Autism Speaks Now
April 6, 2007 by Kristina Chew, PhD
Filed under Health
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.
“Defeat Autism Speaks Now!”
:-p
Sorry, just couldn’t resist!
I had to look and see if it was still April 1st….
When I asked my son’s doctor about vaccines and autism, he said there was no proven link, and I believed him. I’m not a scientist, but I now know, looking back, that my son had autistic traits since infancy.
People will believe what they want to believe. If this vaccine scare keeps gaining momentum, we may have real epidemics on our hands, instead of theoretical ones.
I thought Oprah was disappointing, not that I expected much in the first place. That was a picture of autism, but it had very little to do with my life or my young son. If I videotaped him only while he was flapping his hands, banging his head, or having a tantrum, anyone watching would get a very inaccurate portrait of what kind of a child he is.
As far as Hildebrand and her child, it’s difficut to convince a mom that her instincts may be incorrect. I believe that her son is sick all of the time, but mine is hardly every sick. I could look back and conclude that my son’s development became stunted at 15 months (the same time he had his MMR vaccine), but it was more accurately always a little different and became more pronounced as the developmental bar was raised.
It is the face of autism that we saw on Oprah yesterday that most people will see, because that is where the money is. That is where the politics are.
Thanks for the thoughtful post.
I am predicting several more autism shows that will focus on more specific topics. My Oprah guest wish list on a segment like you mentioned would be: Kristina Chew and family, MOM-NOS and family,Jerry Newport (it may be hard for him, but maybe a tape).
Hi Kristine
The problem I see in general is that the definition of what an”equilibrated” view of what autism is depends very much of the personal ideas about.
For parents very much in the neurodiversity ideas – and considering without basis any concern about vaccines specifically or biomed approach in general-an equilibrated view is related to the focus on autistic adults and a social model of autism- very much related to acceptation and accomodation, when CAUSES /CURES are not the focus of the presentation.And also some epidemiological/sociological research is considered the evidence for this.
For parents very much in the extreme versions of biomedical camp, an equilibrated view is very much related to the consideration of environmental triggers ( and some of them specifically thimerosal/vaccines)- unfortunately many times as CAUSES per se-and therefore if biomedical approaches are not included as seeking for a CURE the view is not complete.And some biochemical/toxicological published science is considered evidence.
With these extreme views in conflict, there would be no presentation to fulffil the expectations of these groups.
Honestly for me the picture is much more complicated. I consider that we need more science- and not of the kind of epidemiology ( such as it has been done) or toxicology ( such as it has been done); but centered on the autistic children/teens/adults biochemistry/metabolism/genetics in correlation to understand the impact of epigenetics on all these. I would want to see more research on the gastrointestinal, immunological,neuroimmunotoxicology aspects of autism and not only genetics or brain research/neurocognition. A multidisciplinary approach considering also the autistic developmental changes-that is- the overall health of not only children but also teens and adults in the ASD.
I would want to see a protocol to properly test/detect/diagnose and treat concomitant medical problems to the ASD diagnosis that remains many times untested/undetected/undiagnosed and untreated and (also many times) are confunded with the general view of ” problematic-aberrant behavior” and considered as the target of neuroleptic/stimulant drugs. I am also talking of medical problems such as epilepsy.
I would want to see a movement of acceptation of people that is different, with a team of parents, autistic adults and committed researchers/doctors looking for better health and life quality in agreement, considering the emotional, pshycological, pshysiological, educational, familiar and sociological aspects of what autism is for each family and how the challenges – many times very difficult- that autism bring to many families to be treated with the needed care and respect for what are the feelings of the parents AND the autistic children/teens/adults well-being and happiness (and all these does not exclude the needed effort of all to make accomodation and inclussion -if it is possible- sucessful).
Autism touches every aspect of a family life. TO dismiss certain parents feelings is wrong. To dismiss certain parents ideas with partial evidence is wrong. To dismiss what the parents saw in their children is wrong. AND to dismiss what autistic adults feel, think and see in their daily lives is also wrong. What I see is for one extreme side the focus on parent´s ideas and feelings and consideration and for the other one the focus ONLY on what autistic adults think on the issue.
And the real situation is much more complicated. For my son, what autistic adults think would have not been useful because he needed the search and the detection of near 45 medical conditions. In the same way, I agree with the need of accomodation, acceptation and another view of disability. Also, I consider that no one supposed trigger ( being them thimerosal/vaccines) can be considered THE CAUSE. For my son, he reacted negatively to a lot of environmental components- from antibiotics to new foods to vaccines . Therefore the consideration of collaborators should be . IMO, carefully analyzed from the point of view of how a genetically susceptible child is affected by the environment. In this sense, the extreme version of biomed neither would have helped my autistic son because to CURE is not the objective; at least in our family.
What I can say of every program that I have seen/read the comments is that MY personal expectations- in the sense of an approach I presented above-are not fullfilled.
I, too, would like to see follow-up shows. An emphasis on education would be good. An explanation of the huge range of the spectrum would be good, too. Oprah’s show was rather narrow in scope.
The spectrum is the problem. People don’t discuss cancer the same way they discuss autism. Pancreatic cancer isn’t lumped with leukemia, etc.
The different autisms should be discussed separately. That umbrella definition does not help the children or anyone else.
Vaccines are a problem for children with lupus, as well as those who are born with the genes for autism, in the classical sense of the term. The vaccine observation is real in classical autism and it does not mean that vaccines cause autism.
I, for one am sick of the umbrella. Who benefits from it?
Hi Leslie, I think the umbrella term has its uses, but not all the time. It has helped me to think about some things regarding Charlie and his “interface” with the world. At other times, it has not been so helpful.
Leslie-
Some vaccines are a problem for some children with lupus. This is expounded on more fully here, where you can see that it is mostly the treatments for lupus (chemotherapy agents, prednisone) that cause the severe immunodepression that causes problems, and not so much the lupus itself.
Indeed, in scrolling down that page, there are many vaccinations that are recommended for lupus patients, because of their increased risk of infection.
Hi Club 166
There are several contraindications for vaccines, published by the CDC
Link
I know several children who reacted badly to first vaccinations and their parents were not prevented. From the anecdotical evidence, there are many parents of autistic children that have the same experiences.
Questions
1-Why peditricians are not more knowledgeable of the contraindications for vaccines, published by the CDC?
2-Why these contraindications are not more known by doctors in general-inlcuding neurologists, looking at the recent published science on the issue that I included only very few reports about?
3-Why the considerations about vaccines are considered a threat for vaccines themselves; and not a warning to improve their safety?
María, thanks for always noting the complications and the complexities about autism. What I hear most of all in accounts about vaccines is the voices of parents seeking to explain their experience and to understand what is going on and, indeed, none of these stories can be discounted.
Maria-
I went to the CDC link and looked at what they listed as contraindications.
They include such things as
-severe allergic reactions (anaphylaxis-if this is not treated immediately with epinephrine, fluids, and steroids the person might die)
-fever >40.5 C (105 F) within 48 hours
-encephalopathy (coma)
There are some things that are listed as precautions, but do not necessarily need to avoid vaccinations. Things such as:
In DTP, severe unconsolable crying lasting >3 hours in less than 48 hours after last dose,
In MMR, moderate or severe acute illness (can have once illness over).
I have not seen evidence that pediatricians are unaware of these contraindications.
This is what I found in a site about lupus written by a lupus sufferer:
http://www.infotech.demon.co.uk/Sandy.htm
11. VACCINATIONS
Beware of vaccinations also. Although it is difficult to be dogmatic about this, there are unfortunately a number of patients in whom a disease flare occurs after, for example, flu vaccine. A sensible pathway is to stick to minimum requirements when travelling abroad.
I know that lupus sufferers often have extreme reactions to mosquito bites long before any treatment occurs. I find it better to talk to people with these conditions than to doctors.
“better to talk to people with these conditions than to doctors”: I guess this is the crux–who does one trust more, people who have lived through certain experiences or those who have studied them and address them professionally?
Then, there is the case of the doctor who is the parent of an autistic child.
Hi Club 166
You say
They include such things as
-severe allergic reactions (anaphylaxis-if this is not treated immediately with epinephrine, fluids, and steroids the person might die)
-fever >40.5 C (105 F) within 48 hours
-encephalopathy (coma)
There are some things that are listed as precautions, but do not necessarily need to avoid vaccinations. Things such as:
In DTP, severe unconsolable crying lasting >3 hours in less than 48 hours after last dose,
In MMR, moderate or severe acute illness (can have once illness over).
I have not seen evidence that pediatricians are unaware of these contraindications.
Well, perhaps some peditricians in your country, bur from the anecdotical evidence I have read, MANY MANY peditricians in your country . and no one from the ones I know in my country, check for IgA defficiency or vitamin A status or nutritional/immunological status before vaccinations. Children around the world are vaccinated, even when having near a treatment with antibiotics or even near contact with other illness- cases of contact with chickenpox and vaccinated with MMR. Even more, if you read carefully the case of MMR, immunedepressed children and other conditions ( such as IgA defficiency) are contraindications for vaccinations and many times the decision is left to the criteria of parents plus doctors- and doctors in practice for me do their best; they rest on research and the “experts” recommendations because they are not scientists in general.
Club 166, my son was IgA severely defficient and he was not tested and his reaction to MMR was very negative.He also had a varicella vaccine that provoked him a very strong case of varicella.Therefore I can tell you that in my anecdotical evidence, peditricians are not aware of the potential consequences or the CDC recommendations.
Do you know a doctor who test for nutritional/vitamin or IgA status before vaccination? A doctor who is concerned because of GI issues and consider them before vaccinations? A doctor who is concerned because of negative reactions to foods and test a child before vaccinations to prevent problems? A doctor who ask before vaccination for immune problems in parents/grandparents or negative reactions to chickenpox or MMR or DPT vaccines- or other vaccines? and I can go on..
Please understand that I am trying to present you my concerns about what I think is the best advocate I can be for my son.I do consider that the correct concern about all these issues could prevent negative reactions in susceptible children-genetically linked to certain differences in their immune system.
Researchers in pharmacovigilance are being more and more concerned about all these issues.
I have concerns of safety because safety trials in vaccines are
1- Very short termed-
2-Only focused in completely healthy children, without illness of any kind- Please remember the trials of the combined vaccines varicella plus MMR.
3-There are no checkings of the long term effect of the COMBINATION in the schedule.That is there is no ONE study considering – in a child with the current pediatric management of childhood infections, a complete study of the changes of the immune system with each round of vaccines ( for example) until the second year and including ALL the doses of the schedule, all the antibiotics rounds for infections and so on.
4-The studies of the vaccines are done for ONE injected only . For example the ^multiple vaccine alone.As you know repeated times the children are given multiple vaccines with OTHER vaccines together the same day ( many times up to very high numberss=7, 8, 9) and there are no studies of the effects of these combinations, many times repeated through the first/second year of life.
I agree with the need of being equilibrated in the analysis; but I disagree when I have been accused of being antivax because I am not.
Kristina
I do think that the problem is not an OR. I do think that researchers must hear and consider the parents and their anecdotical evidence AND the doctors who addressed the problem.
Even when partially we must take into account that correlation is not causation; also many of us around the world saw biochemical and behavioral strong effects of antibiotics/vaccines/ environment in our now diagnosed autistic children to deny a collaboration of the immune system in the presentation of ASD as Concomitant medical problems. Perhaps the problem in the professional world is the lack of a real interest to consider at the level of the molecular biology why certain environmental situations can be/have negative effects in certain susceptible children. Pediatry; modern pediatry, is very much based on antibiotics and vaccines. There should be , there would be resistence when the versions of the combination of medical tools that saved many lives (and for many old doctors who faced death of their patients surely must be difficult) can have negative effects in some children. I understand this.However, for many of us, it is part of our live and it changed because of this; not because they (vaccines/antibiotics) CAUSED autism, but because our autistic children were very much negatively affected by them ; and this is a world of difference.
Again, I am a student of the immune system and of the recent research in autism. And for example, the world of neurotrophins, Growth factors , neuropeptides and second signalling is extremely complex and genetically related and epigenetically/environmentally(even emotional environment) modulated to discard these possibilities at face value, such as it happens many times.
Hi Kristina,
I want to compliment you regarding the facts of your son’s improvements to being more linked to his educational interventions and loving family.
As a Board Certified Behavior Analyst, I get approached by various biomedical professionals trying to get me to collaborate on validating behaviorally their biomedial interventions. I tell them that behavior is my expertise, not biomedical interventions. But the bio camp keeps saying, but our interventions work! (ie: special diets, mud baths, highly strong vitamins and minerals, toxin therapy etc) Then I state back, well I have been in the field of disabilities for over 17 years now, I have not come across one child/adult with Autism that has benefited from the various biomedical interventions out there. Though I have encountered consistent improvements with numerous Autistic clients that have had very good Applied Behavior Analysis / education interventions and loving families.
People don’t discuss cancer the same way they discuss autism. Pancreatic cancer isn’t lumped with leukemia, etc.
People do not talk about cancer in the same way at all. As well as not lumping all the different types of cancer together you do not hear cancer survivors or people with it arguing about who has it the worst. You do not hear breast cancer patients saying well you only had a lumpectomy, I lost my breast. They also ask the people who actually have cancer to speak and be included in all aspects of the discussion. Both of these are different with Autism. I would love to see everyone come together and look towards the common goal of giving these people the best lives that they can have. Through education support and understanding.
Amen.
I hope that some of us, who are so inclined can listen to each even if we have differing experiences. The umbrella is large. I really appreciate Kristina’s warmth, and her deep love for Charlie and her openness. The gene collectors, in my opinion are not going to help a single living person. They also don’t care about my issue of paternal age, which if it the research were widely disceminated, would prevent some of what is now called “autism”. I may have personal experience of this, but I am also very interested in figuring out what else is causing neurodevelopmental disorders. I have read blogs with doctors discussing digestive problems and autism who arrogantly will not consider asking a person with autism about their experience with foods. They call it anecdotal and say they want published peer reviewed data. So thank you Julie for your comment.
The umbrella is large indeed—–the cancer analogy you use, Julia, is interesting: While treatment and discussion of different types of cancer are not “lumped together,” we do talk about “cancer,” in a general, very general sense. Perhaps that is one way that “autisms” might be talked about. Leslie, if I may ask, have you done research regarding the paternal age issue—I am curious on this.
Behavior Analyst,
Thank you for your kind words—-ABA has been a mainstay for Charlie and so for our family. We did try a number of biomedical remedies for him when he was younger and we liked to think we saw results, usually immediate and somewhat transitory—-he was also doing ABA, speech, OT, etc., the whole time. But what ABA and good teaching could do for him became apparent when, around the age of 7, he started to have a lot of extremely challenging behaviors and these worsened and worsened. Resuming an ABA program has helped him learn other ways to communicate and cope; in the mean time, he is coming truly into his own, so to speak: He seems pleased that he can handle obsessions and difficult situations now with less anxiety. He seems glad that he has been learning through days and weeks and months of teaching, not by us giving him a pill or having him receive some sort of infusion via IV or sit in a sauna.
Our days have been good and loving thanks to our lovely boy.
Leslie,
They also don’t care about my issue of paternal age, which if it the research were widely disceminated, would prevent some of what is now called “autism”.
::looks over your blog::
My Dad was 50 years old when I, an aspie, was born. My mother was 35.
I’m 36 years old, and I haven’t had children, yet, because I insist on being capable of providing them certain things before I intentionally bring children into this world.
Let’s not play with words. You’re not talking about preventing autism. You’re talking about preventing people, and I am one of those people. My children, should things not go so badly that you get what appears to be your wish of me never having children, will be those people.
It’s impossible for me to be reasonable on this, and the last few sentences I’ve typed and deleted were considerably more inflammatory that what I am closing with.
What you advocate is eugenics, and eugenics kills people or, to use the sanitized language so preferred today, ‘prevents’ them.
Yes, they do speak about cancer in general terms but I had three of my four grandparents have cancer and each one was different in how they approached treatment based on what kind. Even with all of this seperating they all felt that anyone who had been through anything similar would be worth learning from. I have felt the same scorn from strangers as other parents but when I tell them she is behaving the way that she is because of autism there have been times when they have fired back well she doesn’t seem autistic just bratty. My daughter is anything but. I would like to see more of the spectrum represented so that the only picture of autism is not that from autism everyday. Rebekah does have those moments as well but for the most part she tries very hard when she is out to control as much as she can, they have worked very hard at school to do this. I would like to see all of the faces of autism so that society can learn some understanding and compassion about the whole autism spectrum. I do not want pitty, I would not change her just want to help her. I would like some understanding of why she does what she does not scorn.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I will like to thanks for watching the autism issue on Oprah Winfrey show.It was very intresting.
Thanks, David—it was indeed interesting!
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.
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 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
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.
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.
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—-