Why I joined the National Neurodiversity Youth Council
So, if you didn’t read my intro, I’m Beth. My experience with dyspraxia began when I arrived at university. As part of my induction at Uni, I was offered a screening test for dyslexia. To no one (in my lifes) surprise, I had high markers for it on the screening test and was further referred to have an assessment. I was then diagnosed with both dyslexia and dyspraxia in the same assessment. I wasn’t very shocked or upset by this diagnosis. I was always the “blonde” or “clumsy” one of my family.
It was great to finally alleviate that burden of having dyslexia and dyspraxia with no knowledge or diagnosis. I joke, but it honestly lifted a massive pressure off me. For my whole life, I blamed myself for my symptoms, with no knowledge that they were just symptoms. I always felt different to other people, like there was something wrong with me.
Until I was in sixth form, I had never even heard what dyslexia was. I didn’t find out about dyspraxia until I started the process for my dyslexia assessment. This made me angry. I wish I had support for my whole life, especially when I struggled. I struggled through the whole of school to write and do things that weren’t “messy”. I struggled with my coordination so badly. I managed to smash a cooker hob, stand on a laptop, smash countless phones and fall into a dishwasher, which caused my parents a lot of financial strain and guilt for me. I was costing them so much money. There were other things, too, most of which have been blurred out and forgotten as I now know why they happened. So I can stop blaming myself for them.
The anger from my experience encouraged me to apply to join the National Neurodiversity Youth Council (NNDYC). The NNDYC was set up by the ADHD foundation to create a forum for young people aged 16-24 who are neurodivergent. It was designed by young people for young people. Youth voices are brought into the national conversation about neurodiversity. Their voices are amplified on matters that affect them and influence policy and practice.
I applied through a charity and managed to be selected to join. I joined the NNDYC in December of 2022, and we went on our first residential trip in February of 2023. My experience so far has been amazing and different from what I expected. When we went on our first residential trip, I was astonished. I had never been with a group of people who accepted me and made me feel as comfortable as they did. Being in a room with so many incredible and powerful people was amazing. I knew from then we would make a change and make a difference.
Since the beginning of my time as a member of the NNDYC, my fellow members and I have attended several conferences and events. We’ve had many public speaking opportunities. I have been on BBC Radio 1 twice: once to raise awareness of dyspraxia and how it affects my daily life, and secondly to talk about the waitlist for ADHD diagnosis and how that impacts me, as I am on a waitlist currently. Many of the members also go into schools and speak about their experiences. We have also written to our local MPs to add our voices to their conversations about neurodiversity. We are all passionate about raising awareness of neurodiversity and lived experiences.
At times my experience makes me frustrated and angry, “why wasn’t I diagnosed sooner?”, “why did nobody notice?”. I will never know the answer to this, and I can’t change it either. All I can do is use my voice and hopefully make some change, so young people like me don’t have to go through what I did.
Archived: The National Neurodiversity Youth Council – ADHD Foundation