Autism spectrum adults and the vaccine controversy - Mothering Forums
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#1 of 70 Old 03-08-2008, 07:38 AM - Thread Starter
 
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I've been reading and participating in some online Asperger communities for a little while now, and noticed something that is confusing me a little bit. The people in these communities tend get VERY upset about the idea that some people think vaccines might have something to do with autism. I mean - serious anger, using lots of mean or hateful words, etc.

A lot of it seems to be based in pride. As far as I can tell, they are being defensive because they are interpreting a vaccine corrolation as being disrespectful, like saying that there is something wrong with being autistic. I don't understand this thinking. I can't talk to any of the people that have commented on this, because they're just plain mean and full of snide remarks.

These same people talk in the same snide manner about things like gfcf diets, chelation, etc. Now I'm not completely sold on that stuff myself, but I'm open to these ideas. I don't understand why they have to be so closed minded and NASTY about it. Nobody's saying that being on the autism spectrum is bad, but there are all kinds of things that are completely unexplained. What's the harm in trying to find out more about where it comes from and how it works? (I think the response to this would be, "Where are the studies to figure out where being NT come from?!" ... I've seen that style of thinking used many times) And why not try something new, if it just might help the more frustrating parts of being on the spectrum? Who really wants to have meltdowns? Not me.

Some of them seem to think that there is some other agenda going on. Like parents claiming vaccine damage to get something out of the government. I guess. I don't know...
It's been an especially hot topic lately, and I'm tired of reading all the closed-minded angry rants that say nothing convincing whatsoever. I am getting really frustrated by it, because I don't understand why they're all so angry.

To me, it seems like any insight into Autism could provide ideas how to best stay healthy and happy, and better able to take care of ourselves. Knowledge is a good thing. Right?
It just upsets me sometimes...
I can't help but wonder if I'm seriously missing something, here.

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#2 of 70 Old 03-08-2008, 08:42 AM
 
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i think alot of people (not just autistics) feel like the vaccine issues, heavy metal poisoning, food allergies and genetic autism are different things.

maybe it would help to understand how people might take offense to your words if you reframed it in your mind with something else. imagine if you went on a message board of gay adults and started saying similar things (what caused this, what can we do to fix it etc).

i wonder what board you are posting on where you were met with nothing but hostility. i have visited asperger/autism boards and although there are uppity people (like any other board), i have never been to one where that is all (or even most) of the people who post. i can't imagine what board you are at if you
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can't talk to any of the people that have commented on this, because they're just plain mean and full of snide remarks.
i don't know why you would even continue to visit a board if everyone is mean to you and you have (obviously) not gotten any explaination or reason why.

if you search 'nuerodiversity' in this forum i'm sure you'll find some links for good places to read up on it.

i am overdue for some sleep.

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#3 of 70 Old 03-08-2008, 10:02 AM
 
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Many autistic adults (myself among them) believe that autism spectrum conditions are a natural genetic variant of normal human diversity. It isn't "caused by" anything; it's just the way we are. The vaccine (and ultrasound, and wi fi, and pollution, and every other environmental "cause") autism-attributers are all predicating their views on the notion that autism is a disease or disorder, that it is something wrong, that it is unnatural, that it should be cured. There is also a moralistic element to their rhetoric, as though autism is some sort of Divine or Karmic punishment for living an unnatural lifestyle. It reminds me of the way that some fringe Christians refer to terrorist acts or natural disasters or AIDS as being Divine retribution for our sinful lifestyles.

And then there's the rhetoric used by some of the theorists about autistics themselves--lost, empty, missing, unattached, without emotion, unable to love....

There is also the fact that vaccine theorists donate copious amounts of money to cure-autism groups like Autism Speaks and lobby for federal funding to research the causes and potential "cures" for autism. Now, those of us who are fully convinced that autism is genetic--a group that includes most knowledgeable researchers--know that the only way to prevent or "cure" autism is through prenatal testing and eugenic abortion. Many of the vaccine theorists would never support such a thing. The genetic researchers, in my opinion, are pretty much stringing them along, throwing out bones of rhetoric about environmental causes knowing that it will make the anti-vax'ers open their checkbooks, and then use the money to work on their prenatal test.

As for GFCF, chelation, supplements... again, this comes from the idea that autism is not natural, that it is external to oneself, that it is caused by something "out there." Many autistics believe that autism is intrinsic to ourselves.

For what it's worth, I am less anti-biomed than many of my fellow neurodiversity proponents, because I do believe that, while autism is not caused by food sensitivities or environmental toxicity, it often coexists with these things, so treating these conditions is a good thing in that exclusion diets, supplements, etc., can turn a less-healthy autistic into a more-healthy autistic.... but they aren't going to turn an autistic into a non-autistic.

Chelation is one thing that I believe is unsafe for anyone, however, except under supervision of a licensed professional.
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#4 of 70 Old 03-08-2008, 10:51 AM
 
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Originally Posted by Brigianna View Post
Many autistic adults (myself among them) believe that autism spectrum conditions are a natural genetic variant of normal human diversity. It isn't "caused by" anything; it's just the way we are. The vaccine (and ultrasound, and wi fi, and pollution, and every other environmental "cause") autism-attributers are all predicating their views on the notion that autism is a disease or disorder, that it is something wrong, that it is unnatural, that it should be cured.
Brigianna said it very well. What is very frustrating for me about the vax blamers is that they are wholesale ignoring volumes of science pointing to genetic factors, including identical twin studies. It's also clear to me that the so-called autism surge in the past generations is primarily due to moderate and high functioning individuals being put in the same group as profoundly autistic individuals. Since the label now applies to a wider group of behaviors, more people are included in the group, making it look like there is an epidemic, and making high-functioning individuals feel entitled to speak for more impaired individuals.

Vaccines can cause brain damage and brain damage can mimic many traits of profound autism. This highlights a serious problem with the label "autistic," that it is a label for a group of observed behaviors and traits, but beyond that cannot be exactly identified (as can down syndrome). It's consensus science. So did the child in this case have autistic-like behaviors? Yes. But was it "autism?" No one can know because identifying who is autistic and who is not is a subjective process. One expert could say yes, while the next could say no.

Another troubling aspect of the vax-blamers is that their claims effectively erase autistics from pre-vaccine history, when it is clear, looking at certain historical personages, that they may well have been autistic. It also erases the ties in families where autism is clearly a genetic trait and bond, as in mine, and leaves the gaping question of why there are unvaxed autistic children, some of whom have mothers who post on this board.
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#5 of 70 Old 03-08-2008, 03:26 PM
 
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I can't add anything except to say Brigiana sums it up for me exactly.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#6 of 70 Old 03-08-2008, 06:03 PM
 
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NAK

i agree with brig...

heavy metal poisoning, seizures and consumption of gluten can cause autistic like symptoms, but not true autism. There is a difference in having autistic traits due to outside causes and actually having autism.

vaccinations do not cause autism. the can cause neurological damage that can mimic traits of autism, but study after study is showing no link between vaccinations and autism.
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#7 of 70 Old 03-08-2008, 06:08 PM
 
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To me, it seems like any insight into Autism could provide ideas how to best stay healthy and happy, and better able to take care of ourselves. Knowledge is a good thing. Right?
It just upsets me sometimes...
I can't help but wonder if I'm seriously missing something, here.
I have refrained from joining in any discussions of autism treatment because it's a topic I don't fully understand and I don't want to alienate myself from this SN board where I find so much help and advice and understanding.

Like I said I'm not very educated on the topic, so I openly admit that I have a lot to learn. But isn't there a way to balance helping your child (or yourself) become a happy functioning contributing member of society while still preserving their sense of neurodiversity? I have a local friend whose almost 4 yr old is completely non verbal, has obvious social interaction difficulties, but she's not seeking any help for him. I've seen so much good come from relatively easy OT and ST, why wouldn't you seek that for your child? I believe in that case there is something "wrong"...when a person is unable to function in society (not just function "differently", but actually unable to function) then something is wrong, right?

There's a higher rate of autistic-like behaviors in my son's syndrome, so I've just started trying to educate myself on the topic. So again forgive me if I've said something insensitive...it's a learning process for sure.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#8 of 70 Old 03-08-2008, 06:38 PM
 
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I have a local friend whose almost 4 yr old is completely non verbal, has obvious social interaction difficulties, but she's not seeking any help for him. I've seen so much good come from relatively easy OT and ST, why wouldn't you seek that for your child? I believe in that case there is something "wrong"...when a person is unable to function in society (not just function "differently", but actually unable to function) then something is wrong, right?
That could have been written about me when my son was 4. People (including my parents) were horrified that we sought no treatment for him. Our reason were threefold-- we saw no good coming from the therapy he did receive before we terminated it, he acted traumatized and shut down during the therapy, and the therapists kept talking about him needing medication.

Also, "unable to function in society" is a relative term, especially when you are applying it to young children whose future development can't be known. We always had faith that our son would talk and use the bathroom independently. Maybe we were naive, but we turned out to be right.

It's also hard to say what improvements are caused by therapy, and which are just caused by growing older and maturing somewhat. My daughter reacts to therapy completely differently than did my son so she gets it four times a week. It's really hard, though, to say definitively that it has helped her, but it doesn't seem to be harming her.
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#9 of 70 Old 03-08-2008, 06:48 PM
 
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I have refrained from joining in any discussions of autism treatment because it's a topic I don't fully understand and I don't want to alienate myself from this SN board where I find so much help and advice and understanding.

Like I said I'm not very educated on the topic, so I openly admit that I have a lot to learn. But isn't there a way to balance helping your child (or yourself) become a happy functioning contributing member of society while still preserving their sense of neurodiversity? I have a local friend whose almost 4 yr old is completely non verbal, has obvious social interaction difficulties, but she's not seeking any help for him. I've seen so much good come from relatively easy OT and ST, why wouldn't you seek that for your child? I believe in that case there is something "wrong"...when a person is unable to function in society (not just function "differently", but actually unable to function) then something is wrong, right?

There's a higher rate of autistic-like behaviors in my son's syndrome, so I've just started trying to educate myself on the topic. So again forgive me if I've said something insensitive...it's a learning process for sure.
Children react to therapy differently. Some benefit from it, some don't. Each family needs to decide what is going to help their child be themselves and help them thrive. Seeking therapy doesn't mean you are looking for a cure and not seeking therapy doesn't mean you are against helping your child be themselves. There's a balance and that depends on each child's specific needs, whether they have Autism or not.

My son loves going to OT and he benefits from it, so we do it. But not all children are like that. It doesn't mean we are trying to change my son, only give him the tools to be who he is comfortably.

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#10 of 70 Old 03-08-2008, 07:23 PM
 
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I know someone who was told her son was autistic after the had a seizure after getting his MMR vaccine at age 2.

He FINALLY saw a neurologist when he was *15*! Diagnosis? He had brain damage from the seizures that caused autistic-like behaviors. But that's not the same as autism. He was misdiagnosed when he was a toddler.
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#11 of 70 Old 03-08-2008, 08:20 PM
 
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I do believe that, while autism is not caused by food sensitivities or environmental toxicity, it often coexists with these things, so treating these conditions is a good thing in that exclusion diets, supplements, etc., can turn a less-healthy autistic into a more-healthy autistic.... but they aren't going to turn an autistic into a non-autistic.
and they could also turn a less healthy nt into a healthier nt. i know anyone with food sensitivities could feel better if they cut out those foods. it puzzles me that people always act like it is just an autism thing.

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#12 of 70 Old 03-08-2008, 11:13 PM
 
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I know someone who was told her son was autistic after the had a seizure after getting his MMR vaccine at age 2.

He FINALLY saw a neurologist when he was *15*! Diagnosis? He had brain damage from the seizures that caused autistic-like behaviors. But that's not the same as autism. He was misdiagnosed when he was a toddler.
15?! What took them so long to get him to be seen? But yes, most neurologists order and EEG and MRI to rule out seizures and brain damage first.
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#13 of 70 Old 03-09-2008, 12:36 AM
 
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15?! What took them so long to get him to be seen? But yes, most neurologists order and EEG and MRI to rule out seizures and brain damage first.
if he had a diagnosis why would they take him to a nuerologist?

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#14 of 70 Old 03-09-2008, 12:56 AM
 
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This isn't a forum I frequent, I hope that my jumping into the conversation is alright. I'm really trying to understand this perspective, and think that I do 'get it' in terms of so-called 'high functioning autistics'. Where I get stuck is when thinking of someone like my uncle, who has autism. He is 63 years old and living in a group home. He is clearly loving and intelligent, but can't communicate with more than a few words. He understands everything that is said to him but gives one word answers made up of "yes, no, and black (coffee)". His lack of expressive language frustrates him greatly, fortunately in the past 5 years or so he's received some speech therapy. He can carry out tasks when prompted ("please put this in the car", "please put on your blue suit") but if not actively engaged by someone will do nothing.

This long spiel is an attempt to ask - this is normal? This is ok? This should be desired? I really like the correlations that have been made earlier in this discussion, likening autism to the Deaf community or the Gay community. But in those cases their differences still allow them to function, other than the problems society creates. Can the same be said about people like my uncle? Please bear with me if I've stated things in a rude manner - I'm genuinely trying to understand.

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#15 of 70 Old 03-09-2008, 01:24 AM
 
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This isn't a forum I frequent, I hope that my jumping into the conversation is alright. I'm really trying to understand this perspective, and think that I do 'get it' in terms of so-called 'high functioning autistics'. Where I get stuck is when thinking of someone like my uncle, who has autism. He is 63 years old and living in a group home. He is clearly loving and intelligent, but can't communicate with more than a few words. He understands everything that is said to him but gives one word answers made up of "yes, no, and black (coffee)". His lack of expressive language frustrates him greatly, fortunately in the past 5 years or so he's received some speech therapy. He can carry out tasks when prompted ("please put this in the car", "please put on your blue suit") but if not actively engaged by someone will do nothing.

This long spiel is an attempt to ask - this is normal? This is ok? This should be desired? I really like the correlations that have been made earlier in this discussion, likening autism to the Deaf community or the Gay community. But in those cases their differences still allow them to function, other than the problems society creates. Can the same be said about people like my uncle? Please bear with me if I've stated things in a rude manner - I'm genuinely trying to understand.

Erica
If someone doesn't like a quality in themselves its completely different than no liking a quality in someone else.

Like the correlation to the deaf community... if a deaf person wanted to do whatever they could to hear with implants (if that is an option for them) or something that is their personal choice, nothing wrong with that. If its someone else saying they need to get implants, then you have a huge issue. And thats what is happening in the Autistic community, people are trying to make choices FOR the Autistics instead of letting them be who they are and letting THEM make the choices for themselves.

There are people all over, even neurotypicals, who are not comfortable with who they are or their abilities. You don't need to be Autistic to be frustrated with yourself. People have the right to not like something about themselves. But in that same breath you'll have people who accept these things in themselves and are perfectly fine with it. To each their own.

You may like this article about a young girl named Carly who surprised her family by typing her words: http://www.ctv.ca/servlet/ArticleNew...0217/20080217/

Although I do disagree that its a "rarity" like the article wants us to believe. I just think many Autistics are misunderstood or are not given the opportunity to try or to be themselves.

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#16 of 70 Old 03-09-2008, 01:37 AM
 
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heavy metal poisoning, seizures and consumption of gluten can cause autistic like symptoms, but not true autism. There is a difference in having autistic traits due to outside causes and actually having autism.
.
Can you explain what you mean by this? I'm really curious.

My son has autism. One dr. diagnosed him with PDD-NOS, but a more qualified doctor diagnosed him with autism. He has autism.

He also has Tuberous Sclerosis Complex, and so has autism "due to an outside cause."

I think someone can have autism, the "actual" AUTISM, with an outside cause. Otherwise, why would he have been diagnosed with autism? Why would most kids with TSC be diagnosed with autism?

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#17 of 70 Old 03-09-2008, 01:51 AM
 
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redoakmomma - i think the problem is that they don't have different terms/diagnosis for the different things. what your son has and genetic autism (for lack of a better term) are different things with similar manifestations, but they are all diagnosed as autism.

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#18 of 70 Old 03-09-2008, 01:53 AM
 
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This long spiel is an attempt to ask - this is normal? This is ok? This should be desired? I really like the correlations that have been made earlier in this discussion, likening autism to the Deaf community or the Gay community. But in those cases their differences still allow them to function, other than the problems society creates. Can the same be said about people like my uncle? Please bear with me if I've stated things in a rude manner - I'm genuinely trying to understand.
My son has severe autism. It affects him in every aspect of his life, and he is also non-verbal and severely cognitively delayed. He also has trouble with violent mood swings, uncontrollable anger and frustration, and some of the other troubling challenges that can go along with autism.

I don't think it's okay. In his case, I think the autism (because it is so severe) is harmful and not desirable. I understand neurodiversity, and I think the adults with autism on this board are great advocates, but autism exists on a spectrum. While many parts of that spectrum can and should be celebrated, the kids stuck way, way, way at the bottom of the spectrum have a right to say "this sucks." So do the parents of those kids. I would change my son in a heartbeat, because the severity of his autism makes him suffer GREATLY, every day. At the same time, I can see and totally understand how the adults with autism, and parents of children with autism, would say that they wouldn't change their kids. I'm not saying autism is the problem, just the severity.

I can understand celebrating the gifts and diversity of high-functioning autism, and I can understand celebrating the differences in every child/adult/person with autism, but I do not think it's fair or right to insist that autism always be talked about as if it isn't something wrong, as if it isn't a tragedy. For some kids, it's VERY wrong. For some kids, it is a tragedy. When autism is very severe, it robs children and family of so much. I'd dare any person in this forum to spend a couple of days with my son and tell me that his autism helps him in any way, or improves his quality of life in any way. It certainly enriches many of his experiences, but I see again and again that (on balance) it takes away ten times more than it gives.

Autism exists on a spectrum, and I think our feelings about it being a blessing or being (for lack of a better word) a curse should exist on a spectrum, too.

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#19 of 70 Old 03-09-2008, 03:08 AM
 
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You may like this article about a young girl named Carly who surprised her family by typing her words: http://www.ctv.ca/servlet/ArticleNew...0217/20080217/.
That story is joyous, and I'm really happy for her and her family, but as a mom of a severely autistic child...stories like that make me cringe. Since that story broke, I've had so many well-meaning family members tell me "well, there's always hope!"...as if it's likely that such a thing would happen for our son. As if, as parents who accept him as he is, and have finally come to accept the reality of his special needs, we're somehow selling him short of his inner potential.

It's true, there is always hope. BUT...to me it parallels the story/controversy of Terri Shivo. For every rare story of someone being in a state like Terri Shivo's and waking up, there are thousands of people who never wake up. You look at reality, you look at odds, and there is NO REASON to think "waking up" is typical. With this story of Carly, while it's wonderful, it's also a fluke. A longshot. A rarity. There is no reason to think that changes like hers are anything close to typical.

Stories like that are great, but when your'e living with a child with severe SN or severe autism, the public perception of those Carly-type stories puts a lot of unhealthy pressure to "think positive" or "dream big"...to never reach the vital step of accepting reality, and accepting what IS. Every parent of their SN child has hopes and dreams, but to aim as high as some miraculous event like Carly is just unrealistic. I don't spend my time hoping my son starts typing or starts speaking...To ask me to pin any importance, any hope, any dream, on such a miniscule possibility is unreasonable. I just prepare for the life he'll most likely be leading, and I work on getting him through each day.

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#20 of 70 Old 03-09-2008, 03:10 AM
 
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redoakmomma - i think the problem is that they don't have different terms/diagnosis for the different things. what your son has and genetic autism (for lack of a better term) are different things with similar manifestations, but they are all diagnosed as autism.
Ah. Thank you. I guess I prefer the term "genetic autism" to "true autism." "True autism" has a ring of exclusivity...as if the rest of the kids with autism don't really qualify, or something. My son's autism feels pretty "true," if you know what I mean.

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#21 of 70 Old 03-09-2008, 03:49 AM
 
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Ah. Thank you. I guess I prefer the term "genetic autism" to "true autism." "True autism" has a ring of exclusivity...as if the rest of the kids with autism don't really qualify, or something. My son's autism feels pretty "true," if you know what I mean.
absolutely. like i said - i think there should be different words.

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#22 of 70 Old 03-09-2008, 06:24 AM - Thread Starter
 
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Wow. I did not expect such a response. I hope I didn't upset anybody, but you all have given me lots of things to think about. I really appreciate your calm responses to my questions! It all makes a lot more sense to me now.

Also, to clarify about one of the discussion boards where this topic has been very prominent-- they weren't hostile to me specifically. I mostly stayed out of it. They just continually post snide, angry remarks about people like Robert F Kennedy Jr, related organisations and causes, etc. Apparently John McCain of all people just made some comment relating vaccines to autism, so there has been lots of angry talk about that.

Anyway, thank-you, everyone. I really appreciate you sharing your thoughts and stories here.

Weirdo Mama to amazing Aurelia, age 9 & Ember Roslyn, age 3!
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#23 of 70 Old 03-09-2008, 08:38 AM
 
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Many autistic adults (myself among them) believe that autism spectrum conditions are a natural genetic variant of normal human diversity. It isn't "caused by" anything; it's just the way we are. The vaccine (and ultrasound, and wi fi, and pollution, and every other environmental "cause") autism-attributers are all predicating their views on the notion that autism is a disease or disorder, that it is something wrong, that it is unnatural, that it should be cured. There is also a moralistic element to their rhetoric, as though autism is some sort of Divine or Karmic punishment for living an unnatural lifestyle...

And then there's the rhetoric used by some of the theorists about autistics themselves--lost, empty, missing, unattached, without emotion, unable to love....

There is also the fact that vaccine theorists donate copious amounts of money to cure-autism groups like Autism Speaks and lobby for federal funding to research the causes and potential "cures" for autism... The genetic researchers, in my opinion, are pretty much stringing them along, throwing out bones of rhetoric about environmental causes knowing that it will make the anti-vax'ers open their checkbooks, and then use the money to work on their prenatal test.

As for GFCF, chelation, supplements... again, this comes from the idea that autism is not natural, that it is external to oneself, that it is caused by something "out there." Many autistics believe that autism is intrinsic to ourselves.

...I do believe that, while autism is not caused by food sensitivities or environmental toxicity, it often coexists with these things, so treating these conditions is a good thing in that exclusion diets, supplements, etc., can turn a less-healthy autistic into a more-healthy autistic.... but they aren't going to turn an autistic into a non-autistic.

Chelation is one thing that I believe is unsafe for anyone, however, except under supervision of a licensed professional.
:

I was thought to have autism as a toddler (no formal tests, thanks to my mom ), but when I grew out of the more severe spinning / head banging / obsessive / sensory issues, and just became a total nerd, I was no longer considered to have anything. However when I read about Asperger's I realized that that was me.

I too find the vaccine theory angering, for several of reasons:

1. First of all, it is untenable- there are so many holes in the theory it's shocking, and that is not even taking into account the serious ethical and scientific flaws in the "studies" carried out to prop it up (not going to get into this here, you can search my posts for "autism" if you want to know more about what I think about it);
2. It is annoying to have people saying that those of us who happen to think differently (in particular, not the severe cases of autism, but Asperger's, ADD sufferers, etc.) are brain-damaged. I am not brain damaged, just like a short person is not height-damaged. My talents do not lie in the "getting people to like you" sphere. They are more in the "being able to solve puzzles quickly" sphere.
3. I find it insulting to suggest that my inherited personality is not a personality, but an illness. They all did fine as nerdy loners and so do I.
4. It makes me angry that instead of trying to see where the real problems are and how we, as a society, can cope with different personalities and different problems (be they a different way of attacking problems, or a total inability to deal with most of the sensory pandemonium that passes for an environment in many homes), some people are spending so much time and effort trying to instead stop people getting vaccinated for the poliovirus. Having worked with vulnerable populations, this just infuriates me. It's not going to work and we are going to end up with more AIDS patients getting measles, more children getting polio, and more pregnant women exposed to rubella. And autism rates are not going to go down.

I cannot fathom what it must be like for a parent to watch her child develop autism. My own child got sick with pneumonia after a hard winter and I was going insane and that's not even remotely comparable. I hold no judgment for the parents who desperately cling to any hope for a way to get their baby back to how he was before the signs of autism became clear.

I do judge the people who perpetuate lies about whether or not this is possible and who sell dangerous and disturbing treatments to parents in the depths of this desperation. That is really wrong, in my opinion.

On another note, I would ask whether you joined any autistics communities on the net? Asperger's and autism are on the "autistic spectrum" but they are also very, very different. An adult with Asperger's is as likely as not to live a happy, well-adjusted, fulfilling life without any special education or facilities. The same cannot be said for autistics.

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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#24 of 70 Old 03-09-2008, 10:20 AM
 
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Can you explain what you mean by this? I'm really curious.

My son has autism. One dr. diagnosed him with PDD-NOS, but a more qualified doctor diagnosed him with autism. He has autism.

He also has Tuberous Sclerosis Complex, and so has autism "due to an outside cause."

I think someone can have autism, the "actual" AUTISM, with an outside cause. Otherwise, why would he have been diagnosed with autism? Why would most kids with TSC be diagnosed with autism?
Autism is diagnosed behaviorally. So anyone with autistic traits will be diagnosed as autistic. The problem here is that even the word "autism" is poorly defined. It is used to describe the traits rather than the cause. Traits which are called autistic can be caused by many things... but having a medical condition that manifests with autistic behaviors really isn't the same as being wired like we are. And I suspect that it is much more frustrating to be a naturally non-autistic person who has autistic traits due to a medical condition, than it is to be a genetically autistic person.
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#25 of 70 Old 03-09-2008, 12:29 PM
 
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Personally I think there is an ethical issue with so-called high functioning autistics speaking for so-called low functioning autistics, particularly, as brigianna pointed out, given that autism is diagnosed behaviorally, and we simply do not know that being a nerdy loner is the same "disorder" as profound autism, but just on a lesser scale. And as mahtob pointed out, there are many children who exhibit profound autistic traits as children (I did) only to become more functional, but not exactly normal, as they age. This just confuses the issue even further.
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#26 of 70 Old 03-09-2008, 12:55 PM
 
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#27 of 70 Old 03-09-2008, 12:56 PM
 
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wow what an intersting discussion! I'm learning alot.

I just wanted to wade in a bit because I read alot on the science of autism research (well mostly sciam and discovery mag) and what they seem to say is that autism develops in the presence of unusual brain development. There is certainly a strong genetic component for some (they've identified several genes alread that explain about 20% of cases I think) and definitely some environmental factors.

But what I wanted to add is that I've noticed a distinction between kids who seem to have traits from birth versus those who "develop" autism around the age of 2. My DD does not have autism and for a while was on the "line" of PDD-NOS (it was a suggested diagnosis but has now been ruled out) and her "issues" developed around the age of 2. It was very hard for me to see a child who was developing "normally" suddenly fall so far behind her peers - it was like she plateaued for a year and she is still playing catch up. So of course I thought there was a "cause" - I wondered about the MMR. I wondered about an allergic reaction she'd had to an antibiotic. I wondered about high fevers.

But all my reading has kind of reassured me that what happens in some kids is that their brain grows faster than average around the age of 2 - the most common characteristic of autistics of that age. It causes all kinds of issues because the brain is supposed to be weeding out neurons at that age but it's still *adding* them and causing all kinds of confusion. So maybe what looks like an environmental factor is instead really genetic, it just doesn't show up until age 2 or so when new processes are supposed be kick in but don't or are delayed. Anyway it made me feel a little better that maybe it wasn't anything that she was exposed to, but rather a developmental difference that just didn't kick in until age 2.

Anyway, I don't know if this makes any sense but I would strongly suggest folks read up in Scientific American on this stuff - there is an article almost every month in there about the research being done and it's just really fascinating.

eta: My worry with the chelation therapies and so on is that they are "snake oil" for parents who are desparately seeking a cause for their child's condition....they are not based on sound research about the root causes of autism. So I just worry that parents are being taken advantage of by bad science....jmo of course.

hope this is helpful
peace,
robyn
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#28 of 70 Old 03-09-2008, 02:45 PM
 
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eta: My worry with the chelation therapies and so on is that they are "snake oil" for parents who are desparately seeking a cause for their child's condition....they are not based on sound research about the root causes of autism. So I just worry that parents are being taken advantage of by bad science....jmo of course.
Yeah, I agree with you on this, but I think far worse than the impact on the parents' bank accounts is the fact that children have been damaged and killed by these treatments. I just think... the fact that that hasn't been mentioned is a bit of a problem.

OP, meowee and brigianna did a pretty good job of explaining the whole thing. I would like to add something that none of us like to say, namely that on an internet forum you're dealing people who may or may not be who they say they are, and that person-with-autism-who-is-militant-about-neurodiversity is a pretty common pseudo-identity. A lot of people, especially, parents, have been taken in. So I would not tar all autistic adults with the brush of some that you met on a message board, because frankly, you don't know what you might be dealing with.

The Global and Regional Asperger's Syndrome Partnership (GRASP) tends to articulate the adult autistic position on vaccines with equanimity and erudition. I can forward you some of the things from their email list, if you'd like. If you're looking for the perspective of autistic adults, starting from a reputable organization might better than, you know, the "asperger" community on livejournal. (Hey, I'm a member there too! I'm not trying to be snarky!)

There's a lunatic fringe to every group--Kevin Leitch (blogs about the autism/vaccine theory) had his daughter's life threatened by a parent who believes vaccines cause autism. Nonetheless, I do not make statements like "Why do parents who believe vaccines cause autism threaten to kill children?"
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#29 of 70 Old 03-09-2008, 02:54 PM
 
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"Autism is diagnosed behaviorally. So anyone with autistic traits will be diagnosed as autistic. The problem here is that even the word "autism" is poorly defined. It is used to describe the traits rather than the cause. Traits which are called autistic can be caused by many things... but having a medical condition that manifests with autistic behaviors really isn't the same as being wired like we are. And I suspect that it is much more frustrating to be a naturally non-autistic person who has autistic traits due to a medical condition, than it is to be a genetically autistic person."

Well said Brig. The word Autism is such a wide spectrum and is so poorly defined, and like she said it is used to describe the traits rather than the cause. Having something that causes autistic traits does not mean they are "wired" the same as "natural autistics"

I am NOT saying that people who have underlying causes to autistic traits do not have Autism, because it is all under the same umbrella. The word seems to be thrown around a bit to describe many symptoms, and not the actual cause.

When people with underlying causes discover what is causing them to behave in a certain way, then they may have options to try. Eliminating certain food products, or medications and such. People with no known cause of their Autism do not have that option.
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#30 of 70 Old 03-09-2008, 03:14 PM
 
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Originally Posted by hippymomma69 View Post
eta: My worry with the chelation therapies and so on is that they are "snake oil" for parents who are desparately seeking a cause for their child's condition....they are not based on sound research about the root causes of autism. So I just worry that parents are being taken advantage of by bad science....jmo of course.

.... I agree with you. Chelation is very dangerous and can cause hypocalcemia, which is what killed 3 people, it caused cardiac arrest, kidney toxicity, and other side effects.

There is really no scientific support that says that chelation is a way to cure autism. You can have a heavy metal screening done, to see if your levels are high. - Too many parents just jump into the "lets try it" thing, and do not get educated on the subject.
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