The Autism Schism: On causes, cures, and a divided community

April is “autism awareness month”, or better still, “autism acceptance month”, so today is my last opportunity to post a contribution. I do have an idea I want to express but no plan of how to express it, so I’m going to wing it.

This is going to be more of an essay than a blog post. Basically, I intend to touch on the causes of autism, the reason there is no cure, and the schism between the parents of severely autistic children and the autistic adults advocating for neurodiversity – all in one very long post because in my view, they are all connected. (I’ll try not to ramble too much!)

This is all my own opinion. It’s based on a lot of reading on the topic – but I’m not going to provide references; this is not a scientific paper! You are free to disagree.

What is Autism, really?

Well, it’s complicated.

The first thing to understand is that autism is not a disease but a developmental difference. Unlike contagious diseases, there is no single cause and it is present from birth.

Everyone gets the concept of congenital differences such as a club foot or hare lip. But autism is more complicated still. While autism is often referred to as a neurological difference, that can be misleading, as it’s not a single neurological disorder either. Autism is actually a set of common behavioural issues, related to differences in brain development, which occur as a consequence of a neurological problem.

There are actually a variety of problems which can occur in the way neurons communicate with each other. It could be that developing neurons grow too fast or too densely in various brain regions, are affected by changes in the supporting environment (glial cells) or by neurochemical imbalances affecting the synapses. The brain tries to compensate for these various neurological problems by developing in a way that is different from the usual. This developmental difference can later be recognised (through observation of a person’s behavioural challenges) as coming under the umbrella of the autism spectrum.

To summarise: autism is not a single neurological disorder, but a common developmental trajectory of a brain and nervous system which functions differently from the usual. Or:

Various neurological problems –> developmental differences –> common pattern of behavioural issues = autism

This concept is crucial to understanding the rest of this post, as you will see.

Autism Causes

Firstly, when we are talking about what causes autism, we are really referring to the causes of the underlying neurological problem(s). Immediately it is clear that there could be many problems with many causes.

Through studies of twins and families, scientists have identified that genetics factor strongly but environment also plays a role. Again, it’s complicated. Let’s break it down:

  1. Sometimes autism occurs spontaneously in a family with no history, through “denovo” (new) gene mutations.
  2. The environment of previous generations plays a role, as toxin exposures in the father could lead to damaged sperm, and toxin exposures in the maternal grandmother while pregnant could lead to damaged ova in the mother. A link has been established, for example, between autism risk and paternal age – as an older father is more likely to carry mutations in his sperm.
  3. Sometimes a faulty gene or chromosomal abnormalities are already present in parents and directly inherited. This may be the case for certain disorders such as Rett Syndrome and Fragile X Syndrome.
  4. In many cases, no single faulty gene can be identified, instead it is the combination of multiple genes that results in high “polygenic risk”. Between a hundred and a thousand genes are suspected to have links with autism. Fun fact: many of the genes linked to high intelligence also contribute to autism polygenic risk – hence why Asperger’s is known as the Engineer’s disease. (Perhaps this is indicative of a neurology that is stretched to its physio-chemical limits, and more easily tipped over to a malfunctioning state?)
  5. Even with a high polygenic risk, environmental factors will affect gene expression (by epigenetics), which means that autism may not develop, or may develop to varying degrees of severity. For instance, it is known that maternal toxin exposure (such as heavy metals and pesticides) or taking certain medications during pregnancy increases autism risk for the baby. Premature birth is definitely linked. Even maternal stress has been identified as a factor.

OK, enough on autism causes. I think you can see that the wave of increasing autism prevalence can only be addressed by a combined approach, which looks at genetic, environmental, and epigenetic factors on a multi-generational basis. We still have a long way to go to get a full understanding.

Breadth of the Autism Spectrum

Not surprisingly, considering the various root causes of autism, the spectrum is very broad. Many autistics have co-morbid conditions such as epilepsy, dyspraxia, and intellectual disabilities, but even without considering co-morbids, there are wide variations in the severity of autistic traits.

This doesn’t mean that autism is on a continuum with the neurotypical brain or that “we’re all a little bit autistic”. There are commonalities in the way in which a developing brain adjusts to compensate for neurological issues. Hence, everyone diagnosed with autism, at whatever level, will have traits within the common domains: deficits in social communication and interaction; and restricted, repetitive patterns of behaviour, interests or activities. We’re just affected to different degrees, depending on the type and severity of the underlying neurological problem and the way in which our individual brain adapts.

Autism Cures and Treatments

There is much disagreement over whether or not an autism cure, if such a thing could be developed, would be desirable. To me that’s a moot point, because how can we develop a holistic cure for a condition which is not a single disorder? It’s not going to happen.

The way I think of it is this: if autism is not a single neurological disorder but a compensatory developmental trajectory, what does that tell us? We can think of autism as the brain’s attempt to build alternate pathways to work around a neurological issue. This alternative wiring is obviously important in maintaining the autistic person’s cognition. Any attempt to alter or remove autistic cognitive pathways is likely to have a negative effect on that person, unless the root cause of the autism – the underlying neurological issue – can also be resolved. Without understanding this, attempts to cure a person’s autism can actually be perilous.

When presented with a potential autism treatment, it’s important to see where it fits within the equation:

Various neurological problems –> developmental differences –> common pattern of behavioural issues = autism

For any treatment to be a genuine cure, it must address the root cause, that is, the neurological problem. This means that, while we might be able to prevent or treat certain subsets of autism with a common root cause, there can never be a single, definitive cure.

The most common treatments for children, such as ABA therapy, are aimed at lessening autistic behaviours. They target the third and last part of the equation. The obvious problem to this approach is that it neglects consideration of the reason why those behaviours have emerged.

Many of these therapies are somewhat successful, in that an autistic child may learn to modify their behaviours to become less disruptive. While this may seem completely positive to their teachers and carers, there can be a negative impact on the child themselves. Developmental differences are still present, internally, they just become less obvious on the outside.

Imagine, every moment of every day, feeling the itch of a hundred mosquito bites and being told that scratching them is absolutely not acceptable. How exhausting would it be to constantly fight that impulse? So the autistic child is having to actively and constantly work against their own natural impulses in order to keep autistic behaviours in check.

Don’t get me wrong, I’m not against helping autistic children to find work-arounds and alternatives to disruptive behaviours. It is possible to mould young brains to some extent, and the better an autistic can fit into society, the more opportunities and choices they are likely to have in life. In fact, researchers have identified a subset of autistic children who have an “optimal outcome” and actually lose their autism diagnosis.

Has their autism been cured, though? Of course not. The reason they’ve lost the diagnosis is that the diagnostic criteria are based on external observation of autistic behaviours. Such behaviours may be trained out of a person, but will they still experience difficulties due to their autism? Of course they will. The difficulties are likely to become internalised into mental and physical health problems instead, so you no longer see them.

What I’m saying is that we need to be careful when implementing any behavioural treatments to be sure we are always working for the benefit of the autistic person and not solely to extinguish “abnormal” behaviours, at any cost. Which brings me to:

The Autism Schism.

In recent decades, disability advocates have been moving away from the “medical model of disability ” and towards the “social model”. That is, not just seeing disability as a problem within a person which needs to be fixed, as far as medically possible, to allow them to function normally. The “social model of disability” takes the view that society itself needs to adjust and accommodate people with disabilities, so that they can be afforded the the same rights and opportunities as everyone else. That means accepting autistics fully into society, “abnormal” behaviours and all.

Another concept adopted by autistic advocates is that of “neurodiversity”. This is the notion that autism (and other neurological differences such as ADHD) should be recognised as being a part of the natural variety of human brains. The implication is that autism ought not be considered a disorder at all, but a different way of seeing the world which is equally valid.

My understanding of the schism which divides the autism community is this. On the one hand, there are people like myself, the “Level 1” or “Asperger-type” autistics. We have some ability to communicate our difficulties and maybe even advocate for awareness and support. Our aims may be to improve our employment prospects and mental health support, for example. We might use the social model of disability to argue for adjustments at work, and we might adopt the concept of neurodiversity by stressing that autistic brains are different, but not less than, the neurotypical. We may feel that with acceptance of our difficulties and small adjustments by others, we can demonstrate our value to society.

The parent of the severely autistic, intellectually disabled or non-verbal child may see things differently. There may be little comfort for them in the social model of disability because the fact is, there will be many things their child will not be able to achieve due to the severity of their autism. There are limits on how far their difficulties can be offset by societal adjustments.

The neurodiversity concept may also be problematic. It casts a positive light on autism only as far as it is caused by the natural shuffling of genes within the human gene pool. Certainly that may apply to polygenic autism, but when it comes to de-novo mutations or autism triggered by toxic effects, the concept is on shaky ground, and may be unhelpful. It alienates those whose experience of autism is overwhelmingly negative.

In Conclusion

What I’ve tried to illuminate in this post is the heterogeneity of the autistic population, which obstructs us from reaching a common concensus on our needs and advocacy goals. If nothing else, I hope readers will understand to avoid blanket statements with respect to autism causes and treatments.

One person may consider their autism a blessing, another a curse. One may strive for acceptance, another for a cure. Depending on their situations, both views may be equally valid and appropriate.

I think perhaps we’ve missed a step on the road to autism acceptance. To fight a battle an army must be united. If we could recognise and heal the internal divisions within the autism community, maybe we could finally advocate for our multiple and varied needs with one, powerful voice.

Nervous System Dysregulation – ASD vs ADHD

skateboarding picture 1
Sad boy sick of autism. Plays with yellow toy car while his mother is looking at him royalty free stock photography

I’m not an expert on ASD and ADHD – but there seems to be a lot of misunderstanding out there around the connections and differences between these conditions, so thought I’d put forward my 2 cents.

This is just my opinion based on what I’ve read and observed. Observations on ASD courtesy of myself and my son, and those on ADHD based on my (possibly undiagnosed ADHD) daughter and her (definitely ADHD) boyfriend.

So one connection between these conditions is they both involve nervous system dysregulation – but they differ in the details.

Let’s not get too technical. For one thing, I always get confused myself between the sympathetic and parasympathetic nervous systems. And where does autonomic nervous system fit in? Or the somatic? Better limit myself to one paragraph of explanation here.

So our nervous system is what allows our brain to find out what’s going on in the rest of our body and control how we respond. What I’ll be talking about here is the Autonomic Nervous System (ANS). “Auto” is the same root as in “automatic” and “autonomous” – it regulates involuntary processes like heart rate, blood pressure, digestion, and breathing (and yes, we can also exert control over breathing – more on this later*). Oh darn, I need another paragraph. Bear with me…

I’m going to talk about hyperarousal and hypoarousal. “Hyper” refers to an excess and “hypo” refers to a deficit (just like in diabetes, but referring to nervous system activation instead of blood sugar). This is to avoid talking too much about the 3 types of autonomic nervous system: parasympathetic (PNS), sympathetic (SNS) and enteric (ENS? – no idea). Because I figure we’re not doctors, we don’t need to know how it all works, we just need to know how it makes us feel and what it makes us do, right? Oh dear, I need one more paragraph. Or maybe two. But this will be the last technical bit, I promise.

To quote wikipedia:  the sympathetic nervous system is often considered the “fight or flight” system… it is a “quick response mobilizing system”. So when I’m talking about hyperarousal, that generally means the SNS is activated. (See why I’m confused? Why would a system that causes me so much trouble be called “sympathetic”, instead of “uncaring”, or even “downright nasty”?)

Wikipedia again: The parasympathetic nervous system is often considered the “rest and digest” or “feed and breed” system… it is  is a “more slowly activated  dampening system”. So the PNS brings us down from “OMG I nearly crashed the car!” to “let’s vegetate in front of the TV with a bag of crisps”. Hypoarousal would be when the the body stays in this resting state instead of upping its game when needed.

(P.S. “crisps” is “chips” to you Aussies. No, Brits, we don’t mean your kind of chips – those are “hot chips” here. Or “chippies”, which also refers to carpenters, just to make things absolutely clear. So I don’t mean hot chips, otherwise known as french fries, which are actually pommes frites, I mean chips which are cold and come in bags – and just because y’all call them chips doesn’t mean they’re not crisps to me. Glad we got that sorted. Don’t get me started on how to pronounce “yoghurt”.)

So if you’re still here, it seems like the dysregulation in ADHD is easy to understand. Basically, ADHDers spend most of the time in a state of nervous system hypoarousal. So don’t expect the best from them doing a mundane desk job or something repetitive, as they’re going to be hopping from one task to another, or else hopping from one foot to the other, trying to activate their SNS enough to maintain their attention. They probably won’t finish the task but it’s not their fault – it’s the way their brain is wired.

From my observations, it seems like ADHDers can up their attention levels and achieve good performance with a combination of:

  • stimulant drugs or caffeine. These may have a reverse, calming effect on behaviour
  • doing tasks with an active, physical component
  • doing tasks with a stimulating, social component
  • working when motivated by the stress of an approaching deadline, or
  • when intensely interested in the activity

I’ve also found that they crave sugary drinks and snacks – to their detriment, as the sugar rush they need will be followed by a whopping crash. (But try telling teenagers that).

Dysregulation in ASD seems to be a little more complex. I think we can exhibit hypoarousal similar to in ADHD, which is why there can be misdiagnosis, or confusion over whether a dual diagnosis would be applicable. But the difference is that we will also suffer hyperarousal under conditions that stimulate the nervous system. That’s why autistics are prone to meltdowns or shutdowns under conditions of stress or overwhelm. (This is not just my opinion – there’ve been scientific studies showing ANS dysfunction in autistics based on measurement of heart rate and the stress hormone cortisol).

As a personal example, my reaction to caffeine varies depending on the state of my nervous system. Typically I can handle a modest amount of coffee and it usually helps with concentration, but if I am in a hyperaroused state the caffeine will boost the SNS further and make things decidedly uncomfortable.

Autistics generally use repetitive body movements to help regulate our nervous systems. I don’t like the term “stims” (short for “self-stimulatory behaviours”) because it’s a misnomer – the movements may be used either to stimulate or to soothe; they are “regulatory behaviours” (“regs”? “lates”?). For instance, when I’m getting overwhelmed at work I will get up and walk around – but I might also get up and walk around to stimulate myself when I’m feeling bored. I play with my fingers when I’m nervous but might also do so when I’m trying to concentrate. I may not even know whether I’m hypo- or hyper-aroused, I just know that I don’t feel comfortable sitting still at that moment.

You can see that the nature of nervous system dysregulation in ASD means we have different (and often opposite) requirements to ADHDers to achieve good outcomes:

  • avoiding stimulants and caffeine, especially when stressed, angry or upset
  • doing tasks with an active, physical component – for short periods with calming rest breaks in between
  • avoiding or limiting tasks with a stimulating, social component
  • working without the stress of an approaching deadline

The only common factor to achievement within both groups is:

  • being intensely interested in the activity

In other words, whatever your neurotype, do what you enjoy!

*A final word, as promised, on the matter of respiration. Breathing is one of the few processes controlled by the ANS over which we can also exert conscious control. This works both ways – meaning we can use breath control to influence the state of our nervous system. Think of it as respiratory “stimming” (“regging”? “lating”? Hm, I need a better term). That’s why breathing is such an important part of practices such as meditation and yoga – and recommended for anyone who suffers any kind of hyperarousal such as anxiety or panic attacks or PTSD, as well as autism.

That’s all for now; hope this post provided a bit of intellectual stimulation (without triggering too much pacing!)

A tale of ills and pills

Hi all,

Just checking in and saying hi, sorry it’s been so long between blogs.

I’ve been having some issues on the mental health and medication front, which is why I haven’t sufficiently enthused about anything to blog about it. Since I’m here, and feeling a bit more myself now, I might as well tell you the story. If you don’t mind a blog of a personal nature.

So… these last few years something has not been quite right with my mental health but actually pinning down what it was and finding the correct ‘label’ has been challenging. It never fit the diagnostic criteria for anxiety, or depression, or PTSD, or perimenopause, though I would cycle through symptoms common to all of these.

And labels are important, you know? The first time I went to the doctor with foot pain I had to describe to her where the pain was and when it occurred and to what level and how that affected me, from which she gave me the label “plantar fasciitis”. Now if I start limping and someone asks me what’s wrong, I can tell them it’s plantar fasciitis (assuming I can get my tongue around the double i) and am delivered from the need to go through the whole story of when and how much it hurts.

Labels are the shorthand which enable us to give someone a sense of what we are going through and how they can help. Failing that, even when the person doesn’t understand what the label means, stating it with sufficient confidence and finality can still remove the obligation to explain one’s problems further (and place the onus on the other party to go look it up). Plus, of course, the label is important in obtaining the appropriate treatment.

So the story starts with me being given a tentative label of mixed anxiety and depression and being prescribed psychotherapy and antidepressants. The first antidepressant was mirtazapine which was actually quite good (not only for the effect on mood but because it had a sedative effect that helped me get enough sleep). I was on it for a few months, came off when I felt better, went back on when I started feeling bad again, came off again, went back on again. Then it stopped working; it pooped, as they say. I started feeling low and oversleeping and the sedative effect was no longer my friend but making me even more dopey.

Well the doctor was all for upping my dose (why do doctors do this? they push patients onto higher and higher dosages, with no thought of withdrawal symptoms when the poor person tries to come off). Instead I asked if I could switch to something else.

By this time, to be clear, I knew that I was not suffering from clinical depression. Or clinical anxiety, for that matter. After years of trying to find the right label I’ve worked out that it doesn’t exist – so I’m using my own. I’m calling it autistic stress disorder. Autistic because studies have shown that we on the spectrum have differences in the amygdala, the part of the brain responsible for emotional reactions. Stress disorder because it increases during stressful periods and manifests itself in a malfunctioning of the fight-or-flight reaction, which also occurs with anxiety disorders and PTSD, leading to periods of hyperarousal. Only we don’t have panic attacks we have meltdowns. Or we have shutdowns, which look like depression, because it becomes a struggle to engage with people and live our lives. In my case, as you’ve probably worked out by now, it also means losing the energy and motivation to write, or even blog, for long periods.

Getting back to the medication story, if you have any sense you are now wondering why I wanted to go onto another antidepressant, after working out I was not clinically depressed. And the simple answer is that antidepressants seem to help. They level out my mood enough that rather than get upset about anything and everything, the meltdowns get saved for the times when they are, more or less, justified by life events.

The important point in prescribing antidepressants for Apsergers/autism seems to be this: KEEP THE DOSE LOW.

I learnt this the hard way recently when the GP switched me onto an SSRI called escitalopram. This one was not for me, I could not live with the side-effects. At night my jaw was clenching up (out of my conscious control) making it hard to sleep, and I would wake with a headache every day. Apparently jaw-clenching indicates low dopamine levels, similar to Parkinson’s disease. It’s a rare side-effect of SSRI medication, occasionally seen at very high doses – not at the level I was taking, which was supposedly the lowest therapeutic dose.

I switched onto another SSRI called sertraline. As a medication approved for use with anxiety disorders and PTSD as well as depression, I thought it might be a better one for ASD. So far I’ve had no major side-effects, but I’ve learnt my lesson and am taking half the dose the doctor prescribed. And it seems to be working. (For which I am very thankful!)

The other medication I’m taking now is 2mg melatonin in the evening. As one heads into menopause oestrogen levels drop, and apparently oestrogen is important in the production of melatonin in the body (the hormone which makes you feel sleepy when it’s dark). So was it the perimenopause rather than anxiety to blame for me coming wide awake at 3am? Well, the melatonin is certainly helping me sleep through the night. Whether true effect or placebo, I’ll take it.

And the upshot of all this is that I am finally, after a rollercoaster 3 months or so, starting to feel more like myself again. Less overwhelmed by life in general, and looking forward to the drive up to Mareeba tomorrow for 10 days of fieldwork.

So that’s the tale of my adventures with a mysterious mental health condition and my quest for the fabled pill of eternal happiness, leading of course not to eternal happiness but to knowledge and personal growth, in the way of all the best fables. Thank you for reading!

Nothing to See Here

Do you want to know why I haven’t been posting?

Are you sure?

Are you sure you’re sure? It’s not going to be pretty.

OK – if you’re absolutely 100% sure you want to know – here it is, the explanation for my lack of energy / inspiration, complete with the trampling of a self-imposed rule not to talk about my kids online, and a general airing of my dirty laundry. But hey, I’ve got to vent somewhere.

So let’s start with my daughter. Everything always starts with A, she’s like that. So she had a bit of a mental health crisis and ended up spending a few hours at the hospital, and this time I pushed the staff a bit. As in, can someone please assess her for X (a condition she ticks all the boxes for – every single diagnostic criterion)? Oh no, she’s too young to be diagnosed, they tell me. But we can say she has “emotional dysregulation”. Fine, but will that get her the appropriate treatment, the one she needs, which was specially designed for people with X? Blank looks. It’s suggested we try general talk therapy as, after all, she hasn’t actually been diagnosed with X…. you get my drift.

And then there’s the gut issues. She’s always had pretty bad atrocious eating habits, but when she started staying home from school complaining of belly-ache, I thought it was anxiety, or just A being A. But recently it got really bad. As in, belly aches daily, frequent trips to the toilet, not eating properly. The doctor hasn’t been much help so far but after doing a bit of googling myself I can understand why. There are more causes of gut issues than blades of grass in my garden. It’s a big garden.

Anyway, I decided to get her to keep a food diary, and try her on an elimination diet. We knew she was lactose intolerant already but we got stricter with it – no more ice cream or that gunk they call ‘soft serves’, only lactose-free versions of milk and yogurt. Bacon and sausages were out too, because of the preservatives. And we went (mostly) gluten free.

A digression: I’d always thought gluten-free would be incredibly difficult, but once I’d (spent a small fortune and) stocked up on the right food it wasn’t that bad. We even had a bit of fun baking our own g-f muffins and cookies. Which leads me to the next part of the story:

The elimination diet failed to clear up the problem (although it was hard to be sure because A being A, she hadn’t kept the food diary, and she kept breaking the diet). But I did note a particularly nasty episode relating to a multi-coloured iced cookie, which I strongly suggested she not eat after seeing 33 additive numbers listed on the back, and that of course she ate anyway. And my brain went down a different path: food additives <-> processed food <-> excess sugar <-> gut imbalance.

So now we’re onto diet version 2. Gluten is back on, lactose and bacon are still off. Processed and packaged foods are limited, and sweet drinks are not allowed. The idea is to get her eating ‘real food’ – the stuff that comes from plants, or the animals that eat plants (with inspiration from David Gillespie’s book of the same name: Eat Real Food). She hasn’t got the hang of it yet. Thinking to ease her into it, I left a few packaged items on the ‘yes’ list, such as frozen pizza, plain crackers and sesame snaps – so, of course, those are what she’s been eating.

Then on Friday I had one of those (not unusual) calls from the school saying A was feeling ill and could she go home, to which I agreed. Got home from work that evening and she had a very large and obvious tongue-piercing. Can’t say I was very happy about that – even apart from thinking tongue piercings are gross, how exactly is having a painful hole through her tongue going to help get some order into her eating habits? A’s boyfriend proceeded to tell me a colourful story about the drug-using habits of his family, the moral of which seemed to be that he was proud to come from such a family because he loves them for who they are, and hence I should be supportive of all A’s choices because I love her. It was, I have to say, an outstanding piece of Gen Z logical rhetoric. But no. Believe it or not, we Gen Xers are actually capable of separating love of the person from love of the holes they punch through themselves.

As always happens in this household, all the drama with A has resulted in very limited attention being given to my son and his issues – and oh boy, does L have issues. It’s mind-boggling that he recently turned 20. It’s like he stepped into a time-warp at around age 16 and got frozen at the same level of development. So yeah, while I’m first to acknowledge he’s got a brain the size of a planet (with a nod to Douglas Adams), I’m not holding my breath for L to learn anything practically useful in life, such as how to drive or get a job. We’re still working on the regular showers.

Now here I have a bit of good news, a breakthrough! But only if you know the background. That is, the two previous times I’ve enrolled him a course of study, only to have him fail to submit his assignments, from some combination of not understanding what was expected, not wanting to ask, and fear of failure. That last one is a doozy, because every time he fails to submit something it reinforces his belief that he is incapable, which renders him more wary of trying anything, as he is sure to fail. Paralysis by over-analysis!

Anyway, back in February I heard about this TAFE course in Cybersecurity that would be right up his street. I mean, this is a young man who starts conversations by querying one’s method of password protection and wondering whether quantum computers are going to take over the world (or something… it all goes over my head). At first he was like, I don’t want you to waste your money again, but when I pointed out that it was government-subsidised and he only had to pay $48, he reluctantly agreed it might possibly be worth applying.

Fast-forward through 3 torturous months of asking L whether he’d submitted this, reminding him to check his emails, realising he needed to submit that, reminding him to check his emails again, not understanding whether he’d got accepted on the course or not, asking him to actually read through everything in the emails this time, and eventually finding out he was on the course. Then asking him where and when his classes were, discovering he had no idea, reminding him to re-read the emails over again to find out, or call the tutor, and realising he didn’t have a clue who his tutor was either, getting him to watch the orientation video, and now the breakthrough – ta da! He attended his first zoom tutorial.

But Jeez. How long am I going to be managing his life for him?

And speaking of failing to manage one’s life… let’s just say that a lot of L’s personality traits didn’t come from his dad’s side. We’ve got the blind autistic leading the blind autistic here. Which brings us to the ongoing saga of ‘what the heck is wrong with me?’.

I suppose you might think dealing with the aforementioned kids’ issues may be affecting my mental health, and it does get a bit tiring. But A and L have been a constant in my life and I’m used to dealing with their personality quirks; there’s something else going on. My latest theory (and I found a published study to back me up) is that peri-menopausal hormone changes are exacerbating my autism. (Try saying that quickly). So what looks like an anxiety attack followed by depression would be better characterised as a meltdown followed by a recovery period. Biologically, it’s my body not being able to regulate stress properly, so there’s too much cortisol in the body leading to an adrenalin surge (meltdown / freakout), followed by depletion of the adrenals and low mood (recovery period).

Of course, the meltdowns tend to happen in the place where I have least control over stressors or opportunity to self-regulate – the office. If the work is of a nature that keeps my brain happily occupied for hours at a time, the way I like it, I’m usually fine. But recently I’ve had not one project I can concentrate on but a series of requests and emails on multiple projects daily. This completely stresses me out; it’s not what my brain was designed for! At the end of last week I actually got so paralysed by the overwhelm of trying to work out what to do first that I could do nothing useful at all. Then a computer glitch leading to the loss of my timesheet entries (normally not a big deal) triggered me into a freakout, and it took me all weekend and then some to recover.

The conclusion to this long post being, I’ve been too distracted managing my health and that of my kids to get the headspace to post anything here. And I’m only posting this now as a way of processing things for myself.

Especially, right now, I’m processing the latest in the work issue. I admit, I’m proud of my abilities at work – I generally see it as the only aspect of my life in which I function up to a normal standard, or even a superior standard in some aspects. Vested in work is much of my self-esteem. So it was incredibly hard to do what I needed to do and ask for changes to help me maintain my mental health. I basically had to admit that there are aspects of the job that maybe I shouldn’t be doing.

My bosses are great, they really are. I believe we’ve come to an arrangement to get me a long-term project I can concentrate on that will hopefully minimise meltdowns. Plus more help with managing my work in the meantime. It’s a win, of sorts.

But there’s a lot of grief also. Because while I’ve known for a while now that I wasn’t going to get to a higher level at work but would need to stick where I was, I did believe I’d be OK there. I wasn’t expecting it to keep on affecting me like this. Plus I’ve never so openly explained my limitations before; I’ve only ever danced around it in the past, telling them issues I was having with the work but not fully explaining the root problem. I wonder how much respect I’ve lost now, and whether they’ll think of me differently.

Perhaps this was a necessary adjustment. Ultimately, when one is on one’s deathbed looking back, which will feel better: to have achieved success and acclaim at work, or to have put one’s best effort into giving one’s kids the love and attention they deserve? It’s a no-brainer, right?

Still, these last few years have given me a lot to process. And they leave me puzzling even more over how one is supposed to respond when people come up and ask: Hi Kay, how are you?

What on earth does one say? Fine, and leave it there? Do people understand the subtext, that maybe I’m not quite entirely fine, but I’m still alive and taking things a day at a time and remain optimistic for the future, so, I guess… nothing to see here.

Taboo Topics – 6.1 Parenting Solutions

OK, yes, I agree that my previous post on parenting problems was somewhat lacking in substance.

Firstly, I failed to explain that my topic was solely on the difficulties of being an autistic parent. Not an “autism parent” (parent of a child with autism), but a parent who is on the spectrum themselves. The post was not intended to address any of the complexities around raising autistic children.

Secondly, while I listed some typical autistic traits which can make parenting difficult, I failed to propose any solutions. Which, I have to agree, makes the post somewhat lacking for any fellow AS parent looking for tips, or for family and friends looking to offer support.

So let’s go a bit further.

Talking about the ways in which autism can adversely affect parenting still seems very dangerous, so I’m feeling the need to repeat myself here. Every parent in the world has issues that affect their parenting, whether they have ASD or OCD, NPD or PTSD, or are just plain immature. If you dare use my post to suggest that autism, of itself, prevents a person from being a good parent, I will personally come round and tie up your cat’s whiskers and kidnap your flowers, comprende?

Right, now I’ve got that out the way (removed my 1920s fedora, stubbed out my cuban cigar, and brushed off my lapels), here are some ideas on parenting strategies for those with AS:

Strategy 1: Enlist Partner Support

If you are lucky enough to have a supportive partner, enlist their help. Work out (for each of you) your parenting strengths and weaknesses – or list the parenting activities you enjoy, dislike, and absolutely can’t stand. Distribute tasks in a way that maximises enjoyment and minimises pain for you both, as far as you can.

That may mean some unconventional approaches, such as an NT (neurotypical) father arranging playdates instead of the autistic mother. It could mean an NT mother taking on spontaneous activities such as outings while the autistic father looks after those that can be regularly scheduled, such as meals and bedtime routines. The important thing is to go with whatever works for yourselves and the kids, rather than sticking with conventional gender roles.

It’s important to regularly check with your partner that they remain happy with your arrangement. The reality is that the NT partner, without personal experience of AS, may not appreciate the necessity of the support they are being asked to provide, which may be more (or different) than they had anticipated going into the relationship. They can start to feel unappreciated and resentful. So the autistic partner needs to be proactive in asking how their partner is going and being willing to negotiate changes to the arrangements.

On the other hand, where the NT partner refuses to provide the requested support or chooses to stick within the defined roles they may be more accustomed to, the autistic parent needs to be vocal on the level of difficulty they are facing because of their AS. There must be understanding that an autistic parent forced into performing according to normal NT standards without support is risking a burn-out or breakdown.

Strategy 2: Enlist External Support

This is what you will need to do if you don’t have a partner or s/he is not sufficiently supportive. I can’t say much about enlisting external support as personally I’m particularly inept at obtaining such and have typically muddled along without.

What I will say is that for an autistic person it is crucial that any support is regular and consistent rather than chaotic with respect to type, timing or duration. This means that it may need to be provided either by close family members who have sufficient time and motivation (such as retired grandparents), or by paid arrangement with a service provider. Many types of informal supports fall down through being of an ad-hoc nature which is insufficiently reliable, or through reliance on friendships or social networks, which an autistic may struggle to maintain.

If a parent is self-diagnosed and in need of external support, I do believe it is worthwhile seeking a diagnosis if that might improve access to formal assistance. However, do not disclose your autism to those involved in child welfare. There is too much scope to mistake your need for support as a parenting problem which might endanger the kids.

Strategy 3: Keep Trying (the power of persistence)!

Parenting is all about learning on the job – so it’s important to see oneself as capable of improvement. That doesn’t mean struggling to overcome autistic limitations and become neurotypical – because it’s impossible to overcome a neurological difference. “Improvement” means learning work-arounds and compensation strategies. Don’t try to break past your limitations; sneak around them while they’re looking the other way.

So whatever the parenting issue, keep trying strategies until you find ones that work. In fact, employing strategies to get around your AS in other aspects of life can also be a blessing by freeing up your energy to attend to your kids. What I mean is things like:

  • setting reminders and alarms to help you leave work on time and transition from work tasks to home tasks, or from housework to child care
  • have a written or visual schedule of childcare tasks to keep on track
  • sort out a system for keeping track of finances and paying bills on time with minimum fuss
  • streamline shopping trips to get as much in one go as possible, or shop online
  • if you’re struggling to understand the emotional needs of your kids, try to regularly ask them how they feel or get them to use emotion cue cards
  • indulge obsessions while the kids indulge theirs – read a favourite book or podcast at their athletics class. Or better still, encourage them to share your own interests so you can indulge them together
  • become comfortable with the kids’ social lives by setting rules over activities and durations and loosening these up over time as you gain confidence
  • as the kids get old enough to understand AS, be honest about your difficulties and enlist their support. They will come to appreciate the benefits of a less frazzled parent

Frankly, for any parent with AS, there are going to be times when you are too overwhelmed to do the right thing. There may be meltdowns or shutdowns when you yell at the kids or shut them out. Crushingly, there may be times when you have to deny the kid something important to them, because your limitations do not allow you to provide it. That is the nature of AS.

When it happens, don’t beat yourself up about it. nobody can be a perfect parent, or even a good parent, 100% of the time. And kids are resilient, as long as they know they are loved. Just look back afterwards and try to understand what went wrong and learn from it. Might there have been a work-around? What could you have done differently? Could you have enlisted help?

Ultimately, you need to give yourself a break – and recognise that it’s not easy being a parent with AS. As long as you have your kids’ needs at heart, you’re doing great. Just keep trying.

Taboo Topics – 6. Parenting Problems

I think I’ve procrastinated enough over this one and need to just write something…

This topic is more of a taboo than most – it’s rare for someone on the spectrum to admit to difficulties in the area of parenting. Sometimes that’s from lack of self-awareness (i.e. seeing oneself as a good parent no matter what). Often I believe it is from fear of being labelled a “bad parent”. It’s all very well being open about how one’s autism affects oneself as an individual, but so much harder to be open about how it affects one’s kids.

I’m hoping that what readers have taken from my previous taboo topics was not that autistic people have empathy deficits, that we struggle in relationships, become obsessive about our interests, tend to get fired from our jobs, and may be genderqueer. I’m hoping that the take-aways were more along these lines:

  • autistics typically have deep compassion for others, even if it doesn’t always show in our words or behaviour
  • we can maintain romantic relationships through mutual understanding of each other’s differences and needs
  • our obsessiveness, if channelled appropriately, can be a power for good in society
  • we will typically work our butts off for an employer who is accepting of our differences and willing to provide targeted support
  • unconventional gender presentation is only a problem as far as society believes it to be

My fear is that readers might come away from my posts remembering the negatives and not the positives. However well one tries to explain, this can happen. You can see it in the way the autistic deficit in cognitive empathy has morphed into a common misconception among the public that autistics “have no feelings for others”.

My fear is of the potential for discussion of parenting difficulties to morph into a sense of “autistics make bad parents”. I certainly do not wish to infer any justification for people in authority to use the fact of a person’s autism diagnosis to query whether they should be allowed to have children in the first place, and even whether their kids should be removed from their care.

So when I mention difficulties an autistic person might have with parenting I’m relying on you, my kind reader, not to jump to negative conclusions. Please read to the end of the post!

After all that, I have to admit that many autistic traits, even of the mild Asperger type, can be troublesome when it comes to parenting. Here are a few examples (but note that not every autistic will have all these issues):

  • sensory sensitivities to noise and smells (which may be triggered while looking after babies, for example)
  • difficulties in networking with other parents and finding social support
  • difficulties understanding and providing for the emotional needs of a child, particularly if the child is not autistic themselves
  • discomfort with providing for the social needs of a child, for instance, allowing friends over
  • conflict between the need to spend time with the children versus the need to attend to personal interests/obsessions
  • over-reliance of the parent on the child, as the social communicative abilities of the neurotypical teenager comes to exceed those of the autistic parent

So yes, there are challenges associated with being a parent on the autism spectrum. What I wish to stress is (and I think any parent would agree), there are challenges to being a parent full stop, whoever you are and whatever your neurological makeup.

If we were to look at conditions amongst the population with potential to lead to “bad parenting” what might we think of? Autism, yes. But what about physical disabilities which limit strength and mobility? What about mental health conditions such as schizophrenia or PTSD? Personality disorders such as narcissism and sociopathy? Would we count single mothers? Lower socio-economic status and poverty can certainly play a role, but so can high socio-economic status if it results in arrogance and entitlement.

So basically, if we were to search for people with the potential to be bad parents, we might be looking at the entirety of humanity.

I hope you get what I’m saying. Parenting is challenging for everybody, in one way or another. It is entirely dependant on the individual whether they can work out positive ways to rise to that challenge, within their ability. Some can and some can’t. Why assume that autistics are incapable of recognising and working around their difficulties, or in seeking support if necessary? Autistics can make good parents or bad parents (or more likely, land somewhere in between), just like anybody else.

One more thing before I sign off. Have you heard of the “double empathy theory”? In recent years there’s been research carried out studying the interactions between neurotypicals (NTs) and autistics and between autistics themselves. To paraphrase the findings, it was noted that NTs and autistics tend to misunderstand one another. However, autistics in general had a better understanding of other autistics than the NTs did. In other words, the cognitive empathy deficit goes both ways. It is not just autistics failing to understand NTs, but NTs failing to understand autistics.

What this illustrates is that the discourse on autism has historically been based on negative traits, observed and assessed from a majority NT viewpoint. It is only recently that people have started looking from the autistics point of view. What they discover is that many of these so-called negative traits seem perfectly normal and acceptable to the autist. To us, it may be the NT behaviours which appear insensitive and lacking in understanding and compassion.

I would suggest looking at autistic parenting in the same way. Traditionally, it is the NT majority who have come to a concensus on what type of parental behaviour is good or bad. Yet autistics are frequently appalled – utterly apalled – at the way autistic kids are treated by NT parents and people in authority.

[That was a meltdown not a tantrum – can’t you see the child is not misbehaving, they are overloaded and have no control. They need a quiet safe space to be left alone. What do you expect to happen when you yell at someone in a sensory meltdown? Or yank the arms of someone who is sensitive to touch? Why do you punish a child for behaviour that is out of their control? Have you no empathy at all?]

In other words, perhaps it is autistic parents who should be the authorities on how best to parent an autistic child. In this case, it is worth considering whether an autistic parenting style which seems different, or even wrong according to conventional wisdom, may be just what is needed.

That’s all I wanted to say – over to you.

Taboo Topics – 5. Gender Identity

Yeah I know I’m rushing through this set of posts. For some reason I feel like time is running out to get these down, not sure why. Maybe I just need to get some things off my chest quickly and move on.

So I hadn’t planned this one at all (I’m actually procrastinating over my planned post on parenting) but I was reading something about the link between autism and diverse gender identities and I thought: why not?

I know gender identity is hardly a taboo topic, in fact it seems to be a common point of discussion nowadays, but it’s not something I’ve ever talked or written about before. So it feels like I’m breaking a taboo, at least on a personal level. And I have the feeling people meeting me perhaps wonder exactly where I sit on the whole LGBTQI+etc spectrum, so now you get to find out.

So, I’ve heard that quite a few spectrumites, like me, feel that their autism has affected their gender identity. There’s even a word for it: autigender. Having said that, the exact way in which autigender presents itself can be anywhere under the sexuality-gender-matrix, so please don’t think that my experience covers those of others. This post is unashamedly all about me!

So… where to start?

Well, I suppose as a child/teenager, gender identity issues were not on my radar. Back then, society was only just starting to admit that homosexuals were, you know, humans too. And transgender wasn’t a thing. I was probably about 16 when I went to see The Rocky Horror Picture Show and discovered the meaning of the word transvestite. So yeah, I was quite an innocent in that way.

It’s kind of funny, actually, because in my teens it was probably obvious that I was not exactly 100% gender conforming. I had short hair and wore jeans and T-shirts instead of dresses (actually I still do). I used to get mistaken for a lesbian sometimes, which was ironic because I was actually a little bit homophobic back then. Not in a hateful way, just out of ignorance – fear of the unknown. I like to think I’m more accepting nowadays.

I believe what was going on with me was just the way my brain was developing, because of AS. Other teenage girls grew out of adventure stories and started reading Jane Austen and Charlotte Bronte – they were learning the social nuances associated with an adult female identity. I moved to spy thrillers and sci fi novels, which were just other kinds of adventure story, and I was quite happy picturing myself in the role of the hero (whether male or female). It’s like I got stuck in a prolonged pre-teen gender ambiguity.

As I entered adulthood, this did not bother me or cause me much grief. It was not that I was suffering gender dysphoria and felt myself to be male; I knew myself to be female. It was more that my systemising Asperger brain was directing me towards the study of science and engineering and other pursuits that were traditionally considered within the male domain. Plus I never did get the hang of women’s clothes – they come in way too much variety, and all with a severe lack of pockets.

It was only quite recently that I seriously wondered if I might be transgender. I’d written a novel called The Empathy Key, in which a transgender cyborg struggles with the loss of her/his humanity, which on reflection was quite clearly a cry out from my subconscious for clarity in relation to my own identity – with respect to both neurology and gender. I also read the memoir “Danger Music” by the inspiring Eddie (formerly Emma) Ayres.

So I experimented a bit with wearing more overtly men’s clothes to see how I felt – and while I quite enjoyed that, the result was that no, I was not transgender. Not only did I feel no intense, driving need to take on a permanent male identity, but I felt that too much of myself had been formed from the experience of living in a female body to make such a radical change.

My view might have been different, though, if I’d still been a teenager, struggling to understand why I was so different from the other girls.

And that makes me wonder: is this happening with modern autistic teenagers? In some cases, could autigender be getting confused with transgender?

What I’m going to say here is hugely controversial, and I concede that I’m only looking at things from my own point of view, without having experienced significant body dysphoria, so I may be out of touch with the experiences of transgender folk. But I feel like we ought to be allowed at least to express an opinion in the spirit of open discussion. So here it is…

It concerns me that in the current zeitgeist, kids who are querying their gender identity are so readily presented with the possibility of changing biological sex by hormones and surgical procedures. It seems such a radical and permanent approach, and I worry that they may not have been provided with genuine alternatives. I wonder if some of them might be spared surgery and come to peace with their gender instead through the concept of the non-binary.

Could we not dispense with the black-and-white concept that if one does not feel female, one must therefore be male?

Maybe as a society we need to move away from dividing ourselves into those two distinct categories. Could we not be accepting of a biological female who wishes to dress and act in the manner of a male? Could we not learn to be OK with a biological male dressing as a female and joining in activities with the girls (as far as it is fair and safe to do so)? Or with someone who seems male on one day and female the next? Maybe, if we had better acceptance of non-binary genders within society, there would be less need for surgical and hormonal interventions.

So hopefully, in addition to giving you food for thought, the above explains my gender identity. Yes, I do believe I’ve just followed the prevailing trend and come out as somewhere in the range of the non-binary.

Just don’t start calling me “they”, as I have no inclination to join in the whole “don’t mis-gender me” thing. “She” is fine and, if you like, “he” is fine. Or in other words, I stand with Eddie Izzard.

Taboo Topics – 4.1. The Real Workplace Woes

OK I admit it, my last post was a cop-out. I’d promised something on difficulties with workplace relationships, but then posted something with no mention of relationships at all. I chickened out.

Let’s dig deeper and try again, shall we?

See, this is the real reason I’ve got workplace issues listed as a taboo topic. Not because people with AS have difficulties at work per se, but because we don’t like to delve into the primary reason for that, which is that we struggle relationships – of any kind: romantic, platonic, work colleagues, bosses, whatever. Most of us have an accumulation of embarrassing, humiliating, painful incidents in our working lives that we simply do not wish to be aired.

A special mention here to Michelle Vines, author of “Aspergers on the Inside”, which I would recommend reading if you want to know more on this topic. Michelle is a highly intelligent, degree-qualified engineer who nevertheless has found herself unable to work due to her Aspergers – as her memoir openly and honestly explains.

Many with AS continually get into trouble in the workplace but don’t have enough self-awareness even to know what they’ve done wrong. A quote I saw on another website summarised it well: “they get fired all the time, and they have no idea why.”

I think it’s important that I write this additional post, because I have more self-awareness than many. Generally speaking, I do know why. In some cases, I’ve even worked out how to avoid the adverse consequences of being on the spectrum – I have techniques that other autists and their employers need to know. So let’s break it down.

A. The Cultural Norms of the Workplace are Different

A young adult with AS will have learnt how one is supposed to behave in the home or the school setting. But the workplace is different; there’s a whole new set of expectations to be learnt – and autistics are not good at picking up on social expectations and unwritten rules. Without guidance, of course they will cross boundaries. They may seem to be disrespectful of the boss by treating him/her as an equal, they may overshare personal matters, or they might be too afraid if appearing stupid to ask for clarification or help.

So the first thing for an employer to be aware of is the need to explicitly tell the autistic employee the expectations of workplace behaviour. S/he needs to know very clearly the organisational structure (formal and informal). Rules should be laid down as to things like working hours, overtime, when it may be appropriate to take sick leave and how to ask for it. They need to know the unwritten rules, too, such as appropriate work attire and standards of personal cleanliness, how to respond to a work email or answer the phone in a professional manner, when it is OK to disturb the boss, and any inappropriate topics of conversation with colleagues.

This is the main reason why an internal mentor is invaluable to help the autist find their feet, for at least the first 6 months. They will need someone to explain the rules and expectations, to provide direct and honest feedback when they get things wrong, and to provide reassurance that they are doing OK and with time and persistence will start getting things right.

B. The Most Serious Work Problems Arise from Relationship Issues

I said I copped out, didn’t I? There I was explaining my personal strategies to improve communication and organisation, when these are not the biggest workplace problems at all. The serious problems – the ones that lead to performance scrutiny and potentially getting fired – typically arise from poor relationships.

The fact is, if bosses and colleagues get along with us well, they will deal with our mistakes and poor performance by offering support and training. If they decide they don’t like us, the smallest mistake will lead to punitive actions. That is the nature of humans. It’s not about technical performance of the work, it’s all about whether or not we are seen as a member of their circle, “one of us” rather than “one of them”.

Fortunately, it’s not impossible to develop good relations with work colleagues, provided they are understanding people. I discovered early in my career some simple techniques that go a long way. (To NTs these will probably seem laughably basic, but trust me, none are automatic or easy for people with AS). I’m talking about things like:

  • Remember to greet colleagues in the morning and, if it’s Monday, asking if they had a good weekend.
  • Smile.
  • Eat lunch with them and join them for a beer if invited.
  • Smile some more.
  • Laugh at their jokes. Laugh even if you don’t get the joke.
  • Don’t be prickly – laugh at yourself if they tease you. Assume they mean well.
  • If they share personal problems, don’t jump in and tell them how to fix them, or tell them what you would do, just be sympathetic. Try to understand how they are feeling. Ask if there’s anything you can do to help.
  • Try reading books or watching podcasts on how to be social and connect with people. You never know, some of it might stick.

C. If the Environment is Toxic, the only Solution May be to Leave but Be Smart About It

I said above, it’s not impossible to develop good relations with work colleagues, provided they are understanding people. Unfortunately, that is not always the case. There are certain people (often ones with deep insecurities of their own) who will make life miserable for an autistic.

There are so many ways it happens. It could be that a colleague feels threatened by your technical abilities. It could be a closet narcissist who can’t handle your ability to see through their bullshit, or your unwillingness to compromise your principles to serve their desire for power or recognition. It could be the passive-aggressive boss who acts friendly to you face but puts you down behind your back. Oh, I could go on, but let’s leave it there; you know what I mean.

Usually, these people are far better able to play the system than we are. They know how to get the sympathy of others and cast us as the problem. If it comes to direct conflict, unless we have solid support from their boss, I believe we are unlikely to prevail.

This is only my take on it and others may disagree, but I believe the best course of action is to leave. Toxic environments create so much trauma for an autistic that it’s not worth it.

The important point is to ensure you leave on your own terms, when you are ready. That means being on the lookout for other work opportunities and grabbing anything that comes up. Try to keep your head down and avoid conflict until you’ve got other work lined up. By all means, tell the boss and the HR manager how much grief this person has been giving you, but tell them in your resignation letter.

Many would see that approach as being weak, I expect, but it’s based on a lifetime of experience with not having my opinion heard and understood. I think it’s better to leave than to be chewed up and spat out by the ceaseless cogs of a toxic workplace.

Oh…

I didn’t mean to end this post on such a negative note!

But hopefully my thoughts on workplace relationships were enlightening, if not entirely positive? And please stick around, I have another Asperger taboo topic coming. Catch you later.

Taboo Topics – 4. Workplace Woes

It’s no secret that many autistics have a hard time getting a job. A lot of that is in the way we present ourselves in our CV and in person at interviews.

I’m not going to talk about job searching or interview techniques though, as awareness is increasing of autistic issues in those regards. A welcome trend has started with companies in the IT and finance sectors becoming aware of the untapped pool of talent out there and deliberately targeting neurodiverse candidates. Some are changing their recruitment methods to enable people with AS to demonstrate their skills practically without going through a formal interview at all.

That’s great progress, no doubt about it, and I hope it expands to companies in other sectors also. But my concern today is on what happens after recruitment – that is, the specific difficulties people with AS may have in the workplace, which can lead to them losing or having to quit their job. It is the challenge of not just getting a job, but keeping it.

This one is not a taboo topic amongst those with AS – we all know the difficulties we face – but it is a hard thing to talk about with neurotypical folks. Most of us have experienced trying to verbalise to someone our difficulties in the workplace only to be met with remarks such as “I feel like that sometimes”, “it’s the same for everyone”, or “don’t be so precious”. Basically, we are gaslit (or gaslighted?) into believing that our workplace difficulties are no worse than anyone else’s and we ought to just suck it up.

Nope. Those responses demonstrate a damaging lack of awareness, plain and simple, and that needs to change.

I’m not saying that neurotypicals don’t have workplace woes as well – in fact they may experience the same issues on occasion (which is why we get those types of responses). The problem is that the number and frequency of issues faced by the autistic person is often greater, and the ability to regulate the associated stress response is typically lower.

That last point might need a little explanation. So, studies have actually measured differences in autistics’ brain areas such as the amygdala (which is responsible for identifying threats) and cortisol levels (which enable appropriate physiological reactions to threats). Sensory input may be heightened and stress levels less regulated, so that in certain environments or situations we will be prone to overload, leading to meltdowns or shutdowns. If we try to “suck it up” and remain in such a work environment long term, it leads to autistic burn-out. So that approach is counter-productive as we’ll end up off work in any case.

So what would be a better approach?

We need employers to stop putting all the onus onto the autistic person to “learn to fit into” the work environment. I’m not saying we shouldn’t try our best – autistics can certainly develop and employ workarounds and compensatory strategies – but we need employers to meet us halfway. That means recognising that people with AS, however well qualified or intelligent, have hard-wired differences which we are not able to turn off like a switch however much we would like to “fit in”.

In fact, what I’m asking for is no more than the legal requirement to make reasonable adjustments for persons with a disability. It only becomes a problem when, for example, Asperger-type autism is not recognised by the employer as a genuine disability, or when they fear the adjustments would be unfair to others or too onerous. Unfortunately, these employers will never get to see the true value of their AS staff and the contribution they could make under optimum conditions.

So let’s look at what a sample person on the spectrum (me) actually needs in order to stay in work long term, as an example. Obviously, we are all different and have different issues requiring different adjustments – but if I were to go through all the permutations I’d end up writing a book. A few of these are formal employer adjustments but most are just my personal strategies that I’ve developed over the years:

1. It is crucially important to choose the right kind of work. My heart goes out to those autistics who end up in high pressure customer-facing roles (many retail and service industries, call centres and the like), or in noisy and hectic environments, to which most of us would be completely unsuited. For myself, engineering was a good choice. My current role is particularly autism-friendly, involving self-directed individual work of a technical nature, in a quiet office or sometimes out in the field.

2. If your autism is not obvious, I would recommend working for a while before disclosing. The reason for this is that there is a lot of ignorance and stigma out there, and some may conflate AS with intellectual disability and treat you accordingly. By waiting, the employer gets to see what you can do, and you get to see all the areas which are going to cause difficulties. I believe the best time to disclose is once you’ve worked out what adjustments you need to be able to do the job.

3. Work around any communication deficits to minimise misunderstandings. For example, I do better with written than verbal communications, and better in person than on the phone. Fortunately, as I work remote from the rest of my unit, email is generally acceptable, but I’ve learnt that some types of message should not be sent cold in an email but require a phone call first, so one has to be careful. I always include greetings in the email. If I have to make a call, it helps to have thought about what to say (and in what tone) in advance. When receiving verbal communications I always repeat them back to check I haven’t misunderstood, and I write them down immediately so as not to forget (often I send an email confirmation also). If I miss what people are saying I just apologise (maybe saying I zoned out for a moment), and ask them to repeat it. Even if it makes you feel stupid, it’s always better to seek clarification than to make assumptions about what people mean.

4. I absolutely must have a ‘to do’ list to keep myself on track. This is not only a list of things to do but includes priority order and deadlines. I find I need to take a moment to properly think through priorities – it’s important not to just do tasks in the order they arrive but to make sure you can meet deadlines at least for the most important tasks – and give the boss a heads-up if you can’t or will need help. The list gets amended and updated as work gets finished and other work comes in. Just a pen and paper list works best for me, though I use an electronic calendar a lot too, including setting reminders for meetings which otherwise I’m likely to forget.

5. If possible, find someone who can act as your mentor or go-to person for workplace queries or issues. Ideally this would be someone who could also act as your advocate / protector in case of misunderstandings or clashes with colleagues. This may need to be by an informal arrangement – in my experience it can be hard to get this as a formal adjustment as the employer is wary of asking anyone internally to take on such a role, being outside of their normal job description.

6. Be aware of your anxiety and stress levels and take care of your mental health. I’ve had issues with some kind of anxiety or stress disorder the last few years, but was able to arrange an extra day off every fortnight, which helps give me time to decompress. It’s very common for autistics to need reduced working hours, so I would say don’t be afraid to ask if that would help prevent mental health issues. Other ways I regulate stress is by listening to music through my phone (if feasible) and going outside to walk around the block. Unfortunately, unlike the reduced working hours these strategies are not formal adjustments, so there’s no guarantee of being able to employ them as needed. Employers can be wary of making any formal agreements for anything looking like “special treatment” to other employees. They seem to find it easier to accept time off work as sick leave due to spiralling to a meltdown than taking a little unapproved time to prevent the meltdown in the first place. Whatever.

7. It’s important to join in with social activities as far as one is able, however being careful to keep one’s comments and behaviour appropriate to a work setting. This may well be the area where disclosure of autism is most useful, as without awareness of the condition it is too easy for people to mistake one’s intent and get a bad impression of you. Unfortunately, people will be less likely to view you as a key member of the team if you limit yourself to work communications and don’t socialise, while if you socialise inappropriately you may be seen as an insensitive idiot, but with selective disclosure to sympathetic colleagues there can be hope at least for some understanding.

Apologies for the long post but hopefully I got the main points there. I’m hoping that if any potential employer of autistic staff reads this it will give an idea of what kind of workplace strategies can help to keep us happy, healthy and motivated!

Taboo Topics – 3. Inappropriate Obsessions

I confess, I’m starting to lose motivation for this series of posts. (What on earth did I hope to achieve by airing all the worst Asperger faults in public??) But hey, I feel committed now, so might as well see this through. I only hope people find it informative or enlightening.

And what a gnarly one I have for us today! Trying to work out how to approach this one is giving me a fine challenge to start the new year.

Firstly, this one needs a really big disclaimer at the start, which is: please do not assume that all autistics indulge in the types and degrees of behaviours I’m going to be mentioning, we are all different. And in particular, please understand that spectrumites in general have no less moral sensibility than the general population. So, with that out of the way…

Topic 3: Inappropriate Obsessions

You’ve probably heard that autistics have their “special interest”. I dislike that term. For one thing, some of us Asperger-types do not stick with a single “special” interest throughout our lives, but shift from one interest to another much like anyone else. For another, and I’m going to step straight into the minefield of public opinion here, I maintain that they are not just interests but (to varying degree) obsessions. The truth is, we don’t have “special interests”, we have autistic obsessions.

What I hope to achieve here is understanding that, despite my using the term “obsessions”, these are not necessarily something to be hidden away or feared. Once again, understanding is the first step towards acceptance.

So why do we develop obsessions? It’s related to the way autistic brains are wired – and the way we cluster over at the “sytemising” rather than the “empathising” side of the E-S field. Our brains are, by nature, constantly working to understand the nature of the things around us by seeking patterns and categorising. The way we learn things is from the bottom up – gathering all the data and seeing if it clusters in ways which allow us to draw conclusions.

Take the stereotype of the child who will sit for extended periods reading the telephone directory. OK, yes, it seems weird. But consider all the connections a telephone book opens up to a brain at a certain level of development. The child may come away from their study that having learnt how to sort words into alphabetical order. They may now know the names of all the suburbs in their area, including their locations and postcodes. They may have started categorising surnames into the common and uncommon, into standard spelling and alternative spellings. Would it not be fascinating, to learn all this for the first time?

I believe what happens is that every time we make a connection between one piece of data and another, our brain neurones fire up in excitement. We get a dopamine hit. This is what keeps the child’s head buried in the telephone directory – it is almost an addiction.

Can you see why autistics have a tendency to get hooked on train timetables and route maps?

In the past, females tended to be overlooked for diagnosis because our interests were less “out there” – animals, maybe, or novels. Never mind that the girl has been learning the colours, weights and temperament of every breed of dog, or has been storing in memory the behaviour and dialogue of fictional characters to help make sense of the real world.

I’m not saying this method of learning is limited to autistics, but I think the autistic brain tends towards a stronger craving for it. Many of us can drop easily into a state of hyper-focus. This is a bit like the concept of “flow” – being so completely absorbed in an activity that one is aware of nothing else. From personal experience, I would even postulate that we cannot maintain our mental health without regular ‘fixes’ of our obsessions.

Problems arise when we develop an obsession which is inappropriate in type and/or intensity. It is very common, for example, for a young adult to get into trouble at work for spending too much company time indulging an obsessive interest. This could be enough to lose them their job.

There can be legal consequences of inappropriate obsessions also. There’ve been famous cases of transport-obsessed autistics stealing trucks or trains out of their need to indulge their interest. (For an example, check out a guy called Darius McCollum). Unfortunately, it is quite common to develop an obsessive interest in a particular person. Combined with autistic social and empathy deficits, this can lead to stalking and harassing behaviours (though often with no intent to harm).

You can see why this is a taboo topic. There is a very real, and probably justified, fear that to admit the existence of autistic obsessions would be to paint us all as undesirables and potential criminals.

What I would point out is the flip side of obsessions. The classic example would be Albert Einstein. However gifted he was at maths, would he have developed the general theory of relativity without a hefty dose of autistic single-minded focus? What about Greta Thunberg? Do you think she would have achieved global recognition without an autistic degree of obsession over climate damage?

What I’m saying is that autistic obsessiveness, of itself, is neither good nor bad. It acts a mental driver, pushing a person to a deeper and more intense level of application to whatever has grabbed their interest – whether that is higher mathematics or the novels of Jane Austen or the history of the diesel locomotive.

This is a power, a gift to society, if only people had the wisdom to see and harness it. The challenge is only in the recognition of autistic obsessions when they occur, and the steering of them in positive directions.

My sad conclusion is that society still has a long way to go. Maybe we’ll be getting somewhere when the rail companies and legal authorities decide not to lock up the would-be train drivers turned thieves like Darius, but to employ them instead.