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.
Oh, and yes, use Right To Choose. Worked for me, all done remotely
You have to be your own biggest advocate (if you. don't fight for yourself then no one else will).
Pivot. Go to another Dr and convey your troubles.
Be bold. If it needs to happen for your mental health then it's a valid request.
Best of luck
This is super helpful! Thank you so much, I never realised much of it could be done digitally, I'll have a look into this and sort out an email to the GP. Thank you!
Hey Bonkasaurus,
Firstly, I fuckin love your screen name - for some reason it really made me smile!
Well done for working up the courage to go to the GP - that was super brave. And it sounds like he/she agreed with you that you could be ND so that's I guess a step in the direction you're looking for.
For me - from referral right through to assessment all of it was done digitally. I didn't speak to anyone in person until the day of my actual assessment. And I believe you can do this too.
I don't see what's stopping you from just emailing your GP and saying you want a referral again then asking for the 'Right to Choose' which is really important you include - this speeds up the referral. Make it clear on the email that you can't accept phone calls but you're happy to fill in any forms digitally. This is all possible. They will send over the initial assessment form, which you've already completed, and then you wait to hear from the assessment people, who will send more forms.
You will have to speak on the assessment but I requested mine was done on a video call which I found much better. I really struggle to communicate if I can't see the person. Again on this, you can have someone with you, so if you get too shy or overwhelmed they can speak for you.
If you need help writing anything I am happy to help via DM - I love writing.
Good luck!
Thank you, this is very encouraging. Usually when I make appointments I write down what I want to say and read it aloud to the GP, it does help getting my thoughts in one place.
In my experience, they always need you to call/ talk to someone which is really annoying. For some people who are ND that's hard, and for me and a few of my friends it was really difficult for us to get help for our anxiety/ depression due to having to make contact with a bunch of people when our condition made it super hard.
Is there any possibility you could go back to the GP and have them advocate for you? Could you write down what you want to say on a sheet of paper and either read off of that or have whoever read it themselves?
That's how I managed to get through seeing a GP about my anxiety. I wrote everything down and then read it out to them.
I definitely think you should keep going, though! I know it can be really hard, but you deserve to get this diagnosis.
A diary is a good idea, I find organisation helps me relax, thank you
I would say as well it's not a complete denial - just they want to do more tests with you.
Do you have someone you trust like a friend or family member who could speak for you? Agree what you want to say before the call then maybe put the phone on loudspeaker and have that person with you when you call them so if you can't get the words out, they can help you.
The problem is that you know yourself but you don't really know autism. You need a combination to get a reliable answer, and a trained professional or two plus all the information they get about you from the questionnaires and the two assessments is the best way. Self-diagnosis is an option, but I would kinda caution you against picking that just because it's the easy path.
Is there no one who you could trust to help you with the phone calls? Like I find those sorts of things super scary so my mum helped me with just making the calls and stuff and then I could take over when I needed to, because actually responding is much more doable for me than the initiating part.
Do they actually even understand when there is a diagnosis though??!!
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.
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.
Sometimes you've got to bite the bullet so make sure you arrange the next assessment. My assessment with the professional consisted of a lot of questions in a conversation style so you need to speak if you can. The history questionnaire you're asked to fill out should indicate to the professional if you're ASD or not, so that might be enough. Additionally you could write on the history questionnaire to say you've a problem with speech.
GP's usually ask you 10 short questions from the AQ10 autism questionnaire (https://docs.autismresearchcentre.com/tests/AQ10.pdf ). Based on the score it might result in a referral but their opinion (are you ASD or not) is unimportant because they're not usually qualified to assess you.