Late in life diagnosis...Did it change your life?

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My life has drastically changed since being diagnosed. I'm a new person I feel like. Believe it or not, I'm actually more relaxed in social situations than I was before. Now I know that no matter what I do, I'm going to feel awkward. I stopped trying to shed my awkward nature and have embraced it. Oddly enough, I think this has made me better to be around. I'm saying this because people have literally told me several times that I've changed for the better. They don't know why, but I do. I don't beat myself up over social faux pauxs anymore and I just try to enjoy my own company as much as possible. Not to say I'm less awkward...I'm still super awkward around people, I just try to make it work for me now.

So I want to know if it has changed anyone elses life for the better or maybe even worse. How did it affect you and how did you handle it? Did you tell people, or did you hide it? Did you become obsessed with it or did you not really care so much? Or were you just midly interested? (if such a thing is possible for us. For me, it's obsessed or no interest whatsoever.)

It's been two years since i discovered I was on the spectrum. I am 47.
The process of accepting my formal diagnosis by a specialist in the field, has been mixed.

I have had periods of appalling depression, regret and anger because I found out so late in life.
I have also felt relief and sheer joy at times.

as time goes on, i do however feel easier on myself and less of a mystery. I have always liked who and what I am - as weird and troubled as I have been - and the diagnosis is helping me to understand that I am in the process of finding deep self-acceptance, which is all i have ever wanted in life. I can live with the fact I am odds with most people and that I live behind a strange and impenetrable glass screen IF i have self-acceptance.

Those who are late in life diagnosed will very likely understand the complexity of feelings that come with the diagnosis after so many years having already passed by.

Am i glad I know it is autism?
Yes.
Would I want to be anyone else?
No.

and I think I might die at peace with myself when the time comes...

*apparently this is adults only DX in life, deleted*

Last edited by Spokane_Girl on 02 Jan 2010, 1:42 pm, edited 1 time in total.

I found out when I was 32. It was really hard the first few months, not so much because of my own feelings about it, but because I thought that once I had the diagnosis, doctors and psychiatrists would be more helpful... so it was a bit of a downer to find out that they weren't.

Apart from that, 18 months on, I'd say I'm much happier in many respects. I've got an explanation for everything, other than just beating myself up by telling myself "I'm a weirdo" all the time.

The best thing for me has been the doors that the diagnosis has opened in getting help in education. I've started a college course, and am also studying a psychology degree from home, and I get loads of additional help and resources because I have Aspergers. I always wanted to finish my studies, but could never get it together before without that kind of assistance in place. So it's really helping me to move on in my life in that respect.

It's helped with relationships too. I didn't have much luck with them before, but now I know why I need a certain amount of space, and why "talking about things" sometimes isn't the best way of solving a problem (writing it down works better for me) - then it helps the other person understand me better.

I now routinely disclose my diagnosis to anyone I meet that I know I'm going to be working with or spending any amount of time with, and I feel like I'm doing something useful by trying to "educate" them about what it is. Mostly I get positive responses, but then I'm lucky I've got some good people around, and I guess because of the field I work in, people are willing to make more of an effort to understand.

Didn't change my life a single bit when I was diagnosed at 23 for that what I always was even if I didn't know about it before then and it fitted all I had lived until then. So for me the diagnosis is just a tool that give me trail to better explain the difficulty and how I come to function to other when I need to.

It helps, it's the starting pointing of understanding - but as long as you know we're all more than just simply a label or a category

I self-identified at 59, and I am now "okay" (no longer fearing insanity) amidst my misery.

I told my employer, a family, and they have been (and continue to be) extremely accomodating and supportive. I told my father, brothers and daughters, and I have not heard a word about it from any of them since. My wife and two of our friends understand and are supportive.



To a point, but more like addicted to fellowship here on WP! I had hoped to learn enough to help my daughters understand, but now it looks like I will only ever be known to them as their "crazy dad".

I have had two lifechanging events in my life that I recognized my situation in a staggeringly profound "moment of clarity". One was when I realized I was an alcoholic (26 years sober) at 33, and the other when I realized I had always been Asperger's Syndrome autistic at 56 (diagnosed at 58 ).

The week before I heard about AS I was skipping down the hall at work thinking about how the other older ladies mostly shined me on when I came up to talk with them and (at 56) wondered if I was ever going to actually 'grow up' and be an adult like I saw those ladies were. A week later I was frightened that other people might "find out" I was autistic. A wonderful man named Roger N. Meyers told me not to worry, "they" probably already knew 'something was up' with me.

In the three years since realizing my autism, I have relaxed in social situations, learned to be a nice social person to people in one to three minute bursts instead of drawing it out too long and having my 'differences' be the focal point, rather than the warm fuzzies they get if I just hit and run. . I have learned to cultivate relationships, and be loving and forgiving for those few moments with each one I meet, because that is something I can do.

I think about what I could have accomplished had I been born when it was a known issue, and got early intervention, understanding parents and an enlightened school system, but not very often, because it can get me all feeling sorry for myself. I have had a totally unique life and would not have had I not been myself, a free range Aspie.

Merle

Last edited by sinsboldly on 02 Jan 2010, 3:40 pm, edited 1 time in total.

That happened for me at 31, and the experience of the years following has played a huge part in helping me identify and "validate" as an Aspie. As you would know, Merle, the Steps address every possible matter of character any human being could ever have ... and now I understand why my life still remained such a challenge.

I truly didn't think having a formal dx would make a difference. I was wrong. I figured no matter how the results came back I was still the same old me. Ha!

The fact of the matter is that I learned I am an Aspie (at 34) and then my entire life was replayed in my head, only this time I saw everything through a new set of eyes: my autistic eyes. Wow. I could see so many instances of being taken advantage of, of misunderstanding, of awkwardness, etc. It was really very sad for me.

Unlike others, I have found that having this dx has opened up a whole new world of doctors and services and I think it's great to finally feel like someone is working with and for me.

I have as AS dx as does my husband and our eldest daughter. (We have one other daughter.) I enrolled our family in a genetics in autism study at McMaster University in Hamilton, ON, Canada. Here we learned that our youngest is not on the spectrum, but that she does have a lot of sensory issues (which I already knew), and my AS diagnosis was changed to PDD-NOS.

This has sent me for another loop. I have as yet to do more reading on it (previously all my research was on Aspergers), but my first reaction was that I must appear even more bizarre to people than I had thought. I hadn't felt really comfortable with calling myself autistic when I was dealing with Aspergers, but since hearing PDD-NOS, I am embracing autistic/autist more and more.

Had I known earlier in life (I had been identified as gifted at 11, but not autistic), I probably would not have gone on to have kids. And had we learned of our eldest's autism earlier, we probably would not have gone on to have a second child. I do have reservations about how life will be for our youngest given that she is the only one of us all who is not autistic. She'll have a unique perspective on life, that's for sure! But I am glad we had her. She's an awesome human! They both are.

In summation: Did it change my life? Absolutely. Would I liked to have known sooner? Yes, indeed. Maybe I wouldn't be a university drop-out had I had supports.

I am still in the process of understanding all of this. Last summer I went to see a therapist for one thing and ended up having her ask me if I knew anything about Aspergers, as it seemed to her that it was more than fitting as a diagnosis. A short while later I had to go see someone else who was rather pleased to have sitting before her who was, as she said; "The second, obviously, adult with Aspergers that she has run into." I was amused that I was so obviously something that I had not been diagnosed with for 32 years. It is not like I have not seen enough psychologists over the years...

Did it change my life... yes? I think sometimes it is way too early on in this for me to answer that honestly, but the changes have already been severe. I have changed for the better, as I now have a starting point. I used to believe certain things to be truth, but now understand that I have a lot to rethink. Understanding... it is a good thing.

How did it affect me and how did I handle it... It hit me hard when I started to look into it. I saw words that summed me up perfectly. It messed with my head and finally things made sense. I found this place and was shocked that there were people out there who made sense. I do not know how I handled it. I think I might still be in shock over it. It is hard for me to say, and I will likely not fully understand this for some time.

Did I tell people or hide it... I told the people I deal with on a regular basis. Mostly that went fine enough. It was funny to me, my husband wanted to go out for coffee last week and we ran into an old friend of his. He was actually talking about the movie 'Adam' and talking of autism. Heh. I busted out with my diagnosis and he did not seem the least bit surprised. So it seems I am not out to keep this a secret. I tend to just tell my business all over the place anyhow. Why would this be any different...

Was I obsessed with it... I suppose I was and still am. I researched like crazy for a few weeks and finally landed here and while I might not post with great frequency, I do lurk like a madman.

I figured out I had AS back in 2006 when I was 24. I didn't know anything about the autism spectrum. I heard a brief description of AS on a tv show and it struck a chord. I began reading anything and everything I could about AS. I have always been "quirky", however, that isn't unusual in my family so nothing came of it, I "marched to a different drummer" as my mother put it, and it was accepted.

The diagnosis has lifted a weight off of me, I no longer beat myself up over the vast differences I saw/see between myself and everyone around me. I have an understanding as to why things were the way they were. I am becoming aware that my many habits and/or sensitivities are explained by AS and it is comforting to know.

I haven't divulged to anyone that I have AS, though I sought a professional dx this past year as a means of support for when/if I ever choose to let people know. I think it will be hard for people to accept because I have done a decent job of suppressing all my tendencies. My life probably won't begin to change until I choose to live my life openly.

and it happened to me when I was 36. (now sober and clean 12 years and known ASD with dx for two.) and then in 2008 when I first realised I was AS.
Thanks Merle. I loved reading your post.

ANd while 12 step programs have some flaws, I can honestly say the small group I attend in my little country town in the "alternative region" in Australia is forgiving, embracing and caring. The past year, some of those people have carried me through one of the toughest times in my life since getting clean. I have a group that laughs endearingly at my bluntness and also forgives me for the clueless conflicts I get into. They have helped me through, so very much. We are an NA group of misfits.... Two of us are on the spectrum - and another is ADHD. There are a few others.

The formalised nature of teh 12 step group is also really suited to me as an ASD person. I know the format, i know the structure, I know the content of what gets discussed, i know it is a narrow and limited style of communication (self-growth and self-help and recovery) and I have learned the rules of this style of communication. I can fit in here. Not with everyone. BUt with some.
And it is a gift to have met another AS woman in a 12 step program. THAT has been an incredible experience of identification.


I do wonder about being diagnosed in infancy or childhood, like my relative. BUt then, that also comes with a whole host of complexities and so I suppose it all balances out in the end. Being "labelled" so early may well be just as difficult.
More than having a label early, i wonder what it would have been like to grow up in a family where my mother was not struggling appallingly with her own ASD issues and with 8 children. I wonder what it might have been like to grow up in a family with more active understanding and acceptance and even identification of my differences. So much that was quite strange in my family compared to others in the neighbourhood, was simply treated as standard. THere was a lot that was very odd in both neglectful and wonderful ways. By the time I left school I had no life skills, no help, no understanding of the world out there.

What is really rough for many who are older aspies is that we often had the autism "beaten and criticised" constantly by close caregivers who did not understand about the spectrum back then. That is a great shame

Lamb to the slaughter.......

I am self-diagnosed, at this point. It has been about 2 years since the lightbulb went on. I don't remember what the inciting event was, talking an aspie test online, testing in range. Thinking it was a fluke, then continuing to be consistently in range. Then came the reading, reading, reading. I was around 38, I think when I found out about aspergers. I had been diagnosed with everything under the sun...although I always felt the shrinks were a bit befuddled, I was never quite 'crazy' enough to their liking. Most of my sponsors in the program have been MSW (social workers), and I would tell them the latest dx and they would roll their eyes. I hesitate to post this but I had a tremendous amount of anger and grief when I figured out my problem was neurological not psychological. I still feel grief for the tremendous amount of misplaced energy trying to improve in areas in which I will never have mastery. That time can't be gotten back. I had fury at the program in particular. They couldn't fix me, no matter how much I 'kept coming back'. I relapsed recently and have about 90 days clean. When I figured it out, I understood the disconnect I felt, how doing the social things I was recommended to do in AA made me want to use instead of abstain...I have misgivings with 12 step still. I don't think they address core issues like should be done, as the program and knowledge evolves. The wisest thing I've ever heard anyone say is that 'every alcoholic has a second problem, and you need to go find out what your second problem is'. Simplistic, but so true. I think 12 step chemical dependency groups probably have a disproportionate amount of personality disorder folks in them. Many of us have a more serious core addiction going on underneath the chemicals. This time around (words I thought I would never be saying) that is where my focus will be. I can't stand the rote speech of the program sometimes. People spewing cant instead of how they really feel. They could be dying inside, and they would be just talking slogans. Because they have a lot of time built up, and that is what is expected of them. And the next day, they are dead, from suicide, or overdose. I have seen it so many times. I relapsed the first time at almost ten years. I was struggling in areas of employment, as usual. I mentioned to my sponsor about dating and she looked at me and said "what do you have to offer anyone?". And I thought, I've been doing this for ten freaking years and your telling me I don't have anything to offer anyone? What's the point...so I used. Lots of other stuff was going on, that contributed...and the growing sense of desperation, of why am I not getting better, no matter how many steps I work, etc.

I guess finding out about this has reframed everything in my life. I feel completely lost, honestly. I know it will pass, and I will get on my feet again eventually. Right now I am just sad that the vast majority of my adult life I focused on improving in areas where there absolutely was no hope for improvement. At least now I *know* what is wrong with me. I am accepting that I will probably have to work two jobs for the next twenty years because I will always be underemployed because rote work and manual labor are all I can handle. That I will never be able to manipulate my way into a high salary like I watch other people do everyday..that I will never be promoted. That I probably won't be able to complete a degree because dealing with schoolmates is excruciating for me and just about sends me over the edge. The one certification I've gotten has been online, so that is an avenue. Sorry if this reads as self-pity, I am just 'right there' in the awareness and revelations at the moment. I am just in the feelings and grief. So I guess the answer to the question is it changed my life, definitely, in every way, some good, some painful. It's helpful to know what the true problem is though.

diagnosed recently, in my mid-40s.

yes, it has been life-changing. my focus has completely changed. I'm not down on myself all the time for not "getting" it.

I also reviewed my whole life from a new perspective and so much of it made sense that never did. I forgave myself for not being able to protect myself from abusive people, which is probably the single most important thing that my diagnosis contributed toward.

I'm moving beyond what others expect from me and figuring out what I want from myself and how to get it. it feels like chaos most days, but chaos with more purpose.

some sort of religious belief instilled in me as a child gave me hope that someday I would sit on a big daddy God's lap and I would be told the great mystery of my existance.

Hearing a chance segment of "All Things Considered" about Asperger's traits on my way to work one mediocre moment became the turning point I have always been waiting for. I feel like I have already had my little chat with God.

Merle