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#61 of 86 Old 05-08-2007, 11:55 PM
 
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Originally Posted by kchoffmann View Post
Yup and yup.

Is it just me, or do other people here get kinda bugged when people who don't have autism in their lives have really strong opinions about these sorts of things?
Yes
I have to say, I had to walk away from this one when I read it yesterday.
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#62 of 86 Old 05-08-2007, 11:58 PM
 
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Originally Posted by peekyboo View Post
This could get me in trouble...but...lol...

I always find it interesting when people DEMAND you listen to their side of the argument when they won't even bend a little to listen to your side.

I also find it interesting when people stumble upon this particular board and bust into conversations with their opinions/experiences, and they end up inadvertantly stepping on toes here. It's happened to me a couple times and I've seen it many MANY times.

NOT that we don't enjoy visitors, but please, walk a mile in our shoes before telling us our opinions/reactions/feelings are wrong. Because if you lived our lives day in and day out, dealt with the rollercoaster of emotions we do, I bet your opinion of things like this would change.
:


OP- I was just curious about your interest, not saying you shouldn't be asking. Thanks for clearing it up. I just like to know where people are coming from, as sometimes the strong opinions on things like this get out of hand.

I did everything 'right' but still have a ds with autism. It's frustrating for me b/c I'm already questioning myself on what i could have done differently and all the what ifs. I don't like to hear others saying that I did something wrong (not you saying that, but it does come out like that sometimes as the thread progresses).

There is enough guilt as a parent of a typical kid, more guilt associated as a mom of a sn need kid, i don't want any more.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#63 of 86 Old 05-09-2007, 12:04 AM
 
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Yes, people who don't have a child on the spectrum or aren't on the spectrum themselves but want to discuss conspiracy theories wrt vaccines need to take it to the vax forum. Please. Thanks.
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#64 of 86 Old 05-09-2007, 12:05 AM
 
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Oh whew! I thought I was the only one getting rubbed the wrong way. My boys aren't vaxed and I was still getting annoyed by the "if you don't vax your kids will turn out perfect like mine" attitude.
Like others have said, bringing this to the SN's forum is not the place (and again, this is not to the OP).
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#65 of 86 Old 05-09-2007, 12:15 AM
 
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There is very little that I have found on the MTHFR mutation and Autism, other than it might be related. I have two mutations (A and C) that were discovered after loosing two pregnancies. I have three little boys. One with Autism, one without and one who was just born. For what its worth, we had my son with Autism tested and he has no mutations. Either way, I feel better knowing that I treated myself with extra Folic Acid during my pregnancy.
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#66 of 86 Old 05-09-2007, 12:39 AM
 
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Originally Posted by peekyboo View Post
This could get me in trouble...but...lol...

I always find it interesting when people DEMAND you listen to their side of the argument when they won't even bend a little to listen to your side.

I also find it interesting when people stumble upon this particular board and bust into conversations with their opinions/experiences, and they end up inadvertantly stepping on toes here. It's happened to me a couple times and I've seen it many MANY times.

NOT that we don't enjoy visitors, but please, walk a mile in our shoes before telling us our opinions/reactions/feelings are wrong. Because if you lived our lives day in and day out, dealt with the rollercoaster of emotions we do, I bet your opinion of things like this would change.
Thanks Peekyboo - exactly how I feel.

And a couple more of my favorite things - people stumbling on the board, posting lots of opinions and links and then never returning to see the responses, and my #1 favorite - when someone posts asking about the early signs of autism then after a bunch of helpful responses they say, "oh my child is fine - I'm just really terrified of the thought of autism so want to be on the lookout for any signs." :
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#67 of 86 Old 05-09-2007, 12:48 AM
 
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This is a very interesting thread forme...

My oldest son, who is 9, is high functioning AS, diagnosed PDD-NOS. An Aspie

He is only affected in the social aspect and even then it is difficult to tell because he does make friends on occassion, he does make eye contact etc. ( the schol system tried to label him ODD, hes a runner and a fighter )

I have to share my experience because I wonder too...the what if's?

My oldest dd ( who has issues...also, but has not gotten the AS label) is fully vax'ed. SHe was born preterm, oxygen deprived ( it was an overseas birth and they practice medicine veeery different over there where she was born). curently has tourete and has label ADHD ( which i disagree with).

My 2nd ( the Aspie) was OVERLY immunized ( long dumb health dept. story...), however, he has been a HANDFULL since he as in utero and he didn't have immu's then, kwim? his birth was quick and rough, he was 10 lbs, a rough inductioin...blah, blah blah...he had issues nursing at first, trouble "thriving", and he was jaundiced.

Child #3 is hyper, pure and simple, shows some signs of Aspie type qualities...but has yet to recieve a dx.

Fourth child, same thing. Both of these children had normal births, but were inductions, and neither one has had full immu's...#3 had one year or so and #4 had a few done at 4 months...that was it.

baby #5 was induction, long ugly birth, was born ok, but has never recieved any immu's ever. Was bf'ed co-alpet, and she so far shows no signs of anything...

baby #6 was birthcenter natural birthed, bf'ed, co slept, no immu's...you name it...and he shows no signs thus far.

I say the younger two show no signs, because they are already clearly different from the way my aspie was at that age (1-3 yrs) and even the older few who have had *other stuff* happen to them...


I dunno. I agree with the possiblity that it IS genetic and that environmental factors increase its potential, vax included.

However, I will say this, I truly believe my dh is high functioning Aspie...AND I have alot of the same qualities my child has as well.

Dh's grandfather was known as a *con artist* all his life...I was told he was a super, super nice guy...but he woudl take the last buck you had without thinking baout it. That is exactly how my son is. it is not intentioinal, it is jsut his way of controllling...

So in my mind, it has to practically be somewhat genetic.

However I do think there are things we can do as parents to help our kids not hit the spectrum at times but not always.

I think it would be interesting if someone would post a thread specificalll asking questions about each persons experience, how they have raised their child that is on the AS, and see what factors match up. THAT would be something to see IMHO.

(ex: what kind of birth did you have? was it traumatic? do you vax? if so delayed, not at all, or selective? is there autism anywhere else in your family that you know of, or *odd* type relatives that you can recall?)

etc, etc...

Also, anyone heard about the later in pg U/S theory???
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#68 of 86 Old 05-09-2007, 11:26 AM
 
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Originally Posted by shelbean91 View Post
I did everything 'right' but still have a ds with autism. It's frustrating for me b/c I'm already questioning myself on what i could have done differently and all the what ifs. I don't like to hear others saying that I did something wrong (not you saying that, but it does come out like that sometimes as the thread progresses).

There is enough guilt as a parent of a typical kid, more guilt associated as a mom of a sn need kid, i don't want any more.
Yeah. That's a big part of where I get bugged too. It pisses me off, too, because it's not clear where this strong need to be right about it comes from (the rebutting everything everything else that's said here). And then the nerve to spout that here, where we really are suffering with this kind of guilt and all the unanswerable questions.

Like Finch said, keep it in the vax forums please.
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#69 of 86 Old 05-09-2007, 11:36 AM
 
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if this offends anyone im sorry, but the question was what do you think causes autism and posted what i believed. i am an aspie myself. where i got that from, i have no idea. my step cousins son is also autistic. we are not blood related, but that doesnt mean that it hasnt affected me.
i DO think there is a huge link to vaccines, rhogham, flu shots, amalgrams. i also think there are other things, like genetics, and then other times there are no answers. like i said, i am an aspie, and i dont have answers as to why i am this way. it could be vaccines, but it may not be.
thank you to the person that posted the amish article. i have been doing a lot of research, and i find that very interesting. nothing like that was ever mentioned to me. yes, i do get very passionate about this topic, b/c my son has gerd and food allergies, and sensory issues, and started to regress developmentally after each round of vaccines. he caught up again, and some say he is even advanced for his age, but i am not taking anymore risks with him. from what i have researched, children with issues like his are more at risk for having adverse reactions to vaccines, etc.
so just dont assume that none of this has affected my life, because it has. i get very passionate about things and i guess i need to work on that and calm down a little.

DS 5-11-06
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#70 of 86 Old 05-09-2007, 11:42 AM
 
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i am an aspie myself. i get very passionate about things and i guess i need to work on that and calm down a little.
Ah. That explains some things. : Well, then I need to apologize back.
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#71 of 86 Old 05-09-2007, 11:51 AM
 
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Yes, I apologize for ASSuming you had no link to autism.

I really do hate the vax discussions here, though, to be honest. I really wish that stuff would stay in the vax forum. Not everyone here, myself included, agrees with the vaccine/mercury theory. It's a very volatile topic, and IMO best kept in the vax forum.

It would be like me going into the homebirth forum and citing all sorts of statistics about homebirths gone bad, etc.. Just not the place for it, kwim?
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#72 of 86 Old 05-09-2007, 11:57 AM
 
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Visitor here. I liked reading everyone's thoughts, and experiences, especially Individuation and Finch.

I've taught for about four years now, mostly young children, and for half a year taught in a preschool where four of my students were diagnosed with autism. Last year, I taught kindergarten and worked with more kids on the spectrum. This year, I have one little girl who is not diagnosed, but probably will be as soon as she gets out of this private school.

My sister is a social worker in Pittsburgh and does social interaction training with kids on the spectrum. I think her clients are aged 3-13.

Comparing notes, we see that none of these kids is the same. Ok, sure- there are little things that are similar, such as some behaviors. But, we've discovered that the more we see, and the more we work with these kids, we realize we really don't know anything at all. I do know that for whatever reason, I keep getting drawn into working with children who have autism, and I'm always interested in learning more.

My belief, having worked with and interacted with so many different styles and types of families- so SO many things are involved, you can't really pinpoint one exact thing. I love a saying that I heard once- "Genetics loads the gun, Environment pulls the trigger."

And I agree that much more effort and money should go into helping people with ASD as children or adults live well independantly.

Clara

Mama to a beautiful little girl, born July 18, 2007
Eager for a VBAC some time around April 10, 2010!
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#73 of 86 Old 05-09-2007, 01:51 PM
 
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I really do hate the vax discussions here, though, to be honest. I really wish that stuff would stay in the vax forum. Not everyone here, myself included, agrees with the vaccine/mercury theory. It's a very volatile topic, and IMO best kept in the vax forum.

It would be like me going into the homebirth forum and citing all sorts of statistics about homebirths gone bad, etc.. Just not the place for it, kwim?
I agree with this - or perhaps there's some way to talk about it where we as parents aren't the ones made culpable for our children's autism. How much energy do we spend already going over all the things that may have been responsible? How much do we already do feeling like maybe we're not doing enough or the right thing? I'm sure mercury poisoning sometimes does have a place on the spectrum (perhaps mimicing symptoms), but it's certainly not always the case. My child, as one example, was tested for metals and does not have a proliferation in his system. Yet here he is, on the spectrum.

Sometimes I feel like the vax nazis do the same thing to us as Kanner did with the "refrigerator mother" theory. I don't like the implications.
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#74 of 86 Old 05-09-2007, 02:12 PM - Thread Starter
 
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I want to thank everyone for answering my OP. While I read some interesting discussion on triggers and genetics (most, but not all of which, I had heard before), I think I learned a lot more about being sensitive and supportive.

kathy
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#75 of 86 Old 05-09-2007, 02:37 PM
 
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Originally Posted by kchoffmann View Post
I agree with this - or perhaps there's some way to talk about it where we as parents aren't the ones made culpable for our children's autism. How much energy do we spend already going over all the things that may have been responsible? How much do we already do feeling like maybe we're not doing enough or the right thing? I'm sure mercury poisoning sometimes does have a place on the spectrum (perhaps mimicing symptoms), but it's certainly not always the case. My child, as one example, was tested for metals and does not have a proliferation in his system. Yet here he is, on the spectrum.

Sometimes I feel like the vax nazis do the same thing to us as Kanner did with the "refrigerator mother" theory. I don't like the implications.
Yes, I do not appreciate being told that I am a "sheep" who screwed up my kid : It's A. not true and B. very insensitive.
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#76 of 86 Old 05-09-2007, 03:36 PM
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I'm late on the thread but wth



Quote:
(ex: what kind of birth did you have? was it traumatic? do you vax? if so delayed, not at all, or selective? is there autism anywhere else in your family that you know of, or *odd* type relatives that you can recall?)
and the op's question...


I've come to believe that it is a mix of genetics and enviornment (sp?). I don't buy into that it is always easy to pick up kids (or adults) on the sprectrum. Some doctors I know, who are older from the days before the PDD diagnosis was coined, referred to some as "flk". Basically it meant there was something off about the kid but they couldn't pinpoint it. I say that because I am not sure if anyone else in my family would be on the sprectrum.

I did vax but I don't feel much guilt in it. Dh and I decided to do it even though I had more misgiving than him. We should have done it on a more selective basis but once again, I do not feel any guilt over it. We do not do any more vaxing of him now (chicken pox anyone?!?!).

Dh was 55 when ds was born. I've heard the stats go up for older parents. My pregnancy with him was harder than my first but not anything out of the ordinary. Ds had about as trumatic a full-term birth as you can have without ending up with a dead baby. Ds was born dead, no oxygen for I don't know how long. They turned the monitors away from because I was freaking out. They got him back but maybe the autism is the price he paid. If that's the case, I'm more than cool with it.

I think this knowing what caused autism is such a touchy subject not only for the guilt that can go along with it but also the thought of changing our children. My ds is wonderful. He's an awesome kid who wakes up happy and has so much energy it put the Energizer Bunny to shame. So when we talk about cause there is always the backend, effect. My ds has autism but I don't think the autism could be removed from him without shattering everything else that makes him so alive. I don't need him to be "normal" for my sake. He is who he is. I will be honest and say maybe because he is so high-functioning, I feel that way. But even when he was at his worse, my only concern was to help him find safer ways to be autistic- ei, please don't smash your head into the sidewalk...again... how about jumping up and down a couple hundred times? And of course, how about a Thomas the Train video?

Cause... effect...
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#77 of 86 Old 05-09-2007, 03:47 PM
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OFF-TOPIC

It's interesting to me that the vax stuff here rubs me the wrong way too. I didn't actually do most of the vaxing for DS. He was vaxed before we adopted him. So it really doesn't make me feel guilty or anything.

(Maybe it partially rubs me wrong because I actually think vacs are a overall a good thing. I believe in vacines preventing the horrors of polio, etc. But I know that's not the MDC view and I would never go over the vac board and start advocating my point of view.)

I think the bigger reason it rubs me the wrong way is what Finch pointed out. It just belongs on the vax board. I do understand how it overlaps in places like this thread though. Someone wants to know about causes. Not all the possibilities would be relevant on the vax board. This is the most logical place.

So, how do we handle this? Maybe we just need to remind "visitors" that certain kinds of posts can be hurtful and not productive? I don't suppose a sticky would help--"vistors" wouldn't be likely to read it. . . .

And there's a fine line too as I want people to feel welcome. I know I got challenged a few times when I first started posting here. I'd answer a question about potty-training or something with our experience and someone would post back, "Do you have a special needs child?" It was a little off-putting. Yes, of course I do, or I wouldn't be answering. . . . I've actually started putting some sort of explanation about DS' special needs in most of my posts because I feel like I have to establish my street cred or something.
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#78 of 86 Old 05-09-2007, 06:42 PM
 
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And there's a fine line too as I want people to feel welcome. I know I got challenged a few times when I first started posting here. I'd answer a question about potty-training or something with our experience and someone would post back, "Do you have a special needs child?" It was a little off-putting. Yes, of course I do, or I wouldn't be answering. . . . I've actually started putting some sort of explanation about DS' special needs in most of my posts because I feel like I have to establish my street cred or something.
As much as that makes me cringe a little, I can sort of understand it. We're protective of eachother here, and it has happened on more than one occasion that someone comes in here spouting off a bunch of sanctimonious or unhelpful crap, simply because they think they know it all, yet they don't have a SN child. The same thing happens in other specialty forums here, where the posters have a history of being belittled, attacked, chastised, etc., and that specialty forum was created to be a haven. You naturally want to protect the haven, kwim?

I will say this....on the 2 other boards I was on before I came here, the SN board was private, much like the abuse survivors board, and any old joe couldn't just wander in and start posting. I can see the benefits of both styles...here, moms who have an as yet undiagnosed sn child can come here and freely ask for help and opinions without having to go through a mod. At the same time, the posters still have to defend the fort, per se, from people who are here to do nothing but display their know-it-all-ness or spout their superior parenting tips to us sn parents who obviously screwed up because we have sn children (some people really do think that way....).

It's a hard line to walk sometimes. Like the whole vax thing, I guess.
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#79 of 86 Old 05-09-2007, 07:23 PM
 
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Some doctors I know, who are older from the days before the PDD diagnosis was coined, referred to some as "flk". Basically it meant there was something off about the kid but they couldn't pinpoint it
my mom's a ped (she's not older, but she's sure as hell old school), and her explanation of FLK to me was always more literal, as in, the child actually LOOKS different. ie, widely spaced eyes like my dd. sorta OT, but just interesting that other docs use it differently.

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street cred
I don't know why this made me so much! I picture bands of us SN moms snapping our fingers as we walk down the street, like West Side Story, except with granola and hemp!!

-back to lurking!

DD1 7/13/05 DD2 9/20/10
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#80 of 86 Old 05-09-2007, 07:31 PM
 
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My gut instinct is that in the increasingly toxic world we live in, there will increasingly be more triggers for autism than in the past. Many possible environmental factors interacting with a child's genetic factors. As it's a spectrum disorder it's so complicated. Research on 'the causes' however does not help the daily lives and the opportunities for these individuals and their families as they grow into adulthood. What happens when your child is 24? 47?

I would like to see more research on integrating persons with 'autistic' behavior into society on many different levels. For example studies on integrating people with autism into corporate jobs ("supported employment") for whatever work skills that individuals can be successful with. Another area where research is needed, is assisted educational support so individuals with autism can obtain real job training from community colleges, universities, vocational schools, etc. Government shouldn't have to take on all the expenses either for these studies. Let the rich corporations play the part of good citizens while employing more people. And more education of the public is needed as well.
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#81 of 86 Old 05-09-2007, 09:20 PM
 
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As much as that makes me cringe a little, I can sort of understand it. We're protective of eachother here, and it has happened on more than one occasion that someone comes in here spouting off a bunch of sanctimonious or unhelpful crap, simply because they think they know it all, yet they don't have a SN child. The same thing happens in other specialty forums here, where the posters have a history of being belittled, attacked, chastised, etc., and that specialty forum was created to be a haven. You naturally want to protect the haven, kwim?

I will say this....on the 2 other boards I was on before I came here, the SN board was private, much like the abuse survivors board, and any old joe couldn't just wander in and start posting. I can see the benefits of both styles...here, moms who have an as yet undiagnosed sn child can come here and freely ask for help and opinions without having to go through a mod. At the same time, the posters still have to defend the fort, per se, from people who are here to do nothing but display their know-it-all-ness or spout their superior parenting tips to us sn parents who obviously screwed up because we have sn children (some people really do think that way....).

It's a hard line to walk sometimes. Like the whole vax thing, I guess.
I also want to mention that this is one of the few boards where I've EVER seen autistic adults and parents of autistic children get along. As an adult on the spectrum, I sometimes get a little tense about things I read here, and there are threads I don't reply to because it would start a pointless fight.

However, the level of mutual respect here is really hard-won, and I don't like when someone who has a really strong agenda sort of shows up here to promote it, without realizing that there's been a lot of work done by everyone to make sure we all get along. Things like the Chelation Wars, or the Great 'Autism Speaks' Argument of March 2007, or the ABA vs Son-Rise vs Leave-them-alone-and-let-them-be Disputes have helped me, for one, realize that someone can disagree with me and not be evil.

Do I wish some of you guys would drop the "disorder" part of "ASD"? Do I worry about autistic children being labeled as somehow "lesser" or "broken." Sure. But as a disabled person, I understand the challenges and marginalization that we all face, and I know you guys deal with many of the same issues as parents. You guys are really not the enemy--and I'm sure you all fight various assumptions made about you and your parenting, every day, because you have kids on the spectrum. So, I stay out of arguments in which I'd really just be ranting, and I notice that some other posters who disagree with me do let me have my say without jumping down my throat either. So thanks.

We have a nice "safe place" here. I'd like to keep it that way.
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#82 of 86 Old 05-09-2007, 09:29 PM
 
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Very well stated Individuation. I have a question...what is an ASC? I've seen it used before but have somehow missed what the C stands for. With my son I never say Asperger's Disorder, I say Asperger's Syndrome. I dislike the term disorder but never knew what else to call it when speaking about my daughter.

We do have a very *safe* place here and I am so thankful that there are adult autistics here - I'm not looking for a cure for my kids so it is helpful for me to hear from those that are living the life my children may live one day.
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#83 of 86 Old 05-09-2007, 09:32 PM
 
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Very well stated Individuation. I have a question...what is an ASC?
Autism Spectrum Condition.

Autistics are in general not a PC bunch, but most of the ones I know prefer "condition" to "disorder" (plus, I study Catholic theology and "disorder" has heavy connotations to me!).
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#84 of 86 Old 05-09-2007, 09:34 PM
 
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Thanks, I couldn't figure it out for the life of me.
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#85 of 86 Old 05-09-2007, 11:59 PM
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Quote:
Originally Posted by Finch View Post
As much as that makes me cringe a little, I can sort of understand it. We're protective of eachother here, and it has happened on more than one occasion that someone comes in here spouting off a bunch of sanctimonious or unhelpful crap, simply because they think they know it all, yet they don't have a SN child.

[snip]

It's a hard line to walk sometimes. Like the whole vax thing, I guess.
I do see that. And I decided not to take it personally and just respond with a friendly explanation that my DS is special needs. (Even though I had already posted about his special needs and had been trying to post regularly so people would get to know me.) But if it had happened to me on a bad day, I'm not sure I would have come back. Which would have been unfortunate as there is so much good information and support here overall. So I guess I'm just thinking that in addition to us wanting "vistors" to be kind, I think we should also be welcoming, which I think this forum mostly is. So I'll stop rambling about this now.

Thanks.
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#86 of 86 Old 05-10-2007, 01:54 AM
 
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Since I don't believe that there is any "radically helpful, safe, and effective" thing for the vast majority of autistics except love, understanding, and support in finding the right level (i.e. not overwhelming) level of challenge in their lives, what I've come to be concerned with in the whole "causation" thing is the Byron Katie-style question "What is the effect of having that thought?"

Individuation used to have in her sig a quote from a blogger that said something like "How would it effect a person to be told that a major aspect of their personality is some sort of damage or defect?" That's not nearly as good as the real quote, but anyway, given that I don't believe we're really dealing in Truth with a capital T in autism theories at this time, I think it's legit to ask "what is it good for me to believe or not believe? What makes me a better parent? What helps me live with more dignity and joy?"

Sherri
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