Saturday, April 18, 2009

A rival to Autism speaks?

I have just gotten an e-mail from a new organization that has formed called the autism science foundation. This organization seems to be very similar to autism speaks, except obviously it will be much smaller. There are some differences. The organization is being started by Allison Tepper-Singer who was featured in the infamous video in which she stated that she contemplated driving off a bridge with her autistic child in the car. She will be the president of the organization. Also Tepper-Singer recently resigned from her position at Autism Speaks due to the fact that she does not believe that vaccines are a causative agent in autism. Given the fact that Sally Bernard is on the board of directors of AS and the wish to appease parents who cling to the misguided belief that vaccines cause autism, AS has started to fund projects that seek out a connection between autism and vaccines. Tepper-Singer in her email emphasizes the fact that the autism science foundation will not fund research related to vaccines and conceded that the evidence has exonerated vaccines as a cause of autism. She has started with organization with Karen London who along with her husband, psychiatrist Eric London started NAAR (National alliance for autism research) which along with CAN (cure autism now) merged with autism speaks about four years ago. Also Paul Offit who wrote the book false prophets of autism, which goes into the work showing vaccines do not cause autism is also on the board of directors. For these reasons it seems there is a good chance that it will remain a "pro-vax" organization. However, one never knows what pressure from the many parents of autistic children who insist their child became autistic because of a vaccine will influence this fledgling organization at some point. Also on ASF's board of directors:

Michael Lewis, attorney, mediator and grandfather of a child with autism. ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).

It will be interesting to see how and to what extent this new organization becomes another whipping boy for the ND movement. I still remember the pre-autism speaks days when there was just CAN and NAAR. CAN and by extension Jon Shestack and Portia Iverson got the brunt of the ND criticism and abuse, including autistics.org's infamous and tasteless abortion cartoon. NAAR generated some protests but not to the same extent as CAN.

The organization is small, just starting out and clearly does not have the capital and resources of autism speaks, so it will remain to be seen how long they last and what sort of influence they have. Of course, one possible small advantage that they have is Tepper-Singer's seat on the IACC. With Singer tendering her resignation from AS, autism speaks has no representation on the IACC. Ironically enough, the neurodiversity movement, with Stephen Shore at the helm and who is another one of the public members ,has more representation on the IACC than AS itself, in spite of the fact Jon and Portia are on the board of directors of AS and it was CAN who originally lobbied for the combating autism act, whose only intention was to find ways to prevent and cure autism.

One other thing, on perusal of ASF's web site, that I am unclear on, is the extent that they will do lobbying of government agencies in the manner that AS has done. If they do, given that they are small and just starting out they will not likely have the same influence. I am a believer in the old saw of too many cooks spoil the broth. It is just better if these organizations fund scientific research that will lead to advances in the understanding of causes of autism and its possible treatments, assuming prevention and cure may not be realistic goals in the foreseeable future.

Personally I am glad this second organization was created. Having one monopoly like Autism Speaks leads to an organization that will get less good things done. I don't feel that autism speaks should be the only game in town. Also, there are alternative organizations to go to for scientists who need funding. Also, their emphasis on vaccines not causing autism is welcome. Vaccine research has just been one dead end after another and has nothing promising to offer.

Time will tell what the future bodes for the autism science foundation.

23 comments:

Jake Crosby said...

This organization will have plenty of capital and resources at their disposal thanks to big pharma. I doubt this organization will do any damage to the NDs, given the fact that Paul Offit is both a prominent member as well as a friend of Kathleen Seidel.

Marius Filip said...

What I do not understand is how come no group of people with autism have created a pro-cure organization so far.

As far as my understanding goes, both Autism Speaks and Autism Science Foundation have been formed by parents of autistic children.

So, at least for an outsider, the ND folks really look as the representatives of autistics, at least the ones who can speak for themselves.

Statistically speaking, are they a majority? Is it true that most people with autism who can express a choice do not want to be cured?

If so, NDs position is hard to shake - and I expect that their influence can only grow in the future.

Let's consider the autistic children who are being treated today. In the case they will recover enough to be functional, will they embark, as adults, on the ND ship and will they reject the past efforts of their parents?

If so, it would be a shame; but the simple fact that there is no non-ND and pro-cure organization of autistic adults makes me believe that this course of events will be inevitable.

I.e. the story of the Prodigal Son, time and again - but without the happy reunion.

Anonymous said...

Here's a good question. Will Kev Leitch support this new organization along with his other fellow bloggers?

jonathan said...

Marius: The majority of persons with autism are not employed. I worked sporadically over a 27 plus year period, but i have been unemployed for a good length of time and am now basically retired in my early 50s. Therefore, it is not likely they would start an organization like autism speaks or the autism science foundation.

I believe that the neurodiversity autistics are not a true representative of autistic persons and only certain persons with an interest in autism will log onto the internet and express their opinions. The number of pro-cure autistics whom I have encountered seems to be growing, however.

You might be interested in reading my essay, neurodiversity: just say no for my thoughts on the topic.

Anonymous: I can't speak for Kevin Leitch, but it is unlikely, in my opinion, that most of his fellow bloggers will support the autism science foundation since it is likely they will fund genetic research which at least some of the persons on the ND movement are against because they believe it will result in a prenatal test that will allow an autistic fetus to be aborted.

Jake Crosby said...

Well, Kristina Chew is apparently supporting ASF.
http://autism.change.org/blog/view/tell_the_autism_science_foundation_what_you_think

JediKnight2 said...

It was a huge mistake on Alison's part to comment in the video about considering driving her daughter, Jodie, off the bridge. Yes, she has a severely autistic daughter who's ignorant about the fact Jodie's still human, but at least she's aware of the impact autism has on individuals like myself.

Although I do believe vaccines may possibly play a role in helping to trigger one to develop autism (or into an autistic person as many people on the spectrum prefer to be called as if I insulted them while it's not my fault they have trouble grasping that I'm not saying they're "plagued" by an illness they developed), I do favor Alison's decision to form the new autism science foundation as I believe genetics plays a larger role. I do not believe vaccines play the sole role so I wouldn't outlaw them as the likelihood of developing diseases like tuberculosis would increase.
Additionally, I've heard of some toddlers regressing in their development when they haven't even had the MMR yet. It's really more of a result of environmental and biological factors (vaccines included) triggering the likelihood of an autistic toddler regressing and/or developing symptoms that particular individual was vulnerable to develop in the first place as a result of the way that individual was born due to an accident that's more likely to happen within families of those who have any type of learning disability, developmental disability, or psychiatric disorder.

Jake, you took the remaining words out of my mouth. Like Jon said, this new, small organization that isn't going to focus on blaming vaccines and attempting to boycott them should become a huge success, possibly more successful than the merged Autism Speaks that's more focused on researching and treating autism as if it's a medical condition.

Anonymous said...

Another ND blogger supporting ASF:

http://onedadsopinion.blogspot.com/2009/04/strong-current-narrow-channel.html

Stephanie Lynn Keil said...

Marius:

I would never be able to create a "group" or organization like ASAN or a movement such as ND because of my autism.

This is why you don't see such a group, because those who desire such things are not capable of doing so and have to focus on our own lives, getting help and trying to manage our severe disability (ies).

I don't understand such social/political complexities required. I have severe autism with a high IQ and such a thing is impossible for me.

Marius Filip said...

Jonathan: I've read you essay. Well said.

Stephanie: I agree with what you are saying.

I've just took a look at the Autism Hub website and I was horrified to see how many pro ND blogs are out there.

It's not just autistic folks. A certain mom said she had 6 kids, 5 with autism. Another mom joined in with a comment and said "hey, I have one kid on the spectrum and another one in the process of evaluation!". They spoke as if autism was some diploma degree to boast about.

I understand that the people with less functional autism cannot create organizations like ASAN.

Yet, an online, virtual "organization" might be possible, I think. And, into the same time, to use the channels of Autism Speaks or other organizations to voice such opinions to the world.

I also admit that there may be things I cannot grasp or certain needs to pursue such an endeavor that are not in the reach of a person with autism and that I take for granted.

My opinion derives from the observation that both you and Jonathan write so well and, to me at least, your testimonies are so convincing.

Anonymous said...

I think its interesting that Kevin Leitch has failed thus far to respond to the development of ASF. I suspect he is trying to determine how he will frame his competing interests of supporting ASF and his faux ND support. The two don't seem compatible to me so it will be interesting to see how he spins it.

SM69 said...

Sorry for the long post:

I finally had a look at the ASF web site; well, they have not got their facts right for a start, which suggests that they are not objective about the current published studies in autism, or have some inability to analyze the data compressively and form plausible hypothesis behind today’s features, incorporating the many published reports available. This also suggests that they have not realized that billions have already been spent on genetic studies already with little outcomes. The sort of study they might propose are the one that already gets funding in University sector, and again this has been pretty unhelpful overall, so I do not see what this will add to the game, other than getting money for their own organization and some sort of attention as everyone seem to be willing to want to get. It’s funny they mention epigenetic, because epigenetic is genetic + environment, but maybe they have not yet realized this.


I read on a slight different subject a recent survey done in the US by the American Lung Association reviewing the most polluted US sites. I include bellow just a few of the outcomes, spanning a fairly wide range of environmental issues. How could people continue to believe that these issues have no multiple consequences on health and development is beyond me. How could people not see that it’s not just autism that has become an issue in recent years, how could these people not make the links between amongst everything we see at the moment?


Regarding whether the idea of intervention in autism is valid or justified or not, ASD is a wide spectrum: At one end we have individuals with full dependency and little prospect to hold a decent life. Whilst we can argue that things would indeed be better for these people if they were well care for, accepted etc, they also often have health issues that needs addressing and can be addressed, this leads to general improvement in term of health, well being and behaviours. At the other end of the spectrum, people tend to be much more able to function and it is debatable whether someone able to get married, hold a job, set up an organization etc is really on the spectrum or not, but in my opinion, yes they can be, even with some kind of apparent success, this does not necessarily equal fulfillments, warrant no issue of anxiety, depression etc.

I have recently had the opportunity to meet more closely several people HFA, I am very puzzled by what I have come to experience. I am now wondering if in at least a few cases, there is not a serious overall with Borderline Personality Disorder. In either case, what ever these people have, they have a life they do not fully like, they would like to feel better, and when distressed, even when present in hugely accommodating settings, they create a total mess to others. My recent experience has been so extreme, that I see no justifications to these highly offensive and disturbed behaviours, even with a diagnosis or a combination of diagnosis to explain them. I do not think how to be accommodating can help the person and how anyone can really tolerate the sort of treatment, unless the person “victim” is also messed up in some ways. I have come to experience is simply pure madness, well beyond anything I could possibly imagine possible.

The environmental survey:

Each year the American Lung Association releases a list of the 10 most air polluted U.S. cities, and each year Los Angeles makes it into the top three on these lists in all categories: Short-term particle pollution, year-round particle pollution and ozone pollution. This is due, in part, to the lay of the land. Los Angeles’ "Geography and meteorology are key components in the air quality but so are the fact that there are lots of people and lots of cars and trucks and lots of ships," says Kerry Drake, Associate Director in the Region 9 Air Division of the EPA, an area that includes Los Angeles. "But to distinguish it from other areas, the backdrop of L.A. is mountains and the only outlet is a narrow mountain pass that goes through Palm Springs." Add to that 18 million people and two of the largest ports in the country, and you get a toxic cocktail for air quality that is concerning, to say the least. "PM 2.5 is a fine particulate that can get deeply imbedded into your lungs," says Drake. "There are health impacts that can range from asthma to premature death." Ozone is also a health risk. "Most people think of it as smog," says Drake. "It gets into your lungs and can cause asthma and have other respiratory impacts that can lead to permanent lung damage."

To curb air pollution problems, the EPA is working with local air agencies to help them comply with the Federal Clean Air act. The goal is to establish air pollution standards and then work to improve air quality as fast as possible.
Water: Streams and Headwaters in Appalachia
The Appalachia watersheds are the most threatened in America today, due to mountaintop removal mining, in which coal companies blast off the tops of entire mountain ranges to get to thin seams of coal buried deep below. Rubble and waste rock from the mountains are pushed into adjacent valleys, creating what is called "valley fill," where an entire valley is literally filled in with the soil from the mountain top, burying existing streams. "In the coal fields in the southern part of West Virginia our experts have determined that in many areas more than 25 percent and in some areas upwards of 30 to 40 percent of the steams in the watersheds have been obliterated by mountaintop removal coal mining," says Joan Mulhern, legislative council for Earth Justice. This is significant because of the critical function headwater streams play. "Headwater streams are the lifeblood of the river systems, just like your capillaries in your body are critical to the functioning of your arteries," says Mulhern. "If all of your capillaries are cut off, your veins and your arteries aren't going to work. It’s the same with the watershed. The headwater streams are where life begins in the watershed."
According to Mulhern the EPA did a study last summer that showed that in coal mining areas in West Virginia where mining has occurred and streams have been destroyed, over 90 percent of the downstream waters have been significantly impaired. Headwaters in areas of Tennessee and Kentucky have also been destroyed. "Over 2,000 miles of streams have been buried over the last 15 years by mountaintop removal," says Mulhern. While the Obama administration has signaled concern about this issue, no concrete steps are currently being taken to resolve it.
Water: Gulf of Mexico
The northern Gulf of Mexico along the Louisiana-Texas coast is considered one of the dirtiest bodies of water in the U.S. because it is a hypoxic zone in which no plant or fish life can grow. The culprit? Pollution coming down the Mississippi River, which drains water from 46 percent of the continental U.S. As the Mississippi flows into the Gulf, it carries with it a lot of pollution, including excess nutrients such as nitrates and phosphates that feed the growth of plants. "When those nutrients get into the Gulf of Mexico, they feed the plants and algae and other organisms in the water," says Mulhern. "This sucks up all the oxygen in the area and creates a dead zone, an area of the Gulf that no longer contains enough oxygen to sustain life." Hypoxia can cause fish to leave the area and can cause stress or death to organisms that are rooted on the bottom, unable to leave.
"It's estimated that there’s now a dead area the size of Connecticut in a water system that was previously abundant with life, including fish and shellfish that had been the mainstay of the economies in this area," says Mulhern. A federal and state task force has been meeting to address the issue but so far, says Mulhern, there's nothing in place to adequately address the problem.
Land: Escambia Wood, Pensacola, Florida
The former Escambia Wood Treating Company in Pensacola, Fla., was on a 26-acre property surrounded by commercial and residential communities. The company manufactured wood products treated with creosote and pentachlorophenol (PCP) between 1942 and 1982, when it was abandoned by the owner. "The facility operated for a long period of time and did not follow environmentally friendly waste management practices," says David Keefer, a Superfund Remedial Section Chief for the EPA. "The spent chemicals were stored in unlined ponds, and would seep into the ground and penetrate the soil." Pollution from the site has impacted 96 acres of land and has created a groundwater plume of contamination that extends about 1.3 miles from the site. The soil and ground water around the site is polluted with creosote, naphthalene, pentachlorophenol, polyaromatic hydrocarbons and dioxin. "These pose carcinogenic risk," says Keefer. Pollution at the site has been deemed toxic enough to relocate the people in several of the surrounding communities. The EPA has so far spent or committed to spend approximately $54.3 million on the site relocation and clean up. The project has been divided into two parts; dealing with contaminated soil, and dealing with ground water pollutions. "We are about 60 percent through what consists of excavating the impacted soil on or around the site," says Keefer. Plans include stabilizing, then covering or "capping" contaminated soil. The EPA's actions have, to date, largely eliminated the risk of human exposure to contaminants from the site. Eventually, the community hopes to revitalize the area, creating a commercial site that would employ 400 people from the community. Fully restoring the groundwater will take longer. "The cleaning of the groundwater will take about 10 years," says Keefer. The goal is to clean up the groundwater to the point that it could qualify as drinking water.

jonathan said...

SM69: I don't know enough about what the autism science foundation says to ascertain what they have gotten right or wrong on perusal of their web page. However, I think it is unlikely they will solely fund genetic research. It is likely that research such as what Lindsay Oberman Marco Iacoboni, due on mu wave suppression and mirror neurons will be funded. Also, my friend Matthew Belmonte who does fMRI connectivity studies may also apply for funding there. It is likely those enterprises could be funded. I doubt the autism science foundation will exclusively fund genetics and they are still much too new to prejudge as you seem to be doing.

I also have no idea what relevance your verbose data on air pollution has with research on autism, other than maybe you are trying to imply, there is something in the environment similar to smog that causes autism. If that is the case, once again, I feel that since you are a scientist you should provide some sort of empirical evidence for this which as far as I can tell you haven't done. I don't think anyone else has shown anything in the environment that has a link with the vast majority of cases of conditions that are labeled autism either.

Stephanie Lynn Keil said...

I believe that many of those in the ND movement, especially the "leaders," have borderline personality disorder and have simply jumped onto the Autism bandwagon.

Some of the symptoms are similar on the surface but they manifest for VERY different reasons.

I'm definitely not an expert but I used to have an obsession with psychiatry/medical texts and around eleven I memorized most of the DSM criteria and read widely on psychiatric disorders.

I've written much about ND, autism and BPD but have never publicly posted anything about it because I know it will generate controversy.

I was diagnosed with BPD because of severe trauma I suffered but it was during a time I had my most severe PTSD symptoms. I no longer meet the criteria for BPD but I do still have PTSD.

I know people with BPD have rigid, black and white thinking, like those with more severe forms of autism.

BPD is the most common misdiagnosis among females with HFA/AS, I believe, because the symptoms overlap so much. What causes the symptoms is the difference and it also determines treatment.

I know that people with BPD can understand social situations just fine though, unlike people with an ASD.

The overlap of BPD/ASD, especially among females and misdiagnosis, has been written about before.

Anonymous said...

Boy, did I call this one right:

http://leftbrainrightbrain.co.uk/?p=2178

For Mr. Leitch, vaccines are more important than anything else dealing with autism.

SM69 said...
This comment has been removed by the author.
jonathan said...

SM69: your post is quite verbose and I don't feel inclined to read the whole thing. It would be easier for me if you could be way more concise.

I will make two comments. Though I have not read Palmer's studies from what i hear second hand he is a really lousy scientist who took mercury exposure that should have been applied to one birth cohort and applied it to a range of children from obscure special ed data whose ages ranged over 12 years. Also, he did not control for people moving in and out of their neighborhoods. If all of this is true, his studies are absolutely worthless.

Perhaps instead of complaining about ASF you should be applying for grants from them. Perhaps they will fund some of your activities if you say "pretty please"

Stephanie Lynn Keil said...

SM69:

Again, I'm no professional, but I could probably pass the Board Certification for psychiatry because of my previous obsession with medical and psychiatric textbooks.

Sounds like a personality disorder to me, possibly borderline, definitely not autistic. She sounds quite manipulative, quasi-psychotic (the delusional beliefs), identity problems (changing personalities), does not understand money (is she spending it too much/not correctly? borderlines are often quite impulsive and spend money recklessly) is quite dependent and is stalking you (fear of abandonment). She has probably done this to other people and after awhile she will move on to someone else; borderlines typically have very unstable relationships and often feel chronically bored/empty.

Borderlines also like to pretend they have another disorder, typically whatever is popular, and since autism is now the new "thing" every borderline is pretending to have it and since some symptoms are similar it is easy for them to get away with it.

She probably believes she is a "victim" of everything and wants to have an ASD diagnosis so people will feel sorry for her and give her support.

If she understands relationships on an advanced level then she doesn't have autism. Borderlines also have very rigid, black and white thinking, similar to autism, but they don't have such severe obsessions, sensory problems, problems with language, stimming behavior, etc.

BPD is a serious disorder, though, that requires appropriate treatment. Personality disorders are the most stigmatized of all disorders but just remember that whatever she has is probably pretty severe and don't take anything personally because she can't help it any more than an autistic person can help it.

Gingerautie said...

To SM69,

Why would you expose your children to a stranger you only knew through the internet? Is that responsible or normal for a parent to do?

SM69 said...

J. Yes you are right I was too verbose, so I have deleted my post, I think I could do better than this, but I don’t have the time right now. It’s not easy to explain what it takes to demonstrate association between something as complex as autism and an environmental factor (s), it’s only when people start to think about it, really, that one can understand. That’s what I was trying to take you through, but failed! No, I don’t think Palmer is "crap" as you suggest, that’s surely a non-verbose statement to make! but there are limitation to that type of study as I was trying to explain, not because he is not good, but because the analysis is not one that can prove causality. No more on this I promise! For now I will sit and watch what does ASF and fund before making a full judgment and applying, there are other funding organizations that hold more promise at this stage.

laurentius rex said...

Did you know Autism Speaks do not need neurodiversity in the UK as opposition. they have enough from the mainstream parents organisations. \Practically every autism society in the UK cannot stand this MacDonalds Coca Cola Razzamattaz.

Autism Speaks is trying to buy influence in the UK, and it going down like a lead balloon (hey hey hey Led Zeppelin was one of our biggest exports)

I bumped into the Wrights again the other day. They know who I am. I think they will be returning to the USA with there metaphorical tails between there legs, and you know what it might be a salutory experience for Autism Speaks.

The NAS has forty years experience on them.

Say what you will about me (and you probably will)

On Tuesday I was barracking Autism Speaks (complete with armed police warning me not too - not that it made a lot of difference to me) and on Thursday I was sitting next to there UK chief Exec.

Oh well such is the diary of a nobody :)

jonathan said...

Larry- I am sure you went out of your way to make the Wrights know who you are. You still crave to be the center of attention and you can't get over the fact that Jessica Kingsley turned down your book.

You are the Rodney Dangerfield of autism. You do everything you can to be the center of attention and you still can't get any.

laurentius rex said...

Wrong Jonathon, wrong, but I will not go into the details, they will be evident in due time.

I might have tried to get my autibiography published once, but nowadays I am into an altogether different genre.

If you are perpetually self effacing never prepared to step out into the limelight (and there is a lot of risk in that) you will not get any message accross. Public Relations, publicity, that is what political campaigning is all about.

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