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.
First of all, welcome, and don’t worry about what you think is a long post - have you seen some of mine!!!!
And second, you are just as deserving as the next autistic person, to get a diagnosis. Most people who are not autistic, are unable to comprehend how important a formal assessment is to us and it’s not easy to explain. It’s probably a bit like trying to explain the colour green to a blind person.
Here’s my advice. I would write down all the reasons why a diagnosis is important to you, for several reasons, not least so you can be confident in them yourself. Then I would go to the page on this site, which sets out, clearly, the diagnosis pathway and how to access it. I think it has information that you can print out to take with you to the doctors. You can also contact NAS, either by phone or online, to get more support. So yes, I highly recommend you go back to your doctors, armed with more info, confidence and clarity, and this time, don’t leave the office until the referral has been made.
For me, I simply could not live another day in this world, until I had had the assessment. It was life to me. It enabled me to get to know who I really am and that is something that’s vital to every living person and the only way I personally could do that, was with a formal assessment. So I would go back and refuse to leave without a referral. I wish I lived closer to you because I would go with you.
You replied to my post earlier today, and I have only just realised you posted this. I am a female with autism, and after listening to a radio programme about females with autism realised that I could be autistic . This was important because at the time I was under the mental health team, who were struggling to find an accurate diagnosis. I told my psychiatrist and fortunately she agreed. I was diagnosed a few months later.
I do not think your GP is correct when she says there is nothing that can be done after diagnosis. Not only can it be a HUGE relief to finally understand your difficulties, but it opens up a range of specialist support from people who can finally understand you. I have an ASD support worker who does 1-1 workshops with me to work on things like assertiveness, relationships and emotions, and I attend an autism social group. I don't know whether you work, but having a diagnosis has helped me work part time with adjustments like noise-cancelling headphones and regular breaks.
For my diagnosis, I was initially referred to an autism charity. They did a pre-assessment with me, which included a chat with my parents and competion of the AQ-10 test, before referring me for formal diagnosis. This way, I completely bypassed my GP, but the official diagnosis was eventually made my the NHS and my GP was sent a copy and agrees with it. It might be that I would have been referred by the GP anyway as I had been in hospital and was receiving community mental health support, but it sounds as though you have genuine reasons for believing yourself to be autistic and this should be assessed. It also sounds as though your GP kind of agrees, but just doesn't feel that it's beneficial. I would recommend seeing whether there is an autism charity in your area, and go through them. If not, go back to your GP and tell them how you think it would help you, maybe take somebody with you for support if this is possible
From reading both this post and your response to mine, your experiences seem very similar to mine, and I really hope your GP or somebody else will offer you an assessment. Good luck!
I'm sorry you're going through this. I asked four psychiatrists for a referral (I saw a new one every six months as I always had the trainee). They all refused to entertain the idea that I might be autistic rather than having a MH condition and when the last one only gave me the screener questionnaire to send to the local autism dept to shut me up. Keep persisting and if you don't get anywhere with this GP try another one. Alternatively, you could find out the contact details for your local autism center and ring/email them to see if you can self-refer.
hi zosh. This is my first time on this site. I am in scotland. I only found out a few weeks ago that there is a high possibility i am hfa. My psychtherapist who i went to see to help me deal with some stuff suggested i take a test which showed it was highly likely i was hfa. She said it was her experience that i may not get referred to diagnosis by nhs but it was worth a try and she was willing to support me. The alternative of course is going private but this costs around £2000 i think. After several weeks of debating with myself if i need a formal diagnosis i have decided i do. This is because i feel i cant say to people i have it unless it is definite. I have booked an appointment with my gp and going to find out her response. I feel fortunate that my psychotherapist is so realistic. She is not a fan of cbt...halleluljah! What a relief when she told me that. I always feel therapists etc use cbt as a cop out almost....but it is ok to have all those different feelings. If i find out any more i will aim to update.
Hi BlueRay, thanks so much for your message. You've helped make me see it all more clearly. I think I'll try again and be better prepared this time. I thought I was last time but I really just didn't know what to expect so I just sort of went along with whatever she said. But thanks again for explaining clearly what I can do to make it easier to explain to the doctor.
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.
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.
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.
Borderline. Still finding out about all this so I feel caught in the middle. Neither nor.
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 (BlueRay, 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.