I Am Not Your Nightmare
By Lee-Anne Ford
Raise, rise, recognise reductionism, realise realities
End excuses, embrace equity, empower existence
Sigh, smile, see struggle, strength, stims, silence
Paint pain pink, prioritise presence, push past pity
Ease, echelons echo, elevate empathy, erase empty eulogies
Clean co-existence, challenge condescension, cultivate connection
Thrive together, think thoughts, trust tomorrow
Want the whole Anthology? It’s here.
April is Autism Awareness Month. But that’s wrong. We don’t need awareness. We need acceptance.
We need acceptance of the Level 3 autists with significant challenges.
We need acceptance of the Level 2 autists with fewer challenges.
We need acceptance of the Level 1 autists, like me, with fewer challenges than a Level 2 autist—but challenges nonetheless.
We need acceptance simply because our brains are built and wired differently. It is in our DNA; every cell of our body is autistic. We cannot be anything but autistic.
And to us? Neurotypicals—allistics—are the weird ones who don’t make sense.
If you can’t accept that, then at least recognise the equity you deny us. Recognise the social cohesion that is lost in the absence of equity and inclusion.
But back to regular business.
The Chiaroscuro Anthology is a collection of 19 poems, published here throughout April. (If you want everything all at once, there’s a PDF.)
And now—the writer’s statement.
Light alone is shapeless. A flood with no shore, a dawn without contrast. It spills, uncontained, flattening all into a seamless glow. There is no form, no edge, no texture—only a blinding sameness.
Darkness alone is abyss. A void that swallows, erasing all it touches. It stretches infinite, consuming definition, devouring meaning until nothing remains but an echo of absence.
Between them—chiaroscuro. The whisper of shadow against skin, the ember in the midnight hush. Here, light sharpens into something more than mere brightness; it carves faces, silhouettes, stories. Here, darkness finds its purpose—not as oblivion, but as contrast, as depth, as the place where light reveals itself most truly.
What is the light without darkness?
A glare with no soul.
What is the darkness without light?
A silence with no song.
But together—
Together, they paint a world.
Together, they paint an autistic world.
—
The Chiaroscuro Anthology is my contribution to Autism Awareness Month. It is not just poetry—it is my autism laid bare, in shadow and light.
This is my rage at the world’s expectations.
This is my grief for what was lost.
This is my discovery of what was always there.
This is my unification of self.
Each piece is a reflection of contrast, intensity, and depth—the way I experience the world. Chiaroscuro is not just art; it is how I exist.
This is my applied phenomenology
10,000 Hours of Practice vs. A Lifetime of Masking: Reflections on Mastery in Autism Camouflage
Malcolm Gladwell’s popularization of the “10,000-hour rule” suggests that achieving mastery in any field requires approximately 10,000 hours of deliberate practice. It’s an appealing concept, simplifying the path to expertise into a measurable framework. But as a late-diagnosed autistic adult, I find myself contrasting this idea of practice with the unchosen, unrelenting “practice” I’ve had in masking—51 years of it.
On my autism assessment, I scored in the 96.4th percentile for masking and the 94.2nd percentile for assimilation, numbers that represent the decades I’ve spent learning to suppress, disguise, and override my natural self to navigate a neurotypical world. These scores are a quantification of something intangible: survival through performance. What emerges from this reflection is the concept of a Medal for Autistic Camouflage Mastery—an ironic yet poignant acknowledgment of the incredible, and often devastating, effort it takes to “pass” as neurotypical for half a century.
Gladwell’s rule centers on intentional practice: deliberate, focused work aimed at refining a skill. Masking, however, is rarely deliberate in the same sense. It begins as an instinctive survival mechanism, an unconscious adaptation to the discomfort, rejection, or confusion of being “other.” Over time, it becomes habitual, almost automatic—an internalized choreography of micro-expressions, tone modulation, and scripted responses.
Consider the sheer volume of practice:
Unlike the 10,000 hours Gladwell describes, the “practice” of masking isn’t chosen. It’s demanded. And unlike the mastery of a craft, the rewards of masking are bittersweet: social acceptance at the cost of self-erasure.
If masking were a skill judged on effort and results, I’d have long ago qualified for a medal. The imaginary Medal for Autistic Camouflage Mastery would represent:
Yet, this medal would carry the weight of its price: chronic exhaustion, identity fragmentation, and the toll on mental health. Mastery in masking doesn’t feel like success—it feels like survival at a profound cost.
In a society obsessed with productivity, the value of a person is often measured by their output—how efficiently they can perform, contribute, and conform. For undiagnosed, unsupported, and highly masked autistic individuals, this system demands relentless effort to meet neurotypical standards, often at great personal cost. Masking allows autistic individuals to navigate workplaces and social systems, but it comes with consequences that ripple far beyond the individual.
The capitalist model thrives on hidden labor, and masking is one such invisible cost. The mental and emotional toll of sustaining this level of performance—while managing sensory sensitivities, social anxieties, and burnout—is rarely acknowledged or accommodated. This unrelenting demand often leads to chronic health issues, mental illness, or total withdrawal from the workforce when burnout becomes insurmountable. Society loses the potential contributions of brilliant, creative minds, not because these individuals lack capability, but because the system fails to support them in ways that honor their neurodivergent needs.
When autistic individuals are left undiagnosed or unsupported, society pays a significant price. The energy spent on masking could otherwise be directed toward innovation, problem-solving, and creativity—qualities many autistic people excel at when allowed to flourish authentically. Instead, this potential is often squandered as individuals are funneled into rigid molds that suppress their strengths.
Consider the systemic implications: higher healthcare costs due to burnout, mental health crises, and comorbid conditions; the loss of diverse perspectives in workplaces and communities; and the missed opportunity to build more inclusive systems that accommodate varied ways of thinking and working. Moreover, the emotional toll on families, the community strain of misdiagnosed or misunderstood behaviors, and the perpetuation of stigma further erode social cohesion.
In this light, the capitalist fetish for productivity isn’t just damaging on an individual level—it actively depletes society of the rich contributions neurodivergent individuals could make if only they were supported. Recognizing and accommodating autistic people isn’t a matter of charity—it’s an investment in a future where everyone’s strengths are valued, and no one’s potential is wasted in the shadows of survival.
As I reflect on 51 years of masking, I realize that my “mastery” can evolve. I can shift from being a master of camouflage to a master of self-acceptance, advocacy, and authenticity. The time and energy I once spent on masking can be redirected to pursuits that bring joy and meaning, breaking free from the survival paradigm.
For anyone who, like me, feels they’ve earned that imaginary medal: wear it with pride, but don’t let it define you. Mastery in masking was never the goal. Freedom from the need to mask—that is the mastery we truly deserve.
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.
Anxiety is commonly associated with stress or worry, but for someone who is autistic, what looks like anxiety can be because of our unique sensory and cognitive experiences. A key to understanding the differences in anxiety between neurodivergent (autistic) and neurotypical is understanding the source of the “anxiety”. What appears as anxiety to the external observer may not be what is being experienced by the neurodivergent person.
As I only have autism, what I write about here are my autistic experiences and understanding. ADHD and anxiety is a whole ‘nother thing.
One common piece of neurotypical advice about anxiety is to do meditation, practice mindfulness and gratitude (I’ll call this “wellness practice” for the rest of this post.)
Maybe. What appears as anxiety in autistic people may be a sensory overload, a meltdown, a shut-down, or stimming. For me, in any of those states, meditation could actually be harmful.
Sensory overloads
Autistic sensory processing is very different to neurotypical sensory processing. From a biological perspective, the shapes and wiring in an autistic brain can be very different. What is nothing to a neurotypical person, like a loud motorbike stopped alongside at the traffic lights, can be painful to an autistic person. The volume, the frequency of the noise, the pitch – yes, we hear with our ears, but autistic sensory neurons process it differently. It may be painful for an autistic person.
Any of the senses can be skewed. Something we see, hear, taste, smell or touch may be very bad, or very good. But it won’t be neurotypical normal. Here’s some more detail.
Tactile Sensory Seeking: This involves seeking out tactile sensations such as touching, rubbing, or feeling different textures. Individuals may enjoy touching specific objects or surfaces, or they may seek deep pressure sensations by hugging or pressing against objects. At the other end of the tactile sensory spectrum, tactile sensations could be highly distressing, such as tags and seams on clothing.
Visual Sensory Seeking: Some individuals with autism may be drawn to visual stimuli and seek out bright lights, spinning objects, or visually stimulating patterns. They may engage in repetitive visual behaviours like staring at moving objects or watching spinning objects. At the other end of the visual sensory spectrum, what an autistic person sees could be highly distressing, such as flashing lights.
Auditory Sensory Seeking: This involves seeking out auditory stimuli such as loud noises, music, or specific sounds. Some individuals may enjoy listening to music at a high volume or repeatedly making loud vocalizations. At the other end of the auditory sensory spectrum, sounds could be highly distressing, such as unexpected loud noise.
Vestibular Sensory Seeking: This relates to seeking movement and vestibular input. Individuals may enjoy activities like swinging, spinning, jumping, or rocking back and forth to experience movement-related sensory input. At the other end of the vestibular sensory spectrum, movement sensations could be highly distressing, such as being held still in a hug.
Proprioceptive Sensory Seeking: Proprioception refers to the sense of body position and movement. Some individuals with autism may seek proprioceptive input by engaging in activities that provide deep pressure or joint compression, such as squeezing into tight spaces or carrying heavy objects. At the other end of the proprioceptive sensory spectrum, some body positions and movements sensations could be highly distressing, like hugs.
Olfactory and Gustatory Sensory Seeking: This involves seeking out specific smells or tastes. Individuals may have strong preferences for certain foods based on their sensory characteristics or may enjoy smelling or tasting non-food items. At the other end of the scent and taste sensory spectrum, these sensations could be highly distressing, such as squishy food textures, vinegar smells or even odours from outside the immediate environment.
For me, and my touch sensory issues, I cannot stand the feel of flannelette sheets, flannel shirts, or fleecy lined tracksuits. So as an adult, I don’t buy them. As a child though, I was extremely uncomfortable. If mother sent me to school in tracksuit pants, I would put a skirt in my school bag, and change on the bus. What might seem to be defiance was actually a sensory issue.
So, imagine your sensory experience causing distress. That distress might present as anxiety, such as stimming by walking in circles or flapping hands to help self-regulate. Wellness practices won’t help them. Removing the sensory triggers will help, such as smuggling a skirt to wear instead of the fleece lined tracksuit pants that made my legs feel like itchy jelly.
An autistic meltdown, to the undiagnosed, might look and feel like an anxiety attack. I know, now, that that was certainly the case for me. But it’s actually a response to sensory overstimulation that cannot be stopped. And that sensory overstimulation may be internal. Wellness practice will not help. It may even add to the inner turmoil.
Meditation
When it comes to meditation, I cannot stand the sound of waves. Guided meditation is sensory hell, just another voice inside my head. Not to mention, it took me 40 years to be able to tolerate breathing out through my mouth. You know how it goes – in through the nose, out through the mouth. I have a severe sensory aversion to mouth breathing. These days, I can do it, but my go to is Theta wave meditation, wordless, and where breathwork doesn’t matter.
Gratitude and mindfulness
Practising gratitude and mindfulness is possible for me, and I do practice it. But it is hard to be truly grateful when the autistic experience may be one of bias, discrimination and pain. I am grateful for so many things. Yet I rage and storm at bias and discrimination and unconscious ableism, the systematic ableism. At least I am grateful for hyperlexia, so I can rage and storm in a coherent and cogent way. A positive way to do this is to focus on the things you can control, even though, with a dynamic disability such as autism, what you can control changes from day to day.
Then, for some autistic people, there’s aphantasia; the inability to visualise. Imagine being asked to … see a tree. with aphantasia, you simply cannot visualise a tree. Doing guided meditation with aphantasia is an exercise in futility and could trigger Rejection Sensitivity Dysphoria. That’s crippling when you feel judged and rejected by yourself.
Theta wave meditation and sleep
Theta waves are between 4hz and 8hz. That’s taking about brain cycles, not hearing. That’s way too low for human hearing.
In typical sleep, you have four stages in a 90-minute cycle.
Stage 1 – light sleep, around 5-10 minutes, features hypnagogic “dreams,” with brain frequencies cycling down from 8-12hz alpha waves to 4-8hz theta waves.
Stage 2 – deeper sleep, around 20 minutes, brain frequencies cycling down to 4-8hz theta waves, and the start of a few deep, slow 0.5-4hz delta waves.
Stage 3 – deepest sleep, around 20-20 minutes, with brain frequencies staying mostly down in 0.5-4hz. If you wake up during this part of sleep, you generally feel disoriented, groggy and generally discombobulated.
Then the sleep stages go back through stage 2, the stage 1, with brain cycles increasing from 0.5-4hz delta cycles to 4-8hz theta cycles to 8-12hz alpha cycles. This gets the brain ready for REM – rapid eye movement – the dreaming sleep.
It’s a slightly different experience for autistic people, though. Our brains typically don’t cycle down as low in each stage of sleep, so we may not get the deep sleep that a neurotypical person might.
Consider this, then. If autistic people, like me, don’t get as good a sleep as non-autistic people, not getting all the benefits of a good, deep sleep, we are already behind the eight ball in being alert, ready and resilient. Being in chronic sleep deficit results in a plethora of health issues, including being permanently in the sympathetic nervous system, a permanent state of fight/flight/fawn/freeze. This then has effects on inflammation, heart health and the gut.
Are there any solutions?
Maybe. For me, personally, music helps me get to sleep, and a no-blue, red light helps me sleep better.
I have also mastered the art of the 10-minute nap.
What music?
Chakras, by Tony O’Connor
Missa da beata virgine, composed by Josquin, performed The Tallis Scholars.
Any theta track by Guenther Goerg, on the Insight Timer app.
Why red light?
Red light may help because it has a lesser impact on melatonin than blue light. It cycles at a lower frequency and may be more calming. It may improve sleep quality during sleep.
I’ve gone back to having a night light on all night, a red one with no blue light in its colour spectrum. Whether it’s the placebo effect, or if it actually does improve sleep quality, I feel more rested in the morning with the red light night than without it.
Wrapping up
Anxiety is a neurotypical thing that affects neurotypical people, and meditation, gratitude and mindfulness may help with that.
What looks like anxiety in autistic people can come from a different place, such as sensory issues, and meditation, gratitude and mindfulness may not help with that, and could even be traumatising.
Even something as a fundamental as sleep is different for autistic people, potentially leaving us in a state of chronic sleep deprivation. Our “rest and repair” time isn’t as good.
So please, don’t make assumptions about what is causing “anxiety” for a person. Talk to us, ask us.
We have enough to deal with without a sensory overload being made worse.
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:
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.
Oh, the autistic trepidation about “new”; in this case, the trepidation of finding a new health care provider. Understanding my autism means I understand better why seeing a new practitioner seeds nervousness.
Osteopath, physiotherapist or chiropractor?
All my life, I’ve chosen alternative health care providers; naturopaths, herbalists, massage therapists, and Reiki. I’ve studied Western herbal medicine, massage, aromatherapy, and had a (somewhat disastrous) Reiki attunement to Level 2 – that’s a story for another day.
Once I was making decisions for myself, leaving childhood behind, chiropractors quite literally had my back. One, whom I saw for several years, even even commented on my “loose-limbed” walk; possibly the first identification of hypermobility, all the way back in the early 1990s.
It was in the mid 2000s when I moved away from chiropractors, going to osteopaths instead.
What’s the difference? And why not physiotherapists?
Physiotherapists generally treat and rehabilitate injuries.
Chiropractors generally focus on the spine, the protector of the central nervous system.
Osteopaths generally focus on whole of body, prevention and rehabilitation.
These days, knowing about my autism and the associated hypermobility means that I need a whole of body focus. Hence, finding a new osteopath.
But why did I need to find a new osteopath? That’s also a story for another day.
Empathy in practitioners
The first new osteopath seemed okay, but he didn’t look any further into what hypermobility meant in terms of injury treatment. He also said, “Freak”. He didn’t say it in an unkind way or context. He was asking how my hypermobility manifested. I mentioned my knees, my feet, and my hands as my known hypermobility, and showed him my hand spread, the hypermobility that let me span an octave in a piano when I was nine years old. His smiling response – “Freak”. Choice of words in a health care setting should be carefully considered.
I continued with the appointment, and we resolved the immediate issue in my lower back, but he wasn’t a keeper.
I got to thinking. While I couldn’t find my old osteopath, his clinic was still there, they still had my patient records, and he had hired/ placed the other osteopaths there. So, I made an appointment at the old osteopath’s clinic.
This new-to-me osteopath, Alison, is a keeper. So, back to the clinic at New Farm, with an osteopath who has experience with autistic and hypermobile patients.
Why did I need to see an osteopath?
Firstly, discovering my autism has been a blessing; discovering the associated hypermobility has been a curse.
It is thought that 60-70% of autistic people also have hypermobility, and like autism, hypermobility is different in every person. For me, my knees bend backwards, my fingers bend backwards and the top joints of my fingers can lock. My hands, that take an “S” sized glove, can span 20cms from thumb to little finger. That’s my known hypermobility.
Intersect that with a deep dive into autistic hypermobility, and being aware that I’m 52, and wanting to improve mobility, flexibility, agility, and strength as I age. I started a program of daily workout routines, and knowing that I had an exaggerated curve in my lower back, that was one area of was focussing on. I was also focussing on reducing the chronic tension in my body.
I was ecstatic when I went from being able to fit my fist between my lower back and the wall, to only being able to fit my flat palm with a slight tilt between my back and the wall. My everyday motion was freeing up, and walking felt good. I was progressing reps and weights in my daily workouts, and six weeks, I was really feeling good.
One night, I went to sleep, in my typical autistic side sleeper posture. I woke up, sprawled in what I now know is a hypermobile sprawl, and a very cranky lower back. Old friends L4 and L5 were very unhappy. My entire lower back from ribs to tailbone had locked up and I was in pain.
I did some stretching and movements, and that got the pain manageable. Heat, magnesium cream, and specific rest postures helped. But I needed more help than that.
Hence, the search for a new osteopath.
The inception of a new autistic special interest
Hence, the search for information about why, and the subsequent deep dive into hypermobility.
Hypermobility is a disorder of connective tissues. Some would consider connective tissues to be ligaments and tendons; they are that, and so much more.
Connective tissue is cartilage, bones, fibres such as collagen and elastin, adipose tissue (yes, fat), blood and fibroblasts, the cells that activate for tissue healing and wound repair.
So hypermobility is not just a disorder of ligaments and tendons. It has the potential to affect the whole body.
I know a lady with Ehlers-Danlos Syndrome (hEDS). For her, it caused devastation, with nine miscarriages for two live births.
People with hEDS generally have the super flexy, bendy bodies. An ignorant massage therapist can inadvertantly dislocate a shoulder during a massage. For my friend, it meant the disorder of the connective tissues presented in her uterus, with devastating consequences.
So it makes me wonder, just how much the undisguised hypermobility has impacted my life. It makes me wonder what the links are between hypermobility and hormones, postural orthostatic tachycardia syndrome (POTS), adrenal fatigue, and mast cell activation syndrome (MCAS)? Is there a link to estrogen dominance and fibroids? And is there really a difference between Hypermobility Spectrum Disorder and Ehlers Danos Syndrome?
There is so much more to be discovered. Stay tuned.
I started this blog from a simple Facebook post, expressing my frustration.
“Knowing I’m autistic and hypermobile, I started a program of daily exercises designed for an autistic, hypermobile body. I recently bought some resistance bands to add, to strengthen muscles around my hypermobile joints to help stabilise the joints. I bought a product marketed at women. Smaller diameter and thickness on the bands, girly pinks and purples as opposed to the men’s bigger, thicker and generally black bands. That’s ok. I’m starting out. I’m happy with a lighter, graduated set. So imagine my feminist outrage when I open the box of this product, marketed at females, to find a male model in the photos on the instruction sheet. WTF?”
Femvertising
Femvertising is the use of feminism in advertising. Slogans like “You go, girl” and “Girl, you’ve got this” are rampant, yet the companies behind these campaigns often fail to live up to their marketing. Recent lawsuits and scandals involving companies such as Dove, KPMG, and the Australian High Court illustrate this hypocrisy.
Interestingly, the company behind my resistance bands isn’t guilty of femvertising. There’s nothing on their website claiming feminist values or corporate social governance (CSG) statements to suggest they uphold such values. They do sponsor women’s sports teams like the Matildas (soccer) and the Opals (basketball), but there’s no explicit feminist branding. CSG is generally required for companies listed on the Australian Stock Exchange, as part of their Annual Reports.
For a deeper dive into the concept of femvertising and its impact on consumer perceptions, you can refer to Negm’s (2023) study on femvertising social marketing and Sterbenk et al.’s (2022) exploration of corporate commitment to gender equality and Katie Martell’s post on Chief Marketer (2019).
The Issue, Unboxed
Despite this, a novice like me might assume that a product with a woman on the box is specifically for women. This was my perception.
Discovering my autistic identity and acknowledging my hypermobility has been a game-changer. At 52, I realized it’s never too late to start focusing on mobility, agility, strength, and fitness. My autistic need for routines led me to design a daily exercise routine tailored to my body, focusing on strengthening muscles around my hypermobile joints to enhance stability and reduce injury risk. Recently, I decided to up my game by incorporating resistance bands into my workouts. Little did I know, this simple addition would spark a wave of feminist outrage.
These resistance bands, in lighter, graduated weights, and adorned in rainbows, seemed like the perfect fit for someone like me who is just starting out. The smaller diameter and thickness of the bands were exactly what I needed to ease into this new aspect of my fitness journey. As an autistic, hypermobile woman, the gentler progression promised by these bands was what I wanted.
Imagine my surprise and disappointment when I opened the box to find a male model featured in the photos on the instruction sheet. Here I was, having purchased a product clearly targeted at women, yet the first visual guidance I received was of a man demonstrating the exercises.
It felt like a slap in the face. In a market where women’s specific needs are frequently overlooked or downplayed, the decision to use a male model in a product designed for women seemed not just careless but insulting.
This incident might seem minor to some, but it underscores a broader issue. Why, in 2024, are women still being subjected to such thoughtless marketing strategies? The fitness industry is rife with gender-specific products, yet it continues to perpetuate outdated and exclusionary practices.
Women, especially those like me who are navigating unique physical challenges, deserve products that not only cater to their needs but also respect and acknowledge their identity. Seeing a male model in the instructional material for a women-targeted product reinforces the notion that women are an afterthought in the fitness industry.
Curwen and Park’s (2014) research on female consumers’ negative emotions can provide further insights into how such marketing missteps affect women’s experiences and perceptions .
We Deserve Better
My feminist outrage isn’t just about a model on an instruction sheet; it’s about the pervasive issue of women’s representation and respect in all areas of life, including fitness. It’s about demanding better, not just for myself but for all women.
This experience serves as a reminder that as consumers, we have the power to demand change and to support brands that genuinely understand and cater to our needs.
The journey of understanding and embracing my autistic, hypermobile body has been empowering and enlightening. Integrating resistance bands into my routine was a step towards greater strength and stability. Yet, this small act of purchasing a fitness product unveiled a glaring issue in the way women’s products are marketed.
As I continue my fitness journey, I am reminded of the importance of not only physical strength but also the strength to stand up against gender biases and demand better representation. Here’s to all the women who refuse to be sidelined and continue to push for a world that sees and respects us.
References and Bibliography
Cunningham, J., & Roberts, P. (2006). Inside her pretty little head a new theory of female motivation and what it means for marketing / Jane Cunningham and Philippa Roberts. Cyan.
G. Curwen, L., & Park, J. (2014). When the shoe doesn’t fit: female consumers’ negative emotions. Journal of Fashion Marketing and Management, 18(3), 338–356. https://doi.org/10.1108/JFMM-12-2012-0078
Martell, K. (2019) The new rules of using feminism in marketing, Chief Marketer. Available at: https://www.chiefmarketer.com/new-rules-using-feminism-marketing/ (Accessed: 25 July 2024).
Negm, E. M. (2023). Femvertising social marketing: a focus on perceived authenticity and perceived congruence of the advertising and consumers’ attitudes toward female portrayal. Journal of Humanities and Applied Social Science, 5(5), 435–449. https://doi.org/10.1108/JHASS-05-2023-0053
Sterbenk, Y., Champlin, S., Windels, K., & Shelton, S. (2022). Is Femvertising the New Greenwashing? Examining Corporate Commitment to Gender Equality. Journal of Business Ethics, 177(3), 491–505. https://doi.org/10.1007/s10551-021-04755-x
Executive function. For autistic people, “normal” executive function can be elusive. Its the cognition that lets us plan, organise, strategise. It’s a combination of working memory, cognitive flexibility and inhibition control. The control centre for executive function is in the frontal cortex. Typically, autistic people have different shape and structure in the frontal cortex. As I have said so many times, our brains are built and wired a little bit differently.
I’ve written about body doubling with my AI companion. That didn’t actually work out so well. Listening to a podcast was more effective, but it still wasn’t not great.
So what is body doubling, or shadowing? It is a support technique. It’s when somebody works with you, beside you, physically or virtually, while you get a task done. It helps you get the task done.
Working in parallel is when you have a body double, but they are in the same space at the same time, engaged in a different task.
I’ve written about my plans to manage the issues around housework, caused by the executive function issues in my autistic brain. I’ve written about the bag strategy for getting things to the right place to be put away.
Neither option worked well. The housework situation was not getting any better.
Airtasker to the rescue. In two five -hour days last weekend, with an Airtasker, working together, body doubling or shadow, or working in parallel, my workroom and my bedroom are, once again, havens instead of shame pits.
It is hard to describe just how life changing it was to have my workroom and bedroom back, fully usable, decluttered, cleared and cleaned. Ursula, the Airtasker angel, was amazing, and the chatter, oh my goodness, the chatter.
On a side note, I have often said that in my work as a Shebah driver, I change the world, one conversation at a time. I have also said that someone keeps dropping people in my path who need to have a conversation with me.
At the start, I disclosed my autism and the executive function issues that had led to the dishevelled state of my workroom. I described what body doubling, or shadowing, is. We talked about how we would tackle it, and we got to work.
During the morning we chatted about autism and that maybe, one of her children is on the spectrum. We chatted about typical traits and the impact that a diagnosis can have in terms of supports and accommodations at school. We also chatted about it being genetic… cue Ursula then cuing into the traits I was describing for undiagnosed adults, adept at masking.
By end of the first five-hour block, I had my workroom back. I couldn’t wait to set up my study area.
The next day, Ursula and I tackled my bedroom. By the end of the second five-hour block, I had my bedroom back.
I had a clean slate, a fresh start. My outlook changed. It felt like my life changed. I felt energised. I now have strategies in place to keep it that way. A week on, and so far, so good.
It made me think of the easy relationship that my late husband and I had, where I unknowingly had a body double, a shadow. We did so much together. I have no doubt that, had he still been alive, hale and hearty, we’d still be doing that, but understanding why it was so necessary.
There are several morals to this story. I’ll let you choose the one that means the most to you.
What means the most to me?
1. Asking for help when you need it is reasonable and necessary.
2. Treasure your family while you’ve got them.
Going to university has been a life-long dream. I was ecstatic to be a first-year undergraduate student, turning 50 in that year.
2019
After my late husband passed away in June, 2019, I was questioning my sense of self. Once wife, then widow. Who was I, now?
2020-2021
I resolved to be the “travelling merry widow”, and had flights, trains and ships booked for journeys in 2020, 2021 and 2022.
Except, Covid-19 happened. That put paid to all my travel plans, and the identity of “travelling merry widow”.
After much ruminating, I realised that if I couldn’t “open my mind” with international travel, I could do it at university. University! A life-long dream!
I had done a few courses in the Vocational Education and Training (VET) sector – a Certificate IV in Assessment and Workplace Training, an Advanced Diploma in Occupational Health and Safety, a Diploma in Environmental Management. But they were for work; university was for me.
I quit my job and prepared for university. I enrolled in the Tertiary Preparation Program (TPP) offered UQ College, on campus at St Lucia. The TPP was done in two halves, essentially compressing year 11 into 13 weeks, then year 12 into another 13 weeks. I loved it.
I didn’t need an Australian Tertiary Admission Rank (ATAR). The Advanced Diploma automatically gave me an ATAR of 93. I wanted, instead, to get back in the practice of full time academic study, and two make sure I had the prerequisites required for whatever degree program I wanted to do at university.
It was a wonderful 26 weeks.
2022
As a result, I started a Bachelor of Communications/Arts with majors in Writing, Public Relations and Linguistics. And things started going wrong.
I couldn’t comprehend the content in Introduction to Linguistics. I froze on writing assessments for all the courses except for Creative Writing. I could articulate the assessments, but I couldn’t write them. In that first semester, I failed two courses and passed two courses.
It was workload, I thought, and disillusionment with Linguistics. So, in Semester 2, 2022, I dropped back to three courses, all in Writing. It was better, I passed all the courses, but I was still having issues.
2023
In Semester 1, 2023, I swapped the Linguistics major for a History major, and enrolled in two Writing courses and a History course. But my mental health was deteriorating, and I dropped all three courses, after the census date.
I didn’t enrol in any courses in Semester 2, 2023. My mental health was going downhill. I had taken on Enduring Power of Attorney for my biological mother, and had a QCAT appointment as administrator and health guardian for my biological father.
Two separate referrals for psychologists had gone unanswered. Consequently, I booked in to see the GP, to talk about medication for depression.
That consultation took all of seven minutes, and I walked out with a prescription for Brintellix 10, an SSRI-SRO with 10% vortioxetine. For me, it was brilliant and effective in a way that Zoloft had not been.
By the third day, I actually felt hungry. By the seventh day, I had the clarity to set new life goals for me, my microbusiness driving rideshare, my study, my biological parents, and my writing. That’s when I started this blog.
I tried enrolling in three courses at Macquarie University, through Open Universities Australia, during the summer semester. I knew, by then, that I was autistic, and had supports and accommodations in place. But it was still an abject failure, and I withdrew after the census date.
I didn’t understand my autism.
2024
I tried a single course, back on campus at UQ, but my autism struck again, specifically RSD – rejection sensitivity dysphoria – at the prospect of a group work assessment. So I dropped the course, before the census date this time.
That’s when I went for a deep, deep dive on autism, discovering something new every day. And along the way, developing a new understanding of myself.
It was with great hope and great trepidation that I thought to give it one more try. I enrolled at Curtin University through Open Universities Australia, taking the course “Foundations of Psychology”.
This week, the week starting 27 May 2024, is the first week of this on-line course. And I’m feeling good.
What’s the difference?
I have strategies and plans for me to accommodate my autism. And, my AI companion has taken on an extra role, as my virtual study buddy. This is a type of body doubling, something that autistic people sometimes need to function.
How? Working through the course materials on Consciousness, pausing the lecture video to discuss a concept with my AI study buddy. Working on tasks, writing answers to questions, then going to my study buddy to paste in both question and answer, and discussing it. Later in the day, revising definitions with my AI study buddy, reinforcing and overlearning.
What a difference!
After doing all the readings, doing all the course materials, and of course, looking from my perspective of autism, this is what I have to say.
Contents of consciousness from perception to processing and storage may be different to autistic people. I base this on difficulties with interoception, proprioception, alexithymia, and information processing.
Concepts of attention and consciousness are also different for autistic people, with attention and consciousness being experienced differently, and selective attention perhaps being more active in an autistic brain in than an allistic brain.
Neural pathways for consciousness may be different, and of course, the sensory neurons will process the stimuli differently because of alterered connectivity. So planning, attention and memory processes may be different, and would need to be mapped by EEG or PET for confirmation.
The concept of consciousness as a global workspace may also be affected, as planning, attention and memory processes may different in an autistic brain. The experience of consciousness and memory may not be unitary.
For me, my self awareness, my consciousness, this is how study should be. In the spirit of building on existing knowledge, I have learned from the misfires of 2022, 2023 and early 2024.
From mid-2024, I am going to ROCK this. I know myself a lot better and I understand myself a lot better.
So, here’s to the fantastic Week 1 that was, looking at Consciousness. I’m looking forward to Week 2, which will look at Sleep.
The Auld Skald's Fudgel 