Review – When the Body Says No

I just read this book “When the Body Says No (The Cost of Hidden Stress)” by Gabor Mate. It’s a bit old now, published 2003, but I hadn’t seen it before.

This is probably going to be the shortest review ever – because I can’t decide whether the content is profoundly wise or a load of codswallop. I’m actually hoping you, my lovely readers, would read the book and offer your own opinion in the comments.

Anyway, the premise is that modern medicine is problematic in separating the mind and the body, or mental health and physical health. The author uses case studies of patients to illustrate how aspects of their personalities and the ways in which they deal with life stresses may have contributed to the development of physical disease.

So far so good; I know from experience that mental and physical health are connected. The book clarifies how internal stress affects all kinds of neurological, endocrine (hormonal) and immunological pathways and thus can contribute to the development of disease. I can see this might be particularly relevant to autoimmune conditions such as multiple sclerosis (MS), Chrohn’s disease and rheumatoid arthritis, which together with cancers and motor neurone disease / ALS are the main topic of his case studies.

I was also interested in his thoughts on why some people with genetic or environmental risks for cancer and alzheimers disease go on to develop disease and some do not. I have sometimes wondered whether many of us might be carrying around early cancerous changes, and this book explains that we rely on fully functioning immune systems to keep these in check. And certainly it does seem to me as though doctors are still trained towards treating physical diseases without wholistic consideration of the life stress and coping mechanisms of the sufferer.

One thing that I am wary of, however, is drawing any conclusions from the few case studies examined in the book. In places, it reads as though the author is linking particular types of coping style with certain diseases, almost pointing to a “lung cancer personality” as being someone with repressed anger, a “rheumatoid arthritis personality” as being someone who looks after others and shows no weakness, or an “ALS personality” as being a driven perfectionist.

To me, that goes a bit too far. Extracts of his interviews with patients are presented which do illustrate the personality traits and coping mechanisms at play – but I had a niggling feeling that if one was to dive into the childhood/ family experiences of any one of us in a similar fashion, one would be able to find some kind of unhealthy coping mechanism. Do people even exist who have such maturity of outlook as to remain emotionally regulated through any life stress, and able to maintain the perfect balance of security and autonomy in their relationships?

No, I don’t think so either.

On the whole though, I found this book very interesting. It prompted a bit of soul-searching of the “do I have a problem with repressed anger?” type. But there’s no harm in that.

In fact, the book noted that positivity of the kind which stops us from examining the negatives in our lives can actually be harmful and lead to poorer outcomes. It is only by examining our own repressed emotions and harmful coping mechanisms that we can bring about change and healing.

OK, so not such a short review after all – and I’ve now decided I liked the book, even if I’m a bit wary of some aspects. Thoughts, anyone?

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Inter-speak

Is this just me getting old, or are the internet and social media creating new words and phrases at an incredible rate? I frequent an on-line forum sometimes and all the talk is about the “woke generation” and “cancel culture”, terms which would have meant nothing to me one or two years ago.

I nearly called this post “Newspeak”, referring to a newly developing language – but of course that’s been famously used in the novel 1984. Newspeak was an imposed reduction in vocabulary designed to prevent people from being able to verbalise any thoughts deemed unacceptable by the authoritarian state.

What we have today is the opposite. Social changes driven by the overconnected masses are leading to the development of concepts which simply did not exist in the prior history of our language. New words are needed.

So, on the web, “influencers” are “gate-keeping” in case we are being “transphobic” or a “TERF” and “misgendering” people. In the US, the “MAGAs” and are still listening to the “fake news” delivered by the deposed “POTUS”. Globally, “anti-vaxxers” and those “covidiots” who refuse to practice “social distancing” are imperilling our goal of “herd immunity”. And, as it turns out, I’m “on the spectrum” or an “autie”, while most of you are “neurotypical”. It’s hard to keep up… but isn’t this linguistic-conceptual expansion actually quite wonderful?

I’ll tell you what brought this to mind. (Do I need a “trigger warning” on this part? I’m going to mention sexual assault, but only in an academic, linguistic sense).

I was just noticing that the news today was filled with debate over sexual assault allegations in the government. This is another of those things that society (and especially the “#metoo movement”) is becoming more open about discussing.

And it occurred to me that we don’t have an appropriate word to describe the women involved. We used to call them “victims”, but that fell out of favour for obvious reasons (though we still refer to “victim blaming”?) Now we have “assault survivors”. But does that not seem wrong, or at least illogical, if used to describe someone who escaped an experience that was traumatic, but unlikely to be fatal?

So I was left scratching my head, searching for the right word. Perhaps “assault sufferers” would be a better term? It would at least imply a recognition that a level of suffering may continue past the event itself. Yet it seems clunky.

But then I realised my linguistic failure didn’t matter. There are thousands (maybe even millions?) of people out there watching the same kinds of news and having the same kinds of thoughts. The odds are, within a year, Inter-speak will have provided a new word that fits.

Modern interwebbed society, eh? Equal parts batshit crazy and kind of wonderful.

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.

Meteoropathy

Well, I googled it, and what do you know – sensitivity to low pressure weather systems is actually a thing.

Apparently, reduction in barometric pressure can lead to migraine headaches, painful joints, sluggishness and feelings of depression. Sounds about right. Some people are more sensitive to it than others. Meteoropathy is what the scientists call it when they induce it in their lab animals (poor mice!)

See, I’m not a hypochondriac after all!

Watercolour therapy

So its the end of my holiday – unfortunately it was a wet one with a low pressure system sitting over the area for the best part of 3 weeks. I got ill, too, which at first I thought was a cold but as it lingered interminably I decided it might have been a physiological reaction to the low pressure system. I get that with the severe tropical lows, I go all tired and headachy and miserable, like the onset of the flu. (It’s a genuine feeling of physical illness, not just a psychological thing). Does that happen to anyone else or is it just me??

Anyway, the silver lining t0 the rainclouds was that in looking for indoor activities I got myself a colouring book and a watercolour pad and paints. It’s been fun engaging the other side of my brain for a change. This is my first attempt with the watercolours, it’s our dog enjoying a bone in the garden.

She doesn’t actually look quite like that – my artistic vision being limited by my lack of skill! But not bad for a first attempt?

I hope I have time to do a few more before I get stuck back into work.

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!