Expectations for an autism forum

[keebles]

My main reason for coming here was to finally have a place where people could understand me and I could relate to others...something I don't have in my day to day. I've gone the professional help route and they just seemed to make matters worse. They seem to know enough to diagnose me (I did have to fight a bit for it at first though), but then all they want to do is drug me up and expect that to help.

Relationship-wise, I have been married once and I couldn't hack it. But I can relate to those on this forum who are younger and want a romantic relationship...I was that way...once. It's hard to be in your mid 20's and to have never had a relationship. It's why I ended up married to the wrong person in the first place...I jumped on the first one that came along. In my surrounding NT world you are "trained" (especially if you are a girl) to want marriage, kids, and a soccer-mom kind of life, so I did. Thankfully, I couldn't get pregnant, so at least I dodged that bullet because I know I would have been a horrible parent (and where would I put all my Disney stuff if my spare bedroom housed a kid?).

Part of me wants a romantic relationship again, but I just have to remind myself that I would have to share my space, my time, my stuff, and break my routine (as you do in relationships), and that settles it. Besides, I tend to attract the wrong sort of person anyway, so better safe than sorry. Not once have I met someone since my divorce that has showed interest in me (that I've noticed...which I'm told is one of my issues), so there is no problem there. If it's meant to happen, Prince Charming will find a way to get even me to notice...that's my theory anyway. If not, I'm content in my life as is.

I have had a long-term job, but it's neither high paying or rewarding...my lack of education sees to that. I stay here because of comfort level that comes with being here since practically birth (my mother worked here when I was a baby) and they let me stay, despite my issues, because they can pay me a lot less than my educated counterparts (I work in IT and I'm self-taught). I'd like to go back to school and finish a degree (in something), but that would open a whole new can of worms both socially and financially that I can't handle, at least not now. I keep saying I'm going to go back, but no action on that front as of yet. Besides, have to decide on a major first and I can't seem to focus on a career path long enough to study for it. Despite my "gift" with computers, I wouldn't want to go to school for it (college is what ruined my "gift" with art...I started as a graphic design major and quickly lost my taste for art, something I had done my entire life), and I don't live in an area with a plethora of degree options anyway, so it's slim pickins' for an Asper.

About the only thing that I've found unrelatable with others on this forum is the fact that most seem to be good with money and I'm horrible with it. Granted, I pay my bills on time and I keep a roof over my head, but I do live paycheck to paycheck and there is no wiggle room. I don't know if I can chalk that up to my ASD or OCD, but my Disney obsession takes a ton of money to keep happy (that and my general lack of spending control) and I have a lot of credit card debt because of it. I see something, I want it, I buy it, I'm happy...for the moment, until something new comes along that I just HAVE to have.

Well, the money thing and the fact that everyone else seems to be really good at very short answer posts and I tend to write War and Peace, but that might be a side-effect of the blog world. Overall though, I'd say that joining this forum has made me feel a lot better about my diagnosis and myself, so I'm definitely happy to be here!

 

[Beguiling Orbit]

I also hoped to find definitive solutions too, and they don't seem to be here or anywhere. =o(

Perhaps if you broke down the problems into categories and then posted them one at a time onto new threads, then we could help you troubleshoot them. You might even find some solutions that are, if not definitive, then at least one step closer to where you want to be in life. I would be happy to help you troubleshoot and I guess many others here would be glad to help, too.

 

[onlything]

It's a spectrum, so we aren't going to be the same or at times even similar to each other. I came here looking for understanding, sometimes I do find it, sometimes not. Seeing how different people are from each other, it may not be possible to find a perfect connection at all, it doesn't mean however that it's not worth finding forums like this one, even if expectations often clash with reality. What I appreciate here the most is that people just speak their minds and, all in all, seem to be on a close enough page to mine.

I have a similar impression of the relationships others have found in their lives as you and although I am glad for them, it does feel lonely at times. Still, I do appreciate how open, kind and logical are people on this forum, and how quick to help and give a substantial advice, especially on social norms.

 

[Fridgemagnetman]

Seeing how different people are from each other, it may not be possible to find a perfect connection at all,

I sometimes think this is the most fundamental thing.

Desparate for connection but,as you say, it is must not possible -sometimes.
Or not possible in the way that we hope.

Sort of like cassandra complex or something. Cursed to be a prophet and know the future but condemned not to be understood

 

[onlything]

I sometimes think this is the most fundamental thing.

Desparate for connection but,as you say, it is must not possible -sometimes.
Or not possible in the way that we hope.

Sort of like cassandra complex or something. Cursed to be a prophet and know the future but condemned not to be understood

Exactly. Unfortunately, since we don't have the same experiences, we don't process the world, thoughts and emotions in an exact same way. Similar, yes, but it's not and probably never will be the same, unless our minds get connected together in some great futuristic matrix of scientific discovery. Still, it doesn't have to mean that the connection is not possible at all, just... harder to achieve. Clear communication is the key here.

Spot on with the Cassandra Complex reference.

 

[Ambi]

I was afraid to post because I thought too many people would be cold, rude, condescending, and unempathetic. I was pleasantly surprised to find the complete opposite I am in a relationship - no, it did not fall in my lap, though. Different people relate to different things I am going through, and in the same way, I can relate to some struggles, and not to others. I tend to think we are all struggling equally hard, but at different things.

 

[ZebraAutismo]

I didn’t hold us much hope after the annoying ness I had with WP and other autism forum. I mainly joined here because the head at collage showed it me.

 

[Full Steam]

I thought I'd find that my expectations of me just having a "dash of autism" would be re-enforced.

While I was 99% sure I was Aspie, I also "knew" I couldn't be like all those poor people with "real" autism.

Not me - I'm just obviously an elite aspie.

All of that crumbled over time as I found that, one by one I had pretty much every trait, and those around my in cyberspace that seemed more autistic than me were often just more in touch with and open to their own autism. The traits that took the longest to be realised were the ones that society had beaten on so badly I actually despised them in myself.

Swimming in the warm waters of autism land (ie our slices of internet paradise) has been life changing and affirming for me.

I now agree with the neurodiversity view; there is no HFA/LFA, just autism + comorbids and add on difficulties.

 

[Fridgemagnetman]

I thought I'd find that my expectations of me just having a "dash of autism" would be re-enforced.

While I was 99% sure I was Aspie, I also "knew" I couldn't be like all those poor people with "real" autism.

Not me - I'm just obviously an elite aspie.

All of that crumbled over time as I found that, one by one I had pretty much every trait, and those around my in cyberspace that seemed more autistic than me were often just more in touch with and open to their own autism. The traits that took the longest to be realised were the ones that society had beaten on so badly I actually despised them in myself.

Swimming in the warm waters of autism land (ie our slices of internet paradise) has been life changing and affirming for me.

I now agree with the neurodiversity view; there is no HFA/LFA, just autism + comorbids and add on difficulties.

Loser

 

[Fitzo]

I've never been on any other autism forums, so cannot compare, but joining this one has definitely changed my life for the better. The first day I joined someone said 'welcome to your tribe' and it brought me to tears. Up until that time I felt like some sort of alien from another planet! The concept of belonging anywhere was something I had come to believe would never happen.

I have been a chronic insomniac for over 45 years which also alienated me from most people. I was going to therapists who had absolutely no concept of what it is like to struggle to sleep every night of your life and yet they are supposed to be able to treat you. When I joined an insomnia forum, once again it was a massive relief to finally communicate with others who genuinely 'got it' for the first time in my life. There have been a couple of other forums I have joined for different reasons which have also provided a sense of relief knowing others have had similar experiences and I'm not the only one feeling this way. Those encounters prompted me to seek out an autism forum for similar reasons, but also to find some answers to the lifetime of questions I had in my head.

I only stumbled upon autism because my young nephew was showing significant autistic traits and I decided to do some research. I was quite stunned and initially shocked when I began to recognize myself. And the rest, as they say, is history!

The question of diagnosis though, is far from straightforward. Especially for mature women. It is recognized by many experts that women on the spectrum can present very differently to men. The diagnostic criteria however, have a long way to go in recognizing these differences. Women are far better at mimicking NT behavior and obviously the longer you have been doing it, the better you become. For that reason, many are dismissed out of hand by psychs, who always think they are experts. In my own experience, my GP did exactly that, but I persevered until I got a proper referral to a clinic which only deals with autism. The psych that I saw concluded that I am definitely on the spectrum, but at a 'sub clinical' level. The DSM-V is very specific and is still very male orientated, so many people, especially women, will be excluded from a formal diagnosis. My psych believes that in the future, there will likely be different criteria in assessing females than from males. But for now, it is what it is! It was once thought that autism only affected males. We now know that is obviously wrong, but the ratio of males to females is likely far closer than currently believed. That is one of the reasons why there are a great many women on here, but many will not be formally diagnosed.

I can understand your frustration concerning the relationship issue, but there are an enormous number of variables which play a part in the ease, or otherwise, of making connections with the opposite (or same) sex. And I doubt that is limited to those on the spectrum! I do believe, however, that lasting relationships are far more challenging for us. In my particular case, I have come to the conclusion that the rewards associated with being with someone don't compensate for the chaos my life inevitably becomes when I'm in a relationship. It did take me a long time to realize that though, and at your age I'm sure I would feel as you do. I think many other 'oldies' here would probably agree. Unfortunately there are no shortcuts to experience!

I hope you are one of the lucky ones who make that special connection and find a way to make it last!

 

[Full Steam]

Loser

Born to lose
Live to win.

 

[Full Steam]

I've never been on any other autism forums, so cannot compare, but joining this one has definitely changed my life for the better. The first day I joined someone said 'welcome to your tribe' and it brought me to tears. Up until that time I felt like some sort of alien from another planet! The concept of belonging anywhere was something I had come to believe would never happen.

I have been a chronic insomniac for over 45 years which also alienated me from most people. I was going to therapists who had absolutely no concept of what it is like to struggle to sleep every night of your life and yet they are supposed to be able to treat you. When I joined an insomnia forum, once again it was a massive relief to finally communicate with others who genuinely 'got it' for the first time in my life. There have been a couple of other forums I have joined for different reasons which have also provided a sense of relief knowing others have had similar experiences and I'm not the only one feeling this way. Those encounters prompted me to seek out an autism forum for similar reasons, but also to find some answers to the lifetime of questions I had in my head.

I only stumbled upon autism because my young nephew was showing significant autistic traits and I decided to do some research. I was quite stunned and initially shocked when I began to recognize myself. And the rest, as they say, is history!

The question of diagnosis though, is far from straightforward. Especially for mature women. It is recognized by many experts that women on the spectrum can present very differently to men. The diagnostic criteria however, have a long way to go in recognizing these differences. Women are far better at mimicking NT behavior and obviously the longer you have been doing it, the better you become. For that reason, many are dismissed out of hand by psychs, who always think they are experts. In my own experience, my GP did exactly that, but I persevered until I got a proper referral to a clinic which only deals with autism. The psych that I saw concluded that I am definitely on the spectrum, but at a 'sub clinical' level. The DSM-V is very specific and is still very male orientated, so many people, especially women, will be excluded from a formal diagnosis. My psych believes that in the future, there will likely be different criteria in assessing females than from males. But for now, it is what it is! It was once thought that autism only affected males. We now know that is obviously wrong, but the ratio of males to females is likely far closer than currently believed. That is one of the reasons why there are a great many women on here, but many will not be formally diagnosed.

I can understand your frustration concerning the relationship issue, but there are an enormous number of variables which play a part in the ease, or otherwise, of making connections with the opposite (or same) sex. And I doubt that is limited to those on the spectrum! I do believe, however, that lasting relationships are far more challenging for us. In my particular case, I have come to the conclusion that the rewards associated with being with someone don't compensate for the chaos my life inevitably becomes when I'm in a relationship. It did take me a long time to realize that though, and at your age I'm sure I would feel as you do. I think many other 'oldies' here would probably agree. Unfortunately there are no shortcuts to experience!

I hope you are one of the lucky ones who make that special connection and find a way to make it last!

I think the DSM V is deliberately exclusionary of any one that the committee decides does not require assistance.

It's not accurate as diagnosing autism in people who are adjust to society norms, and/or diagnosed later in life.

I just made it in, but a year earlier in my life or a year later and I probably wouldn't, yet autism is for life.

If you have a large number of people drifting in and out of diagnostic criteria over time, in a condition that is life long, then your diagnostic criteria is faulty.

 

[Sherlock77]

I just stumbled into this forum, literally... I had self diagnosed, probably in May 2017... In early June I did a websearch for photography and Asperger's, and one the hits was a topic on this forum... I explored around a little and joined, prior to that I had not even thought of joining a forum about Asperger's...

So what did I expect? I don't know, see the paragraph above...

Relationships? I have generally had some difficulty making "lots" of friends, but have always had some friends... I have only had my first true romantic relationship (at the age of 45) within the last year, I've talked about that a little in some other topics on the forum...

 

[sneaky snek]

I guess i wanted advice or friends or something.

 

[Steve0001]

I was somewhat upset by the reply of @Propianotuner . “I don’t generally discount people who self-diagnose, but....”
There are many reasons people are afraid to seek a formal dx. The stigma of being labeled with a disability by those who don’t understand can be terrifying. Trusted friends who turn their backs on you and return to the pack. Who doesn’t remember being picked on or bullied at school for being different?
This isn’t a club where a formal dx is worn as a badge of honor, it’s a condition and people try to cope in the best way they can.

 

[Suzanne]

My expectation of ANY forum, particularly US based ones, is to sign up, admit I'm a disabled Xbox fan from England who's currently unemployed, and then the trolls all pile in, from gaming platform zealots to Daily Mail readers angry about my being on benefits as opposed to working full time just to keep the "Wolf from the door" like probably most of them do.

For a while I'll put up with the trolling, hitting the report button if it goes too far, which more often than not it does, I then respond "in kind" and promptly get banned when the Mods side with said trolls who all have ridiculously high (possibly hacked) post counts and at least 2 aliases/back up accounts.

Meh, it's been my experience so far in nearly 20 years of forumming.

I have spent 17 year's in France and felt too ashamed to seek help, but at long last, I am heading towards that. A bit of a downer, because my husband went to see our dr and he "unwisely" said I was hoping for financial aid and she gave a sort of:huh, not a chance kind of look, which threw me a bit, when he related it to me, but I think she is applying to the fact that I am an immigrant; however, I am a legal one and my husband has worked ever since arriving, so I hope that I can get a bit of financial aid.

Personally, I would be selective where I mention I get help; because when people have to work around the clock and no release, I am afraid, they will get angry, since they are the ones actually paying for you ( and maybe me) to get help.

There are a lot of fraudsters around, who will lie to get benefits and then, you have people who deliberately have children to get benfits and thus, the tempers rise.

 

[Suzanne]

I was somewhat upset by the reply of @Propianotuner . “I don’t generally discount people who self-diagnose, but....”
There are many reasons people are afraid to seek a formal dx. The stigma of being labeled with a disability by those who don’t understand can be terrifying. Trusted friends who turn their backs on you and return to the pack. Who doesn’t remember being picked on or bullied at school for being different?
This isn’t a club where a formal dx is worn as a badge of honor, it’s a condition and people try to cope in the best way they can.

I honestly do not think he meant to insult, but he has said that he has met many who say they are self diagnosed, but actually, they are not.

A spiritual sister ( we are of the same faith), related that one of her niece's has been diagnosed with many issues and I said: I would be suspicious of that and her response was: it is difficult, because her mother is the one who told me. So, that told me that she also suspects there is a bit of a fabrication going on.

I met this girl and no way is she an aspie. She even counted off her fingers with pride, what is wrong with her and lol she said: I have aspergers and autism.

How I see it, professionals often get a diagnostic wrong and so, what is to say, that they got that right?

I mean, I was laughed at once because I said I have social phobia. I was accused of fabricating it, because I wanted help financially. Actually, I wanted to be recognised for relief purposes. She based my "lie" on the fact that unlike everyone at that unit, I was well dressed and clean and not a smoker or drug taker or a drinker.

 

[SusanLR]

I was diagnosed late in life only two years ago in my late 50's.
I'd never heard about Asperger's until a Social Worker whom I was working with for grief over losing my Mom
started seeing signs and kept notes until she had enough
to tell me about it one day and suggested I find an expert in ASD for testing.

I knew from the questions and answers in the tests that the traits fit me and how I had lived my life perfectly.

I came across this forum while researching Asperger's after my diagnosis. I've never belonged to another forum either on the subject. Having no one to talk with except my therapist, I joined in hopes of learning more about it and hoping to find others who would understand me.
Perhaps connecting with others with same type ASD traits and share with each other what it is like to be on the spectrum, our struggles, our successes.
Yes we're all different, but, I find most are somewhat on the same page.

I feel I can talk openly without being put down or bullied.
Everyone seems eager to help each other and are friendly here.
I don't have that in real life as I have no close friends or family left now.

As far as relationships, I never really connected in life
to anyone except my parents. I never felt the need to.
Romantic relationships just happened a few times.
I never sought them out. Never wanted to marry or have kids. Just wanted the freedom to be me, however immature that might be.
Fortunately I did have a high IQ and have a couple of different degrees. Luckily I found steady interesting work in the field of medicine.

I was happy enough with my life, but, now have lived long enough to see everything change. No family left,
retired on SSD with health issues. I now own nothing which leaves me feeling I have very little control over my life. The worst part though is the feeling of totally alone since I never learned to feel closely connected to anyone except my parents. And never learned to feel comfortable alone. How to accept this change and find some sort of reconciliation is now my challenge.

 

[Progster]

I think the DSM V is deliberately exclusionary of any one that the committee decides does not require assistance

The problem with the DSM is that it is written by people who don't have and aren't affected by the conditions they are describing.

 

[Propianotuner]

I was somewhat upset by the reply of @Propianotuner . “I don’t generally discount people who self-diagnose, but....”
There are many reasons people are afraid to seek a formal dx. The stigma of being labeled with a disability by those who don’t understand can be terrifying. Trusted friends who turn their backs on you and return to the pack. Who doesn’t remember being picked on or bullied at school for being different?
This isn’t a club where a formal dx is worn as a badge of honor, it’s a condition and people try to cope in the best way they can.

Suzanne said it well. I also tried to be as clear as I could in the OP and was even more clear in my response to her. There are self diagnosed people who don't sound very much like they're on the spectrum. Even in those cases I do prefer to give them the benefit of the doubt but I have to be honest about there being some uncertainty.

It has also been said in this thread that there are people with a formal diagnosis who posters have their doubts about.