Would like to hear from Asperger adults 40+ Special Insights

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gonewild
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12 Aug 2013, 8:41 am

I'd like to hear from people who were diagnosed at a later stage of adult life, or began to suspect later in life that they had been misdiagnosed with mental disorders that did not adequately explain their symptoms. I'm finding myself (at 63) in a strange new world of reassessing my behavior and social interactions over a lifetime of being an undiagnosed female Asperger type and would appreciate help dealing with the cruelty, bullying, misunderstanding and misconceptions that seem to be the heart and soul of the social environment. So now I know that I am on the 'wrong planet' - what do I do about it?



peterd
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12 Aug 2013, 8:58 am

Well, I can share your amazement. As far as I can see, though, there aren't any up sides to late diagnosis. Sorry.

I'd like to live in a world where being autistic was OK, but the reality is that if you're past childhood no one has a clue what autistic ness means or looks like.

I just spent three days at an autism conference, as an example. I was just as completely left out in that circumstance as I have been for the rest of my life. If I'd been under thirty, there'd have been all the support I could wish for but I turn 61 this week. I don't exist.

One presenter spent here full thirty minutes pointing out, detail by detail, that no one had researched anything connected with adult autistics in any sort of professional manner. Yes, it supported my assumptions but it's hard to accept that all the rest of the world wants is for us to hurry up and die.

If you know a way off this planet, let me know. If you just want to speak to someone else who knows - well, I'm still here. I've been commenting irregularly here for more than a decade and I still haven't made anyone's acquaintance for real.



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12 Aug 2013, 9:04 am

Welcome to WP. Adult hfa (and even hfa in general) is like "chronic lyme", or mercury poisoning through amalgam tooth fillings. There are those who are adamantly pretending it is a myth. Even though science supports it. Even though studies have proved the validity. Even though independent tests and evaluations have given MORE than enough evidence.

Good luck and God bless


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jrjones9933
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12 Aug 2013, 9:06 am

I'm 44, and I was diagnosed a little over 2 years ago. Reading various posts around this site helped a lot, because even though my Psychologist provides excellent advice and insight, there are so many things that I have in common with people here that he wouldn't have enough time to mention them all.

I guess the main thing that I got from the diagnosis itself was that I started to feel like a decent person with perceptual difficulties, rather than someone who didn't care enough to perceive things. It still causes me problems, but I have a framework for understanding what I might overlook. That makes it easier to consider other people's feelings and calibrate my actions.

I also feel more comfortable giving myself space to relax and withdraw from situations that overstimulate me. Now, on the rare occasions when I feel overloaded, I can handle it more elegantly because I haven't had to dealt with such a high level of stress as often.

I had been diagnosed with mild depression, but I feel relieved to know that those feelings resulted from situations rather than from a chemical imbalance. Situations, I can manage on my own without pharmaceuticals.



gonewild
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12 Aug 2013, 10:07 am

Hello peterd, JrJones, and flanmaster:
I thought everyone knew that there are adults with Aspergers! Children do grow up - do people think they fall off the (flat) edge of the earth at age 21? What happened to all those brilliant scientists and mathematicians, musicians and artists with HFA - legends, myths? What about HFA running in families of engineers (like my father?) I started looking into Aspergers because my father was "odd" and I suspected he was HFA - then I realized that I might be also - "You're just like your father." I heard it all the time. This was not a compliment, but a condemnation.

Last winter I came across recent research on females Aspergers, by a doctor who noticed that Asperger symptoms in girls were more common than traditionally assumed. She constructed a diagnosis for females - much different than for males. Bingo! My excruciatingly difficult encounters with society made sense. Rather than being uncooperative, stubborn, too honest, intelligent (not a compliment but a condemnation), and serially bored / rejected by social people, I discovered that my brain just doesn't have much of a social function: I use the energy (wasted, to me) that 'normal' people use on their social obsessions to do interesting things - like understanding physical reality.

These revelations, while mystery-reducing, haven't improved my social interactions. I just try to shut up, which feels very wrong; get frustrated, bored, and feel even more alien. I go away, which seems to be what everyone wants anyway.



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12 Aug 2013, 1:13 pm

peterd wrote:
I'd like to live in a world where being autistic was OK, but the reality is that if you're past childhood no one has a clue what autistic ness means or looks like.

Gonewild, I don't think Petard meant that people think adult Asperger's don't exist. I think he meant no one knows what to make of older people with Asperger's.

Since nobody really knew about Asperger's until the early 80s, a lot of people over 45 were never diagnosed. Many of us never even knew the details about Asperger's, certainly not enough to realize we fit the spectrum, until info became more greatly disseminated over the Internet. There hasn't been much attention given to our issues, which do differ from that of younger people, or studies about being older with Asperger's. And some of which need different approaches than what works for younger people.

If you look for books or places online about women with Asperger's, what you mostly see is books or sites about "girls" with Asperger's. A lot of the info is about handling parents, which is not an issue for me any more. Handling siblings and children are different when you're older too, and your diagnosis has come late.

Even the sections about jobs and dating are off. Job opportunities and ways of handling the workplace differ between a 20 year old Aspie and a 50 year old Aspie. And what do you do when you're starting out on relationships like a teenager but you're way too old for teenage-focused advice? I'll bet even flirting (if I could recognize it) differs when you're older. A lot of older aspies seem to have been able to hook up with someone, but for those of us who have lived apart from humanity, there's no age appropriate guidance for getting into life.

I'm immature for my age, but not in the same ways younger Aspies are immature. It's hard to articulate.
peterd wrote:
I just spent three days at an autism conference, as an example. I was just as completely left out in that circumstance as I have been for the rest of my life. If I'd been under thirty, there'd have been all the support I could wish for but I turn 61 this week. I don't exist.
We're underrepresented in conferences, too. I went to one last month (a one day conference). I didn't see many people around my age and some of those weren't Aspies; they were people who worked with Aspies. I got what I could from the workshops, but I did feel invisible and different. It's like we're a subset of Aspies within a larger subset. Which is in turn a small subset of humanity.

peterd wrote:
it's hard to accept that all the rest of the world wants is for us to hurry up and die.
I don't think it's even that good. I think the rest of the world doesn't even know or care that we exist :(


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hartzofspace
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12 Aug 2013, 1:52 pm

I didn't hear of Asperger's until I was over forty, and didn't get a diagnoses until I was forty six. It was a major defrag of my internal systems, and I even went through a grieving process. But after that, I found it easier to accept myself because now I understood what made me tick. When I was able to discern NT from Aspie, I became better able to protect myself from over stimulation, sensory overload in social situations, etc. I began to be able to make allowances for myself which I at first didn't even realize that I needed. Like attending a two hour seminar to see a famous author, and allowing myself to leave after one hour instead of hanging around for an autograph, which seems important to most people. Like shopping a certain way at a certain time to avoid melting down. Anyway, welcome to Wrong Planet! It is very well populated here! :)


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gonewild
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12 Aug 2013, 2:55 pm

I just realized that I've been trying to talk to the wrong people - social people (NT) don't get it and it seems that they simply CAN'T. I may as well have been trying to explain my world to a different species. I think because my father was Aspie, and we stuck together, that I had an expectation that there were many people like us "out there" and I've been mystified (angry) and hurt to find that social people are so insincere, lack curiosity, and don't see how hypocritical they are. NT's say that Aspies lack empathy, compassion, insight into human behavior? We don't have feelings? How convenient for NT's. They can simply deny that we are human and trample all over us.

Wow! I haven't expressed these feelings to any strangers before...



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12 Aug 2013, 3:09 pm

I concur with jrjones9933,

There are some upsides to diagnosis, even self-diagnosis. For my part I realized it myself at 32, about 10 years ago, when a friend of mine, who was a caregiver and teacher of life skills to highly autistic adults, told me that he was able to understand them so well since he was also autistic. I was incredulous, since he didn't seem excessively abnormal. He told me about the spectrum and mild autism, and I immediately looked it up on-line. It was a revelation. Instead of feeling like all my social difficulties were my fault, that I was some kind of freak, I could accept them as the natural outcome of AS. This did wonders for my self-esteem. I'm also better able to manage melt-downs, avoiding situations that I know would be problematic. I'm also able to tell my employer about my limitations if the need arises (not very often).



gonewild
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12 Aug 2013, 3:28 pm

I think I have a terrific life. Although pestered (tortured) to conform, I just couldn't, and have pursued whatever direction my instincts have indicated is right for me. About 90% of the time I have been self-employed; job-jobs are too difficult to maintain. My education was in the sciences, but my devotion is to art. The two join seamlessly in my mind - Nature is a huge space to wander in, both physically and mentally.

For twenty years I've lived in a quiet, rural and beautiful place - I'm invisible and under little stress to conform. What I miss is not having people like me to talk to.



RedSpiralHand
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09 Oct 2013, 5:52 pm

Hi there:

I am 55 and just realized that there is a very good chance that I have Aspergers. Recently, someone I know told me she was just sure that I had Aspergers and I was very offended in the way she categorized me and dismissed me. I wondered why she would say that at until I recently ran across a few youtube vlogs made by adult women with Aspergers. This led me to check out more online information, some of the lists of common traits and a few tests.

Yeah, guess what? I seem to fall well within the range for this disorder. Truth be told, I always have joked that I felt kind of autistic. I even studied tons of psychology in college and underwent a ton of tests and then some therapy... (I have a MS in public health education with a focus on research...started a PhD in sociology and then said "buh-bye" to academia.)

So, a bit of an epiphany for me. I DID contact a local friend who is also a clinical therapist, someone I trust. I don't really plan to do anything differently than I already am...I'm a work in progress. I DON'T plan to seek any pharmaceutical medication at any point....had enough of that in my life.

Funny, over the course of my life the diagnosis I had received were: generalized anxiety disorder, mild depression, mild bi-polar.... But I have recently spent a lot of time alone and reflecting and working on myself and came to the realization that I feel like I've been faking it all my life to appear normal....and I still didn't feel normal.

Anyway, I'm pretty confident in my self-diagnosis being familiar with the territory and pretty accurate at that sort of thing.

I'm most interested in sharing and talking about alternative approaches to dealing with the challenges that come with this kind of mental/emotional/physical wiring. I'm not interested in standard approaches because I don't believe that the medical/pharma industrial complex has our best interest in mind.
Shamanic work, lots of time in nature, gardening and energy work have been the most useful therapies I've found....oh and changes in diet!

:flower: :flower: :flower:



RedSpiralHand
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09 Oct 2013, 6:06 pm

peterd wrote:
Well, I can share your amazement. As far as I can see, though, there aren't any up sides to late diagnosis. Sorry.,.


I'd have to disagree here...

A sense of relieve, for one, that there is a good size group of people out there with similar challenges, from the social awkwardness to the physical issues (like chronic fatigue and gut issues.)

I don't see it as something to "fix"...rather confirmation that we see and perceive the world differently, so it removed a layer of blame and stress.

I view it as a positive...a reason to give myself a break over not wanting to socialize...or for monopolizing the conversation (again,) and, and, and...

I plan to be kinder to myself as a result of this diagnosis.



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10 Oct 2013, 2:18 am

I too recently turned 60 and had a copy of what the psychologist has sent to my physician yesterday, - what a relief! I have been aware of it since last autumn. My parents always knew, I was somewhat different, but I myself never could understand, why all the social stuff had to be so difficult, and why I had to be such faliure in so many respects.

During my long social case, I have been called "personality disordered" and it has been a pain reading about how impossible I am, how fragile and immature and all that.
I suddenly see, that all their descriptions of " mixed personality disorder " are recordings of asperger difficulties: The poor communication face to face, the nerves and anxiety, the poor handeling of multifunction, the need to have things explained more than once, the open confusion in jobs and, and, and....
Even my associated psychiatrist has called it "personality disorder" after having described, what I now know to be typical aspie difficulties.
The two conditions are often confused.
After having become aware of this, I am much more forgiving towards myself and as a concequence of that, more social, it seems.
As RedSpiralHand writes: a layer of stress and blame has gone.

I think, that the only author who wrote something about adults with Aspergers is Tony Attwood. The difficulty is, that adults have so many layers because of learning how to cope, that AS can be hard to detect.
I would recommend Tony Attwood: "A complete guide to Aspergers Syndrome", "Aspergers Syndrome - A Guide for Parents and Professionals" and Liane Holliday Willey: "Living with Aspergers syndrome".
Listening to Attwood on youtube is also worthwhile.


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Last edited by Jensen on 11 Oct 2013, 12:50 am, edited 3 times in total.

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10 Oct 2013, 4:42 pm

For me even self-diagnosing has been helpful and made me feel less like a failure as an individual.

I had been pushed relentlessly by my mother and nobody even allows me to say I am socially awkward because I can perform sometimes and seem like I fit in and everything is fine. But it is a performance which is energy expensive and draining and hardly ever fulfilling. OK, I will admit to have enjoyed on occasion having a bunch of people in rapt attention over some story I was telling, but after that I feel like I need a lie down and sort of like I have been used. It is just a performance and they then expect you to be this sparkly thing all the time. It is exhausting. I was taught to act when I was very young so that is what I do. Any time I allow my actual self to come forth I get met with disapproval. Still, that isn't as bad as disapproving of yourself and having now an idea of why I am the way I am I've stop disapproving of myself quite so much. It feels really good.



gonewild
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10 Oct 2013, 8:11 pm

Hearing from other adults with similar experiences reinforces my own determination to settle all this for myself, and in a way that is peaceful and accepting, rather than anger toward the socially-obsessed majority. My perception of people has turned inside out from when I was a kid. I thought everyone knew that life was supposed to make sense; that nature was the model and that we ought to look to how the world works for answers. That is, I thought people were refusing to be sensible toward each other. All the fighting, backstabbing, lies and injustice; coercion, bullying, hatred. No one could possibly want that, so I went around telling people they were wrong - on just about every level, adults included. Good heavens!

This continued well into adulthood: of course my life socially was Hell! I was on a mission to free all those miserable people from irrational thinking and unhappy emotional addiction. It think it was inevitable that this situation led to a mental health diagnosis: bipolar. I had been trying to cope with a social world that made no sense to me and it took a toll! Lithium did smooth out my moods, but a boatload of social problems continued and after awhile it was obvious there was much more going on. I began studying human behavior, human evolution and the brain and discovered that the people that I thought were suffering some awful irrational disorder are normal! Yikes! They are normal, I'm DIFFERENT! I realized that social humans are simply not capable of understanding people like me; we may as well be different species. So, all in all, the truth did set me free.



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10 Oct 2013, 10:55 pm

Hard to keep this short, i could write pages.

I came across the aspie test about a month ago, I was not surprised at the results,

Was put in special ed I think originally due to tracking problems with my vision, first grade, never got out.

Saw psychologist, was told it was to help make friends, didn't understand as a kid, didn't always give truthful answers, but answered as I thought would be acceptable, or avoided answers, in order to avoid conflict, my parents are incapable of understanding, to them it's all in the imagination, especially depression, maby if there had been testing and diagnosis back then things would have been better, but I had already learned not to trust anyone, couldn't be myself. Which meant I couldn't open up to the psychologist, even still I probably would have been diagnosed.

I avoid being with my family longer then short visits, the real me is more accepted by my friends, I tested about the same as me and another about midway, I think the others may test between center and aspie, maby this is why we get along,

People have asked in the past if I had aspergers, but all I knew was the rain man stereotype.

Getting my score and knowing the test was too short, I looked into aspergers further, found out stuff I never expected was related. Apd, OCD, spd, tracking, didn't realize the spd, just thought I had a high pain tolerance, can be easily burned or cut without realizing it. Knew about the apd from a hearing test a few years ago, was always in trouble for selective hearing as a kid. Found out stuff about OCD that I didn't realize was part of that, enough fits that I would consider going for a professional diagnosis if the benefits outweighed the costs.
When ever I think of something, past or present I see if there may be a link.

Now that I am understanding what's going on, I can deal with It better, chronic fatigue is the biggest problem to work on. Didn't expect that could be part.

Relationships are almost impossible, I don't even like holding hands, but my girlfriend understands, I don't know how long it will last, I can't give her what I think she wants. But she seems ok for now.

My boss tolerates my oddities, but I don't know how much longer I can do the job, the major problem is probably not aspergers related, possible arthritis, and without being able to give a description and X-rays looking ok nothing can be done, I can't tolerate the common meds anyway,

Looking through the posts helps, if anything just knowing you are not alone or going crazy, helps. Or finding ways others deal with problems.


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