Expectations for an autism forum

[Propianotuner]

People come into any forum with expectations. What are/were yours for this forum? How about other autism forums?

To be perfectly honest, I didn't come here expecting so many people reporting that they are in a relationship. I also understand that it can be irrational to think this way and maybe very much a product of my own frustrations, but the way members have portrayed it, it has felt to me like relationships have basically fallen on their laps in comparison to the sheer amount of failed effort that I've put into trying connect with people.

Also, I've noticed lots of self diagnosed people on different autism forums and admittedly feel skeptical at times but that doesn't make any one member less of a valid member to me, it just means that I'm not always so certain they understand what it's like to have the kind of symptoms that I do. In no way am I putting anyone on blast with this thread, and I'd like to stimulate some healthy dialogue about these kinds of things so we can understand each other better and share interesting things about what we expect from an autism forum.

 

[Progster]

Well, I expect from an autism forum that most of the members will be either diagnosed with autism, or have autistic traits, or have at least some connection with autism. Apart from that, I know that autism is a spectrum and people all have different traits, personalities and circumstances, so I expect that people will all be different. There are some common themes - that most people with ASD have anxiety, most have relationship difficulties though they may or may not be in a relationship, some have friends, others have few but most have social difficulties, most have employment/education difficulties, etc - one would expect these things, because they are diagnosed with autism, and if they didn't have difficulty in these areas, it is unlikely that they would have been diagnosed.

 

[Suzanne]

I have been continually surprised with how successful aspies are in the work force and how they are able to "hide" their aspienesses, but in fact, what comes across to me, is that those ones, found out later in life that they have aspergers, so in actual fact, there was no "hiding", because awareness has to take place for that to be a fact.

I am self diagnosed and it is lovely to read that you do not discount that. I hope to be officalised, but am trying to not pin too much hope on it.

As for relationships. I had no expectations of even marrying, let alone dating and so, it has always been a surprise that I spent my time before marriage, in some sort of relationship.

The encounter with my husband was due to some nasty things coming from my childhood. In my fear, I had opened up to this lady neighbour, but it is apparent, that she was not keen about me, because despite asking her to not say anything, as I needed to get my head around it first, she told her "friend", who actually was her boyfriend a lie, which prompted him to say she had no choice but contact the police.

During the proceeding months, I had heard of this man, but never seen him and then, one day, she said he wanted to meet the woman who was going through so much ( long story) and so, with curiousity I said ok, but was petrified, because of the expectations etc. It was mortifying when I met him, because, well, she herself was a woman who never looked after herself. Extremely frumpy and I am rather afraid, I came to the conclusion that he must not be all that, which sort of made it easier to meet him. Oh, how wrong I was! This tall and very good looking guy walked towards where I was sitting and held out his hand and I died inside lol

I felt so uncomfortable around him. Horribly embarrassing to acknowledge and really good looking guy.

Tons of other things occurred, but out of what seemed a long time of not seeing him ( never alone and thought he did not like me), he knocks on my door and asked me around for a meal. I was stupidily nieve, because it never occurred to me he must like me!

I went over and it was not too soon that he admitted that "he fancied me like crazy". I was so shocked, I nearly dropped my drink.

We dated and had a host of issues and then got married and that was 26 year's ago and our marriage is not a superb one.

Never marry or get involved with another for their looks.

 

[Streetwise]

People come into any forum with expectations. What are/were yours for this forum? How about other autism forums?

To be perfectly honest, I didn't come here expecting so many people reporting that they are in a relationship. I also understand that it can be irrational to think this way and maybe very much a product of my own frustrations, but the way members have portrayed it, it has felt to me like relationships have basically fallen on their laps in comparison to the sheer amount of failed effort that I've put into trying connect with people.

Also, I've noticed lots of self diagnosed people on different autism forums and admittedly feel skeptical at times but that doesn't make any one member less of a valid member to me, it just means that I'm not always so certain they understand what it's like to have the kind of symptoms that I do. In no way am I putting anyone on blast with this thread, and I'd like to stimulate some healthy dialogue about these kinds of things so we can understand each other better and share interesting things about what we expect from an autism forum.

i just thought everybody would have the label Aspergers syndrome ,I had seen the word Aspies on YouTube and read a vlog .
I never connected that it sounded like me , and then of course being autistic I thought the word forum would be a lot of old men sitting in togas in the forum discussing things heatedly -i've seen a BBC drama called I Claudius in the 1970s ,can't remember what I've referenced it from after that.
of course my compartmentalised brain brought up !i clavdivs'!, a childish joke !because of the font used in the BBC drama series.

 

[Crossbreed]

I expected to connect with (one of) my tribes.

As to relationships, NT dating tactics always failed for me. I had a bromance growing up, so I knew that a close relationship was possible, but that just sort of happened with time.

I discovered that if I just made myself get out in public (where my interests lie), I could, again, cultivate organic friendships in that fashion. Over time, one woman grew closer to me and we decided to get married. (It probably helped that she has ADD, which is next-door neighbors to ASDs. )

I just hung out at her family home or went to coffee with other friends from church. We didn't go on a just-the-two-of-us date until after we were married.

We've been married for 34 years. The first 17 were blissful until the onset of her depression. She enjoyed my [undiagnosed Aspie] candor at first, but now it often grates on her.

 

[Propianotuner]

I am self diagnosed and it is lovely to read that you do not discount that. I hope to be officalised, but am trying to not pin too much hope on it.

I don't generally discount people self diagnosing, but I must admit that there are a number of self diagnosed people who I have seen and run into, that have given me the impression that they don't understand. You, however, are not at all someone I've thought about that way and I can relate to things you've said. I have been torn over the self esteem issues you've shared and want to say that I wish you the best in working through those tough thoughts.

It might sound strange, but when I first saw you on the forum I could tell from your eyes that you have ASD. There is something in the stare of a person with ASD and their expression when taking a photograph, which I find easy to recognize and have observed in myself and others. But that aside, you've made it pretty easy to see in your comments.

There are plenty of contributions I appreciate from folks who I'm not sure of, and it isn't too much of an issue for me seeing them on such sites as Aspie Central or WP.

 

[Blue]

I'm surprised how many people are in relationships too. I never connect with anyone.

 

[Suzanne]

It might sound strange, but when I first saw you on the forum I could tell from your eyes that you have ASD. There is something in the stare of a person with ASD and their expression when taking a photograph, which I find easy to recognize and have observed in myself and others. But that aside, you've made it pretty easy to see in your comments.

And this was a candid shot and I was HORRIFIED when my husband's aunt took it, but I guess my dear husband whispered in her ear and so, she said something, which I turned to look and voila caught the moment.

As to strange? Not at all. In fact, as "strange" as this seems, I feel gratified, because there is always a fear that one acts out what they want to be. In fact, I rather not have aspergers, because it is a huge blight on my life; but I have and so, I embrace the qualities and accept that I will never be a "popular" person, which I would love to be, but know I could not cope, as I have been the centre of attention a few times ie I am talking in a group and they are looking at me and I tell you, it is an awful feeling and I cannot stop talking and just want to run.

My purpose for joining here, was to see if there really is chance that I have aspergers or not, since it will be a miracle if I get a diagnosis ( live in France). I felt such a fraud at first, but was quickly reasurred that the contrary is true and I cannot tell you how wonderful it felt to be with people who I felt comfortable with. I have continueously had this expression, on ones relating experiences that I have been through: but with a smile, not quite the shock that smilie portrays lol

I also set out to chat with officially diagnosed aspies and they also said that there is no doubt I am an aspie. In fact, I chatted with one lady who said she thinks she has aspergers, but it became quite apparent I was talking with an NT! I cannot quite put my finger on it, to what it is that makes someone an NT or aspie, but I could tell she was not an aspie.

I wish you the best in working through those tough thoughts.

Thank you. If it were not for my God, I would not know where I would be. He calms my turning thoughts and recently someone suggest OCD, which I do believe I touch on slightly.

So glad that you do not suffer from low self esteem. It is just awful, because you cannot run away from yourself!

 

[tree]

I hoped there would be some people who
had cats and would like blankets for the
cats to lay on.

 

[OkRad]

This is an interesting post . Relationships? Wow, I am in agreement. But to self dxing? Some of us have been put through the wringer and have no choice.

I was dxed with both PDD-NOS and Austism, NOS. Then, when the new DSM came out, my dr was concerned and sent me to this famous place that dxes autism. The guy laughed in my face and said because I greeted them, they knew I did not have it.

However, I am a next generation diagnosis. Let me explain......

I got Karyotyped because every dr kept saying I was not diagnosable. I am part autism, part not, strong is some traits, weak in others but not NT.

The geneticists found a duplication over Chrom 6. While this is not a syndrome yet, it will be. There already is Chrom 8 deletion syndrome. Duplications are more rare.

If I had not been karyotyped, I would have kept going around in circles like so many are right now. Is it mental? Physcial? Are you just nuts? What is the matter? Karyotyping was the best thing I ever did medically.

I joined the Chrom 6 research project and found people like me. Some have been dxed with autism and some not and some partial, but we all have host of many troubles and little understanding from drs.

In the furture, I predicts the term "autism" will give way to the specific genetic markers and syndromes. Instead of Autism on record, it will be Chromosome 6 Duplication (which is on mine) or CHrom 12 deletion, etc etc etc......

My geneticist makes it clear in these cases there is an enironemntal trigger, but for now, that is unknown, so chromosome 6 duplication is the dx that replaced autism.

Anyway, I find more support here than ANYWHERE because many of us are not NT by any stretch and cannot even fake it. And yet, we have no community, no friends and no help or understanding from most our drs.

In fact, they are wanting to refer me to the Undiagnosed Diseases Network to see if there are others like me somewhere in the world.

So welcome to all Non-nts or NTs who want to learn. We welcome everyone.

 

[rainfall]

I came here looking mostly for other parents that have a child with autism and had recently started to look at myself as being an aspie. My only real expectations were to hopefully find a place unlike most where people were respected regardless of what their views were. So here I've stayed.

I'm self diagnosed and have specific reasons why I cannot look into getting formally diagnosed at the moment. Looking things up was like many here. The aha moment where you realize that your differences and many struggles in life all correlate to one thing and you're actually not alone. I had a very dysfunctional childhood and adolescence so there have been many times when I have questioned if all my issues have sprung from that. I have three other siblings and even though we share some similarities because of our childhood I have always been different in ways they were not. My mother described me one day when asked, "I don't know. You were always a weird, difficult child."

For the relationship part, I hadn't had a relationship before my ex husband, he was my first one. When I joined here he had already left me and our son. I met him at work. He was a transfer from the state he went back to. He asked me to tag along as he paid his bills and ran some errands one day and I just assumed he wanted someone to talk to. It never occurred to me that he was actually interested in me.

 

[Nitro]

People come into any forum with expectations. What are/were yours for this forum? How about other autism forums?

To be perfectly honest, I didn't come here expecting so many people reporting that they are in a relationship. I also understand that it can be irrational to think this way and maybe very much a product of my own frustrations, but the way members have portrayed it, it has felt to me like relationships have basically fallen on their laps in comparison to the sheer amount of failed effort that I've put into trying connect with people.

Also, I've noticed lots of self diagnosed people on different autism forums and admittedly feel skeptical at times but that doesn't make any one member less of a valid member to me, it just means that I'm not always so certain they understand what it's like to have the kind of symptoms that I do. In no way am I putting anyone on blast with this thread, and I'd like to stimulate some healthy dialogue about these kinds of things so we can understand each other better and share interesting things about what we expect from an autism forum.

Autism spectrum disorders manifest themselves with many variables to begin with.
Due to the subjectivity involved in a professional diagnosis,what is to say they are any more valid than the next?

 

[Suzanne]

The guy laughed in my face and said because I greeted them, they knew I did not have it.

Reminds me, when I went to a walk in central for mental health, to be recognised with social phobia and she laughed in my face. Said that I was picking up on words and making out I have social phobia and that if I truly had it, I would have someone with me. I tried to explain what I go through to get out of the front door, but she made me to feel like a complete fraud.

Well, I am far worse in France, and my dr right away guessed I have social phobia and my letter attests to that for the psychiatrist and thus, this time, I hope that I will not get laughed at.

My husband said that he hopes he can go in with me, due to the fact of the language barrier and he will describe my symptoms and let the psychiatrist come to his or her decision as to what is going on.

 

[Beguiling Orbit]

...I'm not always so certain they understand what it's like to have the kind of symptoms that I do.

@Propianotuner, let me give you something to consider: the first book on Asperger's Syndrome written in English was not published until 1991 and AS wasn't included in the Diagnostic and Statistical Manual of Mental Disorders until 1994. Some of us (I was born in 1964) had lived on this seemingly uninhabitable planet for 20-30 years (or longer) before a diagnosis was even possible. We had learned through decades of painful trial and error, failed relationships, getting fired from job after job, being excluded from social group after social group (and, for me, incorrect diagnosis after incorrect diagnosis) how to cope. In fact, I had learned those coping skills well enough that I never even considered my place on the spectrum until I was 51. I have tried to get a diagnosis, but would need an expert who can see through those masks I have built for myself so that I could survive. Since experts are hard to find, expensive and have waiting lists that number in years, not months, I would need to see a non-expert. I've done that, but was given tests that are intended for 3-year-old autistics. It became obvious to me that I somehow would have to unlearn everything I have learned, strip away those masks, and revert to a childlike state so that I could get a diagnosis. No thanks.

For you to state that my contributions on this forum are worthy of skepticism and that I'm incapable of understanding you (even though you claim that I'm a "valid" member of this forum) stings a little.

 

[kay]

I was just hoping for a place where people might understand meltdowns, difficulties with employment, sensory issues, know what it's like to just not know what is going on when everyone else in he room seems to have no problem. And that's what I got on this forum. Only place I can discuss all that, read what others have to say, and so far never bullied.

I'm not so surprised by others being in a relationship, it's the people with good, long term employment that amaze me. I have so many sensory issues and executive functioning type problems that I just do terrible with the whole job thing. I'm not a tech type at all, I am all hands on artsy and that is a difficult set of skills to find a use for anyone. Still, I keep trying, if others have figured it out then there is a chance I will, too.

My relationship did rather fall in my lap. It wasn't something I worked hard to get because I never, nor do I now, see a romantic relationship as something to go out and acquire. I just see it as something you might end up in if you just happen to meet someone you get along with just too wonderfully well to not just spend all your time around that person. It was very much an accident, he and I hiked with a group we both belonged to and we just ended up talking to each other all the time because, well, we just did. I doubt anyone would have ever set us up, we never would have matched up on a dating site, and people were all too curious about us dating. We are a strange couple I guess. Though people we didn't know before we got together always assume we are married strangely.

I was diagnosed at 27, rather early considering the diagnosis hadn't been available long at the time. I'm 45 right now and got very lucky finding a psychologist that realized quickly that my problems were not all anxiety and was well read enough to think of Aspergers. I certainly understand how people in my age group and older would have missed out on a professional diagnosis though because we all would have been misdiagnosed for years since nothing else was even thought of. While I still have a generalized anxiety diagnosis it is as a co-morbid, but before age 27 that along with all sorts of other ideas was
all I had. First I was labeled gifted, bored, and depressed, then social anxiety disorder and just immature, co-dependent, and back and forth through the anxiety disorders. That's what you had to deal with back then, and women still do quite often.

 

[Theta.G]

I didn't join with expectations. Saw a lot of incorrect information on PTSD in one of the threads and signed up to correct it. After signing up, realized that thread was locked. Then just kinda... stuck around.


I guess if there was any expectations now it would be that i'd be able to sometimes converse with other people of high I.Q's. Since aspies generally do have high I'Q's and a higher capacity for understanding difficult ideas and topics. Ones capable of understanding things that the layman cannot. To be around, like minds.

 

[Mr Allen]

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 Sony zealots and Nintendoids 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.

 

[Blue]

I strongly recommend not sharing any personal information on standard forums. There always are jerks so it's best to not draw attention.

 

[wadorama]

People come into any forum with expectations. What are/were yours for this forum? How about other autism forums? ...

I expected an exchange of experiences and ideas that might help define the scope of my problem. got that in spades, and with the bonus of friendly and real people. =o)

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

 

[Judge]

I strongly recommend not sharing any personal information on standard forums. There always are jerks so it's best to not draw attention.

Indeed. Being 100% transparent about your life and circumstances online is just a recipe for disaster. Honesty is the worst policy when you're dealing with predators you can't necessarily see.