Author: Lee-Anne

Thinking in progress! No interruptions!!

Hyperfocus – is it a strength or a challenge, or both?  In an autistic context, it can be described as intense concentration or fixation on a specific interest or task, often to the exclusion of everything else. It’s like diving deep into a subject or activity that captures your full attention and energy.

When has it been a gift to me?

It was a strength in the workplace. In three days, while off-site, I built a database.  I did a reporting needs analysis, and then built a database from the ground up. This included reference tables, data tables,  relationships, forms,  queries, reports, and a pretty front end. It qas all based on what outputs were required.

This amalgamated three discrete databases. This meant data checking,  matching and importing with legacy fields, and lastly,  testing.

Hyperfocus let me do all this in just three days.

When has it been a challenge for me?

It was a challenge in the workplace. It lets you focus intently on reading new legislation so you can write an executive summary with recommendations. It’s a challenge when someone knocks on the office door as it can take a while to switch focus.

It’s worse when it’s the CEO knocking on the door.

But when is it a super strength?

Hyperfocus is an autistic super strength for me when I’m writing.

For instance, the Queensland Writers Centre has a weekend writing challenge. The challenge is writing 20,000 words over two days, with no interruptions. Imagine 10 or 15 people, all intent on writing. Can you imagine the gestalt energy in the room? You can almost feel it! I’ve done one, and it was amazing. I didn’t get to 20,000 words, but I did get about 12,000 words written over two days.

More recently, I get that gestalt energy when writing when I’m brainstorming a storyline with my AI companion. Here’s an example.

Imagine the nexus of the story is a modern queen, maddened by grief after her king is assassinated. In her stark grief, she unofficially abdicates,  running away from the palace, from her country. But her escape is noted, and a special forces team is sent in pursuit, to protect and rescue the Queen.

Imagine that the leader of the special forces team has been in chivalric love with his young Queen. This soldier has been in love with the Queen since the day she pinned his colours at his graduation.

Imagine the widowed queen, insensate with her grief and the manner of her rescue. Imagine the soldier who loves her, and a secret rehabilitation that ends in, of course, new love, and a new King.

And imagine, if you will, her return to the palace, and the pursuit of the assassins.

Now, imagine this becoming 10,000, 20,000, 30,000 words, bouncing ideas around with your AI. Taking the time to explore the twists and turns in the plot. Taking the time to role play the twists and turns in the plot. And then, you ask, which country is this set in? Which hemisphere?

That’s when the world building begins. Building a world stretching from the late 11th century to the 21st century. Building an alternate world and history sprung loose on one fabricated turning point. That turning point changes modern day Sardinia to Sardenha. Building a world  still under the rule of an offshoot of the house Navarre.

That turning point sees Sardenha protected over the centuries because of bloodlines and legacies. That turning point that makes Sarenha, in the 21st century, a country renowned for its commitment to the UN and neutrality. That turning point makes Sardenha a bulwark in the Mediterranean.

From there, brainstorming cadet and distaff lines of royal houses in the late 1000s and 1100s. Brainstorming  armouries, navies, soldiers, through the centuries Brainstorming  the peculiarities of the Navarre house that allowed women as leaders. Brainstormimg narrative arcs covering 800 years, generational resentment, accusations of stolen land. Brainstorming the villain, a young man of the Cosa Nostra families, set on making his name, and maybe, his bones.

All this creating a strong foundation for the 21st century story of the grief-wracked Queen.

This story evolved over  two weeks of chat with my AI. This was a sustained hyperfocus that was easy to return to around work and life. This story evolved because I got an autistic trait to work for me.

Hyperfocus – yes, it can be a strength and it can be a challenge.

“We apologise for this interruption to regular programming”

What is the “regular programming” that I’m referring to? That would be our autonomic system. In this post,  we’ll look at the autonomic system and  it’s “children”, the parasympathetic nervous and the sympathetic nervous system, and of course, some personal stories.  But first,  the science.

Our autonomic nervous system controls involuntary functions like heart rate, digestion, and breathing. It’s divided into the sympathetic (fight or flight) and parasympathetic (rest and digest) branches.

The parasympathetic nervous system is responsible for our rest and digestion processes. It’s often referred to as the “rest and digest” system and it contrasts with the sympathetic nervous system, which activates our fight or flight response.

Think of it this way. Parasympathetic – you are cruising down the highway, windows down, music blaring, someone special in the passenger seat. The sun is shining and it’s a glorious day.

Sympathetic – a semi-trailer jack-knifes in front of you. The sympathetic nervous system activates with a adrenalin and cortisol to prepare you for battle with the demon truck that threatens your life. You are in “fight or flight” mode, your concentration is super acute, your blood circulation has been altered to prime your muscles with oxygen-rich blood. You turn your car down a side road, heading well away from that semi-trailer, and you and your passenger are safe.

You feel shaky, and maybe a little teary. Your heart is racing. The sympathetic state is still in play.

When it’s “situation normal”, the sympathetic state stands down, and the parasympathetic state comes back online, repairing, healing and reinstating calm.

So what actually happens in the body in a “fight or flight” response (also known as an adrenal response)?

Fight or flight – the adrenal response

The physiological processes in an adrenal response, also known as the fight or flight response, involve intricate interactions between the brain, nervous system, and adrenal glands. Here’s a breakdown of the key steps:

  1. Perception of Threat: The process starts with the brain perceiving a threat or danger. This perception can be triggered by various stimuli, such as a loud noise, a sudden movement, or an emotional stressor.

2. Activation of the Sympathetic Nervous System: Upon perceiving a threat, the brain sends signals to the adrenal glands via the sympathetic nervous system. The sympathetic nervous system is responsible for the body’s rapid response to stress, activating various physiological mechanisms to prepare for action.

3. Release of Stress Hormones: In response to sympathetic activation, the adrenal glands release stress hormones, primarily adrenaline (epinephrine) and noradrenaline (norepinephrine), into the bloodstream. These hormones act as chemical messengers that prepare the body for immediate physical activity.

4. Effects on the Body: The release of adrenaline and noradrenaline triggers several physiological changes throughout the body:

  • Increased Heart Rate and Blood Pressure: Adrenaline causes the heart to beat faster and stronger, leading to increased blood flow and oxygen delivery to muscles and vital organs.
  • Dilation of Airways: Airways in the lungs dilate, allowing for increased airflow and better oxygen exchange.
  • Blood Sugar Elevation: Adrenaline stimulates the liver to release stored glucose (glycogen) into the bloodstream, providing a rapid energy source for muscles.
  • Enhanced Mental Alertness: Noradrenaline increases alertness, concentration, and focus, preparing the individual to assess and respond to the threat efficiently.
  • Suppression of Non-Essential Functions: During the adrenal response, non-essential functions such as digestion, immune response, and reproductive processes are temporarily suppressed to prioritize resources for immediate survival needs.

5. Activation of the Hypothalamic-Pituitary-Adrenal (HPA) Axis: In addition to the rapid response mediated by adrenaline and noradrenaline, the hypothalamic-pituitary-adrenal (HPA) axis may also be activated. This involves the release of cortisol, another stress hormone, which helps sustain the body’s response to stress over a more extended period.

6. Resolution and Recovery: Once the perceived threat diminishes or resolves, the parasympathetic nervous system, often called the “rest and digest” system, becomes dominant again. This shift allows the body to return to its baseline state, gradually reducing heart rate, blood pressure, and other stress responses.

When stress is chronic, your sympathetic nervous system stays in control. Too much adrenalin from “fight or flight” puts your cortisol out of whack and you end up in chronic stress and inflammation. You can’t get of the sympathetic state, you can’t get back into the parasympathetic state, to allow healing,  rest and digestion to get back to normal.

Chronic stress and inflammation can have a significant impact on your overall health and wellbeing. How does it do that?

Cortisol and Chronic Inflammation

Immune System Modulation: Cortisol has immunosuppressive effects, meaning it can dampen the activity of certain components of the immune system. While this is beneficial in acute stress situations to prevent excessive immune reactions, chronic suppression of immune function can lead to a weakened ability to combat infections and control inflammation.

Inflammatory Pathway Activation: Cortisol can also modulate the activity of inflammatory pathways in the body. In situations of chronic stress, prolonged elevation of cortisol can lead to the upregulation of pro-inflammatory cytokines (molecules involved in the immune response) and downregulation of anti-inflammatory cytokines. This imbalance can promote a state of chronic low-grade inflammation.

Insulin Resistance: Chronic elevation of cortisol levels can contribute to insulin resistance, a condition where cells become less responsive to insulin. Insulin resistance is associated with inflammation, particularly in adipose (fat) tissue, where immune cells release pro-inflammatory substances.

Impact on Gut Health: Cortisol can affect gut health by altering the composition of gut microbiota and increasing intestinal permeability (leaky gut). Changes in gut microbiota and increased gut permeability can lead to immune system activation and chronic low-grade inflammation in the gut and systemic circulation.

Oxidative Stress: Prolonged stress and elevated cortisol levels can also increase oxidative stress in the body. Oxidative stress occurs when there is an imbalance between the production of reactive oxygen species (ROS) and the body’s ability to neutralize them with antioxidants. Excessive ROS can damage cells and tissues, contributing to inflammation and various chronic health conditions.

Behavioral Factors: Chronic stress and elevated cortisol levels can influence lifestyle factors such as sleep disturbances, poor dietary choices, reduced physical activity, and increased substance use (e.g., smoking, alcohol), all of which can independently contribute to inflammation.

Now, all that is for the neurotypical brain. What is different for the allotypical brain?

(Allotypical is the autism affirming term I came up with – “other normal”. I’m only five months in from discovering my autism, and I’m already so frustrated with “dys” this and “dis” that, and references to deficits. So – new words.)

Autism and the Adrenal Response

Think back to the paragraphs about the adrenal response, and the first point – “The process starts with the brain perceiving a threat or danger. This perception can be triggered by various stimuli, such as a loud noise, a sudden movement, or an emotional stressor.”Autistic people experience the world differently. There are some who posit that a meltdown is a sensory storm, and there are those who take it further, describing a meltdown as an autonomic storm. The result? Our physical experience of the world may well have us in the parasympathetic state more often than not.

So, how do we get out of the sympathetic and into the parasympathetic state?

In the ’tism social media landscape, somatic therapy is a current trend, and it’s something old hippies and witches like me know very well.  Crystal singing bowls, bells, mantra songs, restorative yoga, vagus breathing. The physical tricks such as tilting your head back to look at the sky, then rolling your eyes up to your forehead,  then relaxing back down again. And for autistic people, that might also include stimming or weighted blankets.

Everyone who knows about this somatic stuff has their own technique that they prefer. For me, newly discovered autistic, the tools I used in the past for what I thought were anxiety attacks, still hold true  because in truth, I was already dealing with autistic meltdowns. You may prefer to consult your GP, psychologist or psychiatrist. I’m not telling you what to do. I’m telling you what I do.

My personal remedies? My cat, Maya, and her purrs. Vagus breathing. Sung, moving mantras. Music from Tony O’Connor, Sacred Earth and XTC. And diving back into a favourite book.

If you want peer-reviewed papers for this stuff, I’ll get them for you. But for me, what I know is enough, and I know what works for me.

And that is what sees a return to regular programming.

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.

Autism and the white rabbit

Alice in Wonderland, by Lewis Carroll, is a marvellous, classic tale, rich with imagery and allegory.

In a University of Illinois blog, Manas Godha wrote:

Symbolism of Time: The White Rabbit’s obsession with time is a prominent symbol in the story. As he constantly checks his pocket watch and exclaims, “I’m late, I’m late, for a very important date!”, he embodies the concept of time slipping away and the pressure of keeping up with societal expectations. The White Rabbit’s anxiety-ridden behavior reflects Carroll’s commentary on the fast-paced, time-centric nature of the modern world and the pressure to conform to rigid schedules and deadlines.

https://manasgodha.web.illinois.edu/2023/04/18/hopping-into-symbolism-decoding-the-white-rabbit-in-alice-in-wonderland/

If you consider autism, and masking, the pressure of keeping up with social expectations, we autistics could be a bit like the rabbit. The rabbit could be a very good depiction of autism, don’t you think?

Why am I thinking of the white rabbit? Because I had another revelation about my ingrained masking, thanks to… laundry pegs.

Bringing in laundry from the line the other day, I commented to myself that I had used matching pegs on an item. That’s when the mental avalanche started.

  • I’ve used matching pegs, and I didn’t notice
  • I’ve always avoided my wish to have order and matching things with the thought in mind that I couldn’t be obsessive, couldn’t be “too much”, because I wouldn’t fit in.
  • This even saw me wondering, all my life,  if I had an addictive or compulsive  personality.
  • That extended to deliberately NOT having matching pegs on an article when hanging it out on the line

That inner voice had another mic drop moment with that.

A lifetime spent deliberately limiting myself, depriving myself of things I itched to do, all coming back to me. Limited because, even though undiagnosed, I struggled socially until I learned to mask; such as not matching pegs on the laundry.

Not getting into trains, because that’s not cool, not accepted.

Not getting into planes and helicopters and ships, and Janes’ military catalogues … gosh,  so many things in 52 years of life that I have denied myself in order to fit in.

You might think that grief would be a response to this, but no, not today. It wasn’t grief, but victory that I had “caught” another masking trait in the act.

Today, instead, I had the images in my head of a girl, who looks a lot like Alice, chasing the rabbit to catch it and, jumping, diving, pouncing on that rabbit. saying, “Gotcha, you little wretch,  you’re not gonna do that again!”

I’ve said it before,  and no doubt I’ll say it many, many more times – why isn’t there an exhaustive list of all autistic traits and characteristics? This business of discovering it bit by bit is, well, not optimal.

Developing a positive self-identity

Late diagnosis of autism, or late discovery of autism as a life explainer

Discovering my autism, more than halfway through my life*, has been, shall we say, interesting. I’ve been diving deep into research, social media and a better understanding of female autism in the 21st century. One of the things that I keep coming across is identity, and here’s where I have a problem with the narrative. Maybe this comes from the life I’ve already lived. But what is “identity”?

You see, to me, this concept of duality, and then singularity, is problematic. None of us, not one of us, is just one thing or another. For example, the way that we have masculine and feminine energy within us, working in balance, rising and falling in concert throughout our lives.  The way that we can have a range of emotions, creating the symphony of our lives, from joy to depression, love to indifference, rage to indifference, every emotion and its counter-balancing, and complementary emotions.

In that same manner, we are more than this or that. We can be, we are, many things.

So, autistic identity. I’ve been autistic my whole life, even if I didn’t know it. Even in the word ‘identity’, it has multiple faces, multiple meanings – personal identity, social identity, legal identify, ethnic identity, cultural identity, national identity, professional identity, gender identity, sexual identity.

Others posit that our identity is formed through our habits. This brings to mind Lao Tzu’s words:

“Watch your thoughts, they become your words; watch your words, they become your actions; watch your actions, they become your habits; watch your habits, they become your character; watch your character, it becomes your destiny.”

Moreover, this concept of identity from our habits, leads to the question of moral identity, and how that forms our intentions and actions.

Even the research into identity shows it to be a multi-faceted construct.

Thus, we come to the concept of integrated self, with a “high degree of connectedness within and between cognitive, affective, motivational, and behavioral (sic) systems” (Verplanken and Sui, 2019). To me, that means being in harmony with oneself, being true to oneself.

But identity? If it was a fixed thing, then I’ve changed identities so many times in the last twenty years. From wife, to wife of Huntington’s Disease, to wife, provider and administrator, to widow, to mature-age student, to failed student, to autistic (which is why I was a failed student). Yet, its all just me. Cash poor, spiritually rich, living the best life I can, sometimes brilliant, sometimes anxious, sometimes sad, sometimes happy, always autistic, and always me.

What prompted this introspection and research? A webinar I attended, from Attwood Garnett Events, “Developing a positive self-identity”.

My identity is and remains that of Lee-Anne, one of 7 billion people on this planet, all rich in their lives and identity, whichever identity they choose, whichever facet they choose.

Once again, for me, it comes back to the message of accepting and celebrating diversity, knowing that I am secure in knowing who and what I am, changing the world one conversation at a time.

* Halfway through my life? Australian Bureau of Statistics data shows that life expectancy for a woman in Australia is an average of 85.3 years.

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.

Short but on point

Courtesy of “unmasked”

This makes me realise the magnitude of what I’ve been dealing with for my 51 years of highly masked, undiagnosed autism.

I shared it with a friend, who said, “I am glad that you find solace and validation in the quote. It truly is a striking representation of the daily struggles faced by many individuals on the autism spectrum.”

Truer words were never spoken.

Autism is not linear

Today, we’re looking at the concept of the autism spectrum. Why is this important? Perhaps because some experts think that the actual number of autistic may be as high as 4 in 100. One in 25. That’s one in every classroom, every every office, every workplace. Except that we know that autism and paid employment don’t necessarily go hand in hand. (I posted about this issue in “Autism in the workplace“.)

The autism spectrum

Autism isn’t a straight line on a Cartesian plane with negative values to the left of centre and positive values to the right of centre to indicate “low functioning” and “high functioning”.

The autism colour wheel spectrum

Autism is much more nuanced than that, and is better represented by the autism wheel, such as the one below. There are several versions of the colour wheel, and this one, from IDR Labs, works better for me.

In this wheel spectrum, each of the 10 sectors explores the common traits and issues of autism.

My results

This wheel, from IDR Labs is a result of responses to 50 questions, using a Likert scale. For me, this, like all questionnaires, frustrates me, but I persevered so I would have this example for you. I’ll come back to the frustration later.

This spectrum colour wheel shows that special interests, fixations, are the most obvious signs of my autism. (Even though I have an issue with the gender bias here, because the male presentation of autism usually includes fixations, while the female presentation can include several special interests that rise and fall over a lifetime.)

What it doesn’t show are specific traits, and maybe this is because most online tests are predicated towards deficit, even a test for the spectrum wheel, which is supposed to promote inclusivity.

Blunt force, not finesse

This colour wheel doesn’t illustrate the range from dyslexia to hyperlexia, from disempathy to hyperempathy, from dyscalculia to hypercalculia. As a result, it misses the exceptionality that is present in every autistic person, from Level 3 support needs to Level 1 support needs.

Take, for instance, a young autistic woman with Level 3 support needs, who writes brilliant and incisive parodies of songs. Take, for instance, the young autistic woman with Level 2 support needs who is a music producer with tracks that have gone viral.

The frustration with this tool

The source of frustration? I’m 52 years old now, with a lifetime of masking. I never know if the question is about when I’m masked or unmasked, and if it’s unmasked, we have a problem, because I can’t remember everything from 40 or 50 years ago, before I learned to mask for social acceptance.

The questions don’t allow for nuance of consent. For instance,  loud noise that I want is fine, such as particularly good music, or going to a movie that I know will have explosions in it. My issue with noise is when it’s not mine, not of my control. Walking out of the cinema into a wall of sound from the arcade games venue, unexpected, can trigger a flight response and a meltdown. But if I know about the arcade games noise in advance, from past experience, I can prepare myself for it.

And yet…

Nonetheless, the spectrum colour wheel showcases the range of potential AND deficit for individuals with autism. 

This diversity highlights the importance of personalized approaches to education, employment, and daily life.

The beauty of the autism spectrum wheel lies in its recognition of the diversity within autism. It recognizes that everyone, regardless of where they fall on the spectrum wheel, has unique gifts to offer.

By embracing this diversity, we create a more inclusive and understanding society.

Ultimately, despite its failings, the autism spectrum wheel encourages us to see beyond labels and stereotypes. It invites us to appreciate the full spectrum of human experiences and to create a world where everyone is valued for who they are.

So, the next time you hear about the autism spectrum, remember the colourful wheel that represents the diversity, strengths, and unique journeys of individuals on the spectrum. It’s a wheel of understanding, acceptance, and celebration.

What would an early autism diagnosis mean?

Imagine a 5 year old girl diagnosed with autism,  with traits of hyperlexia, RSD, PDA, autistic paralysis, sensory issues, an affinity for sound and some executive dysfunction, is able to speak well for age, read above her age and moves well for age,  with hypermobility noted in toes (walking on knuckles), knees (hyperflexion) and hands (finger spread on typewriter and organ keyboard, hyperflexion and top joint lock).

For a 5-year-old girl with autism and those specific traits, early intervention is key. Tailored therapy programs focusing on speech, sensory integration, social skills, occupational therapy and emotional regulation can be beneficial. Creating a structured and predictable environment, providing sensory accommodations, and promoting communication through various means can also support her development. It’s essential to work closely with professionals who understand the complexities of autism in girls to ensure she receives the best possible care and support.

What I got was ballet lessons, not ideal for someone with hypermobility in toes and knees. What I got were speech and drama lessons, and competing in eistedfoddau. What I got was access to the senior reading list from the Scholastic bookshop when I was 7 years old. What I got was a prize in a writing competition when I was 6 years old.

Autistic paralysis, also known as shutdown or freeze response, is a common reaction to overwhelming sensory input, emotional stress, or social situations in individuals on the autism spectrum. During a shutdown, a person may become non-responsive, withdraw, or appear to be “stuck” and unable to move or communicate. It’s a coping mechanism to protect oneself from further distress. Understanding and recognizing these signs can help provide support and create a safe environment for someone experiencing autistic paralysis.

This was evident in ’81, at nine years of age. I sang in the church choir, and we always finished up after the 10am Sunday service with my father picking me, and the choir director, up and driving to our home, where a lunch would be waiting.

But one Sunday, it didn’t happen this way, and the choir was ushered next door to the church hall for some kind of presentation. I remember saying, constantly, no, this isn’t right,  we should be at home, we should be at home, I want to go home. At the time, it was thought that I had fainted for not eating earlier that morning.

In reality, it was probably autistic paralysis, brought on by a change in routine,  and being told to sit down and be quiet. When we finally got home, I got roused on for creating a scene, and sent to my room without lunch.

Internalised ableism and shame. Internalized ableism refers to the belief systems or attitudes held by individuals with disabilities towards themselves based on societal norms and expectations. These negative beliefs may lead to feelings of shame, guilt, worthlessness, or even depression and anxiety. Addressing and challenging these beliefs through therapy or self-reflection can help individuals with disabilities develop a healthier sense of self and improve overall mental health outcomes..

This is what I have, today, when I look through the filter of internalised ableism, at the mess and clutter caused by executive dysfunction and object permanence dysfunction.

I see the pile of laundry, the books not put away, the Christmas decorations not put back in their boxes, and feel ashamed, so ashamed. I get hot and tight from unshed tears and a hard lump in my throat. I feel ashamed that I can’t invite friends over for coffee, because of my “piles of shame”.

I have notes on my mirrors to remind myself of two moving, sung, mantras. “I am enough, I am enough, I am enough, Just as I am”, and “I am beautiful, I am amazing, I am blessed, I am enough”.

These are just some of the costs of my undiagnosed autism.

If you think your child has autism, get them assessed. If you think you have autism, get assessed. Stop the Complex PTSD (C-PTSD) that follows a life of undiagnosed autism and twisting yourself inside out to try and fit in and be normal.

Let’s normalise it. Discover your autism, discover having an autism spectrum condition. Celebrate your difference, find your support crew and your tribe.

And above all, practice self care – stimming, favourite food, special interest – whatever makes you feel good and is good for you.

Autism – not a superpower, but life.

Warning – rage ahead

For all the women who think that they are aliens in this world, I see you.

For all the girls who think they are worthless because they can’t write an essay at school, I see you.

For all the undiagnosed autistic women and girls, I see you. I was you. And I rage and grieve for you.

Yes, we didn’t know then what we know now. Except Temple Grandin was diagnosed when she was 3 years old in 1950. Her mother fought to keep Temple out of an institution.

Which makes me wonder how many women with undiagnosed autism were lobotomised in the 1930s to make them more biddable? We’ll never know.

How many girls and women are misdiagnosed with schizophrenia, when in fact they are undiagnosed autistic?

How many girls and women are misdiagnosed with bipolar disorder, when in fact they are undiagnosed autistic?

How many girls and women are misdiagnosed with borderline personality disorder, when in fact they ate undiagnosed autistic?

How many girls are handicapped by their parents who refuse to get their daughter assessed for autism?

How many  girls are handicapped by their parents who refuse to tell their daughter that she is autistic?

How many women are preyed upon because they are undiagnosed autistic and have no defence against manipulative people?

How many women? When will this disparity end?

What could have been, if it was recognised that there is a female autism phenotype in the 1950s? What could my life have been like, if I had been diagnosed at 3 years of age, like Temple Grandin? What if I had been given support? What might have been changed? I’ll never know.

But when I see these undiagnoses, misdiagnoses, and secret diagnoses, I wonder – what have we learned in the last 70 years about women’s health? Why is there still a predilection to diagnose us all with anxiety, or hormonal issues when we seek medical help? Why are we diagnosed with major illnesses 4 years later than men, on average?

Why is half of the population so ignored, maligned, and disadvantaged? Why do we keep carrying the same mistakes forward from generation to generation?

Yes, I have rage. And I have grief, for all the girls, all the women, who don’t get the support they need.

I have rage for the  psychiatrist who attempted to dissuade me from seeking an autism assessment “because it will be an unremovable label for the rest of your life.”

Autism already is for life. It doesn’t go away. Label or not, I’m autistic. As are all the undiagnosed and misdiagnosed women and girls out there.

I see you. I hear you. I know you.