For those with undiagnosed Aspergers...

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Joined: 31 Jul 2010
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25 May 2011, 11:02 pm

It may be a self-fulfilling prophecy, but looking at my personality and the way I was when I was younger I fit all the criteria. I believe I know as much or even more about autism than many doctors because of my ability to focus intently on things. I also, obviously, know myself pretty damn well so I think I'm able to diagnose myself with autism. The tests they use are just observations of behavior - and I've seen enough kids and read enough about autism and asperger's to diagnose myself.

Verdandi
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25 May 2011, 11:15 pm

iheartmegahitt wrote:

Yeah funny thing is, they diagnosed me as having ADHD and a learning disability in second grade. But I think I proved everyone wrong in high school. I was able to pass my quizzes and tests easily without reading textbooks, doing homework or even following written classwork. My teachers were amazed by this and wondered how I could do it. They knew I also could write in a superior way then most people at my levels but the only thing they didn't understand about my writing is that I couldn't write anything they wanted me too... for example, if you told me to write a 400 word essay about saaay... cats and dogs I would only be able to write half a page. It also made it hard to do current events as well. My writing abilities are a gift because I can write down every little thing on my mind that makes others feel amazed with my challenges and disabilities... they find it hard to believe that someone like me could seem so mentally, emotionally and developmentally challenged could do such a thing. I've written tons of journals too but they were just things on my mind that I could talk about but could only write down. I mean I'm pretty much in the age spectrum of eight and ten... yet I write with superior ability. So it baffles alot of people...

But I can see how it feels too, when people tell you that you aren't autistic, undiagnosed or not, especially if you can do something everyone else finds so out of the ordinary that it brings such a shock.

My mother tried to get me diagnosed with ADHD at an early age (not sure how early) but the doctor ignored it. Said both my sister and I were "developmentally appropriate." Which is why both of us were diagnosed with ADHD later - my sister two or three years, me over thirty. This same doctor refused to treat my cousin's "worst headache in her life" because he said she was just seeking medication. I don't recall that he was apologetic when she died of a brain aneurysm a few months later.

That's similar to my writing, too... Unless I'm medicated. Unmedicated, I just write about...whatever, but I write it well enough to impress people (someone here said the other day if I can write like this, I can work...yeah). Medicated I can focus on things actually did freelance writing work in the past - although I cannot make a living at it.

And my abilities are so uneven. My mother had me tested to counter the whole "learning disability" thing (as well as decided that my problems were caused by poor eyesight that resolved two years later), and I was tested as either gifted or genius (I think gifted, but my mother insists genius). And I can do all these things that people peg me as intelligent, but I have trouble with many "activities of daily living." I feel like there's some basic skill or thing that would bridge the gap between what I know and what I can do, but typically I can't manage it. I had trouble when I was self-medicating my ADHD.

FTM
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Joined: 16 May 2009
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26 May 2011, 12:31 am

iheartmegahitt wrote:

How come you don't get an actual diagnosis from your primary doctor or talk to someone who can help you decide?

Money. My doctor thinks I have it but getting a DX costs time and money and I'm short of both.
"or talk to someone who can help you decide" That's where this forum helps out.

Bodrik
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26 May 2011, 12:51 am

I like to be diagnosed, but:

For some reason the only local psych place I was referred to is a strict working hours place. Nobody when I'm getting ready to leave for work, nobody manning their phone at lunch, and nobody when I get home from work... and the dang line is always busy and off I'm sent to the answering machine when I can't even leave a message cause I can't even get a basic answer answered (Who is your local specialist on asperger's in adults?).

Apparently the people with issues in this world are assumed to not be working real jobs!! !

MooCow
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26 May 2011, 1:01 am

I'm self diagnosed, getting diagnosed is a difficult and expensive process so for now I'm staying self diagnosed.

There is something going on with me, my guess is AS because nothing else fits quite as well.... I might be wrong, it could be something else, like lasting brain damage from getting kicked by a horse. I just don't know, but until I can get officially checked out I'm going with aspergers.

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BassMan_720
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26 May 2011, 1:09 am

I'm prety sure I am AS. I am too like my AS daughter not to be. I share the symptoms and pass most of the online tests convincingly. It's highly likely that my late father was also AS. It explains alot about him.

I do not want an official diagnosis. I have been very successful in my professional life and have a well respected and responsible position. An official diagnosis could knock me off the ladder. Since realising I have AS, I now know better who I am and why I am different to most people I know. Having an official diagnosis would serve no purpose for me whatsoever.

y-pod
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26 May 2011, 2:44 am

I'm waiting to be diagnosed. The wait list is 6 months+ and this is for private diagnosis. We're pretty certain because I have two diagnosed sons, and they're quite a bit like me. We have read a lot of stuff over the years and know these things pretty well now. Sometimes I'm not sure why I need the label, but I just have to know.

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Aspie mom to two autistic sons (23 & 22)

Tsukimi
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26 May 2011, 2:58 am

SammichEater wrote:

How do I think that I have it? Well, it's something like this.

Occam's razor: "simpler explanations are, other things being equal, generally better than more complex ones"

Good one!

Actually I asked my shrink whether I might have AS and he said I do match the traits but he didn't want to "label" me, that is why I don't have a diagnosis.
Meeting other docs makes me cringe since I had bad experiences with people saying: "But you are not autistic, you ***speak so well***", or "you are not completely emotionless", or refusing to have me as a patient because my speech pattern sounded pedantic and not spontaneous, which was annoying for them. :wall:

Okay, this is out of topic...

Actually I might look for being tested by a specialist but 1. I have none in my area 2. it gives me too much anxiety 3. I would not ever use it anyway (I am quite functioning + we have very bad services = better to cope alone), so that the only point would be not having to explain the whole story every time... since as for self knowledge I had the chance to learn quite a lot, being kind of obsessed with the topic. So I do know it's not only about being unsociable - I know people who are more introverted than me but they do not have sensory issues, unusual focus, etc.

Then I am also the arrogant type who claims she knows more than professionals (<-- joke).

jpfudgeworth
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26 May 2011, 4:28 am

mori_pastel wrote:

And you have to think too what would be harder, to be told that the answers to all these questions, to why you don't fit in and why things are so hard, is that there is something fundamentally different about you that you cannot change because you are on the autistic spectrum, or that there is absolutely nothing wrong with you at all, that you are just an unlikable person who doesn't have difficulties but is just plain difficult. To be told that you are part of a community of brilliant, misunderstood people who make great contributions to society or that you are simply a one-of-a-kind freak who can't do things right because you're just not trying hard enough?

In a way, it is easy and it is a relief to contribute the difficulties you face in life to something that is out of your control, something that was decided before your birth, something you can never change. It is incredibly hard to look yourself in the eye and recognize that everything that is wrong with you is your own fault and that you are the only thing standing in the way of your own happiness.

I can't speak from the perspective of someone who has been diagnosed on the spectrum. I'm certain it comes with it's own trials and tribulations, some of which may be more difficult than I could ever imagine. But I do know that I myself live with these doubts and fears, that maybe there is nothing wrong with me and maybe I really am the only thing standing in my way to a "normal" life. It's hard, not knowing. And it's nice believing in something bigger than yourself that's out of your control.

I am making plans to seek a professional confirmation, and I know how painful it will be if the end result of my search is that I don't have AS. Knowing about AS has changed the way I see myself. It has helped me to better understand my own strengths and weaknesses and answer questions I have carried for a long time. But when I walk into that office there is a good chance that this understanding will be ripped away from me again. I am afraid of that. And because I am afraid of losing my understanding, I am patient with those still seeking theirs. ; )

What you've said here really speaks to me. I am afraid that I'm not diagnosable, that I am just normal enough for everything I relate to in autism to be unimportant. Nevertheless, I can't see myself like I did before I realized that it's not normal to fear eye contact, or to be obsessed with parts of things, or to struggle so much with basic human connection.

Reading a few pages about the autism spectrum changed the focus of my self awareness forever.

OJani
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26 May 2011, 5:27 am

I think I inherited most of the worst traits of both of my parents in terms of ASD, plus I'm a twin, and there might have been some problem with oxygen supply to my brain due to the umbilical cord having been wrapped around my neck.

Let's see...

- Sensory issues with hearing and smells I couldn't attribute but to my bad habits, being short of any better ideas
- Meltdowns that really frightened not only other people but myself too, I haven't seen this so thought stupid behavior in others, except for perhaps my uncle-in-low, who shows some traits of ASD anyway. I think I'm worse at this than him, nevertheless.
- Eagerness to live in the safety and warmth of childhood
- Learning disability, problem with memory (like garbage), inattentive behavior, constantly forgetting things
- Compulsiveness in certain solitary activities (playing with construction toys, tinkering, pc games as a child).
- Better than average logical thinking, giftedness in maths and physics. Achieving more by thinking in models rather than by rote memorization.
- Parents and teachers explained my hyperactivity on classes by stating I don't listen because I know already, having high intelligence (which, I think, I don't have that high)
- Observable traits like lack of eye contact, staring, avoiding loud noises, playing with everything at hand, looking at subjects differently weren't given any particular notice. Except, I was told now and then to look in the eyes of people, unless I want them to believe I'm lying or queer for not doing so.
- I don't like body contact even with my family members. I don't like handshake either.
- I'm really bad at social interactions. I like to be around people who are off at least a little themselves. I always enjoyed talking to certain adults when I was a child, later I felt better being with friends not of my age.
- My speech is, hmmm, not good. I think my tone of voice in itself strange, plus I still stutter and stammer here and there, my articulation is poor, and my active vocabulary is somewhat unusual. Also, I like to make strange associations, call subjects on substituted names the way only I understand, use logic and phrases that are only hardly understandable for others.
- Even when I try hard, I can't identify people, nor know their names at will, at least I'm much worse at it than others. It happens that I remember later at a time after I failed.
- Unusual body posture and gait. The way I pose my arms, legs, hands, fingers is also unusual. Clumsiness.
- Shyness. Inability to make relationships, having a crush on somebody, or express my feelings towards somebody I like. For a long time, I was unsure about my sexual orientation.
- Satisfied with being alone most of the time.
- Something like executive dysfunction, unable to practice what I should do in everyday life (although, I'm not totally convinced it is not laziness).
- Strange affection to accustomed things in life. Places, clothes, carpets, equipments, people, etc etc.
- Satisfied with routine tasks in life most of the time, but, to tell the truth, I like some change sometimes too.
- Other little quirks like partial shutdowns, mood fluctuations, unreasonable anxiety, stimming by smells, touch, music etc.
- (and what I left out)

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Another non-English speaking - DX'd at age 38
"Aut viam inveniam aut faciam." (Hannibal) - Latin for "I'll either find a way or make one."

Last edited by OJani on 26 May 2011, 5:44 am, edited 1 time in total.

OJani
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26 May 2011, 5:39 am

As for diagnosis, I seek for one. It'll be an unofficial or semi-official one, for an official diagnosis is beyond reach for adults here where I live, as far as I know. Also, I don't want an official dx, because I understand those who are skeptical about its usefulness. I'm scheduled to be evaluated this autumn. I hope it will settle down my feelings and thoughts, so I could live with it easier.

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Another non-English speaking - DX'd at age 38
"Aut viam inveniam aut faciam." (Hannibal) - Latin for "I'll either find a way or make one."

lyricalillusions
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26 May 2011, 7:32 am

How do you really know you have asperger's or a form of autism without getting a proper diagnosis?
I don't know. I just highly suspect. I believe I have it because reading the symptoms of Asperger's is like reading an autobiography of my life. But I don't claim to actually have it because I haven't been able to get a diagnosis up to this point. I wish my parents had done something about my issues when I was a child, but because they didn't I'm now stuck as an adult trying to manage a life I'm ill equipped to deal with because of all of my ASD-like issues.

How come you don't get an actual diagnosis from your primary doctor or talk to someone who can help you decide?
I have no health insurance, no income, and free ASD testing is not available, at least not anywhere in the U.S. that I know of. I don't have a primary doctor.

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?Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.? _Theodor Seuss Geisel (Dr. Seuss)

evil_eyes
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26 May 2011, 9:10 am

To answer the first question:

I do not know. It sucks, I want to know, but I don't. I highly suspect I do, since reading the symptoms shook me to the core the first time I saw them.
I post here in WP because even if I don't have a DX, I identify with aspergers and how people struggle with it, I understand how people are and I feel understood by kind souls who've replied to my angsty, painfully, bleedingly emo posts in The Haven.
Whether or not I have it, this is the only place in the world where I've met people who literally have the same problems as I do--the anxiety, the eye contact, the painful experiences, the meltdowns, I could go on and on...Even if some doctor swears on his career that I'm an NT who just happened to be shy and awkward, I'll still post here. I'll probably b***h about the doctor too

as to why I don't have or don't seek a dx, it's simple--
I want the validation, but it's not easy to just go and get one. It's not like this is well-known throughout the world like adhd. I tried talking to a guidance counselor, she was just humoring me and it's still one of the most painful things I've gone through. I'm traumatized U=_=
I can't just go up to someone and say, "Hey guess what, I'm a high-functioning autistic, so stop being such a b***h to me!"
I'd sound like an attention-seeker...or a hypochondriac.

Tsukimi
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26 May 2011, 9:56 am

mori_pastel wrote:

I agree. But still, how can it be I tried VERY hard to change all my life and it didn't work? I really wanted to become an extrovert, to have a lot of friends and have social skills - after my sh*tty childhood I so much wanted being someone totally different, no matter how painful it was. But I am still the same person, no matter how hard I try. So even if I didn't have AS, it would mean I have something kind of similar that I cannot change anyway - not a great difference.

Trencher93
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26 May 2011, 10:49 am

iheartmegahitt wrote:

How do you really know you have asperger's or a form of autism without getting a proper diagnosis?

Process of elimination. No other condition fits except for AS.

For an adult, who has spent frustrating decades knowing he's different but not why, there is a definite "a-ha!" moment when AS is finally discovered and the description is compared to life experiences. I've seen this theme repeated many times.

iheartmegahitt wrote:

How come you don't get an actual diagnosis from your primary doctor or talk to someone who can help you decide?

For adults in the USA, getting a diagnosis is expensive. Given that there is not really any benefit to be had from a diagnosis, and a lot of problems (involvement with the mental health system, spending huge sums of money), it's just not worth it.

mb1984
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26 May 2011, 11:15 am

SammichEater wrote:

How do I think that I have it? Well, it's something like this.

Occam's razor: "simpler explanations are, other things being equal, generally better than more complex ones"

Now, ever since I can remember I have known that I'm different. Sure most people have a few differences here and there, but nothing quite like me. Alone, each difference wouldn't be anything unusual, but there are many of them. But the thing is, all of these oddities about me can be described under aspergers.

It just makes sense that I have aspergers and not a bunch of other disorders combined. While both are possible, aspergers is much simpler, and therefore is most likely correct.

Don't get me wrong, the doubt of it actually does drive me absolutely crazy, but I live in the US, where a diagnosis would do me absolutely no good. It would require a lot of time and money to get one, all for nothing good in return. Isn't it ironic we always think were the best country to live in?

This is exactly how I feel. I KNOW I am Aspergers, because I think it is more likely to have one disorder that encompasses everything, rather than being diagnosed with each issue individually. I guess that would just be the long way of getting to the same point, Aspergers just gives the reason for the symptoms. What I guess I am trying to say is, I'm thankful to know that my difficulties are just symptoms, not actually problems of their own. It makes it easier for me to mentally deal with the load of "being me".
I live in Canada, and I am fortunate to have a great healthcare provider. I am seeking diagnoses, I actually had my 2nd EEG this morning (24 sleep deprivation this time). Even without diagnoses, I know who I am now. I went 26 years without knowing, so I have no doubt about it, I have found the reason I am who I am.

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