Truly in need of help from other late-diagnosed adults.

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managertina
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11 Jan 2013, 12:10 am

I am more than with you on the need for a second opinion.

Seven years ago, I was tested for the first time. I had many of the classic descriptions of AS, including formal speech, repetitve speech, and different dress (though too formal for the environment!) as well as others. But got disqualified on a technicality, and even my friends told me that I likely had it (they have NLD, which I hear is related).

Seven years, several contracts, and two moves later, I now have the diagnosis from someone whose nephews have AS and therefore knew what it looks like. I feel like what I have gone through could have been avoided. I don't regret it, but wish I could still have had family close by. I can pass for NT, but I really think it depends on your work environment too... some will do it to you.



GrandTuringSedan
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11 Jan 2013, 3:17 am

Quote:
Lockheart


Hi, Lockheart.

This thread has helped a lot.

I would have trouble assuming this experience is unique among late-diagnosees, if only for the fact that I don't have any reason to believe there's anything especially unique about me. To one degree or another, we have all lost time and suffered the fruits of invalidation and misunderstanding. I keep thinking it must come down to probablility; If the right explanation isn't available, it cannot be applied.

Then we come to the possible reasons for its lack of availability. I know that there is a tendancy in the humanities to champion untestable ideas. I think it may go further in that psychology as a profession often fails to realize when it has crossed-over into 'falsifiable' territory. (For a good example: M. Scott Peck's The Road Less Travelled, chapter entitled 'The Miracle of Evolution'. The Psychologist attempts to use bad physics to prove that evolution is not possible without divine intervention. [face-palm])

I think it's ironic that the affectations we adopt over the years are a response to pressure to conform to NT expectations, but they make seeing the ASD nearly impossible to anyone but the Aspie and the true expert clinician.

I think we are in a similar place. I have no answers, yet. Although I am not encouraged by what I have learned, I have been dealing with myself long enough to know that I can't always trust my perceptions. I have come to the conclusion that I have a moral obligation to assemble that 1000-piece puzzle and to trust the picture that emerges. I gave-up on being understood when I was quite a young child. I immediately switched to survival and was convinced that the truth of who I was could never matter to anyone, so don't bother with it. I never did completely accept the version of me that I was offered by others, but I always felt subject to it because I had no better understanding on which to anchor myself. If I can finally stop responding to the perceived threat of NTs misunderstanding and discarding me (which has been all-consuming in my life), I will finally be free to live as and make the most of who I actually am.

I'm not looking for easy, just possible.

Many thanks and great success to you!



restlesspirit
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12 Jan 2013, 10:32 am

ive faking normal all my live but when it all came crashing down my fourth year of teaching,, I went to a psychologist,, mentioned aspergers, we discussed it a bit, he said proabraby BUT,, since i was coping well.. NO need for treatment and since i refuse to take meds, it was bascialy cope with it, we cant help you,, I later took a ton of the online tests, scored hi in the aspie range on all of them,,, even an ex boss who was my friend though i had it,, now im only faking it at work,, the rest of my life im not trying to be :normal: any more.. besides normal is just the mean of the population at study, i would be "normal" in an aspie population.



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13 Jan 2013, 8:05 pm

managertina wrote:
I am more than with you on the need for a second opinion.

Seven years ago, I was tested for the first time. I had many of the classic descriptions of AS, including formal speech, repetitve speech, and different dress (though too formal for the environment!) as well as others. But got disqualified on a technicality, and even my friends told me that I likely had it (they have NLD, which I hear is related).

Seven years, several contracts, and two moves later, I now have the diagnosis from someone whose nephews have AS and therefore knew what it looks like. I feel like what I have gone through could have been avoided. I don't regret it, but wish I could still have had family close by. I can pass for NT, but I really think it depends on your work environment too... some will do it to you.


your experiences make me think once again that self diagnosis is far more reliable than 'professional' diagnosis. and i say that as someone who was professionally trained to diagnose. : p


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LizNY
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13 Jan 2013, 8:07 pm

GrandTuringSedan wrote:
Quote:
Lockheart


Hi, Lockheart.

This thread has helped a lot.

I would have trouble assuming this experience is unique among late-diagnosees, if only for the fact that I don't have any reason to believe there's anything especially unique about me. To one degree or another, we have all lost time and suffered the fruits of invalidation and misunderstanding. I keep thinking it must come down to probablility; If the right explanation isn't available, it cannot be applied.

Then we come to the possible reasons for its lack of availability. I know that there is a tendancy in the humanities to champion untestable ideas. I think it may go further in that psychology as a profession often fails to realize when it has crossed-over into 'falsifiable' territory. (For a good example: M. Scott Peck's The Road Less Travelled, chapter entitled 'The Miracle of Evolution'. The Psychologist attempts to use bad physics to prove that evolution is not possible without divine intervention. [face-palm])

I think it's ironic that the affectations we adopt over the years are a response to pressure to conform to NT expectations, but they make seeing the ASD nearly impossible to anyone but the Aspie and the true expert clinician.

I think we are in a similar place. I have no answers, yet. Although I am not encouraged by what I have learned, I have been dealing with myself long enough to know that I can't always trust my perceptions. I have come to the conclusion that I have a moral obligation to assemble that 1000-piece puzzle and to trust the picture that emerges. I gave-up on being understood when I was quite a young child. I immediately switched to survival and was convinced that the truth of who I was could never matter to anyone, so don't bother with it. I never did completely accept the version of me that I was offered by others, but I always felt subject to it because I had no better understanding on which to anchor myself. If I can finally stop responding to the perceived threat of NTs misunderstanding and discarding me (which has been all-consuming in my life), I will finally be free to live as and make the most of who I actually am.

I'm not looking for easy, just possible.

Many thanks and great success to you!



i agree completely.


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AQ: 41/50


Arrow
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14 Jan 2013, 7:11 am

GrandTuringSedan wrote:
According to him, "Autistic people don't consider what other people think."


God help us from such specialists... Apparently women care and me personally and my mother are obsessed of what other people think... because that is the only way to learn the tricks to pretend to be normal...

I'm sorry you had to go through such a horrible life :( It really hurts to be misunderstood and mistreated for what you can't change. I hope life gets better for you now that you know.



weathergeek
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18 Jan 2013, 7:40 pm

For the second time in two weeks, I spent the morning at the office of a neuropsychologist. Last week was testing and this week was results. He asked me last week why I was there and I told him I suspected Aspergers and wanted to be tested. This morning he spent way too much time telling that as smart as I am, I shouldn't be having problems with social skills. Apparently I'm 'smart enough to figure it out', his words, not mine. He also said, and I quote, " I see no signs of autism...quit rocking and look me in the eye!". The irony didn't occur to me until this evening. Needless to say I won't be going back. Sigh.



justanothermonkey
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26 Jan 2013, 5:54 am

Thanks for this thread. Not feeling so verbal tonight, but can so relate. I am 60 and only figured out my Aspergers last year. Haven't gone for an official diagnosis -- seems a waste as I am already retired. Also had the experience years ago of being steered away from it by a psychologist who had set opinions that blinded him on the issue. Oh, well!

Like someone else said, "There was no Asperger's then, no ADHD, no ADD, dyslexia, etc. then - we were just weirdo rejects. I have to say, it's nice finally knowing what it is about me - I do feel a lot happier about it all. "

Glad to know about the Dinos thing. Now I know where to look for my tribe on here.


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GrandTuringSedan
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28 Jan 2013, 2:23 am

justanothermonkey wrote:
Thanks for this thread. Not feeling so verbal tonight, but can so relate. I am 60 and only figured out my Aspergers last year. Haven't gone for an official diagnosis -- seems a waste as I am already retired. Also had the experience years ago of being steered away from it by a psychologist who had set opinions that blinded him on the issue. Oh, well!

Like someone else said, "There was no Asperger's then, no ADHD, no ADD, dyslexia, etc. then - we were just weirdo rejects. I have to say, it's nice finally knowing what it is about me - I do feel a lot happier about it all. "

Glad to know about the Dinos thing. Now I know where to look for my tribe on here.


Thanks for your thanks. It scares me that so many people could be helped by concept of Autism, but the explanation simply isn't available to them. It's even jealously guarded by clinicians who seem to be threatened by it. Are they afraid of losing relevance??

Anyway, our own diagnoses seem to be more accurate than the professionals come up with. I'm glad to know that, for a lot of us, it's begining to make sense that things have made no sense.



thomas72
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29 Jan 2013, 5:14 pm

Reading some of these posts make me think there might not be any reason for me to even try to get diagnosed by a professional at age 40. I have self diagnosed myself recently and my parents always thought I had some sort of mild functioning Autism (I always thought they were joking, I thought I was normal).
Maybe my best bet is just to see a medical Dr to treat the associated anxiety and depression and hope the stress meltdowns at work are avoided to save my job.



geraldtonjjeeper
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29 Jan 2013, 10:38 pm

This is my first post. I have never discussed this in so public a forum and am a bit nervous. It has helped to read all of the other posts in this thread and I feel I may have something to add.

I was diagnosed with Aspergers Syndrome in 2004 at age 50.

It helped me immensely to validated and that my difficulties were not all of my own making. Not the hopeless individual and social misfit my family and friends had painted me to be over all my life. Constantly reinforced by parents criticism of my selfish personality and regular job changing! 40+ jobs, 30+ cars and more than 60 g/fs over 45 years! Getting any of them wasn't a problem, keeping them was!

After a lifetime of battling, primarily for acceptance from my family, wondering why I could not keep a relationship together, many many jobs and changes of address it all became clear.

Almost a lightbulb moment. Other people's opinions of me no longer matter so much! I WILL NO LONGER turn myself inside out to satisfy people who show no understanding or desire to understand my situation. I'm finally free!! !

I no longer had to spend my time repairing relationships or wonder why they had flown to bits, all I had to do was learn to accept the "new" me!! It has not changed my problems with the NT world, nor reduced my need for antidepressants, blood pressure meds etc, but it has given me a much greater appreciation/understanding of myself and my skills and helps me justify in my own mind all those likes and dislikes, routines etc, etc!

I was diagnosed by a Clinical Psychologist after facing charges for a misdemeanor I didn't commit, and needed assistance to deal with the subsequent anxiety and increased depression! I missed out on jail by the skin of my teeth!

Every cloud has a silver lining, mine was learning of my Aspergers and all the effects on my life in the past and the opening of the door to a new understanding of how I am. He was very good. I read posts from you all and wonder why your Psychs were so dismissive and non-empathic!

I was obviously very lucky!

However with all my reading over the past few years there are a few things in the literature I take exception to.

1) That Aspergers is "curable." Crap.....this is a hardwiring difference, not a disease. A processing difference. In IT terms, a different Operating System!! As a minority though it's not surprising that "they" want to "cure" us. For the last 20 years I have thought it would be wonderful to have a CD Rom in the back of my head and to be able to change the disc occasionally!!

2) That we can learn to be more empathic, less solitary, make conversational small talk, etc, etc! I can only mimic the actions of other people and only for a while. If it goes on too long it all becomes too hard and I seem to slide away quietly to the edge and soon after leave! Conversations, I have to control, or I get lost as I cannot process the concepts of others fast enough to keep up and it soon becomes just noise. Large gatherings will see me take many moments of time out as I get relief from the fracturing of my thoughts brought on by too many voices! It's like having a card file for every situation and as they change needing to return to the file and pull out the one relevant to the new situation! Exhausting!

3) That I should just get over it! Everyone has difficuties occasionally!! True, the difference is that NT seem to be able to extricate themselves from a difficult social situation, whereas I find I tend to dig a deeper hole and it all blows up in my face. So many times my life has spiralled out of control (after I have said or done something to somehow offend people) while I beat myself up for doing or saying the wrong thing. Embarrassed to such a degree I cannot look people in the face and eventually quit and move (here we go again!) to try to re-establish some quietude and some semblance of peace!

4) With training Aspergers can be usefully employed. I was a ship's master with quite good tickets of competency and the water was a field I had enjoyed from childhood. While I was a sole operating fisherman I had no problems with the work as I only had to satisfy myself. As my qualifications improved I moved into employment and eventually was captain on oilfield vessels up to 80 metres with at one stage 33 crew!! I thought I'd finally cracked it!! Unfortunately what gave first were 2 marriages followed by my sanity! I had a "nervous breakdown" a major depressive episode and that was the end of my sea going career. By that stage I'd had some 30 jobs with many different employers and had become unemployable because my resume showed too many moves during my working life and no prospective employer would take a chance on me! Fair enough! So I retired early, at 57. I don't own a house,have no superannuation, no life savings and now live on the pension. I live on my own, in a one bedroom unit and my best and only friend (a woman) lives 5 doors up the street!

5) With practice we can hold down a relationship. How many lifetimes do I give it? It's all too difficult! I only have one heart, how many times can it be broken? A minefield of romantic intentions gone wrong. When children and then blended families become involved it just gets impossible as the goalposts move with such blurringly fast speed I get left far behind! A real bummer, as to enjoy the intimacy a permanent relationship can deliver has been the most important thing to strive for in my life and one I have not quite achieved! I'm alone and learning not to be lonely!

I have enjoyed reading your posts and hope mine is neither too long or too tedious!



Rascal77s
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06 Feb 2013, 6:56 am

geraldtonjjeeper wrote:
This is my first post. I have never discussed this in so public a forum and am a bit nervous. It has helped to read all of the other posts in this thread and I feel I may have something to add.

I was diagnosed with Aspergers Syndrome in 2004 at age 50.

It helped me immensely to validated and that my difficulties were not all of my own making. Not the hopeless individual and social misfit my family and friends had painted me to be over all my life. Constantly reinforced by parents criticism of my selfish personality and regular job changing! 40+ jobs, 30+ cars and more than 60 g/fs over 45 years! Getting any of them wasn't a problem, keeping them was!

After a lifetime of battling, primarily for acceptance from my family, wondering why I could not keep a relationship together, many many jobs and changes of address it all became clear.

Almost a lightbulb moment. Other people's opinions of me no longer matter so much! I WILL NO LONGER turn myself inside out to satisfy people who show no understanding or desire to understand my situation. I'm finally free!! !

I no longer had to spend my time repairing relationships or wonder why they had flown to bits, all I had to do was learn to accept the "new" me!! It has not changed my problems with the NT world, nor reduced my need for antidepressants, blood pressure meds etc, but it has given me a much greater appreciation/understanding of myself and my skills and helps me justify in my own mind all those likes and dislikes, routines etc, etc!

I was diagnosed by a Clinical Psychologist after facing charges for a misdemeanor I didn't commit, and needed assistance to deal with the subsequent anxiety and increased depression! I missed out on jail by the skin of my teeth!

Every cloud has a silver lining, mine was learning of my Aspergers and all the effects on my life in the past and the opening of the door to a new understanding of how I am. He was very good. I read posts from you all and wonder why your Psychs were so dismissive and non-empathic!

I was obviously very lucky!

However with all my reading over the past few years there are a few things in the literature I take exception to.

1) That Aspergers is "curable." Crap.....this is a hardwiring difference, not a disease. A processing difference. In IT terms, a different Operating System!! As a minority though it's not surprising that "they" want to "cure" us. For the last 20 years I have thought it would be wonderful to have a CD Rom in the back of my head and to be able to change the disc occasionally!!

2) That we can learn to be more empathic, less solitary, make conversational small talk, etc, etc! I can only mimic the actions of other people and only for a while. If it goes on too long it all becomes too hard and I seem to slide away quietly to the edge and soon after leave! Conversations, I have to control, or I get lost as I cannot process the concepts of others fast enough to keep up and it soon becomes just noise. Large gatherings will see me take many moments of time out as I get relief from the fracturing of my thoughts brought on by too many voices! It's like having a card file for every situation and as they change needing to return to the file and pull out the one relevant to the new situation! Exhausting!

3) That I should just get over it! Everyone has difficuties occasionally!! True, the difference is that NT seem to be able to extricate themselves from a difficult social situation, whereas I find I tend to dig a deeper hole and it all blows up in my face. So many times my life has spiralled out of control (after I have said or done something to somehow offend people) while I beat myself up for doing or saying the wrong thing. Embarrassed to such a degree I cannot look people in the face and eventually quit and move (here we go again!) to try to re-establish some quietude and some semblance of peace!

4) With training Aspergers can be usefully employed. I was a ship's master with quite good tickets of competency and the water was a field I had enjoyed from childhood. While I was a sole operating fisherman I had no problems with the work as I only had to satisfy myself. As my qualifications improved I moved into employment and eventually was captain on oilfield vessels up to 80 metres with at one stage 33 crew!! I thought I'd finally cracked it!! Unfortunately what gave first were 2 marriages followed by my sanity! I had a "nervous breakdown" a major depressive episode and that was the end of my sea going career. By that stage I'd had some 30 jobs with many different employers and had become unemployable because my resume showed too many moves during my working life and no prospective employer would take a chance on me! Fair enough! So I retired early, at 57. I don't own a house,have no superannuation, no life savings and now live on the pension. I live on my own, in a one bedroom unit and my best and only friend (a woman) lives 5 doors up the street!

5) With practice we can hold down a relationship. How many lifetimes do I give it? It's all too difficult! I only have one heart, how many times can it be broken? A minefield of romantic intentions gone wrong. When children and then blended families become involved it just gets impossible as the goalposts move with such blurringly fast speed I get left far behind! A real bummer, as to enjoy the intimacy a permanent relationship can deliver has been the most important thing to strive for in my life and one I have not quite achieved! I'm alone and learning not to be lonely!

I have enjoyed reading your posts and hope mine is neither too long or too tedious!


One of the best posts I've seen on WP.



harrycontests
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24 Feb 2013, 10:15 pm

I have what may be a bit of an unusual situation in that the psychologist I first started seeing (for major depression) when I was 15 is still here and I am now seeing someone in his practice. My former pschologist doesn't see patients anymore, he plays a supervisory role.

When I first started seeing my current therapist, I told him of my suspicion of having Asperger's and told him he should talk to my previous doc and inquire about me. Mind you, when I was fifteen (I am now 44), the Asperger's diagnosis was not around.

I suspect my previous doc told him I was a classic example of Asperger's because my current doc seems to focus on it a lot in our sessions. He seems genuinely interested in how it affects my life and my reactions to the diagnosis.

It has certainly been an eye-opening experience for me. Not only did I not realize there were other people like me (in a small town, I don't see them often), but it was such a relief to know why I am the way I am that I cried when reading about Asperger's for the first time. Reading that book was like someone had opened my head and put my most secret thoughts down on paper.

I function fairly well, but like most people here I've been unable to hold down a job for more than 3 or 4 years. Luckily, I am back in my small hometown substitute teaching now where most everyone knows me and knows who I am.

Wow--that's quite a realization in itself. Other people knew me better than I knew myself all these years. It wasn't until after I figured out my Asperger's that I could look back on my life and make sense of a lot of things.

One thing I figured out is why the two teenage boys who befriended me at that age did so. One's mother was a special ed teacher, the other's mother was a psychologist. They recognized that something wasn't right and encouraged the friendships to help me gain social skills.

So many things from the past make sense now. My mother (now deceased) used to tell me that I didn't like being held when I was little. I was a horribly picky eater (still am, mostly). I definitely had (and have) dyspraxia. Just learning about that alone was like having the weight of the world lifted off my shoulders. I've always been prone to saying things that get an unexpected reaction ("yes, you do look fat in those jeans"). I've never decorated my home much. My sister has always hated me. I've always worn solid colors whenever possible....the list just goes on and on.

So I appreciate this forum. It's nice to be able to collaborate and confirm things.



GiantRabbit
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12 Mar 2013, 9:40 pm

Wow... so much of this sounds familiar to me! I'm 32 and I've spent 14 years seeing different therapists, trying to find out why I'm depressed, stressed out, can't understand other people, give others the wrong impression all the time, and have periodic meltdowns. Every therapist and psychiatrist I've gone to has attributed all but my social problems to childhood trauma. So... I've discussed all the least pleasant parts of my life over and over until I'm bored of them, while the therapists say things like, "That must have been so hard," which really means nothing to me. I've been told that I have "unipolar depression," disthymia, bipolar, PTSD, an anxiety disorder, and even temporal lobe epilepsy. But I don't meet the criteria for any of those things (except depression). Last year, I took an Asperger's quiz on facebook and scored really high, so I mentioned it to the therapist I was seeing. She said, "People with Asperger's have a certain look to them. You definitely don't have it or I would have known, right away." When I tell therapists about my social difficulties, they always say that I just need to have more confidence in myself. But I feel good about who I am, in general. I just don't understand how other people act.

Recently, I was chatting with a therapist online and she said that I sound like l have Asperger's. I started reading books about women with Asperger's, and they sound like they were written about me! Of course, not all of it fits... but most of it really does. My husband is reading the books and we're finally starting to understand each other. But I have no idea how to talk to a therapist about this. Last week, I told my therapist that she was making me very uncomfortable with her questions and she replied, "Your body language shows me that you are relaxed." It seemed like she was saying it in an accusing way, like she thought that I was lying to her. I told her that my body language doesn't mirror my feelings... I adopt the body language I think I'm supposed to have... and she didn't seem to believe me.

I would like to see someone who understands Asperger's. I'm new to all of this and would like for someone to help me understand what this means for me... but I don't trust psychologists or doctors. I either make them angry or they act like I'm stupid. I tend to come across as relaxed, confident, arrogant, or judgmental when I'm really feeling nervous, uncomfortable, intimidated, and self-conscious. I'm just trying to act appropriately. I think I seem normal when I'm calm, but doctors make me nervous, and being nervous causes big misunderstandings and conflict.



geraldtonjjeeper
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13 Mar 2013, 12:11 am

Hi Giant Rabbit, isn't it good to suddenly have the sun shine in on you after all those years wondering if you are really the person others describe you as!! ! I too have had a Clinical Psychologist tell me she didn't think I was AS! When I asked her for an explanation of my problems she was stumped! I don't know where you are but I see a guy in Yamba/Maclean NSW when I need to stocktake my world! I can let you know his name by PM if you would like that! He is very relaxed and gentle, a bit eccentric himself and has been my saviour! I too appear normal, very relaxed in therapy, all slumped on the couch but he has been seen through that!



Yaezaki
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20 Mar 2013, 6:09 am

Hi all,

Having lurked around the WP boards for a long time I suppose I really should start to contribute.

Firstly; kudos to all who have posted to share their experiences, trials and tribulations and to those offering support.

Secondly; I am in the rather awkward position of being a 'therapist' and an aspie (diagnosed Oct last year at 36) and it is somewhat sad that so many people have had difficult or downright awful experiences of the mental healthcare system. The system isnt perfect and the training of any of the relevant professions (I am a psychiatric nurse by background) has its bias and blindspots but the mantra that I hold dear is that as 'therapists' (I hate that term - I'm a nurse) should 'do with' not 'do to'.

We should be working with our clients to address what they want and the direction they wish to pursue whilst providing guidance through information on barriers/hazards that may appear along the way. No therapist, be they a psychiatrist, psychologist, nurse or other has the responsibility to make anyone 'better' that's the job of the individuals concerned. They are simply there to help with that process. The difficulties seem to arise either when individuals look to therapists to provide the answer i.e. a 'pill for any ill' approach or the therapist in their belief of their infinite wisdom disempowers the individual by labels or taking a paternalistic, directional approach.

As for me I still havent got my head around my diagnosis (which was from an adult aspergers specialist), my family and partner are in no doubt but I remain sceptical perhaps in part because I have spent nearly 20 years working in mental health and become very good at the social dance of the NT world. To continue the dance analogy, I admit for me I don't hear the rhytym or beat of the music but rather just follow the steps I have learned through observing others and if its a dance I havent seen then I struggle and end up hugely stressed, anxious and depressed (I have been anti-depressants on a couple of occasions in the past)

My stumbling block seems to be that admitting I have a reason to find social things difficult and change hugely stressful feels like an excuse, that I am a 'failure', which on a rational level is not the case on the basis of available evidence. So I am stuck in the quandary of either actually admitting to myself I am indeed Aspie and not berating myself for finding things difficult at times and thus feeling a sense of 'failure' or denying the diagnosis and dealing with the issues of chronic stress levels and its impact on my own mental health. Not a particularly great scenario in either event.

As time has past I am edging more towards admitting my own aspie-ness and taking a cold, hard look at why I experience the sense of failure that this brings as I would not view this as being the case for any individual who was working with me nor do I believe it in the scientific, rationale sense but the emotive element eludes me at present and this does have an effect on my mood.

Anyway thank you to anyone who manages to read this far and I apologise if it rambles in places

Yaezaki