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?
Yes, absolutely you are 'allowed' to just self-identify. We'll more than respect that. Not everyone wants to go through the stress and strain of an assessment or to be labelled. Most of us aren't clinical psychologists with any right to diagnose anything, but you are sounding pretty autistic to me. I assume your online test was the AQ50. Whilst not a diagnosis it is a good preliminary indicator and 44 is pretty darn high. And as my autism informed counsellor said to me before my assessment, generally people's own intuitions as to whether they are or aren't turn out to be correct.
If you do go down that diagnostic route, it sounds to me like you need to ask for a dual assessment (ADHD/ Autism, which are related neurodiversities of course) so they properly rule in or out both and thereby correct any previous misdiagnosis. With respect to your GP, the reception you get depends on how enlightened about neurodiversity they are at times, but you certainly aren't wasting their time. You have as much right as anyone else to have an NHS assessment, albeit the wait times are long. If you do go private, check out the qualification sets of the provider. Do they have expertise in co-occurring neurodiversities, such that they can rule out ADHA if it doesn't apply to you. Do they assess as a team; psychiatrist (?) or clinical psychologist with speech and language specialist etc. You should expect a proper, detailed profile report after your assessment. Your assessors will want all those observations from your friends and family too.
As for work...depends on your work and what their attitude is like. My employer is brilliant. I've had so much support through the whole process. Not everyone has that experience. Legally, an obligation to make reasonable adjustment for you follows a diagnosis and it's disclosure to them.
Otherwise, welcome to the community. Huge relief when you figure it out, eh?