ASD – Page 2 – The Auld Skald's Fudgel

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 21^st 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.

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?

Autism, creativity and integration of self

This morning, I was stumped. I had no idea what to write about. I asked a friend, who suggested I write about autism and creativity. I had a couple of moments of introspection and thought, along these lines.

I don’t know what my autistic creativity is.

Then the thought.As I said, I don

Yes, you do. You’ve been autistic your whole life, so every creative thought you’ve had or done has been your autistic creativity.

Well, damn, mike drop for the inner voice again..

I have a number of regular passengers who are autistic, and their creativity, around their special interests, is amazing.

The teenager focussed on game design.

The teenager focussed on music production.

The young woman writing parodies of songs with a theme of Australia and conservation.

But me, and my creativity? Remember, I’m (now) 52 years old, and discovered my autism late last year. And all my life, I have never thought of myself as creative. Yet, I write, I cook, I have gardened, and I crochet, among other things. While I was unknowingly autistic.

My writing? All my life. I won my first writing competition at the local eisteddfod, when I was 7. It was a story about a lizard who had lost his tail.

My cooking? All my life, from my first three-course meal when I was 8, to so many lunch and dinner parties, to now, in my meal prepping, where I am combatting of regression after autistic burnout. This meal prepping is creating tasty, budget friendly meals for my breakfasts and lunches. I’m looking at recipes and taking inspiration from them, creating meals tailored to me, my allergies and my budget.

Breakfasts such as frittata, omelette wraps, LSA bread with almond spread and sliced bananas, oat bakes with berries and chocolate, apple and cinnamon fritters, a baked rice pudding. Lunches such as chicken and loaded coleslaw, lentil and sweet potato salad, green salad with meatballs, green salad with crocodile, a dhal-like “hail mary”, pumpkin and salmon pasta bake. All for less than $4 per serve, using what I have in my pantry and freezer, like the crocodile meat. That got an overnight marinade in yoghurt mixed with my hot spice mix, with the heat coming from mustard and ginger, and a slow, low roast. My nightshade allergy rules out potatoes, tomatoes, chilli, and capsicum (peppers).

My gardening? Lost to depression and what I now know to be autistic burnout from a few years ago. But, oh, the gardens. Vegetables and flowers, all mixed in with companion planting. Heritage yellow tomatoes and luscious San Marzano (roma) tomatoes, not trellised but lying, lazy, on a bed of oregano, with chives, allyssum and marigolds in and around, given afternoon shade by a towering blue plumbago.

Sweet potatoes grown in a big bin, with the first monster weighing in at 1.2kgs. Pineapples, grown from a crown, such a beautiful, strappy, architectural plant during its slow growth.

Lettuces and rocket (arugula), salad greens, coriander (cilantro), beans, peas and sweet peas, aloe vera, and herbs – parsley, sage, rosemary and thyme… and lavender, curry plant, marjoram, lemon verbena, lemon balm, and so much more. I collected thyme, sage and mint varieties. Have you ever tasted a lemon thyme,a pineapple sage or an apple mint? And my beloved, and sorely missed, dwarf alstroemeria, and my miniature roses.

Oh, my roses. Dead from my depressed neglect. The miniature Black Jade, such a deep, luscious red. The miniature Irrestible, creamy white with a faint clove scent. The miniature Little Sunset, a harlequin of pinks, reds and yellows. The miniature Moon River, delicate pink with a vivacious, outrageous scent for its size. Beautiful little roses with a flower head the size of a 50c piece.

Their empty, barren pots and planters reproach me, every day.

With a creative hat on, and tried and true techniques, the food scraps from my meal prepping go into brown paper bags, what I think of as “compost bags”. These get buried at the bottom of a plant pot, then the soil is replenished with supplements of dried, matured manure, trace elements, blood and bone, powdered eggshells, and Seamungus, an organic pellet fertiliser. By the time these pots have matured soil that won’t burn delicate little roots, I’ll have a newfangled Bluetooth connected water timer tap, and little irrigation lines run to those pots, and then it’s time for planting.

Alyssum and coriander, to bring the pollinators. Wormwood, to keep the possums away. Chard and kale, in the right season, for folate, perpetual spinach, radish, salad greens, parsley, mint, nasturtiums, spring onions. All in pots on the kitchen verandah.

The bins, then, to be rejuvenated, for sweet potatoes.

Then there also the big raised cyprus planter boxes, 600mm x 600mm – four of them. Once rejuvenated, maybe another pineapple, maybe an aloe vera, maybe a wildflower seed mix. These are exposed to full sun, so these plants must be very hardy, and well catered.

That’s my plan, the creation of my new garden, food and flowers.

And all planned in a spreadsheet, of course. This is my autism. Plant, weeks to harvest, aerial plants and root plants alternating season by season, what’s in which pot with what companion plants, watering needs, nutrition needs.

Autistic creativity takes many forms.

What does your creativity look like?

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.