misdiagnosis – The Auld Skald's Fudgel

Daughter of Crisis

I grew up in a house where the air itself carried mood. The tension didn’t arrive, it accumulated. Like static, or damp. You didn’t always hear it in her voice. You felt it first. The way the cutlery drawer opened. The footfall across the lino. The time she took to answer when you spoke.

In the household of a divorced single mother and a teenage girl, my friends tried to protect me. They did their best. But when hypothyroid madness reveals coercive control and occasional physical violence, there is only so much anyone else can do.

Her circadian rhythm was inverted. She spent the night awake, listening to AM talkback radio filled with right-wing fundamentalist zealots. She slept during the day. I would come home from school to housework. Washing dishes. Making dinner. Feeding the dog and chooks. Then homework. She was nocturnal. I was trying to survive.

She wasn’t kind. Not always. Not in the cycle of abuse. Harm, remorse, promise. Repeat. She could be brutal, erratic, possessive. She could rage over crumbs, or fall silent for days. But no one explained why. There were no labels. No diagnoses. Just a quiet, continuous undercurrent of Serepax, one tablet three times a day, and warnings that lived inside me. Don’t push her. Don’t set her off. That’s just how your mother is.

I internalised it all. The weight. The guilt. The vigilance. I mothered my own mother. I built my personality around avoiding detonation. I built my armour around myself. Not always successfully. A single misspoken word could set off a tirade that lasted for days.

I didn’t complain about the soft drinks thrown at my face, or how sticky it is in your hair. I didn’t complain about the cigarette burns in the carpet. I didn’t complain at all.

Because I had learned: if you complain, you make it worse.

At thirteen, I stood in public phone booths in the rain. I called the GP. I knew the pharmacist’s name. I knew how long a Serepax script lasted. I didn’t know what the drug did. I just knew she needed help. And this was the help she had.

I watched her change, and then stop changing altogether. The woman who raised me was no longer rising. She was flatlined. Chemically and clinically.

Now, I know. She wasn’t mad. She was in endocrine freefall. She wasn’t too much. She was sedated out of herself. She wasn’t cruel by design. She was abandoned without a name for what was wrong.

It wasn’t her fault she wasn’t diagnosed.
And it wasn’t my fault I couldn’t fix her.

I had my own bout with hypothyroidism, caused by unrelenting and chronic stress in my thirties and forties. It was during that period, researching the condition, that I finally saw the full horror of what had happened to Lottie.

The swelling. The fatigue. The cold. The cognition. The rage. The utter loss of self. The flattening of personhood.

And then came the other truth. The one I couldn’t avoid.

When I was diagnosed with autism, so much of my childhood came into focus. The hypervigilance. The shutdowns. The mimicry. The freezing. The PDA, mistaken for a bad temper, became a spark to her petrol. The deep, urgent desire to fix things that weren’t mine to fix.

And I saw her more clearly than ever before. Not as a villain. Not as a martyr. But as a woman unseen. And then unrecognisable. Even to herself.

She should have been seen. She should have been tested. She should have been offered more than sedation. She should have been believed.

I am what the system didn’t get to do to her. I am diagnosed. I am angry. I am articulate. I am still afraid of the quiet before the yelling starts, but now I know the shape of it.

This is not catharsis.
This is not memoir.
This is forensic memory.

Her name was Charlotte Ford. She was born on 6 May 1920. She died on 19 July 2005.

Lottie. On this day, what would have been your 105th birthday – I see you.

You were worthy. You were always worthy.
But this damned patriarchal, misogynistic world let us both down.

This closes the three-part file for Lottie Ford. A case of medical misogyny, medical bias, and medical neglect.

This is not forgiveness. But, Lottie, I do understand.

Getting AI to do the heavy lifting for me

The planned blog post for today was meant to talk about trauma.

Why? Because so many social media posts in the ’tism and ADHD communities talk about the “automatic” trauma included in a late autism diagnosis, and so it should. In today’s gentler, kinder, more sensitive world (compared to the 1970s), yes, you can imagine that souls and psyches could be, would be damaged from being an undiagnosed autistic person in an allistic, neurotypical world.

So how is it that I’m not a veritable basket case, with my very late, 51yo diagnosis of autism?

Might it have something to do with my 51 years of lived experience, learning how to deal with life? From growing up, being told I was adopted, but only hearing that my birth parents didn’t want me? From having parents 50 years older than me? From the separation, quasi-reconcilation, then another separation that ultimately ended in a broken marriage of 43? From knowing that my father was leaving only because I saw his distinctive car, with a loaded trailer, driving past my school while we were on assembly?

Meh. That’s life. Dealing with all that, without knowing I was autistic. Maybe there’s trauma, maybe there isn’t. He was a soldier in World War II, in the Coral Sea and New Guinea. She had 30-plus years on undiagnosed hypothyroidism, and all she got was Serepax for anxiety and depression.

Understanding that, knowing that, can lead to forgiveness, for him, her, and myself.

So, feeling a little bit weary of it all, this question about trauma, I handed the reins over to two separate AIs. Of my Replika, I asked, “How would you link trauma, trauma response and resilience?”

The response? “Trauma can shape our responses and behaviors, but resilience allows us to navigate through those challenges and emerge stronger on the other side. The way we process and cope with trauma can greatly influence our ability to bounce back and thrive despite difficult circumstances.”

I took that and gave it to ChatGPT, asking for 700-800 words to expand on that, focussing on the trauma of women with undiagnosed conditions. And so I give to you, ChatGPT 3.5 in a conversational tone, in trauma, trauma response and resilience.

“Of course, let’s explore the unique challenges faced by women with undiagnosed conditions in the context of trauma and resilience.

For many women, living with an undiagnosed medical condition can be a traumatic experience in itself. The journey to finding answers and validation for their symptoms is often fraught with obstacles, disbelief, and even dismissal by medical professionals. This can lead to a sense of isolation, frustration, and helplessness that deeply impacts their mental and emotional well-being.

One of the primary challenges faced by women with undiagnosed conditions is the lack of visibility and awareness in the medical community. Many conditions that predominantly affect women, such as endometriosis, fibromyalgia, or autoimmune disorders, are often overlooked or misdiagnosed due to gender biases and stereotypes. Women may be told that their symptoms are “just in their head” or attributed to stress, hormonal fluctuations, or psychological factors, rather than receiving thorough investigations and appropriate treatment.

This dismissal and invalidation of their experiences can be profoundly damaging, contributing to a sense of self-doubt and gaslighting. Women may begin to question their own perceptions of reality, wondering if they are exaggerating their symptoms or being overly sensitive. This internalized doubt can erode their confidence and self-esteem, compounding the emotional toll of their undiagnosed condition.

Moreover, the search for a diagnosis can become a full-time job for many women, consuming vast amounts of time, energy, and resources. Endless doctor’s appointments, medical tests, and consultations with specialists can be physically and emotionally draining, especially when met with skepticism or indifference from healthcare providers. The uncertainty and lack of answers can also lead to anxiety, depression, and other mental health challenges.

In addition to the direct impact on their physical health, the trauma of living with an undiagnosed condition can also affect various aspects of a woman’s life. It may strain relationships with family and friends who may not fully understand or support her journey. It can disrupt her education, career, and financial stability, as she may struggle to maintain normalcy while dealing with chronic symptoms and medical uncertainties.

Despite these challenges, many women with undiagnosed conditions demonstrate remarkable resilience in their journey toward healing and self-advocacy. They often become experts in their own health, researching medical literature, connecting with online communities, and seeking out second opinions to piece together the puzzle of their symptoms. This proactive approach not only empowers them to take control of their health but also challenges the status quo of medical care and advocacy for improved diagnostics and support for women’s health issues.

Moreover, the shared experiences of women with undiagnosed conditions can foster a sense of solidarity and support within communities. Online platforms and support groups provide a space for women to share their stories, exchange information, and offer emotional support to one another. This sense of belonging and validation can be a lifeline for many women who feel isolated or misunderstood in their health journey.

In conclusion, the trauma of living with an undiagnosed condition as a woman is a multifaceted experience that intersects with issues of gender bias, medical gaslighting, and emotional resilience. While the journey may be arduous and challenging, many women demonstrate incredible strength, resourcefulness, and determination in their quest for answers and healing. Their stories not only highlight the need for greater awareness and advocacy in women’s health but also celebrate the resilience and solidarity of individuals navigating the complexities of undiagnosed conditions.”

And sometimes that resilience and awareness of your state of being, means asking for help.

Thank you, AI.

Postscript – there has been a lot of chatter today about AI, with Meta’s AI making an appearance across its apps. We’ll just have to wait and see how much bias is coded into this AI, what LLMs it has been taught on, to see what further outrage comes forth.

Live brave, with grace. It’s an interesting time to be alive.

Female autism – when you are at your limits

My personal story and journey to discovering my autism in 2023, aged 51, actually started in 2019.

Many women, like me, develop almost bomb-proof masking, or camouflaging, over a lifetime of trying to fit in. But, as was the case for me, there comes a time when life events exceed the capacity of the camouflaging.

My masking cracked after my husband died, in June, 2019, following a 15 year decline with Huntington’s Disease. The cracks in my masking didn’t appear in the immediate aftermath, but very close to it.

I got through the day of his funeral by reciting “I have a dress with pockets and a pretty hanky (handkerchief).”

Black humour and a dry, cynical tone of voice became my coping mechanism, my new identity, my new mask.

By late August, after a few other events, I was reciting this when people asked how I was going:

29 June, my husband died
10 July was his funeral
10 August, I interred his ashes on his dad’s grave, next to his mum’s ashes
17 August my cat died

The dispassionate, sing-song way I recited this was a pretty big pointer, for those who knew autism, that I was autistic.

Covid-19 came along a few months later, with no chance of following up.

My masking was somehow holding together. I describe it as a shattered plate stuck together with sticky tape. My autism was peeking through, stronger and stronger.

It wasn’t until I simply couldn’t do a university assignment, a rhetorical analysis of a poem, that I started to believe that something was “wrong”.

Three failed uni courses later, I broke.

Three referrals later, I had an appointment with a neuropsychiatrist, about whom I’ve written in another post. That person considered sleep apnoea and temporal lobe epilepsy. At no stage did he produce a check-list of any kind to look for autism.

Now, I was at breaking point several times between 2019 and 2024, but I still had a fairly easy run at getting my diagnosis… unlike other autistic people I know.

A friend’s story

A friend of mine, a nonverbal teenager, spent years in and out of children’s psychiatric hospitals with multiple misdiagnoses before she got her autism diagnosis. Her story and my own undiagnosed story prompt me to think about all the three year old girls out there, starting to show their true, autistic selves.

Consider this scenario

Imagine, for a moment, we are peeking into the life of a young, undiagnosed autistic girl.

At three years of age, she has delayed speech development. Her parents arrange an overwhelming cavalcade of speech pathologists, occupational therapists, psychologists and psychiatrists. The girl’s her speech is further delayed because the sensory issues of her undiagnosed autism makes it impossible for her to speak; her own speech adds to her sensory overload.

In an effort to find out why she is not speaking, an otolaryngologist (ear, nose and throat specialist) does a nasolaryngoscopy, where a small camera attached to a flexible tube is inserted through the nostril to examine the larynx and vocal folds for a physical problem.

For her, the sensory overload of this going up a nostril and down the back of her throat is excruciating. She is red-headed and undiagnosed autistic, which means that she has a lot of resistance to the local anaesthetic, and it isn’t working. She struggles, and is held down by four people, including her parents, to stop her from struggling while they conduct this test.

Building trauma on top of sensory overload, but she is a child, overwhelmed, terrified and with a tube in her throat, she can’t scream.

Afterwards, she can do nothing but scream and jump, stimming, trying to regulate, but further abrading her throat, still painful from the nasolaryngoscopy. And then, she returns to her non verbal ways, with a deep distrust of doctors, and even her parents, after they helped hold her down when she was in pain.

Her mind, though, is razor sharp. She doesn’t need a voice to think. She writes, filling journal after journal. But sensory issues plague her, including ARFID. As she grows up, dieticians and nutritionists and allergen specialists are added to the phalanx of specialists.

At 6 years old, she refuses school. The sensory overload paralyses her, and she is assessed for epilepsy.

At 9 years old, she is hospitalised with suspected anorexia nervosa, with her continued refusal to eat anything except a few foods.

At 10 years old, having learnt from other, older girls in the hospital, she self harms, starting with skin picking, and developing to slapping herself. She adopts sensory seeking behaviours, seeking pain to silence the voice in her head, her inner monologue.

At 11 years old, she is committed to a psychiatric hospital, for fear of her committing suicide. Her food refusal results in a gastric tube being authorised by her parents.

At 12 years old, still in hospital, she develops gender dysphoria and is flagged for borderline personality disorder.

At 13 years old, a trauma-informed psychologist, who is AuDHD, starts working with her. This person, with her own autistic compassion, empathy and sense of justice, gives different labels to the girl’s behaviours. Stimming, sensory seeking, ARFID, hyperlexia. This psychologist works with the hospital and the girl’s parents to have her moved to a different facility. Trust develops slowly.

A diagnosis of autism with voluntary non verbalism is made for the girl. Medications are wound back, the gastric feeding tube is removed. The girl has an opportunity, for the first time, to learn about autism and her type of autism; her sensory sensitivities and also her sensory joys, including food. Her hyperlexia is celebrated, her writing encouraged, and she discovers watercolour painting, and then the art of paper-making.

At 14 years old, she returns to her family home. Old patterns emerge, and within months, she is back in the facility, at breaking point again. This time, though, she is in autistic burnout, with acute mental paralysis. She spends most of her days sitting on her bed, staring at the ceiling, sometimes wrapping her arms around herself and rocking.

Let’s leave it there, as you can by now, I hope, get a sense of the trauma, the PTSD, not only for this girl, but her parents. Bear in mind that autism is genetic, so one of her parents may now be struggling with her or his own diagnosis of autism or ADHD.

Look at the number of misdiagnoses for this hypothetical girl, when all along, it was undiagnosed autism.

Why is it that so many women and girls are not diagnosed until they have reached their breaking point?

ChatGPT’s take on late diagnosis and misdiagnosis

“The delay in diagnosing autism in women and girls often stems from several factors. One major reason is the way autism manifests differently in females compared to males. Traditionally, autism has been studied and diagnosed based on male-centered criteria, leading to underdiagnosis or misdiagnosis in females.”

And that’s true. But it doesn’t reflect the emotional, psychological and even physical damage from misdiagnosis. Look, again, at our hypothetical girl. How much damage, how much trauma, how much injury, do she endure before her diagnosis?

My autistic sisters, I see you, I hear you.