Published on 12, July, 2020
Hi all,
I am a male in my late 30's. As a child I was diagnosed with ADD and medicated on Ritalin. I remember having to see a load of counsellors and I was even banned from eating sugar and E numbers for a whole year. My childhood was awful. I always felt completely misunderstood and could never understand how what I had said created so much drama. I had literally no friends, self-harmed and generally hated myself. My IQ was very high, and my spatial reasoning was graded in some high percentile. But school was out for me. Also, as a result I hardly speak to any of my family.
As an adult I have been extremely high functioning. I get extremely obsessive. I remember completing a masters degree and locked myself in a room for three months. I got a distinction but also developed some agoraphobia. My life is filled with similar stories where I have taken things to the extreme and then had to get counselling to bring myself back to homeostasis. However, I have been told I have Asperger's on many occasions, usually preceded by "I can't believe you just said that you must have ...". my usual response is to look confused having completely missed any social cues.
I saw a presentation a while back about autism having been misdiagnosed as ADHD back in the day. I evaluated every online test I could find and scored 44 out of 50. I then asked my wife, best friend and mum to complete the test on my behalf and scored very high again. My wife said, "I always knew you had autism" and my mum said, "this makes so much sense now".
I could have cried when I did the test...textures, yes toilet paper packaging makes me want to throw up. Numbers, yes I multiply numbers in the weirdest way I have ever heard. Struggle socially, literally this is my life. Anxiety in new situations...do panic attacks count. And so on...
I am finding it hard to comprehend and really don't know where to turn or what to do now. It feels quite overwhelming and emotional to know that something that literally destroyed my childhood and relationship with family was completely mis diagnosed. I've learnt so many coping mechanisms as an adult, I've literally read How to wind friends and influence people dozens of times. Just knowing there's a community out there who feel the same is ... I can't even find the words it's so amazing. Any advice would be greatly appreciated? Am I even allowed to say it's autism without a formal diagnosis? I feel like I am wasting the GPs time as an adult, do I pay private? Is there any benefit to mentioning it to work or will it throw up more issues?
I think you might be from what you've written and there's a lot I recognise.
I think if you've reached this stage, taken tests, thoroughly tested the hypothesis in your own mind and concluded that there may be something in it then you should visit your GP. You really wouldn't be wasting their time.
They will in all likelihood ask you a few questions, and perhaps make your fill out screening forms that they will then forward to your local Adult Assessment Team. I know this because I've recently done the same.
The waiting lists for adult assessments on the NHS are really long. I think the average wait is around 2 years. It can be done a lot quicker if you have the means to go private, but the costs are likely to be considerable.
Self-diagnosis is completely acceptable, and you can use your time on the waiting list for a formal assessment to find out more about autism. Which is what I'm doing.
Good luck with whatever you decide to do.