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Autism Speaks to merge with DAN!……….
That is not true, or not yet true: It is a prediction I made half-seriously to a friend last week after I saw that Autism Speaks was promoting the Discover Magazine article on autism not being just in the head. “Autism Speaks congratulates these researchers for their important contributions to changing the way autism is conceptualized,” the Autism Speaks website noted, and then “It will only be through support of such innovative research [on 'brain and non-brain systems'] that the causes and biological basis of autism will be resolved.” I had this statement in mind as I watched the new Autism Speaks video, A World Where….., with its absolutist pronouncements of “making autism a word for the history books” and of creating a world in which “no family has to live with autism”—a world, that is, in which, with both cause and cure known, there would be no more autism; in which autism, having been combatted, would be defeated.
Autism Speaks has indeed gone biomedical, with the April 5th announcement that Katie Wright-Hildebrand, daughter of Autism Speaks co-founders Bob and Suzanne Wright, is now on the boards of the National Autism Association (NAA) and of Safe Minds, two organizations that advocate for a link between autism and mercury. Wright-Hildebrand’s statement on the April 5th Oprah that vaccines are the cause of her son becoming autistic further suggests that we will be hearing more about this particular theory of autism aetiology, despite (as was pointed out by pediatrician and autism mother Dr. Anshu Batra on the show) there being no (at least not yet) valid scientific evidence for such a connection.
We already have heard a great deal about such a link. As a study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.
There is a lot more to the science of autism than mercury and vaccines, as more than a few commenters here have been noting. The “vaccines cause autism theory” is quite straightforward to present, as it emphasizes a clear cause (a vaccine or a mercury-based preservative, thimerasol) and effect (a child becomes autistic). In contrast, research studies in neuroscience and genetics do not offer such simple and direct answers about autism, and often seem only to add to the complexity; at such times, I am very glad to be able to turn to a scientist (and, indeed, to a genetic epidemiologist).
The April issue of Science contains an article (available if you have a subscription) by Chris Mooney and Matthew Nisbet, Ph.D., on what I’ll refer to as the disconnect between science (and scientists) and the public. Chris Mooney writes The Intersection and is the Washington correspondent for Seed magazine; Matthew Nisbet writes Framing Science and is a professor in the School of Communication at American University. Writes Mooney:
Nisbet and I are advising scientists to start to actively “frame” their knowledge, especially on hot-button issues like evolution, global warming, embryonic stem cell research.
On these highly politicized topics, scientists need to stop thinking that technical knowledge, alone, suffices to drive decision-making or change minds. That’s simply not how the media works, or how the public perceives and processes information. The article (which I’ll post as soon as available) ends with this coda:
Some readers may consider our proposals too Orwellian, preferring the traditional model of safely sticking to the facts. Yet scientists must realize that these facts will be repeatedly misapplied and twisted in direct proportion to their relevance to the political debate and decision-making. In short, as unnatural as it might feel, in many cases, scientists should strategically avoid emphasizing the technical details of science when trying to defend it.
I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role. Thus, for instance, did Wright-Hildebrand say on Oprah:
“This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.”
The evidence of a multitude of autism organizations, books, blogs, academic journals, conferences, etc., etc., etc., would suggest that attention has been paid to autism, and certainly since autism entered Wright-Hildebrand’s life in the past few years. But I know what she means: When you are the mother of an autistic child who is having a moment on the sidewalk, and strangers are staring at you without compassion and understanding, you can feel very alone. Very, very alone, despite the evidence to the contrary that—now that there are more autistic children than ever (1 in 150, 1 in 94 here in New Jersey where I live)—-there must be more parents or aunts or uncles or grandparents or teachers or therapists or aides or bus drivers or piano teachers, etc., of autistic children everywhere.
And with so much autism everywhere—so many more autistic persons accounted for and visible—I do hope that Oprah might present another show on the “many faces of autism,” and perhaps with faces other than appeared on this week’s show (of autistic adults?), and with perspectives about life with autism that emphasize not the “crisis”—not the darkness—but the light. I have seen the Autism Every Day video that was shown on Oprah more than a few times as it has been viewable on Autism Speaks‘s website for the past several months; I would much like to know how the children in that original video are doing now, especially as regards their education. What kind of schools do they attend? What have they learned? What have they struggled with? What works best?
I guess I am being a bit selfish here; I am curious as to the children’s educatio as, since “the video” appeared, my son has had four different teachers and been in four different classrooms. He is now thriving and, if anything, a bit nervous that there is no school today, April 6th, as it is a religious holiday. He is also nearing his last month of being 9 years old, as my son Charlie will turn 10 on May 15th and, as he has gotten older, we have gradually relinquished more of the biomedical sort of “treatments” in favor of his education and in loving, unconditional acceptance of the lovely boy that he is; the boy who, on a walk with snow flurries this afternoon, said “Mom” and held my hand.
My family lives with autism, and life is good. With words and without, Charlie speaks often–speaks now—to me, and this is autism speaking, now.
It was found some time back by Massauchusetts General Hospital research team that autism is linked to the structural rearrangements in 25 -40 genes on chromosome number 16. However, mostly our understanding on the mechanism of autism is like 4 blind people explaining about the shape of elephant. Irrespective of those theories, if you want to know what to do with an autistic child and for some other facts:
http://www.allscienceonline.com/child_worry.html
Venakta
My son was definitely different from the time he was born, though in subtle ways that only became apparent in retrospect. Dr. Wakefield’s 1999 article has not withstood the test of time—-many of the other authors have removed their names from it and the findings have not been repeated by others. Very best—-
About vaccines and autism…
I am actually writing my capstone on this whole “controversy” and came across some very enlightening things that no one had ever mentioned to me or that i have ever seen mentioned thru the media outlet. Mainly, I’d like to bring the attention to the article written by Dr. Andrew Wakefield in 1999 that started the entire MMR/Autism scare. His article stated that there was a strong link between autism and Irritable Bowel Syndrome (IBS) and receiving the attenuated MMR vaccine. After it was published, it came out that Dr. Wakefield was involved in a law suit with the parents of the children involved in the study and that he was also trying to market his own measles vaccine. His work was fabricated. He was stripped of his license, his article was retracted and all the people who had put their names on the article took them off. His results were published for his personal gain. Unfortunately, the word was already out. Immunization rates in the UK dropped 30%, there was a huge outbreak of measles and, subsequently, 11,000 children were hospitalized and 125 children died. After it was retracted, the rates of immunization went back up, but, unfortunately, the damage was done. Since then, many theories of the cause of autism have been linked to attenuated vaccines like the MMR and varicella, but no proof has ever shown there is. The only theory that has any substance is the mitochondrail disorders being linked to attenuated vaccines. A study was done in April of 2008 that showed that, of the children with ASD tested, 65% were shown to have an underlying mitochondrial disorder. It should be noted, however, that a mitochondrial disorder can be set off by ANY high fever, not just one that you get as a result of a vaccine. I could go on to dispute the Thimerosal theory but let me just say that the amount of mercury and the way it is broken down does not correlate with a toxic level of mercury that causes neurological defects. Also, to concur with a blogger before me, I could also say that my son’s symptoms showed up around 15 months when he got his MMR, however I would be kidding myself. Looking back, there were signs that something was different about him and I think I always knew. I started questioning doctors at 11 months of age. He didn’t start showing the most classic signs until the age of 15-24 months but there were always clues. I hope this puts some of the vaccine/autism controversy to rest for some of you. As for the others, google Dr. Andrew Wakefield and autism and go to a .gov or .org website to get the facts.
Here is a simple set of games that analyze a child from 3 to 6 and give parents immediate feedback on the POSSIBILITY of the presence of Autism.
It does not bill itself as a positive test and highly recommends furterh professional help if the sings are positive.
It is a great help to young parents who unsure of their childs state.
It is easy and fun for the child and very inexpensive.
i have a opinion on the vaccine issue.vaccines and pediatricians are big business and drug companies will never in our lifetime admit their is a link between vaccines and autism.they would be bankrupt with all the law suits.your pediatrician will never tell you the truth either because of all the perks provided them by the drug companies.i am someone who worked for a pediatrician for 5 years before i was a parent myself.their are alot of things that go on that the public is not privy too.as parents we have to question and stand are ground regarding our children and not see our doctors as all knowing.they will sell you on whatever drug or vaccine that the company with the most money is pushing.their sales reps are skilled in the art of persuasion what can i do for you to make you prescribe my drug or push our new vaccine on your patients.every year they add more and more vaccines onto the required list.and the goverment goes right along with them.since when is chickenpox a deadly disease,in new york state it is now mandatory for your chlid to be vaccinated for this for school.the idea of it is just ridiculous.they are giving infants multiple doses of flu vaccine this year,when will it end.my oldest son is on the spectrum and he is the only child i had vaccinated on the goverment schedule.before autism was ever something i would have thought about.he reached every milestone on time was a “normal child” until he was about 18 months old then he lost language and started acting differently.i heard about the vaccine issue and spoke to few doctors that i knew personally and they all denied any connection.calling parents who believe this crazy.doing research and from what i had seen for myself in the office made me realize that true or not the drug companies would never even give parents any respect on the issue,they will just shoot us down.my approach with my son was to just love and be their for him,now he is in a private school in a high functioning class and he made it their by my never giving up on him.i dont believe their will ever be a miracle pill,or cure for our children.they just need loads of love and guidance .dont give up.look them in the eye every day talk to them hug them even if they dont want it.my son hugs and kisses me every morning before school.hestill has his moments,and who knows what the future holds but he’ll always have his family in his corner
Let’s never stop negotiating for a better future for our children and adults with Autism.These kiddies and their families(in many cases) are isolated because society doesn’t accept them or find it hard to integrate them.There are limited facilities in South Africa for those who suffer from this disorder.Many of these children end up in government mental homes eventually- because of the lack of understanding and the limited facilities available.My 14 year Autistic son(who has the capacity of a 5year old) had to be admitted for observation and treatment recently.He was assualted and sodomized by a much older patient.
I just want to say that as much as my family was uplifted by the greater awareness and advocacy community in their support as charges were brought against my six year old multiple differences son, I too was just as let down by all the major autism big whigs such as autism speaks, etc.
None of them even mentioned the sickness of such an act committed against my son. It simply proves to me that they have no care for our autistic children, but great care for the funding they bring. I will never support them again, as I would rather they return the millions they have taken in and instead have people donate a little compassion and understanding on the matter.
1803 days ago
[...] is, the Wrights seem to feel it necessary to underscore the science behind the research that they support; one wonders if some eyebrowns have been raised in regard to [...]
1815 days ago
[...] the standard American diet. That said, some fish contain high levels of metal contaminants such as mercury, which is linked to autism and birth defects. The type of fish a pregnant woman chooses is very important. Wild Alaskan [...]
Thanks, David—it was indeed interesting!
I will like to thanks for watching the autism issue on Oprah Winfrey show.It was very intresting.
Kassiane,
“but what frightens me more is how people refuse to see it for what it is.”
I’m noticing that more and more myself. It’s as if people forget that the Nazis didn’t event eugenics but only showed how wrong it can go. Not that it was going all that ‘right’ before WWII. They don’t think of themselves as proposing we step back on the same path, substituting social pressures and economic reasons, as though the reasons somehow change the results.
Charlie is a great kid born when he was…and lucky to have differently wired parents rather than standard issue NT fit in with the Joneses types. In all of one hour he just charmed me…just being.
And actually ON topic…the eugenicst language being used more and more in regards to autism scares me terribly…but what frightens me more is how people refuse to see it for what it is. It’s like so many people carry around sand and stick their head in it whenever anyone says the E word.
Not at all—I am really glad you raised these issues. I think a lot about what might have happened to Charlie had he been born in a different time—-things are not easy but I do think they could be worse.
Kristina,
My apologies. I should have been more specific. The slanted information I was referring to is on Leslie’s blog, and the entire comment was directed specifically to her and not in reference to anyone else.
Zaecus, thanks so much for this and I regret that the information on this topic on this blog seems so “slanted.” While I think pre-natal testing can be helpful in some regards, I do not advocate for selective breeding and I regret if anything I have written here suggests that (and I realize it must; double regrets). If I had known Charlie was autistic in utero, there would have been no question that we would have had him. Same if we knew he had Down Syndrome. I regret that I was not clear about this.
If I may note a few things: My husband is an “older dad” and has, as I well knew, ADHD that was probably rather “severe” when he was a child; he had some hard times growing up which I don’t want to go into too much detail about—it is his story—but I’ll just say that, when he went to Catholic grade school, the nuns were none too please with a fast-talking, frequently talking, boy who could not sit still, pay attention, and so forth. My husband was a taxi driver in New York City for awhile (he’s now a history professor). He has a certain way of seeing certain things, and of not seeing other things (such as where he last put keys, glasses, etc.).
I’ve my own “non NT” aspects, as another commenter hinted at previously…….
When Charlie was a baby, a professor at the school where Jim was teaching said to him (to us, really) words to the effect of “I didn’t think you could do it” or maybe it was “I didn’t think you could do such a good job.” I guess I don’t remember exactly because my ears were burning.
Leslie,
Interestingly enough, when I went looking for information on the subject of older parents, I also got a reference from PubMed; http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1127459
Please note the final paragraph. Also note that it says something -positive- about having children late in life, which none of the slanted information in your blog does.
I already let you know that I was incapable of being reasonable about this. Now, I’ll tell you why.
Eugenics is a very slippery ideology. For quite some time before WWII, it was considered a very intellectual philosophical stance. Of course, anytime someone argues against it, the defense of “it’s only information” can easily be made, but let’s -look- at that information.
1) It puts a value on human life: The world is better off without the people who might have been born. The simple hope of eliminating or reducing some trait or condition is enough to justify preventing the births of people who might carry them.
2) It puts a value on human potential: Though similar to the first, this is different because it allows those advocating for selective breeding–which you advocate, and -is- a method of eugenics–to imply that the traits and conditions removed from the gene pool =won’t take anything valuable, much less -anyone- valuable, with them=. The potential outcome of a condition or trait expressing itself is a known quantity, but the possible life experiences of the person thus born is unknowable, and for those who push information about pre-natal tests, cautions against having children late in life, and the ‘information’ that people who carry certain traits should consider adoption, that means it’s -nil-, something to be removed from consideration because to do otherwise means having to accept the -infinite- possibilities of human potential and take the responsible course of not encouraging older parents to avoid the possibility of having a child who might carry a medical condition or negative trait.
3) It’s a foothold: You could be the most reasonable and sane person on the planet, loving knowledge for the sake of knowledge and seeking to do know harm, but once the idea is out there and -not challenged-, it allows others who are less enlightened to push their ideas about what should be considered an ‘undesirable’ trait to pass on to your children. It starts with disabilities because no one is going to argue that people with disabilities are too valuable to prevent, and it goes on to intelligence, physical prowess, appearance.
Do you think I’m wrong? http://en.wikipedia.org/wiki/Nazi_eugenics
Do you think it can’t happen again? The only way it -can- happen again is if people start really believing it can’t because they’ll never be able to stop it in time. For all I know, we may already be heading there, but I’ll do my part to stop it.
I admire science, but I don’t consider it harmless and safe the way you seem to from my perspective. That link I just gave is what happens when science is handed to people who understand it poorly and have the power to enforce their ideas.
A propos the “umbrella”: the difference between lumping pancreatic cancer together with leukemia, on the one hand, and putting “Kanner” autism and Asperger syndrome together, is precisely this: individuals can and *do* move between the various diagnoses under the autism umbrella.
So the umbrella makes sense for autism in ways that it does not for, say, cancer.
And the worst thing we can do for parents of newly diagnosed autistic kids is to lead them to believe that issues that so-called “higher functioning” autistic people wrestle with are irrelevant to them and their kids. The odds are constantly increasing that one day they will become *very* relevant. It behooves them to get on the right side, rather than the wrong side, of those battles, and support what adult autistic self-advocates are fighting for.
But does advanced paternal age actually cause autism, or is it merely associated with autism? Big, huge important difference.
And sorry, but statements about “worse” outcomes and “risk” are ablist statements with eugenic implications. Stating the desire to “prevent autism” is something which should (and does) evoke nervousness from all autistic people and anyone who cares for one.
Zaecus,
I am very glad that you commented.
You are free to do as you wish. Having information and understanding the risks to the offspring is not eugenics, it is knowledge. The papers that I present are published in Pub Med and are the result of much hard work by the scientists who wrote them. They deserve to be read. They contains the fruit of many, many years of research and concern for truth or just the scientists curiosity.
My perspective is of an offspring. You also are the offspring of an older father and your perspective, opinions, and anger, experiences are welcome and valid. I did say, and so does Dr. Croen from the Kaiser study, as well as Majella Byrne’s, that the outcome for daughters of fathers in the 49 and up age range appears to be much worse than for sons.
My opinion is no better than your. That is why we should communicate with each other and maybe learn from each other.