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

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I am 53 years old now and received my diagnosis only a few years ago after a life full of frustration and anger for
never being understood and never really knowing what made me so different from other people. Where I live
Asperger's Syndrome is not very well known, though awareness has been growing over the last decade or so.
People here still believe it is mostly a childhood disorder, and even more do not really believe it is an actual
condition. I see a lot of references to psychopathy and many shun Aspies.

In spite of all this the diagnosis has caused a profound difference in my life.
I had to pay for the assessment myself, and even so former faulty diagnoses will not be recanted and they still figure
in my papers. I am not being treated that differently from how I was treated before I was diagnosed. The authorities
still in their hearts believe Asperger's is nothing more than a fancy whim and that they can't possibly be wrong.

The greatest difference is in me and my self understanding. I can hardly put it into words, but I will try and list
a few things:

# Now the world finally acknowledges that I exist.
# Now I have a name for what makes me different from the neurotypical majority.
# Both I and my surroundings have had a multitude of misconceptions about me and what I am, whereas now only
my surroundings persist in this regard, but I can live with it because I myself know much more about the 'truth'.
# Now I know there is nothing "wrong with me", I am not a monster but a human being (I don't see Asperger's as
an illness or even a disorder).
# Now I have resources I can reference and consult, mainly on the Internet but also in books if I want to.
# I no longer am completely alone, for there are others who exhibit the same types of differences and character traits.
# I now know there are people with whom I can communicate and be understood. I have a community.
# My new found self understanding has given me confidence, and it shows in my daily interactions with non-aspies.
I receive more respect, am being less ignored or walked over, and I am convinced the reason is that I have awareness,
where before I only had my personal conviction of being a good person. I now have it on paper, so to speak.
# Having the diagnosis can prove vital in the future because of the danger of being mistaken for a psychopath... A real
danger to someone who has been marginalized since birth, who have never enjoyed the safety and support in having
a family, and who have therefore had issues with the authorities in my youth.


Should you seek a diagnosis?

I think this is a question only you can answer. But it is wise of you to ask how others think and about how our experiences
with being diagnosed with Asperger's Syndrome are.

Generally speaking I would say that if you have a functioning life, if you do not need medication, and if you are not in a
situation that requires of you that you provide 'proof' about having Asperger's Syndrome, then don't get diagnosed.

As much good diagnosis can do for a person, they are still labels. They set you apart, and make no mistake: No diagnosis
sets you apart in a positive way. Normalcy rules. It can be an asset to have some quirks of character, but only for as far as
those differences and quirks are extensions of being 'normal' in the eyes of your surroundings.

It is easy to get the feeling that having an Asperger's diagnosis doesn't really make you different when we view it in context
of a forum such as WrongPlanet, where everybody are aspies or are tolerant and positive toward the unusual or different.
But this is still a minority, and the Planet in general will not find you less 'Wrong' if you have an Asperger's Diagnosis. You
risk the opposite result.

I give two reasons to get diagnosed. 1. You need the diagnosis for legal, medical, i.e., purposes. Or 2. You need it for your
own sense of self and being "real" or acknowledged. Both reasons are equally valid, but the decision should not be made
lightly.

I wish you the very best of luck ahead, and I'm confident you'll make the right decision!

I got dx'ed when I was 38, and am now 50. AS kids of today are fortunate, as when I was a kid I was repeatedly blamed and shamed for being the way as was, and hence had no self esteem. I had no idea I actually had a neurological difference.

Not sure if it was on or off the record (not sure what that means). The first psych wrote in her notes "AS/autism". The one I had after that (I had to change due to insurance changes) concurred with the dx.

In many ways it helped.
1) It helped me realize I wasn't inferior or shameful, I was just made differently.
2) It helped my mom and my other relatives understand why I was different. I really helped them understand me better, and why I did some of the things I did as a child.
3) It helped me understand my specific limitations and how to compensate for them.

In one way, it didn't help, in that I realize I will never be able to fully function socially and interpersonally the way I would like to. That makes me sad.

im 38 and had a social worker suggest i might have it about 12 months ago at which point i had never even heard of aspergers, i was officially diagnosed 2 weeks ago so this thread is useful seeing if it has helped people.

Im still not sure what good will come of knowing for certain but the psychologist who did diagnose me seems to know what he is talking about and has helped suggest a couple of social interactions i could do differently

I sought out a dx at 31. I have a full time job and positive job reviews. I had heard the whole "if your life is okay don't bother argument" but it didn't work for me. I haven't shared the info with work yet BUT now it is my choice if I choose to share the information or not. When I only had a self dx I couldn't tell work even if I felt I needed to. I needed the confirmation. I belong to a AS women's group and felt that if anyone "found out" I was a member and I didn't have a dx it could jeapordize my job. I'm in Canada and the dx does provide protection if I find myself the victim of discrimination so I decided that I should seek the dx when everything was going well so that if I did have problems later in my career it wouldn't look like I was just fishing for a dx. That said, the dx I think has improved work because speaking with professionals through the dx process has helped me become more self aware which has made me a better employee. I also cut myself more slack because knowing for sure that I do have AS makes it easier to accept some of my challenges. I also feel that the dx is making it easier to seek out help (help I'll pay for or perhaps my insurance will pay part of but still help I need and wouldn't otherwise know how to access).

I was diagnosed 2 weeks ago and at first it was like a weight off my shoulders. Then came a grieving period, where I am now. Here I recognise that what I want and expected to be will never happen. I am particularly disabled by it but am highly intelligent and very articulate. It makes it very hard to be taken seriously, especially by my family who haven't talked about it since I told them.

The reason I was assessed was because it was so disabling for me. It took me7 years to persuade someone to assess me as they had me locked in a mental health diagnosis and noone listens to the mad lady who claims she isn't mad!

I'm not an expert by any stretch of the imagination but what I do see is that many people who display very normal social difficulties often look for a reason, beyond, people are confusing and getting on with them is hard. I can't tell from what you wrote whether you are on the spectrum or not but your doc was right. You need to ask what do you hope to gain from a diagnosis?

For me it's the support I require to function in simple day to day tasks. It's removing a completely unsuitable mental health label. It's a reason to understand my rather huge social failings throughout my life, e.g. I've never had a job I wasnt fired from because i didn't quite fit in.

If I functioned on a normal level, I wouldn't have bothered with dx at all, I'd accept my differences and get on with life. But I didn't function at all. My entire adulthood to date was one huge meltdown trying to fit in, cope and lie about who I was to keep others happy. I couldn't 'fake it' even if I thought I could.

In the end noone can answer that all important question for you and for you to return to your GP with the answers others have provided means you're not being true to yourself and you're giving your GP our reasons, not your own.

The dx process is long, painful and exhausting. Not something totake on lightly. You need to know why you want or need it before putting yourself through it.

Original poster:

I would love to have an 'official' diagnosis - but it probably isn't for the same reason(s) as most other folks...

I do think it is too late for an official diagnosis to help me, but I have searched for the last half of my life for an 'answer', and I am virtually certain that I found it. The explanations I have found for some of my behavior, and especially the behavior of others towards me, has been a relief and also a terrible frustration.

With the exception of personal success, happiness, and friends - I pulled off 'the NT act' a little too good sometimes. As a result, the few people still close to me do not seem to be interested or engaged in what the diagnosis means to me. If they even believe me when I tell them I am AS, they don't care enough to do the research and figure out the implications of what I am trying to tell them.

For me, when I figured it all out, I had hoped the diagnosis would sort of serve as an 'apology' to my family, and an explanation to my friends - but alas, we ask too much of the NTs if we ask them to learn or to care about something so different from their lives and goals. My parents just brushed it off rather than study the implications of what AS might have done to interfere with my relationships and progress in life.

Lastly, I have always been known as a 'braniac', but failed miserably in life in the money-making department, much to the glee of some of my ex-friends who probably must have felt their knowledge inferior until all of them started beating me in women, possessions, jobs, money - well, everything that my intense social anxiety kept me away from...
-- At this point, I am just a 'loser' to most people I have known,
So I would like an official diagnosis to finally prove I'm not nuts, and prove I'm not a loser.

Ironically, my self-diagnosis proves that I am nuts and a loser to most people that know me!!

Life is so damn sad I can hardly bear it 90% of the time....

I was diagnosed in May this year, 4 months ago, at the age of 50.

Situtation was that essentially I was getting bullied a lot at work more and more through the performance management system, which clearly was written by NTs for NTs.

Now I have a diagnosis, I have access to wealth of advantages, including protection under the Equality Act 2010 (I live in the UK). Additionally I have access to a Workplace Assessment, reasonable adjustments by my employer, workplace training, Cognitive Behavioural Therapy, National Autistic Society as an Aspie, my local Autistic Society as an Aspie ...... I can now say I am an Aspie, not I may be an Aspie.

When I got my diagnosis I went through (am still going through) a stage of part denial/part acceptance. Is the diagnosis correct? Which bit of me is Aspie (answer all of me)? Which of my characteristics are due to Aspergers? Maybe I have a special case of Aspergers which doesn't actually have any effect on me as a person (not possible)?

Just look for the points where you have difficulties, a lot of that will be Aspie, where you can't do something but you can't explain why.

If you are certain that you are an Aspie, then maybe a diagnosis will not change your self perception. However what you will get from a diagnosis is legally recognised status which will protect your employment. Given that you have moved jobs because of your Aspergers, perhaps this would be helpful to you.

It didn't really change anything for me in the long run. The first year or two was a discovery process that was kind of exciting. The puzzle came together and I understood why I act the way I do. But in the long run, it has not really impacted my life either way.

I am 46 and was diagnosed several months ago.
It was a relief to know that there was an explanation for why I am the way I am. I experienced constant depression, anxiety, and anger over my inability to interact in groups of people or comprehend abstract concepts such as religion. I was constantly accused of being a bad Christian, selfish, living in my own world, and inattentive due to the lack of eye contact.
Now that I know I realize a peace and acceptance of myself. I experience God in my own, unique way. I don't have to agonize over not understanding abstract ideas inherent in Christianity. I really do live in my own, unique world that no one else comprehends. Even though I don't make eye contact with people doesn't mean I'm not listening. I am now comfortable with my own, unique way of thinking.
I don't consider Asperger's to be a disorder but, rather it enhances my life. I am able to be social in a limited manner, but I am more of an observer of human interactions.
I live in the United States right in Bible Belt country. Unlike you more fortunate people living in the UK, Americans tend to be less accepting of those who are different. You have to be careful of who you share your diagnosis. There are many conservative Christians here in the Midwest, and they often associate mental disorders and autism to Satanic influence or even demonic possession. I reject such notions. However, I used to believe that so I lived in constant fear and anxiety.
I live independently, am married and have four children. I have a profession and possess above average intelligence. I have my many quirks, eccentricities, and sensory issues. However, I am much more accepting of these because they make much more sense.

I was diagnosed a year and a half ago. I'm 33 or 34. Being diagnosed and taking medication has changed and is changing my life. For the first time in my life I feel normal. My whole life I've been a screw up. Achieving to a certain degree, then failing and not being able to recover. Now I have real hope and potential . Yes it has changed my life.

I haven't been formally diagnosed. I still have frustrations that have followed me pretty much my whole life. I only discovered AS after my kid was DXd with it. Did a lot of reading up on it & realized that the more I discovered about it, the more it fit me.

I'm 49 & basically looking for a DX for validation (ah this is why I am the way I am, there's a name for what I have experienced, & I'm NOT crazy!) & peace of mind. I hate trying to force myself into a box where I clearly do not fit (square peg/round hole syndrome). I'm tired of making excuses, & tired of living with anxiety knowing that there's another bully out there in jobland, who can't wait to make me miserable. Normal people just do not understand the stress of living with sensory issues, anxiety, attention problems, being harassed/bullied, etc.

For me, the best things about learning I was an Aspie are:

1 - I'm not broken and don't need to be fixed. I'm just wired differently from most.
2 - Others can now understand that I act the way I am (especially socially) because I can't act differently. They realize I am not "anti-social" or aloof.
3 - By being able to define aspects of my behavior & personality, I'm now able to better cope and devise strategies to help me in my interactions with others.
4 - I can now work on maximizing my strengths, and not waste time trying to fix things that can't be fixed.

Above all, it was just a relief to be able to define who/what I am, other than weird, strange, etc. And it has helped with family & friends being able to understand me more and accept me for who I am.

Hi I just wanted to say how helpful this thread has been to me. It was the question on my mind when I signed up today and there are so many great answers here.

I totally feel this way too! A lot of aspie traits seem so normal to me. So how can it be a "syndrome" or "disorder?"

I was diagnosed with ADD a few years ago and I'm also dealing with a lifetime of chronic depression. I think I've gone as far as I can go with that dx, and I keep coming back to Asperger's. I know things could be better, but I'm just not equipped to figure it all out on my own. I just don't have the energy anymore. So it's nice to know there's hope..

Puzelle above said "I give two reasons to get diagnosed. 1. You need the diagnosis for legal, medical, i.e., purposes. Or 2. You need it for your own sense of self and being "real" or acknowledged. Both reasons are equally valid, but the decision should not be made lightly. "

She nailed it. Especially if you work for the federal government, with that preponderance of clique-ish, petty NTs, a diagnosis is essential for reasonable accommodation. While Aspereger's per se is not a targeted disability, there is on the Job Accommodation Network (JAN) out of WVU - used by most federal agencies - specific accommodation profiles for Asperger's. You might want to weigh any advantage against the penalty of being labeled - don't make it lightly.

And i no longer worry about wearing watches - i understand why i don't like watches and socks and at 60+. i just don't feel that need to conform. Lots of little things no longer make me feel guilty, and i truly understand why i didn't take advantage of that great deal on a Rolex.

I was just diagnosed a few weeks ago. I'm actually torn: I'm glad that there is an all-encompassing explanation for the problems I've had all my life but I'm also very embarrassed about it. I worry that people will think that I'm making it up for some reason.

It has helped me, my therapist, and my psychiatrist get a better grasp on the complex issues I'm having. Frankly, I don't care what label I have as long as it helps me get back on my feet and back in grad school.

...so why am I so ashamed of this one?

Dear happydorkgirl, thank you for posting your recent experience and feelings.

There is nothing to feel ashamed about, but for me the difficulties were to know what to do with the diagnosis, and who to tell, how, why and when.

I did find it very very helpful to contact my local Autistic Society who provided me with an understanding environment, someone to talk things over with, and best of all access to coffee mornings to meet with other carers, professionals and ASD people. Acceptance and inclusion are immensely helpful.