Neurodiversity celebration week

It is Neurodiversity celebration week, so I thought I would talk about my experiences as I am still undiagnosed.

Neurodiversity celebration week
Photo by Alexander Grey on Unsplash
Image description: a rainbow heart against a dark background with rainbow plashes of paint and colour around it

Now, I do not want to be someone who looks up symptoms and says I have an illness, I have never been that or done that. However, watching people who are advocates for illnesses you think you might have can help you to know for sure.

For me, it was when I was scrolling TikTok and saw a creator talking about their childhood and how they struggled. I started to think back to my own and it opened my eyes a lot to how difficult I found it to connect with people.

Now, I always had an anxiety disorder I know this because my mom had to get a job at the nursery I went to as I couldn’t cope without her. This continued through school with me feeling sick every morning with anxiety about leaving the house and going to school.

I have had a lot of problems knowing when someone is a friend and not just an acquaintance. I have upset people by treating them as the opposite to what they thought they were, something I constantly worry about with new people.

I can also be very blunt, and honest to a fault whereas when I was younger, I would live in a dream world where reality never felt right to me. I would tell lies to fill in the gaps between the world in my head and the real world. Mindfulness has helped me so much to be in the present and to not get muddled up and end up lying.

The thing is back in the 80s and 90s when I was growing up neurodiversity was not something that was understood or spoken about. Many of us were bullied and teased for the things that could be explained if we had just known what it was and how to cope better.

I am undiagnosed still, and that is not because I do not want to know exactly what is different and if it has a name. It’s because the NHS is so strained, and now focuses more on children than adults…and yet now as adults we are realising, we need to be diagnosed!

I have heard of people waiting years to see someone to be diagnosed and then just as long in order to receive the medication or therapy they need. I would love to share the list of things I have personally noticed that I have saved and have someone tell me what is going on in my noggin!

Am I neaurodivergent?

  • Family always saying I’m strange
  • Act and think much younger than my age
  • Being told by a family friend that me just talking came off as aggressive didn’t understand why
  • Can’t understand money
  • Can’t read a clock
  • Go through phases of really being obsessed with an interest then move on to another
  • Take on personality of TV movie characters after watching it lots
  • Child personality comes out randomly – mom
  • stroking my arms, pressing toes together and in between one another which is comforting
  • EDS support U.K. did a talk about how people with EDS are more likely to be neurodivergent
  • Love to cuddle teddy bears
  • Don’t like to touch certain materials, can’t wear some clothes or use some bedding
  • Hold in when I need the toilet
  • Very structured days and routines if they have to change I panic
  • Rewatch old movies and tv shows because it’s comforting
  • Chew the inside of my mouth and cheek
  • Trouble making decisions and panicking around change
  • Easily become overwhelmed by loud sounds, crowds of people
  • Anxiety and depression
  • Some smells are overwhelming to me
  • Always struggled knowing if people liked me or not and understanding when someone is my friend or just an acquaintance. Often asked my husband even now do they like me are we friends now
  • Always questioned society rules and why they are there what they mean and why they are not logical.
  • As a child I cried a lot from songs to tv shows I would feel things too much and cry even now if someone cries on tv I will cry even if I don’t feel sad
  • Can’t remember much of my childhood
  • When I try to joke with someone they don’t always know I’m joking and think I’m being mean or snapping at them
  • Very black and white about my beliefs
  • Struggle starting new hobbies or interests because of anxiety
  • Always have a song in my head hubby says he doesn’t
  • Get obsessed with certain hobbies or TV shows
  • More comfortable with animals than people

I know most people don’t get me or understand me, I know I am different to most people around me, and I do wish I could find out why. My brain is different, this list was too easy to put together for me not to be and even without a diagnosis, I have always known I am not like those around me.

This is why Neurodiversity celebration week is so important, because whether we have a diagnosis or not, everyone should be accepted. The children who struggled and are now adults deserve answers and support, but our government obviously does not agree.

Mental health affects so many of us and instead of trying to fit into a ‘society’ made box, everyone should be accepted for who they are. Maybe if I had been I wouldn’t have been in so much stress growing up and I would not be struggling as much as I do now.

However, I know better than to expect the world to change overnight, and I will not get answers unless I ask for them. But events like Neurodiversity celebration week give me hope and as more of us speak up change will happen.

Thank you xx

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  • Flowersstorms

    Sweetheart you’re not alone! I’ve also read that those of us with hypermobility syndromes are more like to be neurodivergent, and of course in the 80s/90s ‘only boys were autistic’ :rolling eyes. I’m certain I’m ND although in my case I don’t feel a need to pursue a diagnosis. I hit so many of the points on your checklist, but for me the lightbulb moment was when a therapist got really frustrated with me because I couldn’t identify my emotions! Doing research & asking around led me to believe I have Alexithymia (emotion blindness) which made soooooo much sense. Anyway, m’love, thank you for this post and thank you for sharing your experiences – it really helps to know there are others with similar experiences & thought processes xx

    • admin

      I don’t feel the need for diagnosis, I think those of us who are ND know it and so do the people around us, we find what helps us to fit in and make our lives better.

  • Kaz

    You are not alone. After watching an autistic gardener on Gardener’s World and thinking that sounds like me, I researched and watched YouTube videos by ND advocates (I have found the workbook by YouTuber Yo Samedy Sam very helpful). Unbeknownst to me my best friend watched the same episode and thought exactly the same about me. I self identify as autistic. The NHS waiting lists are too long for my G.A.D. to handle. Also, I don’t want the stress of going through the hours of assessments to be told I’m not autistic or ND because of all the years of masking so I appear to fit in with society. I also have Joint Hypermobility Syndrome, so learning also being ND is common is a relief. I now feel like I fit in somewhere.

    • admin

      It does make a difference when you realise that you are ND because you realise it isn’t your fault you don’t fit into society it’s just the way your brain works.

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