Autism Speaks - is it good or is it bad?

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katzefrau
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26 Jun 2010, 10:55 pm

hutchscott wrote:
The corollary to this question would be Michael John Carley, friend or foe? I still haven't figured him out.


i'm reading his book AS From the Inside Out and so far i think it's great.

as for his personal affiliations, judging by what's written on the politics page ( < link) of the GRASP website, i'd say he's both ethical and diplomatic; he disagrees with the curebies but has no interest in alienating anyone in the autism community. he's not "in bed" with Autism Speaks because someone reviewed his book. there's a big difference (in level of accountability for one's words) between voicing an opinion on an internet forum (what we're doing) and being the executive director of a nationwide advocacy group (what he's doing). know what i mean?

some people hate Tony Attwood. some people hate Alex Plank. there are opinions on everyone who provides a public voice for autism - opinions are very black and white.

about Autism Speaks:

AnnePande wrote:
They apparently portray autism as a suffering for the parents, not speaking about what it is like to be autistic.


^ that's the big problem i have with them. it's really: "Parents of Autistics Speak"


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27 Jun 2010, 12:32 am

How's Autism Awareness? Also....what's the name of the group that Toys R Us works with?

To be honest...half the messages about "solving the puzzle" just sound a bit shifty to me.

What puzzle? Oh you mean the one non-Autistic people don't understand, but the one Autistic people( including HFA) can understand just fine? You mean that one?



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27 Jun 2010, 1:41 am

Wrong Planet is great, but for all his efforts, Alex has not picked up much money from the members.

He does not use the Marketing that Autism Speaks and PETA do. They have Professional Marketers, Alex only has Ethics.

The money to be had comes from the uneducated about Autism, most who are looking for a tax deduction, and in that game we rank with clubbing baby seals. Also, seals do not vote, or buy products.

Autism Speaks does wish there were other words. Consider that Autism also covers Broader Autism Phenotype, non disabled NTs with geek traits, many who would not work for Autism Speaks wages.

Asperger's and HFA often do better than those bland and boring NTs. Helping them get their third Doctorate is not much of a sales pitch.

So they focus on the Shock Value, and while I can spend many happy hours spinning the polished copper blades of my fan, they have to make it a horror for those who watch.

What brings in the money is getting the uneducated to chose which cause to make the check out to.

It comes down to something like, At least you can club baby seals, our company sells cleaning products, those Autistics paint on the wall with feces, that is the cause to support, not the little tards, but the parents who have to do the cleanup. One in 150 is a lot of a house cleaning demographic.

Media is another, we are seeking people with money, and the intelligence of an eleven year old. Being a leading doner to Autism Speaks exposes our product to a lot of that demographic.

They do hold gallas, with big name entertainment, it is a great chance to network.

So the target doner is Corporate, seals are not consumers, and those hairy pinkos are seal, whale, tree involved, so it is Political, and even if one could extirminate the autistics, it would be seen as a good thing.

So amoral people are raising money from amoral people, it's America.

Where the money goes seems to me Autistic, researchers, scientists, a bunch of geeks, nerds, eggheads, you know, the Bookish!

Autism Speaks is chartered for research. The main complaint I hear is they are not a club for autistics that directly supports the members. Their cry is, All that money could be spent on us!

The same has come up on Wrong Planet. Alex created a forum for all voices, yet some think it should be a Community, and they the natural leaders of said community. Their first act would be to silence all voices that do not agree with them.

A lot seem to think that some natural ability should put them on the Autism Speaks Board, that they should regulate ideas on the internet, because they say so.

I chose Scientific Research and Freedom of Speech.



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27 Jun 2010, 1:43 am

Autism speaks disgusts me. I think that the way that the use of the term public information film for things like "Autism Everyday" is a misnomer. I feel that to say that saying Autism Speaks is a "autism advocacy organization" is like saying that Jack the Ripper is a activist for women's rights. I do not think that they will serve the interests of teenagers and adults with autism well.

http://www.autismspeaks.org/about_us.php is where they claim "Autism Speaks has grown into the nation's largest autism science and advocacy organization"

I might be misunderstanding their film but it seems like it is a hate film which is likely to incite hatred of autists by their parents. The moment where the mother explains how she considered killing herself plus her autistic child was unspeakable. I think any film maker with morals would have cut that moment out.

If I was a film maker and while interviewing someone I got footage like that, then out of human decency and for moral reasons I would edit it out and not release that part of the interview to the outside world.

The inventor wrote that autism speaks is one of the few bodies which fund research on autism, but what about the medical research council in the UK and Nancy Lurie Marks Family Foundation. Both of these bodies have funded SBC at Cambridge. Does anyone know anything about the latter body.


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27 Jun 2010, 3:14 am

Inventor wrote:
Wrong Planet is great, but for all his efforts, Alex has not picked up much money from the members.

He does not use the Marketing that Autism Speaks and PETA do. They have Professional Marketers, Alex only has Ethics.

The money to be had comes from the uneducated about Autism, most who are looking for a tax deduction, and in that game we rank with clubbing baby seals. Also, seals do not vote, or buy products.

Autism Speaks does wish there were other words. Consider that Autism also covers Broader Autism Phenotype, non disabled NTs with geek traits, many who would not work for Autism Speaks wages.

Asperger's and HFA often do better than those bland and boring NTs. Helping them get their third Doctorate is not much of a sales pitch.

So they focus on the Shock Value, and while I can spend many happy hours spinning the polished copper blades of my fan, they have to make it a horror for those who watch.

What brings in the money is getting the uneducated to chose which cause to make the check out to.

It comes down to something like, At least you can club baby seals, our company sells cleaning products, those Autistics paint on the wall with feces, that is the cause to support, not the little tards, but the parents who have to do the cleanup. One in 150 is a lot of a house cleaning demographic.

Media is another, we are seeking people with money, and the intelligence of an eleven year old. Being a leading doner to Autism Speaks exposes our product to a lot of that demographic.

They do hold gallas, with big name entertainment, it is a great chance to network.

So the target doner is Corporate, seals are not consumers, and those hairy pinkos are seal, whale, tree involved, so it is Political, and even if one could extirminate the autistics, it would be seen as a good thing.

So amoral people are raising money from amoral people, it's America.

Where the money goes seems to me Autistic, researchers, scientists, a bunch of geeks, nerds, eggheads, you know, the Bookish!

Autism Speaks is chartered for research. The main complaint I hear is they are not a club for autistics that directly supports the members. Their cry is, All that money could be spent on us!

The same has come up on Wrong Planet. Alex created a forum for all voices, yet some think it should be a Community, and they the natural leaders of said community. Their first act would be to silence all voices that do not agree with them.

A lot seem to think that some natural ability should put them on the Autism Speaks Board, that they should regulate ideas on the internet, because they say so.

I chose Scientific Research and Freedom of Speech.



it's not America dude; it's humanity.



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27 Jun 2010, 8:42 am

Mudboy wrote:
MrXxx wrote:
Mudboy wrote:
They are putting money in their own pockets by purposefully telling lies and providing disinformation.


Personally, I find those to be awfully strong words, and not anything I would accuse them of without proof.

If it happens to be false, the above really amounts to slander. I'm not willing to agree with what you've said without some pretty powerful evidence.

I don't like some of what they do, but I stop far short of accusing them of lying and stealing.
They are the worst kind of of people that exist in the world today. They are not immoral, they are amoral. They are doing nothing illegal. They are not stealing, and the information they present are opinions not facts. My statement is not slanderous because what they present about my life is not true and therefore a lie. All they can do is claim ignorance or indifference about the way many autistic people feel about their portrayals of us.
I find amorality to be as evil as immorality. One is evil and the other is evils accomplice.


What they present about your life? They've written about you personally, as an individual?

I'm pretty sure that's not what you mean. No, you are equating what they write about autism in child as somehow being about 51 year old you. It isn't, on two levels. There's the age thing. And there's the fact that autism is varied, and any generalizations are going to have autistic individuals that they don't fit.


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27 Jun 2010, 2:27 pm

I'll simply say, I'm fine with who I am as a person so, there is no need for me to take some cure per se.Anyways, AutiismSpeaks can about whatever they wish to cause, I'm not going to alter myself..



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27 Jun 2010, 3:23 pm

I think I'm convinced now that Autism Speaks doesn't advocate for us, especially after learning that the president of the so-called "orginization" makes $600,000 a year! Where does all that money go?



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27 Jun 2010, 3:28 pm

TBH, I don't know much about Autism Speaks, but, from what I have read on here, they sound like they are comprised of stressed out parents of autistic kids, people who struggle raising autistic children, and they speak from that point of view. They don't represent the child with autism, just the parent, and not every parent. Just the stressed out ones who are having trouble coping.



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27 Jun 2010, 4:03 pm

ooOoOoOAnaOoOoOoo wrote:
TBH, I don't know much about Autism Speaks, but, from what I have read on here, they sound like they are comprised of stressed out parents of autistic kids, people who struggle raising autistic children, and they speak from that point of view. They don't represent the child with autism, just the parent, and not every parent. Just the stressed out ones who are having trouble coping.


That is true. Stressed out parents are the ones they are representing. Even so, they aren't doing a good job meeting the needs of even those parents they represent. The needs of autistic adults dovetail with the needs of parents of autistic children at precisely age 22. That's the cut-off for Special Ed in the U.S. At that age, the parents of the former child are now parents of an autistic adult. That adult has needs that Autism Speaks is simply not addressing. Maybe the parent will meet those needs. But parents are inevitably older than their children, and sometimes also become unable to meet needs for reasons other than old age. The stressed out parents would be better served by organizations that address the absolute biggest stress: what will become of your child when you can't care for him/her anymore? Autism Speaks isn't helping with that.



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27 Jun 2010, 4:50 pm

Asp-Z wrote:
http://notautismspeaks.tk/ <-check that site out and tell me for yourself.

Image


Its sickening.. I have worked for a charity once, which actually used its funds wisely. Everyone was on average to lower incomes, and as much money as possible was sent to the impoverished children, to the point of the office being eeky and creaky and not having a kitchen tap that worked...


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27 Jun 2010, 5:04 pm

Janissy wrote:
ooOoOoOAnaOoOoOoo wrote:
TBH, I don't know much about Autism Speaks, but, from what I have read on here, they sound like they are comprised of stressed out parents of autistic kids, people who struggle raising autistic children, and they speak from that point of view. They don't represent the child with autism, just the parent, and not every parent. Just the stressed out ones who are having trouble coping.


That is true. Stressed out parents are the ones they are representing. Even so, they aren't doing a good job meeting the needs of even those parents they represent. The needs of autistic adults dovetail with the needs of parents of autistic children at precisely age 22. That's the cut-off for Special Ed in the U.S. At that age, the parents of the former child are now parents of an autistic adult. That adult has needs that Autism Speaks is simply not addressing. Maybe the parent will meet those needs. But parents are inevitably older than their children, and sometimes also become unable to meet needs for reasons other than old age. The stressed out parents would be better served by organizations that address the absolute biggest stress: what will become of your child when you can't care for him/her anymore? Autism Speaks isn't helping with that.


Autism Speaks seems more concerned with the parents of younger children with autism, and how they can "cure" them so they won't be so difficult to raise. Maybe it's because that's who runs Autism Speaks, people with autistic kids < 16 years and you won't see them addressing the needs of parents with older autistic children until the people who run it kids grow into adults. Still, it's organizations focusing on young children that receive the most funding, so they may never shift their focus. Another organization might have to specifically address the needs of adults.



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27 Jun 2010, 5:13 pm

From what I have seen of one organisation who are there to address the needs of autistic adults, they are not much better. people with AS told me that one particular organisation ignored the adults with AS trying to contact them for help- the organisation was really set up for the parents of the AS adult, the focus being the financial stress of having an autistic adult still at home.


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27 Jun 2010, 9:21 pm

Mysty wrote:
What they present about your life? They've written about you personally, as an individual?

I'm pretty sure that's not what you mean. No, you are equating what they write about autism in child as somehow being about 51 year old you. It isn't, on two levels. There's the age thing. And there's the fact that autism is varied, and any generalizations are going to have autistic individuals that they don't fit.
I am writing about Autism Speaks not being close to the truth about how it was for me growing up, and about raising my own two AS kids. (I do remember my whole life including my toddler years. Earlier this year I had a long talk with my mother about why I acted the way I did as a toddler, what I was thinking then, and why I finally made the decision to finally start talking.)

Talking to others here on this forum, I find my experiences to be typical of an AS individual, and typical of an AS parent. I am not saying there are not differences between the behavior of children on the ASD spectrum, but the vast majority are nowhere near what is represented by Autism speaks as being normal.


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27 Jun 2010, 10:17 pm

From what I gather, it seems that Autism Speaks is trying to see to it we become "normal"; the unfortunate thing is many on here do "drink the Kool Aid" and want that life, but at the same time it's basically a group trying to do the exact same thing that standardized schooling aims for; and I'm in no favor of either...



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28 Jun 2010, 7:04 am

Callista wrote:
Autism Speaks is almost entirely bad. Even the PSAs paint autism as a horrible thing, something that we have to get rid of and squash out, something that breaks up families, turns children into unresponsive automatons, costs money, and ruins lives. They are overdramatic, and in the name of raising awareness they make people believe that a life with autism is hopeless, joyless, and a burden to everyone around you.

[snip]

PSAs are all well and good; but everybody knows about autism now. We don't need more awareness; we need more acceptance. Autism Speaks doesn't advocate acceptance. They paint us as people just sitting around being useless (or, at best, we're "heroic" just for living our lives), until some kind of magical cure can come along and turn us into standardized human beings.


A guy on Coast-to-Coast who has AS commented that was we need is more tolerance and acceptance. What makes having Autism/AS so horrible is that society does not find a place for the autistic person to contribute and interact in society...losing what they have to contribute in the process.

I think Autism Speaks believes they are doing a good thing, and whether a "cure" for Autism is a good thing or not is a different debate altogether, but indeed they do present the condition as something that needs to be fixed and not an issue of finding ways to meaningfully connect to those with Autism. After all, being able to "cure" the "negative" aspects of Autism would inherently change the Autistic person into what an NT wants them to be.