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.
Love the analogy
My first psychologist said she thought about using it with me but knew I’d see straight through it, which was an interesting comment given I was undiagnosed at the time
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?
Sorry to go iff on a tangent but re an indiviual's reality....
This is like frame of reference in physics.
Someone on a moving train throws a ball. They see it go up and down. To an observer watching the train go by would see the ball curve. Both are correct interpretations even tho they are both are different realities.
Who is to say which is right and which is wrong?
The cbt info was very interesting and makes complete sense now. This is very helpful reading what you have all gone through and still experiencing. It helps make sense of things. Maybe we are not faulty humans. Maybe we are just a different variety!
Hi Zosh thank you, as out_of_step has said the article you linked to is so amazingly good at describing “otherness” in a way I find easy to understand,
a massive thank you for opening my eyes to such valuable information.
I would suggest others to click on the link as it turns the whole idea of autism being a negative into why it should be a positive, even DSM are guilty of poisoning the NT and ND mind by the very descriptive negative words it cites as descriptors if autism presentation.
take care and be happy, be YOU.
Zosh said,
”But then I must have read something that triggered it off again (I think it was an article by Katherine May on the website Aeon https://aeon.co/essays/the-autistic-view-of-the-world-is-not-the-neurotypical-cliche) and I started thinking I really need to know either way because my mind won't rest.”
Zosh, that link (aeon) was an excellent read. I have touched on these sentiments myself (only in my own brain) but the author goes into far more detail and explains the concept of "otherness" brilliantly. Thank you for sharing.
I dont think AS should be labelled as a disorder but as a condition. AS or NT, it is an individual's reality.
I'm really pleased you went back and have got an agreement to be referred. Your post sounded so much like me I could have written it myself. I decided to not even bother trying to convince the gp to refer me and went private. I also wanted to avoid long waiting lists so the whole process took 4 months.
I just wanted to say about CBT. I have had so many courses of CBT and none have really worked. When I got my diagnosis of autism, the psychologist explained that CBT isn't helpful to undiagnosed autistics because it assumes that changes can be made to the way we think, and actually we can't change the way we think because that is how we are wired. For example she said that in CBT the therapist might consider that your black and white thinking is unhelpful to you in a particular situation and might try to tell you to change your black and white thinking to consider the grey areas. But the black and white thinking is how our brain is wired so we can't change it. Once you have a diagnosis and then have CBT it is like looking at it through the correct lens. You need a therapist who understands autism who can use different strategies to help you rather than trying to change a pattern of thinking that is part of the autism. I hope I have explained that properly.
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.
Hi Zosh. Thanks for the email. My fears about confidentiality arent because Im ashamed. I just want to take this at my own pace and if it wasnt privaye i eoyld ne unable to do that. I discussed this with my gp and was very understanding and talked me through the whole proces and advised who would be involved in the process. The other thing that is holding me back is that the person who would be carrying out the diagnosis would be the general psychiatrist for the whole area and so not someone who is doing diagnosis on a regular basis. I would definitely feel more comfortable being diagnosed by experiend people who do it all the time. I am in many ways releived to at last think there may be an explanation for my differences from other people. Since being on this site I have felt some relief in realusing there are others out there who think like me. Its a bit mindblowing! Thanks again it helps to think things through.
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
Thanks NAS38259. I used to live in a small town too and would regularly go to the mental health clinic worrying someone I know would see me. As much as I want to say it's absolutely not something to be ashamed of and that we should be accepting of all kinds of people, I completely understand your fears because in reality there is still a lot of misunderstanding about this area among the general public (the article by Katherine May I linked to in my response below mentions this too). I do think that is gradually changing though. It's a shame that is stopping you from seeking the help and advice you need because if seeking a diagnosis will help you then that is something that you really deserve!
I hope you come to a decision (no matter how long it takes - I've been there!) that you are happy and comfortable with. I'd be interested to hear what you decide to do. Did you speak to your GP about the confidentiality concerns?
Hi Lonewarrior, I completely understand the worry about going through the whole process then being rejected. After the relief that I am being taken seriously, the possibility that I am actually wrong about this is going to get stronger up to the day of my next appointment, I think. It's quite a lonely prospect to think you've found a group of people you can relate to so strongly (finally!) and then have that taken away from you.
After my first GP appointment, I wasn't thinking about it as much and I wondered if it was really worth going back to try again to get a diagnosis. I was always thinking about this stuff but not as much as I had been before, so it wasn't bothering me quite as much. But then I must have read something that triggered it off again (I think it was an article by Katherine May on the website Aeon https://aeon.co/essays/the-autistic-view-of-the-world-is-not-the-neurotypical-cliche) and I started thinking I really need to know either way because my mind won't rest.
I think what is bugging me so much is the uncertainty due to the fact that I'm not an expert and haven't spoken face to face with anyone who is aspie/has ASD about this. I hope that even if they conclude that I'm not, at least then I will be able to put it behind me. Maybe I can then start thinking of myself and my struggles in a way that is more helpful. Although, knowing me, I'll probably keep thinking maybe they made a mistake or I didn't answer questions accurately and I'll want to get re-tested. But that's just me and if you're happier as it is without a diagnosis then that's obviously totally fine. Although I've not been involved in this area for very long it seems as though there are loads of people who are happy to be self-diagnosed and the community is very accepting of that, which is good.
I wish you all the best!
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.
Pleased for you Zosh. One step forward. My gp agreed to refer me too if i want. I am holding back as i live in a small town and scared it wont be confidential. I dont wantcpeople to know unless i have decided i want to tell them. I know its supposed ti be confidentia etc but anyone whos lived in a small town knows thats not always the case. I would prefer to go private but cant afford it just now. Once i think it through (over and over hundreds of times ha ha!) i might think about taking out a loan to pay for it. But in 2 minds about it all. Hope all goes well with you. Wull be interested to hear any further experiences of process.
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.
Borderline. Still finding out about all this so I feel caught in the middle. Neither nor.
Hi
When I went for a diagnosis i went armed with my ASQ-50, Aspie Quiz, Empathy Quotient, Myers Briggs INTP and Enneagram trifix. Hence I had enough information to justify that I am autistic. What is your AQ-50 as that’s s good place to start.
Thanks
Andrew
Hi Zosh
The truth is I couldnt tell you if cbt works or not. All i know is it seems like a chore and i never did it. But i am not properly trained so you are probably best to take advice from an expert and find what works for you. Half the trouble is figuring out whos the expert and who just trained in evening classes at a local college! Re referal for diagnosis - I think with the NHS be clear and sure and a bit pushy dare i say for what you want. No-one else is likely there to do it for us. So lets go and give a good try!! It is so easy just to comply with the staus quo when at a doctor and then come out saying why didnt i say this or that etc. Goodness knows how i will get on. Good luck to you though. Will be interested to hear any updates.
Hi, your psychotherapist sounds great! I'm struggling with CBT right now. I keep deciding I'm going to quit then changing my mind, thinking I might as well see it through to the end. I know what you mean them using CBT as a cop out. The way it's structured I feel almost like you're kind of led to report back that it's helping and that you feel better but I just wonder for how long after you stop seeing your CBT counsellor it will carry on working for. I could rant on about it for ages but I won't.
I'd be interested to hear what your GP says. Good luck! I hope they agree to refer you.