New here and undiagnosed hoping for help

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I'm new here I am 28 and just looking for advice I believe I might have ASD but I have no idea when I was young it was brought up a few times but never really pushed or looked into more so there has never been any diagnosis. I don't know what is wrong I have just never fit socially I feel so out of place. I do my best to try and fit or act how people seem to want me to but I still come across as very awkward totally uncomfortable and a lot of times cold or uncaring being described as even unhuman before. I just cant seem to express myself right so I never really had friends. I have also for my whole life been so easily overstimulated by sound, smell, light and touch it is so overwhelming I tend to try staying form people and places a lot of time because of the making me further isolated. Then there's the obsessives tendency mainly having to do with color or numbers being how I perceive ordered right or when I get on a topic I like I cant stop and must know everything about it and can talk about anything else but then I often fall short on everything else because I'm so focused on just the one thing. This obsessiveness also makes me very routine bases as well and if the routine or other plan is broken I cant handles it so I end up just melting down I don't know why I just cant seem to control my own body and I have given myself scratches and bruises because I tend to hit or grab at my legs and arms when I lose it. I just don't know why I have never seemed to fit but I think everyone thought I might grow out of it but I never did. Now it just affect so much of my life and work can be so hard because I have to be social and it is the most unnatural thing in the world to me. So I just don't know if I should be looking at AS or ASD for I diagnoses or if I'm totally on the wrong trail and this is something totally different. If anyone has any opinions I would love to hear them I'm a little lost right now.

Hello, welcome to WrongPlanet.

I hope you will appreciate that it is difficult for us to judge you based on what you have written here, which is inevitably selective. However, based on what you have written I would suggest that autism is something that you might wish to explore further.

Where do you live? Do you see any benefits to formal diagnosis or would community diagnosis serve the same purpose?

It would be an idea to have an assessment. Here in the UK the waiting times can be quite long depending on where you live, and in my local area, I have heard firsthand how someone paid a lot of money out to go private, but then the local athorities do not accept a private diagnosis so they had to wait for the official NHS assessment. So if you live in rhe UK and want to speed things up by going private, check to see if your local area will accept private assessment results as otherwize it is money wasted. I can't afford it as it costs thousands.
In the USA, though nearly everyone has to pay for an assessment, there is a lot of competition which keeps prices lower then it would be in the UK, BUT one needs to do some research first to check the assessor is skilled with assessing for autism.
I did hear that certain colleges may assess for free and also certain health insurances may pay for assessments to be made. (And one also needs to save up the money if one does not have it so one can afford to be assessed etc. No doubt those who live in the USA can advize).
While in the USA the patients have to pay, the good thing is they don't normally have long to wait. I have heard that a few years ago the wait in my area was six years, but when I was put on the list the wait was said to be two years and reducing as more money had been ploughed into the system of assessing for autism as Wales (Part of the UK) had fallen well behind the rest of the country. Understandably they still have catching up to do, but they are doing extremely well considering the difficult challenges of having so many people on their list.
If you are in the UK, the sooner you are on the list to be assessed the better. At the moment with this virus situation going on everything is in chaos, but it won't harm to enquire.
Mind you, if you are outside the UK, is still a good idea to put yourself on the list.

The question to ask is "Why be assessed?. How would it help?"
For me it is simple. If I am assessed and am on the spectrum, my dentist will have the athority to send me to the specialist to be knocked out if work needs to be done. Without this, she has to do the work in the conventional way and I usually end up on the floor!
At hospital, they will listen to me and my needs rather then ploughing ahead on their pre-concieved ways. For example, hospital enviroment is difficult and I can easily get shutdowns due to the long corridors and even worse, the bleach and hospital smells which I am sensitive to.
And in other ways like in employment... If I get a job and find that due to anxiety build up or if the partial shutdowns start to become more frequent or worse still, I start slipping into shutdowns, I can explain to my employer, and get some time out, and also my doctor will be able to temporarily sign me off sick. Without this, I can easily go into burnout and need to quit my job. (Which has been the usual pattern of my life in the last 15 or so years).
So there are benefits. But likewize there can be situations where the social stigma (Why can people be so stupid to single out anyone who is different as a negative thing?) can be upsetting. I am at an age now where I don't care. I just need a little support, for the odd occasion where I could do with a little help or rest. I don't think I need a lot of help. Just an occasional help as described above. The help I need is more for an adjustment to be made so I can avoid sensory triggers in the circumstances that are likely to cause them.
Anyway. I have written quite a lot (Normal for me!) so I better let you read...

Welcome

I've not been here long and find it an interesting, informative and at times funny place

I live in the UK and recently obtained a private diagnosis. It cost £900 and this included some additional counselling as regards my employment rights and various sources or support that I could tap into if needed.

The advise on employment rights was very helpful as when I informed the executive board of my service the chair didn't react in a very supportive way.

£900 is a lot of money of course, however I didn't want to be hanging around for a long time to have some certainty over this.

Wow! You had a bargain there. My brothers ex girlfriend paid £6000 for her daughter to be assessed (Which they had to make a few trips which involved a lengthy train journey each way), and then the school (Who could not help her with extra support without an assessment) could not get the funding because the locol athority did not accept a diagnoses from a private assessent . So they had to wait another year for the nhs assessment so 6 years in all. She was 9 years old, intelligent but could not read or write. The first school had asked for them to take her to the doctor to ask for an assessment when she was three years old.


Things are much better today as the Welsh Assembly has woken up to the delays and a few years ago pushed more funding into the autism assessing and support, so waiting lists have come down to two to three years or even less (They are now assessing patients quicker then new patients are being put on the list so the list has reduced accordingly). Sadly with these lockdowns I don't know how things have been effected.
The assessment team are a great bunch of people and have been doing all they can to reduce the wait without compromising the quality of the assessments they do or the support work they do around it. They are heros!

Last edited by Mountain Goat on 28 Mar 2020, 4:16 pm, edited 1 time in total.

Well being as I paid £1200 for new brakes for my car I thought it a good price!

A children's assessment is significantly more. The clinical partnership that provides my assessment charged £3K+ for a child one.

For me a private assessment is out of the question as I only have a few pounds to my name at the moment.
But I am not complaining. Many people are heavily in debt, so I count my blessings.
£900... My car cost just a little over that. It is a great little car.
You spent a lot on brakes. I hope they work well.

But as far as assessments go, I think £900 is a bargain considering they have the potential due to lack of competition to charge more.

Here in Wales, when my brothers ex decided to go private, the only place they could go was our capitol city which is miles from here. There was no where closer.

Last edited by Mountain Goat on 28 Mar 2020, 4:26 pm, edited 1 time in total.

Thanks - so do I or the diagnosis wont be much use!

Haha.

I do find cars.. I noticed how every new car seemed to cost more and more to maintain? I mean... Well. They are getting more and more complicated so the parts cost more and more with more to go wrong... Some really good cars scrapped with minor issues as the parts cost more then the cars are worth.

Thank you all for the information and your stories. I was super afraid to talking to anyone about everthing going on but after this I was able to bring it up with my dr who is going to refer me so i will see where to go from here. Just being able to tell anyone has been such a relief. So thank you so much.

TessaNina, I relate to most of your post. However, I (along with the world) was in denial for many decades so I am just diagnosed now (late 40s). My experiences were so often invalidated; I never knew there was help for me; I just pushed hard (and suffered) through it all. Now I am finding I can be comfortable! I can use hi-fi ear plugs and polarized glasses (cuts down on meltdowns), and fidget toys and pressure points (cuts down on self harm). I'm learning to adjust my own expectations (have grace, not shame) and language to adjust others' expectations. I'm still intimated by friendships, but one can't do it all at once... so one step at a time.

Make sure to find an evaluator experienced with adult ASD women.

Welcome.

Welcome to Wrong Planet!

Unless a piece of paper gets you something good, I would't worry about formal evaluations. If people are charging large sums, they probably don't know what they are doing, so they have to do a lot, and then won't be able to help anyway.
AS only explains half my troubles, but reading a few lists suddenly made my life and family history make sense, and a couple of on-line tests were plenty of confirmation. Subsequent medical people have accepted my evaluation with no problem. I'm really surprised that nobody saw it before, but it just isn't on the checklists for the dysfunctional family people.
Most of the rest of my quirks arose from not bonding with my cold AS mother.