Diagnosis day

I deliberated a lot before getting assessed for autism.

Like several years a lot.

I even wondered what it would mean to me if I WASN’T autistic. Given I have spent a lot of time and energy over the years advocating for neurodiversity and self-identifying as “probably” on the spectrum.

I chose not to go the route of a NHS assessment. My experiences with the NHS in the diagnosis of my son were not good at all – cancellation after cancellation and lots of focus on “financial implications”. I also knew that women can be particularly troublesome to diagnose because they can be expert maskers – masters, or rather mistresses, of coping mechanisms, script-learning, social mirroring etc. In addition I didn’t want to start claiming any kind of financial support, so I was free to choose exactly who I spoke to.

Eventually, after reading her books and articles, I contacted Tania Marshall, who specializes in adult women on the spectrum. She asked me to gather a whole host of information (strengths and challenges descriptions of me by family members, photos of me from birth to 25, school reports, school work, IQ, auto-biography etc.) and we arranged two marathon Skype sessions, punctuated with a full day gathering additional information for her and doing a whole range of different tests.

So here’s a summary of what we found and although I have put these in bullet points, they are all pretty inter-twined:

  1. I am indeed autistic. I fit the profile for 2E – I’m too embarrassed to say what that stands for, but feel free to go and look it up. I have written and spoken a fair bit about my autist traits so won’t go into all the details here. I feel sure I will write a future blog post and talk about my personal autism challenges and also the particular strengths that autism has given me with regards to my life and career in tech.
  2. I have two types of Synaesthesia (concept -> spatial and visual -> sound). That is I visualise concepts and sequences in 3D, and visual cues for me have corresponding sounds (which makes some sense of the fact that I often manipulate “ideas” spatially – Anyone who has seen me talk will notice me doing this – moving around the space, gesticulating a lot – recently someone asked me if I was a dancer after seeing me speak!).
  3. I have Interoceptive issues. That is, I can’t hear messages from my body as well as other people. This made me laugh as it came literally a week after I pushed myself so hard working out that my muscles broke down and released their poisonous toxins into my blood. Luckily I was super hydrated so avoided kidney failure. It also explains how I had two of my three sons with essentially no pain relief.
  4. I am Alexithymic – I have trouble recognising the emotions of both myself and others unless they are obvious and extreme. In particular I really can’t tell emotions from people eyes to an extent that completely shocked me when I was tested for it. The helpful part of that is that in an emergency I’m very, very level headed and logical, just that later on I pretty much collapse with exhaustion.
  5. I have high Emotional empathy – I feel things very deeply, I’m impacted hugely by newspaper headlines, photos, stories etc. and find their effects on me hard to shake off – to such an extent that I mostly avoid the media. However I have low Cognitive empathy – I’m quite rubbish at knowing what to say to empathise, although I know to offer a hug, rather I have the urge to offer lots of suggestions of how to “fix” the problem.
  6. We spoke a little about Gender fluidity, particularly as I was always a “tomboy”, I kept my hair very short and wore boys uniform to school for several years and similarly often wore a suit and tie when I worked in an office. This never seemed at all strange to me until I thought about how obvious it would have been in an inversely gendered situation. I have never really considered someone’s gender to be a particularly important part of who they are or how I interact with them. I am exactly the same about age or hierarchy (which hasn’t always served me well in the workplace, it’s true). Not that it’s anyone’s business but in case it’s important to you and you are confused – I still consider myself predominantly straight, identify as female and my pronouns remain She, Her and Hers. And I’m happily married and the mother of three awesome boys.
  7. Like my son I seem to have a little twist of ADHD in there too.

…..I’m sure there are other parts I have missed out.

So, what does all this mean? Well, ultimately I’m still me and because I was aware of some of this already, over the last year or two I have already been more able to better support myself, for example:

  • By allowing myself to not attend social events or to stay for only a short time or have a structured activity to help.
  • To have a name for and understanding of that feeling of sensory overload, being able to recognize it quickly and have exit strategies.

The assessment has helped me realize that I need to force myself to rest more and include calming activities in my life regularly. I have started drawing again as this is a good outlet for my visual brain. I’m keen to start coding again too – to see what difference (if any) it makes now that I know that I am very visio-spatial, and because the logic part of my brain feels kind of under-nourished.

Unexpectedly it makes me and my family smile when I do some little things I have always done, like:

… explain a thing in a theatrical way

… complain that I can hear tinsel sort of screaming

… voluntarily go and do the washing up when I can’t socialize any more

… insist on watching a whole series in order before I can watch a different TV show

… stress out in amusement arcades or shopping malls

… touch things like wall textures and remark upon how lovely they feel/smell/look.

… get “hypnotized” by things like lava lamps and (ironically) fidget spinners – which I don’t enjoy spinning, but I absolutely adore how the still middle bit looks when the stuff around it is spinning.

I’ve also been truly shocked when I have told someone I have never spoken to about autism before and they just say something like “shall I pretend to be surprised?”

Knowing I am autistic has:

  • Given me knowledge and vocabulary.
  • Helped me recognize my (approximately quarterly) cycle of non-stop activity followed by illness and burn-out.
  • Provided me with some ideas for how to look after myself better.
  • Empowered me to ask for the things I need.
  • Given me an understanding of things I struggle with, including social and inter-personal issues that have always puzzled me.
  • Offered me some ideas for how to begin to better understand others.

Most excitingly of all it has offered me some new and unusual skills to explore that I didn’t even know I had.

I can’t believe I put it off for so long!

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3 Comments

  1. Its so wonderful to read and see how its enabled you to feel connected with yourself and how wonderful you are. Diagnosis has been empowering for you.
    ❤❤❤❤❤keep rocking it as i love to read your stories xxx

  2. I’ve mixed feelings on reading this. On the one hand, it’s a great account of the value of assessment. On the other, the description you give of the results support neurodiversity (and its value), but many of the issues you describe do not necessarily relate to autism. For example, difficulty in recognition of facially expressed emotions also occurs in developmental prosopagnosia (where there are a variety of impairments of face recognition) which could also cause difficulty in crowded social situations; sensory integration and awareness problems are widely distributed in the population (eg misophonia) and if you have listened to a lot of very loud music (or not) “tinsel” screaming can be a form of tinnitus. Similarly, being drawn into patterns or motions are traits associated with autism, but are not sufficient on their own to make a diagnosis. You do say you had a very extensive assessment with lots of tests, so I am in no position to question the diagnosis (as I have done none). However, while some folk with ASD are 2e, not all 2e folk will have ASD. All this is important because it’s a mistake, which can be harmful, to assume that having one or two traits of a syndrome means you have the syndrome. It’s great to see you blogging about the value of a diagnostic assessment, but it’s also important that people who think they share some of your neurodiverse experiences seek their own assessments, rather than assuming they must be autistic because they are like you in some way.

    1. Hi David, thanks for the comment and I absolutely agree on both counts. First, that what I have written about here are only some of the things discussed and the tests which I did during the assessment. To describe everything would have made for a very long/unreadable post indeed. In fact, if you read the post back again, you will notice that I even mention I have not spoken about the fundamental autistic traits here, rather the additional interesting things I have found out. So whilst I agree that the issues I described here could be attributed to other things they are just a few additional things added to a wide range of evidence, including of course not just “current” me but also my childhood and family history etc, which as a whole puts together a pretty compelling picture.

      Second, I absolutely agree that others should definitely not consider “being like me in some way” as meaning that they are or might be autistic. I am in no position to offer any form of advise or diagnosis, beyond stating that (for example) it seems that evidence suggests if you are in tech you are more likely to be.
      Thanks again for your comment.
      Sal

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