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Wondering if I should seek a diagnosis.

4 replies

WarrickDavisAsPlates · 26/11/2022 09:54

Hi I'm not entirely sure how to word this and I don't want to be insulting to anyone who is neuro diverse so I do apologise for my ignorance with this topic or if anything comes out in a way I have not intended.

Over my lifetime a few people have joked about me being autistic, I've never really thought much about it especially as it's usually in relation to things like, liking things to be neat and tidy, stressing about timing, needing to plan days, getting overwhelmed with noise or chaos. These things are just my normal personality so I just laughed it off.

However, a friend of mine who is autistic has suggested to me in a serious way that maybe people aren't really joking. She definitely thinks I could be neuro diverse, she sent me some links to articles and YouTube videos and now I am actually considering that maybe she has a point as everything on there was very relatable.

Would it be worth speaking to a professional? How would one even go about it? What if any difference would it make to know either way?

Thanks for reading.

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BoardLikeAMirror · 26/11/2022 12:20

Hi @WarrickDavisAsPlates

The process of getting an assessment is long and difficult if you go down the NHS route, and expensive if you go down the private route. If NHS, the first step is to speak with your GP and see if they will refer you. If private, the first step is to find a suitable diagnostic service in your area and contact them directly.

In terms of the difference it can make - as an adult, practical differences are mainly to do with the workplace in my experience - it can give you a platform from which to request any reasonable adjustments you need, for instance. Psychological benefits can be great - if you have struggled all your life, a diagnosis says to you 'actually, I am not a shit human being after all.'

There's also the possibility you won't be assessed as autistic, in which case this might help you identify what other support you might need.

It sounds as though your autistic friend is being very supportive, it might be worth asking her more about how she has benefited from diagnosis, as she obviously knows you well, to relate this to how it might help you.

Best of luck whatever you decide.

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ManageableLifeLady · 02/12/2022 22:59

I agree with everything Boardlike said apart from the difficulty of diagnosis.

I think it depends where you are geographically in the NHS and your history with your GP.

I had such a shit show of showing up bawling and collapsed every six months on average with my female and very good GP that when I asked her if she thought I might be on the autistic spectrum she had me in for a test with the SW mental health autism specialist in Cornwall within six weeks.

I went to my appointment and an hour later I walked out with a diagnosis of aspergers (now autism) and my disaster of a life and the shelf full of self-help books that didn't help made sense for the first time ever.

I think getting sent where you need to go promptly very much depends on A) where you are geo based within NHS budgets and B) how much time your GP has spent patching you up and how open you have been about your difficulties.

Reading what I have read about people really struggling and ending up on two years long waiting lists is really bad, but I can't say it was my experience as my GP was very good and she got me where I needed to go quickly.

Having said that she retired and now I have an abundance of GP's who don't seem to get to know any of their patients personally which I don't see as helpful and is why I now have an autism health advocate to bridge that gap for me.

Given that the best health care is person centered and requires GP's getting to know their patients. The revolving door of patient anonymity and multiple GP's is not going to have good outcomes for complex needs.

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xyhere · 06/12/2022 03:16

My advice would be...don't jump straight to "must have a diagnosis!". Find an autistic community online you can chat with in near-realtime, read through and join in the conversations where you feel you have common ground. Most of us are very familiar with the many "I thought I was the only one!" moments that occur, and it'll fairly quickly become apparent whether you have enough in common with the community for it to be worth seeking a diagnosis.

My journey effectively started with diagnosis-by-algorithm - the YouTube algorithm suddenly started persistently chucking autism-related videos at me. I ignored it at first, because they were all about "Autism in girls!" (I'm a guy, in case you haven't noticed my username), but eventually I watched a few and they basically described my life and internal perception of the world. In particular, I watched a lot of Yo Samdy Sam's videos, and ended up subscribing and joining her Discord server. I spent a couple of weeks talking to people on there every night, and it essentially became so clear that I'm autistic that I didn't even bother with a diagnosis and jumped straight to "Yep, that's me" - it was as though, after 40+ years of feeling like I was this weird alien, I'd found my tribe. I honestly can't adequately describe how that felt.

If I'm honest, I only paid for a private diagnosis because I do enjoy talking about autism ("my people!"), and trying to educate folk, but the "Oh, you're not really autistic then..." comments became so incredibly tiresome.

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Punxsutawney · 06/12/2022 11:10

I received a private diagnosis earlier this year, having never approached my GP with my concerns. Things suddenly clicked for me when Ds was diagnosed. I've had life long sensory and communication issues and really significant MH difficulties.
My first ever memory is being dragged into school full meltdown. How I wish there had been more awareness back then....

My assessment was a positive, but very thorough process. And I feel fortunate that we were able to afford to pay for it.
I asked the psychologist who diagnosed me if she would contact the GP with my report. She was happy to and the NHS have updated my records and added my diagnosis, with no issues.

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