Post if your Dx is "Not sure if I have it or not"

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Interesting thread. I'm too old for AS to have been picked up at school, so spent forty years labelled as "shy and awkward" by everyone, including me. Then I came across a description of AS by chance and spotted pretty quickly (though I didn't believe it to begin with) that it explained me a whole lot better than "shy" ever has. It explains my dad and my cousin too if it comes to that.

Since then the obsessive interest has kicked in, I've done a ton of reading and I am confident I meet the diagnostic criteria. Except that after 40 years of coping, and adjusting my life unconsciously to avoid the things I struggle with, I actually get by pretty well most of the time. No real friends of course, just acquaintances from work/church who I never see socially and wouldn't usually even recognise if I saw them out of context. And no chance of promotion at work for the last 15 years (or the rest of my life) because I'm - validly - pigeonholed as a geek who couldn't ever be a manager. But it works for me, and my long suffering family have learned to put up with me most of the time. As a result, despite ticking all the boxes, I'm not at all sure I would get an AS diagnosis if I tried. And I don't (at least at the moment) feel that I need to try anyway because I don't need the "credentials" of a formal diagnosis to access any help.

Although in my own mind I think I categorise myself as "Have AS - undiagnosed", I'm a bit uncomfortable to lay claim to being Aspie for sure, when not only do I not have a formal diagnosis but I suspect that for these "coping" reasons I wouldn't easily get one. Does that make sense?

Complete sense.

I put not sure because I am not as I have never been diagnosed. I had some trouble in school from talking out of turn to just out right not being able to undrerstand my teachers.
So school was tough! K-12 I barely graduated. At one time when I was in the 6th grade I was placed in a special class for hyper kids; and I didn't even realize why I was put into this class until later on in life!

I have had to learn to control my "hyper urges" and over active thought process. I enjoy alone time maybe a little too much. I like to talk, sometimes, but can rarely find anyone who will listen to me and my outlook. I have also read so many topics from people on WP that remind me of myself!
My mother has told me of a time when I was in kindergarten, that my teachers complained about my talking out in class, and said I was "slow"; so she took me to see a psychiatrist and all she will tell me from that is that I took an IQ test and it was high, but nothing else.

At the end of the day, I think could possibly have adhd and or ocd.

i didn't even realize it was a choice. (i'll have to check and change mine to that.) i'm self-diagnosed NLD at this point because there's always been such a big gaping span between my verbal iq and performance iq. but i also notice i have a lot of aspie traits. (i stim, have had sensory integration problems, etc.)

but in general--even though i'm obsessive about these topics (both NLD and AS), i'm really not 100% sure of anything.

Nobody really knows for sure.
Dx in contention.

Was assessed for AS and labeled in the past, but decided to try and ditch it.
I didn't like being labeled in a negative way.
I also resented the fact that my personality traits and those of my family were being twisted into negative "deficits".
Sure, these may have applied to me on a very bad day, but these weren't how I viewed the situation at all.

The label wasn't helping me, it was just making my family upset and people more hostile towards me. It was exacerbating the problems. I was seen as "defective" and "in need of fixing". The label was stigmatising. Mentioning AS has only driven people further from me, led to misunderstandings and anger on all sides.

Throughout there was lots of misunderstandings and passing around of blame.
I was also confused, socially and just generally as to why people weren't openly telling me how to improve my situation. They just expected me to automatically deliver results in environments that I wasn't happy with.

Perhaps some people just aren't built to cope with highly demanding social situations, but are really capable at doing other stuff, who knows?


If there was another option on the drop down menu such as "past assessment, now not sure". I would have selected that one.
I'm not really that happy about the word "disorder" appearing either.
Even if I was subsequently (re?)diagnosed I wouldn't select the "disorder" option.


I'm not disordered: I'm a human being.


In fact, being negatively labeled and hence being treated as "less than human" in the past is what's fueled my depression.

This is why I'm reluctant to seek help.
Any help I've sought thus far seems to have made things worse and/or people more hostile.

I'm pretty sure I have it, I have at least 85% of the issues and characteristics, but I'm not officially diagnosed. Sometimes I related to the people here so well that it feels like they're describing me.

I am leaving mine, I suppose at neurotypical. I have some things in common with Aspergers, but I'm enough not like it to tip me the other direction evidently. I have the large head, or hat size. I frequently experience problems working out what people mean by what they say, when what is said could have more than one intended context. I stim. I think in pictures, and struggle to translate my thoughts into words, but I mange to. I have sensory overload issues, and there are other similarities relating to memory recall and other issues, but I have enough NT like qualities evidently to function in that world. Its not that I am not detail oriented, but I am more big picture oriented. I experience anxiety issues, but they don't overwhelm me, though they almost did when I was a child. I am fairly good with body language though I sometimes misinterpret people's expressions. I am fairly good at perceiving attributes of a person's personality from viewing their photograph. To me it feels like I am feeling the person behind the image, even though it is only a photo that I am viewing. I'm empathic. I have problems with misinterpretation of external nonverbal ques, but I compensate with fairly good interpretation of internal nonverbal ques. I tend to, or have learned to think in the language of visual symbol, and much of my humor is visual pun. Of course my humor is also very dry, and often people who think in words often misinterpret it. I honestly believe that if I submitted myself for aspergers Dx, I would come out as borderline. And particularly after reading and hearing about experiences like those of AmberEyes I see no point in wasting my money.

well, today I changed mine to "have asperger's-diagnosed" because today I was. so there, I don't have to think about it much now, because I was assessed by an AS-specialist....

I've got the impression that people (including supposed experts) in the past simply haven't known how to deal with someone like me. I forgive them for this: I was probably just as confused as they were about the whole thing. This might be true for others too.

This is what I don't understand about the concept of being diagnosed.
How is it supposed to help exactly if people are just going to make assumptions and stigmatise you more for being diagnosed?

How can someone possibly know more about what's going on in my own mind than I do?

The truth is that I never wanted to be labeled in-spite of all the social difficulties I had.
If the people doing the labeling and the people around me don't attempt to try and appreciate things from my perspective (and just base their analyses and help on stereotypes etc) then what's the point?

What's even more bizarre is that I share personality traits and values with my family that seem to superficially match the criteria. Some are socially quite clueless. Yet none of them ever received help for their social difficulties and none of them were ever called "socially disabled". They just had to struggle on as best they could, which is why I feel it's selfish for me to ask for help if they had to manage alone.

This is what I don't understand.
How come that kind of life-style and belief system had suddenly become unfashionable or even "sick"?
I don't get it.
People are people aren't they?

The best help I ever received was from people who truly accepted me as I was and said that they didn't want to change me, even though I seemed "different".

AmberEyes, I know what you mean. I was diagnosed with something too and I never wanted anyone to talk about it. My mother has always been very anxious about any possible diagnosis and glossed over my issues because it was easier for her.
I began to associate my label with terrible things and bad behaviours. Whenever I was having the most fun, or what I thought was fun, someone would chime in "Has she had her ritalin today?" Hearing that ruined my good mood. I was the only one with Ritalin and I felt like enough of a pariah the last thing I wanted to hear spoken outloud in front of everyone was, "Has she had her Ritalin?"
I got to the point, I didn't want to hear about Ritalin, hyperactivity or anything else outside the norm even though I was never considered "the norm" in the first place. I began to develop this huge phobia about my differences.

Maybe I think too much, but considering my behaviour as a child, if the Ritalin medication had been freely available as it is today, I almost certainly would have been put on it.

I shudder at this thought because I think about relatives and other people I've known with similar hyperactive tendencies who'd have been "given the slipper" or the cane back in the old days. If they'd been kids today, I'd be willing to bet quite a bit of money that they'd have been put on Ritalin (because "having the sense beaten into them" has been outlawed).

I just can't help but wonder about the effect of the environment (physical and social) on people's "misbehaviour".

Put me in a fascinating and supportive environment such as a uncrowded planetarium or an art room, and I calmed down. I focussed my energies on the task and not on having to interact with other people so much. It was enforced social interaction at grouped desks, teamwork and "circle time" etc that I found really irritating/confusing. I tended to act out when I was left out; couldn't concentrate because there was too much chatter; couldn't understand the other kids/the teacher; didn't understand why I was being told off or was generally overwhelmed by the sheer numbers of kids I was told to interact with all at once. That's when I became really hyper and "naughty". I remember feeling really restless and creative at times too. I always wanted to do my own thing and thought school was boring for a while.


My attention was focussed on details in the surrounding physical environment.
The teachers wanted my attention to be focussed on the other kids.
I thought school was a building made of bricks and cement kids went into to learn stuff or their parents would go to prison.

I was wrong, apparently school (as the teachers saw it) was a community of people who learned from each other by socialising and telling each other how to behave in subtle ways in the playground. If you deviated from the unwritten confusing rules that no-one ever told you about, you were labeled as "strange" and had to be held back with "help".

I guess my first school probably made me feel inferior because they thought that something was "wrong" with me rather than just "different". It became a self fulfilling prophesy.

They didn't consider the effect that the environment, overcrowding and teaching methods were having on me. They blamed all of my problems socialising, handwriting, motor skills and whatever on me. They didn't even consider the idea that by helping me they might be drawing attention to and thus unfortunately exacerbating my "issues".

I had a hard time concentrating in class. Assignments left me confused. I couldn't follow the directions half the time so sat and daydreamed instead. Or doodled. Most of the time I wasn't encouraged to participate anyway. One time I was put in the back of the class room just because a neighbor kid was in the same class and her mother insisted her be in the front and threw a fit at the idea of me or her kid sitting anywhere near each other. Instead of her kid being moved to the back, I was. My problems following directions were exemplified and I was too far away from the chalk board to see anything. It was a complete waste of my time being there.




My teachers wanted my attention focused on schoolwork but most of the time it was directed toward useless activities such as pencil chewing, nail biting, doodling or talking to classmates.
My mom used to tell me I had to go to school because it was the law and she could go to jail if I didn't. I never wanted to go in the morning.



The teachers might have thought that but did not extend that philosophy to me. Instead they wanted me to be quiet and do the work but I couldn't. Most of the time I didn't know what was going on and didn't have the patience to read assignments. This was in grade school. I improved as I got older but grade school was the time when my AS was the most inhibiting. I still don't understand how I learned enough to write this or how my spelling improved. My handwriting was horrible too, and one thing that upset me was my atrocious handwriting (that I was sure made me look less intelligent than the other kids even though I knew I was smarter, so did my mom). My handwriting improved substantially after grade school. I used to erase my horrible handwriting only to smudge and leave tears in the paper which frustrated me to no end. I wanted everything to be nice and neat like everyone else's and was upset when that didn't happen.
As for "rules" I didn't even think about them at this time. I was too busy being "me" without considering there were subtle rules to interaction. I was myself, for better or worse. Often, it was for worse, only.



That's one thing I got from grade school, the impression that I wasn't different, I was just "wrong". I got left with the feeling something was "wrong" about myself too, and everyone else was "right".



The kind of help I wanted I couldn't get. I wanted to stay home all day with my own teacher explaining everything to me and be free to do my schoolwork when I wanted. My mother tried to help with homework but by day's end I was too overloaded to figure the work out, especially math. If I were to meltdown after school, it was during math. homework. Another thing was my neighbor's mom did her homework for her and I thought, logically if her mother does homework she doesn't understand my mother can do the same for me. No. That's another thing that upset me. I didn't understand why everything seemed much more difficult for me. My thinking was, since I am having such a rough time I need my homework done by someone else more yet no one would do mine. So, I obsessed on that a lot and got all depressed and upset about how unfair everything seemed.

I chose the not sure if I have it or not because that is how I feel.

Looking at the schizoid personality disorder I see it matches pretty closely to myself so maybe I could ahve that. The problem being I do not like people asking me personal questions nor do I like answering them so the chances of visiting a doctor are nil, call me paranoid but I don't trust people to be confidential.

Whether I have something or not it doesn't bother me but it would be interesting to see if someone has come up with a pigeon hole for people who match my personality.

This is very different from the experiences I had with school. When did all of this "teamwork" become requisite for learning? We all studied on our own and got tested on our own. Very rarely did we have to do any teamwork. Yikes, maybe I'm just old...

Early 90s educational reforms and beyond.

I remember people telling me to "join in" with activities, but me not knowing how to, or getting it wrong. There was lots of emphasis on getting along with other people and sharing things.

Throughout school and further education, the most humiliating and demoralising thing for me was not being able to find a group to work in when it was required.

I was perplexed at how everyone else just seemed to "magically" find a group to work in so easily.

I put 'Aspergers- diagnosed' because I was diagnosed autistic as an 8 year old but it doesn't have an 'autistic diagnosed' option, and I feel that I'm more Aspergers since I've been working so hard at understanding the world.

But I'm not feeling confident about it even though I was diagnosed because a. I'm so obsessed with fitting in with the NT world. I'm not entirely able, but mostly can fake it if I don't do anything that will make me meltdown. and b. the support people where I am now don't seem to accept it, and my psychiatrist never mentions it. Since the autism diagnosis, I've had so many different diagnoses and nobody can agree on one.
Also I've heard now that a lot of people call themselves Aspergers when they're not, so-

All in all I am feeling very confused. But I have to say a lot of what is said on WP resonates with me, especially about meltdowns and stimming.

Did this even make any sense?

Last edited by activebutodd on 26 Jul 2009, 11:51 am, edited 2 times in total.