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Adamantium
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04 May 2014, 9:01 am

Rocket123 wrote:
tarantella64 wrote:
Maybe part of my "meh" about diagnosis is that I look at a list like this and think that parts, if not all of it, apply to nearly every adult I know.


I was wondering this myself. Then, when reading the diagnostic criteria (DSM-IV at the time), I thought, “this does not sound all that unusual”. As, most of those I do know (both as a child and as an adult) would be considered “social mistfits”. But, what if, in reality, we “social misfits” represent the majority. And that those who are socially “able” are the minority. But, we are influenced (by, say television) to believe otherwise. How do you know?


I thought that too, but it turned out to be bs. Denial.

You know because you see it all around you, every day. New people come into your work or class or neighborhood and connect with the people already there in a way you never could and never will. They do it naturally, like breathing.

There is a qualitative difference. Taking that onboard is part of the freedom that diagnosis can bring, though it sounds like you are still wrestling with that. I am not bothering with that anymore--

That feeling of being different that I had all my life? A valid perception.
Those moments when I felt marked out and set apart and couldn't understand why? Autism is why.
When the train would fill up and the seat next to me was still open? My clothes were clean, I had showered and brushed my teeth--so why were people just choosing not to sit next to me? Because I am a bit weird and it puts them off--no problem, that is my nature.
That conversation that suddenly stopped when I came back from lunch? Yes, they were talking about me behind my back and for good reason.

It's much better just facing it. It changes nothing, but it changes everything and mostly in a good way.

You really are at liberty to deal with reality as it is, rather than hoping that somehow, despite all signals to the contrary, you are OK, acceptable and normal.

You are not "normal," so be OK in yourself, as you are.



tarantella64
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04 May 2014, 11:31 am

Adamantium wrote:
Rocket123 wrote:
tarantella64 wrote:
Maybe part of my "meh" about diagnosis is that I look at a list like this and think that parts, if not all of it, apply to nearly every adult I know.


I was wondering this myself. Then, when reading the diagnostic criteria (DSM-IV at the time), I thought, “this does not sound all that unusual”. As, most of those I do know (both as a child and as an adult) would be considered “social mistfits”. But, what if, in reality, we “social misfits” represent the majority. And that those who are socially “able” are the minority. But, we are influenced (by, say television) to believe otherwise. How do you know?


I thought that too, but it turned out to be bs. Denial.

You know because you see it all around you, every day. New people come into your work or class or neighborhood and connect with the people already there in a way you never could and never will. They do it naturally, like breathing.

There is a qualitative difference. Taking that onboard is part of the freedom that diagnosis can bring, though it sounds like you are still wrestling with that. I am not bothering with that anymore--

That feeling of being different that I had all my life? A valid perception.
Those moments when I felt marked out and set apart and couldn't understand why? Autism is why.
When the train would fill up and the seat next to me was still open? My clothes were clean, I had showered and brushed my teeth--so why were people just choosing not to sit next to me? Because I am a bit weird and it puts them off--no problem, that is my nature.
That conversation that suddenly stopped when I came back from lunch? Yes, they were talking about me behind my back and for good reason.

It's much better just facing it. It changes nothing, but it changes everything and mostly in a good way.

You really are at liberty to deal with reality as it is, rather than hoping that somehow, despite all signals to the contrary, you are OK, acceptable and normal.

You are not "normal," so be OK in yourself, as you are.


I wonder if we're talking about different things, then.

I have no problem connecting and making friends, and one of the things I like best about this class I'm teaching is how well we all seem to get along. Which is tough, because science kids, not the most effusive. And they started out quiet, which was unnerving. But when I walk into the room now, there's hubbub going on, and -- well, obviously, there's an age/station difference, and I'd feel weird describing myself as a friend to them rather than mentor/teacher -- but I'm part of that conversation, too, and it's fun. I like my neighbors, and am part of other communities, too. I'm aware that people see me as odd/brilliant/sometimes-rude/faintly-alarming (I have a lot of energy and -- well, one of the scientists, introducing me to another scientist, said, "This is T, she....makes things happen."). It never occurs to me, though maybe it should, that people are talking about me behind my back. Can't really imagine what they might say or that I'd be interesting enough to talk about. I mean they must, but...I don't know, that's not interesting to me.

(I don't like having people sit next to me on the train/bus, but as it fills up I grudgingly put my backpack on the floor and then the seat's filled, phooey. They always sit on my coat and want to have conversations with someone ten feet away while I'm reading. But the bus I take these days looks like it exclusively serves a research plantation.)

For me, the biggest difference I perceive between me and other people is that I have things I want to do. Like I can see them, can see how they should go, and how great they'll be, and then, a surprising proportion of the time, I make them happen. As I've gotten older and been put in more influential positions, it's been a little startling to see how much I can make happen. It's not usually the intent -- usually it's "here's a cool thing to do," and then all of a sudden it touches some very large number of people. Most people are hella uninterested in this, want a nice bit of gardening and a movie. Which is an idea I'm much more sympathetic to now than I was 20 years ago; it'd just drive me crazy as a way of life. I'm quite sure that when I look back, the thing that'll look batshit is that I've done most of this while being a single mother alone with no family or money. And the maddening thing is that the things I accomplish won't (with the exception of raising my daughter) have been the things I actually wanted to do, and am feeling increasingly urgent about. But the things I'm doing make enough money for us to live on, and the other things don't, so I have to put them off a while.

As for being okay....Long ago, I used to teach aerobics at an upscale gym, the kind of place populated by 30-50somethings with money. Often at the back of the room there'd be a new person totally swaddled in sweats, and by about 20 minutes into the class this person looked like she (or he, sometimes) was dying, because, you know, a room full of sweaty adults jumping around, it gets warm. And the new person would be both out of shape and way overdressed. After class I'd find a way to approach the person and try to be welcoming, and then make the point that, you know, you don't have to be fancy and spandexed-up for this, regular high-school gymwear will work, but it's not actually healthy to get so overheated in class, plus not fun. And sometimes the person would explain that he or she was too embarrassed to show themselves, that they were out of shape, overweight, what have you. (Must've been a fun disclosure to make to a three-pound teenager who'd just spent an hour bobbing around in front of the class.) So I'd tell them to have a look, next time, at where people were looking. People had a laser focus on themselves in the mirror. They weren't checking out other people, judging; they were totally self-absorbed. Nobody cared. Unless you're falling over other people, nobody's watching, no one's holding secret auditions for a Ms. Buff calendar. And almost everyone's self-critical.

I don't know if it helped. Usually people would relax after a few classes and wear more appropriate clothing and then I could stop worrying about their passing out. But I think it's true. As far as your being okay...I don't think anyone's that interested, measuring you. The downside, of course, is that probably no one's that interested, which sucks ox balls when you need help.

...

Sorry, this is incredibly long. I work with scientists and artists, right? And have done for a long time, so of course I'm used to hyperfocused, awkward, dorky, occasionally tantrum-throwing people who're massively competent in one or a few areas of their lives and a complete shambles in others. For various reasons, lots of them aren't much for eye contact. Or contact period. These are all people who're capable of talking for hours at a time about the thing they enjoy, whether you asked or not (and the maddening thing is they're often very smart, so you have to listen, because they're telling you something worth hearing). But what strikes me is that at this point all of them have enough sense of how they must work together, associate, and how the world works, to get by in a practical manner and have homes and families and all this sort of thing. (Though some are single people who still get the family assist.) I know this isn't most of the world. It just appears to me a non-emergency to be this way. The emergency seems to arrive when you can't make it into a world like that, for whatever reason, and are left in a perennial high school. Or when you can't sense the world around you well enough to feel how survival works, or when it's all too overwhelming to manage.



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04 May 2014, 4:29 pm

Adamantium wrote:
I thought that too, but it turned out to be bs. Denial.


All I am suggesting is that, perhaps, what is considered “normal” (in terms of “social communication and social interaction”) comprises a very narrow subset of the human population. That, perhaps, our notion of “normalcy” is impacted by media and celebrities. How would we know otherwise?

Adamantium wrote:
It's much better just facing it. It changes nothing, but it changes everything and mostly in a good way.

You really are at liberty to deal with reality as it is, rather than hoping that somehow, despite all signals to the contrary, you are OK, acceptable and normal.

You are not "normal," so be OK in yourself, as you are.


I fully “get” that I would not be considered “normal”, under most definition of “normalcy” (regardless of whether that band of normalcy is narrow or broad). And, I agree that it is acceptable to be myself and not be swayed to do things or behave in a certain way because it is not considered “normal”. Though, recognition of this fact does not eliminate the feeling of emptiness. Which is why I continue on this journey of discovery.



Adamantium
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05 May 2014, 9:17 am

Sorry, Rocket123--
I was answering the idea I found in your thoughts that resonated with some thoughts of my own. The "you" I was using was not really you but "one" because I was really trying to explain my own thought processes and recognitions around these ideas. I did not mean to make it seem so personal and pointed at you.

Tarantella64, I envy you your social facility. I can only imagine. Even when I have good conversations with people and know them for a long time and every outward sign of friendship is there, I am unsure of the quality of the relationship. It is unsure to me.



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05 May 2014, 3:17 pm

The hardest part about seeking an adult diagnosis for me has been trying to pick apart which parts of my personality have been forged by experience and which are a result of nature. Its impossible. I look back at my childhood and see aspects of asperger's but my memory of my childhood is hazy.

It's only once I hit 14 that I would say my traits became more pronounced and now living independently im noticing more and more where my impairments are.

Who can tell what is neurological and what is experiential?

Not only that but we develop coping strategies which can hide traits. Perhaps you learn to look at lips to fake eye contact. Or perhaps you practise gestures and inflections, try on different voices and personas until you get it just right etc etc.

Then there's the fact that aspies with predominantly creative personalities tend to express differently. Im a mix of both creative and technical so im definitely not "run of the mill"


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05 May 2014, 4:04 pm

Yes, but you will have to trust the professional. They´re experienced in separating those things.


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Rocket123
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05 May 2014, 8:57 pm

Adamantium wrote:
Sorry, Rocket123--
I was answering the idea I found in your thoughts that resonated with some thoughts of my own. The "you" I was using was not really you but "one" because I was really trying to explain my own thought processes and recognitions around these ideas. I did not mean to make it seem so personal and pointed at you.


Oops. I guess I didn’t catch that. Which happens. By the way, I did not take personally at all.



tarantella64
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05 May 2014, 9:09 pm

Adamantium, I never really know what people think of me unless they say so out loud. Post-high-school nobody seems to be rude enough to just tell you they don't like you, or whatever. I just assume that if I had a good time, we're good. No doubt that's sometimes incorrect. But people are crazy. I don't get too worked up about it if they're not in a position to stop me from feeding and housing my kid.

And it turns out people do talk about me sometimes when I'm not there, but I'd never have guessed the sorts of things they talk about. Apparently my students had a nice conversation about my skirt today after I'd left the room so they could fill out evaluations. (They liked it and toyed with putting down something about "wears cool skirts". It just occurred to me that they may have done something they weren't supposed to do, chatted with each other about what to put on the forms. Oh well.)



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09 May 2014, 8:14 am

HI all,

I've live in the UK and was referred by my GP for diagnosis, which took about 4 months.

I have a question regarding the diagnosis though. I've not had a great few months and finally contacted a help group based nearby and have arranged an initial meeting. I asked if there was anything that I needed to bring with me and they said that reports of my assessments would be helpful (but not necessary). I didn't get anything like that after my diagnosis (Which was 4 years ago now), so if anyone from the UK has had a similar experience I'd appreciate any advice.

Thanks



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11 May 2014, 1:42 am

The way I got diagnosed I wouldn't wish on anyone.
My oldest son started having issues when he was 3 years old and was kicked out of preschool. We knew he was different from other kids his age but downplayed it until this event. His pediatrician shrugged us away claiming his oddities were normal and looking at us a young parents who knew nothing about parenting. Enter Kindergarten and things have gotten more and more out of hand with him, he got removed from school weekly and the teachers and school district gave us the same parenting speech we'd heard for the last 2 years. "Control your son. Set boundaries, use x,y, and z discipline methods." We had been, but nothing seemed to help him. Entering first grade he had bit himself so badly that there were bruises up and down his arms. We were already under CPS scrutiny because of injuries inflicted upon our younger son by our older son. Stitches, sprains, and bumps and bruises... CPS removed our three children and said I had to get a mental health evaluation because in my childhood and teen years I had been a ward of the state and been diagnosed the gamete of mental health disorders (ADHD, ODD, Bipolar 2, PTSD chronic, BPD, NPD, among others). So they basically saw me as the cause of our son's issues and thought I had lashed out at him in some fit of rage. A few months later they started to realize that it wasn't us. Finally someone saw what we had been begging for help for, for the past 3 years. But they suggested he had Asperger's syndrome. I'd heard of it, but really never knew what it was. Autism, I thought, was a neighbor kid I had seen growing up who seemed mentally impaired. So naturally I looked it up. It was an OMG moment like no other. Everything I had been experiencing my entire life was spelled out in words I could never come up with under this Asperger's definition. I went to two diagnostic assessments that concluded I had PTSD chronic and some sort of personality disorder not otherwise specified, although the second person to evaluate me said that it's possible I "had Asperger's as a child but it can't be diagnosed in adults.". So I started seeing a counselor on a sliding scale and after a few sessions she told me that my plethora of diagnoses didn't fit what she was seeing in me. She told me she clearly saw OCD and had me scheduled to see the attending Psychologist two weeks out at no charge. He confirmed what I already knew along with the diagnosis of mixed anxiety and depression. Everything else is now void and we have our oldest son back. He has Asperger's syndrome. Our younger son whom we had all thought was just shy and quiet has HFA and our three year old daughter is showing alot of the same characteristics of our younger son. We are getting them back here shortly once services are in place for them so we don't have to struggle with the system anymore. It sucks what we went through but funny how it all worked out in the end.



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12 May 2014, 9:27 pm

If you are in the U.S., look for regional medical insurance programs or low-income clinics. The latter can sometimes refer you, or have psychologists on staff. Immigrant status may or may not be a factor.

My county medical insurance automatically enrolled me in Obamacare when it started and I'm poor, so I won't have to pay for anything. All I had to do was ask my primary care physician to refer me.

For moderately to severely affected individuals in the U.S., some states have Regional Centers for developmental disabilities that will evaluate you for free.



portis
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20 May 2014, 1:23 am

Medi-cal should cover the evaluation since the affordable care act went in force.I am about to see that very soon.Though this is in California.I think there couple more states that expanded medicare.The way i realized was strange.Started Paxil and then started to read.I just always have been thinking that i cant have autism because of the stereotype in films.What should be my strategy until i get diagnosed.And should i tell the people about it since i have told my colleges that i have severe social phobia and agoraphobia and panic attacks.However i don't think anything really is going to change after i get diagnosis.exesuse my english.its my seventh year in USA and im 31.But i feel like im on 7 :) about the language. Ok thanks.I probably can get diagnosis here faster since im getting it on other non related to AS forums a lot hahha.



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07 Jul 2014, 3:38 pm

Update:
So after griping in session after session, my psychologist asked one of his professional colleagues to give me a super discounted assessment. It STILL will be $700 but that's far cheaper than the almost $3000 it would have cost. Since, I am adult and do not need all the other stuff for accommodations in school and so on the tester is only going to test the aspergers plus another personality test to rule out the borderline once and for all. I will update y'all further.


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Adamantium
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07 Jul 2014, 5:19 pm

Excellent news.
This is very like what happened to me. May your discoveries in this process prove helpful.



structrix
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18 Jul 2014, 9:22 am

It's confirmed now! Autism spectrum disorder; high functioning autism or what would have been called aspergers! My questions have been answered. Now, I am just waiting for the paper with the diagnosis written on it.


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18 Jul 2014, 10:10 pm

structrix wrote:
It's confirmed now! Autism spectrum disorder; high functioning autism or what would have been called aspergers! My questions have been answered. Now, I am just waiting for the paper with the diagnosis written on it.

The immediate post diagnosis period is confusing, exciting, promising and full of emotions some of them I don't think they have invented a word for yet. Your mind is racing but it is important to feel these emotions, just let them happen and don't fight them. High emotions even positive ones are stressful so be careful, get your rest etc. That said, this only happens once enjoy it and make the best of it.


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