A see saw day and “Diagnosis as a adult” by @soundcube #ThisIsAutism

By | April 19, 2014

It’s been a day of ups and downs for D, a see-saw day.

One moment, she’s absolutely fine, happily crafting (she has very good fine motor skills and will spend ages twirling and twisting materials) and the next, she’s very withdrawn and in tears. Unable to say what’s wrong for a good few moments, amidst sobs and withdrawal.

When she has been crafting, she’s been making jewellery with ribbons and little crafting gemstones.

Then the “switch” flicks and her mood suddenly and dramatically changes. It’s difficult to anticipate and to manage, but at least we’ve been at home. I wonder if it’s in part a response to noisy and busy situations yesterday.

This Is Autism

Tonight’s guest post comes from Jon, who’s on twitter as @soundcube. He has written about his journey to a diagnosis in adulthood, which I found very interesting to read.

We went through a diagnosis for D at aged 4 and for T at the age of 10, both used different means and tools and I wanted to feature autism diagnosis stories from later on in life too.

Diagnosis as an adult

“It feels like a lifetime ago but it’s only a year ago since my diagnosis of Aspergers syndrome was ‘Konfirmed’. I had an opportunity and I took it with both hands and an open heart. I sat in the hotel the night before unsleeping laying out everything that had lead to this point in a vast timeline, to me this was the ultimate test I would ever face. When I eventually fell asleep dreams were hard and I woke early.

I had always known I was different to most people about me, a lesson sometimes painfully obvious especially during my early years at school. Maybe as early as 4 or 5 at infant’s school I learnt my differences were ‘real’ and expectations at odds with the majority of children I had contact with. I felt I lived in my own world and often retreated to it when things were awkward or unfathomable (I still do) It was the first opportunity I had to mix with other children and by 7 or 8 I realized two things – I could never be ‘like them’ and that I needed to ‘look the same’ on the surface or life became ‘hard’. I thought this may be easy as even then I judged most to be very shallow. I know now this was my inability to see below the surface, beneath the skin or the way they acted or read between the lines of the words they spoke. Its different looking back after 45 years and tracking the way you ‘formed’ and learnt to ‘exist’ in a neurotypical dominated and prescribed social world.

I had other issues at school; I am very dyslexic so this was an easy ‘doorway in’ for teachers and kids to bully me about my writing and spelling as well as weirdness. I went to school in prehistoric times, Still I had gifts, the genetic legacy I inherited wasn’t just one sided. I could remember ‘stuff’ very easily especially if it was presented visually, maybe not often ‘stuff’ that mattered but it came in useful (mostly) but then I could also ‘draw’ – I had dreamt of being an artist since I was 6. I know now I systemised everything then, it’s why I was good at understanding ‘natural systems’ and ‘rubbish’ with understanding people who just seemed plainly unpredictable. The artist was bullied out of me at 11 when a picture I had drawn was torn up in front of the class as I had spelt my name wrong. I eventually mastered some ‘rules’ and survived school and university becoming for my own ‘self preservation’ reclusive and distant but always with the hunger pangs of desire to ‘join in’ being a million light-years away from on the spot reality. I entered into the ‘world of work’ as an home taught illustrator of very complicated books and there I sat as the world turned around me – 3 children and a failed marriage later it was suggested…..are you Aspergers?

I had found out that I was dyslexic at 39 after a ‘suggested whisper’ and having an ‘official test’. I then started after getting my confidence together talking with people and working tutoring other dyslexic Young People as well as making a ‘world of new things’. On one course I ran, one of the social workers handed me a copy of ‘Curious tale’ and said had I ever considered I was autistic. No I had not but reading it made sense. At the same time I discovered that I was a synaesthete, I thought everyone experienced the world as I did but no. I touch time and sound, personify numbers and electrical items and stones are definitely alive. I had always had trouble with ‘colours’ too – yellow disgusts me tasting of mould – this was always troubling and distracting for me as an artist and I often worked in drawing Black & While or photography.

So here I was in Cambridge sitting on the edge of a seemingly foreign bed. The walk in to the Autism Research Centre would take 19 minutes. I knew this as I had been visiting for the previous 18 months working as their Wellcome ‘Artist in residence’ and had got to know some of the staff very well. I was familiar so I was not as anxious as I expect some people would have been. My Aspergers had been recognised and I was in the midst of a project exploring the ‘Autistic way of thinking’ in sound and image. I had met Professor Simon Baron Cohen when I spoke at the same event for a leading Art Science organization at Cheltenham Science Festival in 2011 and he wanted, like me to know more. http://www.artscatalyst.org/projects/detail/jon_adams_konfirm/

The walk in was relatively quiet, I stopped to take a few photographs on the way but was early as usual, made welcome and waited anxiously. Earlier that year there had been an article in ‘The Times’ which Simon and I had contributed to, explained about ‘why a diagnosis’ is often needed where there are ‘issues’. I had said I needed to know not for me but so I could receive the support I needed whilst in work to give my best, something very important to me and necessary. I had been referred for a diagnosis by my GP after careful though and consideration as I had been having issues with my mental health due to ‘trying to fit in’ and becoming worn out.

Then I was asked in, the diagnosis was ‘a detailed yet set conversation’ with someone I hadn’t met before , who didn’t know me which was fine as I knew that was the ‘rules’ as it were. It was a long conversation, a conversation where I found out revelations during the day we spent together. Questions – questions – an entire life history unfolded before me, was of thinking, doing things, it was ‘uber’ comprehensive and complex, digging deep, but I was 100% open and honest as those were the ‘rules’. When we finished I was exhausted but I knew more about myself than I could ever have hoped for. I knew I had made the right choice, finally after 6 years of suspecting and a lifetime of somehow ‘knowing’.

For me it didn’t mean another label, far from it it meant I could strip many away that I had been given against my will over the years – Labels that weighed and sighed and sat on my back. For me it was my ‘Golden ticket’ to be who I should be – no excuses – just a plain liberation when I saw in ink written on paper – Diagnosis (not that I like the word!) is ‘Aspergers syndrome’ – in fact very Aspergers – with the ‘numbers’ to prove it.

Since then what has changed? It still feels somewhat hard ‘existing’ and I still feel that there is nothing ‘wrong’ with me. I don’t feel contained by the words autistic or Aspergers but I do feel contained by others opinions – often said out of ignorance – Something we all may fight against every day, that can make our days long and exhausting. Now I can access support officially, obtain adjustments for others to fit in with me, something I’m not ashamed to say I need. I can also take part in ‘research’ which may help with understanding and knowledge to improve our ‘life experience’ not just weed us out or expect us to change.

Now I don’t feel I have to expend quite as much energy or anxiety investing in ‘polished social camouflage’ to pass ‘unnoticed’ in a world of often ‘expected neurotypicalness’. Now It may not solve everything but it gives me strength to be a ‘Konfirmed’ resident.”


Facebook Comments


rebecca beesley on 1st May 2014 at 1:49 pm.

I LOVE this paragraph in the guest post – so important to remember and such a great way to see things: “For me it didn’t mean another label, far from it it meant I could strip many away that I had been given against my will over the years – Labels that weighed and sighed and sat on my back. For me it was my ‘Golden ticket’ to be who I should be – no excuses – just a plain liberation when I saw in ink written on paper – Diagnosis (not that I like the word!) is ‘Aspergers syndrome’ – in fact very Aspergers – with the ‘numbers’ to prove it.”


Jeannette on 11th May 2014 at 3:19 pm.

Agreed, we encourage T and D to look beyond their label and what they can do, as opposed to can’t 🙂


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