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?
ADHD and autism can co-occur, it is not that uncommon. The penny dropped with me very early last year, when I was 59, I then did every test available and researched autism obsessively. Having become convinced that I was autistic, I wanted certainty and validation, so I paid for a private assessment, which confirmed my view with a diagnosis. I could not have rested with just self-identification, even the three weeks I had to wait for my assessment seemed far too long. This is purely personal, other people find self-identification completely satisfactory.
I have a visceral revulsion on touching nylon fabric, I'm a quivering wreck for minutes afterwards.
I would say that a lifetime of suffering and not knowing why is reason enough for seeking any degree of medical help.
I took early retirement a few months before my diagnosis, I worked at a university, had I continued to work I would have informed my employer and sought agreed accommodations to make my work life easier.
Thank you Martin. I feel similar regrading testing and it's probably more of a when and not if. May I ask who you used for you testing and if you have any feedback?
I think I will raise it with my employer. Even simple changes to my diary seem to cause me an excessive level of distress. The train strikes are playing havoc with my schedule and it's amazing the impact this seems to have on my general levels of anxiety.
Happy to have been of some use. I used Psychiatry UK. I had a written diagnosis, which I asked to be sent to my GP for my general medical record. I was also diagnosed with generalised anxiety disorder at the same time.