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bjtao
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25 Aug 2010, 11:31 am

I am curious to hear from everyone on this topic.

It seems a lot of people (not all) assume that ASD people are fine, and their issue are related to 'normal' people trying to force 'normal' upon them, or normal people judging them and if it weren't for the 'normal' expectations, the ASD child would be happy.

There seems to be a lot of slack given to parents who make statements such as wishing their child was normal, happy, or more functional.

In my own personal case, my son is very unhappy due to his ASD symptoms. I have accepted him as he is but I want to 'fix' things that make life difficult for him. This has nothing to do with normal expectations, normal functioning, or wanting him to be accepted by others - it is all about his comfort, reducing pain, and him being able to do what he wants to do.

My son is not happy. My son cannot do things that other kids do, which would be fine except that he wants to do them. Not just because other children do them - because he wants to. He cannot button buttons. He cannot wear shoes without great discomfort and pain. He cannot wear clothes he likes the look of. He cannot participate in water activities. He cannot ride a bike. He may never drive a car. He cannot join spor he is interested in. He cannot write a summary of a book. He cannot express himself well verbally so he (used to) have violent rages. He cannot follow simple directions. The list goes on of things he wants to do but can't.

All of these things bother him and make him unhappy. He wants to do these things but is unable. It has nothing to do with what other people think. He WANTS to do these things (or not do these things e.g. rages) and he can't.

There are many things he doesn't want to do that he can't anyway due (in-part) to symptoms of his ASD - he doesn't want to hang out with friends after school or on weekends. He doesn't want to look people in the eye. He doesn't want to be an excellent writer. He doesn't want to be Mr. Popular. He doesn't want to be in football. He doesn't want to go to other people's houses. He doesn't want to play outside. These things don't bother him because he doesn't want or need them.

Is this just my son or are there other children that have the same feelings? A lot of people seem to not believe that some of these kids actually are unhappy due to their disability or even believe it is a disability - we should all just accept them how they are. It is not really just a social disability for all children, for some, sure. But not for all.

There just seems to be this blanket assumption that having ASD is fine and these kids would be happy if it weren't for NT's judgement of them, but I don't think that is true.

Thoughts or comments?



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25 Aug 2010, 1:33 pm

From age 7 (when my son was diagnosed) to age 13, I would easilly say that what made my son unhappy was all external. Writing is painful for him, but he would happilly buy voice software (we have not done so) and dictate everything were that an option.

But, a few days ago, I heard something from him that does go deeper. His co-morbid disability, he is slowly figuring out, is also interferring with his dream, which is to become an inventer. He has given up on making prototypes because his hands can't do it. I suggested all sorts of work arounds, like we always have, but he just stared at the table, and basically told me it isn't the same.

He knows that his AS brain is WHY he can invent in the first place, but we are now running head long into the question of if he has the practical abilities to turn the ideas inside his head into realities.

I do see a new resignation in him that didn't use to be there.

I'm not sure how to help him get past that, and I feel I need to. I don't want him to lose his dreams at age 13. Shoot, I want to cry just thinking about it.


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25 Aug 2010, 1:48 pm

This is a really complicated issue--it can be very hard to separate what child wants versus what their parents want. Even more confusing--what people want will often change as they grow up. For instance--guys who wanted to be normal change their minds after their growth spurt--hoping that they will be 6' tall instead of the average 5' 10." Even tougher is that the mind needs challenge to grow--but it is a very fine line between exercising the brain to the fullest and the resignation of defeat. Some folks actually learn to walk again after strokes, while others, less impaired from a clinical standpoint, remain stuck in wheelchairs.



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25 Aug 2010, 1:49 pm

The confusion is mostly due to poorly defined positions, and people assuming that anybody who argues differently argues to the extreme.

For example, the people who want to help their children deal with problems are often viewed as overbearing parents who are trying to force normality on to their children. It is assumed that these parents force their desires by threats, coercion, and violence. And that the parent's are more interested in their own expectations and outward appearances than actually helping their child. In reality, that isn't the situation. There may be a few parents who are indeed overbearing, and more interested in making their child normal then helping, but those tend to be in the minority. Unfortunately, due to the way people overact to opposing opinions, people tend to assume the worst and demonize others.

The same can be viewed the other way. Parents who just want to accept their child and not force him to be normal are often viewed as being 'too soft' and giving up on their children. It is assumed that these parents don't care about their child's well being, and are just trying to avoid responsibility. In reality, this isn't the case, but again due to people overacting to different opinions, this is the image that is portrayed.

And so you wind up with two groups of parents. Group A thinks that group B is overbearing, self serving, and forcing their child beyond what they can handle. And so group A feels as though they are actually trying to work with and help their children, while group B is evil and selfish. Group B thinks that group A is lazy, uncaring, and has given up on trying to help their children. And so group B feels as though they are actually trying to work with and help their children, while group A is evil and selfish.

And so we wind up with two people, who are both just trying to do the best they can, and actually have very similar goals, wind up angry and opposed to each other, rather then working together to figure out the right balance. The same problem can be observed in politics. If you are familiar with the american political scene you know that the two groups tend to demonize, and over exaggerate their 'opponents' views to the point of absurdity, and you wind up cutting off all effective interaction. Both of these cases are the result of a lack of time or effort spent understanding and appreciating other people's perspective. This is more commonly referred to as lacking a 'theory of mind' (despite what the psychologist say, its not a trait solely of autistic people, its a trait all people have).

So what this means is that if you come on the forum and say things like 'you want to help your child deal with his problems', then you will likely get responses from people who assume the worst, jump to conclusions, and demonize you as overbearing. Likewise, if you go on a message board populated mainly by normal people, and post things about accepting your child's autism, then you will likely be accused of giving up and abandoning your child. In reality, you are doing neither, you are just trying to find a rational and helpful approach, and you wind up being demonized by people who are too blinded by their own assumptions.

All that to say: Most people, if they manage to move past their emotionally based positions, will agree that helping the child to overcome the difficulties that are causing him problems is a good thing. As long as it is done with the intent and purpose of helping the child to live a better quality life, and not done for the purpose of imposing normality simply because you don't want to bear with the shame of having a child who is different.

However, part of the problem is that even with good intentions of helping, progress may not come. I may want to be well coordinated, but to this day my writing is still mostly illegible. And part of helping your child is accepting that difficulties do exist, and that well intended therapies and kind people cannot overcome some things which are hard wired into the brain. When this happens, you have to accept that helping your child doesn't necessarily mean changing what they can do, but teaching them how to cope with their limitations. And at the same time, helping your child means that you have to change your expectations, and those of others, about what they can do. When a child does the best that they can do, and all reasonable attempts at progress are unsuccessful, then accepting what is, and making the most of it, is more helpful to your child then trying more and more extreme measures to force progress that cannot be forced.


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25 Aug 2010, 2:05 pm

Bjtao, your child's limitations seem to be greater than those of most Aspies, which may be part of the problem. Most aspies can play outside, drive cars, follow simple directions, ride bikes, and write book summaries. Most aspies can participate in sports, as well, though we may not be great athletes. For most Aspies, the way we're treated by others IS our biggest issue. Perhaps you should consider getting a second opinion about his diagnosis? Especially if he is having trouble verbally communicating...that really seems a bit beyond Asperger's in my humble and completely non-professional opinion.



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25 Aug 2010, 2:07 pm

Building prototypes is something that I'm really gifted at. It is really tough, even for normal people. Seriously--there are lots of bright students in top colleges that can't build stuff.

It takes an awful lot of practice and study. I've built hundreds of models--rockets, airplanes, cars. I've also taken apart lots of stuff, to see how stuff is put together.

You really need to start simple--really simple. Plastic model kits might be a good start--I don't know his skill level. Even simpler might be Legos. As a kid I wish I had more scrap wood blocks to make stuff out of--but that was only after I got a lot of experience making stuff out of model kits.



bjtao
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25 Aug 2010, 3:21 pm

Rynessa wrote:
Bjtao, your child's limitations seem to be greater than those of most Aspies, which may be part of the problem. Most aspies can play outside, drive cars, follow simple directions, ride bikes, and write book summaries. Most aspies can participate in sports, as well, though we may not be great athletes. For most Aspies, the way we're treated by others IS our biggest issue. Perhaps you should consider getting a second opinion about his diagnosis? Especially if he is having trouble verbally communicating...that really seems a bit beyond Asperger's in my humble and completely non-professional opinion.


Yes, my child has PDD-NOS. I used the term ASD (Autism Spectrum Disorders) to cover all. But that might be one confusion right there sometimes, thinking that everyone's functioning is equal to their own or their own childs and not seeing that there is a spectrum.



bjtao
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25 Aug 2010, 3:30 pm

Great discussion and points. This issue really does bother me somewhat and I just couldn't see the other side. Now I see better.



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25 Aug 2010, 4:13 pm

It sounds like your son does have the DESIRE to accomplish things. He may not be able to do everything on the list that he wants, but I think with some help, he may eventually be able to do some of the things. You did just get the diagnosis, and I think that with some therapy, especially for some of his sensory issues, then he might be able to overcome some of his difficulties. I would definitely make sure the OT that you get uses sensory integration techniques. Over time, he may be able to be desensitized to some of the things that bother him so much.

I too feel that I have to walk a fine line between just allowing my son to not do things or try things and pushing him a little so that he can learn new things. I think with your support and guidance, you can help your son to understand more about what his diagnosis means for him, and to help him along the path. I certainly do not fault you for wanting to "fix" things for your son. If you know that he is unhappy, then by all means, see what you can do to help him. You sound like a parent that truly desires the best for your son. Unlike some parents that just can't give up the dream in their mind of what their child should have been.



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25 Aug 2010, 10:53 pm

Thanks angelbear. Yes, we are only a few weeks in. As my emotions about everything wind down, I am seeing clearer - and so is my son. He now has something from me, his teachers, other family members, and care givers that he has never had before - he has understanding (or he is getting it as I go through the endess meetings and discussions). That alone has helped him tremendously. To no longer feel like he is a 'problem' at school. I am learning a lot and can only see it getting better from here on out (with a lot of work). I can't wait to start the OT because that is the most debilitating part for him. (Today) I am feeling hopeful. IDK how I will feel tomorrow or how things will go tomorrow (really good, really bad or inbetween). Perhaps I also feel this way because I am 'dealing with' a 10 year old w/ PDD that has never had any treatment. I am sure it would be different had he had intervention all this time. This has been a horrible and draining past 2 years for both of us. I guess I need to see that my situation and perspective both because of the late diagnosis (and treatment) and severity - but I wish others would see that too. I think there is an assumption on the boards that your child has Aspergers unless you otherwise note it.

I also read a lot of things that say the diagnosis of PDD-NOS is the 'highest' functioning PDD (ASD) diagnosis, but I don't think that is accurate. Not sure. I think there is a lot of misinformation out there - the one thing that I do know is that it really is a spectrum and every case, including severity in different areas, is different for every person and child.



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25 Aug 2010, 11:30 pm

There are certain consistencies among all the ASD's, and that is really the focus here. The exact split - Aspergers, PDD-NOS, Autism - doesn't seem to be that important. The issues we deal with as parents seem to completely cross those lines. I use AS as a kind of "something on the spectrum" term.

I'm not sure even the experts are all that sure about the label differences, and maybe it doesn't really matter. It pretty much all ends up with the same, "what do we do now?" answer.


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25 Aug 2010, 11:40 pm

Quote:
There are certain consistencies among all the ASD's, and that is really the focus here. The exact split - Aspergers, PDD-NOS, Autism - doesn't seem to be that important. The issues we deal with as parents seem to completely cross those lines. I use AS as a kind of "something on the spectrum" term.

To those that don't know they are consolidating all the labels into one general autism spectrum disorder in the next DSM (that seems so delayed I wonder if it'll ever make an appearance.)

It seems most of the people on this forum are happy or okay with being autistic, so I recognize that it is certainly not a death-sentence or something that needs to be eradicated, but I would prefer not to have it. There's so much stuff I seem to not be able to do yet, and I wonder if I ever will be able to.



bjtao
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26 Aug 2010, 7:52 am

buryuntime wrote:
Quote:
There are certain consistencies among all the ASD's, and that is really the focus here. The exact split - Aspergers, PDD-NOS, Autism - doesn't seem to be that important. The issues we deal with as parents seem to completely cross those lines. I use AS as a kind of "something on the spectrum" term.

To those that don't know they are consolidating all the labels into one general autism spectrum disorder in the next DSM (that seems so delayed I wonder if it'll ever make an appearance.)

It seems most of the people on this forum are happy or okay with being autistic, so I recognize that it is certainly not a death-sentence or something that needs to be eradicated, but I would prefer not to have it. There's so much stuff I seem to not be able to do yet, and I wonder if I ever will be able to.


I don't think there is anything wrong with saying you would prefer that yourself or your child didn't have it. I wish my child didn't have it so he didn't have to struggle with things that are easy for other children and people, so he could enjoy life. I am aware that if he didn't have ASD he could have something else (like my younger son), but....IDK. I just don't think there is anything wrong with wishing.



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26 Aug 2010, 9:02 am

bjtao wrote:
I also read a lot of things that say the diagnosis of PDD-NOS is the 'highest' functioning PDD (ASD) diagnosis, but I don't think that is accurate. Not sure. I think there is a lot of misinformation out there - the one thing that I do know is that it really is a spectrum and every case, including severity in different areas, is different for every person and child.


i definitely see that implication that pdd-nos and as are higher functioning, its apparent in the misnomer "a mild type of autism" that you see in many places where these two specific forms of autism are discussed. i think its technically true in the fact that they dont have as many diagnostic criteria to fulfill, but as i view things, just as autism is a spectrum, so are the individual diagnoses along it. its not that as or pdd-nos are single points along the autism spectrum, but rather they are overlapping ranges on the spectrum. so you can have someone with classic autism who is farther along the spectrum (higher functioning) than someone who is pdd-nos. it all depends on how severe functioning is impaired for that person, which can also vary depending on the situation, so perhaps those two people swap places on the spectrum for some other situation.

as for the happiness, i think some of that can be traced back to the fact that we are each individuals with unique personalities. some people just simply are happier people. i wish we could all just be happy to be alive, but that isnt the case. but you can learn to be happier, you can wake up each day and make a decision on how you are going to react to the world and you CAN work on changing those reactions into more positive ones. it may be harder for someone, asd or not, who tends to hyper focus on negative events or feelings, but its something we call all work towards.

i believe that for you and your son, things will start to be different, better. i know a lot of people view diagnosis as a label, but i view it as a tool, or rather, a toolbox. nay, its a giant wheeled tool chest like mechanics use! and you are the chief mechanic who, with the help of the other mechanics (ST, OT, PT, etc), is going to use that tool chest to help your son, to pinpoint where problems lie and figure out solutions.

your son may never do some of those things that he really wants to do, just like my son may not. as parents, our goals should be to help them find ways to adapt those things so they CAN do them, or find other things they CAN do that they will enjoy just as much.

it sounds corny but, until now your journey with your son has been directionless, youve been bushwacking, wandering around lost, unsure where you were or how to get where you are going. now you are on a beaten path and you are starting to see some signposts. it may not be a 6 lane paved freeway, but the most interesting and rewarding journeys are rarely traveled solely on that type of road. you and your son will both learn and experience so much more on these back roads. good thing you are a mechanic =P


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26 Aug 2010, 9:58 am

My son is diagnosed as PDD/NOS/ possible Asperger's. He honestly does have many Asperger characteristics, but not all. As far as whether he is more high functioning or not, I am just not sure. So, the conclusion I have come to is just to call it ASD, and leave it at that. I still read books about Asperger's because overall, those seem the most helpful for us.

I can only speak for myself, but this is still a difficult journey for me. Our son has been diagnosed for 2.5 yrs, but we knew something was going on for about 4 yrs. My son is only 5, so there were times when I consciously made the decision to stop focusing on the diagnosis, and just enjoy my son. Because he is my only one, and I just didn't want to look back on his babyhood/toddlerhood and just remember all of this stuff. I want to remember the joys of him as a unique little guy. I have to say that autism was very scary for me in the beginning. But the more and more I educated myself, I am not as afraid. I don't view it as a death sentence anymore. But, there are still times and days when I feel sad, that my son has challenges. I am not sad for myself, I am just sad for him that life may be difficult. Right now, though, he seems pretty happy, so I just try to go with it.

I think the thing that bothers some here at WP is when parents try to do everything they can, including scary treatments, and questionable therapies to make their child "normal" I don't think that is what you are doing. There is absolutely nothing wrong in trying to help your child be more functional and wishing that he didn't have these challenges.



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26 Aug 2010, 5:08 pm

Wishing he didn't have so many stumbling blocks is a-okay I think with all. But alot of people here read literally, so when someone drops the phrase "I wish he was normal" everyone hears it as (not assumes.. actually hears it as) 'I want to stick needles in him, pump him full of pills, have a piece of his brain excised, and stick him in an oxygen chamber once a month'. So everyone starts piling on the poster in an effort to say "we are fine" - because there ARE alot of people out there (go to almost any other forum out there populated by parents with ASD kids) where moms are pushing their kids to become extroverts.. and wondering if they should do all that medical stuff mentioned above. It's a trigger phrase.

That being said, Bj, you seem to be pretty well balanced in your outlook. I certainly wish I didn't have some of my disabilities (some Aspie ones and some due to physical birth defects). Most of the Aspie ones I think I can learn to live with and adjust to, now that I'm aware of the condition - I didn't have as severe a time as your son is having with it, though: My parents were not aware of ASD and never brought up my 'misbehaviour' issues to any professionals, so I was raised 'normal' for all intents and purposes.

I think a great deal of the outcry when a parent starts posting that they want their kid to be normal is when that desire wanders in to the 'socializing like normal kids' realm - mainly because those of us (especially those of us who grew up undiagnosed) have heard repeatedly from parents and other authority figures in our lives:

They worry about us not being adequately social - they demand that we find more friends, or do more activities, get out of the house more. Even at the age of 34 they continue to do this for most of us, even those of us living comfortable lives.

And it becomes a part of our lives we're constantly defending aginst - this pressure to conform to an NT definition of 'a good life' - with no resolution. Extremely frustrating and stressful.

So yes - wanting to fix the things your son also wants to fix is the right position to take.

It's when people go off screaming that they need ways to fix the things that don't bother [kid] but do bother [mom] because the bothersome bits aren't what [mom] sees in 'normal kids' lives - and [kid] doesn't at all see it as sufferance...

I think that's the 'line that must not be crossed' around here - and sometimes (often) the controversial posts leave that line pretty smudged.
---
Of course, making sure he doesn't go around smacking other kids over the head, or darting out into traffic - those are things to want to chage. But these are survival skills; Salma's Sewing Circle for Tots isn't neccessarily a survival plan.



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