Giving my all when it doesn’t feel like enough

I am always trying my best, and I always try to please everyone, and I always try to be as good and fair as possible.  That’s why I don’t take criticism well, because I am trying my absolute hardest already and someone is saying it’s not good enough.  People are always saying that my standards are too high and that I am too hard on myself.  But people seem to expect so much of me, and are ready to be hard on me if I don’t do what they want, so what am I supposed to do?

I have a new job and a new manager, and at my first appraisal this week she told me that I am always pushing myself to do more and to do better.  I guess I knew that already, but I didn’t realise that it was unusual or notable enough to be mentioned in an appraisal.  I suppose I thought that everybody does the same and it was pretty much part of life.  It’s not perfectionism, as I am more than happy with a job that is ‘good enough’, provided that it is my best effort.  I am aware that my approach to myself can be problematic when I apply it to others.  With high expectations, clear rules about fairness, and constant striving for self-improvement, I imagine that I am easy to disappoint.

From a distance I appear fluid, but up close I am inflexible, in part due to running at full capacity already.  Push me too much and I break; I’m like an iced-up pond.  No I can’t do that small, seemingly innocuous, favour for you that would make your life easier, not because I am unreasonable, don’t care, or don’t want to help (trust me my desire to help rules my life); it is because I can’t do any more than I am doing right now.  I would have to leave something else in order to accommodate you, which would have knock on effects, and the time it would take me to prioritise and evaluate what I could stop with minimal consequences, is itself time I don’t even have.

If you’d asked me a week ago, it might have been ok.  But in this moment I am the person who took an over-stuffed suitcase on holiday, and with only 10 minutes before the flight home, finds that they forgot to leave room for souvenirs, and has to leave behind some other needed thing in order to make room.  What you see as ‘free time’, a luxury or something to be filled with people and activity, is in fact processing and preparation time, a necessity for me to manage my daily living, and something I need to do alone.

The values I look for in a friend include integrity, honesty, predictability, acceptance, and a sense of fairness and justice similar to my own.  The things that hurt me the most are disloyalty, moving goalposts, irrationality, lack of trust, and seemingly unfair criticism of my genuine actions and efforts.  You get the best out of me when you realise (and perhaps acknowledge) that you know that is what you are getting, at all times.  I don’t do halves.

© Catastraspie, 2013.

Shattered ice

Shattered ice (Photo credit: ellensamuelsson)

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Happy Valentine’s Day… if you do that sort of thing!

Valentine’s Day, it’s a bit of a funny one.  You can’t safely wish someone ‘Happy Valentine’s Day’ like you would for their birthday or a national holiday, because for many of my friends it is a negative, irritating or unsettling day.

I find card sending in general quite difficult.  It’s never felt natural, I find it almost impossible to know the right words to put in cards, and I’m bad at judging who to send cards to and when.  On top of that, Valentine’s Day has become so commercialised and compulsory, that it’s almost a bit of a turn-off.

Personally, I’ve not had a proper, anonymous, wondering-who-it’s-from kind of card for nearly 20 years… until yesterday, when I found a gorgeous and mysterious hand-made heart in my in-tray (from a dear friend, which I guessed after looking at her face for only half a second – go me and my non-verbal skills!).

So, surely romance is about being spontaneous, doing something unexpected and at the time that feels right – everything that a planned and fixed celebratory day cannot deliver.  Still, as I sign my actual name at the bottom of my predictable, shop-bought, pre-written card, I find myself wondering why I can’t resist joining in.  Then I write the envelope in funny handwriting and quickly bung it in with the post, just to confuse my partner!

© Catastraspie, 2013.

Valentine's Heart

Handmade Valentine’s Heart

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Changing the world, one person at a time

As an adult on the autism spectrum, and a champion for understanding and acceptance, I try to strike the right balance between providing people with useful information and boring the pants off them.  As neurodiversity (and in particular adults with Asperger’s) is my new ‘special interest’, this can sometimes be a difficult balance to strike.  The strategy I tend to use is to speak for a few minutes and then stop, and wait to see if they continue the topic.  If they do I repeat my action of speaking for a few minutes and then stopping, with the exit from this loop being them changing the subject.  I find this far easier (and less energy-draining) than trying to detect non-verbal signals of interest/boredom, and on the whole it seems to work with all but the most politer-than-polite individuals.

Today I had the opportunity to bend the ear of an educational psychologist whom I met at a work event.  As work-related chit chat had dried up I asked a broad question about how ASC and related conditions are picked up in a school context these days (bearing in mind the diagnosis didn’t really exist when I was at school, and I am now the step-mother to some children very likely on the spectrum themselves).  Detecting some opinions that were potentially in opposition to my own ‘autism is a culture and I’m a very proud member’ viewpoint, I thought I’d better declare myself as less than impartial.

What ensued was a very interesting conversation that I am very glad to have had.  I really enjoy explaining and interpreting the aspie viewpoint and ‘lifestyle’, but what I enjoy even more, is challenging people’s stereotypes of what individuals with autism are like and how they come across.  I’m sure this person won’t mind me saying that they thought I presented as very neurotypical.  It’s not the first time I’ve been told that, and I was very keen to get across the fact that this is due to huge amounts of effort, years of practice, and a keen desire to blend in, rather than a reflection of an inaccurate diagnosis and/or the perceived ‘fashionable-ness’ of autism (apologies for the invented word).  I explained that this presentation comes at the expense of any sort of social life, and is achieved through a combination of paid and unpaid support in work and at home.  I explained that after 30-odd years of disconnection, I had found meaning and belonging with people around the world with whom I might only share this one thing, but that that connection has been invaluable and indescribable.

I guess I wanted to give flesh, life and colour to the concept of an adult with autism, who is now grown up and able to reflect on things like childhood, schooling and diagnosis.  I wanted to embody the mantra: ‘When you’ve met one person with autism, you’ve met one person with autism’.  A professional who interacts only with children and other professionals may not have met a wide enough variety of adults on the spectrum to have a full picture of what and who those children might grow up to become (despite, I suspect, having met a lot of undiagnosed but very aspie parents).  I like it when people are surprised, but only when that surprise is accompanied by a willingness to listen and reconsider.  Happily this was one of those occasions.

© Catastraspie, 2013.

Welcome To Awesomeville

Welcome To Awesomeville. Source: http://www.sawdustcitywholesale.com

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Is sexuality a neurotypical construct?

I’ve never liked the word ‘bisexual’.  Although it’s probably relatively accurate, it’s never felt like the right word, and I’ve certainly not embraced it as an identity.  It comes with politics and stereotypes, assumptions and biphobia.  Just having a love of people in general, and an openness to getting to know someone because of *who* they are, not what toilet they go into, should not be associated with such negative things.  Whilst some might use the word ‘pansexual’ (or ‘multisexual’, or ‘polysexual’ – check out this cool blog if you’d like to know more), few people seem to know what that means, unless they are particularly well-informed, and people who jump to greedy or philanderous assumptions about bisexuals are likely to do the same about pansexuals.

In general I’ve preferred to use the phrase, somewhat tongue in cheek, ‘equal opportunities dater’.  It doesn’t just apply to gender identity and sexuality, I’ve been out with people much younger, and much, much older than myself.  I don’t have a ‘type’, beyond someone who makes me feel good about myself and doesn’t cause me loads of hassle.  Does that make me sound unfussy?  (Or as my friend kindly suggested, I’ll go out with anyone who’ll have me!)  I don’t mean it to, and anybody who knows me will confirm that I can be *extremely* fussy.  Just not about what school someone went to, what shoes they wear, how tall they are, or other surface or biographical characteristics.

Perhaps it comes from a sense that I don’t always make the right first impression, that it takes time to get to know me, and that some people’s perception of me changes dramatically once they do take the time to get to know me.  I like to extend the same courtesy to others.  Just because you are male/female, gay/straight, human/martian, or anywhere along those spectrums, does not mean we are not potentially compatible, something that is based on the *individuals* that we are on the inside.  You don’t hear people saying, “It didn’t work out because s/he’s a wo/man”, so why start out by saying, “It’s not going to work out because s/he’s a wo/man”.

I’ve always been like this.  I spent a while growing up wondering what it all meant, whether I was secretly gay and in denial.  None of the labels or hats seemed to fit, sexuality as it’s portrayed in mainstream popular culture just doesn’t seem to mean the same thing to me.  Later in life, after I found out I had Asperger’s, I started to discover that I was not alone in feeling like this.  Clearly it’s not a topic everybody is comfortable talking openly about, but some of the friends I did speak to at least understood what I meant, even if it was not their own experience.  What struck me was that most of the people who related to it (rather than just understanding or accepting it as a possibility) were also Aspies.  That made me wonder what role society has in shaping sexuality, and to what degree sexuality might be a Neurotypical concept.

I’m not suggesting that everybody is a blank slate (although there are some proponents of this).  Clearly lots of people feel strongly that they have had very clear preferences from an early age.  Also, if sexuality were purely socially-determined, everybody would probably grow up like those around them (and there would be little variation within a culture).  However, in addition to varying along a spectrum between e.g., straight and gay, I wonder if people might also vary along another continuum – that between genetically-determined and socially-determined sexuality.

This is not a self-congratulatory, ‘hey I’m not a superficial person’ post – on the contrary, to make this choice requires a good working knowledge of what others consider desirable, and what constitutes superficial.  If, on the other hand, you happen to fall towards the socially-determined sexuality end, but (due to neurodiversity) have great difficulty in recognising, interpreting and understanding social messages about expectations and desirability, you might end up choosing partners based on a different set of criteria to those played out in everyday society.  If you don’t know what the Jones’ think about shoes, or you don’t care what they think about shoes, you might not mind if your partner wears shoes for comfort rather than fashion.  You might just prefer that they love your cats as much as you do, and bring you a cup of coffee in the morning.

© Catastraspie, 2013.

PS Happy New Year everybody!

Pansexual flag

Pansexual flag (Photo credit: Wikipedia)

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2012 in review

I quite like this aspect of using WordPress, a nice little 2012 activity summary:

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 9,600 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 16 years to get that many views.

Click here to see the complete report.

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Straw poll about co-existing conditions with ASC

I’m really interested in conditions that co-occur, overlap and are misdiagnosed in people who have an autism spectrum condition.  This includes diagnoses you may have been given that have since been superceded by the diagnosis of an ASC, and diagnoses you have been given but disagree with.  The poll is unofficial and informal, but might feed into my thinking in the future.  If you are happy to join in, please do, but there’s absolutely no obligation (it’s anonymous!).  Please excuse the overtly medicalised approach, which is partly due to the fact that my brain can’t help categorising, but also because diagnoses are so often the key (or barrier) to particular support services or experiences (and stigma), and play a part in an individual’s narrative.

Apologies if you have other diagnoses that are not listed, these are based on anecdotal reports and my reading so far. If I’ve missed something obvious, please use the ‘other’ box.

In due course I will write another post summarising the results (including the ‘other’ responses), but I have to say, it’s looking really interesting already!  Thanks to everyone who’s filled it in 🙂

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So I have ongoing counselling, so what?

When I went back to see my counsellor (therapist) after a nine month break, she gave me some assessment forms to fill in, including one which asked what issues I wanted counselling for, and what I wanted to achieve.  I had difficulty with this form because I wanted to write, ‘I don’t know yet’ and ‘to deal with things better than I would if I weren’t seeing you’.  In the past I’ve always had counselling around a specific issue, one which has got me to a point where I’m about to stop functioning altogether.  This time is different, I want to stay well and deal with things as they come up, rather than waiting until they get on top of me.  Hence I didn’t know what the issues would be, as they often change week to week.

As I was filling out another form, which asked me questions about how I had been feeling in the last week, I found myself worrying that my (distress) score was not going to be high enough and she might say she couldn’t help me.  Then I started wondering where that came from.  I worked for several years for the NHS (UK healthcare system… for now) in a community mental health team, so I’m very aware of these forms, how they are scored and what they mean.  There’s a ‘clinical cutoff’, and you have to score above that in order to access help, and successful treatment is measured by a drop in these scores to below the cutoff.  Whilst this is clearly, in part, a way for resource-stretched clinicians to prioritise ‘service users’, and ensure that the service’s limited time and money is allocated to those most in need, I can’t help feeling that it has become absorbed into the (publicly funded at least) mental health professional mindset.  It has morphed from what is essentially a matter of finance and efficiency, to being considered the reality of a person’s situation.  The only legitimate mental health problems are those that can be treated quickly and effectively, and anything beyond this is untreatable (rather than uneconomical to treat, which is clearly very different).

I remember one colleague telling me that it was important not to pathologise the normal unhappiness that is part of everybody’s lives – if something bad happens, then it is normal to feel sad about it, and that therapy is not indicated unless that happiness lasts longer than it is supposed to.  The government’s focus on an extremely short-term, one-size fits all, CBT program called IAPT (Improved Access to Psychological Therapies) locates responsibility for therapeutic success or failure jointly on the patient and the practitioner, rather than on any short-comings of the program itself.  The unrelenting quotas can mean that people are cherry picked from the waiting list if their problems look like they will respond sufficiently on paper to the two telephone calls or the eight face-to-face sessions that will be offered.  Individuals with complex presentations may go through a more traditional route and end up receiving up to 6 months’ counselling or individualised treatment, but only if they haven’t had too much before.  Accessing lots and lots of therapy is seen as being unable to use it properly, not being able to learn from it and apply it in new situations, and this can count against you.

I am one of those people.  Not because I have complex problems, or because I’ve had horrible things happen to me (no more than average anyway), and definitely not because I am unable to use it or learn from it.  It is precisely the fact that I find it so incredibly beneficial that I ask for more.  Sure, I’ve had some courses of therapy that have been of little or no help, but on reflection that has been because the counsellor was trying to work with my impoverished and difficult to articulate emotional self, rather than engaging with my surprisingly self-aware verbal self.  I have been criticised in the past for ‘pushing down’ my feelings, and rationalising or ‘over-thinking’ everything, with no recognition of the fact that words are the only thing I know, the only way I can work (due to Alexithymia).

Now that I have found the right counsellor, I come away from every session with so much more understanding of myself and my life, and a clearer idea of what I need to do next.  Even though I do find it difficult to transfer learning to new situations, I don’t feel like I am rehashing the same problems over and over.  I am very confident in applying coping strategies to recurrences of the same problem.  But sometimes I need help to reapply skills I already have to the new situation, because it is similar but I am unable to see that.  Therefore part of what she does is to help me work out whether this is like a previous problem, or if it is different and I need to develop a new approach.  Another thing she does, which I am unable to do on my own, is help me identify my feelings, sometimes by telling me what expression I have on my face so that I can test out whether that feels congruent.  She may also ask me questions, the answers to which make me cry, acting as a signal that this is something which is upsetting me currently.  She acts as a translator, explaining situations that I don’t understand, suggesting possible motivations, and pointing out where I might have misinterpreted something or been misinterpreted myself.  Most importantly, she validates, rather than challenges, my experiences – something I don’t get from anyone else, even my nearest and dearest.

Asperger’s is a life-long condition, and difficulties like not knowing how I feel, and not transferring my learning, are not going to go away.  It is estimated that a majority of people with Asperger’s also have mental health difficulties such as anxiety and depression, which may manifest differently, be harder to spot and treat, and be longer lasting (see this interesting article by the NAS).  Given the daily struggles with independent living, communication, social interaction and myriad other things that others do with ease and take for granted, is it any wonder that our mental health suffers?  These difficulties don’t go away, so why would our mental health issues be expected to improve after a superficial, short intervention focussed on one situation or one issue?

With the help of the right person I am able to build a tool-kit of strategies to use to try and compensate for the things I can’t do.  For example, asking others to identify my emotions for me, or making a checklist of previous problems and solutions, and seeing if any match my current situation.  This is not something that can be achieved in eight sessions of CBT, or even in six months’, but needs to be done over the course of my life as the new situations arise, and as and when I am able to fund it.  Being able to do this in a safe, non-judgemental space, where I can focus on myself for once, rather than endlessly acting out social scripts, translating social cues and worrying about getting it wrong, is invaluable.  I’m not a failure at therapy, I just have such a chasm of skill and understanding (often hidden by my ability with words), that a tiny CBT sticking plaster won’t even touch the sides.

© Catastraspie, 2012.

Fig. 185 Motorists tool kit roll of 1912 Scans...

Fig. 185 Motorists tool kit roll of 1912 Scans from ‘The Book of the Motor Car’, Rankin Kennedy C.E., 1912 See other images from this source in Scans from ‘The Book of the Motor Car’ (Photo credit: Wikipedia)

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