I have a little (autistic) list...

One day this year, in my sixties, I woke up to find I was autistic. Lifelong, obviously. Confirmed by a consultant, I am now officially autistic, I have a label, a sticky label admittedly but it is a label and it lists my ingredients and the allergens and probably a few e numbers. The diagnosis was made and there was the sound of things falling into place.

I have worked professionally with autistic people – among others – for a long time and have family members who are autistic and yet it had never crossed my mind that I could be autistic Too busy masking, I guess… Too busy expending energy on trying to be normal and fit in, raising children, working, being a wife/mother/daughter/multitasker, and despite failing, always continuing to get back up and try again. Never in a planned way, never thought through, just striving all the time to keep up and function. I never quite made it to non-weirdness but the little wins were enough to keep me striving and noticing that it must be my fault because everyone else was doing fine. In reality I must have looked as if I was “doing fine”, doing lots of interesting jobs, launching a business, raising my four children with my husband. In reality I was exhausting myself until I could no longer do it.

One of the insights for me as a result of my assessment and diagnosis was that the people I worked with had an autism that was very clear, very present, it impacted every part of their lives in an obvious way. Mine is subtle – to others – and therefore, had I thought about it (I didn’t) I would have instantly dismissed the idea of me being autistic. My challenges were my fault, I was wrong, dysfunctional, stupid, weird, simply not right, programmed to get it wrong. I said my autism was subtle but it was subtle only to other people – now that I have permission to recognise it, to reflect on it I can see it was unsubtle to me. It caused great sadnesses, big relationship gaps and problems, denied me (and others) some satisfactions and experiences that I might otherwise have enjoyed or learned from.  All these years I have been disabled without knowing it, living through all the negative experiences of disability without being able to mitigate them or manage them. The disability was invisible even to me.

Since the diagnosis, since gradually accepting it and tracing back through my history to those many places where autism has influenced the course of my life and my health and where it has challenged relationships – my impact on others – I have become emotionally stateless. Now that I can begin to accept that there are hidden things, many things, that I don’t understand I am left still not understanding them and moreover treading carefully through the maze towards some of the answers, necessarily on my own with this. That is how this works.  I do not know what to do with this onslaught of insights, with this permission to be different.  

From initially thinking it wasn’t a thing, just a diagnostic confirmation of difference, to realising it has the most profound implications has been a tough road to slog along. Initially all my efforts went into self-protection, a blasé “I’m ok, it’s just words” that allowed me a temporary pause in my usual go-to response of over thinking, but that was doomed from the get-go. Suddenly that dried up and the realisation that things could have been different, and still can be but it will take some work, reared up and found the pain-point.

I think I will return to this in future blogs and essays, if only for my own satisfaction but also, I think, for others who are coming late to their diagnosis, to say actually it’s ok, it’s great to find this out, essential in fact, but you do have a bit of a journey ahead to use this information. And perhaps I can help. For now, I am off to explore the out of control thinking bouncing around my head and do some more focusing on my history to examine the autistic pain points and learn from them. The clues were all there – what is more astonishing than the diagnosis is that it was so late coming. The hours I spent when young with my increasingly tatty copy of the score of Berlioz Fantastique visiting every possible gig, following each line and note. My synaesthesia. Obsessively out riding horses and collecting models of horses which all had to be lined up correctly. Playing piano obsessively for hours each day. I have a list… 60+ years of a list.

Having a diagnosis of autism as late in life as this means a reassessment of identity and a potential path to forgiveness for all those potential lifelong failures and misunderstandings. It caused me in a very real and visceral way to ask myself “who am I?” For all my life I have struggled with and also often enjoyed the duality of Irish Englishness. It irritates me that with all the multitude of options on the DEI forms we complete there is nowhere that offers the Anglo-Irish identity – despite it being not uncommon. We could celebrate it alongside the many permutations on that list. Incidentally, I don’t “identify” as Anglo-Irish, I am Anglo-Irish. I don’t “identify” as autistic, I am autistic. That reality matters.

So, if anyone reading this has a late diagnosis and is exploring/struggling/reflecting on what it means, perhaps I can be useful – I am only partway through that process and I rather suspect it will never be finished, but I have the shared experience and that might be helpful