AS is only diagnosed if the person causes problems.

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aspie48
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16 Oct 2011, 11:48 am

I think there is an attitude in our society that if something has a problem you fix it, this is a fair way to think dealing with computers and cars, but should this logic be applied to people? I have seen in schools and such that they only diagnose people who misbehave, are profoundly ret*d, or have very low grades. most people would say this is ok because these kids need the diagnosis to receive help. this is true. i have noticed many mild mannered and successful autistic people go through life not knowing they have it. because of this all the stats collected about autism are inaccurate. and most of the perceptions are inaccurate too. more kids who have violent tendencies grow up to be criminals, and more kids who are ret*d or get low grades struggle in life, so people get an idea that we are stupid or evil. which is inaccurate because they are only looking at a small fraction of the diagnosed population. they essentially only want to understand the most alarming and worst parts of the issue. they look at the fraction within that fraction to get their data.



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16 Oct 2011, 11:58 am

In some ways I think this is partially true, but we've got to remember something.

If you aren't a problem for society, society has no reason to label or deal with you. If you know you have a problem, but society can't see it, the only recourse is for YOU, or at least those close to you, to do something about it.

What complicates things further is when a person is having difficulty, but has no idea there is anything amiss that can actually be addressed, and society doesn't see any problems.

It's not really anyone's "fault" when these things happen. The old adages, "The squeaky wheel gets the oil," and, "If it ain't broke, don't fix it," are how society, and even those of us who have problems we are unaware of, operate.

Someone does have to KNOW something is wrong, before anyone can do anything about it.


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aspie48
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16 Oct 2011, 12:02 pm

MrXxx wrote:
In some ways I think this is partially true, but we've got to remember something.

If you aren't a problem for society, society has no reason to label or deal with you. If you know you have a problem, but society can't see it, the only recourse is for YOU, or at least those close to you, to do something about it.

What complicates things further is when a person is having difficulty, but has no idea there is anything amiss that can actually be addressed, and society doesn't see any problems.

It's not really anyone's "fault" when these things happen. The old adages, "The squeaky wheel gets the oil," and, "If it ain't broke, don't fix it," are how society, and even those of us who have problems we are unaware of, operate.

Someone does have to KNOW something is wrong, before anyone can do anything about it.

this is true but again the person in question has to know that they have a problem before they can go get diagnosed. and the key to what i'm looking at is this phenomenon.



Mummy_of_Peanut
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16 Oct 2011, 2:42 pm

This is the difference between my daughter and I. She's a lot of work at home and doesn't do very much she's asked to. At school, she doesn't manage to finish anything within a given timescale and is obviously having difficulty with concentration. But, her academic performance tends to be average, so she's compensating somewhat with her high intelligence (she's twice exceptional). If her differences weren't so obvious, she would just be seen as an average student. She has raised enough concern to be placed on the waiting list for autism assessment.

I never caused any bother at all, neither at home nor at school. I just did everything I was told. No-one had any reason to suspect I had concentration problems, as I somehow managed to conceal it and, on the whole, was able to compensate for it in other ways. I was a very high achiever, until I hit the wall at high school. Although I managed to do very well, in comparison with the other kids in my year, I still feel I've under-achieved, both academically and in my working life. The fact that I was bullied for being different never caused any concern for anyone and no-one realised my shyness was a major problem (my parents didn't know and the teachers didn't care). Recognition of my problems has had to come from me alone. I got to 37 before being able to understand myself.

I worry that my daughter maybe isn't as high functioning as me, but I also think she's going to end up doing better than me, nonetheless. She's been recognised at a young age, so perhaps her difficult behaviour is a blessing in disguise. I'm determined to ensure that she's helped with things she struggles with and that her talents are nourished.


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16 Oct 2011, 2:49 pm

As a child, I was exceptionally well-behaved. In fact, I may have been a little TOO well-behaved.

Other parents used to tell my mom how jealous they were because she had SUCH a "good kid." A few time,s they even arranged play dates between me and their bratty children in the hopes that my "good sense" would rub off on their brats. I also never had self-care problems. If anything, my ability to take care of myself was much more advanced than my peers. For example, my mother brags about how easy I was to potty-train. She says she just took my diapers off, explained the concept of going in the potty; I nodded, and, from that point on, I never so much as had a wetting accident.

It's one of the primary reasons I was never DXed as a kid.


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MrXxx
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16 Oct 2011, 2:50 pm

aspie48 wrote:
MrXxx wrote:
In some ways I think this is partially true, but we've got to remember something.

If you aren't a problem for society, society has no reason to label or deal with you. If you know you have a problem, but society can't see it, the only recourse is for YOU, or at least those close to you, to do something about it.

What complicates things further is when a person is having difficulty, but has no idea there is anything amiss that can actually be addressed, and society doesn't see any problems.

It's not really anyone's "fault" when these things happen. The old adages, "The squeaky wheel gets the oil," and, "If it ain't broke, don't fix it," are how society, and even those of us who have problems we are unaware of, operate.

Someone does have to KNOW something is wrong, before anyone can do anything about it.

this is true but again the person in question has to know that they have a problem before they can go get diagnosed. and the key to what i'm looking at is this phenomenon.


Well, that is essentially part of my point. But how is not knowing one has a problem, and having, say, ADD or any other disorder, any different? If you don't know you have a problem, why would you go looking for help with it?

If you don't know your car needs its oil changed, you won't change it. And that will eventually cause serious problems. Maybe that's what you're getting at?

This is why schools are supposed to be screening children for potential problems. But even if they do, if the screening doesn't reveal anything, and it often doesn't even when there really is a problem, the same problem is there.

Honestly, I don't know that anything can be done to change that. One can't fix what one doesn't know is broken.

Not that "fixing" and "broken" are the best words to use in relation to Autism. I know they aren't, but I think you get the point.


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Mummy_of_Peanut
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16 Oct 2011, 3:03 pm

XFilesGeek wrote:
As a child, I was exceptionally well-behaved. In fact, I may have been a little TOO well-behaved.

Other parents used to tell my mom how jealous they were because she had SUCH a "good kid." A few time,s they even arranged play dates between me and their bratty children in the hopes that my "good sense" would rub off on their brats. I also never had self-care problems. If anything, my ability to take care of myself was much more advanced than my peers. For example, my mother brags about how easy I was to potty-train. She says she just took my diapers off, explained the concept of going in the potty; I nodded, and, from that point on, I never so much as had a wetting accident.

It's one of the primary reasons I was never DXed as a kid.


You sound just like I was, including the potty training. I could tie my own shoelaces at 3yrs and had loads of friends that I wouldn't have had otherwise, because they could count on me to tie their laces. Parents used to ask my mum if I could play with their child (or watch over them) as I was a good influence. I even remember being asked to a birthday party of a rich girl, who I didn't know. My school was across the road from her house. Her parents had noticed me and thought I was good friend material. You couldn't make it up. How I've managed to end up with a daughter the complete opposite, in this respect, I'll never know.


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XFilesGeek
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16 Oct 2011, 3:12 pm

Mummy_of_Peanut wrote:
XFilesGeek wrote:
As a child, I was exceptionally well-behaved. In fact, I may have been a little TOO well-behaved.

Other parents used to tell my mom how jealous they were because she had SUCH a "good kid." A few time,s they even arranged play dates between me and their bratty children in the hopes that my "good sense" would rub off on their brats. I also never had self-care problems. If anything, my ability to take care of myself was much more advanced than my peers. For example, my mother brags about how easy I was to potty-train. She says she just took my diapers off, explained the concept of going in the potty; I nodded, and, from that point on, I never so much as had a wetting accident.

It's one of the primary reasons I was never DXed as a kid.


You sound just like I was, including the potty training. I could tie my own shoelaces at 3yrs and had loads of friends that I wouldn't have had otherwise, because they could count on me to tie their laces. Parents used to ask my mum if I could play with their child (or watch over them) as I was a good influence. I even remember being asked to a birthday party of a rich girl, who I didn't know. My school was across the road from her house. Her parents had noticed me and thought I was good friend material. You couldn't make it up. How I've managed to end up with a daughter the complete opposite, in this respect, I'll never know.


Heh.

It's why I caution parents that children who seem a little "too good to be true" may be masking other difficulties.

For example, one of the reasons I was so darned "good" was because of my severe anxiety and the fact I couldn't tolerate yelling, especially when directed at me. And I rarely spoke. It's hard to get into trouble when you rarely speak.

They say AS is a condition of extremes. Maybe extremely difficult AS behavior in some AS kids is a direct counter-point to extremely "good" AS behavior in other AS kids. Just thinkin'.......


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17 Oct 2011, 3:49 pm

XFilesGeek wrote:
Mummy_of_Peanut wrote:
XFilesGeek wrote:
As a child, I was exceptionally well-behaved. In fact, I may have been a little TOO well-behaved.

Other parents used to tell my mom how jealous they were because she had SUCH a "good kid." A few time,s they even arranged play dates between me and their bratty children in the hopes that my "good sense" would rub off on their brats. I also never had self-care problems. If anything, my ability to take care of myself was much more advanced than my peers. For example, my mother brags about how easy I was to potty-train. She says she just took my diapers off, explained the concept of going in the potty; I nodded, and, from that point on, I never so much as had a wetting accident.

It's one of the primary reasons I was never DXed as a kid.


You sound just like I was, including the potty training. I could tie my own shoelaces at 3yrs and had loads of friends that I wouldn't have had otherwise, because they could count on me to tie their laces. Parents used to ask my mum if I could play with their child (or watch over them) as I was a good influence. I even remember being asked to a birthday party of a rich girl, who I didn't know. My school was across the road from her house. Her parents had noticed me and thought I was good friend material. You couldn't make it up. How I've managed to end up with a daughter the complete opposite, in this respect, I'll never know.


Heh.

It's why I caution parents that children who seem a little "too good to be true" may be masking other difficulties.

For example, one of the reasons I was so darned "good" was because of my severe anxiety and the fact I couldn't tolerate yelling, especially when directed at me. And I rarely spoke. It's hard to get into trouble when you rarely speak.

They say AS is a condition of extremes. Maybe extremely difficult AS behavior in some AS kids is a direct counter-point to extremely "good" AS behavior in other AS kids. Just thinkin'.......


I was the extremely GOOD kid that everybody's parents liked. It just came BACK to me that other kids used to call me MR. GOODY TWO-SHOES! Never thought about the idea that such an extreme was a means of masking problems.


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17 Oct 2011, 7:49 pm

Mummy_of_Peanut wrote:
This is the difference between my daughter and I. She's a lot of work at home and doesn't do very much she's asked to. At school, she doesn't manage to finish anything within a given timescale and is obviously having difficulty with concentration. But, her academic performance tends to be average, so she's compensating somewhat with her high intelligence (she's twice exceptional). If her differences weren't so obvious, she would just be seen as an average student. She has raised enough concern to be placed on the waiting list for autism assessment.

I never caused any bother at all, neither at home nor at school. I just did everything I was told. No-one had any reason to suspect I had concentration problems, as I somehow managed to conceal it and, on the whole, was able to compensate for it in other ways. I was a very high achiever, until I hit the wall at high school. Although I managed to do very well, in comparison with the other kids in my year, I still feel I've under-achieved, both academically and in my working life. The fact that I was bullied for being different never caused any concern for anyone and no-one realised my shyness was a major problem (my parents didn't know and the teachers didn't care). Recognition of my problems has had to come from me alone. I got to 37 before being able to understand myself.

I worry that my daughter maybe isn't as high functioning as me, but I also think she's going to end up doing better than me, nonetheless. She's been recognised at a young age, so perhaps her difficult behaviour is a blessing in disguise. I'm determined to ensure that she's helped with things she struggles with and that her talents are nourished.


My AS daughter is the same way...she got diagnosed at 13 because she rarely does things that she's asked to do and needs extra time to complete assignments. She's been diagnosed with ADHD since she was 7 or 8 (her concentration problems are worse than mine and also require medication...I started ADHD meds as an adult, which massively improved my organizational skills!). I was always a high achiever, and getting good grades was one of my obsessions (the meltdowns that happened when I did not happened at home, not at school). I didn't get diagnosed until I was in my 40s (just over a year ago). I sometimes think she'll end up doing better overall with coping than I do because she was at least diagnosed early.

~Kate


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17 Oct 2011, 8:45 pm

I wasn't noticed because of causing problems, but because of my parent's being worried about how much I was being bullied. I was brought to a psychologist because of that and she ended up saying that she thought I had Asperger's and that she'd not be able to help me any more because she knows she doesn't know how to help people with ASDs.



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17 Oct 2011, 9:31 pm

I was also in this "too good to be true" category as a kid. I followed rules strictly, such that once a rule was in place, there was zero chance that I would break it. I never asked for stuff at the store as per the lack of pointing at things criterion, and my parents thought that all the other children asking for candy and toys were spoiled brats. I did have horrible motor coordination, which held me back on the self-help skills, but that was just me being clumsy.



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17 Oct 2011, 9:43 pm

I was most definitely not "too good to true", I was a little rebellious punk who refused to anything that I felt was bellow me or that I felt was unnecessary and not fun. That's probably why I was sent to be tested, with funding from the the school. I've become a lot more tame since then. So yeah, its probably only the people who are causing problems who are going to get diagnosed without them seeking out a diagnosis.



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17 Oct 2011, 10:15 pm

The kids who don't stand out and can cope with the academics tend not to be noticed as much. This is unfortunate, but 30 kids to one adult isn't exactly a ratio that helps the teacher too know their students all that well.

I made it through school without being picked up by staff, although I do distinctively remember going to the special ed room once and having to play with paper and scissors for some unknown reason. The fact my meltdowns were all internal shut-down withdrawal type scenarios didn't help.


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17 Oct 2011, 10:34 pm

MudandStars wrote:
The kids who don't stand out and can cope with the academics tend not to be noticed as much. This is unfortunate, but 30 kids to one adult isn't exactly a ratio that helps the teacher too know their students all that well.

I made it through school without being picked up by staff, although I do distinctively remember going to the special ed room once and having to play with paper and scissors for some unknown reason. The fact my meltdowns were all internal shut-down withdrawal type scenarios didn't help.


I remember being sent to a special room with all sorts of weird contraptions and laminated cards that I think I used for communication by people with difficulty speaking and other stuff on the walls before I was integrated into the school district's special education system at random times, and only a few times at that. I remember there was the squeezing rolling thingy and I hated that because I felt like I was being molested in it. I think I was sent to such room once or twice after being entering the special education system, which I managed to graduate from in the middle of the seventh grade.



Last edited by Ganondox on 17 Oct 2011, 11:12 pm, edited 1 time in total.

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17 Oct 2011, 10:42 pm

So of you people that didn't have many outwardly showing symptoms as a child, how hard was it to finally get a diagnosis? Were there a lot of misdiagnoses along the way?