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 would go to your GP and ask for an assessment - but you may have to wait a long time as the waiting list can be as much as 2 years. If you are financially able to it might worth paying privately for an assessment to speed things up. It strikes me (from your description) that you’re likely to be diagnosed as autistic. My youngest was diagnosed when he was 10 and my eldest was recently diagnosed in his mid twenties. I’m part way through the diagnostic process now and have the full assessment this month. Like you I’ve looked back and realised just how much being autistic has impacted on my life. I wonder how different things might have been if I’d had a greater understanding of being autistic much earlier. However we can’t change the past. What we can do is get as much information and understanding as we can now - and use it to live a better, happier life now and in the future. Having a diagnosis doesn’t change things a huge amount in many ways though - there’s very little support for autistic adults. But it at least enables us to gain a greater understanding of why we are the way we are, and maybe find strategies to help ourselves. Good luck - and I’m sorry you went through all of that as a child.
Thank you so much Kate, it feels comforting to know that I am not alone. I have contacted my GP this afternoon but I think the waiting list is huge. Just to understand that I am not as weird as I thought I was is an incredible relief! Thank you for your support and I hope your assessment goes well.