Published on 12, July, 2020
Hi
Well im female and 42 years old with a son recently diagnosed high functioning and I just put myself through assessment, after a year waiting for it through GP, and came out with a report that basically puts my anxieties down to shyness and 'childhood anxiety / trauma'.
They basically noted that because I had eye contact, good non verbal expression, am social, have emotions, very creative, dont have repetitive behaviour interests, and that I cope, I dont meet the criteria. Althought they noted I scored 64/240 (not sure for what test, but 65 is cut off).
I was shocked at this, after hours of discussions explaining my struggles as a child (basically didnt talk to anyone i wasnt close to, always felt differentm and was called weird at school) and in adulthood, particularly with relationships and socially in groups, hypersensitivity and clumsiness. I was also aware that there were aspects they hardly/never touched on which would have a bearing on a diagnosis. They were looking for typical traits as achild and of course im an expert at mimicing social behaviour and my determination and obsession with subjects im interested in have made me successful in work. But it has also caused me intense anxiety and a period of phobia which I also overcame myself. But just because I "cope" thats not to say im not struggling and the destruction its causing...
I was/am still 99.9% certain of my ASD/Aspergers and there is a clear history of aspergers/bi polar in my family.
I am really quite angry with the NHS for basically ignoring alot of the points I made in over the assessment and I also feel my mother's contribution may have been detrimental rather than helpful to a diagnosis. Her memory is unreliable and our relationship isnt exactly normal, she is quite manipulative and may well be on the spectrum too. I took a risk asking her to be part of it but I had no one else. My father even more unreliable as he has a mental health condition apart from the fact that im estranged from him.
I only saw one psychologist, one other sat in on the ADOS test, which I found excrutiatingly stressful, and I cried at the final report which left me feeling helpless without any diagnosis or even reason/validation for my experiences/traits/feelings.
Anyone else had similar experience? Should I persist with this or is it a waste of time and emotional energy to fight? I emailed the psychologist to say I feel much of what ive said hasnt been taken into account and waiting to hear back.
Hi honey, I didn't want to read this and run. It sounds like you've had a really horrible time in all sorts of ways...I am Aspie and bipolar and other mental health things, and I can relate to a lot of the things you've said about your diagnosis, the being able to mimic behaviour, being creative, not at all being what people seem to conventionally think of as "autistic" and so on, etc. I found the ADOS an incredibly stressful and upsetting experience too, and it has made a big negative impact on me...what these professionals never seem to realise is how emotionally sensitive people on the spectrum can be, as you say, a lot of them appear to think we're robots with no emotions which is often the complete opposite of the truth, as well as this idea that autistic people can't be creative...I am a writer and some of the most creative people I know are also Aspie. Sometimes I wonder if there will be any hope until people open their eyes to the truths about being on the spectrum and stop paying so much attention to the stereotypes. It presents differently in every single person - there may be similarities between cases but at the end of the day, we are all unique, no two people are ever exactly the same. I'm no good at advice but if diagnosis is something that means a lot to you and you feel it could help you, then...basically, I am currently really struggling with my emotion regulation and I believe that a type of psychotherapy called DBT would help me, and it is tiring to fight for it but I intend to keep doing so as it means a lot to me and it's what I think I need. Stay faithful to what you think you need. Not a very good answer but it's all I've got, I'm afraid! I'm on here if you would like to chat more. Lots of love to you, and good on you for emailing the psychologist. I hope you get a helpful answer.