Effects and Impacts of Aspergers Diagnosis (or suspected diagnosis) In Adults

[darkshine]

I'm interested in how other people have felt about having aspergers/adult dx/feedback and help received etc.

How has it changed things/has it changed you?

Do you feel more or less able?

 

Have you had support?

How did your family react?

If you got an "official" dx - did you get any help/support?

Do you feel understood?

How was the experience for you?

If you don't have a dx - would you need support?

What difference would dx make to you or your life?

Has anyone else found as issue regarding AS and MH when dealing with professionals?

My main interest is in the kinds of support people have received, access to services/help/support, the reactions of professionals in psychological services, and how have you felt about all that?

In addition I'm interested in general feedback about adult dx and the experiences involved.

If people do not want to publicly say these things, feel free to PM me (this is easiest done by clicking reply to my post here - copying the text and pasting it into PM where you can then type in your answers between my questions if you so desire

 

 

In an ideal world I'd prefer people to answer as many/all of these questions - My own position is that there is not enough support for people throughout the diagnosis procedure or for people wishing to have a diagnosis to see if they have AS or not - and the answers to these questions would be a key interest in order to see how other people have felt about these issues and the experiences of the same.

 

Regards

 

Darkshine

[indiscreet]

How has it changed things/has it changed you?

I feel more relaxed. I've ceased blaming myself for being the way I am and sometimes now I'm actually happy.

 

Do you feel more or less able?

Much more able

 

Have you had support?

No, because I felt I didn't need it.

 

How did your family react?

I have no immediate living family. Of those friends I told those who knew me as a child were not surprised. In fact they recalled examples of my "problems" which I'd forgotten. However friends I made as a adult initially tended not to believe it because they associated autism with mental retardation.

 

If you got an "official" dx - did you get any help/support?

An immense amount from my GP. She put in a great deal of effort on my behalf and I'll always feel grateful to her.

 

Do you feel understood?

Yes

 

How was the experience for you?

A little uncomfortable because I had to stop "pretending" and be absolutely honest!

 

If you don't have a dx - would you need support?

n/a

 

What difference would dx make to you or your life?

n/a

 

Darkshine, I know these are brief answers but feel free to ask me to elaborate.

[Aeolienne]

How has it changed things / has it changed you?

I don't know how my life would have panned out if I'd not been diagnosed. At the time I felt a sense of relief that there was an official label for my condition, and I (naïvely as it turned out) hoped that at last people would take my problems with not fitting in seriously and not just fob me off with the same old same old "just join clubs and societies".

 

Do you feel more or less able?

Less able. I feel that I have achieved so little - both professionally and personally.

 

Have you had support?

Yes, but it's been a bit as and when. I've never had social skills training, and even the workplace support I had wasn't enough to stop me losing my then job, and then when I moved to another part of the country tapping into local support services seemed like panning for gold.

 

How did your family react?

Certain members of my extended familiy were inclined to say "Why does Aeolienne need a label? She seems perfectly normal."

 

If you got an "official" dx - did you get any help/support?

A shrink wrote my letter of referral to CLASS and encouraged me to attend an Asperger's support group.

 

Do you feel understood?

No

 

How was the experience for you?

As far as I can recall, the diagnosis was a pretty straightforward experience.

 

Has anyone else found an issue regarding AS and MH when dealing with professionals?

What counts as an issue? The only time I was seen by an occupational health advisor she said that she could see I had every reason to be depressed (what with my job being on the line and being lonely and all that) but nevertheless she couldn't diagnose me with depression because I didn't present a "barn door"(??) case. Prior to that my NT boss had been signed off sick for work-related stress.

[Adam Mars]

Do you feel more or less able?

Neither.

 

Have you had support?

No.

 

How did your family react?

My mother wanted to know if it was her fault. My twin brother got his own dx. My sister was very 'understanding' and overly sympathetic. My father ignored the news and carried on as usual. I prefer my father's reaction.

 

My girlfriend read everything and anything she could find on the subject, explored with me ways to overcome or circumvent some of my problems, helped me learn to communicate better and has become my wife.

 

If you got an "official" dx - did you get any help/support?

The local autism resource centre made me aware of a couple of social groups which weren't really suitable for me.

 

Do you feel understood?

Contrary to cliche, my wife does understand me.

 

How was the experience for you?

Reassuring.

 

Has anyone else found as issue regarding AS and MH when dealing with professionals?

Mental health professionals have tended to think I'm an autism problem and pass me on to autism services (such as they are). Autism services recognise that my real problem is depression and pass me back to mental health services. And round and round we go.

[atlantis]

How has it changed things/has it changed you?

It's had a fairly bad impact on my self-esteem. I notice things I do wrong in social situations much more than I used to. Other people think I've changed- I'm trying to act more myself now so they're noticing the difference (they generally think I'm only pretending to have AS and am trying to act accordingly).

 

Do you feel more or less able?

Less able- I feel quite useless!

 

Have you had support?

Not yet, which is bad. I got my dx 3 months ago, and since I got it I've had nothing. But I'm supposed to be meeting the specialist soon to discuss my dx report 'in plain language', so maybe something will come from that.

 

How did your family react?

My Mom has been really good. My grandparents don't really understand but have been really supportive. The rest of my family have made it quite clear that they don't care and seem to think I'm just attention-seeking. They don't believe I have AS and don't want to even try to understand. Mostly they ignore me now, or sometimes act with hostility towards me.

 

If you got an "official" dx - did you get any help/support?

Like I said, not yet. I'm holding out hope though.

 

Do you feel understood?

Not at all.

 

How was the experience for you?

Surreal and disheartening, mostly. Although if I get the support I need (...eventually...) and can overcome the self-esteem issues it's brought up I think it might turn into a positive experience overall.

 

If you don't have a dx - would you need support?

n/a

 

What difference would dx make to you or your life?

n/a

 

 

 

_atLantis_

[darkshine]

I figure its only fair that I should answer as well - thanks to those who have replied so far - it's quite interesting how people have different experiences and similar ones too!

 

How has it changed things/has it changed you?

It has changed my entire world and at the same time changed nothing (quite a weird experience that)

 

Do you feel more or less able?

More in some ways cuz I know what I'm dealing with (when not in denial) and less because I'm worried about how people will treat me if they know and I feel defective in some ways

 

Have you had support?

Very little - my carer has tried to help but doesn't really understand

 

How did your family react?

Complete denial from parents and haven't told anyone else in my family

 

If you got an "official" dx - did you get any help/support?

I've spoken to the guy who dx'd me a couple of times but this has been about medication and not AS - they've mainly tried to divert me to AS groups that are not appropriate at this time

 

Do you feel understood?

No

 

How was the experience for you?

Very disturbing, lonely, confusing, overwhelming and upsetting

 

If you don't have a dx - would you need support?

N/A

 

What difference would dx make to you or your life?

N/A But despite a lot of literature saying relief is common I do not feel relieved

 

Has anyone else found as issue regarding AS and MH when dealing with professionals?

I obviously have I just keep going round and round with them (well they keep going round and round with me actually) they can't make up their minds what to do I think... I want to improve my social skills and various other things and there really doesn't seem to be much available for adults from what I can tell.

To Aeolienne - I guess an issue with professionals and AS/MH is anything you feel that was unsatisfactory (or it could have been great) maybe things that are/aren't available (services or whatever) maybe an unclear line between AS and MH so you don't know which you are dealing with, maybe the people don't do their jobs well or maybe they were brilliant... I listed my issues with the MH services once and ended up writing 5000 words about it and I gave up when I still had so much more to say (but then I do tend to ramble on despite my best efforts not to)

Best

Darkshine

[lilnicki]

How has it changed things/has it changed you?

I came out of the consultation feeling it was the start of something at last, but this quickly wore off when i realised i was still me and stuck behind a pane of glass.

 

Do you feel more or less able?

Now.....neither.

 

Have you had support?

Fom my partner=yes.......from my family= only my Mum knows at the moment........she was in denial at first, but is coming round now she's read up a bit more.

 

How did your family react?

See above.

 

If you got an "official" dx - did you get any help/support?

He told me to look on the NAS for any local groups i could join......that's about it.

 

Do you feel understood?

I feel he understood completely.......my partner=moderately.......my Mum= slightly......one work colleague is now looking to speak to his GP.

 

How was the experience for you?

I was refused a diagnosis at first......they wrote a letter to say "we cannot help you at this time"....my GP was furious, and wrote asking "why the h*ll not?!".......i had to wait 6 months which felt like forever.

 

If you don't have a dx - would you need support?

N/A

 

What difference would dx make to you or your life?

N/A

 

Has anyone else found as issue regarding AS and MH when dealing with professionals?

I think their innitial dissinterest was due to financial reasons and the NHS....the man who assessed me was kind, caring, and put me at ease......i really couldn't talk at all for the first 5 minutes i was shaking so much.

[Fourthdimension]

Hi

 

Although i have started the process of getting a diagnosis i have came to the point where i am not sure wether to continue or just to be content with been me.

 

How has it changed me and things around me?

 

Well, I suppose although i dont want to admit this it has changed me more than i would have liked. I find that upon finding out about aspergers the first thing i did was blame it for been the misery of my life but then i started to appriciate it more and realised that without having this i would not have survived or coped through the experience i have been faced with.

 

I apriciate myself more and rather than feeling weird i just realise that i am different and so it takes that whole feeling of weirdness away although i still do feel like an alien living in a human world but i realise why i feel like this an it makes me feel a whole lot better.

 

Knowing the cause of my abnormal behaviour puts my mind at ease

 

I have nt read the rest of your questions am going through them one by one so am not sure wether you mean how it has effect people around you but i ll mention this at the end.

 

Do you feel more or less able and have you had support?

 

I feel more able and i have not had support and i dont really want any either however i would like to satisfy my curiosity and get a full on diagnosis but am not sure if its a good idea or if it would make a difference to me and if it did would that difference be for the worst or best

 

How did my family and friends act and do i feel understood?

 

My family and friends dont really notice this and the friends that i have told about this that dont know me very well disbelieve me as they cant see past my barriers or defense mechs but the friends who i let have a peek at how i think and my thought patterns can easily see the symtpoms and believe me but i dont think they see me as different

 

I see myself as different in terms as more able for instance i know i cant stop talking about my experiences in a convo or that i ask more questions than normal peopple but in class i have learned just to write these questions down because its difficult for the teacher to answer them in class and i find that by knowing i talk alot about myself i can be aware of this and aim to talk less about myself

 

so what am saying is i can keep check on myself and try to make a balance

 

What is Dx?

 

How was the experience for you?

 

Depends which experience you mean but in all experiences i have been outcasted but the more i learn about me the more i feel i am accepted and this is happening in college more people are starting to accept me rather than scowl at me

I guess i could say i would nt have had any trouble if i was born without this but then i would be wrong cause i would probally still have trouble and if it was nt for having this would i have got through my experience and coped or not? and i dont think i would of so i am appriciative that i have a gift as such

 

i find realtionships hard though and sometimes i just wish i could give everything up just to snuggle up with a woman and be with her forever but then i gotta think hmmm is this really what i was made for "to cuddle" or can i do better and make a whole new life for myself

 

Has anyone else found as issue regarding AS and MH when dealing with professionals?

 

The concillor was ok but the doctor was an arrogant, overpaid, stereotypical judgemental idiot with half a brain and an egocentric god complex

 

he did nt like me at all haha

 

take care

[Minime72]

If you don't have a dx - would you need support?

 

Perhaps, mainly with relationships

 

 

What difference would dx make to you or your life?

 

An IDENTITY. Always knowing somethings not quite right, never fitting any label theyve given me. Offering support to others, understanding why I do things the way I do.

 

 

Has anyone else found as issue regarding AS and MH when dealing with professionals?

 

1st psychaitrist knew nothing about AS (she said as much) despite referral clearly stating I was seeking Dx. She actually said she didnt see the point as theres no services anyway. I pushed it and she referred me to PDD team who took 3 months to write to me declining referral. Has appt with 2nd psychiatrist who knew a lot more, I felt listened to, I also handed him some info on adult females with AS and hes sending me to a specialist for Dx

 

 

I actually got told by a clinical psychologist in 1998 he believed I was AS. I saw this chap for 6 years but current professionals say his Dx isnt valid.

 

 

To get a Dx the psychiatrist is referring to a private specialist therefore theres no NHS service for adult Dx They are reluctant to diagnose because it will become a need and therefore they will have to provide services so NHS wont diagnose in my area (thats my theory) I also feel that other people who arent as forward will get palmed off.

[indiscreet]

To get a Dx the psychiatrist is referring to a private specialist therefore theres no NHS service for adult Dx They are reluctant to diagnose because it will become a need and therefore they will have to provide services so NHS wont diagnose in my area (thats my theory) I also feel that other people who arent as forward will get palmed off.

 

My GP confirmed this when I first asked for a referral. She told me that because of lack of resources the Health Authority in my area were not carrying out diagnoses for adult autism, since all the money available was being allocated to the needs of young people with autism. After a struggle she managed to get me a referral but I wonder whether it helped that I made it clear that if I received a positive dx I would be satisfied and would not want or need any further support - particularly not financial.

[darkshine]

What is Dx?

A nice lazy way of saying diagnosis (or dx'd - diagnosed) just yet another short-cut for words - and no, it doesn't make sense to me but I've seen other's in "real life" use it as well so maybe it's from a short-hand convention - cba to find out (cba is can't be ar5ed)

[Fourthdimension]

A nice lazy way of saying diagnosis (or dx'd - diagnosed) just yet another short-cut for words - and no, it doesn't make sense to me but I've seen other's in "real life" use it as well so maybe it's from a short-hand convention - cba to find out (cba is can't be ar5ed)

Haha lol I though Dx was diagnosis haha and i know cba is cant be a$$ed haha lol ) just like LOL stands for licking olives and leopards my mam told me that

 

Joking lmao i know lol is laughing out loud haha x x

[darkshine]

Shame I so thought it was licking olives and leopards too sounds funnier though dunnit (personally I prefer lmao but there we go - doesn't apply very often so don't use it)

[indiscreet]

Joking lmao i know lol is laughing out loud haha x x

 

Or "lots of love".

[Fourthdimension]

Indiscreet - haha "lots of love" do ppl use the abbrv in that way because i think your right and they do

 

Darkshine - I use lmao/lol but as you have noticed in in over use them a lot haha < just like that. Even when somethings not funny i think i use them to reduce tension or create a mellow mood because its hard to interpret someones feelings when over the comp or as i have found out with another use its very hard to decipher there intent to wether they are been nice or nasty so instead i just write lol all the time then people will know am trying to be lighthearted haha ) x

 

What you both been up to indiscreet and Darkshine

[Adam Mars]

A nice lazy way of saying diagnosis (or dx'd - diagnosed) just yet another short-cut for words - and no, it doesn't make sense to me but I've seen other's in "real life" use it as well so maybe it's from a short-hand convention - cba to find out (cba is can't be ar5ed)

 

Dx - along with Sx (symptoms) and Tx (treatment) - derives from the traditional Rx (prescription or 'recipe')

 

http://www.straightdope.com/columns/read/1641/what-does-the-pharmacists-symbol-rx-mean

 

Tx and Rx are also used as shorthand for 'transmission/transmit' and 'reception/receive' in radio communication.

Edited October 11, 2011 by Adam Mars