative, cultural, economic, philosophical, historical, and parenting/ family dynamic perspectives. Maybe I’ll look at those in future posts.

Oh, and yes, I call ChatGPT “friend”. Why? Skynet. It’s a generational thing.

Me: Hello, friend. Would you please draft a 1000 word blog post, as a sociologist, about how damaging the word “yet” can be for autistic people, in the context of “I can’t do this yet”, intersecting with ableism and capitalism?

ChatGPT:

Title: The Harmful Implications of “Yet”: A Sociological Perspective on Autism, Ableism, and Capitalism

The word “yet” is often heralded as a beacon of hope and potential, particularly in motivational contexts. Phrases like “I can’t do this yet” are meant to encourage persistence, implying that with enough time and effort, success is inevitable. However, for many autistic people, this seemingly positive word can be deeply damaging, especially when viewed through the lenses of ableism and capitalism. In this blog post, I will explore how the word “yet,” though well-intentioned, can reinforce harmful expectations and pressures, exacerbating the challenges that autistic individuals face in a society structured around neurotypical norms and capitalist values.

The Tyranny of “Yet”

The phrase “I can’t do this yet” operates on the assumption that all individuals can eventually achieve a particular goal if they simply work hard enough. This notion aligns with the broader capitalist ideology that equates personal worth with productivity and success. In this context, “yet” becomes a tool of oppression, subtly suggesting that failure is temporary and that any shortcomings are simply due to insufficient effort. For autistic people, whose abilities and challenges are often misunderstood or dismissed, this can be particularly damaging.

Autism is a spectrum, and each autistic person has a unique set of strengths and challenges. Some may excel in certain areas while struggling in others, and these struggles are not always surmountable through persistence alone. The idea that one can overcome any obstacle with enough effort fails to account for the neurological differences that are intrinsic to autism. It implies that if an autistic person cannot do something “yet,” they are not trying hard enough, perpetuating a cycle of internalized ableism and self-blame.

Ableism and the Myth of Normalcy

Ableism, the discrimination and social prejudice against people with disabilities, is deeply entrenched in our society. It is rooted in the belief that there is a “normal” way of being human, and anyone who deviates from this norm is lesser or defective. The use of “yet” in the context of autism often reinforces this ableist notion, implying that autistic people should strive to become more neurotypical over time. It suggests that their current state is inadequate and that they must continuously push themselves to reach an arbitrary standard of normalcy.

This expectation is not only unrealistic but also harmful. For many autistic individuals, certain tasks or social norms may always be challenging or even impossible to meet. The insistence on “yet” disregards the reality that some aspects of autism are not simply hurdles to be overcome but are fundamental aspects of an individual’s identity. Pushing autistic people to conform to neurotypical standards can lead to significant mental health issues, including anxiety, depression, and burnout.

Capitalism and the Commodification of Ability

In a capitalist society, value is often equated with productivity and economic contribution. This commodification of human ability further marginalizes autistic people, whose strengths and challenges may not align with the demands of the capitalist workforce. The word “yet” becomes a tool of capitalism, pressuring autistic individuals to continually strive for improvement in ways that may not be sustainable or even possible for them.

The capitalist imperative to always be “improving” or “progressing” is particularly harmful in the context of autism. It implies that autistic individuals must always be working towards becoming more productive, more neurotypical, or more economically valuable. This expectation disregards the fact that many autistic people may have different rhythms, energy levels, or ways of working that do not fit neatly into capitalist expectations. The constant push to achieve more, do more, and be more can lead to burnout, a state of physical, emotional, and mental exhaustion that is all too common among autistic people.

Reframing the Narrative

The pressure to conform to neurotypical and capitalist standards is not only harmful but also unnecessary. Autistic people do not need to be fixed or molded into a version of themselves that is more palatable to society. Instead, society should be working towards greater acceptance and accommodation of neurodiversity. This requires a fundamental shift in how we understand and value human abilities.

Rather than using the word “yet” to impose unrealistic expectations, we should focus on recognizing and celebrating the diverse strengths that autistic individuals bring to the table. This means moving away from a deficit-based model of autism, which focuses on what autistic people cannot do, and towards a strengths-based model, which recognizes the unique contributions they can make.

The Need for Structural Change

Ultimately, the issue is not just with the word “yet,” but with the broader societal structures that reinforce ableism and capitalism. To create a more inclusive society, we need to challenge the underlying assumptions that drive these systems. This includes questioning the value we place on productivity, rethinking our definitions of success, and dismantling the ableist norms that marginalize autistic people.

We must also advocate for policies and practices that support neurodiversity in all areas of life, from education to employment to healthcare. This includes creating environments that accommodate the sensory, social, and cognitive needs of autistic individuals, rather than forcing them to adapt to a world that was not designed for them. It also means providing adequate support and resources for autistic people to thrive on their own terms, without the pressure to conform to neurotypical standards.

Conclusion: Beyond “Yet”

The word “yet” may seem innocuous, but it carries with it a host of assumptions that can be deeply harmful to autistic individuals. In the context of ableism and capitalism, “yet” becomes a weapon of oppression, reinforcing the idea that autistic people must always be striving to become more neurotypical and more productive. This pressure is not only unrealistic but also damaging to the mental health and well-being of autistic individuals.

As a society, we need to move beyond the rhetoric of “yet” and embrace a more inclusive and accepting approach to neurodiversity. This means challenging the ableist and capitalist norms that drive our understanding of ability and success and working towards a world where autistic people are valued for who they are, not for who they might become “yet.” By doing so, we can create a more just and equitable society for all.

“Why can’t you be more spontaneous?!”

Undiagnosed autism means you might act, speak or be in a way that others don’t like. I see so many stories on social media about this.

This is another area where I struggle to identify with the experience of other autistic people. In my diagnostic assessment, I scored in the 96.4th percentile for masking and in the 94.2nd percentile for assimilation.

What do those numbers actually mean? It means I masked at a very high level, frequently and with more intensity than 96.4% of other diagnosed autistic people. It means that I adopted behaviours, language and cultural norms to fit in, at a higher level and intensity than 94.2% of other diagnosed autistic people.

But those high scores belie the untold toll of exhaustion and turmoil, the contributing factors for C-PTSD that I would likely be diagnosed with, should I be interested in such a diagnosis.

(I’ll post about late diagnosis,C-PTSD, masking and assimilation on another day.)

“Why can’t you be more spontaneous?” That’s the way my autism runs.

Masking and unmasking

My difficulty in being spontaneous is related to my autistic need for routine and structure. Changes in plans or routines can be disabling; masking and assimilation means covering that up so my distress is not seen.

Since my autism diagnosis, I’ve been working on unmasking, unwinding all those things that cause internal stress simply by virtue of being aware of my differences.

The challenge is engaging with society, unmasked.

“Why can’t you be more spontaneous?” That’s the way my autism runs.

A Francophile and Brisbane’s annual French Festival

I’ve been aware that I need to start getting out and about again. Since my diagnosis, I’ve been a bit reclusive, not going out much, just going out for my Shebah work and groceries, and the occasional movie.

I heard promotions for the 2024 French Festival, and decided I would go. I bought a three-day pass, thinking that it would Gove me some flexibility around Shebah bookings.

I went along, catching the bus down to South Bank. Getting to the festival was easy. My autism made the rest of it tricky.

My planning was simply to go to the French Festival. I didn’t plan for what to do at the festival. And that was my unmasked downfall.Wandering aimlessly might sound wonderful to some people. For autistic me, it was distinctly uncomfortable.

“Why can’t you be more spontaneous?” That’s the way my autism runs.

Regathering and planning another outing

After thinking deeply, on the bus after leaving the festival, on the drive from the bus station to home, and at home, I realised that the discomfort I was in was from the aimless wandering.

Hence, I then planned outings that I could set up a program for; no aimless wandering.

… drumroll … The Ekka.

The Ekka, or more correctly, the Royal Queensland Show, is a celebration of agriculture and a joyful meeting of country and city in the Brisbane CBD. It started in 1876, and has run every year since except for:

1919 – because of the influenza epidemic;
1942 – during World War Two, the showgrounds were used by the military, including what we now know as The Old Museum;
2020 and 2021 – during the Covid-19 pandemic.

Yes, the Ekka is an institution.

My Ekka memories

I went to the Ekka many times as a child. My parents bred and showed dogs, so we were at the dog show that is part of the Ekka. We had backyard chooks, so I would go to the poultry pavilion.

I remember sitting in the stands at the main arena, watching the cattle and horses being paraded, the horses being put through their paces in dressage and show jumping.

I remember the Ekka “must dos”; the showbags which, back then, were sample bags; the dogwood dogs, the fairy floss and the now famous strawberry sundaes.

The Ekka 2024

I bought a ticket for Tuesday, because at the dog show, Tuesday was the day for Terriers (Group 2). I grew up with Australian Terriers and Scottish Terriers that were showed. Of our dogs, in the 1970s, we had three champions (Australian Terriers) and one triple champion (Scottish Terrier). So, yes, there is a connection to Group 2.

But then, I heard a callout for volunteers for The Common Good, the charity that put on the strawberry sundae stands, raising funds for The Common Good, the Prince Charles Hospital Foundation. I decided to register as a volunteer.

Ekka Strawberry Sundaes

My autistic heart was singing. Registration was easy, on-boarding was slick and well done. I signed on for four shifts as a Cashier.

The Ekka runs for nine days, from Saturday to Sunday on the following week. My four shifts were from 5pm to 9.30pm, Sunday, Wednesday, Thursday and Sunday.

First shift, at the Gregory Terrace stand. They had four cashiers for two registers, so I volunteered to stay out the back, cutting and slicing strawberries. For the first shift, I was very nervous, and anxious. So when they needed strawberries cut, I jumped in. Having a knife in my hand, a cutting board in front of me and food to be prepared; that’s my happy place.

Second shift, at the Plaza stand. They only had one register, and was on that register for my full shift. Busy, busy, busy. And I had a golden moment.

Third shift, back at the Gregory Terrace Stand, on the registers. A negative experience.

Fourth shift, at the Gregory Terrace stand, in the registers. Good as gold.

“Why can’t you be more spontaneous?” That’s the way my autism runs.

The golden moment

At the Plaza stand, we had two cashiers for one register, so one of us ran the register and the other handed across the card that was to be presented at the next window to receive your sundae/s.

I was on cards when I noticed a young man come up, wearing a sunflower lanyard. I noticed his speech pattern, eye contact, and the way he moved, and knew he was autistic. As I handed him his card, I told him that he was “doing great, autistic brother, from an autistic sister”.

His smile, and the slight change in his posture, made my day.

So imagine my delight when he came back, later in the evening. He looked at my name badge, and in a measured way, called me by my name, and said I was also doing great, “autistic sister, from an autistic brother”.

I nearly cried.

If you have any hidden disability, you know how moving it is to be seen. My words obviously affected that young man, the same way his reciprocation moved me.

When I think about that young autistic man, going to the Ekka on People’s Day, usually the busiest day of the Ekka, my heart swells. (Autistic hyperempathy.) Deploying his coping strategies, not masking, wearing the sunflower lanyard, moving about the Ekka.

So yes, I’m counting those combined experiences as a golden, precious moment.

The negative moment

At the start of each shift, I disclosed my autism. On the third shift, another cashier was a retired teacher. My experience with her was less than stellar. She questioned my diagnosis and didn’t believe it was possible to be diagnosed so late in life. I had to explain Level 1, 2 and 3 support needs for autistic people.

Later in the evening, this person socially excluded me from the social chat among the cashiers at the end of the shift.

I had a little RSD (Rejection Sensitivity Dysphoria flare, but then reminded myself – it was her loss, not mine.

In conclusion

So, no, I didn’t get to see the dog show. I did have a fantastic experience volunteering for The Common Good. And I had that golden moment.

I’ve bought myself a sunflower wristband and pin, so maybe there might be more autistic recognition, and potential for more golden moments.

Going to big event, with a definite plan of what to do, made a big difference in my autistic experience at The Ekka, in contrast to the aimlessness French Festival.

My next test of my coping strategies at an event will be a trip to the Eat Street Markets at Hamilton. A plan – to explore it as it is now, and have something to eat.

Here’s to the next steps in my journey as a late diagnosed autistic women.

Bibliophile to the rescue!

Eric Van Lustbader, aikido, and self.

In a previous post, I wrote about the clean start, the reset, for my workroom and bedroom. Now the challenge is to keep that momentum going.

In my 20s, all the way back in the 1990s, I discovered Eric van Lustbader’s Nicholas Linnear novels. I was hooked. The beguiling mix of Eastern mysticism, Western pragmatism, martial arts, the corporate shenanigans, the violence; I was besotted.

Addictive personality or autistic special interest – the heartbreak of self-deprivation
One of the things that breaks my heart, that makes me grieve for my younger self, is how I denied myself things. Things, like van Lustbader’s books, because they were enthralling. I used them as a launching board to find out about so many things, including aikido. But even though they were books that I wanted to read again and again, I denied myself, because I was afraid I had an addictive personality. In reality, all I had was undiagnosed autism, and a new-found special interest.

You see, while addictive personality is not a disorder under the DSM-5-TR, it is generally used to describe a compulsive need to engage in certain behaviours or with certain substances. On the surface, that can look a lot like an autistic special interest, and an autistic special interest can look a lot like an addiction to a thing, or a compulsion.

So, imagine my confusion and dilemma, when I didn’t know I was autistic, and found things that were special interests. Imagine the autistic need, the desire, to go down that rabbit hole, and misdiagnosing yourself, from your teenage years as potentially having an addictive personality. Imagine containing yourself, depriving yourself of that joy, because you thought you may have had a mental health disorder.

One of my autistic traits is hyperlexia, a deep fascination with words and language, that often presents as early acquisition of reading and written words. I’m also a bibliophile to go with that. Books have always been my best friends. Rediscovering an old friend, hidden on a bookshelf, is a rare delight. But the books I have denied myself, because I thought I had an addictive personality… such as Dungeons and Dragons and the spinoff Dragon Lance, and Margeret Weis’s “Star of the Guardian” series. These are just the ones that have come up in conversation recently. There would be tens, hundreds of books that I read once, found utterly delightful and enthralling, that I put aside because I thought I had an addictive personality.

Part of me rages, now, and grieves, for those books that could have been lifelong special interests, maybe a missed genesis for writing fan fiction, maybe a missed opportunity to research the issues present in the books, acquiring more knowledge… so much missed that could have been so rich and satisfying.

Fast forward to today, restarts and maintenance
In thinking, though, about my issues with executive allofunction (my positive language, instead of using “dys”), and the fresh clean start of my revived workroom and bedroom, I remembered some of the principles of aikido. Dusty memories of those books by Eric van Lustbader and his character Nicholas Linnear, and the things I learned from the books about martial arts, and then went on to research.

One of those things from those books was aikido – avoid and deflect. In a lightbulb moment, I realised that that is how I could manage my executive allofunction; by avoiding and deflecting. Now, it may sound crazy to talk about managing my mind as if it’s a third party. I know it isn’t; it’s just me. It is, though, almost doing an end run around myself, or rather, knowing where the blocks are, and doing an end run around them. Avoid, and deflect.

How?
How does this work for me? Follow my mental path. This is going to be like a braid, several strands woven together and coming together at the end.

Thread 1. My good-as-brand-new workroom, I need to keep it that way. So if I also use it as my workout area, as well as my study and writing area, my collectables in display cabinets, and my sewing equipment temporarily put aside… then if I move those desks from being back to back, to being against the wall, then I have room for my exercise bike and Nordic walker. And the newly cleared drawers in the display cabinets can hold my yoga gear. Then there’s a space there for a yoga mat, and a space there for dumbbells… well, if I’m going to use that part of the room as a workout area, then I need to keep the chaise clear for a post workout transition. And given that one of my workout routines includes prone shoulder abductions, I want a clean carpet.

So cleaning isn’t a function in and of itself. It is an adjunct to my workout routines.

Thread 2. Why are workout routines so important? They’re important because I discovered I am autistic, and autism isn’t just the mind, it is the body as well. Now, I’m 52, and don’t have the “chunky” movements that some autistic people have, likely because of the “inadvertent supports” I received as a child, in ballet, speech and drama, piano and singing, and cycling, and walking and showing dogs.

However, some 60% or more of autistic people are also hypermobile. (Waving hello.) Yes, that’s me. I have hypermobile knees and hands. I’m researching the concept of “masked” hypermobility at the moment, as it may be possible that the chronic muscle tension I have is not necessarily all from the stresses of my life, but is masked hypermobility. Have my muscles tensed to stabilise hypermobile joints? That theory makes sense when I recall the time I dislocated T3 (the third vertebrae in the thoracic section of the spine) inwards. My osteopath was really scratching his head over how I did it, and how to get it back into its proper place so I could breathe properly again. My workout routines are to stabilise joints through the muscles around them. Hence, workout routines.

Thread 3. My financial situation already tells me that I’ll be renting for the rest of my life. (Because I spent nearly $300,0-00 on my late husband’s care, over and above his pension and the NDIS – Huntington’s Disease is expensive.) So, I have a plan that my retirement life will be peripatetic, calling to my ancient Romany DNA; van life, roaming around Australia. That will need strength, fitness, mobility and agility. I figure I’ve got 18 years to get ready for that. Hence, workout routines.

Thread 4. Sewing. Another special interest. But I don’t have any of my homemade garments in my wardrobe right now, because they don’t fit me at the moment. Weight loss isn’t the goal. Getting back into those dresses and skirts and blouses – that’s the goal. Hence, workout routines.

Bring all those threads together into my daily workout routines that I need to keep my workroom clean and tidy for. Avoid and deflect. I’m not cleaning. I’m making my workouts possible. Avoid the PDA, the RSD, the overwhelmed autistic freeze, the need for a body double. Avoid and deflect.

My daily workout routines – now on my fourth week.
Monday – knees and shoulders – toe raises, walking backwards, dynamic lunges, toe raises to heel lifts, static lunges, shoulder stretches, and twists

Tuesday – shoulders and arms – bent arm lateral raises, bicep curls, reverse bicep curls, hammer bicep curls, triceps curls, external and internal shoulder rotations, prone horizonal abductions, and prone lower arm raises. These have progressed from 500g weights to 2.5kg dumbbells, with sets increasing from 5 to 2 x 10.

Wednesday – hips – hip abductions, prone side leg lefts, cat/cow, hip adductions, high-kneed marching on the spot, and butterfly pose.

Thursday – core, all yoga poses – cat/cow, upward/downward dog, dead bugs, boat pose, half table pose, twisting boat, side bends, child pose.

Friday – yin yoga hip openers – sleep swan, butterfly, cat/cow, half butterfly, and a repeating flow from cat/cow to child to frog, back to child, then cat/cow

Saturday – whole of body strength – push-ups, split level lunges, squats, overhead presses, walking lunges, bent over dumbbell rows.

Sunday – gentle whole of body stretches. – marching in place, side steps, toe tape, and seated hamstring and quad stretches, seated calf and shin stretches, seated upper back and chest stretches, seated ankle rotations, wide legged forward bend, standing to raise to heel raise flow, shoulder rolls, and the weighted hula for some fun.

This is why I have been saying lately that my autism diagnosis has given me a new lease on life.