The Asperger Superpower

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There are, of course, many differences between Greta Thunberg and me.

For a start, she learnt she has Aspergers when she was a child. She was probably told what it was, how it might affect her life, and she’s smart enough to have got the picture. At only 16, she’s obviously been through all the stages – the denial, the anger, the bargaining, the depression – and already come out the other side to acceptance.  Whereas I was well into adulthood before realising that whatever was wrong with me was not getting any better, and it took another decade or so to find a name for it. As far as acceptance goes, I’m still sanding the rough edges off my self-image.

Our personalities are divergent, too. While Greta has already decided that being different is OK and she doesn’t care too much what others think of her, most of my life has been spent trying to fit in and be normal. At school I was always a B grade student, partly because I never got my act together on the concept of homework, but also because why work to get A grades, when all it will do is make you stand out and invite jealousy and resentment? No, thanks. And I certainly didn’t have Greta’s level of determination and drive at that age. There were things I cared about, but not enough to throw myself completely into the cause as she has done.

So when Greta claimed Aspergers was her superpower, my first thought was to scoff. That’s what they tell newly-diagnosed kids, to prop up their self-esteem (or in the hope they might grow up to be Einstein). Who does she think she’s kidding?

Yes, I know, shame on me for being cynical. And for not acknowledging something important, which is that the condition does convey advantages in some areas. And yes, maybe I should be celebrating the strengths as much as I vent on the weaknesses. So this post is intended to make up for that.

The hard part is in explaining just what the Asperger superpower is, or what it does. How does it work? Having Aspergers doesn’t give one any more insight into the subconscious workings of one’s brain than anyone else, so it’s a bit like the old adage of explaining sight to a blind man.

What I can say is, those who question how a 16-year old can be qualified to talk on climate change really don’t understand. Personally, I have no doubt that Greta would be capable of not only reading and understanding scientific reports, not only identifying and extracting the important points, but of incorporating that data into the complex geopolitical model of the climate change debate that is being constantly updated and refined in her head. That’s the essence of the superpower.

The thing I find amazing is that this tiny autistic girl can then walk amongst thousands of shouting protestors at a climate rally and maintain enough composure to be able to make a speech. With perfect diction, in a foreign language. How crazy is that?

Incidentally, those who say she ought to smile more don’t understand, either. It’s pretty clear that the way she gets through public engagements is by focusing on what needs to be said and ditching anything distracting from her purpose. For autists it takes a lot of brainpower to remember under which social circumstances one is supposed to smile. (Personally I do it the other way around and try to smile all the time, which is usually OK, until someone tells me their dog just died. Woops.)

But I digress. The point I’m making, in a roundabout way, is that we shouldn’t be seeing the condition as either a superpower or a disability. It is not either/or, it is both.

While Greta is happy to claim the superpower aspect, she’s too canny to publicly admit to the downsides. But it’s implicitly there, if you read the full quote of her tweet:

“I have Asperger’s and that means I’m sometimes a bit different from the norm. And – given the right circumstances – being different is a superpower.”

It’s in the qualifier, the “given the right circumstances”. The trick to being successful with this condition is to find a niche which makes maximum use of the superpower aspect and minimises the disability aspect. It’s about working out the best way to use the cognitive tools we’ve been given, within the limitations imposed.

So now, having thought about it, if anyone suggests to me that Aspergers is a superpower, I might be inclined to agree. But I might also point out, to avoid any resentment, that just like superpowers in the movies, Aspergers comes with downsides too. Since when did possessing a superpower ever make anyone’s life any easier?

Take care, Greta.

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Review of ‘House Rules’ by Jodi Picoult

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In the 2 weeks or so since I read this, after a bit of cogitation on whether or not I liked it and whether I had anything to say about it, I’ve decided that yes, I did, and yes, I do.

The story centres around Jacob, a young man with Apsegrers/autism and an obsessive interest in crime scene investigation and forensics. When his support worker disappears and is later found dead, Jacob is accused. We don’t discover exactly what happened until near the end, so there’s an element of a murder mystery to this novel, but the reader can make a good guess at how things might have gone down. The strength of this novel is not in the murder mystery itself, but how the accusations against Jacob play out on a personal level to the characters.

Certainly the author is a good writer, I was impressed by her ability to tell the story through the first-person viewpoint of several characters. Emma was particularly nuanced, perhaps being closer to the author herself, but Jacob and Theo were well done, too.

It struck me that the author was brave to portray an autistic character in a first-person point of view. There are some with a “them and us” mentality, viewing Autism as a minority subculture, who would take offense at a neurotypical attempting to write an autistic voice. I say, good on her for giving it a shot. Autistic people are, first and foremost, people.

And this is, primarily, a novel about Aspergers/autism. The author has obviously done a huge amount of research and the novel is heavy in AS details (which I can forgive, as the condition is nothing if not complex), and this is the driver of the plot, too. In essence it revolves around the way an autistic person’s view of himself can drastically differ from how he is viewed by his family, by outsiders, and by the legal system. It’s about the difficulty of finding out the truth and obtaining justice when dealing with someone with a literal mind, communication difficulties, and a condition so many associate with a lack of empathy. In that sense, this is an important novel.

While I applaud the author for tackling this subject, there were aspects with which I was uncomfortable.

Firstly, I was not convinced about the way Jacob’s autism presented. Even knowing the wide variety of trait severity out there, and knowing that some with a sky-high IQ can still struggle significantly in daily life, the dichotomy between trait severity and IQ in Jacob seemed too extreme. There’s a reason why classic autism and Aspergers Syndrome were once separate diagnoses, and I believe that intellectual capacity generally does help to moderate behaviour. So while I agree with the author that a child diagnosed with classic autism might potentially become an adult with Aspergers Syndrome, in Jacob she seems to have mixed the two, presenting a young man of great intellect who retains an absolute rigidity over things like food colours, and still has the uncontrolled screaming kind of meltdown.

Since Jacob’s meltdowns and his intellectual abilities are both necessary parts of the plot, my doubts detracted from the realism of the story and induced an element of disbelief in the legal proceedings which might otherwise have felt more dramatic.

I was also a little uncomfortable with the way in which Emma tackles her son’s autism, by placing him on a gluten and casein free diet and feeding him some very expensive supplements. Multivitamins and fish oils I can understand, but he also gets liposome-enclosed glutathione, an oxytocin nasal spray and daily injections of vitamin B12.

This is certainly consistent with Emma’s character – the mother who will do whatever it takes to improve Jacob’s life and relieve the family of his worst behaviours. I get that. What I’m uncomfortable with is that the benefits of these treatments are presented in the novel unchallenged. She tells us that the nasal spray and the B12 shot help with his anxiety, and average reader (who hasn’t studied the scientific literature and does not know that there is in fact no scientific consensus that such treatments have any benefit whatsoever) is likely to take this as gospel truth.

On reflection, despite these niggles, I’ve decided that I like what the author is doing here, overall. And it was certainly a very readable story, keeping me entertained for a couple of days. Recommended.

 

Always a Reason

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What the hell am I even doing?

That was my thought as I sent an email to work, requesting a special consideration for my ASD.

Just WTHAIED?

Considering I only just got the permanent job and am still on probation, it felt stupidly impulsive. And I can be impulsive, I’ll be first to admit that, but I’m pretty sure I’m not stupid. Yes, okay, I now accept that I have a developmental disorder, that I might not be quite up where I should be on a social and emotional level, but I’m not stupid. There’s always a reason.

This one dates back 5 years. Being a ‘live-in-the-present’ sort of person, I rarely think back to the past and have a terrible memory (probably atrophied from lack of use 😀 ), so I can’t recall exactly what happened. All I know is I took time off work because I’d lost the ability to cope, I was burnt out. And what I do remember was not understanding how that could have happened, because I actually enjoyed my job, I liked my colleagues, and I wasn’t under a particularly heavy workload – it just made no sense whatsoever.

Now, after reading about others’ experiences with autistic burn-out, the picture is clear. This is what happens to those of us who remain undiagnosed by mid-life, the ones with mild traits, who’ve learnt to mask their difficulties and live a normal life. Normal activities for others can be uncomfortable for us, they create a little extra stress. Over time, it builds up. Maybe I’d just been juggling too many projects, going to a few too many client meetings, maybe I’d lost my head altogether and attempted to engage in verbal negotiations. Repressed autism demands payback.

Well, now I have another job, and I’m enjoying it even more than the last. The work is right up my street and my colleagues are great. I felt comfortable enough to disclose my ASD to my line manager and his reaction was just like my parents, a non-plussed: ‘but there’s nothing really wrong with you, is there?’ Which is good, because that’s where I want to be at, and how I want to be perceived.

Except…

Sitting there at the back of my mind is fear. Not fear of how I might be perceived, it’s greater than that. It’s fear of losing it all – the job, the colleagues, my self-esteem, everything, through another burn-out. I’m willing to do just about anything to avoid that.

So what can I do? I figured the only way is to increase self-awareness of my limitations and do my best to stay within them. I need to recognise the situations that cause me stress and instead of just “sucking it up” as I would have in the past, I need to learn how to avoid them. I have to stop pretending I can do the same as everyone else without consequences. Basically, I have to loosen up my self-control and allow myself to be more autistic.

So that’s why, when something at work was bothering me, when I was put in a situation which I felt I should have been able to handle – which anybody else would have been able to handle – but which was actually stressing me out, I gave in. Well, I tried making it a suggestion. Then I tried outright asking for what I wanted. And when nobody was getting it – because how could they? It wasn’t a problem for anyone else – I sent an email essentially saying, ‘I’m on the spectrum, this is an issue for me, and I need your support’.

It felt bad, having to do that. ‘Uncomfortable’ doesn’t even begin to describe the feeling, the uncertainty and vulnerability. The trouble is, I know how bizarre this must seem to others, that someone who seems to be normal and capable might suddenly start claiming to be autistic and in need of special treatment. Too weird, right? It wouldn’t surprise me if they start thinking me to be – I don’t know –  self-serving? Attention-seeking? Mentally unstable?

But this is what it is to have ASD, isn’t it? Being Asperger is to be chronically misunderstood. We do things that are perceived as odd and defy expectations. What people don’t understand is that, just because we have trouble expressing why we do what we do, just because it makes no sense in their eyes, doesn’t mean there’s no reason.

There’s always a reason.

ASD and Acceptance

So, it’s been a while. I’ve been a bit distracted over the last 3 months or so, getting my head around the concept of being on the autism spectrum. Not because that’s changed anything about who I am, but because it’s forced me to confront a few uncomfortable truths about myself, which had never before been at the forefront of my mind.

Right now, I really want to stop thinking about it, to ‘get over it’ and get back to more productive pursuits (like writing, yay! – Thanks, Alison, for reminding me how much I enjoy even talking about writing). But I’m feeling like I need one more post on the topic of ASD. Maybe just to set down some of what I’ve learnt, and to get things clear in my head, so I can move on. So here are my thoughts. Oh, and this is going to be a long one, I’m afraid… and mightily self-absorbed. More like an essay than a blog post (you have been warned).

So, first off, how did this happen? How can someone go their whole life without realising they’re on the autism spectrum?

I think it’s because, in the past, I had little self-awareness of the sort that lets you see yourself as others see you. In my teens, I was pretty much oblivious to my own social ineptitude, chalking my mistakes up to immaturity. In my twenties, I read about the concept of emotional intelligence, EQ, and realised I had a deficit, but still thought I was capable of change. In my thirties I was having babies and emigrating and was too busy to think about anything much.

It took me forty-odd years to get to the point of realising that, not only was I failing to behave towards others the way I thought I ought, the way everyone else did, but there were limits to how much I could change that, however much effort I put in or however many years’ experience I gained. Maybe I needed those decades of trying to be like everyone else and not quite succeeding to recognise that if I hadn’t outgrown my limitations by then, I probably never would.

So that’s how I came to the realisation that there was a hard-wired difference in my brain. When Aspergers ticked a lot of boxes, that led me to seek a diagnosis. But to have it confirmed, well, the effect on my psyche was unexpected. And, well, kind of brutal.

I guess I thought it would be a relief to know – and yes, it was. For a while. Until I started reading about ASD and consciously noticing my own behaviour. Like noticing how truly inept I am at explaining myself verbally (or, horror of horrors, over the phone). Like at the Spec Fic group, when we’re given a writing prompt, noticing how others can write a story off the top of their heads and I… well, I just can’t. And realising that the reason I clash with my Director at work is because he has a top-down thinking style (decide on a solution and design towards it), whereas mine is an autistic bottom-up (gather data, analyse, and see which solution pops up). And however much I ought to know the importance of not disrespecting one’s boss, I can’t bring myself to see his way as right. And, worst of all, I can’t stop myself from telling him so.

Is there anything I can do about any of the above? No, not really. This is what makes it autism and not just learned character traits – these behaviours are basically out of my control.

So… yeah. I think I’ve discovered autistic frustration, too.

On the other hand, the more I learn about ASD, the luckier I feel. It’s such a wide spectrum in terms of the severity of traits, whether mind-blindness or executive dysfunction or hypersensitivity, and factoring in co-morbidities, in all respects I’ve been incredibly fortunate. Aspergers is so much easier to deal with than classic autism, and with a decent IQ and no learning difficulties or sensory sensitivities to speak of, I’ve had it remarkably easy.

Even amongst those at the mild end, it’s sobering how much a minor brain difference can potentially affect their lives. There are some shocking statistics out there about levels of anxiety and depression amongst those on the spectrum. And long-term unemployment rates are horrendous. They’re so really, truly, awful, that I’m furious at the injustice of it, with a passion I haven’t felt about anything since I was an undergrad.

Seeing how much easier my life has been compared to others on the spectrum, sometimes I wonder if I haven’t got it all wrong, that maybe what I’ve got is not the same thing at all. But then I start interacting with the people in my life and I start noticing my own thought-patterns and behaviours (because once you start it’s hard to stop), and, yep, it’s clearly the same thing. How it affects people, though, is… well, it’s complicated.

I’ve been reading a bit about ASD and there’s a particular book that really made an impact on me. It’s called “Autism and Asperger Syndrome in Adults” by Dr Luke Beardon, and in it is presented a simple principle:

Autism + Environment = Outcome

In other words, the inherent severity of autistic traits is only part of the picture.

Summarising the concept in my own words, if one accepts that autistic people think and experience the world differently to neurotypicals, and that most social environments have been set up by and for neurotypicals, it’s hardly surprising that an autistic person might feel out of their element and suffer stress and anxiety.

In the sphere of work, for example, there might be a role that would be perfectly suited to an autistic person’s talents. But with recruitment practices relying on networking and multiple interviews, with HR staff acting as corporate gatekeepers, and with the modern emphasis on communication skills, flexibility, and teamwork, that person is unlikely even to get through the door.

But I’m digressing. As angry as I feel at the employment situation for those on the spectrum, what I was trying to say is more general, related to the environmental factor.  The reason I’ve had things so easy, I believe, is not only the mildness of my traits but also having been brought up in a favourable environment.

My parents had a lot to do with that. Looking back, they were amazingly tolerant – I never, ever, felt that they were disappointed in me, or they might have wished for a daughter with a more conventional personality. As a child, I felt loved unconditionally. With all the self-esteem issues that go along with ASD, that has to be the greatest of gifts. Somehow, the way my parents brought me up has given me a deep sense of security and a belief in the inherent goodness of other people.

Later, when I started out at work, my colleagues were also remarkably tolerant. In hindsight, engineering was a good choice. I was working with smart, well-educated people, who were secure enough in their own worth not to engage in bullying or passive-aggressive behaviours. If you can forgive a (slightly sexist) over-generalisation, the fact that most of my colleagues were male may have contributed to an environment that was less attuned to social mis-steps. These were guys who understood the value of cutting out the gossip and getting on with the job.

Because of my parents’ acceptance of a quirky daughter, I survived to adulthood without major issues. Because of colleagues’ acceptance, I’ve maintained employment for most of my life. And because of my husband’s (somewhat begrudging) acceptance, I get a certain amount of leniency with my behaviour at home.

I like to think this goes both ways, and an accepting environment for me has benefits for others. It gives me space to do what I do, to use my talents. At work, apparently my ability to focus exclusively on a task for hours on end is an autistic trait, too, but of the good variety. There are odd little things I seem to find easier than others, like looking at a roadside slope and sketching it more-or-less to scale, like picking out landslide hazards faster. And in writing groups, does ASD have something to do with my ‘feel’ for stories – my quick grasp of plot patterns, and keen eye for errors? Probably.

So, when it comes down to it, I’m not complaining.

I guess what I’m saying is all about the importance of acceptance. While I know I’ve been incredibly fortunate in having ASD in its mildest form, and having the intelligence to adapt to it, that’s not the whole story behind my relative success in life. And while I know life is incredibly tough for those facing the challenge of the more severe forms of autism, I’m inclined to believe this principle holds for them, too. That is, that everyone has the potential to develop skills that are useful to society. To give those skills space to grow means creating environments that in which the person’s worth is recognised and respected, they are loved unconditionally, and above all, accepted.

Yeah. That’s all I wanted to say.

The Square Peg

This post is going to branch off a bit from my usual topics of writing, book reviews and so on, and into a personal concern. This is more to get things off my chest than anything else, so basically I’m writing it entirely for my own benefit, but I guess it might be somewhat enlightening for people who know me.

Diving straight in at the deep end, what’s been on my mind a lot recently is that I’ve come to believe (or very strongly suspect) I’m on the autism spectrum. Or more specifically, that I have what used to be known as Asperger’s Syndrome.

Obviously if I do, it’s pretty mild, considering I’ve got to this stage in my life before realising what the issue was. And when I mention this suspicion to people, and my desire to get a formal diagnosis, the general consensus is: “it’s just your personality, Kay” and “does a diagnosis matter”?

I can see their point, and yet I feel that a diagnosis does matter, it matters a lot. The difficulty I’ve been having is in explaining why, even to myself.

So I’m going to have a crack at it. Let me put it like this:

Imagine, hypothetically, that you’ve always had difficulty getting up in the morning.

It’s a common problem, right?

So what do you do? You might be careful about what time you go to bed and how much sleep you get. You might set alarms on your watch and your phone and your clock/radio. Thanks to these, you manage to drag yourself out of bed and get to work on time.

The trouble is, every day you feel tired, so very tired. You wonder how on earth everyone else manages to look so bright-eyed and alert. You wonder why it is that you collapse in exhaustion when you get home and other people still have the energy to go out. It doesn’t make sense.

Eventually, you start getting the picture. You’ve tried everything you can think of to stick to the same schedule as everyone else, to fit in with other people’s timetables, and still you struggle. So maybe this is just the way you are, the way you’ll always be. You just have to work around it.

So you ask your boss to let you start later in the day, making up some excuse about needing to take your kids to school. Because how can you tell him that you simply can’t get out of bed in the morning?

You ask your husband to take over evening chores, so that you can concentrate on your supposed “health routine”. Because how can you tell him you’re just too tired, even though he works longer hours than you?

And all the time you feel guilty and inadequate that you struggle to cope with such a simple thing as getting up in the morning, which everyone else takes in their stride. And you worry over how many allowances your boss and your husband are willing to make.

Then you discover there’s a recognised disorder called “sleeping-late syndrome”, which fits your situation perfectly, which explains everything.

Would you seek a diagnosis?

Okay, so obviously, autism spectrum has nothing to do with sleeping late (I just enjoy thinking in metaphor). But the fact is that the issues that affect people with mild autism are, to a certain extent, issues that everyone has to deal with. So an autistic person has difficulties with social interactions, but doesn’t everybody, sometimes? So we’re bad at remembering names and faces. That’s not so unusual. So we might get overwhelmed in noisy, crowded places, but why not just avoid them? On the face of it, these issues don’t seem like a big deal. And therein lies so much misunderstanding.

Unfortunately, these seemingly minor issues can actually have major consequences. Because what you don’t see is the amount of effort even a mildly autistic person is putting in, every day, to function in society at a level which would be considered ‘normal’. There’s constant pressure to perform in a way that goes against their nature, just to fit in.

And what you may not be aware of is that every day a person with Aspergers walks the edge of a precipice. It only takes one inappropriate comment in an important meeting to lose that job. It might only take one ill-judged remark to wreck a friendship, or one serious meltdown to destroy a marriage. It’s all too easy for an autistic person to find themselves both jobless and socially isolated.

A presentation I saw on youtube by Michelle Vines (author of ‘Asperger’s on the inside’) made a lot of sense. She said that autism is a classic case of the square peg in the round hole. This rang a bell with me, because I feel as though I’ve spent much of my adult life being that square peg and trying to hammer myself into that round hole.

A few years ago, after coming way too close to a breakdown, I finally recognised how much stress being ‘normal’ was causing me. I threw away the hammer. No more forcing myself into situations that made me uncomfortable.

Unfortunately, that didn’t work well at all, because when you’re married with kids, you have responsibilities which mean that retreating into one’s autistic comfort zone is simply not an option.

Basically, I was stuck, halfway in and halfway out of that stupid hole, unable to hammer myself further without breaking, and unable to retreat.

Realising I’m (probably) on the autism spectrum has been a relief. Now I understand that however hard I try, my autistic brain is never going to be completely compatible with ‘normal’ expectations, I’m in a better position to accept my hard-wired limitations.

While I have no intention of using ASD as an excuse for the worst of my behaviour (and I hope people will give me a kick up the backside if I try), maybe I can ease up on the feelings of guilt and inadequacy when I do get things wrong.

Which is not to say this awkward peg can never get through that hole. Here’s how I imagine having a diagnosis would help:

  • It would allow me access to the Asperger community. Already, from reading about the way others on the spectrum deal with the same issues I have, I can see positive changes I can make in my life – and this time they’re changes that work with autistic traits and ways of thinking, rather than against them.
  • It’s belatedly occurred to me that sometimes I ought to ask for help. When I do so, if I have a diagnosis, I’ll finally have a way to explain the true nature of the issue, without being met with a dismissive “doesn’t everybody feel like that sometimes?”
  • Hopefully, I might get help that works for me, rather than being presented with solutions based on neurotypical expectations. And if that means sometimes asking society to adjust to my needs, instead of the other way around, so be it.

Maybe, by getting a formal diagnosis, I’ll be able to swap that hammer for a chisel, and start reshaping that round hole into a square.

 

(Of course, I might not get a diagnosis at all, but that’s another topic for another day…)