Were you diagnosed as an adult and did it change anything?

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Xyzzy
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01 Aug 2011, 11:55 am

I've read through a number of the threads on this topic, but I'm still confused and uncertain about whether or not to seek a diagnosis.

I'm 45 and gainfully employed. However, I'm about as certain as I can be (short of getting a professional assessment) that I'm an aspie. I've taken every self assessment that I can and even when I cut myself a lot of slack, the results are always deeply in the ASD or Aspergers zones. I'm also seeing a lot of kindred spirits in the stories and backgrounds of the people on here.

For the most part, I've learned to act normal and I've overcome a lot of issues by brute force and by taking a "Jane Goodall" approach to dealing with normal people. I can understand and mimic thier behavior and I can even analyze and logically derive motivations and drivers. However, I don't really "get them" and most of the time I don't share them. Oddly enough, I've had numerous people tell me that I have a really high degree of "emotional intelligence", but they don't realize that it's as an observer and not as an active participant. The "wrong planet" thing is incredibly on-target.

My problem is that under stress it becomes much harder to keep up the pretense until I have to just "crawl under a rock" (as my wife like to put it) and decompress. In addition, because I've been successful with the act, people keep pushing me further and further out of my comfort zone until I resort to doing something self-destructive or hideously anti-social to dial it back a notch. The anxiety can actually get so bad that I'll end up with all sorts of physical symptoms. I've avoided promotions that require me to be more political and social. I've even left companies rather than accept an unwanted promotion. I have no problem with responsibility or accountability. It's trying to make sense of all of the nuanced communication and failing to do so. One if the things that I'm well respected for is being honest and authentic in my communications, but it's not a strength or a skill that I've developed. I just don't know any other way to function and I don't understand people who don't communicate that way. Imagine how difficult it is to be surrounded by people who want to know how I "learned" to communicate honestly and openly.

Sorry...I got into a bit of a ramble there....

Anyways, I've talked with my wife and GP about diagnosis and they've both basically said "what do you hope to get out of it?". Neither seems to understand that it's a puzzle that I'd really like to solve. I don't want it on my record and I don't expect a "cure". But I can't help but feel that confirming or denying this is going to result in some kind of deeper understanding or closure. My wife, especially, seems to think that the label is a really bad thing, that it's not going to change anything about me or the world around me and that I'm just setting myself up. I'm now really second guessing the value of diagnosis and wondering if I'm just obsessing about it rather than really being rational.

So, if you were diagnosed as an adult, did it have any value? Did you get the assessment off the record or on the record and did it change anything?

I'd really appreciate any feedback or advice. I've been staring at the phone number of a clinic that specializes in adult assessment for weeks now and I just can't work up the courage to make the call. Now I'm not even sure if I should be trying.



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01 Aug 2011, 12:38 pm

I can only speak for myself; I was diagnosed when I was 50. I too have a good job but I just wanted a diagnosis for personal reasons. All it actually did for me was to give me a sense of relief knowing there was a reason for the way I was. It also helped explain different parts of my past that before had baffled me such as why people had responded/reacted to me in particular ways or why I had struggled in certain areas. If I had to do it over again, I would take the same course of action.



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01 Aug 2011, 1:31 pm

Xyzzy wrote:
So, if you were diagnosed as an adult, did it have any value? Did you get the assessment off the record or on the record and did it change anything?


I was assessed and diagnosed "on the record." I can say with certainty that being diagnosed was valuable for me.

It's helped me get to a place where I'm slowly getting out of the habit of asking myself "What's wrong with me? Why can't I do all these things that other people can? Why can't I keep up with ordinary life tasks? Why can't I understand people and keep friends?"

I think I needed to have confirmation that my ASD-related issues were real--I spent my whole life being told things like "try harder," and I felt horrible about the fact that I couldn't try any harder, that my best effort wasn't good enough.... Having a diagnosis has helped me to start putting things into a healthy, practical and realistic perspective (as opposed to beating my head against the wall, steadily losing self-esteem and the motivation to keep working on things because I had no better explanation for my failures than the people who insisted that I didn't care and/or didn't try).

Being diagnosed also helped to smooth over some conflicts I had with family members....they don't take certain things personally anymore (when I can't see their perspective on an issue, they actually believe me when I say I'm trying and need more explanation....when I can't understand what they say to me, they actually spell things out, instead of getting inexpicably angry with me, etc.) That's largely just to their credit though, since not everyone would be so understanding--diagnosis or no diagnosis.

I've also been referred to different support services which I never would have looked into on my own. (I wouldn't have considered, let alone accepted, that I might need them.)

Xyzzy wrote:
Anyways, I've talked with my wife and GP about diagnosis and they've both basically said "what do you hope to get out of it?". Neither seems to understand that it's a puzzle that I'd really like to solve. I don't want it on my record and I don't expect a "cure". But I can't help but feel that confirming or denying this is going to result in some kind of deeper understanding or closure.


I was asked that as well and couldn't answer.....my reason was similar/the same as yours, I think: I just needed to know. I don't think a person needs any more reason than that.

If people see you succeeding in life, they might have no idea what you go through to get there--even if you tell them every painful detail...so it might be hard for them to understand why you'd even consider labelling yourself (via professional diagnosis or self-diagnosis) with something that society sees as inherently negative.

My only advice is this: Try not to let other people's reactions get to you. I encourage you to do whatever you think/feel you need to do, for whatever reasons you have. Self-understanding is important--it can inform a person's decisions and their outlook on life....so even if that's your only reason for considering a diagnostic assessment, it's a valid one.

Good luck with your decision!



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01 Aug 2011, 2:07 pm

I want very much to be diagnosed. I'm 30 so I seriously doubt I would get any quantifiable benefit from it, but I like you am totally certain I am an Aspie and the diagnosis would provide peace of mind.


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RedHanrahan
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01 Aug 2011, 5:13 pm

Yes and Yes, but my life needed some sorting and answering some questions was a good place to start.

peace j


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Moriath
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02 Aug 2011, 4:52 am

I got a lot out of being diagnosed around 33 i think it was.

Had found myself burnt out on a couple of occasions where my body just went into shut down because of the strain i was putting it under trying to keep up with the normal people at work. Going out for meals in the evening and all day at the office when training and such was just too much for me to cope with and I couldnt work out why.

It gave me some wriggle room with the Office so I could duck out of the Social (extra curricular) activities most of the time and allowed me to manage my work schedule to suit me.

From a burnt out wreck I have made it back to virtual normality ( normal for me) with the help of the right drug treatments and sheer bloody mindedness pushing myself through barriers that I had put up that I hadnt needed too if I had understood and managed my condition properly from the start.

Thats not to say that everything is easy now, its the complete opposite, but I think it will just be hard for the rest of my like. But at least with the diagnosis I was able to make people aware of what i needed rather than not even knowing myself and just saying i felt tired or overwhelmed.

Even though theres no cure as such at least it lets you know why you are what you are.



boxoffrogs
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02 Aug 2011, 5:47 am

If there is no ailment, why seek a diagnosis, if it's not broke, don't fix it, if your qulaity of life is not degraded why seek the possibility that it might be via diagnosi.

I sought a diagnosi, as trying to recover from something the medics called a near nervous breakdown, issues with post traumatic stress following an attempted murder, the break up of my marriage and the recent loss of my job, I was falling and falling fast, sucide ideation was very tangible and an option I weighed up each day, but I struggled on, took a college course in art as therapy and eventually because I was failing in that, the college sent me to a psychologist who diagnosed aspergers.

I aways knew there was something wrong with me, as I just didn't fit in to anything I tried and it seemed I was always the butt of people's jokes, jokes I did not understand so became an unhappy clown of sorts, perhaps the way clowns are created even.

When the diagnosis came, I was elated, it gave method to my madness and reason why me, the diagnosis gave me a new lease of life, a new life even to explore, and despite being diagnosed at 40, I feel young again, young and free, the world ins my oyster.

But if life is sweet, why seek it's possible undoing, as age goes against you in terms of employment, don't give employers another reason to cross you off the list, as in this society, it seems labels count for much.

My work history is excelling at everything I did, self taught in most, but failing in promotion as I struggle with people, so despite how good one is at their job, it matters not if you are no good with people, so promotion to be in charge of others is a non starter and my history.

Me, I am seeking self employment, working with metal art and machines, it is highly unlikely I will have to deal with people much beyond the person I rent the workshop from and he also is mad as a box of frogs too, and I suspect undiagnosed aspie himself, as we are so alike in our interests and motivations.


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kt24
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02 Aug 2011, 12:05 pm

I too found it incredibly difficult to get the courage to get a diagnosis. It took me 2 years to go to my GP in the first place.

To me, it was invaluable and incredibly useful to get a diagnosis. It now means I am far better able to control my anxiety and stress, I am learning what makes my meltdown/shutdown and so can do things to stop it, and know what to do before I get overwhelmed.
This means I am able to hold down a full time job, especially as adjustments have been made to help me deal with change and in the lighting in my room to stop sensory overload.
A diagnosis meant that I could put a lot of things in context, and look back at things that have happened, trying to understand why. I think it's also given me a lot more confidence to stop pretending, and start to be me.

As to being "on the record" or not, my doctor did the strange thing of putting a list of symptoms on the record, but not AS itself, even though she said that I did have AS- so it goes something along the lines of social anxiety, communication difficulties and sensory sensitivities.


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MsMarginalized
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02 Aug 2011, 6:40 pm

I'm 44 & was diagnosed 3 years ago. IT WAS SUCH A RELIEF TO FINALLY FIND OUT ***WHY*** I AM SO DIFFERENT!

The relief was ginormous...my families response much less so! My husband "saw it" as soon as he read the paperwork my Dr. gave me...he agreed 100%. My extended family has SUCKED. They refuse to "give me any credit" that my past (bad) actions/behaviors stem from the fact that I am on the autism spectrum! They've refused repeated apologies from me in the past (because it was a definite cycle of me doing something to upset/offend them, apologize & try to change and then do something ELSE that upset/offended them) Now that I have the diagnosis, I know the "why" of it all now & (hopefully) with therapy I can improve myself...as far as my family is concerned; I don't think they give a fig. Which is fine by me, because I've been deciding that they aren't worth a fig, either!



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03 Aug 2011, 10:37 pm

Though I didn't seek a diagnosis, I did realize that I and my brother among other family members are both on the spectrum.

I learned this during the diagnosis of my son while he was little and we were going through soo much.

It has helped immensely for me to understand myself. For me to understand other people around me. And for me to understand my son.

I had already been in counseling on and off for a long period of time with different psychologists believing I was bipolar - heck I probably am to a small extent. However, the autism/autie spectrum is a perfect fit and explains sooo much, like why I enjoy reading so much. And why I don't like too much tv (over visually stimulated) or too much noise.

I can now relax knowing how God made me. I've also learned and am learning how to use the behaviors to my benefit.



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05 Aug 2011, 3:05 pm

I went for more than two years without seeking a diagnosis after I started suspecting I had AS. When I finally sought one, it was due to starting over with education, as my last degree turned out to be a disaster when it came to getting a job. One of the reasons I didn't get relevant jobs was my existing bipolar diagnosis, and the reason I didn't get any jobs at all was my AS traits causing interviews to go badly.

So as I spent too long getting my previous degree without any kind of support from the university, I decided to seek a diagnosis. As I've almost used what I can get of normal government scholarships, I hoped for a diagnosis to trigger rights to additional financial support too. Now, after being diagnosed, I have a lot more rights to practical support in university, and it also seems I'm getting the financial support I need, due to being mis- or underdiagnosed while getting my previous degree. Which also caused me to seek the wrong education.

I guess those concerns aren't relevant to your situation though, but getting the diagnosis also helped a lot in my personal life. Even though my friends have accepted me as I am, knowing about the diagnosis gives them an explanation to why I act certain ways in certain situations. The same goes for my parents, sister and extended family. As I moved back home after getting my last degree, the diagnosis has helped a lot when it comes to dealing with my parents (and when it comes to them dealing with me...). I don't really meet most of my extended family that much, but now they have a context to how I've always been, and even though they've always accepted me, understanding is never bad. And not least I finally have a confirmation of my own suspicions, which makes it a lot easier to accept myself, and take necessary precautions in my own life.

So even though you might not need the diagnosis for benefits or support of any kind, I'd say getting a diagnosis usually is helpful when it comes to one's personal life. Unless you have reason to believe it would impact your life negatively when it comes to your career or relationship to others, I highly recommend getting a diagnosis. At least it has changed my life for the better.



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06 Aug 2011, 3:48 pm

My diagnosis helped for three reasons.

1) I always felt like I was giving 110% in social interactions and everyone else seemed to feel like I was giving barely 50% and always expected me to get better, try harder, and get over it. I felt like I was somehow a failure. Getting my Diagnosis took a lot off stress of my shoulders because it was validation that I really was giving 110% and I wasn't just lazy or stupid.

2) When my father discovered my Diagnosis it blew him away because he had some similar traits. More importantly, it revealed that my grandfather would have been considered downright low-functioning and it answered a lot of questions about why he was raised a certain way and how he had developed.

3) AS can absolutely be genetic and officially knowing can allow you to seek guidance on how to help your own children if you ever have them.



abc123
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06 Aug 2011, 5:15 pm

I just wanted a definite answer for peace of mind. Maybe an aspie need for things to be black and white?
There are some services that require a diagnosis. It counts as a disability (UK) so you can get adjustments at work etc.

I have gone through this because of having depression since I was a teenager. I have funding for 10 sessions with someone at the Aspergers centre and they have counselling. I need the diagnosis to access this.

I got diagnosed in June and I think it has put me under a lot of stress. I am quite prone to this anyway and came to the assessment because of longstanding difficulties that I have not yet resolved with conventional treatment for depression/anxiety. I have a PhD, I'm now married, but I've always had trouble getting jobs and I've been an admin temp for 4 years since my PhD because I interview but don't get the job. I also seem to have move through groups of friends without keeping them even though we don't fall out. I think outwardly I fit in as people think I am nice but I am very quiet and shy, don't upset things and don't draw any attention. I don't do things noticeably wrong, but socialising is awkward and I struggle to talk to people.

Reading through, it is your decision regardless of what anyone else thinks you should do. I'm not sure which country you are in but in the UK (you said GP) the National autistic society was very helpful. It is very difficult to get a diagnosis-practically and because as an adult you have coped with it for so long it might need an expert to be able to diagnose. I needed 2 referrals to a specialist asperger centre, was denied funding, complained and got funding the 2nd time on the NHS. My 1st psychologist was unsure. At the specialist centre they gave a confident diagnosis. I was told it is easier for someone to identify that is seeing cases every day, rather than a few a year. The NAS did encouraged me to hold out for this specialist centre as I was offered a 2nd opinion from a non specialist.

I should add we now think my Dad has AS but he is in denial. My parents are divorced but my Mum says it has made her see things in a different light as she thought things were her fault and she now sees my Dad was just displaying traits of Aspergers. Just thought I'd say it has knock on effects e.g. spouse.



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06 Aug 2011, 5:45 pm

RLgnome wrote:
....When I finally sought one, it was due to starting over with education, as my last degree turned out to be a disaster when it came to getting a job. One of the reasons I didn't get relevant jobs was my existing bipolar diagnosis, and the reason I didn't get any jobs at all was my AS traits causing interviews to go badly.

So as I spent too long getting my previous degree without any kind of support from the university, I decided to seek a diagnosis. ...

So even though you might not need the diagnosis for benefits or support of any kind, I'd say getting a diagnosis usually is helpful when it comes to one's personal life. Unless you have reason to believe it would impact your life negatively when it comes to your career or relationship to others, I highly recommend getting a diagnosis. At least it has changed my life for the better.


Wow, this post rings so true and similar to my experience. I have no dx of AS, but many other things. Going for a learning differences assessment straightened out a bunch of things. An AS assessment may be do difficult for me to receive, due to lack of family and childhood information. But I plan on trying to get one at some point.



RLgnome
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06 Aug 2011, 6:25 pm

InsomniacDreams wrote:
An AS assessment may be do difficult for me to receive, due to lack of family and childhood information. But I plan on trying to get one at some point.


I doubt that will be much of a problem. Even though they did interview my parents, they also put me through the same questionnaires, and asked me to answer from what I remember of myself as a kid. If my parents weren't able or willing to be interviewed, I'm rather sure they'd just have made their conclusion from what I remembered. Could be that varies from specialist to specialist (and location to location), but it should still be possible.



AnAspie
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07 Aug 2011, 1:07 am

I am going through it now, It took a Divorce and losing contact with my 2 small kids, one of whom has Aspergers to trigger an answer for why I was doing what I was doing. I believe the answer was I had Aspergers. Started researching, Started reading, started testing and yes I found my answer. Only a month or so away from my discovery , the first week or so was incredible joy, peace, tears and forgiveness and almost a "high" with the discovery, then came the sadness and depression at a Life lived with many sad moments and Fear. I have started counseling again this time with I believe finally with a proper diagnosis. Aspergers. I am grateful for this forum and simply typing my thoughts feels wonderful and I will continue to post updates on my progress. I have lived a good life and adapted with the disability, the new information can only be a positive moving forward.