Changes of Plans

Well, I was thinking to do some further study to keep my brain occupied.

BUT my idea to take some classes in rock mineralogy or pavement engineering to further my knowledge in areas which would be useful for my work was not exactly met with enthusiasm by my bosses. As a consequence, my motivation levels dropped off.

So, stuff it, I’ve signed up for something completely different and will be formalising all my hobby research on autism by studying a Graduate Certificate in Autism Studies. This is offered online by Griffith Uni – and I think it will be fun.

Also, I’m joining a local choir – which will also be fun. I hope. Having no idea what my singing range is, I’ve been tentatively placed in second sopranos (whatever that means).

Hope you’re all doing some fun stuff too! I will keep you posted…

Healthy Diet Warning – Oxalates

Looks like I might be going on yet another diet – but before you accuse me of faddy eating let me explain!

I’ve been having some health issues which are looking increasingly like there might be an auto-immune issue – but haven’t yet become quite sick enough for doctors to order comprehensive testing that might get me a diagnosis. So I’m stuck trying to manage it myself with lifestyle and diet interventions.

The keto diet worked pretty well for a while but is rather extreme (very low carb, high fat) and possibly contributed to adrenal fatigue. After that, recognising there was something going on with the immune system, I tried what I thought was a healthy, anti-inflammatory and high-nutrition diet. Basically I cut out most processed food and I ate more greens, berries and nuts.

The above ‘healthy’ diet worked well for me in many ways: it was easy, included lots of tasty foods, and I’ve had fair energy levels and mental stability (yay!). But in other ways my health seems to have declined, and I developed a few issues:

• episodes of kidney pain and borderline low kidney function
• swollen thyroid gland and borderline low thyroid hormones
• headaches
• pain in toe joints
• odd rashes

In trying to find out what was wrong, I came across these things called oxalates. Apparently, these are produced by plants as defence against being eaten. They form a variety of spiky crystal shapes, and if significant quantities get absorbed through the gut wall into the blood, they cause all kinds of trouble. For instance, according to what I’ve read, they can:

• accumulate in the kidneys and cause kidney stones,
• cause a kind of gout in the joints,
• deplete calcium and magnesium from bones and tissues, and
• the body’s attempt to attack them can possibly trigger auto-immune thyroid disease.

Found in certain green veggies, nuts and seeds, berries, tea and chocolate (all my latest go-to foods!), I’m thinking they may be the culprit.

Surface of kidney stone

So I’m sending out this warning to others out there who are on ‘healthy’ diets with abundant plant foods and ‘superfoods’: watch out for the oxalates in those chia seeds, almonds and spinach smoothies!

There are lists available online and in books to guide you on oxalate contents of foods. Some examples of high oxalate foods include:

• spinach and chard
• rhubarb
• almonds (including almond meal & almond milk)
• nuts in general
• cocoa and dark chocolate (alas!)
• many spices (turmeric, cinnamon, black pepper, fenugreek)
• parsley and chives
• certain fruits (e.g. blackberries, kiwis, figs, star fruit)
• tea
• sweet potatoes

It seems that, for some vegetables such as carrots, celery, broccoli and peas, oxalates can be high in raw form but tend to reduce somewhat when well-cooked.

Something to watch out for also is that oxalates absorption increases when taken in liquid form. So some of the worst offenders causing oxalate overload are green smoothies, nut or soy milks, and/or multiple cups of tea (again, alas!).

Anyhow, below is my new diet plan to reduce oxalate loads. If you are thinking to copy this, please be aware I am not an expert in low oxalate diets, I have just cobbled this plan together from a bit of reading over the last few days. So I take no responsibility for any effects whatsoever!

But I may share with you later how it pans out. Willpower permitting!

Hello 2024, please be kind

It’s that time of year for taking a retrospective and making resolutions. I don’t normally do that because I don’t think I have ever, in my life, stuck to a New Year’s Resolution. Seems safer not to make promises I can’t keep, right?

But it did get me thinking about what has happened on the personal front in 2023, and what I would like to happen in 2024. Here are a few thoughts:

Highlight of the year was the trip to the UK with the kids. Got to see my brother, dad and stepmum and do all the sights and museums in London. That was great.

Lowlights of the year were getting ill straight after the above, continuing to have mental health difficulties, and getting in trouble at work – which situation I am still trying to resolve, hopefully without losing my job.

I seem to be coming out of 2023 with a general feeling of unhappiness. It’s not just personal issues, the state of the world and society and everything just seems bad right now, and getting worse, is that just me or do you feel that too? There are so many pressures on all of us that there is little opportunity to be kind and caring to each other. Well, that’s how it feels.

So my big wish for 2024 is just for a gentler and more considerate world.

Wishes on the personal front? Rather than make resolutions about big achievements, I’m trying to keep things realistic within current limitations posed by health and work/ financial imperatives. So I’m setting modest goals more about maintaining a minimum level of life satisfaction until I get some improvement on those fronts. What I am aiming to do:

• help son and daughter with getting jobs and driving licences
• keep steady at work and see if I can regain bosses confidence – if not, seek other work
• maintain good diet and exercise and sleep habits to help with mental and physical health
• Go visit mum in New Zealand
• write some short stories or book chapters
• read and review some books

Here’s hoping for better things in 2024!

ASD and the Education of Medical Professionals

So, my workplace asked for a report from my treating medical practitioner. To cut a long story short, I’ve been having episodes of illness and they wanted to know that I was well enough to do my job. On the face of it, perhaps a reasonable request.

And yet, so problematic.

It’s not only me. Getting appropriate medical advice and care is a HUGE issue for autistic adults. Even when we are seemingly highly-functional, fully-verbal individuals with jobs and houses and families – this remains an intractable problem for many of us. Here, I’m going to try and explain why that is.

From my employer’s point of view, it was reasonable to request a report from my treating medical practitioner after I was ill. However, it was a request underpinned by the following assumptions:

• (1) my condition would not affect my ability to access and communicate effectively with medical professionals;
• (2) my condition would be recognised and appropriately diagnosed by the doctors I am able to access;
• (3) the doctor should be considered the expert, whose opinion on treatment and management outweighs mine as the patient.

It is a regrettable fact that, due to inadequacies in the education of medical professionals with respect to autism spectrum disorders, none of those assumptions are necessarily correct – and taking them to be so could be harmful. Not just could be. I fear that assumptions like these are, right now, actively causing harm to autistic adults and children.

I’m not against the medical profession, by the way. Doctors in general are incredibly smart and deeply caring people who want the best for their patients (❤ to you all!) The issue is that they’re placed in the impossible situation of feeling pressured to provide diagnoses and advice to people with a condition they have likely received little training to recognise, and perhaps none to manage or treat – at least in adults.

But I’m getting ahead of myself. Let’s start with assumption (1):

Access and Communication

First off, booking an appointment with the GP can be a hurdle in itself – because it requires a phone call. Gah, no! OK, some may be fine with this, but others like me will only manage it after a lot of self-persuasion, and a few will just not even make the attempt and choose to live with whatever ails them until it gets severe enough to land them in a critical condition in hospital. Unfortunately, I am not kidding.

Then there’s the GP waiting room – which can be problematic for reasons that are hard to explain. I guess there’s something about being stuck for an indefinite period with a group of strangers in an echoing, barren room under clinical lights awaiting a difficult conversation? It’s a combo designed to freak out anyone, let alone someone with ASD.

And the actual conversation with the doctor IS always difficult. It’s like being in a foreign country, trying to explain your illness to someone who speaks another language. We get tripped up by taking their questions too literally (when you ask how long have I had this, do you mean how long since I noticed something amiss, or how long has it been intense enough to come see you, and do you include a few times when the feeling went away or I didn’t notice? What if I can’t remember the exact date it started?…) We get confused by having to describe feelings and pain levels (in a scale of 1 to 10? Relative to what? Bad enough that I braved the phone and the waiting room to be here, but not as bad as having a leg crushed in a car accident so… a five? Six?). Then with the stress and nerves of the whole situation causing us to grin or laugh while trying to explain our physical/mental agony, is it any wonder we get misunderstood?

Recognition and Diagnosis

The poor doctor now has to work out which of your symptoms are a part of your autism and which are something else. This is assuming that both of you are aware that you have ASD (which is not a given, considering the number of undiagnosed adults floating around).

Even if you are both aware of the autism, there is so much ignorance of the ways in which that can present, many of the things we commonly experience are seen as symptoms of mental illness or personality disorder. Even if the doctor has received training, it was likely specific to children and they may not recognise autistic traits in adults. Instead, there’s a high probability of coming out of the appointment with a mental health diagnosis. Take your pick:

• pathological avoidance of social events – social anxiety disorder?
• seem not interested in others – schizoid personality disorder?
• seem to be self-absorbed – narcissistic personality disorder?
• problems with executive function and attention – ADHD?
• over-emotional and unstable – borderline personality disorder?
• mood fluctuations – bipolar disorder? Cyclothymia?
• monotone voice and flat affect – depression?
• seem constantly nervous – generalised anxiety disorder?
• having stress reactions and meltdowns – adjustment disorder? PTSD? psychosis?

The fact is, what little training that doctors do receive on autism (even the psychiatrists to whom we are often sent) rarely covers the full range of our experience. For instance, even now, autistic meltdowns and burnouts remain medically unrecognised. Unbelievable, right? How can something so central to the autistic experience still be a medical unknown? Few medical professionals would be aware that ALL of the above “symptoms” can result from having an autistic brain and nervous system.

Management and Treatment

Having received a diagnosis, the expectation of an employer would be that one follows medical advice in managing and treating the condition. You can see the problem here, can’t you?

Firstly, there are no medications available to treat the core symptoms of autism. None at all.

Few doctors will admit this. Rightly or wrongly, they are determined to help you by trying you on whatever medication they think may be beneficial – and if that fails, by trying something else. And we have to comply, don’t we? Having been (perhaps incorrectly) diagnosed with a mental illness, the expectation of the doctor and the employer who requested the report is that we comply with the recommended medication regime.

Chances are, we’re going to come out of that appointment with a prescription for something like:

• an antidepressant such as an SSRI or SNRI
• an antipsychotic such as risperidone or aripiprazole
• a mood stabiliser such as lithium or lamotrigine
• a stimulant such as methylphenidate (Ritalin) or amphetamine (Adderall)
• a benzodiazepine sedative such as diazepam

None of these are without side-effects, some are addictive, and some can be dangerous if not carefully controlled. Even SSRIs, which seem to be generally regarded as harmless (and doled out by doctors like sweets, in my experience) can cause horrible withdrawal symptoms if you don’t taper off. So you don’t want to be taking any of these unnecessarily.

My Experience

Well, it was frustrating and stressful.

My employer wanted my treating medical practitioner to complete a report, so I went to my GP. Being sensible, and recognising that she knew very little about ASD, my GP demurred and referred me to a psychiatrist instead. There followed a 3-month wait for the psychiatric appointment, during which I was not allowed to undertake any fieldwork (cutting out half my normal work) due to not yet having the medical clearance.

I finally arrived at the psychiatrist wracked by nerves over whether or not I would get the clearance, and hence was immediately offered the opinion that I had an anxiety disorder. It was suggested that I take an antidepressant. Or had I considered risperidone? (This was without me requesting any kind of medication at all – I just wanted the report completed). She indicated she did not wish to complete the report.

Trying not to cry in frustration, I booked a second appointment to give it another go. That time, the psychiatrist seemed a little more willing to listen to my symptoms, however was quick to dismiss autism as an explanation and seemed determined to squeeze them into mental illness boxes. For instance, what I had been thinking were autistic meltdowns she first called panic attacks, then after I explained what they actually felt like, conceded that they were something else. I ended up with a diagnosis of Adjustment Disorder (fluctuating) along with Generalised Anxiety Disorder. (And there I was, thinking I was having an autistic burnout).

But to end on good news, she did finally agree to complete the report for my work. So I guess that all worked out.

(If you discount the 4 months of stress trying to get the report… and the doctors having no understanding of ASD… and nearly ending up back on antidepressants or on antipsychotics… and being diagnosed with two mental illnesses on top of my autism. Yay).

But seriously, if someone like me – a reasonably competent and verbal adult – is having issues being understood by medical professionals, how bad must it be for others? For the kids and the non-verbal autistics, and those with intellectual disabilities? That is the real concern. How many autistics are there on a cocktail of inappropriate medication, simply from having their symptoms misunderstood?

Review of Black Blood and Stone

Review of Black Blood and Stone (The Drachen Warriors – Book 1) by Alyson Walton

This is a great debut fantasy novel. The plot proceeds at a cracking pace, and there are original elements to this world which defy easy categorisation. For a self-published novel it is also beautifully presented and edited, with striking cover art and wonderful maps.     

In this book, there are feuding provinces and a scheming Emperor, all unaware that they will soon face a greater threat from an ancient evil. Drachen Warriors are contracted to the provinces to help fight off orcan attacks and protect against sabres. With the rise of the Dragon Priests, however, the Drachen “heathens” have become mistrusted and feared, the general populace ignorant of their historical calling and the true nature of their tattoos.

The Regent of Stonehill Hold still respects the old traditions, even entrusting the Drachen with the protection of his daughter. For her part, though more at home practicing with the sword than the needle, Ravyn has developed a strong sense of duty. With her father lacking a male heir, and the notion of a female Regent inconceivable, it seems there is no choice but to be married off to the Emperor’s favourite.

It is not long before expectations are shattered and Ravyn finds herself following a very different path, one which will affect the fate of all.

This was an enthralling read; it’s easy to get drawn into this world. The character Ravyn is a confounding mix of naivety, vulnerability, ferocity, and unyielding determination. The Drachen warriors are also fascinating – more powerful and with a deeper purpose than immediately apparent, yet facing an uncertain future with dwindling numbers and increasing hostility from the people they are sworn to protect.

Though not a short novel, and filled with momentous events, it feels like the story is just beginning. I want to know what happens next!

I Watch South Korean Serials Because…

They’re great!

I’m going to share with you some that I’ve enjoyed. You can probably see why these particular ones appealed to me – three feature an autistic character, one a humanoid robot, and one an aspiring author. Haha, yeah. But they’re all so well done, you might enjoy them also (they’re all on Netflix).

I watched some a while back so can’t remember much of the plot so I’m just going to give you a sentence or two to give the gist of what I remember and why I liked them.

The Good Doctor

The Korean – and original – version of The Good Doctor is, in my opinion far superior to the US version (which I find cringey).

The young autistic savant trying to become a surgeon seems human and relatable, and I liked the way it illustrated his relationship issues while still allowing a touching romance to develop. The underlying political tensions in the hospital were also gripping and provided a cohesive story arc across episodes.

Are You Human?

Only for those who enjoy silly robot stories! A boy is removed from his mother by a powerful grandfather, so she constructs a human-like robot in his image. An elaborate – and completely implausible – plot sees the robot standing in for the human to survive corporation power games.

I enjoyed seeing the lead actor playing two contrasting characters – and the designer clothes were pretty cool too.

Move To Heaven

This has a unique premise of a company providing cleaning services for those who have passed away.

The quiet and sensitive young man doing the cleaning finds himself under the guardianship of his scoundrel uncle. I was touched at times by the way the youngster brought closure to the relatives of the deceased each episode, while the question of whether Uncle could reform himself provided series continuity.

Extraordinary Attorney Woo

An autistic young woman with amazing memory tries to make her way as a lawyer.

This has a fun and light-hearted feel while also touching on the workplace struggles of autistics. A moment when her father explains how it felt when his daughter was unable to get a job for 6 months despite getting top grades moved me, and the way in which she was undermined by a colleague who was jealous of her skills struck a chord also.

Miraculous Brothers

I’m still watching this series but enjoying it so far. There’s a completely implausible – yet remarkably gripping – plot involving a boy travelling through time and publication of a stolen manuscript which turns out to reveal a true crime committed 27 years before.

I was particularly struck by the emotional range and complexity of the aspiring author character, and the developing friendship with the boy is also well done.

Would love to read your own thoughts on these or other Korean dramas, feel free to share in the comments.

Feel-Good Cyberpunk? The Murderbot Diaries

I wanted to introduce you to a favourite book series, that’s The Murderbot Diaries by Martha Wells.

Not sure why it’s taken me so long to get around to this post, as I love reading and re-reading these books, they’re my go-to when I just want to relax with something familiar.

Starting with “All Systems Red”, there’s a series of four novellas, followed by two full-length novels, and another book in the series due out in November.

Why am I calling it “feel-good cyberpunk”? Mainly I was inspired by the last meeting in our local Spec Fic writers group, which was taking about all the punk genres (cyberpunk, steampunk, atompunk, cattlepunk – which I’d never heard of but apparently is a wild west sci fi combo). We were told that the punk genres always involve resistance against an authority or the status quo.

The “cyber” in this case is obvious because the protagonist Secunit (aka Murderbot) is a bot-human construct. Think a mix of cloned human and artificial parts, with the strength and indestructability of a machine but all the angst of a human. No, more than that, all the angst of something with a human brain which is treated as (and has no more rights than) a piece of equipment.

The punk element in the series is resistance against corporations. In this universe, corporations have unchecked powers to engage in profiteering at the expense of their (virtually) indentured labour force and anyone else who gets in their way. So basically, a perfectly understandable type of villainy to anyone alive in the 21st century western capitalist world.

The feel-good factor comes from the wonderful (old-style, conflicted superhero) way in which Secunit, despite claiming to care nothing for humans, always ends up rescuing all the good guys and saving the day. Can’t ask for more than that.

Martha Wells also has some great fantasy novels out there, you might like to check out her latest “Witch King” which I’m currently reading, or the Raksura series. Enjoy!

Autism, Cortisol, Immune Disorders and Diet

I’m feeling like my previous 2 posts may have been rather negative. Were they too negative? If so, I apologise. In my defense, I’ve been a bit ill and my mood was off for a while there. Feeling more myself now.

In the process of being ill, and being at home with time to google my symptoms, I actually found out some very interesting medical stuff. And several things I’d read about just linked together in my head, in one of those lightbulb moments. Eureka! as they say.

I really want to share this in case it helps anyone. This post is not entirely established science, it is me interpreting and extrapolating from things I’ve read, with a hefty dose of subjectivity from my own experience, so treat with caution/skepticism, OK? But do please read on if you are:

• On the autism spectrum – this one is mainly for you
• On a long-term ketogenic diet – as there’s something here you need to know
• None of the above but you are (i) interested in medical stuff / the human body, or (ii) always read my blog no matter what, or (iii) my Mum. Although I might even give (ii) and (iii) a pass to ignore this one.

Autism and Cortisol

It is said that autism is a difference in brain wiring. This is only half the truth. It fails to recognise that the neurons and synapses of our nervous system extend beyond our brains.

So I’ve talked before about the autonomic nervous system (ANS) – because mine seems to be faulty. Sometimes it seems there is an imbalance between my sympathetic nervous system (fight or flight mode) and my parasympathetic (rest and digest). I’ve discovered you can track this with a fitness tracker which measures heart rate variability (HRV).

I can’t tell you what a healthy HRV is because there are different ways of measuring it and everyone has their own level of normal. For me, when I’m healthy and my nervous system is on balance, my fitbit gives me an overnight HRV in the 25-35 ms range. If it drops to 20-25 range, the fight-or-flight mode has been left on too long and I should rest or de-stress in some way to reset my nervous system. If it drops below 20, I’m probably ill – or will become so if I’m stupid enough to get out of bed.

Where does cortisol come into this?

Quoting from my quick internet search: “Cortisol is a steroid hormone that is produced by your 2 adrenal glands, which sit on top of each kidney. When you are stressed, increased cortisol is released into your bloodstream.”. So cortisol is usually associated with activation of the sympathetic nervous system.

The body has a feedback loop called the hypothalamic-pituitary axis (HPA) which is supposed to keep cortisol at the right level. In most people, there is a diurnal pattern of cortisol levels with the highest around the time you get up in the morning followed by a decline throughout the day, plus some variations due to daily stresses.

Quoting again “Having the right cortisol balance is essential for your health, and producing too much or too little cortisol can cause health problems”. High cortisol leads to Cushing’s syndrome and low cortisol to Addison’s disease – but I’m not going to talk about those here. What I’m talking about is more subtle imbalances.

So for instance, there’s been a few studies taking cortisol measurements in people on the autism spectrum. Not many studies and not many people, but the results seem to indicate that cortisol levels may generally be off. It’s possible that (some) autistics may have lower than normal cortisol levels in the morning, making them less prepared to deal with daily stresses. It’s also possible that when a stress does cause cortisol to rise, the level stays high for too long. Hence the autistic person may continue in the fight-or-flight mode for an extended period.

It seems to me that if those studies are correct and if my cortisol levels are off, it would explain a lot of the issues I have with my nervous system. It could be a partial explanation for autistic meltdowns also, if you consider what might happen if you place stress on a person whose body is completely unprepared to take that stress? And/or if you continue to place stress on a person whose body has not yet recovered from previous daily stresses?

I wonder also if there might be a connection between autistic burnout and adrenal fatigue? Imagine a person getting stuck for long periods in fight-or-flight mode by cortisol levels which are staying high for too long. It wouldn’t be surprising if days or weeks of demand on the adrenals led them to crash and cortisol levels drop too low for the person to function properly.

Seems like we have a way to go to fully understand the connection between autism and cortisol or endocrine dysfunction but I think the common factor may be imbalances in the nervous system.

(To see how your own nervous system is going, I recommend measuring your HRV).

Cortisol and Immune Disorders

One of the things that cortisol does is suppress the immune system. That is why if your immune system malfunctions by causing severe inflammation or autoimmune disease, one of the first options for doctors is to prescribe a corticosteroid such as prednisolone. The corticosteroid will suppress your immune system and thereby dampen any inflammation.

The downside to corticosteroid drugs is that, while the effect is powerful and you may feel great while taking them, they are destroying your body. Amongst other side effects, they may raise your blood pressure and blood sugar, and your bones and joints get damaged. So you can only take them for a short course.

Once the course is over, if your immune dysfunction continues, inflammation will flare back up. There can be a rebound effect also, from your body being accustomed to the extra cortisol and then having it removed. So for instance people who have used steroid creams long term for eczema can get a terrible rash all over, worse than the original eczema, once they stop.

The purpose of the above is just to make clear the powerful effects that cortisol has on the body, and that imbalanced cortisol levels can be associated with immune system dysregulation.

Recent papers have also indicated possible immune system dysregulation amongst autistic children. Immune system issues can include the following (I copied this from https://autism.org/immune-system-function-autism/):

• Immune deficiency / dysfunction: defective or ineffective response
• Hypersensitivity: over-reaction to innocuous foreign material, out of proportion to the potential damage (allergy)
• Autoimmunity: inappropriate reaction towards self, loss of self-recognition
• Inflammation: too-vigorous attack against invaders with ‘bystander’ damage to normal tissue

Children with autism have been shown to have increased incidence of gastrointestinal tract (GI) disorders. Once you understand the immune dysregulation that makes sense. Even if the precise nature of the GI issue can (and does) vary between autistics, many are related to the immune system, including: food sensitivities, allergies, celiac disease, and IBD such as Chrohn’s disease or Ulcerative Colitis.

Immune Disorders and Diet

The common question asked by those suffering from inflammatory disorders (and GI issues in particular) is “What can I eat?”.

Unfortunately, there is no one single dietary approach that will suit everyone. For GI disorders, an appropriate diet will likely involve eliminating (temporarily or permanently) certain foods that generate a reaction in the individual.

There are anti-inflammatory diets, which include plenty of colourful vegetables and fruits and whole foods, while limiting processed foods, high fat or high sugar foods, alcohol, and so on. If you have a GI disorder, though, elimination of particular problem foods will take precedence. So for instance, you may find that you are unable to tolerate ‘healthy’ dietary options such as: whole grains, cruciferous vegetables, tomatoes or seeded fruit, apples, or probiotics.

DO NOT trust anyone who believes all autistics with GI issues should be on a gluten-free and casein-free (GF/CF) diet. This is bunk, there is no scientific basis at all. Some may be intolerant to gluten and/or casein, true, but many may have other GI issues. The reason why so many autistic children do better on this diet is that removal of wheat and dairy helps with other issues also, such as lactose intolerance, wheat allergy, intolerance of fibre or lectins, and/or it has removed a whole load of ultra-processed junk food from their diet.

Oh, I had to come back and edit because I forgot something… another diet sometimes adopted for autism is the Specific Carbohydrate Diet (SCD) or a variant called the GAPS (Gut and Psychology Syndrome) Diet. I need to warn you about these because they are highly restrictive. I tried transitioning from keto to SCD and couldn’t do it, I just got crazy hungry. Although the keto diet is very low carb, the fat and protein levels keep you satisfied, whereas SCD is both low carb and low or moderate fat. If you want to try these diets you need to be really careful that you are getting everything your body needs, and I would be cautious putting a growing child on them.

Finally, for those who have made it this far, I have a warning about following the ketogenic (keto) diet long-term. As you may know, I’m a fan of the keto diet. Running on ketones instead of glucose made me feel better – it levelled my mood and cleared my head, and it didn’t seem to aggravate GI issues for a long time. But I think I may have stayed on it for too long.

What I now know is that the high fat and protein levels in the diet make it inflammatory. By forcing your body to produce glucose from protein by gluconeogenesis, it places stress on your body and increases cortisol levels. You need to regularly come off the diet (say within 4-6 months) to give your body a break and avoid adrenal fatigue.

To be clear, I’m not blaming keto for my recent illness, which comprised an unexpected allergic reaction (when I had no allergies before), followed by a systemic inflammatory response which has been simmering along for the last 4 weeks. (Just getting over it now). I think the cause was a combination of factors, including a recent viral illness and, perhaps, my pre-existing nervous system / endocrine imbalance (possibly exacerbated by post-keto adrenal fatigue) which may have led to an immune malfunction – a combination of factors which inspired this post.

Any thoughts or comments?

Why the Low Self Esteem Thing is not Universal

Here I’m following up my yesterday’s post.

It occurred to me that some people may be thinking “not every autistic has low self esteem, so it can’t be an autistic thing, it’s just you, Kay.”

Nope, it’s not just me, it’s very common. I agree it’s not universal though, so perhaps I can give some examples to explain why. Or give you my personal take on the reasons, anyway.

Example 1. Let’s take for example a real person you may have heard of: Stephen Wiltshire. He is an amazingly talented artist who can draw entire cityscapes from memory. It’s absolutely mind-blowing, please check out his work. I hope Stephen will forgive me if I get this wrong, but I understand he is semi-verbal and obviously autistic, so he couldn’t hide that even if he wanted to. But does it matter? Because of his talent, he is still able to contribute greatly to society and nobody expects him to be anyone other than who he is.

[Though I’m going to add here, I can understand he might get incredibly frustrated with people who dismiss his worth on the basis that he is a savant with this god-given ability which comes to him like magic (without years of dedicated practice). Idiots.]

Example 2. I’m thinking here of some young autistics (usually men) I’ve seen on TV on shows such as “Love On The Spectrum”. They’ve grown up having therapy or coaching in speech and/or behaviour and have absorbed the concept that their autism is a disability not a personal flaw. Based on their experiences as a child, it may seem that there will be help and opportunities in life despite or because of ASD.

Example 3. Imagine a person, it could be anyone, your neighbour or colleague or cousin. This person has no special abilities and might be considered a little odd. You may see them as awkward, or abrasive, or aloof, or self-absorbed. They may or may not have been formally diagnosed autistic. Regardless, what you don’t see is the effort they are putting in to stay afloat in a world based on neurotypical expectations, where (for them) everything is just that little bit more uncomfortable or overwhelming or simply, in various ways, difficult than you might think.

I put it to you that, regardless of their individual personalities, levels of optimism or resilience or whatever else, some of the autistics in these examples are more likely to have self-esteem issues than others. It depends on their accumulated life experiences, situation, and whether they are able to meet their own and others’ expectations.

Unpacking the Low Self-Esteem Thing

I’ve been on holiday, it was fun. Will post pics at some point, honest. Just haven’t uploaded them yet.

Anyhow, I was just thinking about why I have issues with low self-esteem and wondering if it was an autistic thing and why and whether I could explain it. Because I haven’t seen anybody do that. Maybe that’s why autistic burnout is only recognised amongst autistics – because we know how our lives are difficult but we never properly explain it to anyone else?

Well, it’s late and I should be going to bed… so instead I’m going to give this a crack. Might be a bit rough and ready, OK?

Obviously I can only speak for my own experience here, and I’m kind of assuming other autistics may have similar, but it’s hard to tell. (See above, we rarely try to openly explain this).

And a lot of non-autistics are going to recognise these thoughts/experiences also but I have to ask you kindly to accept that although these may be common to humanity in general, the degree and impact on autistics is somehow worse. I can’t always explain why these things are more difficult for us, but have been forced to conclude that they truly are.

So… I guess the day starts with a little bit of conditioned anxiety. Because I know what I’m like and all the things I’m going to struggle with and all the things I’m going to get wrong and I don’t really want to face it. But I can get past that because I have a mental schedule – I need to get up when the alarm rings, eat breakfast, get dressed, get in the car, etc etc. I just follow the routine. (Is this why schedules are important for autistics? I don’t know).

Now if I’m going out, the main problem is that there are people. Don’t get me wrong, I love people. All of you! (OK, nearly all of you). And I actually have something I would like to talk about with someone. But wow, people-land is so confusing. Even now, after more than 50 years on Earth, I really don’t get it.

See, there are all these faces and some of them I’ve seen before and I kind of know roughly who they are but I can never remember their name in the moment. I don’t know why or even if that’s an autism thing or just a me thing. So if they speak to me I’m embarrassed from the get-go, trying to remember their name or where I met them before or whatever.

Some are strangers and that’s just freakin scary, right, because how are you supposed to behave around people you’ve never met before? So I avert my eyes and don’t look at them so there’s no chance of having to interact. And sometimes it turns out to be someone I know and I just walked right past and ignored them so I’ve been rude. Damn it.

But never mind, I navigate to the person who I know best and whose name I (usually) remember and if I’m on the ball I might say good morning or whatever greeting is appropriate. Then if I’m feeling brave I might decide to broach the thing I wanted to talk about.

But this is actually really tricky. Because you see, there are all these rules around the topics you are allowed to talk about and the appropriate way to talk about them, depending on your relationship to the other person. So I have to decide whether this person fits best in the box of a colleague or an acquaintance or a friend, and how close a friend they are, and whether they are senior or junior to me, or in a position of authority and expecting a certain level of deference, and on top of that, whether they are likely to be receptive, or uninterested, or too busy, or dealing with their own issues, or whatever. It’s a minefield, honestly. So I’m probably a tad hesitant, while I try to work all of that out and figure out the appropriate mode of saying the thing I wanted to say.

Yeah no, I have no idea why I can’t just learn how to interact with people and then remember it automatically. It’s just an autistic thing, OK? It seems like every time I end up trying to work it out all over.

In the meantime, my very good colleague/acquaintance/friend/person who I dearly like has decided to make conversation and is telling me something about their weekend/daughter/dog. This throws me for a loop because I have this sticky brain issue that makes it hard to switch track from thinking-about-what-I-was-going-to-say to listening-to-what-other-person-is-saying-and-reacting-appropriately. But I do my best and maybe some of their words get past the auditory processing block and I get the gist of it and realise it is quite amusing and manage to smile to show I got it. Maybe I succeed in an appropriate response also. Go me!

But here’s the thing about conversation, it’s not just one comment on one topic that you can think about for a while and come back later with a response. No! Now the person is saying something else to me and the topic has shifted slightly and it’s not amusing anymore but getting a bit deeper and don’t get me wrong I love deep conversation, I crave that sort of connection with people I really do. But for some reason my brain has decided nope, this is too much input too fast and is imploding. Like just kerblam! Overwhelm central, sirens going off, emergency shutdown imminent, got to get out of this situation NOW.

At this point I have most likely just turned away from the person and got intently absorbed in something else, like whatever is in reach that I can play with or whatever pretty object happens to be in sight. (Come to think, I sometimes have coffee with friends and do fairly decent conversation as long as I have in my hands a well-constructed coffee cup that takes a while to pull apart). But that’s not the norm, usually the implosion is more complete and spells the end of any attempts at conversation, plus leaves me feeling like I’ve been really rude, and not being able to apologise for being rude on account of no longer being capable of speech.

By now I might be a quarter through my day and already feeling stupid, embarrassed, tired, and generally upset with myself. And this kind of situation happens every day in every situation with people in it, in people-land. To state the obvious, those feelings are not conducive to generating a healthy level of self-esteem.

There’s another option, which is staying at home. A lot of autistics go with this one, but nope, not for me. I think too much. No, that’s not quite right. I obsess. Like something comes into my head and I start thinking about it and I try to work out every angle and every “what if…” and I turn it over in my mind over and over and over on constant repeat and I can’t seem to stop. OMG it’s exhausting. And in someone whose thoughts tend to gravitate towards all the things I am failing at, extremely unhealthy. Hello, anxiety and depression.

No, I’ll take people-land, thank you. Even if I get stuck with the whole interaction bit, at least I can sort of hang around and listen to other people and get out of my head for a while. You guys make me feel better, you really do.

But yeah, I get tired and after a while I sort of burn out in some way. I might go sort of quiet and stop trying to interact with people for days at a time. Or if it’s worse than that I might have to stay home for a while and not go out. And when it gets really bad I can’t even do stuff at home and am limited to lying around for 3 days watching Netflix. Or I might get frustrated with myself and force myself to get up and do something and then I will actually get ill.

In case you were wondering, burnout is also great for self-esteem. For destroying it, that is.

So yeah, there you have it, welcome to the joys of being autistic.