The Nice People Thread, No.16: A Universe of Niceness.

PasturesNew

GDB2222 wrote: »

I don't know how crucial a diagnosis is

It's complex why it's important, multi-faceted.

A large part of it is "validation" and proof.

I can say anything, but if I can't say I've been diagnosed, then I can be dismissed as a fantasist. Especially now "everybody seems to have it". Those who "don't believe it exists" will tell you to your face, then ask if you've been diagnosed or are simply seeking attention.

Also, validation when accessing any groups, or services, that cater for the community. There's a pecking order isn't there Yes/diagnosed; Being diagnosed; Self-diagnosed/think I've got that.

When you're "completely alone", it's very isolating in itself. With ASD you don't "fit in" with society/community or anything at all. So, a piece of paper saying "yes" helps with feelings of worthlessness and empowers you to stare non-believers in the eye and state positively "YES".

A formal diagnosis is also a foundation for lack of confidence as you're not a fantasist who can be mocked, dismissed, or ignored because you can wave a bit of paper if anybody asks - and people do. Mean people do/would, because it's part of their empowerment to bully anybody. It makes you feel included instead of excluded.

SingleSue

GDB2222 wrote: »

I don't know how crucial a diagnosis is, unless it provides access to benefits such as PIP and perhaps some therapy?

A diagnosis might provide some insight into why you feel like you do and how other similar people have developed strategies to cope. But you can easily research all that without a formal diagnosis. In fact, I assume you already have!

A formal diagnosis can actually help, it won't change the outcome in most cases but it can help someone to move on, to finally have a reason why they are like what they are like.

When the boys were young I kept being told by one specialist that they didn't like to label a child and having a formal diagnosis or not made no difference as any assistance should be on need rather than a label. Unfortunately, much in our society relies on someone having a label to actually access that help in the first place and this was most certainly the case with youngest son. He had a informal diagnosis of autistic like behaviour due to this specialist but because it said autistic like he couldn't access specialist speech therapy, early intervention therapies and so on and so forth because his 'label' was not a formal one. At playgroup/school he was treated as a naughty child rather than one struggling due to his autism and sensory issues, we also couldn't access specialist respite which could have given me a chance to have quality time with James and would have given him a semblance of a normal pre teen childhood.

Joe was completely non verbal, mainstream speech therapy was not suitable (in fact they wouldn't touch him because he required specialist speech therapy), so he fell through the cracks with no-one able to offer him help as he didn't meet criteria for either. It fell to me to go online (on a dial up connection, nightmare!) and research the different methods of speech therapy and early interventions for Autism, learn what to do and then put it into place.

So yes, although I understand people are wary of putting labels on people, a lot of the time it is essential to receive the help needed...and it can give peace of mind too.

PasturesNew

I think, too, formally having a label helps you to sort out in your head "what's you; what's IT".

I do many things that all of you could say "Oh, I do that".
If I do 1000 odd things and there are 1000 of you and each of you says to one thing "Oh, I do that", then it's difficult to know where I stop/start and where "IT" is.

I want to know who I am. Which bits are "me" and which bits are controlled by "IT". Because then things might make more sense and there's a chance I can identify bits and pieces and learn adjustments that work for me.

I'm sure many people "don't like cooking", but how much of that is me, how much of that is because I live alone and how much of that is "IT". You can't do that without a starting label, else I might be barking up the wrong "oddness" tree when trying to understand it. I know Asperger's is my "IT"... but do I additionally have the Language Disorder, or is it all purely Aspergers? I think I do, so I can spend the rest of my life "wondering" if I've self-diagnosed correctly, or get a pro to nail it.

Many people don't like going into pubs, again, is that my preference or because of the sensory overload/confusion and not knowing what to expect.

I guess, as the condition means that "nobody understands me", me trying to explain it isn't helping much

SingleSue

I understood it perfectly....but then I have been through the process with the boys.

Doozergirl

PasturesNew wrote: »

I think, too, formally having a label helps you to sort out in your head "what's you; what's IT".

I do many things that all of you could say "Oh, I do that".
If I do 1000 odd things and there are 1000 of you and each of you says to one thing "Oh, I do that", then it's difficult to know where I stop/start and where "IT" is.

I want to know who I am. Which bits are "me" and which bits are controlled by "IT". Because then things might make more sense and there's a chance I can identify bits and pieces and learn adjustments that work for me.

I'm sure many people "don't like cooking", but how much of that is me, how much of that is because I live alone and how much of that is "IT". You can't do that without a starting label, else I might be barking up the wrong "oddness" tree when trying to understand it. I know Asperger's is my "IT"... but do I additionally have the Language Disorder, or is it all purely Aspergers? I think I do, so I can spend the rest of my life "wondering" if I've self-diagnosed correctly, or get a pro to nail it.

Many people don't like going into pubs, again, is that my preference or because of the sensory overload/confusion and not knowing what to expect.

I guess, as the condition means that "nobody understands me", me trying to explain it isn't helping much

The simple answer to that is that if you wouldn't actively choose it, it isn't "you".

That goes for all of us. No one's personality and quirks fit into a neatly labelled box.

PasturesNew

Doozergirl wrote: »

The simple answer to that is that if you wouldn't actively choose it, it isn't "you".

That goes for all of us. No one's personality and quirks fit into a neatly labelled box.

But, given the choice, I don't want to be "me"; I'm perfectly happy with the "normal bits", it's the meltdowns and anxiety and distress and PTSD I'd bin. Those spoil everything.

A me without "IT" would be better.... because I'd not have to always be running away from everything. I'd have got on at school, got on at work, made friends.

An epileptic or somebody with tourettes is "better" if that bit of them could be taken away and wouldn't change them as such ... except they'd not have the worry of "what if" hanging over everything and having to step back and avoid situations etc. And no explaining etc.

GDB2222

I was half-listening to Desert Island Discs this morning. Sue Biggs was on, Director General of the Royal Horticultural Society. She struck me as extremely articulate, very clever, and very accomplished.

Given all this, what she said near the end of the broadcast is very, very sobering, and very, very sad. Here's a link:
https://www.bbc.co.uk/sounds/play/m0006l62

It's just over half a minute, starting at 31:00.

Doozergirl

PasturesNew wrote: »

But, given the choice, I don't want to be "me"; I'm perfectly happy with the "normal bits", it's the meltdowns and anxiety and distress and PTSD I'd bin. Those spoil everything.

You can take whatever you don't like and stick a label on it.

"me" is what is left when you take all the stuff you wouldn't choose to be "you" away.

That's You. You is not all of those behaviours and thoughts. You is actually perfect, the rest is something else; but even with the something else, you're still perfect.

We all have something else.

ivyleaf

Thanks for the link GDB. I'll have to listen to it later though.

How are you doing?

GDB2222

ivyleaf wrote: »

Thanks for the link GDB. I'll have to listen to it later though.

How are you doing?

It's about this very capable lady. At the age of 19, she was told by her then boyfriend that she could not dance. She hasn't danced since then. It's crazy what we allow other people to do to us!

I'm okay. Thanks. The op has gone very well. I'm booked in for the next procedure in 10 days. That has about a 50/50 chance of working, but it's fairly free of side effects. If that doesn't work, I'll have to have another operation that is pretty much guaranteed to work, but also pretty much guaranteed to have unpleasant side effects. So, I'm hoping the first one works, as you can imagine! It's all very modern, with an interventional radiologist. I don't think that speciality even existed a few years ago.