0

So I got diagnosed…

It’s been a while since I blogged, and there’s been a big change since last time. I’ve been formally diagnosed.

At the beginning of the year, I’d got to the point where I wanted to go down the diagnosis path for lots of reasons:

  • so I could be open when something was a struggle. I tend to fudge things and hope nobody notices or gets offended when I mess up. But I often wonder if they’re too polite to say anything. By being public about my autism, it might be more attributable to my wiring rather than not being a nice person. I mean well, whatever it might sometimes seem like.
  • so I could raise awareness by being ‘out’. I found out I was autistic by chance. I wish I’d had more knowledge and awareness of it before, so that I realised what was going on and could make the necessary adaptations with some awareness of the underpinning mechanisms.
  • so I could develop research projects to help the autistic community. I’m in the privileged position of being an academic researcher. Autism research is crying out for researchers on the spectrum to be involved with projects.
  • so I could help colleagues. There have been instances when other university tutors without much knowledge of autism have wondered how best to work with autistic students. Yes, of course you can ask them, but sometimes an issue crops up and it’s not clear how best to deal with it. As an ‘out’ autistic person, I can give an additional angle.
  • so I could connect with people. There is so much going on in research and on social media and I wanted to be part of that. And I wanted to stop being a social recluse.

I’m in the UK, in an area where there is a long waiting list for diagnoses, and where referral can be hard to come by. As I don’t need additional support and seem to be doing OK, there’s little reason for a GP to refer me. Because I wanted to develop research projects in the field, I didn’t want to be waiting two years. There was always the possibility that my suspicions were wrong, and I didn’t feel I could be public without professional verification. Finally, I was concerned that after a long wait, I might end up being seen by a specialist who was used to dealing with children, or who had little experience of how female autism presents.

For all these reasons, I decided to go private. This meant I could self-refer. I did my research and found a well-regarded specialist with expertise in diagnosing adult women. The process involved me and my parents all filling in lengthy forms covering my history and identifying possible indicators of autism using the diagnostic framework. My husband came with me to the appointment and was able to contribute his thoughts on it all too, and some of my behaviour during the appointment was, I’m told, a bit of a giveaway although I wasn’t aware of it. One of the key things identified by my Dad was my tendency to interrupt and leave gaps in conversations, rather than having a fluid, back-and-forth dialogue, and I was apparently doing that in my assessment. I do find it quite difficult to manage conversations and do a lot of processing – how much eye contact should I do? I need to think of questions to ask, help! Am I doing this right? I also have an auditory processing issue where for a few seconds or so I can hear someone talking to me but can’t actually make any meaning from it. I usually ask them to repeat it (sometimes several times) and if I still can’t get it, nod and smile, probably often inappropriately.

There was quite a bit in my history that pointed towards autism – lack of interest in dolls and preferring my railway, not liking cuddles as a child (or hugs even now), communication problems, and various sensory issues among other things. It wasn’t a big surprise to be diagnosed as having Autistic Spectrum Disorder /Asperger’s (I have both on the report, and the specialist discussed the implications of Asperger’s being removed from the DSM and the possibility that other diagnostic tools would follow suit).

Since the diagnosis, I’ve disclosed to my employers, although not to the consultancy (I still get a bit of freelance work through them although I’m working as a university tutor and researcher most of my time). I’ve been offered assessments to see if I need any adaptations. I can’t think of anything practical that could be done here, although I’m wondering if I should take the offer up and find out more about it.

I’ve been getting in touch with other researchers looking to build collaborations and connections, and have had some really positive responses. This is looking very promising! And I disclosed on social media and so far people have been pretty fine about it, and they’ve put me in touch with autistic people they know which is lovely. I’d withdrawn from socialising over the last couple of years because of worrying about messing up and upsetting people, and now that I’ve disclosed, I feel I can reconnect, and make new connections too.

The common response from people I know has been that they wouldn’t have guessed (I suppose 40 years of practising camouflaging accounts for that), and also haven’t I done well considering, and also aren’t I brave. I’m not brave. I’m lucky that I managed to find my niche and that I have a job where I can work mainly from home, and that I am able to do something that utilises my autistic talents. Certainly there are things I struggle with, and most of the time, I have enough control over how I work to be able to manage them. I’m also in the weird position that it could be an advantage professionally to be ‘out’ because of the research opportunities that opens up. Hopefully this can develop into work which benefits us all.

4

The working aspie

typingThere’s a lot in the media at the moment about how low the employment rates are for people on the spectrum. While I know people with ASD personally who are having a real struggle finding work, I wonder how many people with undiagnosed ASD are managing to hold a job down or maybe even thriving?

My Asperger’s/Aspie-like traits have certainly influenced my career. Once I’d learned the rules of interviews – the ‘correct’ answers to all those weird interview questions that you’re not actually supposed to answer honestly – I managed to get jobs quite easily. I certainly didn’t thrive in most of them though, as I hadn’t twigged all those other rules that you have to follow in order to do well on a day-to-day basis.

Self-diagnosis has brought with it a much better idea of what works for me and why, and I try and manage my work in line with that as much as I can, although I still keep my self-diagnosis secret from colleagues. I’m fortunate that in my latest role – postdoctoral researcher – which I’ve been in since February, I can work mainly from home. I go onto campus about once a week. I don’t live nearby, and the commute wouldn’t be practical for anyone on a daily basis, but it’s manageable for a day here and there. I know that on that day, I’m not going to be productive beyond the first few hours. I’m in a shared office, and although my colleagues are lovely, they are pretty distracting. They usually come in a bit later than me (most of us are part-time, so work around other commitments), and there’s quite a bit of chatting. From that point, I do what I can, and figure that the time I spend doing research-related reading on the train makes up for what I don’t do in the office.

I also know that the day after going on campus, I function at about 50% of normal level. A lie-in will improve things, and it’s important that I don’t schedule anything too intellectual for that day. Initially, this job ran alongside another part-time job (a contract that’s now finished – this is the job that I was struggling with in the last couple of blogs I wrote, and I cut it down to part-time hours when I got this job) and sometimes the demands of that job, where I  had to be out client-facing quite regularly, were draining. I find university campuses easier to deal with than business environments. There are lots of people who don’t ‘fit the mould’ in academia, and being a bit odd is less of an issue than elsewhere.

My challenge is how to replace the part-time job that’s finished. I don’t want to replace the research job with a full-time role somewhere else because I really enjoy it and it’s adding some good stuff to my CV. I’m hoping to find some part-time university teaching, and am writing ebooks. I’ve also set myself up to do my old job on a freelance basis if the opportunity arises, although that’s more of a common sense thing than something I particularly want to pursue. There are a few bits of work coming up for that, mostly statistical analysis, at home. Just my sort of thing!

2

On diagnoses

Ever since I realised I probably have Asperger’s, I’ve wondered about getting a proper diagnosis. I now have a long list of pros and cons, but I’m increasingly feeling the need to have one, just for someone to back up my suspicions.

Cons

  • I’d probably have to pay as I can’t see my GP referring me – after all, I’ve managed this long without one
  • Once I have a diagnosis, I can’t put it back in the box. If people ask me in an official capacity, I’ll have to come clean and that’ll probably result in my being judged negatively
  • The actual diagnostics would involve me going over all kinds of evidence, including the numerous excruciating faux pas (is that a plural? My French is a bit crap) that I manage to make and try to push from my mind as much as I can
  • Ideally, they like a parent there too, so I’d probably have embarrassing stuff dragged up that I didn’t even realise I’d done
  • Maybe they’ll decide it’s not an ASD at all, and either diagnose something I haven’t got, or make out that I’ve made it all up or I’m being silly

Pros

  • I’d know for sure: it would be nice to have confirmation of what I think
  • Long term, I’d like to be able to be more open about it with people, but wouldn’t want to do that with a self-diagnosis: I’d want something more official first
  • I’d be able to take part in research on female aspies – there’s a shortage of participants for studies
  • I’d be able to be an advocate and perhaps increase understanding of the condition – on the other hand, while I tick all the boxes for social ineptness, sensory issues, spotting details, needing routine/predictability, having very strong interests etc., I’m unusual in that I’ve managed to live independently for periods of time, and maybe that would mislead people, given that most people with ASD struggle here.

My husband has said he thinks it’s a really bad idea to get diagnosed, because of potentially having to declare it. He’s particularly worried about issues with health insurance (which I don’t have and I don’t need as I’m in the UK), and my driving licence and possibly my car insurance – but you only have to notify the DVLA if a condition worsens or a new condition emerges, and since there’s been no change and I’ve always had it, including when I was learning to drive and taking my test, there isn’t a problem there. I’ve been driving 27 years; car insurers can charge more for a disabled driver if there’s a substantiated increased risk, but nobody seems to have heard of this happening.

My job, meanwhile, is becoming less and less aspie-friendly. The direction the business needs to go (which I’ve identified – I’m doing a marketing plan right now) is for my role to include more face-to-face corporate business stuff and very little research, although research is what I was mainly taken on to do. I’m really not great with corporate environments; all those kinds of jobs I’ve had in the past have involved problems which I now know are ASD-related – getting the wrong end of the stick, not doing appropriate stuff, doing inappropriate stuff, totally misreading things –  so I need to get out! I’m applying for lots of academic jobs right now, which are a much better fit because eccentricity is almost expected, though I’ve not struck lucky yet. Fingers crossed…

 

0

My job

I have a job. A proper, grown-up job. It’s not unlike some of the stuff I’ve done in the past – the stuff I struggled with, eventually coming to the conclusion that the right place for me was academia, where I could have space, and autonomy, and where it’s normal to be a little bit eccentric.

This job is not in academia. A lot of what I do is not dissimilar – training rather than teaching, research for other people rather than pursuing my research interests – but the skills have a lot of crossover. It’s also the first job I’ve done with the (self-)diagnosis. It’s been interesting to experience the same old challenges, but have some understanding of why they’re happening. Interesting. Not much fun though.

I took the job partly because it was based working from home, with a day or so a week out and about. Working from home is great: I like the control, I like being on my own, I like being able to Get Stuff Done. The out and about stuff is harder. It’s not constant, so I can normally hold it together for the half day I need to. Occasionally it’s a full day, and the second half tends to be littered with instances of my verbal processing breaking down. I’d realised I had some verbal processing issues, but I can now see that they’re particularly related to stress and tiredness, I guess from camouflaging.

I have realised that I’m actually very good at camouflaging for short periods. I’m particularly good doing so in job interviews. I guess because I go prepared, because I’ve been briefed what to expect, and I’ve rehearsed the ‘right’ answers to all those silly interview questions, and written summary after summary of how my experience matches these or those criteria, I can often nail it. I can’t keep up that level of performance for more than an hour or so though, and I often feel a desperate need to escape afterwards.

At the moment, more and more client-facing stuff is being handed over to me. I often feel out of my depth. I don’t feel I have the expertise to provide the quality of service that’s expected. My boss is trying to spread himself too thinly, so as much as possible is delegated to me, but I’m not always the right person to deliver: he is. I think ultimately the business model doesn’t quite hang together.

I’m not sure I quite hang together either. When I’m out camouflaging for the day, or half-day, I find I’m very tired for the next day or so. In my spare time, I’m preparing for the next move, but I’m finding it quite tough, as the job is getting increasingly tiring. I look forward to quieter weeks, then find a load of stuff being added to my diary. In the New Year, it’ll be reasonable to move, given my career path (it would actually be damaging to stay too much longer even if it wasn’t so tough, as it’ll stop adding to my CV and begin to hinder my development in the direction I want to take long term).

I’ll do so with a lot more awareness of how I function (or don’t!) in certain situations, and the likely reasons.

0

Christmas: opening up, and escaping

bauble

 

It wasn’t my idea to host Christmas; my husband suggested it. The last time, a few years back, I found pretty tough; the difference is that now, I know what’s underpinning it all, and what I need to try and avoid. I like my family, but having them all there for almost a week is a bit overload. I was pretty glad to have running as an excuse to get out the house: I’ve run regularly for some years now, and often go to my local parkrun. There was one on Christmas Day, as well as the regular Saturday parkrun on the 27th.

There weren’t any major arguments, just little frictions. My husband and I tend to get up pretty early, and go to bed early, which didn’t always sit well with the rest of the family. I’d submitted my PhD thesis a couple of weeks before after burning the candle at both ends to finish it, then had a fairly hectic schedule with some work commitments, as well as having to do all the Christmas shopping and preparations. I’m afraid I was quite snappy with anyone complaining about their accommodation (although I did not, as I’d threatened, send anyone home for complaining). I felt on the verge of meltdown as I tried to go to sleep on Christmas Eve – in tears – but the parkrun seemed to get me back in a better mood, and I managed to keep going for the rest of it, although I probably wasn’t very communicative.

My Dad perused my bookshelves, and wondered why I had so many books on Aspergers, so I told him the reason: because I probably have it. He was disbelieving, and kept talking over me every time I tried to explain, so I sent him off with the AQ test. He got 27, which was pretty much where I thought he’d be. He has some Aspie traits, but I don’t think he’s over the threshold (people don’t, as far as I can tell, think he’s weird). I think that gave him a better idea of the symptoms, so when I told him my score (42 most recently: it’s gone up 1 or 2 points as I’ve realised I do Aspie stuff that I didn’t originally think I did), he seemed to get it.

“Oh,” he said. “Oh. Right.”

He’s confirmed that I definitely stim – the handflapping, I think, which I hadn’t realised, although I know I occasionally rock, and have various fidgetty things I do. I’m not sure if he’s told my Mum.

Although I gather some Aspies struggle to adapt back after the festivities, I don’t. I guess I’m used to the house becoming suddenly quiet when my husband heads back to work (he’s away for several days at a time), and it was a relief to be able to get all the rid of all the Stuff – furniture, bags, noise – that had been a bit much over the previous few days. I was also feeling uncomfortable spending so many days not working, as it was difficult to concentrate with so many people around. Now I’m back to it: job applications, and re-writing chunks of my research so that it can be published in academic journals (fingers crossed).

And my husband, whose idea it all was? I think he struggled more than me. He’s an only child, and not close to his family (he was to his Mum, but she passed away before I met him), so having lots of people around, and people you feel you have to be on your best behaviour around (which I don’t!) was tougher than he expected. Next year, Christmas is at my parents’, and Christmas lunch will be at a local restaurant, which will take some of the pressure off everyone, I think. Hopefully it’ll also include a parkrun.

 

2

Taking things literally

neuron

One of the characteristics of Asperger’s is taking things literally. Generally, I’d say I have a good understanding of odd expressions – things like wearing your heart on your sleeve, or having a frog in your throat – perhaps because even those of us with oddly connected neurons pick these things up eventually.

Where I’m not so great is with one-off contexts. I often get the wrong end of the stick. So when my husband asked if his flask was in the cupboard I was standing by, I opened the cupboard, saw it was, shut the cupboard, and answered his question. How was I supposed to know that ‘Is my flask in the cupboard?’ means ‘Can you get my flask out of the cupboard?’

The end result is that, these days, the misunderstanding gets attributed to Asperger’s rather than my stupidity, although I think it’s a little bit stupid to ask one question when you want the answer to another one.

 

3

Managing

stress gif

It’s been a mixed week. Not long ago, I sent off two applications for jobs for after I finish the PhD. At the time, I figured I’d have it done by the end of September, and while the jobs would involve starting before that, it wouldn’t overrun that much as a result. Would it? And anyway, they were just applications, and the jobs were probably long shots.

Last week I got two invitations to interviews, on consecutive days, with all the preparation that involves – not just for what I say and do during the interview, but what I wear. I’ve not been to an interview for years, and none of my old suits will fasten (writing up involves a lot of cake).

I started some work on the 10-minute presentation for one of the interviews, but found it a huge challenge to sell myself in an area where I don’t have a huge amount of experience, so I thought I’d move onto the wardrobe. As I drove towards the out-of-town shopping precinct where I thought I could find some inexpensive, smart clothes, I was starting to lose it. After an afternoon of rack after rack of stuff that was too summery, too fussy, too expensive or just unsuitable, I had enough for one interview and figured I could cobble together enough stuff for a second (I wouldn’t wear the same top on successive days, but I wouldn’t have the chance to launder anything in between). It wasn’t much of a confidence boost – more a compromise.

I had a meeting with my supervisor about my thesis, and while it’s close to completion, it still needs a lot of work. And at some point over the weekend, I realised I was trying to do too much. In the past, I’d have carried on. I’d have risked a meltdown in an interview that I was underprepared for, and even if I’d performed well enough to get the job, I’d have struggled to settle into it with the thesis still hanging over me. I know this, because it’s exactly what I did with my first PhD, which I wrote up while juggling a succession of jobs; it wasn’t really up to scratch, and I was lucky to get through the viva with major rewrites rather than a fail.

The advantage I have now is that I recognise where things have gone wrong in the past, and I understand why. While some of my academic strengths probably come about through Asperger’s, so do my workplace weaknesses. My first post-doc job needs to be somewhere I can do well so I can build on it in the future. I can do OK in the right environment, with the right level of effort, I think (I’ve got some books to help me out too) – but that’s simply not viable while I’ve got so many balls in the air. 

To be shortlisted for 100% of my (2!) applications shows that I can tick the pre-interview boxes. There will be future opportunities. And trying to work while finishing off a PhD is a challenge for anyone, on the spectrum or not. I’ve withdrawn both applications so I can focus on completing my thesis to a good standard. Both my supervisors were understanding about withdrawing and made encouraging remarks about my success in being shortlisted, and other people I’ve told have thought it’s a sensible decision to pull out (some who know about the Asperger’s, and others who don’t). I know it was a decision that I had to make as I was on track for a disaster at some point. Now I can focus on getting things sorted out at an appropriate rate, and make sure I have time to prepare for interviews AND to get plenty of tips from my ‘Aspie at work’ books beforehand.

Other news: I haven’t mentioned the Aspergers to my family yet. There was too much other stuff going on. But I did realise that my unconventionality really doesn’t stand out; there’s lots of subtle eccentricity in my family, which for the most part (in Aspie-appropriate small doses), I rather like.