Published on 12, July, 2020
Hello,
I haven't told anyone about getting a diagnosis, mostly because I am afraid of being wrong or their reactions. A few months ago I worked up the courage to go to the doctor after being terrified of getting help for over 6 years, to request a formal diagnosis. Filled out a really long form in which I scored likely to have autism, doctor herself said she thinks I'm ND, so we fill out this questionnaire together and she sends it off to the ASD team. A month later I find out I have some missed phone calls and see from my patient record I was denied a referral for not having enough traits despite having a 'high score'. They recommend getting a further appointment with the team for a further questionnaire and referral. I don't have the courage to pick up the phone and I've been struggling alone for years feeling like an alien. Every 'help' that is offered always requires phone call or verbal communication which I struggle to cope with. When I went for the initial appointment I couldn't get the words out of my throat and ended up crying in front of the doctor. Are there any resources where I can communicate with someone or get help through messages or email? And what should I do regarding the referral denial? I know private is an option but I doubt I can afford it and it still involves the whole process of communicating with people. I've been trying to get a formal diagnosis so I 'know' for sure and I can finally tell people and lift this weight that's been on my shoulders for several years, it gets so overwhelming I feel like I can't breathe sometimes. I don't want to tell people I have ASD and be self-diagnosed without an expert opinion.
Could I please have some advice or suggestions and has anyone else felt this way or had this experience?
Thanks.
Hey Bonkasaurus. I completely relate to your feelings. Well done for mustering up the courage to actually go to your gp to start the diagnosis process, and, I really feel for you that after all that you then get this knockback. Rereading what you have put actually doesn`t sound like a total knockback, as they wish to further investigate. I would not know what the best steps to take are, as I have not gone down the official diagnosis step yet (-was thinking I didn`t need to label myself but I really do struggle to feel validation when it is just my self-diagnosis??!!!). Maybe set about writing down some things for when you go back, if you haven`t done that already. Keep going, if this is the route you want to go down (-which I am sure it is, as you have already set off). I don`t like phonecalls either, but you could also write down who you need to speak to, what it`s about and what you want to say (-I`m thinking this initial call would be to rearrange another appointment as opposed to doing any further investigating). Really, don`t give up at this stage!! Let us know how you get on and I`m sure someone else on the forum would be able to offer up more useful words of advice.
I 100% empathise with the self-diagnosis validation thing. Maybe if we genuinely trust our instincts and self-diagnose (I know I know myself better than a GP I've known for 30 minutes during which I had to condense my entire life history in) then that is enough? Just knowing who we are without that confidential bit of paper which confirms it? I tend to avoid self-diagnoses because I know they can be harmful but when it comes to the mind it is very difficult to get people to understand.