hypermobility – The Auld Skald's Fudgel

🕯️ A Note Before the Next Poem

Science by ChatGPT. Emotions by me.

This isn’t a poem. It’s a rupture.
A palate cleanser between verses, with another poem; one not part of the Chiaroscuro Anthology, but one born of topical rage.
A reckoning that interrupts the flow.

On 5 April, I turn 53.
According to the statistics, I shouldn’t expect to live much longer.
This post is for every autistic woman who was erased by research, sidelined by medicine, or written out of longevity science entirely.

It’s not pretty. But it’s mine. And it is the reason the poems exist.

Literature Review: Life Expectancy in Autistic Women by Support Level

Despite increasing awareness of autism across the lifespan, autistic women remain dramatically underrepresented in mortality research, especially when it comes to parsing outcomes by support level (Level 1 vs Level 3).

Key Study: DaWalt et al. (2019)

DaWalt and colleagues tracked 406 individuals with autism over 20 years. They found:

6.4% died during the study.
Average age of death: 39 years.
Primary causes of death: cancer, heart disease, accidents, medication complications.
Strong predictors: low early social reciprocity, poor daily living skills.

This aligns with Hirvikoski et al. (2016):

Average life expectancy in autism: 54 years.
With intellectual disability: 40 years.
Suicide prominent, especially in higher-functioning autistic adults.

Other studies (Croen et al., Nicolaidis et al., Mouridsen et al.) reinforce:

Poor healthcare access.
High comorbidities.
Elevated all-cause mortality.

Autistic Women: Still Largely Ignored

Late diagnosis → prolonged trauma exposure.
Higher suicidality (Hull et al., 2020).
More likely to mask, burnout, be misdiagnosed.
Hormonal & autoimmune issues often overlooked.

Estimated Life Expectancy

Group	Estimated Lifespan
Level 3 Autistic Women	40–53 years
Level 1 Autistic Women	60s–70s
General AU Women	~83 years

Diagnostic History: Erased, Delayed, or Denied

Benchmarking Temple Grandin

Diagnosed in the 1950s at age 3—seven years after Kanner’s paper. Language-delayed. Visible. White. Middle-class. Rare.

Most women since:

Misdiagnosed: anxiety, BPD, depression.
Pathologised: controlling, dramatic, manipulative.
Dismissed: too smart, too intense, too sensitive.

Autism in DSM-III (1980), revised in DSM-IV (1994)—still male-centric. DSM-5 (2013): First real acknowledgment of a spectrum.

Impact:

Late diagnosis = prolonged harm.
No data = no funding.
No funding = no interventions.

What isn’t counted, doesn’t live as long.

David Sinclair and the Neurotypical Fantasy of Longevity

His Research

Sirtuins and resveratrol: longevity genes, debated effects.
NAD+ metabolism: energy, aging, DNA repair.
Epigenetic reprogramming: Yamanaka factors in mice, potential age reversal.

What’s Missing?

Neurodivergent people. Disabled bodies. Trauma physiology. Sensory systems.

He writes about longevity like everyone has the same nervous system. We don’t.

Blistering Insight: The Deadly Consequences of Exclusion

Meditation and RSD

“Close your eyes. Breathe deeply.” For autistic people with Rejection Sensitive Dysphoria (RSD), silence is where shame howls. Guided visualisation? Not with aphantasia. Mouth breathing? Sensory hell.

ARFID and Food “Rules”

Processed food = safety. Predictable texture. Tolerable taste. Forcing whole foods can induce panic, vomiting, shutdown. Feeding tubes? Sensory nightmare. Malnutrition? Real, deadly, unmeasured.

Exercise and Hypermobility

Generic “movement is medicine” ignores Hypermobility Spectrum Disorders (HSD). Injury risk, fatigue, overstretching—worsen outcomes if poorly understood.

Stress, Shutdown, Burnout

Autistic burnout: neurological, not just emotional.
Shutdown = disconnection, immobility, medical avoidance.
Stress leads to inflammation → telomere shortening → early death.

Citations: Hull et al. (2020), Autistica UK, multiple lived experience reports.

This is life-threatening omission masquerading as wellness.

The Human Cost

RSD and Ideation

Workplace fear wasn’t abstract. One mistake meant:

Job loss.
No income.
Loss of housing.
Loss of care home for my husband.

Indexed life insurance. No suicide clause. $820k. Twice, unmanaged RSD brought me to ideation.

ARFID, Egg Whites, and Medical Trauma

Childhood: forced to eat egg whites. Backyard chickens. No escape. The trauma never left. I survived by becoming selective. Strict. Safe.

Talk Therapy as Adult ABA

“Reframe that.” “Breathe.” “Visualise peace.”

Mouth breathing = distress.
Silence = RSD.
Imagery = impossible with aphantasia.

Healing shouldn’t mean pretending to be neurotypical.

What Gets Left Out of the Longevity Conversation: Me

I’ve never done an annual check-up. Never had a pap smear or bowel screen. Never been hospitalised.

Why? Because I was never safe. Because no one knew I was autistic. Because every medical touchpoint reinforced trauma.

I live. I breathe. I do my best. And I am still here.

I Am Here: Redefining Longevity on My Own Terms

Not cold plunges. Not biohacking. Just this:

Sunday meal prep
Nesting tasks
Managing my nervous system
Rebuilding trust with my own body

Supplements and Supports

NAC
Curcumin BC95
Ginseng
Magnesium glycinate, threonate
Vitamin C
Nutritional yeast
Herbal liver and kidney support

HSD Awareness

HSD-aware osteopath
Movement adaptations
No more shame for “clumsiness”

Spitting in the Eye of Your Statistics

I am 53 this year. I am Level 1. My life expectancy? 67. The age I can access my super. How convenient.

Your stats say I won’t be here. So let me say it back:

I defy your statistics. I spit in their eye.

Lies, Lies and Damned Statistics: Lies of Longevity

By Lee-Anne Ford

Statistics. Lies, lies and statistics.
Damned statistics, they say.
Probabilities. Calculations.
Actuarial triumph in play.

Welcome to my life after death—
Actuarial calculations demand.
Welcome to my outrageous breath.
Statistics, my end, command.

Australian woman: expect average.
Life expectancy of eighty-three.
For near fifty years, I expected
Retirement plus fifteen, plus three.

But when love becomes anticipated grief—
Not the romantic, love born of chivalry,
But the love of caring, feared destitution,
Fated phone calls: will it this one be?

Sixteen years of what-if, how, when,
Acting typical when not—ASD unknown.
Do this, try that, be like, kowtow now,
When the ultimate curveball is thrown.

Widowed. Free. Long years and tears ahead—
The most stressful event in existence.
But when I say it like this, you hear that:
Not normal. Not like. Deviation resistance.

Expectancy—now it’s sixty-seven.
Tell me, please, what can I do?
Longevity tricks don’t work for me.
That’s every trick, not just a few.

Betrayed by society, research, and genes.
Autism: disordered, deviation from norm.
Some must wonder, crying, “Why?”
Why have you made me this reviled form?

Then woman. Women. Not little men—
But erased once, and now erased again.
Misogyny. Harassment. Abuse. That’s life.
Some want us invisible again. Their shame.

So: statistics. Lies². Damned statistics.
Actuarial calculations adjusted.
Autistic life expectancy: sixty-seven.
And wife of HD—twelve years, rusted.

Actuarial calculations complete.
Scratching heads. Flummoxed me.
Average expectancy now: fifty-five.
Yet this year, I turn fifty-three.

Not a case of thirty years to go.
But two. Just two. It’s clear.
My female actuarial value?
They say I won’t be here.

So: autistic rage and defiance.
I defy your actuarial rhyme.
I AM HERE. Changing the world—
One conversation at a time.

In the margins: naturopaths. Western herbal medicine. Reiki. Hot stone massage. They didn’t save my life. They helped me stay.

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.

Category: hypermobility

They Say I Shouldn’t Be Here: Redefining Longevity on My Own Terms