Undiagnosed aspies- how did you come to the conclusion?

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Jetson
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08 Mar 2005, 9:00 am

flamingjune wrote:
http://growe.homeip.net/BaronCohen/MaleFemale.asp
Links to all four tests are on this page. ^_^
That page doesn't seem to exist any more. Do you have links to the actual 4 tests?


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MishLuvsHer2Boys
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08 Mar 2005, 1:34 pm

My scores on most AS online quizzes that brought me to self-diagnosis of AS after research into my childhood and all after my son was diagnosed on the autism spectrum:

101 out of 135 on the Roger Meyers test. (http://www.geocities.com/petexlnt/meyer.html)
46 on Baron-Cohen's AQ (32-50 indicates AS).
7 on Baron-Cohen's EQ test (average for women is 42),
69 on Baron-Cohen's SQ test (average for women is 24).
5 on the eyes test (http://growe.homeip.net/BaronCohen/Faces/EyesTest.aspx).
31 out of 60 on the Gaia test (http://members.chello.nl/p.cooijmans/gaia/).
Aspie Quiz (http://www.rdos.net/eng/Aspie-quiz.php):
Now- 179
Earlier -185

As well as meeting many of the criteria required for each category on the DSM-IV for Asperger's Syndrome.



Jetson
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08 Mar 2005, 2:01 pm

Thanks, Mish. I'd say your self-diagnosis is pretty incontrovertable with those scores. Mine: SQ=55, EQ=15, RM=93, AspiQuiz=134, GAIA=35. I saw a face-blindness quiz somewhere and scored 16/20 right, so I don't seem to be face-blind. I will probably have to see a professional to get a real diagnosis because my history indicates I have comorbid issues.


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1PeaceMaker
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08 Mar 2005, 4:41 pm

girl_interrupted wrote:
I see that many of you have taken the online tests. To throw a spanner in the works I must say that these are no substitute for a formal diagnosis. I am glad that this forum has a way for people to represent themselves as diagnosed or undiagnosed as I am wary of self-diagnosis as final option for people. I understand what it is like to identify as having AS and waiting for diagnosis and how it is difficult or some to get a diagnosis because of finance or location. I hope people can find the resources if they want a diagnosis but continue let us know their diagnosis is pending.

I do know that the wishes of the site owner is to be non exclusive and I know that these views may not sit well with them but I do think there should be room for discussion of these things.

Others choose not to get diagnosed so I ask why should you represent yourselves as having Asperger Disorder (Syndrome) if you choose not to get a diagnosis.

People can of course choose to represent themselves in what ever way they like but if you choose to represent yourself as part of the AS community then I, an AS community member, am also concerned with how you choose to represent the community I belong to.


I am going to give you my veiw of things. I am totally convinced I have AS and I am not getting a dx for a couple of reasons. The first and formost is that I am a mother in a country (USA) that discriminates against Aspies, and I have children. If I get a dx, and CPS finds out, they will want to stick their noses in my business and if they could, they would try to take my children. I don't want anyone to have that ammo against my family.

I KNOW I have AS. There is no denying it for me, or for my family. It is too obvious for me to hide from anyone. I don't care if you think I do or not. In fact, I almost prefer that you would wonder, rather than know. It is a very private, personal thing for me at the moment.

I need no dx to know I am left handed and female. A dx indicates illness, and I am not ill, or defective. A better, more dignified catagory besides Asperger's Syndrome (or "disorder") is also needed. Something more informative and reasonable, as well.



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09 Mar 2005, 1:43 pm

Because of its very special way Asperger affect someone and his/her life, I think that an adult that have it will simply "KNOWS" when he/she reads about it for the first time. The very first time i read about AS was like an answer to a lifelong question: "What's wrong with me ? Why am i like this and like that, and like this and like that...?"

All my life i knew i wasn't like everyone else and that they were all alike. I had identify very specific things like extreem honesty, naivety, strict adherence to rules, eyes are frightening, i never know what i should do in social event and always seems to do the wrong things, stimming, and so on.... Reading storys on the net of poeple having it was like reading my own life.

Taking the online test was just confirming it, and seeking an official dx is only a formality.



Jetson
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09 Mar 2005, 5:08 pm

coyote wrote:
Because of its very special way Asperger affect someone and his/her life, I think that an adult that have it will simply "KNOWS" when he/she reads about it for the first time.

That works for people who are highly typical of the syndrome, or who share the specific effects commonly discussed on here.

The DSM-IV definition has a lot of grey areas and those of us who are less affected or are differently affected have to make some assumptions about the diagnosis. For example, the DSM-IV reference contains terms like "qualitative impairment", "marked impairment", "encompassing preoccupation", "apparently inflexible" and "clinically significant impairment". There is a lot of wiggle room in those terms.

There are also quantitative terms: "multiple non-verbal behaviors", "at least two of the following", "at least one of the following", etc. It's easy for someone who's affected by 3 out of 4 to say they have "at least one". But if I don't know if my preoccupations are encompassing or am not sure if my "marked impairment" is a "qualitative impairment" then I can't tell whether I'm affected by all of them or none of them.

Last but not least, there is the fact that a lot of people ascribe other traits to AS and then use the presence/absence of those traits as diagnostic criteria. The DSM-IV says nothing about late development of gross motor skills, and yet many sites trying to explain AS invariably lump motor dyspraxia in as a "common symptom" (and lists like the AQ and Aspie-Quiz give points for it) when it is more accurately a "commonly comorbid condition" that has nothing to do with AS other than the fact that many people with AS also have dyspraxia. I *don't* have dyspraxia. That shouldn't impact on the certainty of my self-diagnosis but it does, if for no other reason than it lowers my quiz scores and says I'm "not as Aspie as everyone else".


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09 Mar 2005, 7:47 pm

Civet wrote:
What is it that makes you sure you have AS, even without a professional diagnosis?


Through my life, there have been many happenings that, when I started knowing about AS, they were simply fitting like the last missing pieces in my life's puzzle, so accurately it's almost scary. I wish I could justify a professional diagnosis, but I doubt that could change my opinions.

For example:

- I started to read aloud at age 2.
- I had no social abilities at all at school. I got some friends though, but no female friends. Of course I held the punching ball role at school. :? I still have problems with social encounters of the romantic kind.
- I take a lot of phrases literally, although I have been learning to recognize and deal with sarcasm.
- I didn't learn to drive until I was well past legal age.
- I have been told countless times that I am "living in a bubble", whatever that means.
- I think I read each and every encyclopedia my father had from beginning to end.
- I have always preferred to tinker with stuff at home than going to a party.
- I cannot take spontaneous decisions that disrupt my routine. My whole system falls apart.
- I have always had difficulties for fine motor skills (and even so, I learned to draw and earn a BFA degree in Arts at college. Go figure).
- I tend to synesthesic reactions (for instance, I link a song to certain images or vice versa)
- When I was on first grade, I was about two or three months ahead on knowledge respect to the other kids, and I was given advanced schooling.
- Most of the online quizzes I've filled out lean heavily on the "You're an Aspie" side.

I could go on and on like this, but that are some of the reasons that made me think that, when I first heard about AS and did my research, that all those happenings suddenly had an explanation and a reason to be, after 3 decades of living.


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Scoots5012
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09 Mar 2005, 11:10 pm

coyote wrote:
Because of its very special way Asperger affect someone and his/her life, I think that an adult that have it will simply "KNOWS" when he/she reads about it for the first time.


Finding out that one has aspergers is nothing short of life changing experience, it was for me at least. Around 1:15pm on the afternoon of june 1, 2004 when I first typed the phrase "asperger syndrome" into to google for the first time, I had no idea what to expect when I began reading.

An hour later, for better lack of words, nearly everything about my life suddenly made sense to me. I just "knew" when I started to read that everthing I read applied to me, and the more I read, the more connections I was able to make.

It just made sense!


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Eva
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09 Mar 2005, 11:29 pm

I am undiagnosed, but I recognized the disorder in myself before looking at my son. My son is diagnosed.

ABOUT people continuing to identify themselves as undiagnosed or diagnosed. Most of us who are undiagnosed are pretty honest about that and the realities of diagnosis. Sure there are people who maybe pretend, but most people don't. In the US, it's true, the CPS angle is a very real consideration. Availability of doctors and $$$ are also a consideration. My son was diagnosed for free, but it will cost me thousands of dollars.

I will get diagnosed, but who knows when. I promise I'll always offer that I'm undiagnosed as long as I am and everyone can take that I am an Aspie with a grain of salt. I think it's wise to be a little cynical and I think it's par for the course. Anyway, yeah, diagnosed or not, I'm AS/HFA.

-Eva




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10 Mar 2005, 12:31 am

I can relate to what many people have stated in this post.
My sister who has a diagnosed aspie son, encouraged be to look into it. Like Scoots said...google search has changed my life. The old me with no understanding of myself would critisize and jugde harshly anything resembling autie behaviour. Now when I rock and wave my hands in front of my face and make some noise (usually one tone constantly) all at the same time, I SMILE and say "I LOVE ME".
I have kept alot of my natural behaviour behind closed doors for years, afraid that speaking of it would mean a little white van with men in white coats would be rocking up to take me away and put me in restraints and on some pills.
Finally I found the freedom to accept myself. I found the freedom to LOVE myself.
I felt so relieved that I told some trusted friends that I may have high functioning autism. But none of them even know what Kanners is let alone ANYTHING to do with the spectrum of things. They did not want to hear about it. 2 people at work didnt want anything to do with me after telling them. Another got quite cross at me. Others just dont want me speaking of it. Others just turn on the pity, which makes me run a mile.

The others that didn't know about it either but want to understand are:-
My friend that has known me from 1st year high school (although we didn't catch up until 11 years after school) When I was 26
My schytzophrenic friend from across the street
My friend who's mother works with people with intellectual differences

No-one though is willing to totally accept it until I have an 'Official Diag'. which means if I speak of it from a personal point of veiw, I first need to get past that closed door of acceptance. The only way to open that door is to have a dx. The only way to get appropriate aide in job assistance is to have a dx. The only way to feel relaxed about speaking of it is to have a dx. The only way to get help with society is to have a dx.

So the dx is only inderctly for my benifit and more for the benifit of others to accept me and accept that I do need help and what areas I need help with.

So when I found this site, my life changed for the better. I can express who I am honestly without judgement. People dont get angry at me for talking about my traits. This is the only place I can talk freely without feeling like I first need to help people understand what Aspergers and high functioning autism is. And I finally have a scense that I am not a freak of nature. That I am ok the way I am.

It may sound like I had a number of 'friends' from this post but in truth I think that having friends means having a social network. I don't. I can't even get them to come to my house on my birthday. I don't tell them of things that I am upset about because they just have no idea where I'm coming from.
This site though IS my social network. And it gets me socializing in a way that I find comfortable and relaxing. I don't really understand what friendship is, but I think that what I have here comes the closest to friendship that I have ever had. I know I have never met any of you and probably never will, but this site has offered more than I have ever found out in the world. What I learn here, I do what I can to apply out there.

So what I mean in short is that without this site accepting me speaking and sharing of myself without a dx, I would be in a very serious state of depression. I think it is very important to trust a self diagnosis. There may be those few that have incorrectly dx'd themselves, but there are a great many more that have got it right. So in accepting that, the door is open for those that have nowhere esle to go.

ElfMan



synchro
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10 Mar 2005, 4:54 pm

What makes me sure I have AS?

I’m sure of it because AS is the only thing that explains my life-long behaviors. As far as I can tell, there is no other explanation, no other diagnosable condition that would indicate something else. Six years of “symptoms” being treated through psychotherapy and medication did nothing to affect change in my life. Obviously to me, my problems have a much deeper source than a common depression/social-phobia diagnosis would allow. When I first learned of AS, I was immediately intrigued. However, I decided to approach it gradually and from a skeptical viewpoint. In the end, I would say the experience has been revelatory. Each day I continue to learn more and each day what little doubts I may have are erased. I may not fit every diagnostic criterion perfectly, but the similarities between those formally diagnosed and myself are impossible to ignore.

Obviously, children have no ability to diagnose themselves and require a formal diagnosis. I believe however, that intelligent, introspective adults, with a lifetime of experiences to refer to will have the ability to diagnose this condition themselves. I have vast amounts of time to diagnose my own condition. A doctor may perhaps provide, an hour a week? At what cost? Obtaining a formal diagnosis is something I ponder daily, but increasingly I believe it may not be the right thing to do. Certainly, it would provide me with a label. But what other impact will a formal diagnosis have on my life? With citizen’s privacy being rapidly eroded in the United States, there is a very real chance that in the future I may not be able to hide a formal diagnosis. Revealing an AS diagnosis is something I want complete control over and not something I should ever like to see revealed in a background check.

I have yet to tell anyone in my personal life of my self diagnosis. The only people I have to tell are my friends and family. My closest friend I know will understand, but my family will be skeptical.



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10 Mar 2005, 5:11 pm

Now I can understand how people want me to be sure I am Aspie, and that is fine, but as I think over this thread there is something that sticks out to me, and that is the technocratic nature of wanting everything to be proffesionally diagnosed. It is just like people behave towards pregnancy.

Fortunetly you don't have to have a witness to certify copulation took place, but once you are pregnant, you are trained that only a doctor can say that you are, for sure. This dosn't matter to the American whether you are 1, 2, even 5 months pregnant, and this is your second kid. According to society, and from the books that I have read, only a doctor can be sure that you are. :roll: So, he "diagnoses" your pregnancy, and now you can tell the world. Folks, this is just silly. Even doctors can be wrong about the dx, and you can be just as accurate in dxing pregnancy if you know what you should see with yourself as any doctor could be, urine test or no.

When I get pregnant again, I won't need a doc to tell me I will have my 4th baby. I also don't need anyone else to tell me I am an Aspie, although, as Jetson pointed out, I should understand the terms and be relatively certain before pronouncing my opinion of myself. And yes, there are days when I just wonder a little, but then my husband comes home (NT) and reminds me just how aspie I am, just by being who he is.

I don't drive. I don't go shopping for the family. I just stay here, teach the kids, and try make decent meals on time, and keep the house tidy. My husband told me this morning, "You might as well be drooling in a wheelchair!" :(

He was pissed because I had neglected to check the windows to make sure the warm air would not escape at night. In the morning he saw that a window was still open, and not only that, he had just asked me to do 2 small but helpful things, and I forgot what one of them was. :oops:

He was in a bad mood after that, to be sure, and I doubt he really meant what he said, but he was expressing what he felt after seeing years of irratic, inconsistant and unperceptive bahaviour.

He gets mad that I will forget do the simplest things, or ignore the plainest body language, or become confused overt the simplest tasks -- and then, inform him of what was in the news that day, or of a newfound intellectual treasure I have gathered.

Now who is going to tell me what I already know? Even my mother knows what she sees in me. It is impossible to overlook.

Anyway, like I said, you can think whatever you like about me, but I should also be respected for thinking whatever I like about myself. I am, after all, an adult with certain inaliable rights and responsibilities.



Eva
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11 Mar 2005, 10:49 pm

Well, Asperger's Syndrome is a definite diagnosis, so maybe it does require a definite diagnosis, but maybe the question is how to describe people like us if we don't have a definite answer.

Is there a sort of holding tank term for people who are definitely different minded, but aren't diagnosed?

-Eva



Eva
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11 Mar 2005, 10:57 pm

I don't have time to find and take all the tests, but I did take the AQ test and I thought I would score pretty close to normal, but I got a 45. Jeesh. Don't ask me what normal is!

-Eva



ADZ
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12 Mar 2005, 9:37 am

To be honest, I doubt I am an Aspie. I'm just too cool. As for everyone else, unless they're diagnosed Aspies I doubt a lot are. I think a lot of people of above average intelligence, but lacking in social skills are looking for a label or diagnose to explain their deficits in social communication.



MishLuvsHer2Boys
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12 Mar 2005, 9:45 am

Thing is ADZ, one little fault about your statement is getting a diagnosis for many that are self-diagnosed as an adult is no small task as there are very little professionals out there knowledgeable enough in AS in adults to be able to diagnose official so there are likely more actual Aspies out there remaining undiagnosed than your statement would give credit for. If you don't think you're an Aspie, why insult those that are self-diagnosed on this forum especially when you doubt you're an Aspie? What does it matter if a person has an official diagnosis or self diagnosis to you? If you're too cool to be an Aspie, why are you here? That just makes no sense.