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Is it worth pursuing diagnosis?

HP35

I'm almost 35 and pretty sure I'm autistic. I don't "get" people and get extremely distressed by disruptions to routine. I feel exhausted by interactions with people as I feel like I have to "act normal" and have meltdowns if I don't get enough alone time (8 hours a day is about the minimum I can get by on). I often struggle to recognise people out of context. I am very sensitive to loud noises, hate strong flavours, and wear only loose clothing and no footwear because I can't stand things pressing on me. I'm a lifelong toe walker.

No one had heard of autism when I was a child, so I was labelled variously as "shy," "fearful," "antisocial" and "odd." My mother read a book about autism when I was about 16 and was like "this is exactly you!!!" but I think she figured it was too late at that point so never pursued diagnosis. I didn't know how to see a GP at the time and had no transport to get to one.

I've always just tried to get by the best I can. I hate going to the GP because all they care about is trying to bully me into smear tests (I'm not sexually active and HPV negative) and they never provide any help with the issues I go in with (I've been multiple times for help with lifelong diarrhea and anxiety, but haven't gotten anywhere). These days my GP surgery also doesn't do appointments for anything non-urgent (it's not just me - my ex can't get a review appointment for medication - it's not that there's a long wait, the answer is just "if it's not urgent, then no.")

Is it worth changing to a further away GP surgery and trying to get an appointment? Do you actually get any help when diagnosed or is it just a label? I'm self employed so don't need work accommodations or anything like that.

I'm estranged from my family (Dad, who I'm pretty sure is also on the spectrum, is violent) so I don't have any documentation from childhood - no school reports, photos, anything like that. I've managed to track down my GP records as far back as my mid-20s, but before that there doesn't seem to be anything. I remember getting speech therapy as a child, but couldn't give any details about it. I know I very rarely spoke until I was about 7, although I could read when I started school at 4. I'm not in contact with anyone that I met before the age of 20.

Is there (a) any chance at all of me getting a diagnosis, and (b) any point in doing so?

  • in reply to HP35

    Yup! IBS in a proverbial pain in the...lol and other than play with your diet to see what triggers, not a lot helps.

    And why yes indeed, there is nothing stopping you just self identifying and taking on board whatever autism strategies work for you. Not everyone wants a diagnosis. I know a couple of people who just know they are on the Spectrum...and errr...well, I'm not qualified to diagnose, but errr I'd be surprised if they weren't. Wondered why I relate to and am so fond of them, lol. But they haven't gone for a diagnosis.

    Where I think it does help though is in those instances where you need some recognition to have a significant need met.

    But, hey! No one is going to care here whether go for it or not. You are more than welcome and recognised here, either way :-)

  • in reply to Dawn

    Yes, I've been told it's IBS by the GP after testing negative for celiac and having no inflammation markers in blood. But that's the end of the line as far as they're concerned. They gave some pills that did nothing and then told me to buy immodium. Which works to an extent but takes a very long time to start working and had side effects. I've done the fodmap exclusion and reintroduction diet myself and found my symptoms are if anything slightly worse when sticking strictly to low fodmap diet which is recommended for IBS. I figure if it was anything potentially fatal I'd have died of it by now.

    Can I just follow autism guidance without diagnosis or is it worth fighting to get diagnosed first?

  • God yes, the diagnosis was worth it for me. But each must make their own decision.

    Your digestive problem could well be IBS, which is super common in autism. But it needs checking out to make sure that's all it is.

    I'm appalled by your GP. I know and understand that post pandemic, they are busy and frazzled but they can't just ignore the routine stuff because otherwise it will become urgent.

    The GP is one area where a diagnosis should help. They should make some 'reasonable adjustments' for you to see one.

    There not a lot of support post-diagnosis but understanding yourself can help you identify where you get by and where you need others to accomodate a bit and help you explain why. It will also give you some better strategies for managing anxiety. It is different for us and needs an autism informed approach.

    Don't worry too much about the lack of childhood documentation. There are ways round that.