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Ellingtonia
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11 Feb 2012, 5:00 am

I was recently diagnosed with Asperger's at the age of 20, and though I am pretty sure this diagnosis is correct I am still not 100%. The main reason I have some small doubts left is that even though this is a developmental disorder starting in childhood, the issue was never raised while I was a child. I also have very poor personal memories (I can remember facts quite well) and so specific memories from my childhood and mostly absent. Looking back there were some things that can be interpreted as warning signs, but no one seemed to pick up on them at the time. These include very poor coordination (terrible ball skills, late to tie laces, late to ride a bike etc.), late talking followed by learning to read very quickly, high vocabulary with a sometimes disjointed/awkward sentence structure, a series of special interests, and others. I was born at the beginning of the 90s, so Asperger's was a recognised diagnosis while I was a child and awareness of milder forms of autism was spreading, but perhaps wasn't as well known as it is now.

I wanted to hear from some people with similar experiences, specifically what early symptoms they did (and didn't) show, and why they think they weren't diagnosed earlier.



so_subtly_strange
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11 Feb 2012, 5:43 am

you basically hit the nail on the head, in the 90s the spectrum was more known than before, but still not widely known. you are a couple years younger than me so we were children during the same time. high functioning autism spectrum disorders are commonly missed until later in life, i think this is significantly related to that we have difficulty vocalizing our feelings. we may know we are different on levels, but we dont think to much on it and just work with what we have at our disposal. as for myself I have not yet gotten my formal diagnosis, but I had an informal diagnosis by at least one of my grade-school teachers, who was himself an aspergian. This was something i recently discovered, my parents dismissed/denied the diagnosis at the time. My mother still has a very poor understanding of the premise of asperger syndrome, with no interest/ anti-interest in learning more about it.
I apologize turning this to a story about myself, but i do have a reason. While on one hand it may be possible that the people around you were not aware of autism, it may be possible some people noticed and you never knew. Perhaps they spoke with other people about suspicions, perhaps not. They may have spoke with your parents about it, but the idea and the misunderstanding of its implications, may have led them to be frightened of the idea as my parents were.

my symptoms as a child:
i lived in my own world, had little interest in socialization. I was not totally adverse to friends, but they fell into their place, i did little to seek them out. In school up to 5th grade I only had one best & usually basically only friend. I found a new friend each year, and they rarely came to my house. I also had some friends in my neighborhood i would play with, but they were in their place, and i would not necessarily interact with them if i saw them at school.
sports were always a total brick wall to me. I can have fun with physical activity, but team playing just completely does not work, and my coordination also nihl.
i learned to tie my shoes when i was in 2nd grade, i learned to ride a bike in 4th. not sure if that is terribly late, but it seems a little on the late side.
my special interests have mutated over time. in early elementary it was drawing, in late elementary it was writing. in middle school my writing mutated into philosophical obsessions which i explored by writing about them. Late middle school through highschool i became interested in biology, which is a continuing interest of mine. I have had many other obsessions but those are the core ones over the years.

i feel like i made this post into a biography which i didnt mean to do. let me know if you have any other questions



Conspicuous
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11 Feb 2012, 6:11 am

I was diagnosed a few months ago at age 25. As far as I can remember back, the signs were there, but not strongly enough that my mom pursued a diagnosis for me. Plus, she was a single mom raising 3 kids and my older brother was a nightmare, so my problems kinda got put on the back burner. In early 2011, after I learned about AS but before my official diagnosis, I talked to her about it and she confessed she had suspected some form of autism when I was young but had never had the means (we never had health insurance) to look into it.

Additionally, around the same time, I told my brother-in-law about my AS. His reactions was to laugh at me (not in a mean way, but rather a knowing laugh). When I asked why he laughed, he told me how he and my sister had discussed that a while back.

The point of that story is this: although family and friends growing up may suspect autism, they are unlikely to tell you about their suspicions unless they're very sure or have a way to help. I suppose this is because they fear offending you or worrying you needlessly if they turned out to be wrong.


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Ellingtonia
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11 Feb 2012, 6:38 am

Don't worry so_subtly_strange that's exactly what I wanted, to hear about other's experiences. I myself got mastered lace tying in 3rd/4th grade, and bike riding around the same time or a little later I think.

I know my parents took me to see someone about my late start in speech, though I have trouble getting the details as to how old exactly I was at the time. I know I started talking late, and then went through a phrase of being able but unwilling to talk (e.g. I would prefer to use my invented hand gesture to show I was wanted a drink rather than ask for one) but my parents don't seem to remember exactly when one phase ended and the other began. They don't seem to remember exactly what the speech pathologist said either, but it can't have been anything too serious as there weren't many appointments and no other referrals. By the time I started school I was talking fine and reading fluently as well. I don't have any memories of being unable to read something.

Socially I had one close friend from about k-5 (one at a time, the person changed a few times), while the rest of my class were more acquaintances during grade 5 my circle kind of expanded gradually. I was never bullied though.

And actually, Conspicuous, I have discussed a bit with my parents and they were very skeptical. I tried to convince my mother to take me to get a diagnosis and she was outright saying she didn't think there was much chance I had it. During my diagnosis though she spoke to the doctor for about 40 minutes about my history and came out convinced I had it. Now though she's softened a bit and uses phrases like "mild Asperger's tendencies" and "some aspects of autism" so I don't know whether she thinks I have Asperger's or not anymore.

You did mention though that your older brother was a nightmare, and that's somewhat applicable to me. My older brother had issues with depression and my younger brother is/was quite severely dyslexic, whereas I was very quiet and always did very well in school, so I guess I just didn't attract (or want or ask for) much attention. I was always the "how was school today?" - "fine" type of person.



Lepidoptera
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11 Feb 2012, 12:54 pm

I'm very much older than you are and grew up in the era of you were normal or you were institutionalized. I'm too old to bother with a diagnosis and not even sure I'd qualify but I closely identify with what a lot of people write here.

My mom has told me that I didn't talk until age 3 and I was perfectly happy to play alone. I did have neighbor friends that were my age. I was also very quiet in school and did well. I discovered early on that the best thing in school was to act like the other kids and not draw attention to myself. I still managed to attract some bullies.

Anything social was a mystery to me. I mostly followed the lead of the other kids. I managed to get into trouble with my parents quite often over social behaviors, especially when I was little older, like around 10. I can remember thinking that I didn't need punishment, I just needed some explanation as to what to do. I was completely an outsider in high school social activities, mostly being unaware they even existed. My main interest kept me afloat though, providing a little social interaction with some other kids who shared my interest.



OJani
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11 Feb 2012, 4:50 pm

Ellingtonia wrote:
I wanted to hear from some people with similar experiences, specifically what early symptoms they did (and didn't) show, and why they think they weren't diagnosed earlier.

In my case it was quite simply a time when neither ADHD nor any kind of HFA was recognized. I was a kid in the 70s and 80s of Eastern Europe. Though there were special ed classes, my overall good learning abilities prevented me from placing together with mostly challenged kids, even though I had severe behavioral issues and showed pronounced ADHD traits at classes. Later on I've learned to be alone mostly and had only playmates, most of them were outsiders themselves. Since I improved my grades gradually no one thought having no friends was a big issue for me. So, despite I've always felt I'm different I was only diagnosed last year December.


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Agemaki
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11 Feb 2012, 6:25 pm

I was born in the late 80s, so again not many of my teachers in elementary school would have known much about it. My teachers did recognize that I was different from other students (from what I heard from my parents via parent-teacher conferences). Apparently I was very quiet, perfectionistic, and very interested in learning: an ideal student. I think that some of my teachers also noted that compared to other students they could not "read" me or otherwise tell how I was feeling.

My parents didn't know much at all about higher functioning forms of autism, though since educating themselves on the topic they think that explanations like Intense World Theory pretty much account for my behavior as a child (and my mother suspects she might be on the spectrum as well as a few of her brothers, though none of us have received a diagnosis)

In terms of developmental issues, I said my first word at 8 months of age and was always an extremely verbal child. Words were always fascinating to me, my mother has said that she remembers feeling the same way as a child. I was always very sensitive, easily becoming distressed if I received too much attention or I was in an unusual social situation. I also remember that shoe-lace tying was very difficult as was bike riding which I didn't learn to do until I was 9 or 10. Sports were also both uninteresting and horrible for me as I seemed to be somewhat lacking in coordination. At the beginnig of 6th grade I read at a college level and school in general was something that I found enjoyable. I did not really understand how people made friends though; most of the friends I had over the years were students who just moved in and had no other friends. I generally did not make friends with students who were already in the school and who had friends of their own.

I think one of the reasons for the difficulty I had making friends as a child was due to differences in interests. I've been interested in drawing/writing/telling stories since a very young age. I recall dictating a story for my father to write down--regarding man-eating birds--when I was 3 years old. As an older child I also became highly interested in playing computer games, although my peers were growing interested in boys. At 11 years of age I became interested in Japan and though my other interests have remained that has become the interest that I intend to pursue in a career, hoping to attend grad school in Japanese history.

So I think that the reason why no one thought to get my tested was mainly because I excelled in school and did not show any delay in language skills. (I do have trouble speaking/responding quickly though it is not especially noticable since I am rather quiet in general.) Social skills and motor coordination apparently did not strike my teachers as being as significant as scholastic performance, hence they weren't that worried. Both of my older brothers were a bit on the nerdy side and had some issues with making friends, especially earlier on. One brother was a pretty serious computer geek (neglecting hygiene and all that too) and the other won a state math championship as a high school student. So while I did have significantly more difficulties than my brothers, I didn't seem that strange comparatively.