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

Pyxis

Pastures, is there any way at all you could afford a private assessment? Or at the very least, a private consultation to get them all rolling?

No idea what it would cost, though.

However, if it got you through the process more quickly, it might be worth it, if it saves you months of angst?

How about the Asperger's Society? You could email them, and they might have volunteers who could help and/or mentor you.

http://www.aspergerssociety.org/aspergers-syndrome-symptoms-in-adults-overcoming-the-top-4-challenges-aspergers-adults-face/

There's an email contact form at the bottom of this page. ^^^^

Pyxis

This site gives this info.......
https://www.different-together.co.uk/diagnosis


"The Private Route to Diagnosis
The private route often involves the person referring themselves to the diagnostic service. The cost of an assessment range from approximately £200 to over £1,000. The National Autistic Society has details of professionals all over the UK who have autism expertise."


......... a very wide range of pricing! But might be worth investigating further.

PasturesNew

Pyxis wrote: »

...

One of the problems is that without a diagnosis, you're not actually "taken seriously" even by the Society .... until you have a formal diagnosis you're a fantasist. I phoned the Society yesterday, to find out the process etc .... and all they will do is tell you that you need a diagnosis .... until you have a diagnosis you're not allowed "in" to get any help etc at all. You're just told to "read the website" - which essentially tells you to get a diagnosis

The Society is for two sets of people:
- those with a diagnosis.
- to tell those without one that they need to get a diagnosis.

There's even a social group about 8-12 miles away that have meetings and even a summer BBQ. It's not open to people without a formal diagnosis.

It's annoying. If you were in the pub and the man next to you had plaster on both full legs and was struggling to stand with his two crutches and asked for your chair ... would you demand to see his X rays before you let him have it?

The only way to "see" it is to have the formal diagnosis.... without that you're not believed.

PasturesNew

Pyxis wrote: »

...

One of the problems is decision-making and choosing - and how do you choose from many options ..... and yes, it is a LOT of money. I'd rather save the money and wait in line

A diagnosis is assured .... but you won't believe that without a formal diagnosis of course

ukmaggie45

Just sending some cyber hugs to you dear PN. And Vibes and hopes that things go ahead for you in a timely manner.

Pyxis

Pastures, I know you don't like PMs, but I have messaged you a couple of places very local to you..... they should be able to give you some advice.

SingleSue

PasturesNew wrote: »

One of the problems

That was the biggest frustration when the boys were young and it was the reason why I went off on my own and did my own therapies. Joe had an awkward "autistic like behaviour" label initially as the psychologist said he didn't like to label a child. Having that non defined, non formal diagnosis meant that Joe was unable to access the specialist speech therapy he needed whilst also being outside of the scope of normal speech therapy, so was left with no speech therapy at all!

It also meant that he couldn't access all the other early intervention services for autistic children, couldn't get the specialised support at playgroup/school, family support via portage and as you found, we didn't fit the criteria for the support groups.

By the time he got his formal diagnosis (at almost age 6 after being red flagged as a probable autist before he was 2), it was too late for all the early groups and help and it was pretty much "Here is the diagnosis, now get on with it" as he was school age and too old for the early intervention therapies.

I have nothing to do with the autistic society or any related groups because of the early attitude and because I tried, just the once, to go to a local group just after formal diagnosis and was made to feel a fraud by some of the other parents there because Joe doesn't have classical autism (he has complex autism) and presented differently to their children.

ivyleaf

Well done Joe :T

And PN Sending you non-tactile cyberhugs. Huge kudos for taking the first steps :T

Pyxis

PasturesNew wrote: »

Correct. They "startle" me ... and then there's a gut-gnawing several hours where I feel an overwhelming obligation to reply to them - and to do it in a way that doesn't come across as rude/unappreciative.

The ones I dislike the most are from random bods .... I'm sure you must all get them ....

"Hello, you said (in a post in 2008) that you .... and I wanted to know if .... ".

NO!!!

I hope the reason for me sending you one was ok, though? Didn't want to compromise your anonymity, etc.
Plus I reckoned the in-thread warning would defray the shock!

vivatifosi

You aren't wasting a GP's time if you are getting a diagnosis that will help you for the rest of your life. Even if that leads to a referral.

Going to the GP when you have a cold and could see a pharmacist and get some paracetamol... that's a waste of GP time.

Yes it is a PITA, but the main thing is that you are a step further down the line once you've seen the doc.

I'm glad you are finally getting the help that were you twenty years younger, you would have received in childhood. It's about time that you got the support you need and are entitled to.

You shouldn't be having your life mangled because the system hasn't picked up on your needs... yet. I'm not going to send hugs, but will send positive thoughts that you finally get a good outcome.