Autism spectrum adults and the vaccine controversy - Page 3

[bjorker]

Yikes. My own thread has gone way over my head.

Some of you I'm really not sure what you're getting at, so forgive me on my lack of a direct response. It might take me a few days to decipher all this.

In the meantime, I thought I'd mention something that I just happened to read today. In the last issue of "Skeptic" magazine (and "Skeptical Inquirer" for that matter), there was an essay/article about the whole vaccine-autism debate. In the current issue of Skeptic, there is a lengthy response letter from a reader with Aspergers, detailing his skepticism about vaccine-autism skepticism (whew!). It was interesting to read. So I guess not everyone is offended by the vaccine theory. I really do like hearing the different viewpoints, though.

I also saw a bumper sticker today about autism-- something about how the person knows it came from mercury. Interesting. There was also the puzzle piece ribbon and a "someone I love has autism" (I think?) license plate frame.

This issue is following me around!

For the record, I'm not on either (or any?) side. I am wary of vaccines in general, but not [necessarily] because of autism. I don't really see how I could possibly come to some kind of conclusion about this.

It seems like such a complex issue for so many reasons. I guess that's just another reason to just concentrate on what you think is best for you and your family, instead of concerning yourself with what other people think. I'm speaking in general terms, not directed at anybody in particular. But it's still interesting to discuss.

[meowee]

Originally Posted by Mahtob

Or with anyone speaking for a whole group. However, the OP talked about people with Asperger's being angry about a particular hypothesis about autism, not that they were claiming to speak for autistics. I do not know that debating autism etiology has anything to do with speaking for autistics- it's more like speaking about them.

It would be particularly onerous with autism, though, because some of the most profoundly affected individuals cannot speak or meaningfully communicate, with assistance or otherwise, yet a whole group of less affected people now claim to speak for autistics as a whole (which is precisely what the OP was picking up on). It's not just the vaccine-autism controversy, but the vilification (justified or not) of advocacy and research groups like Autism Speaks, and numerous political agendas. Because there is little beyond consensus science linking profound autism and Asperger's syndrome, it troubles me that the mantle has been so firmly seized upon by high functioning individuals. We don't know conclusively that these disorders are one and the same, but just differing in severity.

[EdnaMarie]

I agree with you about the "speaking for" part, as well as the questionable delineation of the "spectrum" meowee, but I also do think that we need to distinguish between "speaking for" and "speaking about". To say that one group does not have the right to speak for autistics is not to vilify them- it is to state a fact. However to say that said group is hurting autistics is to speak about them, not for them. On the other hand, I agree that it would be better to err on the side of caution.

I also would point out that my experience on message boards is that a lot of the parents on there have kids who are on the "high functioning" side of the spectrum, with "mild" PDD-NOS or Asperger's, and that often these kids have been diagnosed as early as two or three which is very early to give such a fine diagnosis. When I, personally, attempt to speak for people, it is generally as someone who was such a child, speaking to parents whose kids have PDD-NOS or Asperger's, or who, according to the parent, are "on the spectrum" (a phrase I despise but anyway).

[Kristine233]

Originally Posted by Mahtob

Oh, I have my doubts. Not about this particular thread, but about the whole board.

Huh? So you think everyone on this board is fake?

[harpertrance]

thats what i was wondering....

[bjorker]

Originally Posted by meowee

It's not just the vaccine-autism controversy, but the vilification (justified or not) of advocacy and research groups like Autism Speaks

I can't tell you how much negativity I've read about Autism Speaks. I don't know too much about them, and therefore don't have much of an opinion about that either, but I'm SO SICK of hearing about it.

I'm sorry if I offended anyone by my thread title. I was just trying to be as broad as I could. I did not realise that some people might not like that wording, but I *think* I understand now where you're coming from with that.

[EdnaMarie]

Oh, I have my doubts. Not about this particular thread, but about the whole board.

Huh? So you think everyone on this board is fake?

No, no! Boy, that would be weird. In particular, my participation.

No, I meant that all of MDC (lke the rest of the net) is vulnerable to people's coming on here with fake identities.

[wendy1221]

Originally Posted by Mahtob

No, no! Boy, that would be weird. In particular, my participation.

No, I meant that all of MDC (lke the rest of the net) is vulnerable to people's coming on here with fake identities.

Whew! I'm glad to read this. I was FUMING! But I agree w/ you now that I know what you meant.

Btw, I say my kids are on the spectrum. Sorry, but it's easier than saying my oldest has Asperger's and my youngest isn't diagnosed, blah blah blah (he has a long explanation.) It's easier to just say they're both on the spectrum since they don't have the same diagnosis. KWIM? I guess I could say they're autistic, but then I worry that people get mad b/c my kids are "mild" and "high-functioning" and calling them "autistic" makes it sound "worse" than it really is. Does that make any sense at all?

[EdnaMarie]

It does make sense. My mother knew that I was different but she never gave anyone a label. She told my teachers that I took things very literally, that I was very passionate about being exact, that I had a hard time making friends, and that I was very creative.

They seemed to deal with it okay, most of the time. I don't agree with giving small children diagnoses for very mild problems (obviously, autism- "full blown" or whatever- is a different story, as are many serious problems) because a lot of things they will grow out of, but they won't lose the label.

I also dislike the puzzle ribbon, so we have totally different views on this issue. Maybe autistics view themselves as a puzzle. I might be puzzling to others, but let me tell you, you are puzzling to me, and in this case, I don't see why majority rules. I could put a puzzle ribbon next to just about everyone I know, not because they are autistic, but because people are different and it's hard to fully connect with anyone. Even for my mom and she's the least autistic person I've ever met in my life.

[Brigianna]

Originally Posted by bjorker

I can't tell you how much negativity I've read about Autism Speaks. I don't know too much about them, and therefore don't have much of an opinion about that either, but I'm SO SICK of hearing about it.

I'm sorry if I offended anyone by my thread title. I was just trying to be as broad as I could. I did not realise that some people might not like that wording, but I *think* I understand now where you're coming from with that.

sorry... but autism speaks is an anti-autistic hate group. you hang out with autistics, you're going to hear autism-speaks-bashing.

[Individuation]

Originally Posted by bjorker

I can't tell you how much negativity I've read about Autism Speaks. I don't know too much about them, and therefore don't have much of an opinion about that either, but I'm SO SICK of hearing about it.

Well, ummmm... learn about it? And formulate an opinion? Or don't read the "negativity"? But to simply state that the debate is... boring you, while remaining ignorant of the issue?

I'd be happy to read a cogent, reasoned defense of their exploitive and manipulative tactics, if such a thing could be made. Vague complaining about the "negativity," not really.

[RedOakMomma]

Originally Posted by meowee

It would be particularly onerous with autism, though, because some of the most profoundly affected individuals cannot speak or meaningfully communicate, with assistance or otherwise, yet a whole group of less affected people now claim to speak for autistics as a whole (which is precisely what the OP was picking up on). It's not just the vaccine-autism controversy, but the vilification (justified or not) of advocacy and research groups like Autism Speaks, and numerous political agendas. Because there is little beyond consensus science linking profound autism and Asperger's syndrome, it troubles me that the mantle has been so firmly seized upon by high functioning individuals. We don't know conclusively that these disorders are one and the same, but just differing in severity.

My heart feels very heavy when I hear (on this board and othes) high-functioning adults with autism talk as if autism should only be spoken about in positive terms of neurodiversity and positive adaptation. On the one hand, I celebrate them for their good fortune of having a form of autism that adds so much to their lives. On the other hand, I look at my son with severe autism and feel grief for his diagnosis and the extreme toll autism takes on his daily life. When there is so much pressure here to be positive about autism, I feel pressure to stay silent about my sadness and about the realities of his life.

I celebrate people who challenge the common perceptions about autism, but then those people are (mostly) people who can speak, write, navigate life, and have a whole host of self-help skills....all things that my son will most likely never have. Other than the word "autism," some of the people who claim to speak for my son have almost nothing in common with him. How can they speak for his condition, his diagnosis, and his life, when they have almost nothing in common with the particulars of his condition, diagonsis, and life?

It's like two completely different groups of people all under the same umbrella of a diagnosis and a word. I wish there was a better way to differenciate, a better way to advocate. There are common things we advocate for...getting rid of the notions that people with autism are unable to feel affection/emotion/connection, getting rid of many odd attitudes and beliefs about autism in general.....but when it comes to saying autism is a good thing....for my son it's really not. I can see perfectly well how it is good for many, many, people....I wish my son had a form of autism that made him one of those people. But in our case, the "celebrate autism" bandwagon is extremely bittersweet. How can I celebrate something that causes him so much pain, frustration, and unhappiness?

On the outside edges of every adaptation or change in genetics/biology, there are beings where the "adaptation" goes too far. There are extremes where the change is harmful. While I'm happy that the change has been beneficial for some, it hasn't been for my son. I wish there was a place for us.

[EdnaMarie]

I think there's some equivocation going on here.

On the one hand, groups such as Autism Speaks, and others, often count all people with ASDs as suffering from "autism" and cite their numbers as evidence of an "autism epidemic". On the other hand, when groups of people who are said to be "on the spectrum" then take issue with the aforementioned groups' activities and "advocacy", they are said to be speaking for people with "low functioning" autism (in quotes because that is not really a medical term).

People with Asperger's and "high functioning" autism have every right to speak about those groups insofar as those groups use them, and their diagnoses, and their issues, and their statistics, for their own political purposes.

I'm not trying to vilify anyone here. I'm just saying, it's not like DAN and AS never got anywhere near Asperger's. The statistics they use, and many of the children that they try to cure and/or treat, include people with Asperger's and so-called "mild" autism.

[Brigianna]

Originally Posted by Mahtob

I think there's some equivocation going on here.

On the one hand, groups such as Autism Speaks, and others, often count all people with ASDs as suffering from "autism" and cite their numbers as evidence of an "autism epidemic". On the other hand, when groups of people who are said to be "on the spectrum" then take issue with the aforementioned groups' activities and "advocacy", they are said to be speaking for people with "low functioning" autism (in quotes because that is not really a medical term).

People with Asperger's and "high functioning" autism have every right to speak about those groups insofar as those groups use them, and their diagnoses, and their issues, and their statistics, for their own political purposes.

I'm not trying to vilify anyone here. I'm just saying, it's not like DAN and AS never got anywhere near Asperger's. The statistics they use, and many of the children that they try to cure and/or treat, include people with Asperger's and so-called "mild" autism.

Not to mention that a "severely autistic" child can grow up to be a "high functioning" adult.

[Individuation]

Originally Posted by Mahtob

I think there's some equivocation going on here.

On the one hand, groups such as Autism Speaks, and others, often count all people with ASDs as suffering from "autism" and cite their numbers as evidence of an "autism epidemic". On the other hand, when groups of people who are said to be "on the spectrum" then take issue with the aforementioned groups' activities and "advocacy", they are said to be speaking for people with "low functioning" autism (in quotes because that is not really a medical term).

Yes, this. The whole "1 in 166! 1 in 166!" canard that gets shrilly repeated over and over? They aren't talking about severely affected children. They aren't even talking about children. They're talking about all new diagnoses, childhood or adult. Autism or Aspeger's. PDD or, in some cases, SID.

What is low function? Is it a measure of IQ? Verbal abiity? Social skills? Independent living skills?

Is "low functioning" a shorthand term for "mentally retarded"? Is "capable of independent living" a shorthand term for "not mentally retarded"? How many euphemisms are really getting tossed around here?

Add to this the fact that adults will receive an Asperger's diagnosis because they present to the clinician for diagnosis with normal language skills as adults. Thus the diagnosis is AS, whether or not as children they were silent, head-banging hellions who didn't look at a toilet until they were nine. Because those kids change too.

So is that adult not to be allowed to speak for others like the silent, self-injuring poop-smearer he once was? Is he only allowed to speak for himself or possibly others on the spectrum with exactly the same behavior and skill set that he has, while only entirely neurotypical people are allowed to speak for those autistics they have deemed lacking in "function"?

I'm really not getting this. There's no logic to this argument.

[Individuation]

Originally Posted by Brigianna

Not to mention that a "severely autistic" child can grow up to be a "high functioning" adult.

Or, albeit more rarely, vice versa. Not at all unheard of.

[EdnaMarie]

while only entirely neurotypical people are allowed to speak for those autistics they have deemed lacking in "function"?

:

when it comes to saying autism is a good thing

This is a straw man. Nobody says that everything about autism, as it was first described, is objectively good, as in, pleasant and useful. What some people do advocate for is an understanding that even personalities that have traits that go way beyond the norm, are personalities, and not just pathologies.

I am all for helping autistic children learn to function in the world and I believe that that takes a lot of extra effort. What I do not support is saying that these children are damaged, or that autism is not them, it is a disease they have. Those traits are part of who they are, and there are good parts and bad parts, just like with any person.

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.

But those things are said of autistics- especially among people in groups that want to cure them.

[RedOakMomma]

The rhetoric about adoption is so polarized--that's what I'm getting at. One one side (the Autism Speaks side, etc.) autism seemingly can only be spoken of as a tragedy. On the other (neurodiversity) side autism seeminly cannot be spoken of as a tragedy.

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.

I can't get on the "cure autism" bandwagon, because I see that their attitudes suggest some very demeaning things about people with autism. I also can't get on the "celebrate autism" bandwagon, because it doesn't ring true with the realities of our life with autism.

No one asks me to celebrate Tuberous Sclerosis, epilepsy, or mental retardation...why should autism be any different, when it so profoundly affects a person like my son? At the same time, with TSC, epilepsy, and mental retardation, there shouldn't be "autism speaks" type groups that speak for an entire group as if living with the condition is a tragedy. Many adults with TSC would argue their lives are anything but tragedy...however, in that group of adults I find far more sympathetic understanding for the people who have profound cases of TSC. They can celebrate themselves, advocate for themselves and their lives with TSC, while still understanding that my son(s)' case are/were tragic. That bridge seems to exist with TSC, and to some extent epilepsy and mental retardation...perhaps the autism debate is still too young, still too charged?

[EdnaMarie]

Here's the thing. When people who, on the outside, might seem to be tragically suffering, end up speaking, they often say that they feel things differently but that they are not suffering a tragedy. That, for me, is the clincher. There are many autistics who cannot speak and who look, to an outsider, like totally non-verbal cases. But they can type and can be very articulate in writing.

And when they do, they are not usually asking people for help to become different, to see things differently.

I am speaking about the most severe cases here.

So that, for me, is a big difference between autism and mental retardation. Though, there are people who celebrate Down's Syndrome, although they are a minority. Lots of people can come to terms with this and say, okay, it's not a tragedy, it's a pain, but it's not a tragedy.

I guess what I think would be a bit more fair would be to see that happen. Like you said, somewhere in the middle.

[RedOakMomma]

I hear what you're saying. I can see how many of the people who are more "affected" wouldn't wish for change (and how many parents of children, wherever those children are on "the spectrum," wouldn't wish for change).

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 know he's also mentally retarded, and that complicates things for him. But I've seen children with his diagnoses who are and aren't also diagnosed with autism. Children who have the mental abilities of a one year old, but don't also struggle with rage, self-harm, compulsive stim behaviors, fear of certain sensory experiences, an inability to speak, regression of skills, and difficulties with immitation or learning basic self-help skills. Having autism, or being autistic, on top of all his other challenges makes his life much more difficult than it would be if he was just a six year old with the cognition of a 12 month old.

I guess what I'm saying is that I know my son, and I know he's suffering. He can't speak, but he can communicate a lot. His communications, in a hundred different ways, tell us again and again that he's suffering. I don't need him to type it, write it, or vocalize it--he tells us every day when he's ripping into his face, when he's screaming in terror and anger, and when he's lashing out at the people he loves. It's not "feeling things differently"...I see him experience plenty of that. This is straight-out, undeniable suffering.

This is why I can't celebrate his autism. I can't say his is just a personality that goes beyond the norm, and that he's only feeling things differently. I know my son well, and I don't believe that would reflect his life's experience. [ETA: I'm not saying all people with profound autism, or low-functioning autism, experience suffering/misery/trauma through autism.] With my son James it was a little different...I think he suffered much less with autism, and did really enjoy "feeling things differently," even though his autism was very profound. With James he seemed to enjoy a lot of what autism brought him (though he also has some very sad experiences through it, too). That was changing a little when he passed away, and he seemed to be moving toward ds1's experience....but I can see how, with James, it was a little different. He certainly didn't suffer as much as ds1 does.