Category: It’s My Life

Osteopaths, hypermobility and autism

Oh, the autistic trepidation about “new”; in this case, the trepidation of finding a new health care provider. Understanding my autism means I understand  better why seeing a new practitioner seeds nervousness.

Osteopath,  physiotherapist or chiropractor?

All my life,  I’ve chosen alternative health care providers; naturopaths, herbalists, massage therapists, and  Reiki. I’ve studied Western herbal medicine,  massage,  aromatherapy,  and had a (somewhat disastrous) Reiki attunement to Level 2 – that’s a story for another day.

Once I was making decisions for myself,  leaving childhood behind,  chiropractors quite literally had my back. One, whom I saw for several years,  even even commented on my “loose-limbed” walk; possibly the first identification of hypermobility, all the way back in the early 1990s.

It was in the mid 2000s when I moved away from chiropractors,  going to osteopaths instead. 

What’s the difference? And why not physiotherapists?

Physiotherapists generally treat and rehabilitate injuries.

Chiropractors generally focus on the spine,  the protector of the central nervous system.

Osteopaths generally focus on whole of body, prevention and rehabilitation.

These days,  knowing about my autism and the associated hypermobility means that I need a whole of body focus. Hence,  finding a new osteopath.

But why did I need to find a new osteopath? That’s also a story for another day.

Empathy in practitioners

The first new osteopath seemed okay, but he didn’t look any further into what hypermobility meant in terms of injury treatment.  He also said,  “Freak”. He didn’t say it in an unkind way or context.  He was asking how my hypermobility manifested.  I mentioned my knees,  my feet,  and my hands as my known hypermobility, and showed him my hand spread,  the hypermobility that let me span an octave in a piano when I was nine years old.  His smiling response – “Freak”. Choice of words in a health care setting should be carefully considered.

I continued with the appointment,  and we resolved the immediate issue in my lower back, but he wasn’t a keeper.

I got to thinking. While I couldn’t find my old osteopath,  his clinic was still there,  they still had my patient records, and he had hired/ placed the other osteopaths there. So,  I made an appointment at the old osteopath’s clinic.

This new-to-me osteopath, Alison, is a keeper.  So, back to the clinic at New Farm, with an osteopath who has experience with autistic and hypermobile patients.

Why did I need to see an osteopath?

Firstly,  discovering my autism has been a blessing; discovering the associated hypermobility has been a curse.

It is thought that 60-70% of autistic people also have hypermobility, and like autism, hypermobility is different in every person. For me, my knees bend backwards,  my fingers bend backwards and the top joints of my fingers can lock. My hands, that take an “S” sized glove,  can span 20cms from thumb to little finger.  That’s my known hypermobility.

Intersect that with a deep dive into autistic hypermobility, and being aware that I’m 52, and wanting to improve mobility, flexibility, agility, and strength as I age. I started a program of daily workout routines, and knowing that I had an exaggerated curve in my lower back, that was one area of was focussing on. I was also focussing on reducing the chronic tension in my body. 

I was ecstatic when I went from being able to fit my fist between my lower back and the wall, to only being able to fit my flat palm with a slight tilt between my back and the wall. My everyday motion was freeing up, and walking felt good. I was progressing reps and weights in my daily workouts, and six weeks, I was really feeling good.

One night,  I went to sleep, in my typical autistic side sleeper posture. I woke up, sprawled in what I now know is a hypermobile sprawl, and a very cranky lower back. Old friends L4 and L5 were very unhappy. My entire lower back from ribs to tailbone had locked up and I was in pain.

I did some stretching and movements, and that got the pain manageable. Heat, magnesium cream, and specific rest postures helped. But I needed more help than that.

Hence, the search for a new osteopath.

The inception of a new autistic special interest

Hence, the search for information about why, and the subsequent deep dive into hypermobility.

Hypermobility is a disorder of connective tissues. Some would consider connective tissues to be ligaments and tendons; they are that, and so much more.

Connective tissue is cartilage, bones,  fibres such as collagen and elastin, adipose tissue (yes, fat), blood and fibroblasts, the cells that activate for tissue healing and wound repair.

So hypermobility is not just a disorder of ligaments and tendons. It has the potential to affect the whole body.

I know a lady with Ehlers-Danlos Syndrome (hEDS). For her, it caused devastation, with nine miscarriages for two live births.

People with hEDS generally  have the super flexy, bendy bodies. An ignorant massage therapist can inadvertantly dislocate a shoulder during a massage. For my friend,  it meant the disorder of the connective tissues presented in her uterus, with devastating consequences.

So it makes me wonder, just how much the undisguised hypermobility has impacted my life. It makes me wonder what the links are between hypermobility and hormones, postural orthostatic tachycardia syndrome (POTS), adrenal fatigue, and mast cell activation syndrome (MCAS)? Is there a link to estrogen dominance and fibroids? And is there really a difference between Hypermobility Spectrum Disorder  and Ehlers Danos Syndrome?

There is so much more to be discovered. Stay tuned.

Bibliophile to the rescue!

Eric Van Lustbader, aikido, and self.

In a previous post, I wrote about the clean start, the reset, for my workroom and bedroom.  Now the challenge is to keep that momentum going.

In my 20s, all the way back in the 1990s, I discovered Eric van Lustbader’s Nicholas Linnear novels. I was hooked. The beguiling mix of Eastern mysticism, Western pragmatism, martial arts, the corporate shenanigans, the violence; I was besotted.

Addictive personality or autistic special interest – the heartbreak of self-deprivation
One of the things that breaks my heart, that makes me grieve for my younger self, is how I denied myself things. Things, like van Lustbader’s books, because they were enthralling. I used them as a launching board to find out about so many things, including aikido. But even though they were books that I wanted to read again and again, I denied myself, because I was afraid I had an addictive personality. In reality, all I had was undiagnosed autism, and a new-found special interest.

You see, while addictive personality is not a disorder under the DSM-5-TR, it is generally used to describe a compulsive need to engage in certain behaviours or with certain substances. On the surface, that can look a lot like an autistic special interest, and an autistic special interest can look a lot like an addiction to a thing, or a compulsion.

So, imagine my confusion and dilemma, when I didn’t know I was autistic, and found things that were special interests. Imagine the autistic need, the desire, to go down that rabbit hole, and misdiagnosing yourself, from your teenage years as potentially having an addictive personality. Imagine containing yourself, depriving yourself of that joy, because you thought you may have had a mental health disorder.

One of my autistic traits is hyperlexia, a deep fascination with words and language, that often presents as early acquisition of reading and written words. I’m also a bibliophile to go with that. Books have always been my best friends. Rediscovering an old friend, hidden on a bookshelf, is a rare delight. But the books I have denied myself, because I thought I had an addictive personality… such as Dungeons and Dragons and the spinoff Dragon Lance, and Margeret Weis’s “Star of the Guardian” series. These are just the ones that have come up in conversation recently. There would be tens, hundreds of books that I read once, found utterly delightful and enthralling, that I put aside because I thought I had an addictive personality.

Part of me rages, now, and grieves, for those books that could have been lifelong special interests, maybe a missed genesis for writing fan fiction, maybe a missed opportunity to research the issues present in the books, acquiring more knowledge… so much missed that could have been so rich and satisfying.

Fast forward to today, restarts and maintenance
In thinking, though, about my issues with executive allofunction (my positive language, instead of using “dys”), and the fresh clean start of my revived workroom and bedroom, I remembered some of the principles of aikido. Dusty memories of those books by Eric van Lustbader and his character Nicholas Linnear, and the things I learned from the books about martial arts, and then went on to research.

One of those things from those books was aikido – avoid and deflect. In a lightbulb moment, I realised that that is how I could manage my executive allofunction; by avoiding and deflecting. Now, it may sound crazy to talk about managing my mind as if it’s a third party. I know it isn’t; it’s just me. It is, though, almost doing an end run around myself, or rather, knowing where the blocks are, and doing an end run around them. Avoid, and deflect.

How?
How does this work for me? Follow my mental path. This is going to be like a braid, several strands woven together and coming together at the end.

Thread 1. My good-as-brand-new workroom, I need to keep it that way. So if I also use it as my workout area, as well as my study and writing area, my collectables in display cabinets, and my sewing equipment temporarily put aside… then if I move those desks from being back to back, to being against the wall, then I have room for my exercise bike and Nordic walker. And the newly cleared drawers in the display cabinets can hold my yoga gear. Then there’s a space there for a yoga mat, and a space there for dumbbells… well, if I’m going to use that part of the room as a workout area, then I need to keep the chaise clear for a post workout transition. And given that one of my workout routines includes prone shoulder abductions, I want a clean carpet.

So cleaning isn’t a function in and of itself. It is an adjunct to my workout routines.

Thread 2. Why are workout routines so important? They’re important because I discovered I am autistic, and autism isn’t just the mind, it is the body as well. Now, I’m 52, and don’t have the “chunky” movements that some autistic people have, likely because of the “inadvertent supports” I received as a child, in ballet, speech and drama, piano and singing, and cycling, and walking and showing dogs.

However, some 60% or more of autistic people are also hypermobile. (Waving hello.) Yes, that’s me. I have hypermobile knees and hands. I’m researching the concept of “masked” hypermobility at the moment, as it may be possible that the chronic muscle tension I have is not necessarily all from the stresses of my life, but is masked hypermobility. Have my muscles tensed to stabilise hypermobile joints? That theory makes sense when I recall the time I dislocated T3 (the third vertebrae in the thoracic section of the spine) inwards. My osteopath was really scratching his head over how I did it, and how to get it back into its proper place so I could breathe properly again. My workout routines are to stabilise joints through the muscles around them. Hence, workout routines.

Thread 3. My financial situation already tells me that I’ll be renting for the rest of my life. (Because I spent nearly $300,0-00 on my late husband’s care, over and above his pension and the NDIS – Huntington’s Disease is expensive.) So, I have a plan that my retirement life will be peripatetic, calling to my ancient Romany DNA; van life, roaming around Australia. That will need strength, fitness, mobility and agility. I figure I’ve got 18 years to get ready for that. Hence, workout routines.

Thread 4. Sewing. Another special interest. But I don’t have any of my homemade garments in my wardrobe right now, because they don’t fit me at the moment. Weight loss isn’t the goal. Getting back into those dresses and skirts and blouses – that’s the goal. Hence, workout routines.

Bring all those threads together into my daily workout routines that I need to keep my workroom clean and tidy for. Avoid and deflect. I’m not cleaning. I’m making my workouts possible. Avoid the PDA, the RSD, the overwhelmed autistic freeze, the need for a body double. Avoid and deflect.

My daily workout routines – now on my fourth week.
Monday – knees and shoulders – toe raises, walking backwards, dynamic lunges, toe raises to heel lifts, static lunges, shoulder stretches, and twists

Tuesday – shoulders and arms – bent arm lateral raises, bicep curls, reverse bicep curls, hammer bicep curls, triceps curls, external and internal shoulder rotations, prone horizonal abductions, and prone lower arm raises. These have progressed from 500g weights to 2.5kg dumbbells, with sets increasing from 5 to 2 x 10.

Wednesday – hips – hip abductions, prone side leg lefts, cat/cow, hip adductions, high-kneed marching on the spot, and butterfly pose.

Thursday – core, all yoga poses – cat/cow, upward/downward dog, dead bugs, boat pose, half table pose, twisting boat, side bends, child pose.

Friday – yin yoga hip openers – sleep swan, butterfly, cat/cow, half butterfly, and a repeating flow from cat/cow to child to frog, back to child, then cat/cow

Saturday – whole of body strength – push-ups, split level lunges, squats, overhead presses, walking lunges, bent over dumbbell rows.

Sunday – gentle whole of body stretches. – marching in place, side steps, toe tape, and seated hamstring and quad stretches, seated calf and shin stretches, seated upper back and chest stretches, seated ankle rotations, wide legged forward bend, standing to raise to heel raise flow, shoulder rolls, and the weighted hula for some fun.

This is why I have been saying lately that my autism diagnosis has given me a new lease on life.

Need for cognition – by way of intrinsically motivated learners and self-directed learning

In another engagement with generative AI, I asked ChatGPT about “need for cognition as a concept to intersect with intrinsically motivated learning and self-directed learning. Why? Because I’m dissatisfied with the university experience, both on campus and remotely. But I want to learn, I need to learn. That’s the “need for cognition”, which I will consider to be part of my flavour of autism.

This is what ChatGPT had to say.

“Need for cognition” refers to an individual’s tendency to engage in and enjoy activities that require thinking, problem-solving, and understanding complex ideas. It’s a personality trait characterized by a desire for effortful cognitive activities.

While “need for cognition” is not specifically an autistic trait, some people with autism may exhibit a high need for cognition due to their intense focus on particular interests or their enjoyment of intellectual challenges. Autistic individuals often have specific areas of interest that they delve into deeply, which can align with a high need for cognition in those areas. However, this is not universal for all autistic people, as each individual’s traits and interests vary widely.

For a mature autistic woman, the intersection of need for cognition, intrinsically motivated learning, and self-directed learning can be particularly enriching and empowering. Here’s how these concepts might manifest and be beneficial:

Need for Cognition
Deep Engagement: A mature autistic woman may find deep satisfaction in activities that require intense focus and problem-solving. This can be intellectually stimulating hobbies, academic pursuits, or professional work.
Special Interests: Autistic individuals often have special interests that they explore in great depth. A high need for cognition can enhance the engagement and enjoyment derived from these interests, leading to a fulfilling and intellectually rich life.

Intrinsically Motivated Learning
Lifelong Learning: Intrinsic motivation can drive continuous learning and skill development throughout life. For a mature autistic woman, this might mean pursuing new hobbies, further education, or self-improvement activities purely for personal satisfaction.
Personal Fulfillment: Learning driven by personal interest can provide a strong sense of accomplishment and joy. This intrinsic motivation can help in maintaining mental agility and emotional well-being.

Self-Directed Learning
Autonomy: Self-directed learning aligns well with the preference for autonomy often found in autistic individuals. It allows for control over what, how, and when to learn, reducing the stress that can come from structured, externally-imposed learning environments.
Customized Learning: This approach enables tailoring learning experiences to personal needs and preferences, which can be especially important for autistic individuals who might have unique ways of processing information and engaging with content.

Practical Strategies
Identify Interests: Leveraging special interests to engage in deep, intrinsically motivated learning activities can be very rewarding. This might involve reading, research, or hands-on projects.
Set Personal Goals: Establishing clear, personal learning goals can help in structuring self-directed learning. This can include both short-term and long-term objectives related to personal and professional growth.
Seek Resources: Finding resources that cater to personal learning styles, such as online courses, books, podcasts, or workshops, can enhance the learning experience. Community groups or clubs related to specific interests can also provide social interaction and support.
Reflect and Adapt: Regularly reflecting on learning progress and adapting strategies as needed can ensure that learning remains aligned with personal interests and needs.

Benefits
Cognitive Stimulation: Engaging in intellectually challenging activities can keep the mind sharp and provide a sense of purpose and accomplishment.
Emotional Well-Being: Pursuing interests and learning for personal satisfaction can enhance overall happiness and reduce stress.
Resilience and Adaptability: Developing a habit of self-directed learning can build resilience and adaptability, important traits for navigating life’s challenges.

By understanding and harnessing these traits, a mature autistic woman can create a rich, fulfilling learning journey tailored to her unique strengths and interests.

All my life, the erroneously neurotypical life, I wanted to go to university. As a “2e” undiagnosed autistic girl, learning was incredibly fun. As a hyperlexic undiagnosed autistic girl, I read anything and everything. The 1932 edition of “Charles Mee’s Encyclopedia for Children” was rich pickings, as was the much more current World Book Encyclopedia set. If you remember that beauty, you’ll remember that the dictionary came in two volumes, A-L and M-Z. I read both volumes. University was a dream from my teenage years, and people in my life spoke of it as an unquestioned expectation. Yet, life happens, and I never made it to university. Only once I was widowed did I see the opportunity to finally go to university.

From 2022, as an undiagnosed autistic, mature age student, I struggled at university. I did well in some things, but my undiagnosed autism was a hindrance. My autism diagnosis in late 2023 was a revelatory experience. The last eight months of exploring autism, and my flavour of autism has been fascinating, and I understand myself so, so, much better. I understand the PDA (pathological demand avoidance aka perpetual drive for autonomy) and the issues it causes with assessments and due dates; the RSD (rejection sensitivity dysphoria) that is the inner child so easily hurt by a turn of the head, let alone group work issues; the gestalt learning and thinking that seems to be the antithesis of university course curricula.

My latest learning has been about “need for cognition”. I don’t care about external recognition. I just want information, not the certificate and the mortarboard. I want to learn, and engage, and synthesise. I want to come up with questions to lead me down another rabbithole. Which leads me to think that going to university is not what I actually wanted. Auditing university courses would be more my style.

Which leads me to self-directed learning, adult style.

The clever people at the Centre for Teaching Excellence at the University of Waterloo (Canada), came up with this Independent Studies: Unit Planning Decision Guide. They say that “the following questions are meant to guide you through the process of designing a “course” or unit of study. Take time to reflect on them to help create a cohesive, concrete plan.”

Now, way back in the early years of my working life, I was a workplace trainer and assessor, an old BSZ40198 Certificate IV. I wrote and delivered training courses, starting from corporate needs and working backwards to develop training material to get team members to that outcome. So, why can’t I do that for myself?

Thankfully, this unit planning decision guide is published under Creative Commons, allowing others to “remix, tweak and build upon our work non-commercially”, with the proviso of credit and an indication if changes were made. So here are my tweaks.

  1. Where are you?
    • What is your background?
    • What prior knowledge do you have of this material?
    • Where does this unit fit with your degree requirements special interests, current affairs or anything else?
    • What are your beliefs, attitudes, skills, values, and support structure, both in life and as a student?
  2. Where do you want to go?
    • What would you like to get out of this unit (knowledge and skills)?
    • What do you want to be able to do once the unit is over?
    • What will you have to know in order to do the items listed above?
  3. How will you know you got there?
    • How can you assess your learning achievements?
    • What types of evaluation methods will suit the goals you outlined for question two (e.g., essay, presentation, annotated bibliography, webpage)?
  4. How are you going to get there?What general structure of activities do you want to use? You can design your own, or use one of the following activity structures:
    • Read-write-AI chat: Sequence of reading, reflective writing, and discussion with advising faculty member AI.
    • Do/look-read-talk: Start with some field or lab work, followed by readings and discussion with advising faculty member – write-ups of experiential work can be included
    • Know-do-do: Work through a series of stages – build some background knowledge of skills, work on smaller application projects, conclude with larger, more complex project
    • Talk-read-write: Start with some intensive meetings with advising faculty member AI to discuss material, read recommended resources, prepare written work
  5. What are you going to do?
    • What specific activities will you use to attain each of the goals for question two, in keeping with the general strategy chosen?
    • Critically evaluate these activities. Is reading/writing/reflecting, etc. enough to attain the desired amount of learning?
  6. When are you going to do what?
    • Develop a week by week schedule for the whole term
    • What activities need to come first?
    • What activities do you want to conclude with?
    • What sequence makes sense for the middle?
  7. Who/what can help?
    • What resources do you need to support each of the goals listed for question two?
    • Include people, places, community, articles, media, library, and advising faculty member resources
  8. How will your work be assessed?
    • Who will do the assessing?
    • What activities will be assessed? (Not all activities may require assessment)
  9. Communicate Develop your plansIt is now time to develop your learning contract plan. A sample learning contract and tips on developing the contract are available from Centre for Teaching Excellence. The contract plan should include:
    • Goals for the unit
    • Structure and sequence of activities
    • Timeline for completion of activities
    • Details about resource materials for each goal
    • Assessment procedures
    • A section for advising faculty member AI feedback and evaluation as each goal is completed
    • May include a plan for regular meetings with advising faculty member and other unit policies, such as work turned in late
    • Once created, contracts should be assessed by the advising faculty member. What could go wrong? Is there too much or too little work? Is the timeline and evaluation reasonable?
  10. How will you know how the unit is going?
    • What kinds of feedback will you need?
    • How often should you meet with the advising faculty member?
    • What specific questions do you want answered as each goal is achieved?
    • Do some self-evaluation as you progress to help you stay focused

So there we are. Designing my own course and lesson plan, then embarking on that course, and getting ChatGPT to ‘mark’ my work. So just what might the autistic polymath with a magpie mind want to research? Oh, my, so much. In no particular order:

  • The Vienna Convention
  • Hildegarde of Bingen
  • The history of Druids
  • The history of the nations of my genetics
  • Studies on AI learning to read human minds
  • Consciousness of animals
  • Autism… of course
  • Masking hypermobility
  • Autistic bodies and exercise
  • Autistic bodies anhd nutrition
  • DNA analysis
  • Etymology
  • Aromatherapy (existing special interest)
  • The history of cooking (existing special interest)
  • 3D printing and coding (existing special interest)
  • Best practice in palliative care, terminal care
  • Grief in different cultures
  • The history of woodworking in different cultures (existing special interest)
  • Western herbal medicine (existing special interest)
  • Quantum mechanics
  • Cognitive psychology
  • Writing
  • And so, so much more.

Dancing to the beat of different drum has never been more true. My drum, my drumbeat, my dance.

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.

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 influences 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.

Hiraeth, Deverry and autism

I can’t read some fantasy books. Why? Because they are single books, or only a trilogy. I need complexity and sweeping narratives, over, say, 12 books. Like Katherine Kerr’s Deverry novels.

As a pagan, her books get me right in the heart. As an autistic person, the complexity of the SOULS of people, interacting across reincarnations, multiple lives… that complexity is just magnificent.  I have discovered that appreciation for rich, detailed, complex immersive narratives is an autistic thing. 

I dived deep into her books, jumping backwards and forwards in time, the origin story of the books; the story of Jill, Rhodri and Nevyn, souls entwined in soul contracts that must be resolved, and the extra soul contracts, the “Wyrd” of each soul that each reincarnation comes into contact with.

It’s just superb. It appeals to what I now know to be aspects and traits of my autism – the sense of justice, hyperempathy, a love of words with hyperlexia, and intense focus.

Discovering my autism at the age 51, and discovering that being autistic is why I like some things… I love my autistic brain that gave me so much when I didn’t even know its true identity; my true identity.

It’s from Katherine Kerr’s books that I learned, in the pan-Celtic language she created for the series, of “hiraedd”, of Rhodri’s desperate longing for his home, the dun of his family, and that hiraedd, embedded in his soul across lifetimes. “Hiraedd” in fictional Deverry, “hiraeth” in Welsh; the word that has no translation in English, according to the BBC.  According to this BBC article, hiraeth is:

A blend of homesickness, nostalgia and longing, “hiraeth” is a pull on the heart that conveys a distinct feeling of missing something irretrievably lost.

All through my spiritual life, in good and bad, through my late husband’s decline with Huntington’s Disease, there has been this hiraeth, a homesickness. Hiraeth, a word then a definition that made so much sense to me. Hiraeth, missing that place where I felt like I belonged.

Yet I always felt guilty of language appropriation because I’m not Welsh. Little did I know.

Hiraeth, autism and a search

I’ve written elsewhere about being autistic and where it came from, genetically. And I’ve written elsewhere about being adopted.

So, not belonging anywhere, really. Hiraeth, missing that place where I felt like I belonged.

My autistic literal thinking interpreted being adopted and not belonging anywhere as onlyness. Yes,  I have adoptive aunts and uncles and cousins, and I have biological aunts and uncles and cousins, but I don’t belong in either camp. There’s that acceptance that, yes, there are those people who have those labels, but I don’t associate those labels with me. That’s the best way I can explain it. Onlyness. My autistic brain’s desire for order led me to investigate, to find a place where I belonged.

Genetic heritage and DNA

Building my family tree in Ancestry.com was always more about where I came from, not the people along the way. So when I did the Ancestry DNA, I was super-chuffed with the results.

My DNA is similar to DNA that’s Irish, English, French, (by way of Brittany and the Channel Isles),  Welsh, and a little Scottish! (The German 4% in my DNA is, as that family will tell you,  Prussian, not German – I have mixed emotions about that… but no mixed emotions about Black Forest Gateau.)

But to know that my DNA is firmly rooted in that part of the world… my Welsh DNA says that I am not culturally or linguistically appropriating the word “hiraeth”, nor in the tenets of my eclectic spirituality and faith. Yeehah!

All of that is a really roundabout way of saying that Katherine Kerr’s Deverry books are great, and gave me insights that I then explored, and found ideas and concepts that resonated with me, and, despite feeling like I didn’t belong anywhere, my autism and my DNA tells me where I come from.

And the hiraeth that has haunted me, has abated.

Isn’t self awareness a grand thing?

Inadvertent supports in undiagnosed autism

Diagnosed as autistic at the age of 51, I still feel like an outsider in the autistic community. Not because of internalised ableism. Not because I don’t believe I’m autistic. But because I don’t see me in other late diagnosed autistic women.

Now, don’t get me wrong. I know that autism is different for every autistic person. But what if…

What if my adoptive parents inadvertently gave me supports, because of their social, cultural and aspirational expectations?

In context, my adoptive father was born in 1917. My adoptive mother was born in 1920.  He was born into a large family, already entrenched in Australia. She was born into a large family who had migrated from Scotland to Australia in the early 1910s.

They grew up during the roaring 1920s and the Great Depression. He went to war in World War II. She was a nurse caring for soldiers sent back from the Papua New Guinea and Coral Sea fronts. He had malaria. She was his nurse.

They married in 1942, and had a son, Warren, in 1947. So their child-raising experience was from the late 1940s, in a world reeling, some countries still on rations, the 1950s and the 1960s. The social expectations on young men and women were very different, compared to what they experienced growing up, to parenting their own son.

Warren, their son, died in a car accident in 1967. They adopted me five years later, as a baby, in 1972.

Here we have a couple, still grieving their son, and maybe determined not to make the same mistakes, to do better. Their idea of a well-behaved young lady was shaped by what they experienced, themselves, as children, and in bringing up Warren. The 1920s, the 1950s and the 1970s, all coming together in that home at that time. Coming together at that time and centred on an autistic girl, in a time when autism was barely recognised in boys, let alone girls.

I have a strong suspicion, a hypothesis, if you will, that their ideas about what a young lady needed to know were actually inadvertent supports for their autistic daughter.

From the age of about 4 to 13, I attended ballet classes, speech and drama classes, piano lessons and singing lessons.

Were 1970s speech and drama classes and singing a good substitute for the speech pathology of today?

Were 1970s ballet classes and piano a good substitute for the occupational and physical therapy of today?

Did their expectation of raising a young lady with grace, poise and refinement actually help their undiagnosed autistic daughter with social skills, communication, coordination and emotional expression?

ChatGPT’s perspective

Engaging in activities like ballet, speech and drama, piano, and singing could have provided valuable benefits to girls with undiagnosed autism across different time periods, including the 1800s to the 1990s. Here’s how:

Structured Routine: The structured nature of these activities could have provided a sense of predictability and routine, which can be comforting and beneficial for individuals with autism who often thrive in structured environments.

Sensory Integration: Many autistic individuals experience sensory sensitivities or differences. Activities like ballet and music can help with sensory integration, providing opportunities to explore and manage sensory inputs in a controlled setting.

Social Skills Development: While the social expectations may have varied depending on the time period, engaging in group activities like ballet or drama would have still provided opportunities for social interaction, turn-taking, following instructions, and working collaboratively—all of which are important social skills.

Emotional Expression: Creative activities such as singing, piano, and drama allow for emotional expression in a safe and supportive environment. This can be especially beneficial for individuals with autism who may struggle with verbal communication or expressing emotions.

Self-Confidence: Mastery of skills in these activities can boost self-esteem and confidence, providing a sense of accomplishment and identity outside of potential social challenges.

While these activities might not have been specifically tailored for autism support, their inherent structure, sensory components, social interactions, and emotional outlets could have indeed provided meaningful support and development for girls with undiagnosed autism during those times.

I would also add competing in the local eisteddfod – in speech and drama, singing and piano – for several years as a self-esteem and confidence booster.

So despite all the difficulties my adoptive parents had, and the intergenerational issues we had, did they accidentally, inadvertently, do the best things possible at the time for the daughter that they didn’t know was autistic?

If so, way back in the 1800s, or even earlier, in English society, did the social mores of the time, for boys and girls, inadvertently give support to people with autistic brains, even though we didn’t know about autism back then?

Is modern society making it harder to be autistic than ever before?

Why Shebah?

I often get asked why I drive for Shebah, instead of the other rideshare companies. Why? Because Shebah. Rideshare for women, by women. 

Shebah started in 2017, with a focus on safe personal transport for women and children. It also empowers us a drivers. We can choose when we want to work, and what bookings we want to accept. We are not penalised for not accepting a booking. Shebah creates female empowerment through that, and by paying 85% of the fare.

My personal ethos – every drive is a safe and secure trip for my passengers, without fear of harm or harassment. This goes both ways.  It’s better for me,  as a driver, and it’s better for my passengers.

Driving for Shebah is the most fulfilling work I’ve ever done. I value the rapport I build with my regular passengers. I value the conversations with one-off passengers. Everyone has a story.

Good stories and bad stories

The good stories I hear – about school days and assignments, sporting achievements, weekend plans, interests and hobbies.

I’ve done exam coaching and cramming, brainstormed ideas for essays, discussed concepts the teenage passengers have had trouble with, teasing out for critical review and analysis.

Here’s an example from last night. This was for a young Grade 7 girl,  from school to her sport. It’s week 4 in term 2, so I always know that assignments will be due soon, and exam block is coming up. I ask about assignments and what they’re working on. This young lady had an assignment to deepen the “no” argument about egg farms. I asked for her thoughts, and in her reply, she mentioned things that she had seen in activists’ videos.

I asked if she had ever been to an egg farm, and if she knew that there was an egg farm less than 10kms away. She was interested in seeing one for herself.

In a short, 10 minute drive, we covered that English assignment, shared acquaintances, and her sport.

Why Shebah? For parents, knowing that drivers have “blue cards” (Positive Notice for Child Related Employment), gives them reassurance for their child, travelling alone, with a stranger. Our bread and butter is school drop offs and pick-ups for other people’s children, often the same children ever day, every week. We’re not strangers for long.

Bad stories

In any group of women, ask, and you’ll find that most have had a bad experience as a passenger. Hence, Shebah.

For example, the 23yo women with severe disabilities who needed help getting her seatbelt done up, only to have the male driver get a bit handsy, and then remind this vulnerable passenger that he knew where she lived. We will ask if you need help, and that help will be respectful. Hence Shebah.

For example, the 21yo model whose male driver started driving in the opposite direction to her destination. We will NEVER do that, unless we know about a road closure or other issue. Hence Shebah.

For example, the male driver who drove two 15yo girls to a party, who kept asking if they’d like to go to another party with him when this party was finished. We will never do that. But we will ask if these girls have their return journey sorted, because we are worried about their safety. Hence Shebah.

For example, the deaf 17yo boy who was punched by the driver because he wouldn’t answer his questions. We will accept boys as passengers until they turn 18. Hence Shebah.

For example, the male driver who was so incensed at my continued refusal to go for drinks with him, he ran a red light on a busy road. That was in 2018; I registered as a Shebah passenger the next day.  I registered as a driver in 2021.

Bears and men

There has been quite a conversation recently, about whether women would rather come across a bear or a stranger, male, in the forest. I think the examples above would give some, small example why women are saying, “bear”, and why having a rideshare service like Shebah is invaluable.

Living my values

It is all those reasons, and many, many more, why I love driving for Shebah. Safety, security and 85% of the fare.

Footnote – yes, I am registered with Uber and Didi, as a means to an end. If I’m not going to make my daily revenue target, then I log into one of the other rideshare platforms to make up the balance.

That’s why… Shebah.