What it’s like growing up with undiagnosed Aspergers

This is a guest post written by a good friend of mine from my university years who was not diagnosed with Aspergers until her late teens. She volunteered to write this post for me as several people had asked me to write a post about late diagnosis but I did not feel I could do the issue justice as I was diagnosed at the age of eight and therefore didn’t live through those years of uncertainty. Below is my friend’s experience exactly as she wrote it. I found reading it extremely poignant and touching and I hope that reading it can help people who grew up without a diagnosis realise that they are not alone. It also helps me appreciate just how lucky I was to be diagnosed and therefore given access to support at such a young age.

“I was born in the year that Lorna bird rediscovered Hans aspergers original German text and translated it. However this was only available to a select few in the medical community and was not to see the Light of day for quite some time. This would cause quite a few problems in my life as nobody had a clue what if anything was wrong with me. My mother insisted to various medical professionals that something was awry so I would go for tests some times lasting a day but to no avail. It probably drove my dad up the wall. I remember one batch at 11 where they analysed my urine etc to check for foreign components. Lots of talking and checking to see what I could and couldn’t do. Ironically it was only found out that I had inverted hips and knees at 17 after my accident and diagnosis. The result was always the same whether in the north, south or Midlands. She is a bit eccentric but other than that she is fine. So I struggled on, being bullied, never having friends or really understanding the world around me but insulated by my own mind. I was very good at school extremely dedicated to learning with an insatiable thirst that I still have. I pity anyone who takes me to a museum and isn’t prepared to wait while I read everything in sight. I’m very thankful to my dad who helped me understand maths at 6 but I lost my magimathematical ability after that fateful near fatal car accident at 17 on the morning of doing my SAT exam. I was so full of hope and promise entering into my final year at school, understanding myself but it was all taken away by a tourist who couldn’t drive properly. I was lucky to be treated by a Bosnian doctor who had worked in war so knew what to do when. If it was not for him I might not have been around now to write this. My English ability improved to compensate but I will only just be average at maths now. Its lucky that I can even do maths as I struggled to add 1+1 directly afterwards. I had to relearn everything with my mother’s help even down to walking and when to go to the toilet. It was an intense 9 month recovery involving physiotherapy, occupational therapy and seeing a psychologist every week. My social skills are improving but I will forever say embarrassing, inappropriate things. I can’t help it situations are too diverse for there to be rules for everything. It’s taken a long time to cope with the fall out and in some ways I will never fully deal with it. The world that means even if you have tried every single arts and craft, have a basic cooking ability, are computer literate, well qualified and can entertain yourself when needed but cannot become employed despite govt help is a cruel place. Autism is a curse and a blessing it just varies with the situation. So far it hasn’t helped but hopefully in the future it will. I can only hope because without it leads to despair and depression with the world that does not want me in it.”

I would like to thank my friend for having the courage to write this as I know it can’t have been easy for her. I hope all of my readers join me in wishing her the very best of luck for her future-I cannot think of anyone who deserves it more.


One Response to What it’s like growing up with undiagnosed Aspergers

  1. alcockell says:

    I know this so well – I was one of the first people Michael Rutter diagnosed in the UK – Lorna Wing translated Hans’s paperwork in 1985, I was dx’d in ’87.

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