Stop Bashing Autism Speaks!

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Do you really think autism is as genetically simple and easily identified as down syndrome? Have you seen the diversity of the spectrum? There is a little autism scattered throughout the entire human population.

Perhaps I have 46 genes that account for my autism. Maybe my father has 20 of them, but flies under the radar. Maybe my sister has ten. If a prenatal test were available, would my whole family have been aborted?

This is, of course, an oversimplification, but that is because the science behind autism is incredibly complex. It won't be eliminated, at least not any time soon.

That's great that they hired you to do that. It's another thing people have been asking for online, to get more voices of autistics on the payroll of autism speaks.

A consistent concern I have heard is why ending the autism epidemic is still listed by Dana Marnane's bio on the website, since she stated in the interview that their goal is not to get rid of autism, but to eliminate the co-occuring medical conditions associated with it.

I don't think the statement is intended as one to suggest that the organization wants to eliminate all autistics, but it seems that some people read that into the statement.

Don't know if you can find the answer to that from her, but at least on this site, it would be good to have a clarification, I think, or potentially a change in the wording of the quote.

Other than that do you know if they aim to provide a greater percentage of their funding to support services of the future, or if it is a consideration within the organization? It's a continous question that wasn't addressed specifically in the interview.

Good luck, examples that provide awareness of life with higher functioning autism, is a great component to add to the organization. Hopefully they will hire others as well to provide a variety of input. If they can find individuals that require communication devices, it would be interesting also if they provided their stories of their life with autism as well.

It also would be good I think, for them to highlight the changes they are making on their website, although they seem for the most part to provide a great deal of information there on what they do.

And finally it would be interesting if at some point you could detail the changes they are making, here, for people's information.

It seems like an excellent opportunity to keep new ideas coming in to continue the dialogue.

ahogday wrote:

Yes I think that this is very important, I would really appreciate a clarification on this issue. I don't believe that she wants to eliminate all autistic people. But you can't end an "Autism epidemic" by just treating co-morbid symptoms. The use of the phrase "ending the Autism epidemic" suggests that she thinks that Autism is a disease, I would appreciate it if she would clarify that this is not the case.

I'm probably missing something really obvious here, but I'll comment anyway...
So genetic research into Autism should all stop, because a cause for it might be found?
If it's the case that the results of research may end up being used in unintended ways then why research anything at all - wouldn't we just be better off living in caves and slinging poo at each other?

In response to how complex the causes are for autism, I used this in another thread, and got it from someone else, but it gives a relatively easy example to understand the complexity of the genetics behind autism:

http://biologyfiles.fieldofscience.com/2011/10/copy-number-variation-and-autism-hotter.html

One definitive cause for autism, looks to be out of reach, but just recently in other research a potential genetic relationship was found between bowel problems in children with regressive autism, so the value of genetic research is important, in determining many valuable findings, that may make the life of an autistic person better in the future.

Unfortunately, there is a great divide here. On one side are NTs/parents who want to find a cure to fix all Autistic people. On the other side are Austic people who are fine being the way they are and don't feel broken at all.

But even that is not so simple, or black & white. Because the Autism spectrum is so broad, and encompasses people from the barely functioning, to people who are successful as business and community leaders. I applaud the effort to look for a genetic cure, but realize that is a long way in the future. But I also don't want to see good intentioned people become so focused on a "cure" that they forget to work on ways in which to help people out right now. I would like to see more emphasis on helping people become better functioning people and living better lives. I know that I could use some help in a few areas.

Also, as far as that Rainman thing, isn't it about time to just just get over it? It's fiction. It's entertainment. I actually liked it because I could identify with Rainman. Instead of being negative about it, use it as a starting point to discuss Autism with people who bring the movie up. I think in many ways it's up to us to educate the NTs about how it really is to be Autistic, because they can't experience/live it, so they will never know.

There are a lot of people within this organization who are very kind and open to suggestion.

If you guys put together a list of words and phrases that you would like to see Autism Speaks remove from their future vocabulary, it would be no problem for me to direct their attention here.

I saw a lot of progress at the hackathon in San Francisco. It is pretty hard to villify these people when you sit down with them and listen to the stories of how autism has effected them. Many of them have direct family members on the spectrum.

We fear what we do not understand. As we understand autism more, we fear it less. With understanding comes acceptance and cooperation.

[youtube]http://www.youtube.com/watch?v=ff_bL-2koP8[/youtube]

I have long been a supporter of Autism Speaks here. I like Genetic Research, their papers are readable, and a lot better than the general run.

We have gone long past the point of a Genetic Test and abortion, that was proven impossible in the early days.

The Genetic focus on autism is narrow for the work that is current, it is showing patterns in the Human Genome that have a broader meaning than just autism. Autistics do not have all the gut problems. Learning about those genetics is important. Transcranial magnetic induction has a long history in science fiction, and it is about time to give it the study it deserves. Science thought it something thought up by wacko writers, till they got a grant. I like exploring the possible.

Rainman was just a movie, not bad, it was more about savants.

Epidemics are contagious, They spread to everyone who comes in contact.

Curing an epidemic is reasonable, if there is one.

It may be good Marketing, it is bad Public Relations.

Awareness, how to spot the diseased, is also bad Public Relations.

At one in a hundred, three million, we have likely been around since the Mesolithic. World population 9,000, autistic 90. The new tools of the time show a real break with the past. They made an edge on a rock, Mesolithic chipped the whole surface, and made an ideal tool. Someone with a Special Interest in working flint.

Comparing us to the Black Death, the 1918 Flu, it is harder to interact with others.

Curing a people who have been around 40,000 years, seems like ethnic cleansing, genocide, and the public that the message is directed to have been known to hunt and kill the original inhabitants, lynch people because of skin color, and do not respond in an understanding and scientific manner, they have been known to stop epidemics by killing the infected.

We do not all live in the same world. In the small town in the rural south I grew up in they applied their intelligence and education, and declared I was Possesed by Demons. Someone gave them words, it is all they had.

If I had grown up in enlightened New York, I would have been treated like the other autistic children. Injected with large doses of LSD, and given electroconvulsive shock. It was a program run by Doctors, some of the best, and funded by the CIA. The Oldspeak Journal had an interesting online article about it, and there is a recent book out.

Children were treated till they quit responding, some lasted six weeks. Then they were shipped to institutions for the vegative.

Most seemed wards of the state, there was no consent, they were as young as four. It was considered worth it for the good of Science.

I think we should question, when someone starts saying we are diseased, an epidemic, like the film, "Lives Not worth Living."

It has a history, they were all seeking a cure. Today electroshock is being used on wards of the State in New York, for behavior modification. The Judge's Center for Electroshock.

The Department of Defense is funding autism research. I am sure they are just trying to help people.

We are not making up history, from being burned at the stake, chained to a wall in Bedlam, Gassed, experiment on with electroshock, LSD, Ice Water baths, Thorizine, locked up for life without trial, we have been there and done that, or had it done to us.

We have also suffered minor descrimination. Police claim we are on dope, we get attacked by strangers, and our own families. The list of murdered autistic children is long. No one would listen to our side of the story. Some people have gotten as much as a year in jail for killing us. Most got probation, or it was never brought to court.

So I do have a problem with that Autism Disease Epidemic, and doing anything for a Cure.

Science says those are not the right words. Ethics say no programs without consent, for an organization based on science, research, the brightest and best, the current Marketing does not live up to community standards.

We are three million, each different, a person, with a life. Autism Speaks has never recognised our humanity, still does not, and has spent a lot of money to put the same label on all of us, and broadcast that to the general population.

Awareness does not help us. The first rule is do no harm.

We have benefitted from what has been disproven. Vaccines, Metals, Genetic Defect, Mothers, Not directly, but knowledge is good.

I do not see any of us benefiting from more research, a few with gut problems, which most do not have, but it will benefit the non autistic who do have the same. Being non invasive I have no problem with genetic research.

My whole problem is in all of us being type cast by Marketing.

A second problem is seeking to treat children without first looking at adult outcomes. They will grow up to become us. NT Robot is not the best start in life. There was denial that adult autistics even existed, it was strictly children. That is not true. We did blend in, got by, long before any of you were born.

Tambourine-Man Wrote:

I don't doubt their good intentions, and I certainly don't see them as villans.

It is not so much the wording of phrases such as "Autism epidemic" that bothers me, it's more what the use of the phrase implies. If many members of Autism Speaks believe that Autism is a disease, then this will have negative consequences. They will waste more money on curing a disease that isn't there, and it betrays the fact that they see Autism in an exclusively negative light.

Changing the wording of phrases like this will help, but changing their beliefs and direction would be much better.

I can't list specific words, but perhaps I can explain the attitude I dislike: In the radio ads I mentioned previously, their ending slogan is one that I have no objection to "Early detection can make a lifetime of difference" or something to that effect. In this slogan I can actually see some of the change that Tambourine-Man wrote about. This particular message is a more positive one than others they have had in the past.

HOWEVER, the main body of the ad (apart from the end slogan) I still find offensive. It is all about the story one man as he grows up. At first he did not know what autism was or how to even spell it. Then in college he finds that his room mate's brother has it and he is still not sure what it really means. Then his best friend's son is diagnosed with it and they are both "in shock." Then he says "I still remember the look on my wife's face, I knew something was wrong. I'll never forget the way I felt when I heard our son had autism. *voiceover announcer* Autism is getting closer to home" something something "Early detection can make a lifetime of difference."

That ad really sounds like a fear campaign to me because it's like AAAH THEY'RE COMING!! !! YOUR KIDS MIGHT GET IT TOO!!

My husband said the ad would be awesome if the man himself ended up being diagnosed with it afterward. I agree with this but in my opinion the general population does not have much of a concept of high-functioners and they would have to realize this before they could understand that said man had grown up without realizing he was autistic. So I suppose more awareness needs to be raised. Not for LFA, but for HFA and AS instead.

Good point Myth. Sadly and strangely enough, Autism Speaks did not seem to be aware of higher functioning autistics in the earlier days.

Now they are. The responses to my articles have certainly revealed a wealth of parents who love their children unconditionally and only want to see them have better opportunities.

We can't just attack, because our message remains small. There are a lot of parent-haters on these boards. Our parents were uninformed. Let's make things better for the autistic children of the future, by spreading a balanced message about the realities of autism.

Here are some words I think autistics are offended by...



Cure

Epidemic

Disease

Infection

Tragedy



I'm sure there are many more.

I think you are doing a good thing, Tambourine-Man. I know that my husband is also interested in spreading awareness and helping others to understand but he doesn't know where to start.

Global Health Crisis

Comparing disease statistics with Autism statistics

Eradicate

For educational purposes they might provide greater details on how research indicates that autistic traits go further out into the population, than just the diagnosed spectrum. Information on the broader autism phenotype, and information on research that indicates that close to 30 percent of the population have at least one trait. In other words, autistic traits aren't necessarily always indicative of a condition that one finds impairing in life.

It's good to have the personal stories as yours that illustrates how diverse individuals with autism are, but it's also good to have third party references that provide objective information from research for educational awareness.

I doubt many people really understand how much of a spectrum autism is in affecting a sizeable portion of the population, rather than just the diagnosed cases that are considered impairing. It's pretty amazing to find out that close to 30% of the population have at least one of the traits of autism.

They could also sponsor research to determine how many people in the adult population have adapted to autism, what mechanisms they have used to adapt, and some idea of the numbers of individuals in the general population that have gone undiagnosed.

A research project was done in England that showed an equivalent number of ASD's in the adult population as there were in the juvenile population, when the effort was actually done to screen adults.

We could use a study like that in the US, as well. In England it suggests that the epidemic statement is a little misleading, unless one attempts to screen for autism in the older demographic of the country, as well as in the juvenile population.

Wonderful, ahogday!

I have emailed the link to this thread to some important people within Autism Speaks. They will take a look at it.

Your suggestions DO have and impact and make a difference.

The more people politely offer constructive suggestions, the more change we will see.

If you don't believe me, don't bother posting. You can't do what you won't try to do.

Am I optimistic? Just look at the homepage. A "can't do" won't get you anywhere.

That's great. This thread seems like the first one I have seen where a variety of people are contributing constructive suggestions for change and improvement in the organization. It didn't seem possible 6 months ago, but it does seem possible now.

If we can see just one clear change from the results of this dialogue, for example, a change in the quote by Dana Marnanes Bio slogan regarding Epidemic, then people can actually objectively see our input has made a real difference, and that the spirit of the interview was meaningful, not just rhetoric.

That could potentially lead to further improvements in dialogue for constructive suggestions for the organization.

Perhaps at some point the environment will be such where one of the important individuals of the organization could discuss issues on a thread here. At this point I can't imagine that happening anywhere else, other than the Autism Speaks website. That would truly be groundbreaking.

A moderator could potentially keep a close eye on it, to moderate individuals that might want to get involved in an attempt to kill the conversation.