No, I really *really* can’t get the train…

I don’t often bother talking to people about my sensory issues and my intolerance for daily living,

After all, everybody at some point feels too hot, or too cold.  Everybody feels pain.  Most people have a food they don’t like, or a smell, or a texture.  And most people at one point have been failed by their senses and wished that they were more or less sensitive.  But what nobody can really ever know, is how someone else experiences their environment, how someone else responds to and is affected by exactly the same stimulus.

Sometimes I need to explain, but I bite my tongue and proceed with caution.  I’ve learned the hard way that some people will just hear ‘flaky’, or ‘overreacting’, or ‘awkward’, despite my best efforts to describe things.

Ok, so nobody likes it when the train is late.  And nobody likes being shoved into the armpit of another passenger.  Well imagine if disruption to your expected routine would ruin your whole day, and possibly your week?  Or if having to talk to strangers (or the possibility of having to talk to strangers, or even being in the same space as strangers) made you so stressed you might not accomplish anything else that day?

I really do want to see you, but I really can’t take the train, not today.

© Catastraspie, 2014.

Fright Train

You see Thomas…


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Response to Richard Dawkins’ pseudo-apology @RichardDawkins

Following a rather ill-considered tweet about aborting fetuses who are suspected to have Down Syndrome, Richard Dawkins issued what I would consider a pseudo-apology, given that nowhere did he genuinely say sorry, instead, he explained why he said what he said.  No more, no less.

I would like to point out that he omitted at least one category of ‘hater’, as he referred to the people who took objection to the content of his tweets.  This category would be people who believe that someone’s value as a human being is not determined by the absence of disability; those of us who do not think that people with perceived ‘disabilities’ (however the individual wishes to define themselves) are a drain on society, to which the solution is abortion.  Those of us, who, perhaps ourselves have disabilities and don’t think that ableism should be passed off as ‘morality’.

I found myself wondering why Professor Dawkins had focussed on one particular condition, and what his views might be about people with other types of conditions.  There are plenty of people who do not have Down Syndrome, but who, through congenital conditions or acquired illness or disability, require additional care beyond the age of childhood.  Does Professor Dawkins think that all people who require this additional care, who might put a ‘burden’ upon their parents, or upon statutory services, are less deserving of life?  He uses the argument that he has a desire to increase happiness and decrease suffering.  Does he think that people with less than perfect health are incapable of being happy, or that disability automatically means suffering and only suffering?

I also ask whether Professor Dawkins thinks that a woman who reaches the heart-wrenching decision to abort her baby, for its own alleged benefit, or because she doesn’t think she could or should raise a child with increased needs in her current circumstances, does not experience suffering?  Perhaps in the form of crushing and crippling guilt for the rest of her life.  What does that do for the sum of happiness and suffering?

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2013 in review

The stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 11,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

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The Xmas Grinch… Asperger’s at Christmas

My partner lovingly calls me the Xmas Grinch, because each year I am seemingly reluctant to get in the spirit of things.  It got worse the Xmas I was writing up my PhD, when I had a deadline of 22 December, and I completely banned Xmas altogether until I had handed in.  That year made for some frantic shopping!  I have step-children who are all old enough to appreciate Xmas now, and they have also noted my lack of festive cheer.

It’s not because I don’t like Xmas, I really do.  I have very fond memories of Xmas growing up.  My parents made a lot of effort to make it special and I can remember putting out carrots for the reindeer, and making a Santa Trap (a string with bells on to wake me up when he came into my room – unfortunately I shared my plan with my parents and it didn’t go off for some reason…).

I think the problem is that once you get to be an adult, and Xmas is then your responsibility, it stops being so much fun.  If you think that Xmas is supposed to be all about spending time with family and friends, but you’re not the sort of person who (for whatever reason) enjoys spending lots of time in social settings, and you throw in some sensory issues, it can be challenging.  And not in a way that is easy to explain to people who really enjoy it!

Some reasons why I find Xmas difficult:

  • Flashing lights everywhere
  • Obligatory office Xmas parties (attending or declining can be equally difficult)
  • Overcrowded shopping centres months before Xmas
  • Having to pack a lot of friends and relatives into a short holiday
  • Not knowing how to choose a good present for someone
  • ‘Scratchy’ Xmas decorations
  • Sending lots of cards but not getting many back
  • Extra chores and responsibilities with no reduction in regular commitments
  • Having time off work, but not really getting to do anything relaxing
  • Music with jangly instruments in public spaces
  • Overcrowded restaurants that require a booking and have a restricted menu
  • Changes in daily and weekly routines
  • Having to fake enthusiasm for my Xmas plans

To my credit, I have put up a tree this year, and a bit of tinsel, but I haven’t written any cards yet.  Luckily, I do look pretty cute in a Santa hat, so I may get away with it for another year.

© Catastraspie, 2013 (aka the Xmas Grinch)

Upside Down Xmas Tree

Upside Down Xmas Tree (Photo credit: Wikipedia)

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Superpower envy!

Normally when I think about Aspies and being Aspie, I think of us as the ones with superpowers – being logical, being exact, being effortlessly quirky. However, this week I learned about a neurotypical (NT) superpower that made me green with envy – that of being able to literally sense other people’s emotions.

I knew I had heard that NTs were supposed to ‘know’ how other people felt without being told, but I’d never really thought about *how* they did it. Then when my counsellor was telling me that I seemed a lot brighter and more relaxed than the last few times she’d seen me, she went a bit further.  She said that she feels my emotions – she *FEELS* them!

She can sense extra or different emotions that she knows aren’t hers, in something called counter-transference (which I had also heard of, but also not given much thought).  I don’t think I am quite conveying how much that blew my mind, my eyes nearly went out on stalks.  It was like she’d told me she had x-ray vision and could see through walls.  I can barely detect my own emotions, so the concept of feeling someone else’s, knowing they’re someone else’s, and being able to explain them to the person concerned, seems amazing to me!  It also made it much more real than just being told ‘NTs know how each other are feeling’.

I know counsellors have extensive training, but this is something I would be incapable of doing even after a lot of training.  I might become a little better at not flying off the handle when my partner comes home irritable, and I become irritable because I have somehow ‘caught’ it off him and attributed it to myself (that’s the closest example I could find to think about what it might be like).  However, I could not do what she does and I really wish I could!  I need the step by step walk me through it – tell me, show me or make it obvious.

I spend a lot of time worrying about how other people are feeling, and whether they are ok, so it would really help me to understand and look after those I care about.  If I seem to ignore others’ emotions, it is because I don’t know how they are feeling, not because I don’t care.  This discovery has definitely put to bed anything wonderings I had about whether I should have trained in a clinical role, it would be like trying to teach dancing with no sense of rhythm – possible, but why would you?

Now I’m not saying that all NTs can necessarily perform this feat, well or at all – I’ve had plenty of well-meaning but completely clueless people tell me (incorrectly) how I am feeling (I’m also not saying that no Aspies can do this, because not all Aspies have alexithymia and they might have better spidey senses than me…).  But I do hope that people who can feel others’ emotions (I am deliberately avoiding the word ‘empathy‘, you may have noticed) realise they have a superpower, and don’t assume everyone can do it.  And that they use their powers for good.

Anyway, I know I haven’t written for a while (I’ve written drafts, but seem to have become afraid of pushing the ‘publish’ button), so I thought I would share that with you.

© Catastraspie, 2013.

Deanna Troi

Deanna Troi (Photo credit: Tram Painter)

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Figure 2. Integration paths used in proving th...

Figure 2. Integration paths used in proving the sufficiency conditions for compatibility. (Photo credit: Wikipedia)

I’ve been told my partner and I aren’t an obvious match.  We’ve even joked about it ourselves.  He used to say that we were opposite ends of the spectrum, but since he has also now been diagnosed as Aspie, that joke doesn’t work anymore!  We have very different backgrounds and occupations, and apparently to some people those things are important.  I guess they don’t take the time to see the depth of understanding, that we think the same, that we share the same hopes and dreams, how we use our complementary skills to fill the gaps the other one might have.

The other week something happened that to most may have seemed quite trivial, but which was about to have a massive impact on me.  I didn’t have time to make that much fuss, I think I was still processing it.  But before it had a chance to really mess up my mojo, my partner sorted it out.  Not because he was supposed to, or so that it would impress anyone, he did something he would rather not have had to do in order to catch me before I fell.  Without being asked, he just got it.  He just gets me. :-)

© Catastraspie, 2013.

Fractal Flower

Fractal Flower (Photo credit: Jonathan Gill)

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Why I’m too scared to stop my contraceptive…

If the Too Much Information fairy gives you the ‘icks‘, this might not be the post for you.  If you’re interested in mental health, maybe give it a go.

I’m in my mid-thirties and (to my mother’s horror) have not reproduced yet.  Most people who know me will know I have mixed and contradictory feelings about becoming a parent, which may come over as ambivalence, but is actually a result of the tension between the rock and the hard place inside my head.  What few people know is that in addition to the deep moral contemplations about whether I could cope, whether it would be irresponsible to ‘give it a go’ without knowing I could cope, and the, quite frankly, cold sweats over the combination of my pain sensitivity and labour, I am scared of returning to what my life is like without synthetic hormones in it.

I had two very good reasons for getting a coil fitted, even though I had not had a child (they prefer to fit them in women whose cervixes are not clamped shut like the Stargate Iris): 1. Fairly severe hormone-related migraine; 2. Fairly severe hormone-related depression.  I had unknowingly kept both in check for over ten years by being on the pill, but the escalation of my migraines after I stopped taking it prevented my doctor from restarting it, despite my pleas of accepting any extra risk to get my normal life back.  Because for every three weeks of being and living as myself, I had one week of being and living as someone else.  Someone I didn’t like or recognise, who, between fits of crippling migraines, was trying to dismantle my life.  Ending relationships I liked, taking risks, quitting jobs I liked, drinking too much, trying to get back with unsuitable exes…  Like some sort of mid-life crisis crossed with a teenager whose parents are away for the week and left them in charge of the house with a full drinks cabinet and a debit card.  Then after a week, back to reality – the regrets, the cringing, the ‘what was I thinking’, and sometimes the relief that I hadn’t acted on my very-real-in-the-moment feelings.

After trying various unsuccessful solutions, I somewhat hesitantly conceded to trying a coil, because it couldn’t hurt (actually it really did hurt, but that’s not what I mean).  I can only say that it has been the best thing that ever happened to me.  If it hasn’t saved my life, it has certainly turned it around – stable job, stable relationship, stable stableness, with much more manageable mood changes and migraines.  But now, the time has come to take it out.  It’s been running out for nearly a year.  I’ve been struggling more and more with migraine symptoms, and a gradual increase in low mood.  Even if I have another one fitted, this one still has to come out.  To transition me, I’ve been put on the mini-pill, which from memory didn’t do anything magic before, so I don’t know what I was expecting.

Having said that, what I wasn’t expecting was to be plunged straight back down the pit.  In the space of a few days I’ve gone from being on top of everything, to disliking my job and not wanting to leave the house.  I certainly haven’t missed the crawling into bed after work to cry, where nothing interests or excites me, and I don’t want to see or talk to anybody.  I know it probably won’t last, and that I don’t really feel like this, and that things will go back to how they were, but it feels so real, so hopeless, so permanent.  I try to cling on to my cognitive meta-awareness of my previous happiness.  I KNOW I like my job, this is an illusion.  I remind myself that I am lucky, some people feel like this all the time, or at the very least for months on end, and it must be so hard to keep up the hope that things will get better.

But, this brings me back to my fear, and my childlessness.  If you look at the stats, a fertile couple can still take up to a year to get pregnant.  One whole year.  Even assuming (best case) that pregnancy suited me, and I didn’t get post natal depression afterwards, that’s one whole year of epic unpredictability, and let’s face it, how much damage could I do to my life in a year?  Quite a lot.  I’m not sure it’s worth the gamble.

© Catastraspie, 2013.

I've had a migraine/headache for 6 days straig...

(Photo credit: Wikipedia)

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