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 Nutski
Just read your post (haven't been on here much lately). I'm a female Aspie in my 50s. I had wondered if I was one when I saw a documentary about it, then early this year I suffered badly with stress and anxiety and took the online AQ test, on which I scored as highly likely to be AS (40 out if 50). The GP I saw has a background in mental health and agreed it seemed likely, but although he offered me a referral he told me it would take a long time and would not lead to any support, as I generally manage OK. He has put my AQ test results on my notes though.
After some consideration and reading about the diagnostic process, I decided it would not be helpful - in fact, I believe I would find it stressful, so I declined the offer of referral. I know what I am now and this enables me to understand my reactions to situations and cope more effectively.
I also decided not to have CBT, as I read that it is mainly to train you into changing negative thought processes which lead to depression. This therapy has helped a friend of mine as this is a problem she has, but my problem was not negative thoughts, it was the typical autistic problem of getting anxiety overload. I read a book by Ruby Wax called "Sane New World", which suggests various ways of coping, and I adapted the process of Mindfulness to arrive at a way of avoiding meltdowns.
Two other books have helped me: " Am I Autistic? " by Lydia Andal is a good guide for self diagnosis and advice about clinical diagnosis. And "A field guide to earthlings - an autistic/asperger view of neurotypical behavior" by Ian Ford helped me understand "normal" people better, which I feel has helped my relationships. If you are an Aspie, you will also know that for certain after reading this book, as you won't identify with the "NT" traits of "normal" folk described in it!
Hope things are going better for you now.
Take care, Pixie
It's really difficult to squeeze proper, actual psychiatric care out of the NHS. Usually they will only offer you counselling (which isn't what you need) or group psychiatry / CBT which doesn't work when you are autistic / Asperger's. The NHS's handling of mental health is figuratively a train wreck and literally diabolical.
What is this 54/240 BS anyway? The actual respected adult-diagnosis test (it's from a university, Oxford or Cambridge I can't remember which) is a points based system where if you score almost 30 points you are registered as having mild, high-functioning Asperger's syndrome. Think I was just over 30 points and I can have some melt-downs let me tell you...
Your best bet is to look into this privately. Yes it will be expensive, around £200 a session (hour) for someone who actually knows what the heck they are talking about. That shocked me when I first learned how much it costs, but I pay for one session a month (or one each couple of months now) and it really has changed my life considerably. I ended up seeing a man named Dr Sanjay Jain in the Priory mental health hospital in Woking and he's an expert on mental health including ADD, Asperger's Syndrome and other ASD related stuff. He actually writes books and papers and is on the forefront of treating this stuff.
To get his attention for £200 an hour was actually amazing. I don't know if he even still has slots but if not there will be someone in your area who is also fighting the good fight. You need to find them and use them.
Don't wait for the NHS. Don't expect anything free to be half decent. Get proper diagnosis and treatment if you are really confident you are ASD / Asperger's.
NHS is a tick-box culture. If you have a physical illness like Cancer you will recieve the same standard of care as privately (the waiting times are just different). If you are talking dental work or mental health, that no longer applies so be really careful what you accept off the NHS as you could end up more messed up than before :')
If you possibly can, please please go elsewhere.
Check out: research.agre.org./.../aboutados.cfm. - and read all about it, sort of thing. Or seemingly not, as the hhtps address does not work it seems. but look it up on google.
Deepthought said:ADOSThe Austic Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autistic or other pervasive developmental disorders.
ADOS
The Austic Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autistic or other pervasive developmental disorders.
Can't say I've done one of those - what are they like? What do they involve?
Sorry, may I ask what an ADOS test is? I don't think I had one.
Also, how long did you see the psychologist for?
Thank you so much for taking the time to reply.
I did ask in the results appointment if they would refer me for CBT, as i struggle with my son's (we are very close but tend to clash, both being having anxiety and over thinking everything!) and relationships in general, and she did said she would try but im not holding my breath...
Its so very frustrating to be left hanging, I mean just saying no you dont have autism and basically dismissing all the traits and just saying all people have things they struggle and im just different (basically troubled) - quite frankly isnt good enough. The end of the report actually says "no significant mental health issues" - what the hell does that mean??
But maybe i should just let this go, be happy that im now better aware of myself, whether im right or not about the autism, and pursue a referral for support without a diagnosis. From what ive read from others who have got the diagnosis it doesnt necessarily get the support and understanding from family / friends / nhs anyway!?...
x
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.