Curious: What exactly do we hate about Autism Speaks?

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Thanks for pointing out my mistake on VermontSavants name. I've known him for months, it is a typo, I've made before, not a misreading of his name.

No I was not marrying up concepts of severe disorders with classic autism, if you had taken the time to read my post on the definition of Kanners type autism/classic autism, mental retardation was once though to be part of that condition, now it is considered a co-morbid with Autism Disorder. This is a technical fact, I presented that you felt was too long to read.

VermontSavant didn't say anything about me marrying up severe disorders with autism. He said I was describing childhood disintegrative disorder, he provided his definition, which I responded to with the definitions from Wiki, that you said were too long to read.

Childhood Disintegrative disorder, Regressive Autism, as well as Classic/Kanner's are all considered descriptions of severe autism spectrum disorders, from a clinical standpoint.

As I specifically stated I described regressive autism as a condition where children lost words at a very young age. I didn't even use the terms classic autism or Kanner's syndrome, until I provided the definitions that you felt were too long to read.

I'm not sure how I could take your comment 'regressive' autism too literally, where does it exist other that your post here? You referred to "degenerative autism". This is the first time in the record that you have used the term 'regressive' autism that I am aware of.

Don't know if you remember, but I have made that typo before on your Vermont Savant user name, completely unintentionally.

No, I did not think you were rude at all. I figured it was a misunderstanding that could be easily clarified.

Which demonstrates my point exactly

I didn't say that you were marrying up severe disorders. I said you were marrying up concepts of severe disorders wrongly, which is what vermontsavant said when you seemed to describe examples of one condition that he said were part of another condition

Sorry but it does not make sense to me to suggest that I took a statement that you did not make literally.

You said you made the comment 'regressive' autism and I took it too literally. Sorry, but there is no evidence in the record that you made the comment 'regressive' autism that I responded literally to. If I am mistaken, you are welcome to provide evidence that you actually made that statement.

If you meant regressive autism when you stated Degenerative Autism after VermontSavant described his definition of Childhood Disintegrative Disorder, you are welcome to make that clarification, but I can't read your mind, until you provide that clarification.

Regressive Autism and Childhood Disintegrative Disorder are two different disorders.

If you still haven't read the definitions I provided of these disorders, you may still not completely understand this fact. In that case we may be looking at this from different contexts.

It might help if you take the time to read the descriptions of the different disorders, I provided from Wiki, to understand the differences, before you decide I am marrying up concepts of severe disorders.

You said I married up concepts of severe disorders wrongly. I did not present any incorrect information regarding regressive autism, as clarified by the definitions by Wiki that you said were to long to read.

The only misunderstanding VermontSavant had was that he didn't realize that children at the age of 15 to 30 months had the ability to speak, he's already qualified that in his last response to me.

His statement had nothing to do me with marrying up concepts of severe disorders wrongly, or anything about marrying them up period. Perhaps you read it that way, but I didn't, and his response qualifies what he meant by his statement and also qualifies that my description was correct.

@aghogday,glad i wasnt rude.@marcus t,what happened between me and aghogday concerning CDD was a misunderstanding.i did not realize he meant loss of speech before 15 months of age,i though he meant like 6 years old which would be CDD.I didnt know kids could even talk at 13 months,wouldnt know never had kids

Look at my statement that you quoted, if you will, that I bolded above, I said portrayed all autism as severe and you repeat again that people were portraying it as such.

Here is your original quote that I responded to:



You state here that certain people instantly portray all autism as severe, I responded above with "there is no place in the record here on this forum that I have seen where anyone has portrayed all Autism as Severe". I didn't misrepresent anything you said, I responded directly to what you said in the quote above.

As I said it doesn't exist in the record anywhere here that I am aware of. Perhaps you think you saw it somewhere, but I invite you to provide evidence per quote, if anyone actually portrayed all autism as Severe on this internet site.

I was providing examples of extremes of non-severity and severity on the autism spectrum, in response to your statement about people homing in on the extremes of autism. I didn't imply anything other than the fact that these individuals do exist.

Most everyone here knows that there are individuals on the spectrum that function quite well, this is why I am confident that no one has portrayed all autism as severe on this internet site, and doubt very seriously that you could provide any quotes of anyone portraying all autism as severe on this site.

On the other hand you would be able to come across generalized statements that portray autism as a condition that is not severe, or even some that state that it is a condition superior to all human conditions. There are whole threads that focus on those opinions.

I research facts and defend facts, I don't have any personal attachments to any autism organizations.

No problem. Just to clarify again it is loss of words gained between 15 months and 30 months per the Wiki article. The CDC reports it as 12 to 24 months, so there is some variation between sources.

http://yourlife.usatoday.com/health/medical/autism/story/2011/04/Research-Autism-treatments-fall-short/45725852/1

Here is the answer provided from the federal Agency for Healthcare Research and Quality that commisioned scientists to examine available research on that specific question.

Some of Kanner's patients didn't have delayed speech, although they did have other speech irregularities.

The criteria for autism in the DSM-IV does not require absent or delayed speech.

Hello All,

First, let me say now I can see why NTs define us as pedantic. Some of these posts are so rambling even I get bored reading them despite the fact that I am an Aspie and have a personal interest and investment in this subject.

Next, the discussion in large part seems to be huge gripe session, which while very articulate, doesn't seem to lead to any form of action. I see lots of focus on what constitutes a diagnosis but nothing on why Autism Speaks is "hated". As for Kanner's, I have no interest in that particular form of autism as I cannot comprehend living this life with mental retardation heaped on it. There is nothing I can do, and they can't be "cured" of a genetic anomaly that causes mental retardation so what can say about that?

Finally, what is the logical purpose of the discussion. Autism Speaks' perspective in many instances is contrary to our best interests. Fine. They suck. So what if anything are we going to do about it? If this is a giant complaint board, thats OK. I just think this forum needs to be clear about what it is.

kanners autism has nothing to do with mental retardation.the vollume on the senses is turned all the more higher usualy resulting in speech problems.the more severe forms of autism are farther away from mental retardation where the vollume is turned down way too low.but i agree about getting back on topic,so lets get back on topic everyone

Part of the problem with the perception of autism speaks, is expectations exist for the organization that do not exist according to the mission statement of the organization.

Som people hate the fact that the organization does research instead of providing direct aid to autistic people, however that is not autism speaks mission, other organizations, mostly the government, provide this type of direct aid/assistance.

The organization has 340K volunteers that support the organization's mission for research, as well as the US government that funds millions of research dollars into autism. The scientific community understands research into autism as vital, and a valid area of study as well.

Autism is associated co-morbid with genetic conditions that cause mental retardation.

However, recent research provides evidence that when non-verbal measures of intelligence are used many Autistic individuals considered scoring less that normal on traditional IQ tests score significantly higher, when these non-verbal measures of intelligence are used.

So, the question becomes, is the intelligence quotient measured by the government, in the current 1 in 110 statistic, as on average 41% below an IQ level of 70, accurate due to the type of measures of intelligence that have traditionally been used?

Is a lower IQ measured on traditional tests a result of language deficiencies or other related symptoms of autism? It is not fully understood at this point, research continues in this area. Interventions developed specific to meet the needs of these autistic individuals is one aim of autism research.

There are all kind of reasons that people hate Autism Speaks, ranging from censorship accusations, pay for employees that is too high, negative portrayal of autism, some of which are misconceptions, because all the available facts are not presented in a discussion of these issues.

The bottom line though, for the majority of these individuals that don't agree with the actual mission of the organization; a mission that focuses on research, with little focus on Aspergers.

That part is not likely going to change in the foreseeable future, and from an objective standpoint, no one is going to be able to change it through rhetoric, because the government, science, and the general public for the most part understand research as both a vital, and valid endeavor.

Autism Speaks has never focused on curing Aspergers, hardly any of their research is aimed toward Aspergers Syndrome. The organization makes that no secret on their website, their focus is on families of autistic children severely disabled, like the founders grandson who had regressive autism.

Some are concerned that autism speaks want to cure them of their Aspergers. All one has to do is look at the research they do, there is no objective concern, because there is no significant research aimed at that goal.

A few adult autistics recently have iniated input into the Autism Speaks organization. That's only a good thing, because if nothing else those individuals are improving their personal lives as a result of that interaction.

The answer seems fairly easy. For those autistic adults that want to get involved with Autism Speaks there is a clear avenue to do that. That avenue has been provided here on this internet site through dialogue for improvement in the organization, however, most are not interested.

For those that are not interested, there is absolutley no objective reason I can see to be concerned that the autism speaks organization exists.

The organization is rated highly by watchdog groups in the US; there are other autism organizations including autism research organizations that do not rate nearly as high, if one wants to take the effort to bring this information out into the open.

As reported by the guidestar.org watchdog group for charitable organizations there are well over 2900 in the US associated with Autism, some of which need both volunteers and financial aid.

Some of these organizations main focus is on Aspegers such as the Aspergers Association of New England. Many of these organizations are doing great things in direct support of autistic individuals. If people want to get involved to advocate for autistic people through these organizations, that avenue is certainly open throughout the US.

Autism Speaks is an extremely visible organization, because of their high powered PR effort. However, in reality they are a very small part of the entire effort to support autistic people in the entire country.

Most of the discussions on that organization on this site, just provide greater awareness that Autism Speaks exists, among the thousands of individuals that review this website, and see the words "Autism Speaks" identified in threads.

If the discussions instead, where about the positive things that some of those other 2900 organizations were doing, and how people that wanted to help were getting involved, those organization would gain greater awareness from the people interested in helping people with autism that view this internet site.

So far about 90 percent of the attention has been focused on 1 out of 2900 organizatios, autism speaks, mostly because they got people to notice them, along with much of the rest of the general public, in a big way, through their PR efforts, that other organization can't come close to matching in intensity or volume.

Why is that?

It probably has a great deal to do with the PR expertise, and influence of the founders. The founder was vice president of GE, president of NBC, and started the MSNBC, and CNBC networks. Having knowledge, influence, and access to every imaginable area of PR in the US, including 25 million dollars of funding from an influential friend.

That is a unique advantage, which was almost a guarantee of sucess and also almost a guarantee of success in the future, that no other autism organization I know of has.

It is the other 2900 organizations that could really use some PR help here on world planet to get exposed to those thousands of individuals that view this website daily, that have an interest in what this autism thing is and what they can do to get involved and help.

Until I got the guidestar.org resource I had no idea that there was an organization less than 30 miles from my home, that raises 4 million dollars a year to provide direct aid to autistic individuals.

This is the organization I would get involved in, if I wanted to help autistic individuals in my local area, it wouldn't be autism speaks, simply because that organization has all the advantages that a charitable organization could possibly have to stay strong with almost guaranteed success in the future.

If someone doesn't like autism speaks, and wants to support another organization here on this website; in fact if they hate autism speaks and want to see it vanish:

The worst thing they could do is to continue the conversation on autism speaks continuing to provide free advertisement to the thousands of people that view this site every day. These folks viewing from a distance are going to easily be able to see that every autism speaks thread is truly for the most part a gripe session, on any self advocacy site.

What these folks viewing from a distance are likely going to gain from the threads is exposure to the name "Autism Speaks", in the title of the topic, further curiosity about Autism Speaks and a quick google search, to make there own informed decisions.

Once they see the watchdog groups highly rated reports on the organization, they may even become a financial supporter, because the organization is seen as a trusted, highly respected organization by these objective sources.

The best thing they could do, these individuals that despise autism speaks, is drum up support here on this website for one of the other 2900 non-profit organizations that do great things in direct support for autistic people, perhaps related how they may be involved in the organization, in helping other autistic people.

I doubt it will ever happen though. For example, ASAN is a popular organization here, but it's not an organization designed for fundraising. And, the only time it's really discussed, is when it's in context to autism speaks, other than a few informational postings here.

There was an individual here for almost a year that provided more advertisement and awareness for ASAN, because he disliked that organization, than it has probably got in the entire time Wrong Planet has been in existence.

So the real bottom line is, I guess, a sociological phenomenon where people enjoy the emotion stirring of hatred against a common enemy, if one can be found, more than the actual harm or good done to that common enemy.

Autism Speaks PR machine has unwittingly put themselves, in effect, in a prized position here, among those that have selected the organization as a common enemy.

I read somewhere where about 15,000 people everyday view the world planet website. That's alot of free advertisement for autism speaks, if two or three threads are going, with the name "autism speaks" in them.

Out of potentially close to a million viewers on this site, it's likely Autism Speaks gains a few thousand more financial supporters each year, from the ongoing discussion of autism speaks, simply because of greater awareness that the organization exists.

Objectively speaking Autism Speaks seems to be the biggest winner out of these threads, with absolutley no effort from the organization, except for trying to be polite when asked questions, about why people hate the organization.

It doesn't matter what the title of a thread about autism speaks is, the same arguments will be discussed over and over. Not much difference than a conversation about religion, general politics, or football. It's just human nature, I think, and yes the end result, usually a gripe session.

Now with all the Professional Pea and Shell games, the ever changing meaning of Autism, it should still be able to define by what conditions the children who were helped by Behavioral Therapy had.

My use of Autism covers Kanner to Broader Autism Phenotype. What helps some children could possibly help some Geeks.

Yes we are into animal training, what varies are methods, and my background is horses and large dogs. Furthermore, dealing with large animals that have had bad experiences with humans, and said so, by becoming blood horses that try to kill riders. Mostly they try to make it look like an accident, but being crushed in stalls is premedited murder.

Behavioral Modification does work, I am still alive.

I relate well to other species, we have an overlap of awareness, we connect. Mostly it was an early trama, being trained by force, where bad feelings lingered, till they were much larger. Some horses were saddle broke by bronc buster methods, and never carried anyone willingly.

The other method takes longer, it is teamwork, the human can do things the horse cannot, open gates, go places, find food, care for a horse. Horses find me intelligent, helpful, friendly, trustworthy.

After getting to know them I mounted bareback without a bridle. I was easy to buck off. I did not change, a few days later I did it again, After a while I was tolerated. It was not the rider, it was the use of bits, reins, spurs, taking command, that was resented.

There were trails where the horse had been ridden. I took off their halter, opened the back gate, and took them for walks. It was woods, where tigers could lurk, they stayed very close, walking nose to cheek with me. We stopped and explored some places.

Like an autistic dealing with too many things at once, they had been ridden in a strange place. it was new and scarey, and there was the rider with bit, reins, spurs, whip, making it stranger. Together we explored the woods, for miles.

Horses do not walk well, some steep sections they run better, some roots and holes they hop, and I ran ahead, giving them the room they needed to move as they do. Our feet were the same size, but they put ten times the weight on the same space. Our walks became jogs,

I am slow of foot, so the only way we could move together was with me riding, bareback, and great care was taken that I did not fall off.

Later I used a saddle, no bridle, showing how a human stays on better with a saddle. He became a great saddle horse, having learned everything one step at a time. He became intentionally smooth gaited, the rider floated.

The little girl that lived next door asked me if she could ever ride him like I did. She was small, he was a big horse. She picked grass and fed him, he knew she loved him, he was fond of her, and hearing this, he neighed.

I told her she would have to ask him, because I rode by his permission.

She went to his pasture gate as she did every day after school, picked some grass and he came and took it. She asked if he would carry her, and putting his nose to her cheek he blew in her ear, turned till he was lined up with the gate, which she climbed and onto his back. He took her around the pasture at a walk, got her well seated, then danced around the pasture, head high, mane waving, hoofs prancing, and gave her a fantastic ride she will remember forever, then deposited her back at the gate.

This horse, which had put several people in the hospital, was now picking and training riders. He took the lead when riding, and was a great saddle horse.

Behavior Modification has two sides.

I see discussions about regressive Autism and also ABA, so thought I would chip in with my first hand experience of these things.

My child has what I would call regressive Autism. At age 2.5 he had about 30 words that he used. He also could observe and imitate and point. Those skills faded away progressively from there and at 5 he no longer does those things. He is intellectually disabled/mentally ret*d I guess. His functional level for his age on a Vineland II done about a year ago put him off the bottom of the Bell curve below 0.1%.

We have done/do behavioral modification/intervention..call it what you like, we call it ABA but I know that's not right either. To my son I decided to start calling it 'homework' and that stuck. We started doing it ourselves with guidance and realising it worked but would kill us to continue, decided to pay for others to do it. He gets about 15 hrs a week at the moment and has done more. The most important thing he has learnt through this type of training is PECS. But plenty of other things..e.g. to me it is just amazing to be able to point to something he dropped on the floor and ask him to pick it up, or ask him to open a cupboard and bring me a bowl, or shout stop when I see him heading towards the road and have him stop. The foundation skills to be able to do tasks like that such as joint attention, following a distal point, receptive labelling etc etc etc ad infinitum were learnt through his programme which costs about $30,000 a year. It sounds a lot of money, and it is, but theres no magic in that, or exhorbitant rates it's just due to the amount of time you have someone working with the child for.
There's no aversives used these days, and most of what he does is not that table top stuff you might have seen.

Have a look at the body of research; when done properly a behavioural modification programme AKA ABA seems to be the best way that is currently available for teaching things to lower functioning individuals.

Thanks for the personal insight. The link I provided to Inventor is actually a description of a recent government sponsored study into the body of research that is available on ABA.

The results of that study shows it to be effective in a subgroup of children ages 2 to 12 with autism disorder. It's great that your son is among those individuals, and per the research by the government, it is the only current treatment proven as effective, so at least from the perspective of that research, it appears you have chosen the best available option.

Thanks for the update, ABA is thrown around, without defining what is being done. I would say your son is smarter than any horse, their peak development is about equal to a three year old. They do speak, but in horse, and they do learn the meaning of our words.

The main thing I went for was overlap, our common world, and once that was established I had a willing partner. PECS would not work with horses, they would chew on it.

Horses do say I want, I have a problem, and have a social need. My actions spoke, I went out at night and walked the bounds of the pasture, stood with the horses, During the day I looked for bits of wire, and dug out rocks, filled and packed the hole, Due to the construction of their foot, stepping on a rock spreads the hoof, and bruises the frog. It also twists the ankle. They used narrow trails across hills, which gave a sound footing, but also exposed rocks.

Me clearing the rocks and packing the trails with clean dirt, had a great response, like clearing big rocks off off the highway and filling potholes. I was inside their world, doing horse important things. I cleaned and trimmed hoves, which they liked. Having a bruised foot is no fun when you weigh 1400 pounds.

Seeking common ground, becoming useful in their world, being seen as intelligent, was my whole program. After that doing one thing at a time, till they were comfortable with it all, lead to horse human teamwork.

Horses do not need to learn this, it is humans we send to riding school.

The only blood horse I ever met that was not caused by humans, had stepped on a nail. I was doing my, I am useful, introduction, letting him see and smell my hoof pick, knife, and rasp. It was an offer not an order. He lifted a hoof, I cleaned, and found a dark spot, digging deeper a solid object, and after going for pliers, digging till I hit blood, I got a grip, told him it was going to hurt, and pulled an inch and a half nail.

He looked at it, smelled it, touched the sharp point with his nose, and we drove it into the top of a fence post. I rubbed his foot, talked to his people, who also rubbed his foot, looked at the nail, and soon there was no more problem.

Finding common ground, working within it, is all we can do.

Justin Wilson told a story about a family that lived along the bayou who had a son who never spoke. They loved him and did thier best, till he was eight, but one morning at breakfast, he said, "This toast is burnt like the devil!" Son, his father said, you spoke, why have you never spoken before? The son replied, "Up till now everything was OK."

Your autistic child is yours first, a child second, and autism a distant third. Stick with the first two, and the third will take care of it's self.