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Tuttle
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07 Oct 2012, 11:45 am

onks wrote:
It's actually not the physical stuff. It's just the psychological effects that result from it
and merely the way you are treated.
If you are treated like a disabled child you'll go bust most certainly.
And eventually you'll never return from there.


No. In this world, in this society. That isn't enough for all of us.

I was treated like I was normal. I was not treated like a disabled child. The first time I got any sort of help was in high school. I was bullied before that point in time, but bullied like a normal child was, not like a disabled child was.

I went beyond what I could handle. I cannot take care of daily living tasks. I am unemployable. I cannot take care of keeping myself fed. I cannot do what I need to do.

As for those "physical stuff" that its not. try living a day in the body of someone with sensory issues and tell me that the physical stuff isn't disabling. The sensory aspect is absolutely something that is a huge problem.

We've had threads with polls before, do you have more problems of people overestimating your problems or underestimating them; do you have more problems of people treating you more disabled or more normal. Every one of them has had most people respond with they've had more issues with people treating them like they're normal and ignoring their disability than treating them like they're disabled.

I am disabled. Admit that I'm disabled. Don't expect me to be normal. But respect me with my disability and don't think my disability is something that makes me a lesser human. I am not capable of everything that other people are capable of. People not understanding my disability has caused some large misunderstandings because people think I should be capable of these things. But I am disabled, I am deserving of respect despite that, I am neither less than them nor greater than them, and I am just another person who happens to be autistic.

But treating me like I'm normal will only cause more problems in my life.



onks
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07 Oct 2012, 12:11 pm

Tuttle wrote:
onks wrote:
It's actually not the physical stuff. It's just the psychological effects that result from it
and merely the way you are treated.
If you are treated like a disabled child you'll go bust most certainly.
And eventually you'll never return from there.


No. In this world, in this society. That isn't enough for all of us.

I was treated like I was normal. I was not treated like a disabled child. The first time I got any sort of help was in high school. I was bullied before that point in time, but bullied like a normal child was, not like a disabled child was.

I went beyond what I could handle. I cannot take care of daily living tasks. I am unemployable. I cannot take care of keeping myself fed. I cannot do what I need to do.

As for those "physical stuff" that its not. try living a day in the body of someone with sensory issues and tell me that the physical stuff isn't disabling. The sensory aspect is absolutely something that is a huge problem.

We've had threads with polls before, do you have more problems of people overestimating your problems or underestimating them; do you have more problems of people treating you more disabled or more normal. Every one of them has had most people respond with they've had more issues with people treating them like they're normal and ignoring their disability than treating them like they're disabled.

I am disabled. Admit that I'm disabled. Don't expect me to be normal. But respect me with my disability and don't think my disability is something that makes me a lesser human. I am not capable of everything that other people are capable of. People not understanding my disability has caused some large misunderstandings because people think I should be capable of these things. But I am disabled, I am deserving of respect despite that, I am neither less than them nor greater than them, and I am just another person who happens to be autistic.

But treating me like I'm normal will only cause more problems in my life.


Hmmm.
You're probably right with your arguments...

But how does the "treatment" look like? Is the standard treatment usually autism friendly?
I'd doubt that. It's very tricky, because everybody is different.
I tend to think that NT's are quite lost when dealing with that kind of issues

Many children though have parents with similar history.
And they should be in principle be really capable of understanding better the issues.

What I actually meant is that you should treat aspie children right
and that would involve taking them seriously and with respect.
Explaining explaining explaining, if necessary.
Trying to understand them.
(NT Children's reasonings are usually ignored)
Not expecting too much.

But, letting them feel that they are not normal is a really bad start, isn't it?



libertyseas
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07 Oct 2012, 12:56 pm

I like the discussion that is going on in this thread. If you think back to your childhoods what would you like to have your parents do differently? For me I hated the way my parents disciplined and neglected me, so I am very appreciative, positive and present as a parent. However I don't know if I am making mistakes with my own kid. I don't view her as disabled in the least. She achieves her milestones, her only I guess "quirk" is that she really needs to keep moving. I've gotten so used to that and accomodate a lot of it during our day that I don't see it as a quirk at all.

So if you could go back and tell your parents/guardians what not to do what types of things would it be?



onks
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07 Oct 2012, 1:24 pm

libertyseas wrote:
I like the discussion that is going on in this thread. If you think back to your childhoods what would you like to have your parents do differently? For me I hated the way my parents disciplined and neglected me, so I am very appreciative, positive and present as a parent. However I don't know if I am making mistakes with my own kid. I don't view her as disabled in the least. She achieves her milestones, her only I guess "quirk" is that she really needs to keep moving. I've gotten so used to that and accomodate a lot of it during our day that I don't see it as a quirk at all.

So if you could go back and tell your parents/guardians what not to do what types of things would it be?


Actually that is exactly what I meant with aspie parents could be the perfect supporters.

You are aware of your problems and of hers. But you still see this as normal, it doesn't bother you.
Most parents won't even know that they are aspies if they are.
They'll just end up fixing everything like NTs because they think it has to be done so.

I think I have got much more tolerant also when I got to know about my aspergers.
I was already before, though, quite a bit, but maybe not as much.

libertyseas wrote:
So if you could go back and tell your parents/guardians what not to do what types of things would it be?


Treat your child more in an adult way and try to understand the needs on a basis of that.
Aspies are not used to being seen as a child that is ignored



emimeni
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07 Oct 2012, 3:18 pm

libertyseas wrote:
I like the discussion that is going on in this thread. If you think back to your childhoods what would you like to have your parents do differently? For me I hated the way my parents disciplined and neglected me, so I am very appreciative, positive and present as a parent. However I don't know if I am making mistakes with my own kid. I don't view her as disabled in the least. She achieves her milestones, her only I guess "quirk" is that she really needs to keep moving. I've gotten so used to that and accomodate a lot of it during our day that I don't see it as a quirk at all.

So if you could go back and tell your parents/guardians what not to do what types of things would it be?


Actually, I think it's probably best to treat your daughter as though she had a disability. One thing I wish my parents did was acknowledge how severe mine were when it didn't benefit them (mine aren't severe, by the way).

Your daughter has regressions. That's pretty disabling!


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libertyseas
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07 Oct 2012, 3:59 pm

emimeni wrote:
libertyseas wrote:
I like the discussion that is going on in this thread. If you think back to your childhoods what would you like to have your parents do differently? For me I hated the way my parents disciplined and neglected me, so I am very appreciative, positive and present as a parent. However I don't know if I am making mistakes with my own kid. I don't view her as disabled in the least. She achieves her milestones, her only I guess "quirk" is that she really needs to keep moving. I've gotten so used to that and accomodate a lot of it during our day that I don't see it as a quirk at all.

So if you could go back and tell your parents/guardians what not to do what types of things would it be?


Actually, I think it's probably best to treat your daughter as though she had a disability. One thing I wish my parents did was acknowledge how severe mine were when it didn't benefit them (mine aren't severe, by the way).

Your daughter has regressions. That's pretty disabling!


I suppose I never thought of her as disabled cause she can do pretty much anything she sets her mind to. She hasn't had a regression this newest school year, but it may happen again. I guess my hesitation there is I don't want her to put limits on herself or think she can't achieve stuff when she likely can. Although the other side is I don't want her to to be absolutely shattered when she can't do something that is easier for others and someone is jumping on my bed so I must stop typing and go to the park for a whiole



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07 Oct 2012, 11:54 pm

libertyseas wrote:
I suppose I never thought of her as disabled cause she can do pretty much anything she sets her mind to. She hasn't had a regression this newest school year, but it may happen again. I guess my hesitation there is I don't want her to put limits on herself or think she can't achieve stuff when she likely can. Although the other side is I don't want her to to be absolutely shattered when she can't do something that is easier for others and someone is jumping on my bed so I must stop typing and go to the park for a whiole
I think what you're trying to deal with is probably the "baggage" that our culture drags along with the concept of disability--that idea that you are intrinsically limited, that you can't follow your dreams, that you cannot be capable, competent, talented; that your disability completely defines everything about you... But that is not what disability is. Disability is simply that you have one or more deficits that society is not set up to accommodate. It says nothing about your value, nor anything about your strengths; nor does it limit you to the stereotype of "disabled person". It doesn't mean you should be pitied; nor that you have to be ashamed. Many people seem to feel as though they have to reject the concept of "disability" entirely in order to reject all those false stereotypes about it, but at its most basic, disability is a neutral fact and nothing more. You can see it as an annoyance in your life, or a part of your identity and a matter of pride, or something that merely makes your life different. People are different and therefore their experience of disability will be different. But--it is totally possible to drop all the misconceptions and stereotypes and generally stupid things that people think of when they think "disabled", without having to reject "disabled" as well. We need a word for what happens when the world isn't quite set up the way we need it to be, when we have to work harder, get help, use technology, or do things differently; "disabled" works as well as any.


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btbnnyr
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08 Oct 2012, 12:00 am

How do we know that the autistic kids who regressed were autistic to begin with? Were there some studies on this? Like did they show clearly autistic behaviors that the parents didn't recognize before the regression according to home videos? It certainly makes sense that they were born autistic and showed clearly autistic behaviors at a later age, but the shift is often noted to be abrupt from an interactive social child to an aloof uncommunicative child. I dunno if that's the parents fooling themselves, or if there is something to it. Kids with regressive autism have been reported to have moar severe traits. Did anyone here have this regression in early childhood?



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08 Oct 2012, 12:18 am

btbnnyr wrote:
How do we know that the autistic kids who regressed were autistic to begin with? Were there some studies on this? Like did they show clearly autistic behaviors that the parents didn't recognize before the regression according to home videos? It certainly makes sense that they were born autistic and showed clearly autistic behaviors at a later age, but the shift is often noted to be abrupt from an interactive social child to an aloof uncommunicative child. I dunno if that's the parents fooling themselves, or if there is something to it. Kids with regressive autism have been reported to have moar severe traits. Did anyone here have this regression in early childhood?
There have been some studies where parents of children with autism turned in home videos of their children before the diagnosis, in infancy and the early toddler years; and there were significant differences long before the autism was obvious or any kind of regression happened.

"Regressive autism" specifically, with dramatic loss of previously mastered skills rather than just stress-based regression, is more correctly called Heller syndrome or childhood disintegrative disorder; and yes, it is usually severe. It's also quite rare. I don't know that I have ever met anyone on WP with Heller syndrome. Most of the time, when people with autism lose skills, it's more along the lines of dropping them due to stress, or just losing access to the most tenuously held ones--but they were always autistic, and their tendency toward regression is just one of their autistic traits. The "normal development, then one huge regression leading to severe autism" thing is Heller syndrome. Kanner/Asperger autistics tend to be more along the lines of "I was always weird; but then I got so stressed out when I started first grade that I couldn't talk most of the time, so they finally got me evaluated for autism"...


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9of47
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08 Oct 2012, 3:53 am

The first regression I had from memory was when I was 8 and we moved from overseas. I was learning a second language at my previous school and when I came to Australia, my ability to speak that language almost disappeared overnight. At the time, my ability to speak and read in the language was as good as any native speaker of that language at that age. I probably lost a few other skills and abilities as well at that time.

At the moment I feel like I have just come out of a regression. So now I am trying to do my best to get back to where I was. For most of this year I felt as if I have been "blocked" somehow. Like I know that I could do something but that I can't. Slower, less able to absorb information, less motivated. The only bad part is that it's now near the end of a semester of classes and I have to catch up and d my best to not fail my subjects. I've only been diagnosed for just under 2 years now and aware of my disorder for only a few months more so I haven't realized that I could have a regression as an adult. I mean, I've experienced so much stress in the last 2-3 years that I should have expected some fall-out from it, but I thought my depression, bout of insomnia and weight gain would have been enough.


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9of47
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08 Oct 2012, 3:56 am

Double Post.


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Last edited by 9of47 on 08 Oct 2012, 9:59 am, edited 1 time in total.

onks
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08 Oct 2012, 4:27 am

Callista wrote:
btbnnyr wrote:
How do we know that the autistic kids who regressed were autistic to begin with? Were there some studies on this? Like did they show clearly autistic behaviors that the parents didn't recognize before the regression according to home videos? It certainly makes sense that they were born autistic and showed clearly autistic behaviors at a later age, but the shift is often noted to be abrupt from an interactive social child to an aloof uncommunicative child. I dunno if that's the parents fooling themselves, or if there is something to it. Kids with regressive autism have been reported to have moar severe traits. Did anyone here have this regression in early childhood?
There have been some studies where parents of children with autism turned in home videos of their children before the diagnosis, in infancy and the early toddler years; and there were significant differences long before the autism was obvious or any kind of regression happened.

"Regressive autism" specifically, with dramatic loss of previously mastered skills rather than just stress-based regression, is more correctly called Heller syndrome or childhood disintegrative disorder; and yes, it is usually severe. It's also quite rare. I don't know that I have ever met anyone on WP with Heller syndrome. Most of the time, when people with autism lose skills, it's more along the lines of dropping them due to stress, or just losing access to the most tenuously held ones--but they were always autistic, and their tendency toward regression is just one of their autistic traits. The "normal development, then one huge regression leading to severe autism" thing is Heller syndrome. Kanner/Asperger autistics tend to be more along the lines of "I was always weird; but then I got so stressed out when I started first grade that I couldn't talk most of the time, so they finally got me evaluated for autism"...


That's also what I think that you would find this overwhelming when you come from a "ideal" world from home into something like school.
You should get a diagnosis then and trying to help your kids to find their way.
But the aspie way, not the NT way. Making clear that this is something that is accepted and allowed, and something that you can adapt to.
Describing own experience is probably one of the possibilities.

libertyseas wrote:

I suppose I never thought of her as disabled cause she can do pretty much anything she sets her mind to. She hasn't had a regression this newest school year, but it may happen again. I guess my hesitation there is I don't want her to put limits on herself or think she can't achieve stuff when she likely can. Although the other side is I don't want her to to be absolutely shattered when she can't do something that is easier for others and someone is jumping on my bed so I must stop typing and go to the park for a whiole


Parents should be always supportive and not entirely play along the NT way. Or maybe rather mixing the useful aspects of both worlds.
Mixing the aspects that your daughter finds useful basically.
And that what you are doing is I think just this.

Trying to make herself clear about her situation and her feelings with a focus of making herself feel comfort.
Letting her figure out things herself with a little help on the facts and experience and small pushes into the right direction I guess is exactly the right way to go.