Tag: RSD

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

🕯️ 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

GroupEstimated Lifespan
Level 3 Autistic Women40–53 years
Level 1 Autistic Women60s–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.

Autism in the workplace

Trigger warning – mention of suicidal ideation

Read with caution, and rest assured, the events described were back in 2011 and 2018. I’m ok. I really am OK. Cash poor but spiritually rich, and OK

For all of my 31 years in the paid workforce, I had no idea I had no idea I was autistic. I had no idea that my sensitivity to sound was an autistic sensory issue. I had no idea that rejection sensitivity disorder had me in its grip, making me fragile, or as one person put it, “you can dish it, but you can’t take it”. Did I mention that autistic people sometimes have communication issues, and that’s its not constant?

In my last 11 years, as a senior manager dealing with occupational health and safety,  environmental management, quality assurance and corporate governance, I had no idea I was autistic.

How might my professional life have been different, if I had known I was autistic? Could supports and accommodations have been put in place?

That’s really hard to say, or imagine. Not much was known about autism, and it was believed that Aspergers was a different disorder.

But in my last professional role, things were showing, even though I was undiagnosed. Looking back, with hindsight and new knowledge, I can see my autism peeking through my carefully constructed facade.

The challenges – RSD

Rejection sensitivity dysphoria (RSD) made professional life, well, interesting. Going through recruitment processes and not being offered a role. Once in a role, 1 month, 3 month and 5 month probation reviews. Then the annual performance appraisal process. All those little points upon which anxiety and RSD can bloom. And if I felt something was unjust, my strong sense of justice directed my words.

But RSD, from two separate instances at work, I now know to be the origin to be the origin of the two suicidal ideation episodes in my life.

The first one, feeling unwanted, that my work was tolerated but really unnecessary, set off the RSD in a spiral that only hyperempathy saved me from. What would it do to co-workers, driving back from the same meeting I had left earlier, if they saw my distinctive car wrapped around a bridge pylon. That was what stopped me. Hyperempathy. My autistic traits saved my life.

The second time was being given what I thought was a direction but was not, at least, not a direction for immediate implementation. So I forged ahead, made mistakes and the ensuing conversation about that set the RSD off and running again, all the way to suicidal ideation by way of a home-made toxic substance. Reiki, and a skilled, talented and generally all round wonderful Reiki healer, caught that one and opened doorways for me that I could give voice to my distress. That time, I ended up on Zoloft, and it was awful.

The Challenges – sensory

Then we can talk about sensory issues. With my audio sensitivities, having my own music playing was essential. So I became the DJ for the office. But the uninvited noise from an open plan office was, shall we say, uncomfortable. Several times I asked about moving into an empty office, and was refused. Several times, I would be walking back into the office to be met with what sounded like a wall of sound, with people on the phone, conversations, office machines… but all I would do was take a deep breath and continue walking through to my desk in the open plan office.

When I did get an office, sharing with my off-sider, the peace and silence was magnificent yet almost unnerving. The server room next door provided white noise, that I didn’t know I needed, but now makes sense.

That’s not anxiety, that’s an autistic meltdown

Then there was the offsite company meeting in the function room in a hotel, where lunch was in the hotel bistro. I walked into the bistro, then walked out again. I called it an anxiety attack, but now I know it was an autistic meltdown, a meltdown from the noise I walked into, but also RSD from not seeing a reserved seat for me.

But wait, there’s more

All the while,  during this period, I had a husband in the mid to end stages of Huntington’s Disease. Small wonder I went down with hypothyroidism from the chronic stress and also with oestrogen dominance, resulting in fibroids. Too much testosterone, my parasympathetic nervous system overloaded and operating from the sympathetic nervous system, in constant fight or flight. And with undiagnosed autism.

From my experience in risk management and risk mitigation, how then could diagnosed autism, and appropriate accommodations, made a difference?

If my manager and the next manager above that had known about RSD, what would have changed in terms of performance appraisals and performance management?

If my manager had known that my auditory sensitivities were actually austic auditory sensitivities, would the office have been offered sooner?

If my manager had known of my need for clear communication, instructions and directions, what would have changed?

And yet, my autism made me good at my job, at inspections, audits and investigations. Checklists, forms, guidance on inspections. Audit consultations, completion and reports. Emergency management and communications, problem solving, troubleshooting, then reviewing how we had done. My attention to detail, my planning, almost to a project management level of detail; my autistic traits made me good at my job.

That was then, this is now

These days, self-employed as a rideshare driver, I control my workplace. Temperature, noise, what’s playing on the radio, or Spotify. Which booking requests I accept. And seeing so many regulars, the same people, day by day, week by week, establishing relationships with my regulars. My workspace, tailored for me. And every day I have my itinerary.

Autism in the workplace, Amaze Australia

In 2018, Amaze Australia conducted research into community attitudes & and behaviours towards autism.

https://www.amaze.org.au/creating-change/research/employment/.

This is what they found, that:

  • The unemployment rate for autistic people is 31.6% – three times the rate of people with a disability and almost six times the rate of people without a disability.
  • 45% of autistic people who are employed report that their skills are higher than required to do their job.
  • 20% of people report having lost their job because of their autism.
  • More than half of autistic people who had held a paid job have been out of employment for three or more years

That’s an awful lot of wasted talent. How could your workplace be more inclusive?

The Forde Inquiry and the forgotten, adoption and genetic inheritance

(or, how I got to be me)

This is the story of my biological parents and my genetic inheritance. First, though, some background on “the forgotten” – those who were thrown into orphanages and detention centres and… forgotten – including my biological parents.

In June 1999, the report of the Commission of Inquiry into Abuse of Children in Queensland Institutions was tabled in the Queensland Parliament.

It covered the period from 1911 to 1999, examining records from more than 150 orphanages and detention centres, and evidence given by more than 300 people. The Commission of Inquiry found significant evidence of abuse and neglect of children in the past. (https://fordefoundation.org.au/resources/the-forde-inquiry/)

What was not investigated, because it was not in the terms of reference of the Forde Inquiry, was the forgotten who were put into psychiatric wards because of their behaviour.

Imagine this. In 1971, in a psychiatric hospital in southern Queensland, two patients in their 20s met, fell in love, pledged themselves to each other, and conceived a child. Once her pregnancy was discovered by hospital staff, he was transferred to another facility, the Challinor Centre, in south-east Queensland, while she remained in the same psychiatric hospital, Bailey Henderson, alone, having had her love ripped away from her. Her pregnancy developed, and on 5 April, 1972, she gave birth to baby girl.

Within two weeks, that infant had been removed from her mother, transferred to
the Warialda home in Brisbane, and prepared for fostering and adoption. Her mother remained at the hospital, now having had two loves ripped away from her.
Two lovers, forcibly separated, and an infant in an unknown location, being given to someone else.

All hope was lost.

That is the story of my biological parents, and me. It continues.


In 2003, I searched for,  and found, both my biological mother and father.

In 2004, my biological mother and father saw each other for the first time in 33 years.

In 2005, they married.

In 2024, the lovers are separated once more, with him in a secure nursing home with dementia of the Alzheimers type, and her,  with emotional and physical frailty, in a different nursing home.

Underlying this, like a discordant threnody, lies the falsehoods that saw the mother and father
institutionalised while very young.

She went in before the age of 10, with borderline schizophrenia.

He went in at 11, with schizophrenia and borderline mental retardation. They both got out of the system, and to this day, are not on medication for schizophrenia, indicating they never had the condition in the first place.

In the mid-20th century, especially during the 1940s and 1950s, there was a significant lack of understanding and knowledge about autism. Many children who today would be recognized as autistic were often misdiagnosed or misunderstood. Terms like “borderline mental retardation” and “childhood schizophrenia” were commonly used to describe behaviors and conditions that we now recognize as part of the autism spectrum.

So it’s entirely possible that both of my biological parents are neurodivergent, with either ADHD, autism, or both. My biological father was surrendered as a ward of the state by his parents, and what is described of his behaviour matches a PDA response. My biological mother was a quiet, reserved child, often “away with the fairies”, detested by her adopted mother, and was committed to the psychiatric hospital by her adoptive parents. That sounds an awful lot like the inattentive ADHD type.

In the “pick up sticks” process of meiosis, when DNA from both parents is jumbled and shuffled to create the zygote that then becomes an embryo, which then becomes  a foetus, and then becomes a baby, it was almost a dead certainty that their child, me, would be neurodivergent; autistic, in fact.

Experts posit that autism is a combination of genetic and environmental factors. Environmental factors would include whatever drugs she was taking in that hospital, both before and after they knew she was pregnant. There wouldn’t have been a folate supplement, or any of the things that are recommended for intending and expectant mothers today.

Research into and knowledge about autism has come a long way since then, but mostly relevant only for five year old white boys. The gaps in knowledge about autism and girls, autism and ethnicity,  and autism and aging are still wide, and the DSM-5-TR diagnosis criteria are still looking at the male  presentation of autism.

All we can do is keep speaking up, advocating, participating in research and making the most of every single day. Autism is more than Autism Awareness Day, Week or Month. Autism is for life.

RSD, PDA and sensory seeking

In this post,  I’d like you to take a walk with me.  Engage your imagination, then engage your empathy and open your mind to possibility and potential.

Imagine this scenario.  Two pre-teen girls, the best of friends, having a sleepover. Or, close to midnight, not sleeping but having a snack and ceaseless chatter behind a closed bedroom door.

They hear bumps and thumps, and one girl yells out to her younger brother to stop being creepy and to stop eavesdropping.

On hearing this,  the younger brother bursts into the room, limping with a moonboot on his right foot. He trips on a bag left by the door, and falls on to the floor, arms reaching out to break his fall.

One girl screams, thinking he was reaching for her. This brings Mum to the bedroom door, where she sees her son on the floor, raging, and her daughter and her daughter’s best friend, huddled on the bed, as far away from the boy as they can get.

Mum tells the girls to go into the lounge room, and they dart around the boy to get out of the bedroom.

Mum leaves the boy where he is, to wear himself out, and brings the girls’ bags out to them, suggesting that the friend’s dad could come and get them, to continue the sleepover at her home. The friend is nearly hysterical, thinking she had nearly been attacked.

Her dad arrives and both girls race out to his car.

The boy has gotten himself up and appears in the lounge room just as the front door closes behind the door. He is shouting and swearing, words unintelligible as they run together in his agitation, and he is hitting his head with his hands and stamping on the floor with his moonboot.

It’s a stark scenario, isn’t it? So let’s add that the mum and the daughter have ADHD, and the boy has autism. How does your perspective of this scenario change?

Could the timbre, pitch, tone and volume of the girls’ chatter have triggered sensory issues for the boy?

Could the closed door have triggered rejection sensitivity dysphoria (RSD) for the boy?

Could the closed door have triggered pathological demand avoidance (PDA) for the boy?

What sensory seeking issues are present in behaviour involving the moonboot, such as stamping the foot and the possible aggravation of  injury that required the moonboot for the boy?

What do his mum and his sister understand about their autistic son and brother?

What do his mum and sister understand about their own ADHD?

At the age of 11, what does the girl experience if she has RSD and is experiencing the desire to fit in with her friends and deal with peer pressure?

What does the girls’ departure do for the boy’s RSD?

What if we have a family that is a single, widowed mum with ADHD, diagnosed when her daughter was diagnosed,  with two neurodivergent children, working full-time, managing her grief,  a full time job to support her family, and self-managing three NDIS accounts?

It’s a stark scenario, whichever way you look at it.

Autism doesn’t end on 30 April, the end of Autism Awareness Month. Autism awareness, just like autism, is a 24/7 issue for families and friends or autistic people, just like it is for autistic people themselves, adults and children

How do you, or how can you, support the autistic people in your life?

Footnote, courtesy of ChatGPT:

RSD is primarily associated with intense emotional reactions to perceived rejection or criticism. People with RSD might be hypersensitive to social cues and might overreact to situations where they feel criticized or judged, even if the criticism is not intended or is minor.

PDA is characterized by an extreme aversion to demands and expectations. Individuals with PDA often resist and avoid tasks or requests, sometimes to an extent that significantly impacts their daily functioning. This behavior is typically not driven by fear of rejection but rather a need to maintain control and autonomy.

Sensory seeking traits in autism refer to behaviors and preferences where individuals actively seek out or crave sensory input in various ways. These sensory seeking behaviors are part of the broader sensory processing differences commonly observed in individuals with autism spectrum disorder (ASD).

Here are some common sensory seeking traits in autism:

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.

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 behaviors like staring at moving objects or watching spinning objects.

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.

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.

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.

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.These sensory seeking traits can vary widely among individuals with autism and may change over time or in different environments.

Understanding and addressing these sensory needs and preferences are essential in creating supportive environments and developing effective interventions to help individuals with autism thrive and engage more comfortably in daily activities.