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Why my Autistic diagnosis wasn't what I expected.

In June of this year I took a sojourn in Corfu, 4 weeks off from parenting to rest and recover in my beloved Greece. The previous 12 months had been quite something: long Covid, my mother’s death, school refusal for my youngest and, in May of this year, my official diagnosis as autistic. So much to process while my body was stuck in fatigue and caring for two high needs youngsters.

Strangely the Greece trip was a mixed bag and it took another, worse, attack of Covid during August to really give me the rest and recuperation I needed. Don’t go on holiday to paradise, folks, get really sick from a pandemic and it’ll solve all your problems! I’m kidding... but it is funny the twists and turns that are sometimes necessary to sort us out. (Footnote - my energy isn’t quite back to normal yet but I’m fully on the mend now hooray).

Getting my autistic diagnosis also wasn't quite the experience I expected. I self diagnosed about five years ago and have been identifying fully - if not so publicly - as autistic for at least a couple of years. While I’ve been increasingly sure of my hunch there has also been a great seed of doubt in my mind that I was just making it all up. I knew it was wrong, but the ableist parts of me required something more to lay my doubts to rest. So I coughed up for a private, non-clinical diagnosis at the start of this year. Yep, I needed the weight of professional opinion to take my own self-care needs seriously.

After so many years of feeling different, it can be cathartic to finally have an explanation and an identity, a frame of reference beyond “it's just me” and “I’m just odd”... I see many people on social media triumphantly announcing their official autism or ADHD diagnosis. In that vein I had anticipated holding a “coming out” party post-diagnosis. Dress code: Wear your Weird on your Sleeve.

To be honest though, post-diagnosis I felt both triumphant (I was RIGHT!)... and raw. Every time I felt into going public I just didn’t want to. I told a few close friends, most family, but didn’t make it common knowledge.

The uncomfortable truth behind my reticence is that I was ashamed. I have spent too many years feeling people’s discomfort around my autisticness that I’ve learned to cover it up and keep it under wraps at all costs. In fact, when I think about it, I have been consciously and deliberately trying to pass as a neurotypical person since the age of 11. You can’t just switch that powerful protective reflex off overnight.

At primary school I was deeply marginalised. I didn’t fit in, didn’t have friends and was the butt of a long running and cruel class joke. I was apparently “normal” (my younger sister has learning disabilities as well as being autistic), but also evidently a misfit and without any way of languaging that. At secondary school I really worked hard to cover up or even erase my autistic and ADHD traits, without having words for what I was doing. My diagnosis, rather than instantly releasing me from all these years of striving, opened up a sore old wound and brought it right to the surface. I couldn’t pretend any more. I am the thing I have been avoiding my whole life.

And then of course there’s the grieving. I’ve been slowly working through all the parts of me that were neglected growing up which I then continued to neglect into adulthood. All the big wrong choices I made as an adult because I didn’t learn what the right small choices for me were as a child. All the ways I just felt wrong wrong wrong because no-one told me I was perfectly alright, that I just needed a different approach.

I’m nowhere near done with unpicking all of this, and I’m ok with that, because half the battle is to see the territory before you and have the courage to keep going. I’m delighted to be finally writing a little flavour of this to you now. I’ve wanted to tell you for months; I suspect some of this may resonate with your own experience, whether you’ve been through diagnosis or not - do drop me a line if so.

If you have a track record of success but are struggling to marry your ambitious vision with the day-to-day reality of life as a result of neurodivergence or disability I can help. No more worrying that “you just aren’t good enough” or that there isn't a place in the world for “someone like you”. We can design your working and personal life so you can achieve your goals without burning out or pretending to be someone you are not. Get in touch to find out how I can help.

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