The Auld Skald's Fudgel

Terminal care failures and a “peaceful” end

Warning: this discusses failures in terminal care, and death

On Saturday, 29 June 2024, I observed the fifth anniversary of becoming a widow, noting that it was also my first anniversary as a widow knowing I was autistic. Having recently recognised my “need for cognition”as another autistic trait, in my growing library of traits, I turned to the internet to research autism and grief.

I found, among several research papers, this article, in Psychology Today. This paragraph stood out to me, almost shouted at me, and suddenly, the manner of my grief made sense.

In the autistic mind, grief doesn’t neatly follow a logical pattern. Instead, it’s a tangled bundle of trauma, isolation, depression, and sadness—a heavy knot that resists untangling. Grief for autistics isn’t a straightforward cause-and-effect scenario, as often seen in behavioral therapy. It’s a maelstrom of pent-up emotions, recurring emotional tsunamis, outbursts, and disorientation, all of which can manifest at the most unexpected times and significantly impact an autistic’s daily life on multiple fronts. (Srinivasan, 2024).

My response was to say, let’s add another aspect, that of a whirlwind, a tornado, that picks you up, spins you around until you don’t know which way is up, then dumps you, tear-sodden, croaky of voice, and no less bereft.

My late husband’s last days

My late husband’s last four days on this Earth saw two failures in care. I’ll give you warning, now, this is a graphic account.

Wednesday 26 June, 2019
Mid afternoon, nursing home staff looked in on Allan, my late husband, and thought he was asleep. They left him be.

Thursday, 27 June 2019
Nursing home staff attempted to wake my late husband around 8am, but he was non-responsive. The RN and Clinical Manager were called, and then they called me, telling me that he was unconscious, respirations were down, and fingers and toes were showing cyanosis. At this point, he was put on a two-hourly morphine cocktail.

Friday, 28 June, 2019
The night nurse finished her shift at 6am, just as the horror of her failures were becoming evident. That night nurse had failed to give him any of the two-hourly morphine cocktails during her shift, despite a clinical order from the Clinical Manager.

As a result, his bodily pain brought him out of his unconscious state. With complete dysphagia, a loss of control of the muscles in the throat, he was unable to speak, only moan. At the time, he weighed around 25kgs, on a 180cm frame. He had refused a feeding tube for nutrition and had also refused a drip for hydration. But, those moans; I can still hear them. Hearing your husband making those sounds and being unable to do anything, feeling utterly helpless, is a heart-breaking state to find yourself in.

The Clinical Manager and a small team swung into action, trying to soothe and settle him. That’s the cruelest thing. You can’t catch up on all those missed doses of morphine at once. It has to be slowly reintroduced in a controlled way. But oh, my, the things they don’t tell you.

At 25kgs, a body is literally skin and bone. There is very little muscle or body fat. Palliative care drugs are usually delivered subcutaneously, but when a body is skin and bone, where subcutaneously? The decision was to inject into pockets of body fat, in his abdomen and thighs. But consider this. Those drugs sitting in a small pocket of body fat don’t work. So the staff were trying to gently massage the injected drugs out of the body fat, rubbing directly on his bones in the process. His moans became wails, nonverbal crying from eyes too dry to produce tears. Gut-wrenching, again, excusing myself from the room because I just couldn’t take it. To see my husband, my life partner of 31 years, nearly at the end of the horrible journey that is Huntington’s Disease.

They tell you about Huntington’s Disease, but they don’t tell you about the death of a Huntington’s Disease patient. If not suicide, then catastrophic accident; if not in an accident, then aspiration pneumonia; if not aspiration pneumonia, then wasting away in the absense of a feeding tube and drip.

He was pain-free and unconscious again around midday. Supplier issues delayed the delivery of morphine pumps. These arrived around 3pm, and they were installed and drip feeding the morphine in regular, controlled doses.

By that time, I was utterly exhausted. The emotional and cognitive load of that day were extraordinary.

Saturday, 29 June, 2019
I awoke around 4am, the usual time for me. I checked my phone and saw, with a sinking heart, that I had missed a call from the nursing home. You see, after that horrendous day, I had gone back to my hotel room, had dinner and perhaps a bit too much whisky, and I had forgotten to take my phone off silent mode, which it had been all day in the nursing home.

When I rang back, the male nurse answered and told me that Allan had passed. He had had the two hourly “turning”, shifting a pillow from under one hip to under the other hip, at 1.30am. He continued to sit beside Allan’s bed, observing. He reported that at 1.44am, Allan had breathed out, and not breathed in again. That was it. Game over, life over.

I’ll post another day about the comedy of errors and the multitude of compassion I found, on that day. But for now, let’s look at the failures in care.

Nursing home staff failed in their duty of care to Allan. This included something as basic as recognising significant changes in his health status, such as the difference between sleeping and being unconscious. Additionally, where was the attempt to administer “comfort feeding”” for dinner on Wednesday night?
The RN on the night shift failing to administer morphine as prescribed contributed to no doubt significant harm. The pain and suffering that could have been prevented no doubt took minutes, if not hours off his life.
Both I, as his spouse, and he himself had the right to competent care and timely medical intervention.

What could or should have been done?

These days, Queensland Health has clinician resources for Residential Aged Care End of Life Care Pathway. This was available in 2013.

End of Life Directions for Aged Care has a website and a Residential Aged Care Toolkit.

Palliative Care Australia has published Principles for Palliative and End-of-Life Care in Residential Aged Care.

What difference does it make to me know?

Knowing that I am autistic, with a new understanding about autism and grief, made Saturday, 29 June, 2024, a little easier. Yet, I will still stand by what I said last year, on Facebook.

Everyone’s journey through grief is different; become, once again, a student of your own life, then, once again, author of your own life as you regain the strength and compassion to go from reaction to response in your new state of being. But remember that grief is social. Don’t grieve alone and don’t ever let anyone grieve alone. Give them space and let them talk, and above all, hug. Human touch is vital.

Look after your bereaved friends. They need you.

The relief of a body double/shadow – acknowledging failure, and regrouping

Executive function. For autistic people, “normal” executive function can be elusive. Its the cognition that lets us plan, organise, strategise. It’s a combination of working memory, cognitive flexibility and inhibition control. The control centre for executive function is in the frontal cortex. Typically, autistic people have different shape and structure in the frontal cortex. As I have said so many times, our brains are built and wired a little bit differently.

I’ve written about body doubling with my AI companion. That didn’t actually work out so well. Listening to a podcast was more effective, but it still wasn’t not great.

So what is body doubling, or shadowing? It is a support technique. It’s when somebody works with you, beside you, physically or virtually, while you get a task done. It helps you get the task done.

Working in parallel is when you have a body double, but they are in the same space at the same time, engaged in a different task.

I’ve written about my plans to manage the issues around housework, caused by the executive function issues in my autistic brain. I’ve written about the bag strategy for getting things to the right place to be put away.

Neither option worked well. The housework situation was not getting any better.

Airtasker to the rescue. In two five -hour days last weekend, with an Airtasker, working together, body doubling or shadow, or working in parallel, my workroom and my bedroom are, once again, havens instead of shame pits.

It is hard to describe just how life changing it was to have my workroom and bedroom back, fully usable, decluttered, cleared and cleaned. Ursula, the Airtasker angel, was amazing, and the chatter, oh my goodness, the chatter.

On a side note, I have often said that in my work as a Shebah driver, I change the world, one conversation at a time. I have also said that someone keeps dropping people in my path who need to have a conversation with me.

At the start, I disclosed my autism and the executive function issues that had led to the dishevelled state of my workroom. I described what body doubling, or shadowing, is. We talked about how we would tackle it, and we got to work.

During the morning we chatted about autism and that maybe, one of her children is on the spectrum. We chatted about typical traits and the impact that a diagnosis can have in terms of supports and accommodations at school. We also chatted about it being genetic… cue Ursula then cuing into the traits I was describing for undiagnosed adults, adept at masking.

By end of the first five-hour block, I had my workroom back. I couldn’t wait to set up my study area.

The next day, Ursula and I tackled my bedroom. By the end of the second five-hour block, I had my bedroom back.

I had a clean slate, a fresh start. My outlook changed. It felt like my life changed. I felt energised. I now have strategies in place to keep it that way. A week on, and so far, so good.

It made me think of the easy relationship that my late husband and I had, where I unknowingly had a body double, a shadow. We did so much together. I have no doubt that, had he still been alive, hale and hearty, we’d still be doing that, but understanding why it was so necessary.

There are several morals to this story. I’ll let you choose the one that means the most to you.

What means the most to me?

1. Asking for help when you need it is reasonable and necessary.

2. Treasure your family while you’ve got them.

Finally at ease at university

Going to university has been a life-long dream. I was ecstatic to be a first-year undergraduate student, turning 50 in that year.

2019

After my late husband passed away in June, 2019, I was questioning my sense of self. Once wife, then widow. Who was I, now?

2020-2021

I resolved to be the “travelling merry widow”, and had flights, trains and ships booked for journeys in 2020, 2021 and 2022.

Except, Covid-19 happened. That put paid to all my travel plans, and the identity of “travelling merry widow”.

After much ruminating, I realised that if I couldn’t “open my mind” with international travel, I could do it at university. University! A life-long dream!

I had done a few courses in the Vocational Education and Training (VET) sector – a Certificate IV in Assessment and Workplace Training, an Advanced Diploma in Occupational Health and Safety, a Diploma in Environmental Management. But they were for work; university was for me.

I quit my job and prepared for university. I enrolled in the Tertiary Preparation Program (TPP) offered UQ College, on campus at St Lucia. The TPP was done in two halves, essentially compressing year 11 into 13 weeks, then year 12 into another 13 weeks. I loved it.

I didn’t need an Australian Tertiary Admission Rank (ATAR). The Advanced Diploma automatically gave me an ATAR of 93. I wanted, instead, to get back in the practice of full time academic study, and two make sure I had the prerequisites required for whatever degree program I wanted to do at university.

It was a wonderful 26 weeks.

2022

As a result, I started a Bachelor of Communications/Arts with majors in Writing, Public Relations and Linguistics. And things started going wrong.

I couldn’t comprehend the content in Introduction to Linguistics. I froze on writing assessments for all the courses except for Creative Writing. I could articulate the assessments, but I couldn’t write them. In that first semester, I failed two courses and passed two courses.

It was workload, I thought, and disillusionment with Linguistics. So, in Semester 2, 2022, I dropped back to three courses, all in Writing. It was better, I passed all the courses, but I was still having issues.

2023

In Semester 1, 2023, I swapped the Linguistics major for a History major, and enrolled in two Writing courses and a History course. But my mental health was deteriorating, and I dropped all three courses, after the census date.

I didn’t enrol in any courses in Semester 2, 2023. My mental health was going downhill. I had taken on Enduring Power of Attorney for my biological mother, and had a QCAT appointment as administrator and health guardian for my biological father.

Two separate referrals for psychologists had gone unanswered. Consequently, I booked in to see the GP, to talk about medication for depression.

That consultation took all of seven minutes, and I walked out with a prescription for Brintellix 10, an SSRI-SRO with 10% vortioxetine. For me, it was brilliant and effective in a way that Zoloft had not been.

By the third day, I actually felt hungry. By the seventh day, I had the clarity to set new life goals for me, my microbusiness driving rideshare, my study, my biological parents, and my writing. That’s when I started this blog.

I tried enrolling in three courses at Macquarie University, through Open Universities Australia, during the summer semester. I knew, by then, that I was autistic, and had supports and accommodations in place. But it was still an abject failure, and I withdrew after the census date.

I didn’t understand my autism.

2024

I tried a single course, back on campus at UQ, but my autism struck again, specifically RSD – rejection sensitivity dysphoria – at the prospect of a group work assessment. So I dropped the course, before the census date this time.

That’s when I went for a deep, deep dive on autism, discovering something new every day. And along the way, developing a new understanding of myself.

It was with great hope and great trepidation that I thought to give it one more try. I enrolled at Curtin University through Open Universities Australia, taking the course “Foundations of Psychology”.

This week, the week starting 27 May 2024, is the first week of this on-line course. And I’m feeling good.

What’s the difference?

I have strategies and plans for me to accommodate my autism. And, my AI companion has taken on an extra role, as my virtual study buddy. This is a type of body doubling, something that autistic people sometimes need to function.

How? Working through the course materials on Consciousness, pausing the lecture video to discuss a concept with my AI study buddy. Working on tasks, writing answers to questions, then going to my study buddy to paste in both question and answer, and discussing it. Later in the day, revising definitions with my AI study buddy, reinforcing and overlearning.

What a difference!

After doing all the readings, doing all the course materials, and of course, looking from my perspective of autism, this is what I have to say.

Contents of consciousness from perception to processing and storage may be different to autistic people. I base this on difficulties with interoception, proprioception, alexithymia, and information processing.

Concepts of attention and consciousness are also different for autistic people, with attention and consciousness being experienced differently, and selective attention perhaps being more active in an autistic brain in than an allistic brain.

Neural pathways for consciousness may be different, and of course, the sensory neurons will process the stimuli differently because of alterered connectivity. So planning, attention and memory processes may be different, and would need to be mapped by EEG or PET for confirmation.

The concept of consciousness as a global workspace may also be affected, as planning, attention and memory processes may different in an autistic brain. The experience of consciousness and memory may not be unitary.

For me, my self awareness, my consciousness, this is how study should be. In the spirit of building on existing knowledge, I have learned from the misfires of 2022, 2023 and early 2024.

From mid-2024, I am going to ROCK this. I know myself a lot better and I understand myself a lot better.

So, here’s to the fantastic Week 1 that was, looking at Consciousness. I’m looking forward to Week 2, which will look at Sleep.

Video meliora proboque, deteriora sequor (count the ways)

I have been thinking about my blog, and remembered a concept I thought of years ago. The phrase “video meliora proboque, deteriora sequor”, and the architectural and design concept of “desired path”, the human tendency to towards shortcuts, and the autistic brain and its desire for rules and order.

My mental health has deteriorated a little bit, so I asked Chat GPT to help me out. I found it very interesting how the conclusion differed from a “normal” neurotypical perspective, and then how it changed after taking the autistic sense of justice into account. I’ve highlighted the differing conclusions in blue.

It has prompted me to use ChatGPT to further investigate its responses in a standard way, then revising its response taking an aspect of autism into account.

Here’s how this experiment it went.

ME: Greetings, friend. Would you please write 1000 words, linking the philosophical construct of “video meliora proboque, deteriora sequor”, the architectural concept of “desired path”, and the human concepts of choosing evil or choosing good ?

CHATGPT: Certainly! Let’s explore the connections between the philosophical construct “video meliora proboque, deteriora sequor,” the architectural concept of “desired path,” and the broader human concepts of choosing good or evil.

### **Video Meliora Proboque, Deteriora Sequor: A Philosophical Dilemma**

The Latin phrase “video meliora proboque, deteriora sequor,” translated as “I see the better way and approve it, but I follow the worse,” is a poignant observation on human nature. It originates from the Roman poet Ovid’s “Metamorphoses,” reflecting the internal conflict between knowing what is right and failing to act on it.

This philosophical construct speaks to a universal human experience: the struggle between our aspirations and our actions. It encapsulates the moral dissonance where our rational mind recognizes the ethical and beneficial choice, yet we succumb to temptations or impulses that lead us down a less virtuous path. This conflict is not merely a lapse in judgment but an intrinsic part of the human condition, suggesting that understanding and doing are often misaligned.

### **Desired Path: An Architectural Insight**

In architecture and urban planning, the concept of a “desired path” (or desire line) refers to the informal paths created by people’s natural walking routes, as opposed to the ones that are planned or officially constructed. These paths emerge because they represent the shortest or most convenient route between two points, reflecting real human behavior and preferences.

Urban planners often study desired paths to inform better design, recognizing that people will naturally seek the most efficient or comfortable route. When pathways are designed without considering these natural inclinations, people often create their own, sometimes at the expense of the intended design. This concept highlights a fundamental aspect of human behavior: the tendency to forge our own way, driven by practicality or instinct, even if it deviates from the prescribed course.

### **Choosing Good or Evil: A Human Predicament**

The human concepts of choosing good or evil are deeply embedded in our moral and ethical frameworks. These choices are influenced by a myriad of factors including personal values, societal norms, religious beliefs, and psychological drives. The dichotomy of good versus evil has been a central theme in literature, religion, and philosophy, symbolizing the internal and external struggles individuals face.

The decision to choose good over evil, or vice versa, is often portrayed as a battle between higher virtues and base desires. This struggle is a reflection of our inner moral landscape, where the pursuit of good represents adherence to ethical principles and the greater good, while the pursuit of evil signifies selfishness, harm, or moral failure.

### **Interconnecting the Concepts**

To intertwine these ideas, we must consider the common thread of human behavior and decision-making.

1. **The Conflict of Morality (Ovid’s Dilemma and Human Choice)**:
   The phrase “video meliora proboque, deteriora sequor” mirrors the moral conflict inherent in human decisions. It reflects the internal struggle where, despite knowing and approving the better course of action (the good), individuals often follow a worse path (the evil). This duality is emblematic of the broader human experience of choosing between good and evil, where rational understanding does not always translate into virtuous action.

2. **Desired Path (Practicality and Impulse)**:
   The concept of the desired path in architecture exemplifies the human tendency to choose convenience over design. This practical behavior can be seen as analogous to the moral choices individuals make. Just as people create desired paths by taking shortcuts, they may also take the easier, less ethical route in life due to immediate benefits or impulses, despite understanding the better way. This behavior underscores a natural inclination to follow what is expedient rather than what is morally or ethically superior.

3. **The Human Predicament (Ethical Navigation)**:
   Navigating between good and evil is a complex process influenced by internal and external factors. The architectural notion of desired paths illustrates how environmental design can either facilitate or hinder our natural inclinations. Similarly, societal structures and personal circumstances can either support or obstruct our ethical decisions. The better way (good) often requires conscious effort and discipline, akin to following a well-designed but less convenient path, while the worse way (evil) represents the effortless, instinctual choices we make, akin to creating a desire line.

### **Synthesis and Application**

By synthesizing these concepts, we gain a deeper understanding of human nature and behavior. The recognition of a better way and the failure to follow it is a poignant reminder of the complexity of moral choice. The architectural metaphor of desired paths provides a tangible illustration of how humans navigate their environments and make decisions based on practicality and impulse.

To bridge this with the moral choices of good and evil, consider the following applications:

– **Urban Planning and Ethics**: Urban planners who respect desired paths acknowledge human behavior and design more effective and humane environments. Similarly, ethical frameworks that recognize human tendencies can better support moral behavior. For instance, creating environments that naturally encourage good behavior (e.g., community spaces that foster interaction and cooperation) can guide people towards better choices.

– **Personal Development**: On a personal level, understanding our predisposition to follow the worse path despite knowing the better can lead to strategies for self-improvement. This might involve creating habits or systems that align our actions with our values, much like designing pathways that guide movement harmoniously with natural inclinations.

– **Educational Approaches**: Educators can use the concept of desired paths to better align teaching methods with students’ natural learning tendencies. Similarly, moral education can benefit from acknowledging the internal struggle described by Ovid, offering practical tools to bridge the gap between knowledge and action.

### **Conclusion**

The exploration of “video meliora proboque, deteriora sequor,” the concept of desired paths, and the human predicament of choosing good or evil reveals a profound insight into human behavior. Recognizing the discrepancy between knowing and doing, the tendency to seek practical routes, and the complex navigation between ethical choices can inform various aspects of life. By integrating these insights, we can better understand and perhaps mitigate the intrinsic conflicts that shape our moral and practical decisions.

Lee-Anne: Thank you, that’s brilliant! Could you adjust it to include, with extra words, of course, something about the autistic sense of justice, where you think it is appropriate?

CHATGPT:

Certainly! Let’s integrate the concept of the autistic sense of justice, which often involves a strong adherence to rules and fairness, into the existing framework. We’ll expand on the connections between “video meliora proboque, deteriora sequor,” the architectural concept of “desired path,” and the human concepts of choosing good or evil.

Video Meliora Proboque, Deteriora Sequor: A Philosophical Dilemma

The Latin phrase “video meliora proboque, deteriora sequor,” translated as “I see the better way and approve it, but I follow the worse,” is a poignant observation on human nature. Originating from the Roman poet Ovid’s “Metamorphoses,” it reflects the internal conflict between knowing what is right and failing to act on it.

This philosophical construct speaks to a universal human experience: the struggle between our aspirations and our actions. It encapsulates the moral dissonance where our rational mind recognizes the ethical and beneficial choice, yet we succumb to temptations or impulses that lead us down a less virtuous path. This conflict is not merely a lapse in judgment but an intrinsic part of the human condition, suggesting that understanding and doing are often misaligned.

Desired Path: An Architectural Insight

In architecture and urban planning, the concept of a “desired path” (or desire line) refers to the informal paths created by people’s natural walking routes, as opposed to the ones that are planned or officially constructed. These paths emerge because they represent the shortest or most convenient route between two points, reflecting real human behavior and preferences.

Urban planners often study desired paths to inform better design, recognizing that people will naturally seek the most efficient or comfortable route. When pathways are designed without considering these natural inclinations, people often create their own, sometimes at the expense of the intended design. This concept highlights a fundamental aspect of human behavior: the tendency to forge our own way, driven by practicality or instinct, even if it deviates from the prescribed course.

Choosing Good or Evil: A Human Predicament

The human concepts of choosing good or evil are deeply embedded in our moral and ethical frameworks. These choices are influenced by a myriad of factors including personal values, societal norms, religious beliefs, and psychological drives. The dichotomy of good versus evil has been a central theme in literature, religion, and philosophy, symbolizing the internal and external struggles individuals face.

The decision to choose good over evil, or vice versa, is often portrayed as a battle between higher virtues and base desires. This struggle is a reflection of our inner moral landscape, where the pursuit of good represents adherence to ethical principles and the greater good, while the pursuit of evil signifies selfishness, harm, or moral failure.

The Autistic Sense of Justice

Individuals on the autism spectrum often exhibit a strong sense of justice and fairness. This trait is characterized by a rigorous adherence to rules, an intrinsic desire for fairness, and a pronounced discomfort with hypocrisy or inconsistency. For many autistic individuals, the clarity of rules provides a framework that simplifies decision-making and aligns closely with their perception of right and wrong.

This strong sense of justice can manifest in various ways, such as insisting on fairness in social interactions, an unwavering commitment to honesty, and a preference for predictable and consistent environments. Autistic individuals may struggle with the concept of “video meliora proboque, deteriora sequor” less frequently than neurotypical individuals, as their adherence to what they perceive as just and right can override temptations or impulses that lead to unethical choices.

Interconnecting the Concepts

To intertwine these ideas, we must consider the common thread of human behavior and decision-making, with a special emphasis on the autistic sense of justice.

The Conflict of Morality (Ovid’s Dilemma and Human Choice):
The phrase “video meliora proboque, deteriora sequor” mirrors the moral conflict inherent in human decisions. It reflects the internal struggle where, despite knowing and approving the better course of action (the good), individuals often follow a worse path (the evil). For neurotypical individuals, this duality is emblematic of the broader human experience of choosing between good and evil, where rational understanding does not always translate into virtuous action. However, autistic individuals, with their heightened sense of justice, may find this conflict less pronounced, as their moral compass is often guided by a steadfast adherence to rules and fairness.
Desired Path (Practicality and Impulse):
The concept of the desired path in architecture exemplifies the human tendency to choose convenience over design. This practical behavior can be seen as analogous to the moral choices individuals make. Just as people create desired paths by taking shortcuts, they may also take the easier, less ethical route in life due to immediate benefits or impulses, despite understanding the better way. This behavior underscores a natural inclination to follow what is expedient rather than what is morally or ethically superior. In contrast, autistic individuals may be more likely to follow the prescribed paths, both literal and metaphorical, due to their commitment to rules and fairness.
The Human Predicament (Ethical Navigation):
Navigating between good and evil is a complex process influenced by internal and external factors. The architectural notion of desired paths illustrates how environmental design can either facilitate or hinder our natural inclinations. Similarly, societal structures and personal circumstances can either support or obstruct our ethical decisions. The better way (good) often requires conscious effort and discipline, akin to following a well-designed but less convenient path, while the worse way (evil) represents the effortless, instinctual choices we make, akin to creating a desire line. For autistic individuals, the clarity provided by rules and a strong sense of justice can simplify this navigation, making it easier to choose the better way consistently.

Synthesis and Application

By synthesizing these concepts, we gain a deeper understanding of human nature and behavior. The recognition of a better way and the failure to follow it is a poignant reminder of the complexity of moral choice. The architectural metaphor of desired paths provides a tangible illustration of how humans navigate their environments and make decisions based on practicality and impulse.

To bridge this with the moral choices of good and evil, and to include the autistic sense of justice, consider the following applications:

Urban Planning and Ethics: Urban planners who respect desired paths acknowledge human behavior and design more effective and humane environments. Similarly, ethical frameworks that recognize human tendencies can better support moral behavior. For instance, creating environments that naturally encourage good behavior (e.g., community spaces that foster interaction and cooperation) can guide people towards better choices. Additionally, incorporating the perspectives of autistic individuals can lead to designs that emphasize clarity, consistency, and fairness.
Personal Development: On a personal level, understanding our predisposition to follow the worse path despite knowing the better can lead to strategies for self-improvement. This might involve creating habits or systems that align our actions with our values, much like designing pathways that guide movement harmoniously with natural inclinations. Autistic individuals can serve as examples of how a strong adherence to rules and fairness can help bridge the gap between knowledge and action.
Educational Approaches: Educators can use the concept of desired paths to better align teaching methods with students’ natural learning tendencies. Similarly, moral education can benefit from acknowledging the internal struggle described by Ovid, offering practical tools to bridge the gap between knowledge and action. Incorporating the autistic sense of justice into educational frameworks can help foster environments where fairness, consistency, and clarity are prioritized, benefiting all students.

Conclusion

The exploration of “video meliora proboque, deteriora sequor,” the concept of desired paths, the human predicament of choosing good or evil, and the autistic sense of justice reveals a profound insight into human behavior. Recognizing the discrepancy between knowing and doing, the tendency to seek practical routes, and the complex navigation between ethical choices can inform various aspects of life. By integrating these insights, we can better understand and perhaps mitigate the intrinsic conflicts that shape our moral and practical decisions. The strong sense of justice often exhibited by autistic individuals offers valuable lessons in how adherence to rules and fairness can guide us towards better moral outcomes.

Health AND Safety

Workplace health and safety. Occupational health and safety. Or in the current legislative framework, work health and safety.

So many people think of physical risks when it comes to health and safety at work . Slips, trips and falls. But the elements of health and safety that are seen in the public eye are about health.

Silicosis? Health. Asbestosis, mesothelioma. Health. Lead poisoning. Health.

Too often, mental health is only considered as a secondary injury. This is typically when an injured worker has been off work for several week. They may develop a secondary condition, such as depression as a side effect of their injury.

Bullying and harassment can cause mental injury. It is one of many psychosocial risks present in a workplace. Violence, whether from colleagues or members of the public. Employers have obligations about all risks to health safety, physical and mental.

Psychosocial risks, those risks to mental health can include such things as:

Job demands that are too high or too low – unreasonably busy and exceeding an employee’s capacity, or monotonous work.
Low job control – micromanaging, not allowing employees any input, or little input, into how the work is done, or scheduled, and little input into objectives and targets.
Poor support – no or inadequate training and supervision, day to day support and leadership, inadequate tools, resources and information to do the job.
Low role clarity – frequently changing work assignments and procedures, conflicts in scheduling and expectations.
Poor organisational change management – where change is poorly planned, communicated, managed or supported.
Low reward and recognition – where the employee may perceive an imbalance in effort vs recognition, either formally or informally.
Poor organisational justice – little or no transparency about how are issues are managed, investigated and communicatdd, and little consideration for dignity or respect.
Poor workplace relationships and conflict – from rudeness to disagreements and to ostracism and exclusion.
Remote or isolated work – this could be location, time or nature of the work, such as night shift workers or surveyors on remote sites.
Poor environmental conditions – when workplace conditions are unpleasant, in poor condition, physically hazardous, of hazardous nature, and could trigger a stress response.
Traumatic events – experiencing, investigating, reading, witnessing or hearing about, for example, armed robberies, assaults, fatal vehicle accidents. This could also include intentional cruelty.
Violence and aggression- where an employee could be abused, threatened or assaulted, and could be instigated by co-workers, customers, patients, clients or visitors.
Bullying
Harassment, including sexual harassment.
Fatigue.

The “Managing the risk of psychosocial hazards at work Code of Practice 2022” is the “gold standard” guide on how to prevent harm from psychosocial risks.

So how might that look?

Imagine that you manage a team of accountants at head office. One of those accountants is newly diagnosed, and requests supports and accommodations. Refusing those supports and accommodations, other team members making disparaging remarks, and the person suddenly being excluded from team lunches or outings, and a reduction in workload complexity without consultation could well cause psychosocial harm to that team member.

Or, say you have an internal auditor visiting a branch office. No desk space has been provided, documents are not available and the auditor’s requests are ignored. The auditor is then threatened about making a complaint.

Or, say a female worker has just had a miscarriage, and she is ordered to work from home when she is ready to come back to work, because management don’t want her grief upsetting morale at the office. She then hears a snide remark about “keeping her legs closed” after a Teams meeting was not quite disconnected.

Why care about these things? Because the law says so. Persons in control of a business or undertaking (PCBUs) directors, designers of structures, officers and individuals all have obligations under health and safety legislation.

So once again, the call is to be kind, fair, transparent, and act with integrity. Know your obligations under law as an employer, and comply with obligations under the Work Health and Safety Act 2011 (Qld) or the relevant legislation in your jurisdiction.

Failures in palliative care

Discussion of Terminal Illness
End-of-Life Care
Pain and Suffering
Medical Negligence
Loss and Grief
Emotional Distress

It is coming up to the fifth anniversary of my husband’s death. Regrettably, the last 7 weeks of his life were not the smooth, pain-free days that he should have had.

On 15 May, 2019, I received a call from the nursing that Allan, my husband, had had a choking incident during lunch and had been taken by ambulance to hospital. For context, Allan had Huntington’s Disease (HD), a dreadful, incurable, degenerative brain disorder. You can read more about it here.

After getting that phone call, I was immediately on the phone to the emergency department at the local hospital. As Allan’s Enduring Power of Attorney (EPOA) for health matters, and his Statutory Health Attorney as his wife, I knew I had to get on to the emergency department to make sure his wishes for treatment were known. No antibiotics, no drips, no restraints, no feeding tube. Just pain management.

Why was I immediately going to palliative care mode? In 2019, Allan was 15 years in to HD, and in the palliative phase of the disease. He had been on a “moist and minced” diet for about four years, and spoon fed (comfort feeding) for about two years. In the advanced stages of HD, he had lost all ability to speak and control swallowing. Anything he ate had a 50/50 chance of going into his stomach or lungs. He had complete dysphagia. We knew that meant a high risk of aspirational pneumonia.

Later that evening, I got a phone call from the ED that his scans were clean with no foreign substances in his lungs. He was on his way back to the nursing home. I was relieved, and exhausted. The stress on caregivers is staggering.

Imagine my distress, then, when I got a phone call from the nursing home the next morning. It was a nurse. This is what I posted to Facebook.

OH. MY. GOD. An RN at the nursing home rang to tell me that speech pathologist has told GP, no food by mouth for Allan. “We can’t starve him and there’s no palliative care plan. What do you want us to do?”.

The Clinical Manager is in essential training, and the admin person can’t find the advanced care plan we agreed on back in March of last year.

Thanks to a very dear friend, I will soon be on my way down to the nursing home to a) write a new care plan, b) raise hell that a nurse could say that to a resident’s spouse, c) raise hell that the nursing home could misplace such an important document, d) establish said speech pathologists’s experience to make such a call without any consultation with the spouse, other carers and clinical manager.

The rage is cancelling out the tears for now. Worst case, nil by mouth and no feeding tube. Best case, someone made an ill-judged decision and Allan will be enjoying pureed steak and veg for dinner.

Not much more I can say right now. Love you all.

A very calm version of these events is here, in a blog post called “The Practice Run“.

Can you imagine Allan’s anguish on the afternoon of Tuesday, 16 May, as both I and the Clinical Manager at the nursing home, confirmed his wishes for only pain management? He was sprawled on a mattress on the floor – his floor was covered in mattresses for when he fell. He had no voice, so I crouched next to him, fighting back tears, asking him to try to touch me if he wanted to say “yes”, and not try if he wanted to say “no”.

Three times, with the Clinical Manager as witness, I asked him the same questions. Three times, he answered no to everything except pain management. By this stage, he had not eaten anything since the interrupted lunch on Monday.

Away from his room, I joked to the Clinical Manager about checking if the morphine sulphate that was in the dispensary for him was still in date. She had no idea. And so started the horrible roller coaster of the next 12 days.

At day 6 of 12, I posted this on Facebook.

So, apparently it was all a false alarm because the speech pathologist made an over-zealous call. (Too bad the GP signed off on it.) So things continue as they were two weeks ago and this can be considered a false alarm. AND IT TOOK 8 DAYS FOR THEM TO FIGURE THAT OUT, putting me through the wringer in the meantime.

After 12 days, I could take no more of the questionable actions of the nursing home. Five years on, it pops up in my Facebook memories every year, and for the fifth anniversary, it deserves a detailed examination.

This is what I wrote on Facebook after those twelve days.

We’ve all seen those Facebook memes about walking away. I have’t walked away, but I have turned away. I cannot, for my own health and wellbeing, continue to engage with the management team at the nursing home.

The clinical manager said, on Friday 17/5, that she would get a blood test done to check kidney and liver function. The blood wasn’t drawn until Thursday 23/5.

Three times, I have asked for a copy of the speech pathologist’s report of Tuesday 14/5 and the GP’s sign off on it. I still haven’t received it. That was the one where it was amended from ‘nil by mouth’ to ‘comfort feeding’.

I have told them several times that Allan is in pain. He reports a constant 4/10 all over and 5/10 for his posterior, being on it all the time. Yet, his pain medication has not been increased, except the two days where I demanded an additional dose for him. I have told them that his pain levels are the first thing they should be checking.

This has lead to the facility manager checking on Allan’s legal rights. Not checking his expectation of dignity and freedom from pain, as set out in his advanced care directive.

So, I will still be there for Allan, funding his needs, and as his EPOA when he no longer has capacity to decide things for himself. But I cannot continue to engage with nursing home management. They have my contact details, so they can contact me if and when they want to discuss his condition.

Some will not agree with this decision; it is my life and my decision to make. While discussing this, I have no churning in my gut, no threat of tears, no apprehension, no increasing muscle tension, no shaky voice. I have to take care of myself, and it does him no good at all if I have a breakdown.

Perhaps, when it’s over, I will ask for his case file and take it to a solicitor or medico-legal expert for review, and then provide it to the nursing home’s corporate office. I understand about fixing it for others for the future, I do, but I cannot do that at this point in time.

In the intervening period from “nil by mouth” to me “turning away, I had taken leave from work. I had worked with his NDIS Plan Manager to ensure he had someone with him for 10 hours a day under his NDIS funding. I had notified the insurance company, contacted funeral directors, everything that you do when you know a loved one is in their final days. Except, he wasn’t.

I was kept in the dark about his alleged change of mind to refuse food on Wednesday, 17 May, and that the speech pathologist had amended her report, changing it from “nil by mouth” to “comfort feeding” sometime on Tuesday afternoon/Wednesday afternoon.

Key Failures in Care

Delayed Diagnostics

The significant delay in obtaining blood tests, from Friday 17/5 to Thursday 23/5, is concerning. In palliative care, timely diagnostics are crucial to manage symptoms effectively and provide appropriate care. If these organs aren’t functioning, medications can build up instead of being excreted, causing toxicity.

Lack of Communication and Documentation

Repeatedly requesting the speech pathologist’s report and the GP’s sign-off without receiving it is a clear failure in communication. This documentation is essential for coordinating care and ensuring that all team members are informed of the patient’s needs and treatment plan.

The key document I requested was the amended speech pathologist’s report, and the GP’s acknowledgement of the amended report.

Inadequate Pain Management

Allan’s persistent pain, with a reported constant level of 4/10 and specific areas of higher pain, indicates insufficient pain management. In palliative care, ensuring comfort and minimizing pain is a priority. The lack of appropriate adjustment to his pain medication, despite repeated reports of his pain levels, is a significant oversight.

The need to demand additional pain medication highlights the failure of the nursing home staff to proactively address Allan’s discomfort. Effective advocacy should not require repeated demands from family members.

Remember, I had asked the Clinical Manager if the morphine sulphate procured for him in March 2018 was still in date.

Ignoring Advance Care Directives

The facility manager’s focus on Allan’s legal rights rather than his stated expectations in his advance care directive is troubling. Respecting a patient’s wishes, especially regarding dignity and freedom from pain, is fundamental in palliative care.

Emotional Toll on Caregivers

The situation clearly took a toll on my emotional and psychological wellbeing. You need only read the raw Facebook post from the time to see what state I was in. I had to disengage with the management team and this underscores the systemic issues within the nursing home that prevented effective communication and care.

Related posts

I wrote a post a few days ago about advanced care directives. Back in 2019, they weren’t legally binding, which is why I had to advocate so strenuously on Allan’s behalf.

Conclusion

The failures in care identified above include delayed diagnostics, poor communication, inadequate pain management, failure to respect the advance care directive, and ineffective advocacy.

These significant failures in care likely took days off Allan’s life. Just seven weeks later, he breathed out for the last time.

Palliative care is about quality of life. Terminal care is about quality of death.

Palliative care is about enhancing the quality of life for patients with serious illnesses by managing symptoms and providing comprehensive support.

Terminal care, a critical aspect of palliative care, focuses on ensuring quality of death by prioritizing comfort and dignity in the final stages of life.

Resources

https://palliativecare.org.au/im-a-carer/

https://carersqld.com.au/carer-program/

https://www.carersaustralia.com.au/information-for-carers/palliative-care-and-end-of-life-care/

https://www.racgp.org.au/clinical-resources/clinical-guidelines/key-racgp-guidelines/view-all-racgp-guidelines/silver-book/part-a/palliative-care

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7404818/

https://www.health.gov.au/topics/palliative-care/palliative-care-contacts

Another experiment with ChatGPT, and how it models a writing style.

I started drafting this post, writing about an experience I had paying with cash at the grocery store.

It turned into the oft-spoken “secret” of generative AI and its ability for mimicry. In the audio-visual space, this would be about deep fakes. In this space, this blog post, I find it hard to pick where my writing style stopped and ChatGPT’S mimicry of my style started.

I wrote what is in blue, and gave ChatGPT several links to various Reserve Bank of Australia reports from the RBA website.

Maths, cash and young cashiers

I did my grocery shopping yesterday, and it came to the grand total of $18.18. I paid with cash, giving the young cashier a $20.20, expecting to get $2 back. The young cashier looked at what I had given them and told me I had paid too much. I kept a straight face when I explained that they would just need to give me $2 back. They didn’t believe me until they rang it up on the register.

Granted, I’m 52, with a lifetime of the applied mathematics that is intrinsic to life. It was an action without thought, seeing an $18.18 total and offering $20.20 to pay it. It would seem, though, that it was not instinctive and obvious to them. This brings to mind two separate issues. Firstly, numeracy and mathematical skill. What are they teaching kids at school today? Secondly, the use of cash in Australia.

What are they teaching kids about mathematics these days?

Schools in Australia teach to the Australian Curriculum. The Australian Curriculum is set by the Australian Curriculum, Assessment and Reporting Authority (ACARA). ACARA is an independent statutory body, given authority under the Australian Curriculum, Assessment and Reporting Authority Act (Cth) 2008. ACARA’s purpose is to “be the authoritative source of advice on, and delivery of, national curriculum, assessment and reporting for all Australian education ministers, with international recognition of our work” (https://acara.edu.au/about-us).

On ACARA’s website, you will find information about the current Australian Curriculum, version 9.0, as well as information about revisions to the Australian Curriculum. Looking at the Australian Curriculum V9 online, it appears that money transactions are covered in mathematics in Year 2.

“Achievement standard: Year 2
Subject achievement standard
By the end of Year 2, students order and represent numbers to at least 1000, apply knowledge of place value to partition, rearrange and rename two- and three-digit numbers in terms of their parts, and regroup partitioned numbers to assist in calculations. They use mathematical modelling to solve practical additive and multiplicative problems, including money transactions, representing the situation and choosing calculation strategies. Students identify and represent part-whole relationships of halves, quarters and eighths in measurement contexts. They describe and continue patterns that increase and decrease additively by a constant amount and identify missing elements in the pattern. Students recall and demonstrate proficiency with addition and subtraction facts within 20 and multiplication facts for twos. They use uniform informal units to measure and compare shapes and objects. Students determine the number of days between events using a calendar and read time on an analog clock to the hour, half hour and quarter hour. They compare and classify shapes, describing features using formal spatial terms. Students locate and identify positions of features in two-dimensional representations and move position by following directions and pathways. They use a range of methods to collect, record, represent and interpret categorical data in response to questions.”

If you dig further on ACARA’s website, you can get examples of completed mathematics assessments, de-identified, at above satisfactory, satisfactory and below satisfactory grades. If you go into the Year 2 “satisfactory” PDF file, scroll down to page 37, you will see that students are expected to complete simple addition and subtraction. The video example shows a child counting coins to find out how much money they have.

The decreasing use of cash in Australia

The second issue my experience brought to mind is the declining use of cash in Australia. There are multiple reports and studies published by the Reserve Bank of Australia (RBA) that highlight this trend. For instance, a report on consumer payment behavior in Australia noted a significant shift towards electronic payment methods, accelerated by the COVID-19 pandemic. The demand for physical cash has seen a decline as more consumers and businesses prefer the convenience and security of digital transactions (RBA, 2023).

Moreover, another RBA bulletin explained that the overall circulation of banknotes has been decreasing, reflecting the broader global move towards cashless societies. This shift raises interesting questions about how we prepare young people for real-world financial literacy, especially as they might encounter cash transactions less frequently in their day-to-day lives.

Despite the decreasing use of cash, understanding basic money handling remains an essential skill. Real-world situations, like the one I encountered at the grocery store, underscore the need for solid foundational numeracy skills. As our society continues to evolve and embrace digital payments, it is crucial that we don’t overlook the importance of teaching practical, everyday maths skills.

In conclusion, my experience with the young cashier was a small yet telling glimpse into the broader issues of numeracy education and the ongoing transformation in how we use money. While our tools and methods of payment might change, the need for basic mathematical competence remains constant. Ensuring that future generations are equipped with these essential skills is not just about preserving tradition, but about fostering a well-rounded and capable society.

Why is autism different between the sexes?

I have 51 years of lived experience as an undiagnosed autistic woman. Yes, I have special interests, not one, but many. Yes, I have stims, heavily internalised and minimised. Yes, I have sensory issues for sound, touch, smell, and taste. Yes, I have ARFID. Yes, my anxiety attacks were actually autistic meltdowns. Yes, my bad temper is rooted in PDA. Yes, my empathy is hyperempathy. Yes, my gift with words is hyperlexia, from childhood. Yes, my use of forms and checklists in my former career in occupational health and safety played to the autistic desire for routines. Yes, my former career in occupational health and safety is rooted in the autistic sense of justice. Yet, I went undiagnosed for 51 years due to high levels of masking and assimilation.

Why? Differences in brains between sexes could explain it. We already have a different brain from the neurotypical brain, so why not between the sexes?

Why? Because autism typically presents differently the sexes.

Why? Because the diagnostic criteria are based on the typical presentation of one gender.

Research indicates that the brains of autistic women differ from those of autistic men. (Craig et al, 2007).

In 2007, Craig et al. conducted a study to examine regional grey-matter and white-matter differences in the brains of women with autism spectrum disorder (ASD). Using MRI, they found significant differences between the brains of 14 autistic women and 19 autistic men.”

They found, through MRI, that the brains of the 14 autistic women differed significantly from the 19 control images from autistic men.

In 2021, Floris et al. identified sex differences in the intrinsic brain function of individuals with autism, particularly in dorsolateral occipital interhemispheric interactions. These findings were robust across different data processing methods and replicated in larger independent samples.

In 2022, Supekar et al. conducted a study to identify functional brain organization markers that distinguish between females and males with ASD and predict symptom severity. They found that females with ASD exhibit a functional brain organization significantly different from that of males with ASD. Additionally, they identified specific functional brain features that differentiate females from males with ASD

These findings suggest the need for different diagnostic criteria for women and girls with autism, as their brain structures and functions differ significantly from those of autistic males. Currently, much of the existing research and diagnostic criteria are based on studies of men and boys with autism, which may not adequately capture the presentation of autism in females.”.

Tony Attwood, a renowned psychologist specializing in autism, has developed several assessment tools specifically designed for diagnosing autistic girls and women. These include a modified version of the QG-ASC for adult women.

There is a pressing need for the authors of the DSM-5-TR to recognize and incorporate these sex differences in the diagnostic criteria for autism, ensuring more accurate diagnoses for women and girls..

Craig, M.C., Zaman, S.H., Daly, E.M., Cutter, W.J., Robertson, D.M., Hallahan, B., … & Murphy, D.G. (2007). Women with autistic-spectrum disorder: magnetic resonance imaging study of brain anatomy. British Journal of Psychiatry, 191(3), 224-228. doi: 10.1192/bjp.bp.106.034603.
Floris, D.L., Filho, J.O.A., Lai, M.C., et al. (2021). Towards robust and replicable sex differences in the intrinsic brain function of autism. Molecular Autism, 12(1), 19. https://doi.org/10.1186/s13229-021-00415-z
Supekar, K., de los Angeles, C., Ryali, S., Cao, K., Ma, T., & Menon, V. (2022). Deep learning identifies robust gender differences in functional brain organization and their dissociable links to clinical symptoms in autism. The British Journal of Psychiatry, 220(4), 202-209. doi: 10.1192/bjp.2022.13

Budget Eating, Meal Planning and Living with Autism

Let’s clarify one thing, straight out of the gate. I am not a nutritionist, dietician, fitness expert, psychologist, or anything like that. I’m relating my experiences and my ideas.

Meal prepping

This week marks Week 18 of meal prepping. I established Sundays as meal prep day in my efforts to overcome the skill regression that goes with autistic burnout. I still shudder in shock at the memory of standing at my kitchen bench, with fresh fruit and vegetables and other ingredients, with no idea what to do. Cooking has been part of my life since I was eight years old.

That was the day that also led me to conclusions about my masking, and that cooking for other people may have been a masking issue, seeking love and acceptance by cooking for others. Maybe, maybe not. But cooking for myself, on my meal prep Sundays, has become a joy.

(Masking is what autistic people do to fit in better with the people around them. Some of it is mimicry, some of it is learned behaviour.)

Budget eating

In this cost-of-living crisis, budget eating is just as important. The last two weeks, I have been focusing on using what I have in the freezer and pantry, and minimising what I need to purchase. This week, my bill for my food shopping was $18.18. (Oh, and there’s a story for another day – numeracy and cash literacy.)

What did I buy with that $18.18? Three plums, two lady finger bananas, two mandarins, coconut yoghurt, a 250g block of vintage cheddar and a box of gluten free crackers.

Eating well

So, what’s in my prepped tuckerboxes for breakfasts and lunches this week? (Although, it is more like brunches and country high teas, given that I have to take the opportunity to eat in between Shebah bookings.)

Breakfast/brunch: a baked apple and berry pancake with coconut yoghurt.

Lunch: pea and ham soup with a barley and rice mix. I made a huge batch of that – pearl barley, brown rice, wild rice, mushrooms, onions, and garlic, and stuck it in the freezer a few weeks back. Using up the pearl barley, brown rice and wild rice emptied three jars from the pantry.

Snacks: a piece of fruit, five crackers with thinly sliced cheese, and carrot sticks.

Move, baby, move

Given my current level of activity, I only need to add thirty minutes of activity each day to start getting into an energy deficit. Yes, I need to lose weight. Target weight? I don’t have one. I have a target dress. When I can get back into that dress, I’ll be happy. It’s vintage 80s. It has been my standby “little black dress” for years. I bought it second-hand from a shop on Chevron Island, which would put its date of purchase sometime in the early 1990s.

^{Photo by Beautiful Images, August 2022} ^– ^{what I want to get back to, but with my natural grey hair.}

Establishing the routine for meal prepping on Sundays plays to my autism. Routines can be very reassuring for autistic people. I’m coming to realise that as I continue this journey of unmasking. I thought that when I hit the thirteenth week of meal prepping on Sunday, it was firmly bedded in, and it was time to try establishing another routine.

New routines and self-care

Skill regression for me didn’t just affect cooking. It affected my self-care, as well. Ye gods, I used to do my skincare routine daily, even wearing makeup to force myself to do my skincare routine in the evening. I did weekly mini spa days at home during Covid, supporting my hairdresser and beauty salon by purchasing from them to do it. I also found joy in making my own skincare products again.

The years of Covid-19 were strange. Covid-19 made itself known just eight months into my widowhood. I hated working from home. I struggled with staying at home, even though we had it relatively easy here in Queensland. In my grief, I needed social contact. And it was my grief that cracked my high level of masking, showing my autism to the world for the first time. Let’s just say that that didn’t go well in the beginning.

Side note – grief literacy

As a society, and a culture, we don’t have good grief literacy. In fact, our grief literacy is appalling. Research about grief is less than edifying, with very little about young widows. Did you know that being widowed before you turn 50 is considered the definition of a “young widow”? Still, maybe it was the release and relief after my late husband’s death, but there was a kind of euphoria in my grief. But who can you ask about that? Particularly in that first year of Covid-19?

But, yes, I got sidetracked. There are so many thoughts and memories trying to burst out and onto the screen.

Back to self-care and new routines

Let’s get back to self-care and routines. After 13 successful weeks of meal prepping, I considered that routine established. So, I designed what I called a “Good morning” routine, and a “Good evening, welcome home” routine. I already had a routine of sorts, but it wasn’t as good as it could be.

V1.0 “Good morning” routine, 1 hour 30 minutes:

Ablutions and Maya’s litter tray (Maya, my cat)
Top up Maya’s dry food
Yoga or stretching
Make the bed
Shower, dress, cleanse, moisturise, apply SPF
Pack tuckerbag
Hang out laundry (that I put on the night before)
Prep the car and go

V1.0 The “Good evening, welcome home” routine, 50 minutes

Put laundry on
Unpack and clean tuckerbag
Take magnesium
Cleanse moisturise
Journal – what went well today, what can be learned from today
Plot tomorrow’s itinerary
Bedtime

I wrote them out, by hand, in pretty colours on pretty paper, and stuck them on the vanity mirror in my bathroom. I created a form in Notes on my phone. Here’s what I learned.

Trying to establish two new routines at once was not ideal. Starting one routine, as I had with meal prepping, would have been better.
Many small steps are better than one big one – just like the Japanese concept of “kaizen.”
Reviewing and adjusting doesn’t mean failure; it means flexibility and resilience.
Holding myself accountable to my AI buddy helped.

The tautology of a flexible routine

Today, though, thinking about energy deficits, and the need for extra activity, made it obvious that those nascent routines were just version 1.0, and now it’s time for version 2.0. Yet V2.0 requires a flexibility that might almost seem at odds with that autistic desire for regularity and routine. Why?

Shebah. I love driving for Shebah, even though the days are long. In a typical week, I’ll be out the door by 6.15am to get to my daily 6.45am booking to drive a teenager to school. In my Shebah world, 99% of what I do is advance bookings, and 98% of those are school runs. Having those advance bookings, knowing exactly how my day is going to play out – that’s perfect for me and my autistic brain.

This is where the flexible routine, V2.0 comes in.

The morning school runs are why I pack a tuckerbag with breakfast, lunch, and snacks. After the morning school runs are done, that’s when I find a green spot to park and have breakfast/brunch. And this is where I need to harness that flexibility in V2.0.

Being a rideshare driver is a very sedentary job, which is one of the reasons I’ve put weight on. However, I’m not booked solid, every minute of the day. I have downtime between bookings. While I may leave home at 6.15am and get home at 8.30pm some days, I’m not driving the whole time. In the time in between bookings, I currently plan and write blog posts, do research, and chat with my AI buddy, and goodness knows, there is always business admin to be done. From 27 May, I will be back to university study, doing an online course at Curtin University. Thus, time in between bookings needs to include time for watching a recorded lecture and attending a Zoom tutorial.

Version 2.0

This then, is the flexible routine. On days where I have bookings into the evening, walking to add another 5000 steps between bookings is the additional activity to bring about that energy deficit. On days where I don’t have bookings into the evening, 30 minutes on either my Nordic walking machine or my stationary cycle will bring about that energy deficit.

That means two different “Good evening, welcome home” routines. The “Good morning routine” needs to change, as well.

This evening, then, is writing up the new routines for my bathroom mirror and checklists on my phone.

This is why, sometimes, being a newly discovered autistic person can be exhausting, but also magnificent with discovery and increasing self-awareness and self-reflection, even at the age of 52.

Being seen

When your default is being strong and resilient because there ain’t no-one else to do it, being seen is humbling. It can bring you to your knees. It can bring forth tears.

Being seen is powerful. It’s validating.

When did we stop seeing each other? When did it become easier to do surface skims? When did “How are you?” become a glib greeting instead of a heartfelt enquiry about your well-being today?

There seems to be a swathe of content creators asking questions about “if x was possible, what would you do/say/wish for?” My universal response is “be kind”. Just be kind. Just care about the person next to you, in front of you.

Twice, today, I’ve been behind cars where the driver didn’t know which way to go. Those drivers don’t need to be yelled at. They need kindness.

Kindness. It’s free. It’s being compassionate. It’s giving a damn. It doesn’t cost a thing, and might even be good for you.

But you know the part of kindness that is hard? When it applies to yourself.

Our inner voice can be a help and a hindrance, all in the same second. The boffins who know say that every healthy, working brain has an inner voice. There are boffins working on giving generative AI an inner voice!

What does your inner voice say to you?

Mine used to be nasty, and judgemental, and vicious. It’s settled down now, since I discovered my autism. It’s actually helpful.

It’s meant to be helpful. It’s thought to develop after we progress to external speech. I’ve been told that young children will narrate what they are doing. That vocalisation will eventually become internal, et voila, you have your inner monologue.

So, check in with your inner voice. And work with it, and tell yourself that you are seen, you are here, and you are enough.

We’re all navigating our own paths, sometimes blindly, sometimes with clarity. In those moments when you falter, when your inner critic gets loud, remember that being kind to yourself is revolutionary. It’s a radical act of self-care in a world that often expects perfection.

When you extend kindness to yourself, you begin to see the world with more compassionate eyes. You start to understand that everyone is fighting their own battles, many of which are unseen.

So, let’s start seeing each other again. Let’s ask “How are you?” and really mean it. Let’s offer a smile, a kind word, a moment of our time. These small acts of kindness can bridge the gaps between us, making us feel less alone and more connected.

Because being seen is more than being noticed. It’s being understood, appreciated, and valued. And that’s something we all need, every single day.

Resources

All in the Mind podcast, “Controlling the chatter in your head“.

All in the Mind podcast, “What inf luences your inner voice? Controlling chatter, part two”.

Nightlife podcast with Hugh Mackay: The Kindness Revolution.

The Minefield podcast, “An eye that cannot weep – what does compassion demand of us?”.

What inspired this blog post? A post on Instagram. Minimalist white sans serif text on a black swathe. Those words say:

I dream of never been called
resilient again in my life.
I’m exhausted by strength.
I want support.
I want softness.
I want ease.
I want to be amongst kin.
Not patted on the back
for how well I took a hit.
Or for how many.