Waiting list for Diagnosis

So at 22 I've realised i may be on the spectrum, I've been feeling overwhelmed by the uncertainty though as I want to be able to fully embrace it as part of me and meet others affected but i feel like i can't do this until official diagnosis as I don't want to claim to have something if i turn out to be wrong. I have heard the waiting list is long but i want to be in the queue but being in Wales, with a welsh GP (they don't have to refer to psychiatrists even if you request it) I'm soon to move back to england but i'm not sure i can get on the waiting list without an english GP. If anyone has advice please let me know:)

  • Hi, I'm a similar age and location to you  Matt Blush

    To the OP, I was able to self refer in my area (neighbouring borough to Manchester) and someone advised me to query if I could be assessed at short notice if there was a cancellation. I think I must've just sounded desperate because suddenly an 18-24 month wait became being assessed in just over 3 months. It worked though so it was worth it to sound a bit needy. 

    I'd look up for autism pathway for your area in Wales and find out if you can self refer. If not, choose a GP with a good reputation at your practice and before you speak to them write down why you think you are autistic. Use the criteria to work against and tell them what online tests you have done. 

  • If they are bouncing around BPD then yeah, super important  in my personal view to get an assessment.  Anxiety seems to go with the autism terrain for many - certainly does for me, but there are quite a lot of either misdiagnosis (especially in women) of BPD when it's actually just autism, or else the person does have BPD, but undiagnosed autism is underlying it and that person isn't going to make any progress till they identify that.  Same with some other conditions like OCD or eating disorders. So, maybe you don't have BPD, or maybe you do but it's only half the story.

    I'm starting to understand now that my body/medical phobias aren't just phobias in the usual sense, they are partly rooted in all the wacko sensory stuff. So, not just psychological but neurological too.  (When your body doesn't even tell you when you are hurt or hungry, or you go to catch a ball and it tells you its in the wrong place... the body is a scary monster which is always misleading you.) Clearly, I'm never going to crack that one until I understand why my senses don't do what other people's do.

  • Hi yeah similar situation from what i read on your reply - doctors previously bounced around anxiety, BPD etc but none felt fully right or explain everything properly at least not to my mind haha 

    Thank you I will definitely try to contact my GP to get onto the wait list and will look into Mind's resources as that seems really important - it can be hard to distinguish what is me and what is extra issues like depression on top of the possible neurodivergency:) wish you all the best

  • Thanks so much for your reply:) It definitely seems like a whole process but i also understand why they are careful not to misdiagnose. I definitely can relate to a lot of ASD experiences but was in denial for a while about it whereas i now see diagnosis as a positive thing that can help me understand myself:) Wish you all the best 

  • it is best you remove the image of yourself  --- it is against the rules,,,,  not my rules 

  • Hi,

    Yeah, I get that. Although I'm recognising all the diagnostic criteria in my self, I want an expert to tell me what's going on.  I worry there might be another explanation I've overlooked; try as I might to eliminate all the other possibilities myself, investigating every thing from panic attacks to personality disorders (though none fit my internal landscape).

    This started as a need to be accurate in what I am dealing with to access the right care, but yes as a bi-product, this is becoming an existential question of identity.  Who am I?  Well, exactly who I always was, but: Why am I me? I am increasingly thinking they are likely to tell me I'm autistic, although I'm still questioning everything for alternative explanations, they might tell me I'm just short of the criteria but have traits (I'll believe them), certainly my sensory system IS right royally skewed and if they think it's something other than autism I pray to God they can explain that one somehow, because THAT is the only truly disabling part of this for me.  The rest I have been compensating for all my life and can happily learn to embrace with open arms, but I have to know.

    As for your GP... Yeah, I gather about two years is the wait time in my area, so you do need to get on a waiting list. I'd try with your GP now.  There are a fair few self tests on line, which although aren't diagnoses, are the indicators professionals use to decide whether autism could be worth assessing for.  The NHS one is AQ10 and can be found online.  I wrote to my GP actually outlining why I wanted to be assessed, noting the primary childhood factors which could be indicators, enclosing the online tests and describing what I think the detriments to my life are and health care are.  He sent me an AQ10 and then referred.  Something like that ought to help your GP understand that you don't want an assessment just for a fun day out, but because it's important.

    If your Welsh GP doesn't refer, try again once in England.  If he does refer, you might want to check what happens administratively to your place in the queue if you move while you are waiting.

    While you wait, Matt's advice is good.  Your GP might also refer to other services.  Mine made a referral to MIND Adult Autism Services.  I spoke with them and they are going to enrol me on the next available course they run for people awaiting assessment.  They treat you "as if" in the interim and teach you how to 'energy account' and to distinguish MH issues from autism etc.

  • I was in a similar situation to yourself, not wanting to self diagnose. In Manchester at least, the waiting list was quite long but they take into account your current wellbeing as well. After getting a GP referral I waited about 5 weeks for the initial phone call, then a year until they contacted my parents for their part of the assessment, after that it was another chunk of time. From GP referral to diagnosis it took about 2 years. (I'm 29 now).

    It's worth spending some time reading up, you'll find that some traits of ASD won't be applicable to yourself and others will, use the time to get a better understanding of ASD and yourself, it will hopefully make the whole process easier. Hope this helps.