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.

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