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lambey
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19 Aug 2012, 11:32 am

Hi there, i'm self-diagnosed with Asperger's Syndrome living in the UK. As of late i've been wondering about getting an official diagnosis. Back in may i first found out about AS, started doing a lot of research and came to the conclusion i probably had it, as i can really understand a lot of things that i've read as almost being about my life. I consulted with a person i used to know (and fell out with last year) who knows her stuff in psychology, and she recommended not getting diagnosed as it can lead to numerous restrictions in later life. Since then i've been on these forums and talking to some other acquaintances about it, who think that i should go and get tested. Meanwhile, i tried to discuss this topic with my mom. Whenever i mention AS around her, she simply stops talking and says "you have don't Asperger's, your just unsociable" - ignoring all other possible symptoms. I don't like having to make phone calls to places - least of all to my GP. I don't like going to places i don't know, which makes going for a test is a pain in the ass.

Now for the real question. Do people believe that going for a diagnosis is actually beneficial? i mean, i can already tell people what i believe to be wrong with me, its not on an official record, and it saves me a lot of time.



whirlingmind
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19 Aug 2012, 12:07 pm

The benefits as I understand them are:

any employer in law must make 'reasonable adjustments' as AS is classed as a disability;
you are entitled to NHS support for people with AS should you need it;
it can be beneficial on the housing front (e.g. eligibility for council housing/housing association housing) as it's a disability;
you could possibly be eligible for disability living allowance if it affects you sufficiently;
in any dealings with the police or other official bodies they would need to take account of you being on the spectrum;
if you have children with it you are more likely to be believed due to the genetic link and get them assessed without a fight.

Negatives as I understand them;

you have a label, people might judge you (however you don't have to tell people);
in light of the poor guy being refused a heart transplant as he's on the spectrum, one has to wonder whether rights to particular medical treatment might be affected;
you might have children with it and this makes parenting more challenging.


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YellowBanana
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19 Aug 2012, 12:16 pm

It depends what you want from a diagnosis. You have given three reasons why you don't want to be diagnosed but none for why you want to. Seems like you've already convinced yourself that you would be better off without a diagnosis ...

Personally, in the UK where being assessed for an ASD can be done at no cost to the individual within the slow processes that is the NHS I see no reason not to get a diagnosis. In the US there is a significant cost to the individual to get an assessment so I can understand why people go with the self-diagnosis option especially if they have no immediate need for services/support. But in the UK? Just go through the slow process and find out for sure.

Remember though that to be diagnosed you must have "clinically significant impairments in social, occupational, or other important areas of functioning". So if you don't have a significant impairment you won't be diagnosed even if you have traits.


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lambey
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19 Aug 2012, 12:24 pm

YellowBanana wrote:
It depends what you want from a diagnosis. You have given three reasons why you don't want to be diagnosed but none for why you want to. Seems like you've already convinced yourself that you would be better off without a diagnosis ...

Personally, in the UK where being assessed for an ASD can be done at no cost to the individual within the slow processes that is the NHS I see no reason not to get a diagnosis. In the US there is a significant cost to the individual to get an assessment so I can understand why people go with the self-diagnosis option especially if they have no immediate need for services/support. But in the UK? Just go through the slow process and find out for sure.

Remember though that to be diagnosed you must have "clinically significant impairments in social, occupational, or other important areas of functioning". So if you don't have a significant impairment you won't be diagnosed even if you have traits.


any chance you can define "clinically significant" for me? because i can carry a conversation in some sense, even though a lot of what i say is irrelevant to the topic and i tend to move the conversation into a topic i like or enjoy, i get anxious around people i don't know more than anything else but i'm starting to learn how to push past that, i can function in life - even if it is with some difficulty. My hearing i damaged purposely so it doesn't bother me as much, Eyesight is a little damaged from spending almost all day every day for 10+ years in front of a computer when im not at school or college, etc.

edit: the only thing that is massively impairing is that i don't like going to places i don't know and i get very anxious with new people. the first is kinda negated by me turning up to get tested isn't it? :P



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19 Aug 2012, 12:49 pm

Significant enough to affect your life, could include for instance:

despite intelligence levels you underperform at school or in your career meaning your fulfillment of life is affected;
your socialising issues mean you avoid things that any normal person doesn't and this affects your enjoyment of life
you are or have been caused anxiety or depression because of the issues you have with the condition

I would say any of these would qualify, you don't have to show that you are locking yourself in a cupboard and not seeing a soul.


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Bubbles137
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19 Aug 2012, 2:07 pm

I'm in a similar position- not sure if I should get an official diagnosis or not. As I've said on other threads, the idea of AS was brought up by a psychologist I was already seeing and she did an unofficial assessment but I didn't follow up with the diagnosis. Last year, I had to withdraw from a teacher training course due to a lot of difficulties which a woman whose kids I babysit (who's also a psychologist) said might be related to AS and it would be worth looking into getting a diagnosis so that if I applied for teacher training again, I could get more support with it. I'm now seriously considering applying for teaching again so have no idea what to do...



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19 Aug 2012, 2:12 pm

Inability to sustain friendships and romantic relationships would also count as significant impairment, even if you have some success.

I think the main reasons for me to get diagnosed were getting some help in the form of therapy and confirmation of my self-diagnosis. Knowing that my difficulties have a name helps me to accept myself greatly.


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Bubbles137
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19 Aug 2012, 2:33 pm

OJani wrote:
Inability to sustain friendships and romantic relationships would also count as significant impairment, even if you have some success.


Not sure if I have that or not... I often lose friends by trying too hard and annoying them without realizing it, but I do have one close friend who I've known since we were 9. I tend to 'latch on' to people who don't necessarily want to be friends, then they get fed up with me. Have never had a romantic relationship or even been close (although I did go out with someone for three months without realizing he thought we were going out). Careerwise, I had a lot of difficulties with teacher training, and have never managed to keep a job without annoying the boss for 'not taking initiative' even though I was trying to do what I thought I was meant to. I also developed an eating disorder as a way of coping with social pressure and dealing with obsessions.



lambey
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19 Aug 2012, 2:46 pm

OJani wrote:
Inability to sustain friendships and romantic relationships would also count as significant impairment, even if you have some success.

I think the main reasons for me to get diagnosed were getting some help in the form of therapy and confirmation of my self-diagnosis. Knowing that my difficulties have a name helps me to accept myself greatly.


yeah generally speaking i can make a few friends but often fall out with them. ive never been able to have a romantic relationship, despite wanting one badly.



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19 Aug 2012, 2:49 pm

whirlingmind wrote:
you are entitled to NHS support for people with AS should you need it


That's assuming the NHS will fund the diagnostic process in the first place. Some primary care trusts won't fund the process for adults.



OJani
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19 Aug 2012, 2:55 pm

Bubbles137 wrote:
OJani wrote:
Inability to sustain friendships and romantic relationships would also count as significant impairment, even if you have some success.


Not sure if I have that or not... I often lose friends by trying too hard and annoying them without realizing it, but I do have one close friend who I've known since we were 9. I tend to 'latch on' to people who don't necessarily want to be friends, then they get fed up with me. Have never had a romantic relationship or even been close (although I did go out with someone for three months without realizing he thought we were going out). Careerwise, I had a lot of difficulties with teacher training, and have never managed to keep a job without annoying the boss for 'not taking initiative' even though I was trying to do what I thought I was meant to. I also developed an eating disorder as a way of coping with social pressure and dealing with obsessions.

It sounds very much like myself.

I think eventually it's you who have to decide if you want a proper evaluation. In my opinion I think it's better to know what issues you have than trying to deny and hide them. Initially it can be hard to accept a label but on the long run it'll pay off.



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19 Aug 2012, 2:57 pm

Getting your family on board with the issue might be the hardest part. Although it is technically not necessary - if you feel it is, then it is. Family support is a #1 need for most people who haven't become estranged from them; after all, it's one of the basics of human existence.

My family has responded with indifference so far, and it's aggravating!

Most of their points of view seem to fall under the umbrella of:
"You've gotten where you are today, and we're happy with that. Why aren't you?"

The bottom line, just about no one (but other aspies) can put themselves in your shoes, even for a minute it seems. So to try and explain these things to family is difficult. You might want to make a list of experiences and "bad habits" - which they have likely become used to - and describe how fall under those of AS.

Then comes the had part for the family members: getting past denial of what's hopefully right in front of them.


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lambey
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19 Aug 2012, 3:43 pm

well i've decided that tomorrow im going to try and call the doctors to make an appointment with my GP about getting a diagnosis. ill probably chicken out though :P



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21 Aug 2012, 12:44 pm

OJani wrote:
It sounds very much like myself.

I think eventually it's you who have to decide if you want a proper evaluation. In my opinion I think it's better to know what issues you have than trying to deny and hide them. Initially it can be hard to accept a label but on the long run it'll pay off.


I'm seriously considering it...once school starts back, I'm going to ask a woman whose kids I babysit (and who is a psychologist who noticed that I could have AS before I'd mentioned it to her) what she thinks and if she thinks it's worth doing. Very nervous about asking her though, don't know her that well and don't want her to think I'm being too open with her but she brought it up first!