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ladraven
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17 Jul 2012, 10:03 am

So, I have suspected for a few years that I may have AS. I always score high on on-line tests (although suspicious of anything that tries to diagnose on-line) and am thinking of approaching my GP for refferal to diagnosis. However I am wondering if I really need to have it done or if its just to satisfy my curiousity. I have coped with life till now. I am making headway in reading people and in making appropriate replies, although rarely. I also wonder if my circumstances point to me not having it. I am 35, married and have been in my relationship 12 years and have a son. I have been diagnosed in the past as having social anxiety but nothing seems to fit my many eccentricities like AS does. So basically is it worth having diagnosis as an adult??

BTW, sorry if this is a repeat topic, I did check but nothing came up or if I have broken any other rules as this is only my second post after a little lurking.



Nikkt
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17 Jul 2012, 10:49 am

I'm sure I have seen quite a few posts like this, but maybe I only think I have because they resonate. Either way, I never got to post in them, so I'll do that now.

To answer your question, I would suggest writing down what difficulties you face that may be associated with AS to help you try and sort out if 'knowing' you're on the spectrum rather than 'suspecting' would be helpful. It's easier to look at things objectively if it's written down, I find.

Then think about how much these difficulties are impacting on your life. You might be married, but how's your relationship? You might function socially, but is it so exhausting your home life and relationship with your son is compromised? (I'm not suggesting this is the case, just providing examples). Are you happy where you are in life? Would a diagnosis rid you of long-held guilt? Or would you be happy making peace with the idea that you probably have AS, but don't necessarily need a formal diagnosis to accept it and move on.

I made the last choice for four years - I reasoned there was nothing to be gained from a formal diagnosis. I was pretty sure I had it but was relatively happy with my life and how I was coping at the time. (And you can't get diagnosed unless it's impacting your life in some way.) It was only when my grades started to fall at Uni and my occasional self-loathing became almost constant I knew something had to be done.

So for me, these have been the positives that have come from my diagnosis:
--> I understand the way my brain works a little better, and don't beat myself up so much when I do something 'odd' or even enter a shut/meltdown. I just think 'well, there goes my executive function for today, but it'll be back online tomorrow', rather than 'what the hell is wrong with me? I'm a total freak!'
-->My Mum has just started to get used to the idea and is now reading literature on the subject(!) So instead of saying "you're an intelligent adult, this shouldn't be a problem!", she's ringing me up and saying "now I understand why you did/do [enter strange quirk]!"

Disadvantages, for me:
-->I went through a pretty heavy identity crisis post-diagnosis for aboout three months. It's a big paradigm shift. I thought I was ready for it, but I really really wasn't. (I got over it, btw)
--->Initially my Mum rejected the idea (not outright, just actively avoided the subject). Family can take it personally.

Good luck with your decision! And enjoy the journey...


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DrPenguin
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17 Jul 2012, 11:09 am

33 old single guy. Never knew anything about AS so just thought it was me that was broken. Reading about it, I've always had a lot of the symptoms and just knowing I'm not alone in it has helped, plus the advice on this site. I'm worried that an official diagnosis will mean its written down permanently, and could effect my eligibility to work, get insurance etc, but not sure if knowing for sure will change anything or have any benefits but part of me still wants to know.

I do think not knowing for 33 years has forced me to learn to act like an NT and especially to read people (I do it in a different way to most people I know (friends do it subconsciously I do it analytically and have to concentrate to do it)).


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ladraven
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17 Jul 2012, 12:19 pm

When I say suspect, I am fairly sure that I do have it. However I have no medical training and wouldn't like to say either way.



parrow
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17 Jul 2012, 1:40 pm

It depends.

If want an ADA accommodation at work or ever try to make a claim, you need the diagnosis.

Otherwise, no. Never. It will never get off of your record. It will be held against you in court. If you ever need individual medical coverage in the US, forget it. Say goodbye to affordable life insurance.

Right now my 6 yr old daughter is on the autistic spectrum. We have a great doctor. He knows this and works closely with us. Right now we are withholding her from getting the diagnosis at his recommendation to allow us more choices in how our daughter is educated. He has warned us that once she gets an Autistic label on her record, she will never be treated the same. But on the other hand if she needs more assistance than she gets, then we should make the official diagnosis as the amount of assistance she gets will jump way up.

Just know that there is no going back.



DrPenguin
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17 Jul 2012, 2:13 pm

Nikkt wrote:
I'm sure I have seen quite a few posts like this, but maybe I only think I have because they resonate. Either way, I never got to post in them, so I'll do that now.

To answer your question, I would suggest writing down what difficulties you face that may be associated with AS to help you try and sort out if 'knowing' you're on the spectrum rather than 'suspecting' would be helpful. It's easier to look at things objectively if it's written down, I find.

Then think about how much these difficulties are impacting on your life. You might be married, but how's your relationship? You might function socially, but is it so exhausting your home life and relationship with your son is compromised? (I'm not suggesting this is the case, just providing examples). Are you happy where you are in life? Would a diagnosis rid you of long-held guilt? Or would you be happy making peace with the idea that you probably have AS, but don't necessarily need a formal diagnosis to accept it and move on.

I made the last choice for four years - I reasoned there was nothing to be gained from a formal diagnosis. I was pretty sure I had it but was relatively happy with my life and how I was coping at the time. (And you can't get diagnosed unless it's impacting your life in some way.) It was only when my grades started to fall at Uni and my occasional self-loathing became almost constant I knew something had to be done.

So for me, these have been the positives that have come from my diagnosis:
--> I understand the way my brain works a little better, and don't beat myself up so much when I do something 'odd' or even enter a shut/meltdown. I just think 'well, there goes my executive function for today, but it'll be back online tomorrow', rather than 'what the hell is wrong with me? I'm a total freak!'
-->My Mum has just started to get used to the idea and is now reading literature on the subject(!) So instead of saying "you're an intelligent adult, this shouldn't be a problem!", she's ringing me up and saying "now I understand why you did/do [enter strange quirk]!"

Disadvantages, for me:
-->I went through a pretty heavy identity crisis post-diagnosis for aboout three months. It's a big paradigm shift. I thought I was ready for it, but I really really wasn't. (I got over it, btw)
--->Initially my Mum rejected the idea (not outright, just actively avoided the subject). Family can take it personally.

Good luck with your decision! And enjoy the journey...


I can definitely relate with this post and writing the stuff in lists helped me decide that there was a significant probability I have it. Apart from the two people who told me I was a sociopath like Cumberlatch in Sherlock Holmes as they got all this started (they looked at the AS info and agreed) think they might become friends, otherwise I've only told my cousin yet (the kind caring one of the family) and she reacted with almost hostility to the idea and has avoided it since.

Definitely having identity crisis but am happier knowing its not just me and that other people are coping with it and that I can post about my eccentricities to people who understand and relate to them is great.


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Your Aspie score: 139 of 200
Your neurotypical (non-autistic) score: 68 of 200
You are very likely an Aspie


OJani
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18 Jul 2012, 10:55 am

Nikkt wrote:
So for me, these have been the positives that have come from my diagnosis:
--> I understand the way my brain works a little better, and don't beat myself up so much when I do something 'odd' or even enter a shut/meltdown. I just think 'well, there goes my executive function for today, but it'll be back online tomorrow', rather than 'what the hell is wrong with me? I'm a total freak!'
-->My Mum has just started to get used to the idea and is now reading literature on the subject(!) So instead of saying "you're an intelligent adult, this shouldn't be a problem!", she's ringing me up and saying "now I understand why you did/do [enter strange quirk]!"

Disadvantages, for me:
-->I went through a pretty heavy identity crisis post-diagnosis for aboout three months. It's a big paradigm shift. I thought I was ready for it, but I really really wasn't. (I got over it, btw)
--->Initially my Mum rejected the idea (not outright, just actively avoided the subject). Family can take it personally.

I can identify with it. My post-diagnosis crisis lasted for about a year, though, and I mean self-diagnosis. An official diagnosis was only a milestone on that path. I can see how parents can take it personally, strangely enough. At the end, I think it's better to have things explained and pour clear water in the glass.

The single most valuable benefit of my diagnosis is to confirm what I've already known. It's important to me, having it I can stop persevering on it and move on. After diagnosis I went to a therapy and it's turned out to be a good idea, it helped me a great deal with my self-esteem, by assisting me to recollect and rearrange some of my memories that are important to me, making my expectations about the future more realistic, in a positive sense.



ToughDiamond
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18 Jul 2012, 11:18 am

It helped me because I was already in a job where one or two of the bosses were shoving me into some very Aspie-unfriendly work, and stepping up the pressure every year, thinking I was just awkward....it's a university and for some reason they have to stick to politically-correct stuff like non-discrimination, so theu had little choice but to make some adjustments, i.e. get off my back. I feel a lot better at work now. The place doesn't stress me out anything like as much as it was doing.

It's also helped me to understand myself a lot better. It was depressing to begin with, knowing that I was never going to be "normal," but over a year or two I've come to see the knowledge as doing more good than harm.

It hasn't helped much with partners, not yet anyway. My wife left me a few days after my diagnosis. She's still not clear as to why she left, and has never admitted it was the AS, so I can't be sure it was a case of her taking the DX to mean I'm incorrigible, but I think that was a consideration. On the other hand I'm probably well shut of anybody who could be so disloyal as to desert me at such a vulnerable time.

But with friendships and relationships, at least I know my likely limitations now, and I know some of the dangers. I'm still working a lot of stuff out, e.g. whether I really "fall in love" or whether it's more like a special interest for me. I did notice that my partner selection filter was broken (judgement of character), which means that I've taken on some really extreme partners without realising the likely problems I was letting myself in for.

So for me it's worth knowing. So much about me makes sense now, when before I just thought I was weird or antisocial. And at least I can see my problems about knowing my feelings as alexithymia rather than wasting my life trying to use psychoanalysis to dig out murky, repressed Freudian secrets.



ladraven
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18 Jul 2012, 1:06 pm

I am leaning towards it so I am covered by the equality act (UK law), if I should need it at work although I am already covered for 2 other non related conditions.

I find it interesting that family had an aggressive/negative attitude towards diagnosis. My husband always comments that I never open up like I don't trust him. So when I opened up about how I think AS is an possibility, which for me was a huge huge thing, he angrily rejected the idea and started to refer to it as A**h*** syndrome. I don't open up to anyone else and have no friends that I could share with and so I am looking at doing this alone. I realise that probably isn't a good thing.



Matt62
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18 Jul 2012, 2:00 pm

While I still am seeking a current dx, I have yet to find any benfits in doing so for an adult. In my case I just want to know if what my parents always denied to me is actually the TRUTH. And to have a working term for it..
Beyond that, I do not think there are any benefits. I have found virtually no books or resources for adult Autistics to date.


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TalksToCats
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18 Jul 2012, 2:01 pm

I'm female and UK based and have recently decided to seek diagnosis.

My main reasons are I think it will help me understand myself better and also make it easier to get accommodations from work if I need them.

In my case there are other possible reasons as to why I might have some of the AS characteristics I have, so I want to see a professional to be sure.

I've posted about it on this thread here:-
http://www.wrongplanet.net/postt200862.html

I approached my GP with results of online tests and a set of reasons as to why I should be referred for assessment. I have had no problem with getting a referral through the NHS, though I think it may be some months before I get to see anyone about diagnosis.

However, I have a very good relationship with my GP and I've been seeing her in relation to anxiety and depression for over 18 months now, so this made the referral process easier for me.

There has recently been some NICE guidance on diagnosis for adults in England and Wales, there is a thread about it here:-

http://www.wrongplanet.net/postp4750844.html



ToughDiamond
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18 Jul 2012, 5:11 pm

Matt62 wrote:
I have found virtually no books or resources for adult Autistics to date.

I've not seen many resources either, except some kind of group therapy sessions for Aspies in Leicestershire that's very inexpensive. My workplace has an autism awareness teacher to help Aspie students but my request as an employee to see one of those has been ignored. I would probably have qualified for the DLA cooking component if I'd realised I needed a toff to put it in writing for the benefits officials, but that benefit is to be abolished soon anyway. There's the NAS, who have given me some good advice once. You might well find a Relate counsellor or two who could give you personal or couple counselling, though they charge quite a bit. They do an email counselling service too, I'm still waiting to find out if they have an AS-savvy counsellor for that. I would think people like Tony Atwood and his pals would have some kind of service that extends to adults, though I don't know the charges. He's certainly written about adults.

Google "adult aspergers" and "adult aspergers books" - seems to be a lot there. Personally I haven't partaken of any services except Wrong Planet, the little bit from NAS, and an hour's post-DX discussion with the clinical psychologist. I'm about to try some email sessions with Relate, with my estranged wife participating, to help us move on, and if that does much good then I might try some personal counselling with them too.



autotelica
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18 Jul 2012, 6:14 pm

I am hoping my diagnosis helps me understand myself, but so far it has only served to confuse me and give me a complex. Now I'm viewing everything I do through this "autistic" filter. Oops, I just stuttered. Is that my AS coming through? I can't stop grimacing and wiggling my toes, and I keep daydreaming about spinning around. Just me being quirky, or me being autistic? Do other people think I'm autistic, or is it just my therapist and the neuropsychiatrist who evaluated me? On and on, that's what my brain has been doing for the past week.

I preferred my schizoid dx. It was much more straightforward and less abstract.

I don't know what tangible benefits I can even get. I'm not going to go to my boss and tell him I'm autistic, please don't get me this or that assignment. I'm not going to tell my family either, because I don't want to argue about it or teach them about what it means. I don't even know.

The only person I can see telling is my yoga instructor, and I have a feeling she suspects something because she is so skillful helping me during shavasana.



Erminetheawkward
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18 Jul 2012, 7:51 pm

I was almost 21 when I was diagnosed. Still a young'un, but adult enough. I think it was perfect timing because by this point I have developed enough confidence to take it in stride, and not doubt my abilities. I'm almost totally certain that if I were diagnosed as a kid or teenager, I wouldn't have received the news nearly as well. I can see myself being a lot more angry at myself than I was, or rejecting the diagnosis altogether. I could also see myself putting myself to a lower social standard and preemptively giving up.

I still don't know what this means for employment, or getting a boyfriend or eventually husband, but I'll be ok. At least I better understand my strengths and weaknesses now and can work with/around it.


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