Published on 12, July, 2020
Hi,
I know there area lot of posts like this but I don't know what to do. I'll try not to ramble on for hours and get to the point! [reading back on this I failed majorly on this point]. I'm sure you all know what it's like anyway but here it is: I've always struggled with things that should have been straightforward (particularly social things but there are other things too that were there but I've always fixated on the social difficulties as the most problematic).
I don't remember how but a few months ago I started reading about autism in females and started crying because it was like I was reading about myself. It was weirdly a happy moment because suddenly it made sense and I could understand why I am how I am.
I decided I wanted to go for a formal diagnosis because otherwise I will always question it - I'm not a professional and I don't know anyone who is autistic (that I know of, I mean I hardly know anyone anyway!) so I don't have someone who really knows about this to talk to. I went to my GP and brought written evidence with me because I knew I wouldn't have been able to explain it all properly in person. I was really emotional while talking to her. She said to come back in a week so she could have the chance to read my notes. I missed the appointment because I got the time wrong - I had it set in my mind it was an hour later than it was and it wasn't 'til I was on my way that I saw my phone calendar and it said the actual time!
Anyway I saw her the next week and she said "it was very interesting to read your notes" but that "there is really nothing that we can do", by which I think she meant that even if I were referred for a diagnosis and they did diagnose me as having ASD, there is nothing that can be done after that to help me so what is the point in referring me? (Although she didn't say that many details, she literally said what I put in quotes.) She said I should carry on with the CBT (Cognitive Behaviour Therapy) I'm currently doing (which kind of helps but it's really just more to think about, although I know it takes a lot of hard work to make it work so I'll keep trying). She suggested I do an online questionnaire (that wasn't on the website she said it was, but someone from that website pointed me towards a questionnaire on another site it turns out I had already done and scored above the ASD threshold, but silly me forgot to mention that in the appointment). Then she recommended I read a novel "Eleanor Oliphant is completely Fine". And that was it. I didn't protest or say that getting a diagnosis was really important to me because I was just focussed on trying to process what she was telling me and that occupied the whole of my mind at the time.
Without a decision either way from a proper diagnosis session, I feel like I will always be questioning myself. But at the same time I don't want to waste NHS resources (I live in Scotland, if that is of any help as to the situation regarding resources for adult autism diagnosis) because on paper my life is fine. I'm grateful for that and I understand that I am relatively fortunate so maybe less deserving of a diagnosis. But at the same time every single day is a huge struggle. I have no friends and never want to socialise although I feel intensely lonely sometimes that I'm not on the same wavelength as anyone. I worry about being withdrawn and isolated constantly and I wish I wanted to socialise and be "normal" (but a lot of the time I'm ok knowing I have one person who I can count on - my partner, although he doesn't know how to deal with me when I am having a "meltdown" or feeling anxious about something that I "shouldn't feel anxious about". I'm a huge strain on the relationship and I don't know how much longer it will hold up, to be honest.
I'm so sorry to have kept writing this long! I really wasn't meaning to tell all like this! It was meant to be a quick "GP wouldn't refer, do you think I should try again". It wasn't meant to turn into a therapy session! If you have kept reading this far, thank you so much. Anyway, I suppose I would really like to know what other people think - what would you do if you were in my situation? Do you think it is worth me going back to the GP? I can't afford a private diagnosis. What should I say to the doctor if I go back?
Here's more background of why I think I might have autism that I had originally written at the top but it's too long so only people who really want to need to read it! I was very quiet and withdrawn in my childhood (with occasional really excessive "tantrums" at home - never at school - when I had to do something I didn't want to - usually something social), the same as a teenager with added emotional outbursts. I was back and forth to the doctor throughout the whole of my 20s getting diagnoses of depression etc. A couple of years ago someone I knew in a professional context suggested I look into whether I might have a developmental disorder (not naming anything in particular, but she had personal experience of that sort of thing). I started off looking into a problem that led nowhere so I thought it must be depression/anxiety after all (but these never quite summed up my particular experiences - as I said I have always felt how I feel, among other things). I considered looking into whether it was autism but many of the typical characteristics just didn't fit me at all. However, reading about female autistic people feels like a spot on match for me though.
Thanks everyone for your help and support. It's so reassuring to hear everyone else's experiences and points of view. Thanks to you all (Former Member, NAS37595 , NAS24859, NAS38259, Handi-andis), I finally went back to see a different GP today after preparing with test scores and things like Handi-andis said in their replies and she's agreed to refer me! I didn't even need to bring up the AQ etc test scores but I agree I probably should have mentioned that the first time round. It's going to be a few months' wait but at least someone's listening to me.
Really pleased for you Zosh, I had read your first post and felt terrible about how your request for a diagnosis was denied so casually.
I am un diagnosed and probably never will try to get one. Yes I do need to know and yes I struggle through life. I just couldn’t go through the process then be rejected.
I am so happy for all the people on here who finally get referrals and eventually a diagnosis.
Take care and I hope the wait isn’t to long for you until the diagnosis process.
Lonewarrior. Have you gone through the ASQ-50, Aspie Quiz, Empathy Quotient, Myers Briggs INTP and Enneagram trifix, and do they indicate that you are aspergian? As if they do then that would give a pretty good indication, which you could follow up with the RAAD-R test. As if everything points towards Aspergers then its statistically more likely that you are then you are not. Or to put it another way, whilst one can have severe autism traits and yet be neurotypical, to be so would make you one in a million or ten million or a billion depending how far along the spectrum you were, which would make you pretty special in your own way . So fear not Warrior, you are not alone, you are in a community of like minded people searching for or forging their own way through life. Thanks Andrew
Those scores would certainly be indicative, however, the changing nature of the score gives issues particularly with your comment about you thought it was changing as you learnt more about Autism. That would tend to indicate someone trying to make themselves fit a set of symptoms rather than being honest about their symptoms. It would be interesting to see your answers to the check questions, which are meant to look for that. In a depression questionnaire such questions would be things like “do you think about suicide all the time” or “do you feel down all the time and nothing gives you enjoyment”, to which someone trying to get a diagnosis would answer yes and yes, where someone with depression would typically answer no and no.
That said was this the first time you’ve taken the RAAD-R? As it’s got good specificity and a good detection rate. Your score on it is broadly similar to my own so I would say personally on the balance of probabilities you are Aspergerian and you are going through the journey of discovery that everybody goes through if they get a middle age diagnosis.
So the question then becomes, donyou need a formal diagnosis? What benefit would you get from a formal diagnosis?
Hi Andrew I have done many of the tests, and am in no doubt I am aspergian!
I do consider this forum and everyone on it as my tribe.
We are all individuals but we seem to really understand so very much about one another.
I have been on my journey of discovery for just over a year now, this forum and the people on here have helped me to really understand just who I am and why I am the way I am.
My aspie quiz score first time round was 188, that was when I didn’t really understand autism or myself, I hit a low when I thought I was seemingly an aspie Male! I had only heard negative words towards Male Asperger, I re did the test to try and reduce my score, it changed but increased to 192, it took some very kind and understanding friends on here to show me that the concept I had heard was so very wrong, the aspie Male is In no way a negative being.
I did the test again tonight and yep it has changed yet again, now 194!
I can only think it has increased as I have found out more about myself and allowed myself to not only accept who I am but have belief in who I am.
AQ=40,
EQ=25,
SQ=112,
FQ=31,
SPQ=48,
RAADS-R=216.