On childhood diagnosis and what that actually means…

I have been “out” as dyspraxic since I was about 25, and first ever disclosed on an application form to live abroad for three months when I was 21. I didn’t know where at the time, just “somewhere in Asia or Africa” And they are very big places. It was very uncertain but if I was ever going to start trying to be open about my difficulties, there would be a place to start. I landed in India with my giant rucksack several months later. In hindsight I needed to get away, and it was, pivotal to working out who I was or wanted to be. Some peoples idea of a nice get away is a weekend in the lakes, or a trip to Scotland, not gallivanting half way across the world with a gang of people you’d just met. But that’s me, never really doing things by halves.

I have always felt different, that I didn’t quite fit in at school or even university, and eventually recognised I’d always attracted the wrong kinds of people, or even the right kinds who did unhelpful things. I did however, from the age of 7 have a label to explain why I was different. I started to recognise the word “dyspraxia” from that age, but never really understood what it would actually mean for me until I had left university, and was trying to make sense of a pretty rocky 20’s. Hence the Indian adventure.

In India I was surrounded by some very talented poets, everyone seemed to process the thoughts, feelings, sounds, smells of India through poetry. I shared a bunk bed with a girl who wrote beautiful poems, I was even the subject of one of her pieces. She told me one day, I’d taught her how to listen. I was moved to tears when she read it to me. So, in the middle of Rajasthan I began to process my complicated feelings of identity through poetry. I gave up writing the travel blog I set up for while I was out there and focussed entirely on writing poems, that were never shared publicly. I explored feelings of isolation, confusion, and mental health. I wrote about the kids I met in India too, and what they taught me about myself. I wrote about the 47 other people I lived, ate and ranted at after a difficult day. They were the only people who were there, who really understood. Friends at home, although they showed interest, didn’t understand the sheer gravity of India, and the life we had out there. This to me mirrored exactly what it was like growing up with a diagnosis with dyspraxia. I valued the friends I made in the middle of the Thar desert for teaching me that, more than they will ever know.

Friends who were diagnosed later than me describe a “light bulb moment” “A whole life making more sense” “A sense of relief” “Clarity” At 7 I didn’t experience any of these feelings, but I remember very vividly my parents attending meeting after meeting about me, and hospital visit after hospital visit. Seven professionals before any diagnosis wasn’t an easy feat. The overall feeling as a seven year old was “confusion”, a feeling that is echoed across the board I’m sure. Much of my young life was spent trying to work out what was “up” with my brain, and when that became more clear, the need to fight for support took over. Being able to stand up for anything puts you in a more privileged position than most, having parents educated enough to know my rights or to do the research, and middle class enough they knew the right people to help. My best friends dad from nursery was a doctor, a pretty useful best friend to have. Most people don’t have this, and those families who aren’t in the know sadly slip through the net. There’s lots of thoughts on privilege, and certainly being able to access support is up there. Your access to support should not be determined by your privilege, yet we see this with long term mental health care only being open to those who can afford to pay and a diagnosis in adulthood reserved for the privileged few.

“She won’t pass her year 6 sats”, I heard a teacher say one parents evening. I don’t remember much from that meeting, or much more from that school, but I remember those words, “She won’t” Words that as I got older stayed with me. I learned in therapy years later that I have what could be likened to PTSD around my early schooling. So much is blocked out. Flash backs would happen regularly. And the memories I do have would probably stop any conversation dead in it’s tracks, certainly not for office small talk. I changed schools when I was ten. Three years after diagnosis. Three years of confusion. And a CAHMS referral later.

My new school was better. I was happier for a while but I was still, on the whole confused. “Why is that man coming to work with you?” a new friend asked one day. An educational psychologist came to do more tests on an already over tested ten year old. I really was all tested out well before any GCSE exams. “Oh he’s just a SATS man,” I replied nervously. Trying to fit in was tough when an educational psychologist took me out of lessons to carry out a WISC test, and everyone wondered why I was getting special treatment. I learned it’s very hard to explain yourself to others, if the very basics of understanding yourself is beyond you. I grappled with trying to make sense of my identity all the way through secondary school. Who am I? What does this all mean? What do I want? Questions normally followed by silence. I couldn’t find the answers. Support did eventually find it’s way to me at school in the form of extra time in exams and tuition at maths GCSE. There was also much unhelpful support, creating more barriers than anything useful. Acceptance of myself and the journey that led me here all followed as an adult. I had that light bulb, ‘ahh it all makes sense’ in my 20’s too, many years after my diagnosis. I often wondered about the support that should have been offered to my siblings, who were by all definitions, young carers. My parents attention was very much on me when we were growing up. Were they supported to understand me? How did they feel growing up with a sister who wasn’t like everyone else? I have never asked them these questions and likely won’t find the right kind of time to. But I do wonder if more could be done to support the siblings of neurodiverese children. Would that help us reach acceptance earlier? There isn’t really a clear answer.

It took me until the age of 28, on my second masters degree, studying Journalism, and several therapists later, to actually get support in education that worked for me. I stopped trying to piece together why I was different, and began trying to work out who was like me. I started reading like a journalist, looking for the answers and story in everything. Being “out” also came with a heavy responsibility. I have since chatted to several people who are neurodiverse or think they might be, but aren’t public about it. Sometimes they disclose things to me that their partners don’t know, but because I’m open about my diagnosis, they see this as an invitation to use me as a sounding board. I’ve gone away from conversations reminding myself that I can’t be anyone’s therapist, but touched they opened up to me. The responsibility to support others will always be there.

Childhood diagnosis is a complicated one. It gives you the label. The first piece in the jigsaw. But your 1000 piece jigsaw takes so much more than that label. People around you, education, support and your own internal dialogue of understanding, and these have so many different variables. Sometimes I wonder what I’d be like if I wasn’t ‘out’ as dyspraxic? Would I even have the same identity? What would change? The friends I’ve made certainly wouldn’t be part of my life, but I also, wouldn’t feel the same sense of community. Similar to the feeling of community in India. Disclosure is a powerful mechanism when used well, it can offer a means to explain yourself and identify with others. But do we really need to explain ourself all of the time? Growing up with a diagnosis I always thought I had to answer everyone else’s questions. I rarely had those answers. One thing I’m trying to do less of is justifying myself to others.

Dyspraxic or not, we really shouldn’t have to.

 

 

 

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2 Responses to On childhood diagnosis and what that actually means…

  1. Mark Kent says:

    i find it is PEOPLE who make things a million times worsor there views/judgements are very Snotty Nosed ..i have m.e . allergies ,migraines .ibs the list gets lot longer . i take part in a lot lot research
    my blog.http;//mark-kent.webs.com
    twitter,supersnopper

    Like

  2. Siobhan beck says:

    Thank you for sharing your story. I have been very curious to know what my life might have been like if I had been able to get a diagnoses of dyslexia and dyspraxia as a child. I am now 58 and didn’t get a diagnoses until I was 53. I struggled most of my working life and had to stop myself from being resentful that that I had gone through years of struggling, if only I had known sooner, would I have had not struggled with my mental health? You have given me a good answer, yes, I probably wouldn’t have accepted my diagnoses as a child. What I believe would help is that as a child, there was as much emphasis on the social model as there is the medical model. That is, helping those with any learning difficulty to understand themselves. Since my diagnoses and since feeling stronger in myself, I feel passionately about helping raise awareness as well as acceptance as I really would not want anyone else have to go through what I had to. In the short time that I have been diagnosed I have met and spoken to so many wonderful Neurodiverse people who are as passionate as me and feel very grateful for that. Together, our Neurodiverse community can make a difference.

    Like

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