New here, looking for other older autistics

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IMSpringer
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13 Aug 2022, 11:19 am

Hi Max,

To be honest, I am pretty new around here myself, and I certainly can't speak for anyone else. But I will say this:
My understanding of the nature and purpose of this site is that it is for people who feel different, and who are feeling at home here. Neurodiversity is not exclusive to ASD, as it has other forms, such as ADD; I happen to have both conditions myself. Anyway, I think that if you feel that you belong here, that is all that matters. If you are getting something out of being part of this community, I am delighted to get to meet you.

It is my understanding that this site doesn't expect or require anyone to have a formal diagnosis. I consider that to be a personal choice.


I got my diagnosis because there was an overarching mystery in my life. Like Godzilla storming through Tokyo. It has never made any sense, and I have suffered horribly. A friend of mine who had been married to an autistic man, suggested that I might be on the spectrum. This was a huge epiphany for me. I asked my doctor about it, and they gave me a cognitive function test. This suggested that I was not on the spectrum. I was devastated. It uprooted me. I had been thinking that I was finally going to understand myself, and this outcome really pulled the rug out from under me.

That was a silly reaction on my part. The truth is, if I am like people on the spectrum, and I can benefit from being involved in ASD-rleated communities, nobody who matters will care what my doctors think.

But as it happened, I pressed the matter, asking what my cognitive function had to do with being on the spectrum. It was a great question, and they sent me for more comprehensive testing. And thatcame back positive.


The diagnosis has radically changed my life. Everything makes sense now. All of my challenges, all of the disastrous outcomes in relationships and jobs, they are all explained by the characteristics of ASD.

Why does this matter to me? Because knowing that I am “in the club” means that what people here are doing to cope are things that work and that can help me as well. My life is hugely improved since I have understood and begun learning to adapt to my new understanding. And after being a hopeless misfit for 58 years, I finally have a place where I belong unquestionably. It has improved my confidence in advocating for myself. Even when I don't tell people of my diagnosis, it is easier than it was before for me to say, "this situation is difficult for me; I need to take care of myself by doing...." or, "you can support me if you are willing to....". Before, I lacked the confidence, when making these requests, to make an impression on people. Now, it seems, my requests feel more authentic to them...because they feel more authentic to me. I am no longer doubting that I have a right to ask.

I am a huge fan of being authentic, and embracing who I am. I hope that you will feel safe and welcome here, and not worry about any trolls who feel a need to judge you for unimportant differences that will arise. It is a sad aspect of human nature that affects all of us, neurodivergent and neurotypical alike.

Can you imagine? If I went to the library, and the librarian kicked me out because I wanted to read the newspaper, and not Steinbeck?


I really enjoyed reading your story. Thank you. And Welcome!



IMSpringer
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13 Aug 2022, 11:45 am

For anyone who may have doubts that they belong here:


It seems that our understanding of ASD is constantly evolving. It used to be Autism or Asperger’s syndrome. Now, the conditions are combined into a spectrum, and they call it Autism Spectrum Disorder. I recently read somewhere (I don’t remember where, but here is a site with a very similar explanation: https://themighty.com/topic/autism-spectrum-disorder/autism-spectrum-wheel) that the Autism spectrum is not one-dimensional, with (formerly referred to as) low-functioning people at one end and (formerly referred to as) high functioning at the other. Now, it is seen as a wheel. The center represents the lowest degrees of any aspect of autism, the outer circle is the highest. The spectrum actually radiates from the center outward. Now we recognize that “the spectrum” is actually a collection of spectrums, each one applying to a different characteristic of autism.

In my case, I am heavily impacted in my relationship abilities, moderately impacted in my communications outcomes, and very mildly impacted in my affect…what people often describe as “looking normal.” I am formally diagnosed ASD.

My sensory sensitivity is very mild compared to the stereotype. I don't love sunshine, but I'm not afraid to go outdoors. Loud noises cause me physical pain, but they don't freak me out. If my computer cord touches my arm when I am computing in bed, it makes my skin crawl. Eating a sandwich that is falling apart in my hands is really uncomfortable. Not just annoying. Creepy.

Like many of us here, nobody ever suspected that I might have Asperger's, but most people always experienced me as weird and discomforting. My voice is loud, and I’m not at all good at “reading the room.” It has often been hard for me to connect with other people. I have had disastrous communications issues with people who would punish me for not picking up subtle cues in our conversations.


Anyway, you are the only person who gets a vote on your membership here. Welcome!



RALowe
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15 Oct 2022, 9:43 pm

So here’s a good example of one of my autistic characteristics: I posted the original post in this thread, got a couple of great replies, and then haven’t been back here for a couple of months. I’m the guy who likes to post on FaceBook but rarely reads anyone else’s posts. I see this as the inward focus that’s part of my autism.

Someone raised the question of whether to tell medical providers about our diagnosis. I’m going to broaden my response to the question of whether to tell friends, acquaintances, co-workers, or anyone about our diagnosis. I’ve told a few close friends (which led to an interesting discussion with one, who I now think also is autistic) but it feels risky to tell people whom I don’t know well - like it might lead them to write me off. Here’s what I’m thinking of saying:

“I’m really enjoying our conversation and would love to get to know you better. But I want to ask your help with a couple of things. First, I’m incredibly bad at recognizing people; it’s called face blindness or prosopagnosia. So when you see me, if you can say, ‘Hi, Bob, it’s Amy, we met at the event at Bill’s house,’ I’ll immediately know who you are and be delighted to see you.

“The other thing is that I’m not always good at picking up on nonverbal cues. So if I’m missing something, it would be a real gift to me if you’ll tell me in words.”

I could modify that when dealing with a medical provider. My idea is to describe the autistic traits I have that may impact our interactions, not to name the diagnosis - which just confuses people who think they know what autism is but may not really get it.

Does this make sense to others? Thanks!



IMSpringer
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15 Oct 2022, 10:02 pm

Yes. I think that makes perfect sense. As divergent individuals, advocating for ourselves is an essential skill. People don't know that we're different unless we tell them, and we don't get what we need if we don't ask for it.

Many people aren't comfortable with that; we live in a society that is not always very welcoming of behavior that is different. I have no problem with that. I don't need to have people in my life who are that rigid in their thinking. When people genuinely care about other people's needs, receptive to those kinds of requests, they are people who belong in my life. I try to always treat others in like fashion.

Thanks, RA. This is a really nice contribution to the discussion.



autisticelders
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16 Oct 2022, 6:47 am

I'm glad you came back and posted again. You have found other old autistic individuals here! I was diagnosed formally at age 68, 3 years ago and am 71 right now. Learning of my autism even at such a late stage in my life has changed everything for the better. Hope you find answers to help sort it all out. You are definitely not alone. (PS I have prosopagnosia and also learned after I got my diagnosis that I am also aphantasiac! I had no idea almost everybody else could see pictures in their minds!)


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RALowe
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16 Oct 2022, 1:57 pm

@austisticelders , I’m intrigued by your statement that knowing you’re autistic has changed everything for the better. I’d love to know more about that; perhaps I can follow your example?



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17 Oct 2022, 5:59 am

thanks! happy to correspond in the messages in the group or discuss in emails, etc. Lots of great insights to be had by asking autism related questions right here.

There are long life times of autistic living,right here all together! so wisdom of experience to be had for the asking! It does take time to sort out all our previous history, emotional struggles, beliefs and etc from years ago.

Don't expect over night change, it is gradual as you get adjusted to seeing everything from this new perspective.

For me suddenly all my sordid past, my painful experiences, my ideas about almost everything had new light and new, fresh, and very different perspectives. Stood my world on its head and shook it hard!! !!

It is sometimes super Upsetting, lots of emotional homework, etc.

Be patient with yourself and practice your best self care.

Some people say they go through all the stages of grief, anger, sadness, denial, bargaining, acceptance over and over in any order and maybe all of them or some of them for a long time or more than one together (mixed state).

I spent a load of time on the internet looking at studies, pages, blogs, forums, etc. Autism has become a passion and a topic I spend hours each day studying and writing about. We are a very interesting bunch of folks! You are definitely not alone!


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emellish
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20 Oct 2022, 10:51 am

Hi, I was always the kid on the outside looking in wondering why rejection followed me everywhere. I'm 77 now having lived a friendless life of weirdness over a checkered past. I recently submitted to an ASD diagnosis that proved positive. If there was any consistency throughout my life, it was with repetitive attempts to join social groups always ending in failure with my inability to connect with people, and becoming stigmatized in various ways. I have always held down a job, sometimes excelling at my work but never as a team player. My first wife of 12 years marriage, walked out because I was boring. My current marriage of 35 years only lasted because my wife has got her own issues dealing with agoraphobia---what a pair we make! We both realized there are few people out there who would put up with either of us---so stick with who you know. It's been a marriage of toleration as I really don't know the meaning of love. I was an unwanted child---that's the way I felt. I was not abused in any way but just felt unwanted. I had an older brother (nine years) who never married, and died at age 51. I believe both he and my father also had this "malady" indeed when I recall memories of my uncles and cousins they all had their emotional issues. Closeness and engagement wasn't a trait on my fathers side of the family. So here I am through many twists and turns 3k miles away and home from what used to be home. I don't pretend to to be some sort of sage or to offer useful advise as my engagement and history of reciprocity with people would not fill an egg cup.



RALowe
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23 Oct 2022, 10:00 pm

@emellish, thanks for writing. You're actually a very strong writer; your words are so clear ... and so hard to read because they remind me of myself. I am married - for 30+ years - and we have one daughter, who is estranged. We suspect that she's autistic, too, but she doesn't seem interested/willing to pursue that possibility. In any case, I was probably pretty insensitive to her feelings at times when she was younger, and she holds a lot of anger about that.

I'm trying to learn to be forgiving of myself. I've always tried as hard as I could to do the right thing and to connect with people, and if my brain interferes with that, it's not my fault (or yours!). I, too, have been pretty successful at some jobs but not so much a team player. I'm quite strong at math and computer work, which helped me as a researcher. May I ask what you did professionally?

Thanks again for writing. Your honesty, openness and articulate writing make me think that you could have more friends than you realize!

bob



RALowe
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28 Nov 2022, 3:04 pm

I’ve seen several comments about wanting medical care providers to provide written instructions. Most providers i the US these days use electronic medical records (and hate them, for good reason!), and one feature of most electronic medical records is that they generate a AVS (after-visit summary) for the patient. They vary in quality; some are long lists of what medications you take and what your blood pressure is, but some contain an actual treatment plan for the visit. So it’s worth looking to see if they are helpful.

And most electronic medical record systems also include “patient portals,” so that we can look at both the AVS and the physician’s note for the medical record. Again, some of those are helpful and some are junk, but I’d suggest asking the office staff how to access the patient portal after your visit.

I’d be interested in others’ experiences as to how helpful this is.



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29 Nov 2022, 10:12 am

RALowe wrote:
Jimmy, thanks for the well-thought-out reply. May you continue on your path to recovery.


Thanks.


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29 Nov 2022, 11:53 am

I greatly appreciate this thread. I will turn 69 at the end of December. I realized I was autistic when I happened upon a couple of articles describing autistic professional women and the penny dropped. Suddenly my life made sense instead of being inchoate.

I have been married multiple times. I'm current married and relatively stable in that life. I have professional degrees and licenses. I've been self-employed for more than 20 years and this has worked well for me.

I am trying to retire, but that has been more difficult than it sounds. I'd say I've been working on it for a couple of years now. The state gutted the program (providing services to people with developmental disabilities) including salaries for providers, so I am now working twice as hard for half as much.

I have a lot of trouble with chit chat type socialization, crowds and noise. I have a few friends, but they are far away and tend to be intense but infrequent. Nothing day to day.

I have a number of chronic medical conditions and have had trouble finding medical providers who will 1) believe me and 2) actually help. I now have a primary care doctor and I pay something like $125 flat rate for her services per month. Exorbitant, but without the continuity of care and someone who listens and respects my input, I would be nonfunctional.


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02 Dec 2022, 11:15 am

RALowe wrote:
I’ve seen several comments about wanting medical care providers to provide written instructions. Most providers i the US these days use electronic medical records (and hate them, for good reason!), and one feature of most electronic medical records is that they generate a AVS (after-visit summary) for the patient. They vary in quality; some are long lists of what medications you take and what your blood pressure is, but some contain an actual treatment plan for the visit. So it’s worth looking to see if they are helpful.

And most electronic medical record systems also include “patient portals,” so that we can look at both the AVS and the physician’s note for the medical record. Again, some of those are helpful and some are junk, but I’d suggest asking the office staff how to access the patient portal after your visit.

I’d be interested in others’ experiences as to how helpful this is.
I've gotten copies of my medical records. They're pretty good at saying what the doctor did and what they found. That is, they document the diagnosis.

The diagnosis, however, is not the only thing generated by an appointment. There can also be a To-Do list. Things you are supposed to do, in what order, when, and for how long. How long or soon after doing each before you do the next step. Appointments to get elsewhere and when to call back for results. Phone numbers to call, when to call them, what to ask for when you call it. When to come back. The To-Do lists can get long and I'm not going to reliably remember them, nor which things the doctor's office will take care of without any action on my part. I would like simple, clear, jargon-free written instructions on what I am supposed to do after I leave the office. I seldom get this. While seeing the doctor they may have said what they want me to do next but my memory typically is not reliable for this.


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02 Dec 2022, 11:23 am

I am older now than I ever have been before.


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02 Dec 2022, 11:50 am

IMSpringer wrote:
...Why I get so anxious when a plan goes awry. Why I always feel like I have to criticize when someone contradicts themselves, or does something different from what they had said earlier. Why I am so easily distracted from the topic at hand every time someone says something that seems to me to be inaccurate. Why I seem to feel a need to call out every out-of-place detail in every moment at every time. Why people telling me how I feel or what my motivations are, are so often miles off base.

Beautifully articulated. Can relate.



Struggle7
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03 Dec 2022, 10:59 am

I'm 55, really decided to come on here after a year of online therapy which wasn't making progress. I'm almost postiive I'm autisitc. My therapist didn't think so. I was looking for answers as to why I can't form romantic relastionships with men, and please don't say, "maybe it's because you're lesbian." All my life, I've had terrible crushes (more like obsessions) with dark-haired, dark-eyed men. I don't know why that trips my trigger, but it does. But men don't like me. They never have. Every man that I have pursued (not very many) hasn't been intererested. I got mad at my therapist and hung up on her. We were discussing how to know if a man is interested in me. She said, "because they flirt with you!" Yet, the last time a man really flirted with me, it was seven years ago. I'd never had a mand flirt with me like this. On a yearly basis, he would ask me if I am seeing anyone. This confused me, so one time I aske dhim why he was so curious about my love life. Immediately, he was like, "I am not interested in you, I don't want anything from you, I don't want to sleep with you." But he still kept asking me, which annoyed me. It was like he was mocking me. It's like askiing a really overweight, unattractive woman how her modeling career is going. For someone who's not interested in me, he certainly keeps tabs on my blog, my Instagram and on LinkedIn.

So I told my therapist about this man and said he was flirting with me, but nothing happened. So does he like me or not? She got angry and burst out with "f**k HIM!"

I guess what I was struggling with was her logic/reasoning. If a man flirts with you, it means he's interested. Well lady, obviously not. There are people who flirt just to flirt, and they don't mean a single word of it.

I had to figure this out on my own, after seven years of being obsessed over this guy and nothing happening...but he IS married, which baffles me even further. Why ask me if I want to be in a relationship and what my ideam man is, if he doesn't know anyone I'd be interested in?

I've tried dating sites, I go to bars and I'm pretty invisible. Even when I was younger, I was invisible at bars. About six years ago, I approached a guy at a bar when I was singing karaoke...and... nothing.

One time a guy did say he had made a move on me, but I didn't move back, so he moved on. When I asked him to explain his move, he got huffy and said it didn't matter.

And of course being a self-diagnosed autistic does't help me at work. Just yesterday, I found out I was proofeading ads, but didn't know it. I've been on the job for six weeks, but the people who wanted me to proof the ads just said, "proofread the English." That's it. No context like, "this is an ad, please write these so it's more exciting." And when the other co-worker in my department explained these were ads, I said, "no one told me this until now." I tried to explain it would have helped if I'd known these were ads in the first place, she said, "well you know now." But WHY DIDN'T ANYONE f*****g TELL ME? I love this job, but I worry that I'll lose this one too, because I can't read people's minds. And when I FINALLY get the drift of something, it's usually a week after I've been fired, because it's like, "OH NOW I get it."

I'll do the best I can, but when I don't ask questions, I get irritated looks/comments, yet I'm expected to know everything there is to know within 30 seconds of being on the job.

I really don't want to work anymore. It's this kind of trouble that makes working exhausting for constantly worrying I'm doing a bad job.

And don't even ask me to evaluate myself. When I think I suck, that's when people really like my efforts. When I think I did well, that's when I get the sympathetic looks of, "this is something we've noticed you've been struggling with since day one." And you haven't said anything three months later? Again, I'm not a mind reader.

I got on Wrong Planet a couple weeks ago, and found a link to an autism test. I clicked on the link today and took the test. Results? 40 out of 50. Yeah, pretty sure I can bet everything, including my life, that I'm autistic.

My therapist continually doubted I had autism. She has contacted me twice since I hung up on her, but I'm still too angry to respond to her. But I think I'll send that photo of the results of the test. Since this website is an affiliate of the online therapy group which sponsored the test, she can't really deny the results, can she?

I've only had one boyfriend in my life, and I broke up with him 10 years ago. I've not had another. And I REFUSE to date a man I'm not attracted to. It's just not going to happen. And yes, I'll probably never have a romantic relationship again in my life, and that's fine, if I can keep myself employed and manage to save at least a year's salary. That's around $27,000 a year, which isn't much, but since teaching in China hasn't worked out either, let's hope this new gig is something I can manage.

Thanks so much for reading this far. I think I'll not pay for therapy again and just hang out here. Thanks for listening.