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

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MollyMolly
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10 Oct 2011, 12:08 pm

I am new here, and older in my 40s.

I was "diagnosed" with Aspergers by a therapist, not sure if it was "official" she wanted the psychologist to test me but state didnt want to pay since I was already on disability for physical conditions. The diagnosis however has been backed up by a recent and second therapist.

I felt it blew open the door to understanding my life and how it went the way it did. The lack of communication with people, feeling like I was talking through a glass wall, getting lost in NT conversations.

I do grieve over it sometimes thinking of what I suffered because all my differences were not understood. Aspergers for me seems to be getting worse with age.



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10 Oct 2011, 1:19 pm

happydorkgirl wrote:
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?


I plan on getting a diagnosis soon too, after about 6 months of debating. I'm 99% sure that I have AS, so I'm just gonna do it to make it official. Not sure why, but I've already had that feeling of embarrasment too at times. Being a bit older and finding out, and having an abrupt change in perception probably has something to do with it. Only a few trusted people know I have it, and I've debated whether I will tell friends and more distant family about it, just because I don't want people to treat me differently. I guess I feel "normal" enough to just keep things the way they are. Btw, hello from Southern Wisconsin :)



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10 Oct 2011, 1:36 pm

I was diagnosed a year ago, at the age of 48. I only got the diagnosis when I visited a psychologist for other reasons (depression, marital problems). I have known for some time that I have AS (I work in the medical field, in the neurosciences, and I was just about certain even before I was diagnosed). I don't really think it's done much in the way of providing me with any tangible benefits, but it has helped me with peace of mind. I know what my "issue" underlying the difficulties I've had over a lifetime is now, and it helps me to be less anxious about it. I probably would not have sought the diagnosis on its own, but I'm glad I have it now.

BTW, OP, your post rings very true to my experience (having a job, being able to "fake it" but then having people expect so much of you once you get good at it, etc).

~Kate


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itsnot42itsas
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10 Oct 2011, 4:56 pm

I'm recently suspected AS (by myself), but this thread gives me serious doubts. Despite ticking almost all the on-line test boxes, and having lots of lifetime AS traits that aren't part of the diagnostic criteria, I haven't experienced all these life problems. If I am AS, I've been very lucky with employment, marriage and children.

My wife deals with anything remotely associated with socialising, I go along with it all, and everyone knows I'm a bit odd. No-one cares if I sit and read a (non-fiction) book when we visit family. When my father-in-law sheepishly calls me eccentric, I just say, thank you, I'd be disappointed if you didn't think I was. I do get extremely tired after social encounters and if my wife wasn't going for support I'd stay at home. I guess 30+ years of very happy marriage must mean she must be very understanding. I haven't discussed AS with her at all yet - I doubt she knows what it is - and I doubt her behaviour will change if I tell her I'm officially Dx. I can think of dozens of situations where, with hindsight, I've been less than sympathetic, sometimes rude and uncaring, and I've consistently failed to spot her impending rage over something I'm not doing, until it's arrived and she's screaming at me. I shrug my shoulders and she gets over it.

I'd like a diagnosis for validation. Maybe I should think this over for a while because it just doesn't seem as profound as everyone is saying. I'm already feeling a sense of understanding and relief anyway, so even if I'm not quite there for AS I know in my mind I've as good as got my answers. I think I'll carry on as I was. Professional and work encounters I'm ok with anyway, I've always just launched straight into business without any tedious small talk. Actually I thought that was how everybody did it.



indiana
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11 Oct 2011, 8:25 am

I got my diagnosis last year. I was well past my retirement age but I also wanted it for validation. It has helped enormously. I feel as though I'm no longer carrying a burden and I'm not uniquely 'odd' since there are so many other people with similar 'oddities'.

But I've found it disturbing that a number of people on the spectrum (or with autistic children) take the line that many (most?) adult diagnoses for AS are not genuine because the definitions of autism/AS have been widened too much and people not really on the spectrum are being wrongly included under the autism umbrella. They also cast doubt on how carefully diagnoses for adults are carried out.

Since the board where this happens is a UK one I think some of the concern is that the available money in the NHS will be spend on people who have managed to live a relatively normal life at the expense of those who are lower on the spectrum. Also, that those in work shouldn't attempt to get special treatment since this may affect the employment prospects of young autistics coming on to the job market.

Has anyone else here experienced this?



Wayne
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11 Oct 2011, 9:53 am

itsnot42itsas wrote:
I'm recently suspected AS (by myself), but this thread gives me serious doubts. Despite ticking almost all the on-line test boxes, and having lots of lifetime AS traits that aren't part of the diagnostic criteria, I haven't experienced all these life problems. If I am AS, I've been very lucky with employment, marriage and children.

My wife deals with anything remotely associated with socialising, I go along with it all, and everyone knows I'm a bit odd. No-one cares if I sit and read a (non-fiction) book when we visit family. When my father-in-law sheepishly calls me eccentric, I just say, thank you, I'd be disappointed if you didn't think I was. I do get extremely tired after social encounters and if my wife wasn't going for support I'd stay at home. I guess 30+ years of very happy marriage must mean she must be very understanding. I haven't discussed AS with her at all yet - I doubt she knows what it is - and I doubt her behaviour will change if I tell her I'm officially Dx. I can think of dozens of situations where, with hindsight, I've been less than sympathetic, sometimes rude and uncaring, and I've consistently failed to spot her impending rage over something I'm not doing, until it's arrived and she's screaming at me. I shrug my shoulders and she gets over it.

I'd like a diagnosis for validation. Maybe I should think this over for a while because it just doesn't seem as profound as everyone is saying. I'm already feeling a sense of understanding and relief anyway, so even if I'm not quite there for AS I know in my mind I've as good as got my answers. I think I'll carry on as I was. Professional and work encounters I'm ok with anyway, I've always just launched straight into business without any tedious small talk. Actually I thought that was how everybody did it.


From what you've written, I think it's likely that you are on the spectrum. I also think that you are extraordinarily fortunate and have an extremely understanding spouse. You should ask yourself how well you are taking care of her... she is taking very good care of you, and you'll need to give back in some meaningful way if you want her to keep doing that indefinitely.



barnabear
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11 Oct 2011, 10:45 am

indiana wrote:
But I've found it disturbing that a number of people on the spectrum (or with autistic children) take the line that many (most?) adult diagnoses for AS are not genuine because the definitions of autism/AS have been widened too much and people not really on the spectrum are being wrongly included under the autism umbrella. They also cast doubt on how carefully diagnoses for adults are carried out.

Since the board where this happens is a UK one I think some of the concern is that the available money in the NHS will be spend on people who have managed to live a relatively normal life at the expense of those who are lower on the spectrum. Also, that those in work shouldn't attempt to get special treatment since this may affect the employment prospects of young autistics coming on to the job market.

Has anyone else here experienced this?


Well, we know that Asperger is a heritable condition, and that for adults the most common diagnosis pathway is that they get a referral for diagnosis after their child is diagnosed. If they are then diagnosed Aspergers which is "not genuine", how have their children managed to inherit it?

The argument that those in work shouldn't attempt to get special treatment seems to be an ageist one to me, and would be contrary to the Equality Act 2010. All Aspies should be protected, regardless of age.

Furthermore, why should those already in a job not be entitled to reasonable adjustments, for example to stop them being bullied out? This is my situation right now. I have written a robust reasonable adjustments document that should protect me, I just need to get this agreed, then maybe in a while I can relax a bit and actually do my job.

Aspergers is a stable condition, so if I am diagnosed as an adult then I had Aspergers as a child. The mere fact that Aspergers was not a diagnosable condition in the 1960's is not my fault.

If people think that Aspergers is over diagnosed in adults, they should compare the diagnosis rates between adults and children. Diagnostic processes are more developed and applied in children, but that does not mean that too many adults are being diagnosed. Diagnostic rates are much lower in adults than children.

Aspergers isn't the problem, ignorance and intolerance is.



dreamatron
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11 Oct 2011, 1:55 pm

barnabear wrote:
Aspergers isn't the problem, ignorance and intolerance is.


hear, hear



Country_Girl_Canada
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11 Oct 2011, 5:32 pm

I agree that anyone arguing that adults are being overdiagnosed is insane. Adults were not dx as children because there was no understanding of AS when we were children. Often within communities people try to exclude others. Hopefully the ASD community doesn't go down this path. We all need accommodations and funding, etc. The reality is that wise people in gov't would provide support to those already employed because I cannot tell you how many adults I have in my circle who were employed but now aren't and are in some way needing social assistance because they weren't accommodated. So economically providing accommodations to those in the job world is logical. As for it hurting younger aspies, it is only with more understanding that younger aspies will have a better time than older aspies have and I do see us being on that route. So we needn't fight about who deserves what, we need to recognize that there are diverse and equally significant needs. My one gripe in Canada is that very few supports are available for adults as compared to children. So really if anyone is going to get 'the most' in terms of dollars spent over their lifetime it is younger aspies because the gov't already spends way more on them as children and by the time they are adults our hard fought for accommodations/funding, etc as adults will be extended to them.



PitmanGeek
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12 Oct 2011, 2:53 pm

My diagnosis came about two years ago and it has had both positive and negative impacts. The negative that has affected me the most is that my wife uses it as an excuse whenever we see things differently or have disagreements. She also has a tendency to only see the things that support the diagnosis... potentially overlooking the positive traits.



finallyFoundOutWhy
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24 Feb 2012, 6:13 pm

As my signature says, i was diagnosed in 2010 at age 45.

Having the diagnosis made a huge personal difference for me.

it was incredibly freeing. I no longer had to live up to my parents' overachiever expectations for me. i no longer had to live up to the expectations of grade school and high school teachers who told me that i was lazy or just not applying myself hard enough or well enough.

it was liberating to say "You are wrong in your estimation of me, you are wrong in your assumptions about my life. I don't have to listen to you anymore."

even in my 40s they were always there whispering their doubts and my failure to live up to their standards (which moved every time i achieved what they wanted me to achieve - it was never good enough).

so, maybe your family is not as dysfunctional as mine, but in my case i felt free for the first time. i could be me and could tell anyone who wanted more than who i am to just go to hell.

a lifetime of self-doubt

as said previously:

ictus75 wrote:
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.


animalcrackers wrote:
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).


for me - i could always live with me

i liked me

others always gave me a hard time

now i can tell them to get stuffed - both in memory and in real life

----

i am extremely high functioning. it took several months of testing and some thousands of dollars to get the diagnosis.

the team that worked with me knew there was something there because i laid out a full self-analysis and diagnosis on walking in. their initial testing showed something going on, but it took awhile and some specialised testing to get around all the compensation i have built up over my life

the team was surprised at how severe the testing showed my asperger's to be because i am so high functioning

----

my family has been sh***y and in denial - even though my nephew is diagnosed, my father and 2 siblings refuse to believe they may have asperger's as well. my mother is starting to come around - she is an ex-nurse and worked in geriatrics - she is used to mental function evaluations - so i slip her individual diagnostic criteria regularly and she picks up on it.

my co-habitant fiance, who is a counsellor, has been absolutely a gem.

she almost overcompensates and tries to think in advance about things she can do to make my world easier - sometimes even if i haven't asked about or discussed an issue

she dotes on me (and me on her)

i am blessed to have her in my life


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24 Feb 2012, 10:03 pm

Before my diagnosis, I truly believed that everyone in the world thought like me, but their bizarre behaviors were inexplicable to me, so I thought that maybe I was one of the few sane people on Earth. Meanwhile, I did not actually know how I thought, my brain was like a blob that just did things. Afterwards, I gained a lot of clarity about how I thought, and what works for me and what doesn't, and how I should do things, like write a letter or plan my day or talk to someone, so I'm starting to fill in some of the skills that I never really picked up from others around me growing up, because they all thought and did things too differently from me for me to pick up skills from them that worked for me. I had to find my own methods, I guess.



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26 Feb 2012, 4:32 am

Great thread, guys.



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27 Feb 2012, 1:53 pm

It changed my life. I was diagnosed in 2006 after a lifetime of wondering if I were crazy or just plain weird. After my diagnosis I read everything I could get my hands on about AS, including this quote which has helped my self-esteem more than years of psychotherapy:
"Of crucial consequence is what un-, under-, and misdiagnosis in women mean in the lives of women who are AS and don't know it. One meaning is that they have no way of explaining themselves to themselves, thus no access to the support and positive sense of self they need. And, perhaps more important, more difficult, and more destructive than that, they accept the default explanations for the string of problems, setbacks, and oddities in their experiences and behavior: character weakness, resulting in a vague yet profoundly affecting belief in their own worthlessness."
-- Jean Kearns Miller, "Under-diagnosis in Women", Women From Another Planet?



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27 Feb 2012, 2:04 pm

latetotheparty wrote:
a diagnosis is essential for reasonable accommodation. ... You might want to weigh any advantage against the penalty of being labeled - don't make it lightly.


I made a "soft disclosure" info sheet to give my manager that focuses on the way AS potentially affects my work performance, without scaring them by explaining in gory detail all the ways my brain works differntly than theirs.

But with co-workers I've found a relatively safe middle ground: I jokingly refer to myself as a "nerd" when I feel the need to point out that I do certain things differently. Example: "Bob, I'm a nerd. I've always been downright dense about taking a hint. Are you trying to tell me something between-the-lines?"



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28 Feb 2012, 4:40 am

It's now 10 months since my diagnosis aged 50. I have already appended a couple of times to this thread.

However, since those appends I have found that opportunities have arisen because of my diagnosis that simply wouldn't have without.

Recently I was asked to give a 10 minute talk to the senior management team at Hampshire Autistic Society about my experiences with their outreach service. It is unlikely that I would even have used their outreach service without the diagnosis. The talk was well received and I found it helped me to move forward personally.

Also, I was asked to do a Q&A session for a group of 8 AS students from a local special school for Autism Spectrum Conditions visiting my employer. Having a diagnosis helped a lot in bridging the gap, and I was able to offer them encouragement for finding a career in my field.

This has extended to a possible ongoing outreach relationship with the special school.

Also I've found myself meeting many interesting and special people working in the areas of ASC''s or school outreach.

One thing leads to another and another ...