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aghogday
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19 May 2011, 4:30 pm

Verdandi wrote:
Er, have you seen their PR materials? Most people don't check their website.

I believe someone linked one of their videos earlier in the thread.


The "I am Autism Video was not produced for distribution in the mainstream media. It was produced for a one time event for an Autism conference, and received positive input from some at that conference. However some did not like it. I find it disturbing too. They listened to the complaints and removed the link from their website.

I also saw where one of their employees made an unfortunate statement about her inner demons and wanting to drive her children off a bridge. Big mistake there but it happened years ago.

Apparently that kind of stuff has been resolved and there is no further evidence that I see of that level of negative portrayal of Autism by Autism Speaks. Obviously it is not sugar coated on their website, but factually represented, and professionally done as far as I can see.

I see the old stuff rehashed over and over, but am afraid in doing that it is receiving alot of publicity that it wouldn't be getting today if it was just left in the past. Those videos happened years ago, and that level of negativity in the video awareness campaign seems to be resolved, at least, I have seen no further evidence of it. I'm sure if there was any, someone would bring it to our attention here. If they did, I missed it.



aghogday
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19 May 2011, 4:42 pm

Verdandi wrote:
Here are some examples from a few years ago:

http://autismcrisis.blogspot.com/2008/0 ... peaks.html

Anyway, as I said, they are improving.

Also, I believe the correct number is 110 in 10,000, rather than 1 in 110, or so the CDC said in 2009. That's 1 in 91.


http://www.cdc.gov/ncbddd/autism/index.html

Their latest statistics reflect what Autism Speaks has on their website.

You beat me to the punch on the historical nature of their video problems.

When I see the videos, it's obvious that they had problems, and have fixed them. That is to their credit; an important component of the issue. I think some people get the idea that they are still showing that kind of stuff, when it's not clarified it could also be seen as misleading for some and present a picture of the organization that is not a part of present day reality.



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19 May 2011, 5:00 pm

aghogday wrote:
Verdandi wrote:
Here are some examples from a few years ago:

http://autismcrisis.blogspot.com/2008/0 ... peaks.html

Anyway, as I said, they are improving.

Also, I believe the correct number is 110 in 10,000, rather than 1 in 110, or so the CDC said in 2009. That's 1 in 91.


http://www.cdc.gov/ncbddd/autism/index.html

Their latest statistics reflect what Autism Speaks has on their website.

You beat me to the punch on the historical nature of their video problems.

When I see the videos, it's obvious that they had problems, and have fixed them. That is to their credit; an important component of the issue. I think some people get the idea that they are still showing that kind of stuff, when it's not clarified it could also be seen as misleading for some and present a picture of the organization that is not a part of present day reality.


The actual study says 1 in 91, or 110 in 10,000. No idea why that page says 1 in 110. This is the actual study:

http://pediatrics.aappublications.org/c ... 5.abstract

I am skeptical as to whether all the problems have been fixed, but I do agree they have been fixing problems.



aghogday
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19 May 2011, 5:02 pm

wavefreak58 wrote:
aghogday wrote:
You got me curious about the 1 out of 110 statement on their website. The note that the prevalence of figures are growing. In their about Autism suggestion, they clearly define Autism as a group of five disorders, including Aspergers. Then they go on to state that 1 out of 110 people are diagnosed with Autism. They then go on to state that a possible rise in the figures in Autism are from a greater number of diagnoses than an actual increase in the "rate" of Autism. I'm looking for something misleading, but don't see it.


I would be surprised to see misleading information directly on their website. But I have seen loosely implied 'facts' in their commercials. These are their direct "Appeal to Emotion" media blurbs that are designed to maximize donations. They work. But they aren't very informative. I think this is at the crux of a great deal of the hostility. Autism Speaks willingly indulges in the same tactics that pervades the marketing of products. But autistics are not products and rightfully resent being treated as such. So there will be an inevitable backlash. I'm seeing a slow evolution in Autism Speaks. I can't see the dark conspiracies that some put forth. I do see some missteps. I see some adjustments. I believe that the right pressure from groups and individuals can help change their tone and even their research priorities. Maybe I'm naive, but time will tell.


Did you see the somewhat misleading commercials in the past, or are they still being broadcast. My understanding is the "I Am Autism" video was never broadcast anywhere but at a "World Focus on Autism Event", and on their website. I can vaguely remember some awareness issues in commercials on Autism on TV, but don't remember anything particularly misleading about them and didn't even know there was a such a thing as "Autism Speaks" until I came to this website.

I think for years people have associated Autism with the movie "Rainman" and understood how difficult the condition was from that movie. And on TV there is quite a bit of new awareness with Aspergers in the last few years, through movies and documentaries produced for TV.

I'm not even sure that Autism Speaks influences the general public as much as celebrities that have children with Autism and TV shows and movies. Does anyone even watch commercials anymore that have a DVR?

I would imagine that most people now get the details off of the internet or from a Doctor, but not necessarily from Autism Speaks. But for those that aren't personally touched by it, I think a movie, or a documentary might make more of an impression than commercials do these days.

Also, I would imagine that the people that are personally touched by it search out sources like Autism Speaks, and donate because of the connection to loved ones with Autism.



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19 May 2011, 5:08 pm

I'm going to stick my (personal) neck out and speculate a bit. And I apologize ahead of time for thinking out loud. It's one of my processing techniques, for bad or good....

If the latest Korean study, or the one in Massachusetts, are even close, there are a lot more autistics than 1 in 100. In the US, that would be about 3 million. If those studies are indicative, there are more like 6 - 9 million. Taking in to account even a conservative percentage of undiagnosed, unwitting Aspergers, like those who can work and raise families but are miserable or just confused as to what makes it so hard to succeed to the degrees their neighbors do, and we could realistically be talking about 10 million autistics in the US alone.

Original figures I remember - correct me if you have citations - put sever autistics at about 25 - 50 percent of the original estimations. That's in the 1.5 million range, I think. That would mean it's possible that there are about 8 million autistics in the US who are reachable, treatable, educable, and able to make use of whatever help we can provide to excel and contribute. 

If we look at it another way, and assume we can put all autistics on a bell curve according to severity, a couple thoughts occur. First, is there a fairly large number of severe autistics Who are far enough along toward the right side of the curve to warrant reexamining their communication options and try harder to get them keyboards, picture-based systems, and whatever we can find to help them communicate better? I am not confident that, once you've been seen as non-verbal or intellectually disabled, anyone is revisiting your situation on a regular basis to see if new technology or techniques or your natural development have changed things.

Second, assuming that the number of autistics on the right side - who need virtually no help or services - roughly matches the group of severe autistics on the left who we just can't reach, given current technique, then the vast majority of autistics are people who really need us to stop bickering about who has how much and what kind of autism. The vast majority need us to find them, communicate with them, educate them, treat their co-morbidities, help them find productive employment, and find them a dignified, safe, supported place to live.

I'll be the first to admit that I've never left a math teacher un-dismayed. But even I can see that, once you stop trying to shove autistics into categories like HFA vs LFA or autistic vs aspie or verbal vs non-verbal or mild vs severe, you end up with Those We Can't Help or Don't Need It vs The Rest. And The Rest is a huge chunk of millions of autistics - the majority of autistics. And it's a group that rivals, in size, many other ethnic, religious, political and disabled minority groups - none of which would tolerate the kind of treatment autistics get everyday.

Autistic numbers are roughly similar to those for the vision-impaired and hard-of-hearing. I think it would fly like a lead balloon if we decided that large print books were an undeserved waste of resources because they weren't going to REAL blind people. Or if we only allowed REALLY deaf people to turn on closed captioning on their television sets.

I see all these qualifiers, adjectives and medical labels as a major roadblock to the civil rights of all autistics. And useless as well. They don't help us in any real way I can see. They may determine how much Medicaid you get, or what programs you qualify for, but they also lock you out of services you might need and insurance reimbursements you need. Labels don't help you grow and develop. They are simply convenient for your handlers.

Doesn't sound like patient centered medicine to me.

When it comes to finding our place in the world as fully participating citizens despite being a minority, we need to drop the medical labels and the adjectives of convenience and simply find help for those who need it, a voice (any voice) for those who want to speak, and stop trying to sort people into boxes that do them very little good.

Look. An autistic is someone whose brain and nervous system works in different and unpredictable ways. Is it really important to group them into arbitrary categories based on how they appear to us? At best our diagnostic tools only list the results of the effects of the interactions of the differences we think are there. So much for medical labels. How about we simply acknowledge what we're pretty sure about: autistics have challenging nervous systems. There are a wide variety of issues they may have to contend with, and they may need help - lots or little - in order to get past the challenges and lead a satisfying life that can enrich those around them. And it is always - always - a bad idea to slap a tag on them and throw them away.


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aghogday
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19 May 2011, 5:18 pm

Verdandi wrote:
aghogday wrote:
Verdandi wrote:
Here are some examples from a few years ago:

http://autismcrisis.blogspot.com/2008/0 ... peaks.html

Anyway, as I said, they are improving.

Also, I believe the correct number is 110 in 10,000, rather than 1 in 110, or so the CDC said in 2009. That's 1 in 91.


http://www.cdc.gov/ncbddd/autism/index.html

Their latest statistics reflect what Autism Speaks has on their website.

You beat me to the punch on the historical nature of their video problems.

When I see the videos, it's obvious that they had problems, and have fixed them. That is to their credit; an important component of the issue. I think some people get the idea that they are still showing that kind of stuff, when it's not clarified it could also be seen as misleading for some and present a picture of the organization that is not a part of present day reality.


The actual study says 1 in 91, or 110 in 10,000. No idea why that page says 1 in 110. This is the actual study:

http://pediatrics.aappublications.org/c ... 5.abstract

I am skeptical as to whether all the problems have been fixed, but I do agree they have been fixing problems.


The CDC uses a different source for their statistics: "Autism and Developmental Disabilities Monitoring (ADDM) Network"

Many different sources suggest many different results, that was part of my point in why they don't get down into details on different statistics for individual disorders in Autism. They uses CDC statistics because the CDC is the government's official source for the statistics.

To clarify here the CDC was involved in a joint effort in the study you presented from the Journal of American Pediatrics, however the CDC considers the other study more reliable and is using the estimate of 1 in 110, instead. I was confused by that, sorry. Here is a link that explains it better than I can.

http://www.disabilityscoop.com/2009/12/18/autism-1-percent/6532/

Oops I didn't see your first source regarding the criticism that Autism Speaks number of 1.5 million was off. That number also came from the CDC and Autism Speaks referenced the CDC as the source in the information yet Autism Speaks got the criticism for the numbers in the article, not the CDC. The 1.5 million was an estimate from the CDC, derived from the "Autism and Developmental Disabilities Monitoring (ADDM) Network"



aghogday
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19 May 2011, 6:35 pm

gitchel wrote:
I'm going to stick my (personal) neck out and speculate a bit. And I apologize ahead of time for thinking out loud. It's one of my processing techniques, for bad or good....

If the latest Korean study, or the one in Massachusetts, are even close, there are a lot more autistics than 1 in 100. In the US, that would be about 3 million. If those studies are indicative, there are more like 6 - 9 million. Taking in to account even a conservative percentage of undiagnosed, unwitting Aspergers, like those who can work and raise families but are miserable or just confused as to what makes it so hard to succeed to the degrees their neighbors do, and we could realistically be talking about 10 million autistics in the US alone.

Original figures I remember - correct me if you have citations - put sever autistics at about 25 - 50 percent of the original estimations. That's in the 1.5 million range, I think. That would mean it's possible that there are about 8 million autistics in the US who are reachable, treatable, educable, and able to make use of whatever help we can provide to excel and contribute. 

If we look at it another way, and assume we can put all autistics on a bell curve according to severity, a couple thoughts occur. First, is there a fairly large number of severe autistics Who are far enough along toward the right side of the curve to warrant reexamining their communication options and try harder to get them keyboards, picture-based systems, and whatever we can find to help them communicate better? I am not confident that, once you've been seen as non-verbal or intellectually disabled, anyone is revisiting your situation on a regular basis to see if new technology or techniques or your natural development have changed things.

Second, assuming that the number of autistics on the right side - who need virtually no help or services - roughly matches the group of severe autistics on the left who we just can't reach, given current technique, then the vast majority of autistics are people who really need us to stop bickering about who has how much and what kind of autism. The vast majority need us to find them, communicate with them, educate them, treat their co-morbidities, help them find productive employment, and find them a dignified, safe, supported place to live.

I'll be the first to admit that I've never left a math teacher un-dismayed. But even I can see that, once you stop trying to shove autistics into categories like HFA vs LFA or autistic vs aspie or verbal vs non-verbal or mild vs severe, you end up with Those We Can't Help or Don't Need It vs The Rest. And The Rest is a huge chunk of millions of autistics - the majority of autistics. And it's a group that rivals, in size, many other ethnic, religious, political and disabled minority groups - none of which would tolerate the kind of treatment autistics get everyday.

Autistic numbers are roughly similar to those for the vision-impaired and hard-of-hearing. I think it would fly like a lead balloon if we decided that large print books were an undeserved waste of resources because they weren't going to REAL blind people. Or if we only allowed REALLY deaf people to turn on closed captioning on their television sets.

I see all these qualifiers, adjectives and medical labels as a major roadblock to the civil rights of all autistics. And useless as well. They don't help us in any real way I can see. They may determine how much Medicaid you get, or what programs you qualify for, but they also lock you out of services you might need and insurance reimbursements you need. Labels don't help you grow and develop. They are simply convenient for your handlers.

Doesn't sound like patient centered medicine to me.

When it comes to finding our place in the world as fully participating citizens despite being a minority, we need to drop the medical labels and the adjectives of convenience and simply find help for those who need it, a voice (any voice) for those who want to speak, and stop trying to sort people into boxes that do them very little good.

Look. An autistic is someone whose brain and nervous system works in different and unpredictable ways. Is it really important to group them into arbitrary categories based on how they appear to us? At best our diagnostic tools only list the results of the effects of the interactions of the differences we think are there. So much for medical labels. How about we simply acknowledge what we're pretty sure about: autistics have challenging nervous systems. There are a wide variety of issues they may have to contend with, and they may need help - lots or little - in order to get past the challenges and lead a satisfying life that can enrich those around them. And it is always - always - a bad idea to slap a tag on them and throw them away.


I would have never got a diagnosis, if I had not had obvious markers like a speech delay and sensory integration problems. And it took me until age 47 to get one, because my issues became more severe with age. Your estimates wouldn't surprise me a bit. A diagnosis is contigent, for many people an awareness, and the means to get a diagnosis. For every person that has a diagnosis I wouldn't be suprised if there were 2 or three that don't, particularly in the case of Aspergers, because it is often missed in early childhood.

The South Korean study screened everyone, so it is not surprising at all to me that more children were diagnosed.

I had this discussion earlier in the thread, on how I would imagine many people that are having trouble finding employment because of various reasons associated with Autism, may not currently have either the awareness or the means for a diagnosis. Perhaps that will change for some if Healthcare reform stays intact.

The diagnosis can help some in gaining workplace accommodations that they wouldn't normally get if it wasn't for the American's with Disbilities Act. That is the only thing that is keeping some people in a job at this point. There may be a better way to do it in the future, but it is what is available now to help people that need those accommodations.

I thinking the DSMV will possibly help a wider range of people get help than they do now, because everyone has the same diagnosis, but I guess it remains to be seen how that will play out. Some kind of criteria for severity will be necessary to get people the help they need, but the new severity levels seem to be more specific in listing support aids that are necessary. That seems aimed more at problem solving than the current approach, in my opinion.