Did it make a difference to you getting a diagnosis

[Autumnsoon]

My assessment wasn’t supposed to be untill dec.
but it’s been booked for September,
I had dec in my head ,i was prepared for dec ,but September is soon.

I’ve managed this long ,without it .
im going to get the blame for the kids having autism ,if I get a diagnosis.

I don’t actually want a diagnosis,I just want to know if I have it or not .I’m pretty sure I do ..im quite fucked in the head ..but that’s from not knowing what was wrong all these years and trying and failing to fit in .im .not saying people with autism are fucked in the head ,,not at all ,just saying I am, because of trying to navigate life and always getting it wrong .

I do want a diagnosis if I have it ,but im worried what happens to that information..so when im old in a rest home will all the staff know ,will it be on hospitals notes if im in for other stuff ,will it be on all my medical information

I’ve got POA for a relative,and you wouldn’t believe the amount of personal information I’ve ended up with from hospitals and the past ..stuff im sure I shouldn’t of been sent ,but was ..I’ve not read it ,but even just glancing down at what arrived in the post ,I’ve seen stuff I shouldn’t know .
im rambling..
I do ramble on email and what’s app,but this appointment is on zoom ,with camera on ..I go silent when im having to talk ,and I didn’t get my counselling through talking space because I couldn’t have my camera on ..
it all feels very real and scary

It wasn’t like my whole life immediately changed after diagnosis but it did help in the long-term. Having a word helped me understand why I am different and helps other people understand too. I don’t actually know what the procedure is for hospitals and stuff: I always proactively tell them I’m autistic but maybe they would have asked anyway.

I found a private practitioner, who conducted a full assessment to NICE standards, but paused the process there, and let me decide whether I wanted them to proceed to officially give a diagnosis or not.

I have a sense of resolution.

Please try not to worry. I was diagnosed recently in my late 40s and I'm i a registered healthcare professional. I don't even have to mention it to my employer if I don't want to. I have, though, because I'm happy to be supported where needed, and to give lived experience input as well. But I'd also be within my rights to say nothing if it I'd did not impact my job. Might be worth discussing with your union.

My diagnosed of autism and ADHD were really validating for me. I'm not just shit at life, I'm differently wired. I now have reasonable adjustments which make my working life less stressful, and I've given myself a pass to say no to things I don't want to do.

As for it being your fault that your child is autistic, ignore that bollocks. It's not like you chose this!

I know deep down I’ve got it ,whatever the assessors say
I knew when my youngest was diagnosed,he had exactly the same problems as me at school ,and it was school who picked up on the fact he was autistic,school pushed for the diagnosis,I was oblivious as my eldest with autism was completely different from the youngest…so back then I thought everyone with autism was like my eldest son …he’s in his mid 20s now .
I am worried my children will see me differently,and the two with autism will think I gave it them ..
but I thought it was only passed down through the male line ,I thought only males could pass it on …

Nah, Nd can come from either side. I've 4 adult kids who are Nd, they don't hold it against me. It just is.

I have ADHD, so apologies if this comes across as rude/insensitive in any way.

My experience has been life changing due to the meds, but far worse when it's come to receiving medical care since my diagnosis. Drs outside of psychiatry I've found have some sort of stigma towards us.

If there was support/treatment for autism I'd say go ahead,but as there isn't I feel you're very justified in being cautious.

If it's a financially viable option maybe a private diagnosis that isn't forwarded to your drs could br an option x

For me...the primary difference after diagnosis was that the "...but you're not really autistic" crowd shut up pretty quickly.

I already knew I was autistic, mainly because I'd spent a lot of time in the previous couple of years talking to autistic people and comparing experiences - there was just far too much in common (that was otherwise uncommon in the population) for it to be a coincidence.

As a result, and with an incredibly supportive other half, I already had enough coping mechanisms and support structures built into my world that I didn't need anything more than confirmation, and even then it was a nice-to-have more than anything in the short term.

I'm fully aware that I'm very lucky in that regard.

My main concern is preparing for being older; as I age (mid-40s now), I'm getting less and less able to mask consistently, and there's also very little known about autism and how it affects the 70+ bracket, particularly when it comes to dementia and other age-related illnesses. Having a diagnosis on my record seems like a good idea from that perspective, even if it's just so that I become a useful part of the statistics for future studies.

Oh yeah I’d forgot about that. People actually believe you once you have the diagnosis.

Well, some do. There's still the "There needs to be another word for you people, because you're not as autistic as my son/daughter" folk, but there's really not much conversation to be had there either because they'll never change their minds.

Yep, your first post sounds about right for how I felt. Schrödinger's autism...what if, what if I am just shit human being? Etc etc.

Can't read further just yet...will come back later.

yes that’s at the bottom of all this .what if I am just shit at being human .
what if I can’t talk to the assessors .which are both male ..how I can I tell them my issues with sex ,periods,hygiene,relationships…those are a huge part of me .
I won’t be able to say any of that to two men I’ve never met before yet I have to tell personal things to ,for them to decide if they will give me a label to validate what I’m sure I already have
most people do not like me ,that’s ok ,I’m used to it ,I assume people won’t like me so I don’t get disappointed when it becomes clear they don’t.
these assessors wouldn’t like me either ,I won’t be able to get across how much autism has effected my life ,and no diagnosis,no validation,just left with the fact I’m shit at being a human..

Be honest with them before the assessment - email them and tell them about your concerns. They may be able to switch out for female assessors, or (more likely) put your mind at ease over it.

Can I ask - what difference does a diagnosis make? OH says I am on the spectrum (he has been diagnosed) but then seems to say (because he has a "qualification") that about 99% of the people we meet (whether friends, healthcare professionals, shop workers etc) are also on the spectrum. He takes medication which I cannot see make any difference to his behaviour whatsoever (he says he feels "clearer" but to me and DS is still angry, shouty, contradictory, entitled, oblivious to anyone's feelings/needs than their own and lots more) . Someone asked me if it would make a difference to me if diagnosed and I said no. I am who I am. I don't need/want any medication. OH changed as soon as they got their diagnosis and uses the I am disabled rhetoric to explain their poor behaviour when prior to diagnosis they would not have behaved in the same way. He lost a lot of friends because his behaviour changed for the worse.

Apologies but I would think carefully over what you expect/need from a formal diagnosis. Yes, it can explain behaviour and provide closure; medication CAN help when the right meds and dose are arrived at; and also things like PIP and blue badges can practically help with every day situations. Therapy can help too with navigating stressful situations but only you can determine what is best for you as everyone is different. That's why people are now classed as being on the ASD spectrum as the ND experience is so different and varied.

You are not shit! @Autumnsoon Don't forget some people will take advantage of your weakness; male or female. It's a trait of the animal kingdom that a weakness is exploited. And it's not weakness but a sensitivity and you know what, autism doesn't make you crap; other people do that to you and make you doubt yourself because you behave or respond a little differently. But that's their rubbish and not yours.

It has helped in a couple of practical ways but overall a diagnosis has not had a dramatic effect