Autism spectrum adults and the vaccine controversy - Page 3 - Mothering Forums
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#61 of 70 Old 03-11-2008, 04:08 PM - Thread Starter
 
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Alright, I'm going to leave you guys to it. Quite honestly I've lived in my own little world for awhile and had no idea about the broader implications of the many issues that seem to surround Autism. And high functioning- whatever I'm supposed to call it. I didn't live by labels, and didn't talk to anyone about it, and I thought it would be a good thing to venture out in that because I'm so used to being completely alone in all of this. Therefore, I have not done the hours of research and the subsequent forming of opinions like you all seem to have. I thought I was asking a simple question here, because I couldn't have possibly known all the implications. Now, I don't really feel like there's anything I could say that's not going to upset someone. I really just don't know these things at all. I'm sorry. I don't. I have a lot on my plate as it is, and I don't understand the background and the politics of all of this.

I do not appreciate being told what I should learn about. Again, all I've heard are people saying "Autism speaks sucks" sort of statements without much to back it up. Repeatedly. Since I have other major things going on in my life right now, it wasn't something I felt the need to run right out and research to death. I am sorry if that actually offends someone, but instead you could just inform me your opinion and why, and then I'll know. But nobody has ever done that, it's all been whining without stating a point (and I wasn't/am not referring to anyone here). And then I'll have something to go on. You guys just launched into a discussion about stuff that is over my head, because, again, this is not something that I've spent a lot of time on (which is why I was asking about all of this in the first place!), so I'm just going to leave you guys to it.

That's not to say that I won't find out more about all of this and form some more opinions, but a lot of this is new to me, and I just haven't gotten there yet. This is no longer a safe space for me. I had zero intention to step on any toes, and I really wish I hadn't said anything at all.

Weirdo Mama to amazing Aurelia, age 9 & Ember Roslyn, age 3!
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#62 of 70 Old 03-11-2008, 04:09 PM
 
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Originally Posted by RedOakMomma View Post
I wish there were people in between, an advocacy group in between. A support group in between. I wish more people could bridge the gap and be comfortable saying that autism (in all its varying forms) can be good for some but sad for others. The outcomes are mixed, and so it's okay for our feelings to be mixed. While some celebrate, others should be allowed to mourn.
Actually, I think MOST people feel this way. I get so tired of people thinking that having a child with autism is the end of the world. It's THE BIGGEST FEAR outside of pregnancy and childbirth related fears in my DDC. Seriously, the #1 thing women here listed they are afraid of. Not some other condition where the child would be in pain or severely impaired, which I am more afraid of, b/c I can't HELP a child who is in chronic pain, KWIM? I would love that child and do everything I could for him, but I think that would be far harder than having a child with autism. People seem to think they're better of w/ no kid than to have a child w/ autism. That's seriously the impression I get sometimes. Parents who DO have a child w/ autism absolutely don't feel this way, because they know that for every ounce of sorrow they have for their child, that same child brings them far far more joy than that sorrow could overshadow. I HATE that agencies like Autism Speaks further the "having a child with autism is one of the worst things in the world that could happen to your family" kind of thinking. I HATE it! Yes, there is some sadness knowing that your child isn't "normal" and will always have trouble coping with things that neurotypical children/adults deal with no problem, but at the same time, your child is still a child with thoughts, feeling, likes and dislikes, strengths and weaknesses. And they love you, and you love them. They are people, first and foremost. For me, that is what neurodiversity is all about. Reminding everyone that these people are PEOPLE, first and foremost. Their disability is secondary to their personness (I think I made that word up), not their defining quality. And yes, I do think autism is a disability. I am NOT neurotypical. Sometimes that's a boon, but most of the time, it IS a disability.
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#63 of 70 Old 03-11-2008, 06:23 PM
 
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...fascinating discussion!

Just wondering if some of the Autism Speaks rhetoric is to get the money flowing? I saw the video and to me it was pretty typical of a fundraising video. If all you saw was happy, well functioning families, I don't think people would be whipping out the checkbooks. So it's a distortion of reality - but one that seeks to get donors giving money?

...same with the idea that it is "curable". If they didn't portray it as something that could be "cured" with more research/funding, why would anyone give the money? If you saw a video about someone who was a well-adjusted autistic who didn't need to be cured, then why would you give money?

how that for a straw man? LOL

just wondering...
peace,
robyn
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#64 of 70 Old 03-11-2008, 06:57 PM
 
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Originally Posted by hippymomma69 View Post
...fascinating discussion!

Just wondering if some of the Autism Speaks rhetoric is to get the money flowing? I saw the video and to me it was pretty typical of a fundraising video. If all you saw was happy, well functioning families, I don't think people would be whipping out the checkbooks. So it's a distortion of reality - but one that seeks to get donors giving money?

...same with the idea that it is "curable". If they didn't portray it as something that could be "cured" with more research/funding, why would anyone give the money? If you saw a video about someone who was a well-adjusted autistic who didn't need to be cured, then why would you give money?

how that for a straw man? LOL

just wondering...
peace,
robyn
i think it's obvious alot of what autism speaks does and says is for money. i don't see how that is a straw man?

Mama to Jet 6/05, Marvel 8/06 and Cash and Fox 2/09
Expecting Ada Marianne 11/14
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#65 of 70 Old 03-12-2008, 03:03 AM
 
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i think it's obvious alot of what autism speaks does and says is for money. i don't see how that is a straw man?
I don't think it is a straw man at all. It's not even the kind of argument that could be a straw man, even if it wanted to be.

Bjoker, please don't feel bad about starting this thread. Not all the threads here are always full of smileys and hearts and "cutes". The people participating on this thread have very strong feelings about it but from what I can see, nobody has stepped on anyone's toes- yet. We're still way on the side of "civilized discussion".
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I also see my son, and see him suffer. He's angry, he's violent, and he hurts himself. His inability to control his rage scares the hell out of him. I see suffering in his eyes when he goes so far with his stimming that he causes bodily harm. I see his limitless frustration at not being able to process information or communicate what he needs. I see his fear, his terror, of simple things that overload his senses.

In so many ways, what autism adds to his life makes him miserable.
I am so sorry that he is suffering. I guess where this fits in to what I am trying to say is that we can look at the child and say, he is unhappy because of who he is, or he is unhappy because we cannot provide him with the environment he needs in his condition.

Could any human being meet his needs fully? Probably not. But still, to say that a person should be able to tolerate X, Y, and Z, and if they don't that it's not X, Y, and Z that are bothering him, but the condition that causes the intolerance, is kind of missing a piece of the puzzle.

We don't say that lactose intolerant people (excuse the light analogy) are miserable with gas all the time and that lactose intolerance makes their lives miserable. We tell them- Don't drink milk. Milk makes them miserable, not lactose intolerance.

Can your son avoid all the sensory input that bother him? Sadly, it sounds like you are doing your best and that is not possible. But I would maintain that it is the input, not the disease, that makes him unhappy. That is not to place blame on anybody- the world is what it is and there is only so much you can do.

But it is this framing of the issue- "It's the autism" "It's not her, it's autism" "The autism causes...", the separation of the condition from the individual, as if it was not an inherent trait of the individual, that bothers some people. And this way of framing the issue comes more naturally when one assumes that it has an outside cause, such as Thimerosal. Conversely, when one assumes that autism has an outside cause, it is easier to fall into that line of thinking.

RedOakMomma, I hope you don't feel that I've judged you or assumed in any way that there is anything that you could be doing differently in any way. I do not know you or your sons or your situation. I am only speaking to a certain manner of talking and thinking about autism that bothers me, not to the behaviour of parents with SN kids, which I would not presume to judge.

It's not that the stay-at-home-parent gets to stay home with the kids. The kids get to stay home with a parent. Lucky Mom to DD1 (4 y) and DD2 (18 mo), Wife to Mercenary Dad
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#66 of 70 Old 03-12-2008, 04:08 PM
 
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, No I don't think you're judging me. I do think my son has a pretty extreme existence, and it's not all that easy for people to understand.

Also, in our case, there is an outside cause. His autism is caused by having TSC. So I feel completely comfortable saying things like "It's not ds1, it's the epilepsy" or "it's the TSC" or "it's the autism." I don't feel the autism (or any of his other diagnoses) are at the core of my son...rather, they're just layers wrapped around him. They're part of his whole, they're his life, but they're not at his core. That's just how I feel.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#67 of 70 Old 03-12-2008, 05:55 PM
 
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You never hear a parent of a mentally retarded child say, "He's so great, it's just the retardation that is taking him away from me." You don't hear people talking about mentally retarded children saying that they are locked up inside their heads because they cannot understand certain concepts.
I normally lurk and stay out of these conversations because I am not autistic and neither is my child. However, you brought up a point that is relevant to my situation and I thought I could maybe put in words how this statement is not entirely true- at least, not always.

My daughter has a rare chromsome disorder. I feel somewhat the same way about chromosome disorders as many here feel about autism. That it is not bad or wrong for people to be different, that it is our society that forces the separation between "normal" and otherwise, and decides who is okay and who is not, rather than striving for inclusiveness and acceptance whenever possible. I too watch parents-to-be express horror over the possibility of something being wrong with their baby- and unlike the autistic community, which only fears the potential for a prenatal genocide, it actually happens to children like mine, whose chromosomes are abnormal, every single day. In fact, I've had to deal with a pregnant mother in the 3rd trimester coming to our parenting chromosome disorders SUPPORT group to get support for letting her baby die after it was born from a relatively minor defect because in her own words, while she would have definitely saved it if it was normal, she didn't want to save a baby who would be mentally challenged.

My daughter is too young to be pronounced "retarded" but it's clear she has delays in all areas, including cognitive. Do I love my child more than my own life? Of course. Would I have had her, knowing everything I know now? Of course. No question. But do I think that this chromosome disorder is, essentially, her? The soul, the persona, the spirit, whatever you want to call it? No I don't. I believe cognitive/mental disability can be exactly like physical disability. Not WHO or WHAT you are but, in a way, a condition that is perhaps not masking or "locking you up" but making it much more difficult *in the world that we're in* to express 100% of what you are thinking and feeling. I actually think mental or cognitive disability is a form of physical disability, indeed many times it is. I can see on an MRI that my daughter's brain myelination is delayed. Others cannot see but know their child's "retardation" is caused by a lack of oxygen at birth, a severe trauma, a lack or excess of genetic materal. All of these things are essentially physical when you boil them down, and therefore IMO actually DO, in one way or another, hamper the individual's freedom to develop, communicate, react, or explore in relation to this world we are in. Not a fairy tale world where everything they could possibly need to level the playing field is available- but THIS world.

So while I think it's extremely important to use respectful terminology which does not include implying an individual is "locked up" or "taken away"- I think saying that it is NEVER okay to imply that ANY child could be happier, or at least their life be easier, without the autism- or mental retardation- and that therefore you wish they didn't have it- is a little shortsighted. And that's a really long winded way of saying that actually, some parents of MR children do believe that the MR is not who their child truly is, that inside there is a soul without any cognitive delay- and while we love and accept them fully we may also wish that the MR wasnt' there, and believe that our children would be the same wonderful person without it, and there's nothing wrong with that as long as we're not working day and night to "cure" them at any cost to their health and happiness. But her delay has taken a part of the communication away and made life harder FOR HER- not just me. It's not the same thing as autism but then, autism isn't all the same, and I think that's where the conversation halts. I know children with my daughter's chromosome disorder who are also dx'ed autistic. Are they, or is it a coincidence that their particular constellation of chromosomes causes them to behave in a way perceived as autistic? Especially these individuals with severe genetic disorders, who should be speaking for them, if not their parents, or whoever spends day and night loving and caring for them? It's as if once the dx of autistic is confirmed, regardless of any other mitigating factors, including severe vaccine reactions, genetic/chromosome abnormalities, or any other situation that can "cause" autism OR autistic-like behaviors, some people believe that no matter what, it has to be positive or it's anti-autism. Isn't there even a tiny gray area where this actually does suck for some people- and I'm not just talking about the parents- the actual affected person?? Is there any other condition or "disorder" that every single individual affected by it agrees and feels the same about having? Or if, as some say, it is a part of their intrinsic being and personality to be autistic, without any environmental factors, isn't that different than someone with known medical historty that has affected them neurologically?

sorry this got so long, and I really hope it came out in the tone I wanted it to, which was trying to understand lots of really complicated ideas and feelings more deeply. thanks to anyone who got through that!

DD1 7/13/05 DD2 9/20/10
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#68 of 70 Old 03-12-2008, 06:00 PM
 
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very well said.
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#69 of 70 Old 03-12-2008, 06:35 PM
 
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I agree and very well said Bri276.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#70 of 70 Old 03-12-2008, 06:41 PM
 
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I think a key difference between autism (and other mental differences) and, say, a physical disability, is that autism is essentially a personality type and a thinking/learning style. And while aspects of your physical being are part of who you are, I think that your personality, your thinking and learning style, are much closer to your essence as a person. And while some autistics wish to change their personalities to become non-autistic, I don't think it's for non-autistics to judge our personalities and thinking styles as wrong.
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