CDC, NIH Say Nothing New About Causes of Autism
Mr. Kirby has also been following a recent story in Minnesota, where a large population of Somali immigrants are living. According to various sources (largely The Age of Autism blog, which seems to have adopted this issue as a major topic for the past several months), Somali families are seeing a sudden and disproportionate rise in the incidence of autism among their young children. While there's debate as to just what's really going on (and theories seem to vary), the Somali and autism communities are actively seeking an explanation - and action. Kirby has not only written about the subject - he's already taken action by writing to Julie Gerberding, Director of the CDC, about the situation.
Today, he sent out a Huffington Post "breaking news" story by email. In it, he suggests that the CDC has "finally" admitted that environmental issues may be partially to blame for the rise in autism diagnoses:
Here is the question I posed to CDC:I was surprised to read this, because I was sure that I'd read just such an "admission" many times before. I went back to the mainstream sources to see if I was right - and indeed, all of the major medical institutions have been saying exactly the same thing for a long time. Here are just a few examples:If it is determined that Somali children in Minnesota do in fact have higher rates of autism than non-Somali children in Minnesota, and that they also have higher rates than Somali children in Somalia, will CDC officially concur that autism, at least in these cases, must necessarily have an environmental component?
And here is part of the reply:
While it is important to understand if autism is affecting any group of children disproportionately, it is also important to keep in mind that there are likely multiple causes of the autism spectrum of disorders. Most scientists agree that today's research will show that a person's genetic profile may make them more or less susceptible to ASDs as a result of any number of factors such as infections, the physical environment, chemical exposures, or psychosocial components.
The idea that "chemical exposures" (vaccine related or otherwise) might cause autism still brings virtual apoplexia to certain scientific circles. Let's hope they all take a deep breath and consider the CDC's wisdom.
From the standard NIH (National Institutes of Health) Fact Sheet on Autism: "Scientists aren’t certain what causes autism, but it’s likely that both genetics and environment play a role."I'm not quite sure why Mr. Kirby feels that there's been a breakthrough - or why he feels that there's breaking news worthy of an email blast. It seems to me that we're still exactly where we've always been: assuming that there really is a huge increase in the number of people WITH autism (as opposed to the number of people DIAGNOSED with autism), the reasons are unclear. Most likely, autism spectrum disorders can be traced to a combination of genetic and environmental factors.From the existing CDC (Centers for Disease Control) site on autism: "Scientists think that both genes and the environment play a role, and there might be many causes that lead to ASDs."
From the AAP (American Academy of Pediatriacs) handout about autism for parents: "Studies show that the prevalence of autism has risen. The apparent increase in autism may be due to a combination of factors."
It'd be great to see some huge breaking news event to give us more clarity. But I'm afraid that the event won't be happening today.
Comments
Congrats Lisa Jo! You seem to becoming aware of the poor journalistic hyperbole that is used on the AoA site to keep their lemmings in check. Kirby, et al, use anything that they can find to make it appear that they are actually accomplishing anything.
I find the use of the Somali victims of war to be utterly despicable. I wrote about it here, somewhat tongue-in-cheek:
http://tinyurl.com/694lxj
However, if this claim about Somali children has any validity, which seems doubtful considering the psychological history of being born into, and raised in a war torn country, someone has to get statistics of prevalance, etc. out of Somalia, and that is just about impossible since there is no functioning government.
Ms. Rudy,
With all due respect, I believe your comments about Mr. Kirby’s post are a distortion of the facts. The term “chemical exposures” is far more specific than “environment” which could include naturally occurring environmental impacts such as rainfall or non-chemical impacts such as television viewing. The CDC’s citing chemical exposures as a possible trigger is extremely significant, and it brings the government one step closer to the truth that has been so well-supported in so many studies.
I realize the vaccine industry likes to call these studies “junk science.” But who coined the term “junk science?” The tobacco industry - it was one of many ways corporate interests succeeded in disparaging the studies that linked smoking with lung cancer - resulting in countless deaths.
The first comment to this blog - which seems to attribute autism among the American Somali population to psychological injury - has to be among the most bizarre theories yet, especially in light of the biological, epidemiological and powerful anecdotal evidence that points to vaccines.
I look forward to the day when the truth is fully accepted by our government, and the responsible parties are paying their debt to society. I have no doubt those parties are actively involved in every aspect of the autism/vaccine discussions.
Thank you for helping keep autism in the public eye with your blog.
Mom4Truth -
I believe the NIH IS describing possible causes of autism as broadly as you suggest - and chemical exposures are a part of that set of possible causes.
“Environment,” as I understand the term, encompasses everything from family structure to chemicals in carpets, to exposure to pesticides in drinking water. In essence, it’s the “nurture” in “nature versus nurture.”
I wanted to be sure, though, that I wasn’t misunderstanding the NIH/CDC definition of “environment”, so went to the CRISP database (the database which lists all NIH-funded projects) to quickly see if NIH is funding any research into possible “environmental” causes of autism.
My first pass turned up this project: “Mercury-Induced Immune Dysfunction in Autism/ASD.” PubMed, of course, lists many more. I didn’t dig deeply (busy today) but am guessing this is the tip of a fairly large research iceberg.
Lisa (autism guide)
It’s no great mystery why Mr. Kirby “feels” that there’s been a breakthrough - he’s a paid publicist for anti-vaccine interest groups. His personal feelings and belief are immaterial to the work he does. I propose we stop calling Mr. Kirby a journalist, and use the more descriptive phrase “marketing communications specialist”, or just publicist.
Mom4 - there’s nothing bizarre about linking autistic symptoms to child abuse and neglect. Reactive attachment disorder, for example, can be misinterpreted as an ASD, especially in an educational setting where securing services are more important than medical accuracy.
I suspect some of these kids were malnourished as infants, which can lead to development delay.
FreeSpeaker
“I find the use of the Somali victims of war to be utterly despicable.”
Why don’t you ask the Somali families in Minnesota how they feel about getting tremendous support from people across the country.
- and if someone gets to Africa and finds that the accounts of Somali refugees are correct, that autism does not exist there like it does here, that war torn children living in deplorable conditions are healthier in some ways than children in the US, what will be your excuse be for dismissing the inquiry when you had a chance to make a difference in tens or hundreds of thousands of children’s lives?
The CDC needs a leader who has no patience for a wait and see approach, who ignores the hateful indignation of scientists who have so far come up short, as well as the reckless assurances of those who profit by that ignorance.
The Somali population in Minnesota needs help, especially the ones who will be born next year, and I for one will do everything I can to help them answer our common questions. Their unique situation may save years of research, millions of dollars, and help countless children.
I think it’s worth noting that David Kirby is BOTH a legitimate journalist AND a publicist. I suspect he’s exercising all of his skills relative to the question of “what causes autism.” Here’s his bio from Huffpo:
David Kirby (www.evidenceofharm.com) has been a professional journalist for over 15 years, and has written extensively for The New York Times for the past eight years. Kirby was a contracted writer with the weekly City Section at The Times, where he covered public health, local politics, art and culture, among other subjects. Kirby has also written for a number of national magazines. He was also a foreign correspondent in Mexico and Central America from 1986-1990, where he covered the wars in El Salvador and Nicaragua, and covered politics, corruption and natural disasters in Mexico. From Latin America, he reported for UPI, the San Francisco Examiner, Newsday, The Arizona Republic, Houston Chronicle and the NBC Radio Network.
Kirby has also worked in politics, medical research and public relations. He worked for New York City Council President Carol Bellamy as a special assistant for healthcare, cultural affairs and civil rights, followed by employment as chief scheduler to Manhattan Borough President David N. Dinkins. He also was a senior staff adviser to Dinkins’ successful 1989 run for Mayor of New York City. From 1990-1993, Kirby was Director of Public Information at the American Foundation for AIDS Research (AmFAR), where he acted as press spokesman for Chairwoman Elizabeth Taylor. He also ran his own public relations agency in New York from 1993 through 1996, with clients that included the National Cancer Institute, AmFAR, ABC, BBC, Fox Searchlight, Absolut Vodka, and others.
Lisa (autism guide)
Thank you for your further clarification, Lisa. I based my comment specifically on the quotes you cited in your blog. Regarding the CDC’s reply to Kirby, “Most scientists agree that today’s research will show that a person’s genetic profile may make them more or less susceptible to ASDs as a result of any number of factors such as infections, the physical environment, chemical exposures, or psychosocial components,” I haven’t seen language that strong coming directly from the CDC. I’d love to be proven wrong, however.
I also thought that was silly. The CDC said nothing new, extraordinary or controversial.
Lisa Jo,
I am happy to see that you, Joseph and some others think there is nothing controversial about a CDC statement confirming a consensus view that both genetics and environment play a role in autism causation.
Although I do not share Mr Kirby’s views that specific non-genetic factors are clearly involved, or proven at this time, I keep an open mind and hope that scientific study will pursue both environmental and genetic factors and how they interact - the autism research paradigm shift that was previously mentioned by the U of Minnesota.
So what if Mr. Kirby engaged in some self promoting hyperbole? At least he is publicizing, and thereby helping to spread knowledge of an increasingly respected framework for understanding autism disorders.
Thank you for the very balanced report, Lisa. I appreciate it very much.
You may also be interested in work on Romanian Orphans, who showed quasi-autistic features, including impaired language, lack of reciprocal conversation, were preoccupied with touching and smelling things and had intense, circumscribed interests. Their “autism” was thought to result from trauma and social deprivation.
http://books.google.ca/books?id=1sIxN1qNNDMC&pg=PA51&lpg=PA51&dq=autism+romanian+orphans&source=bl&ots=YfAKihfCSR&sig=dACIw-rQlxghqJYnRd0jDGwfd2M&hl=en&sa=X&oi=book_result&resnum=3&ct=result#PPA50,M1
I think it will be very interesting to see how these Somali children develop in time, now that the source of their psycho-social stress has been removed. If they have quasi-autism, rather than true autism, then based on the experience of the Romanian orphans, their autism symptoms should diminish with time.
I think David was simply frustrated and decided to make the most of a fairly ambiguous statement from the CDC.
The Minnesota Somali kids are fascinating but I think we need to be realistic. Autism exists in a lot of African countries, including those close to Somalia. No epidemiologist has looked at the Minnesota cluster. The parents are coming from a very bad situation where I would think it would be next to impossible to count many types of disability. Children of those who have undergone ‘traumatic experiences’ are at risk of ’schizophrenia-like’ disorders (http://www.ncbi.nlm.nih.gov/pubmed/17921757).
We have to be careful to scientifically investigate the way autism has developed in these children and not rush to conclusions.
Lisa, I agree with you on the wide range of environmental factors. People should stop and think of everything children and pregnant women are exposed to, such as anesthesia during labor, electromagnetic fields and even dry cleaning chemicals. Why is everyone focused only on vaccines ?
Let’s not forget that Minnesota is one of the few states that allows the school district to term an IEP autism without a diagnosis. Due to this, the autism rates is one of the highest in the Nation, and there’s no way to know which of any child is medicaly diagnosed, or just has a educational IEP termed autism.
Within this major news article is also the idea that Vitamin D is related to these autism rates.
The more inetresting data about this is not as presented by Kirby and the environmental factors but in fact, if only looking at this one ethnic group, where genetics plays a role as opposed to all other ethnic groups for such high autism rates.
Broken Link precisely demonstrates my point. There is NO question that these children need help (All4Ben likes red herring). Let’s addr4ess their needs, instead of using them as the AOA Cabal is doing. Without knowing the prevalence of autism in Somalia, which is impossible to know, the only thing left to do is help them. AoAers want to use them.
Did any one read the articles from the past summer about this? Autism does exists in all countries, but some cultures outright deny autism disorders or any disorder for that matter and Somali-born people are of that culture. If they were still in Africa, they’d never admit their child had autism to anyone.
In Minnesota, children don’t need a medical diagnosis to qualify for autism programs. Schools make their own assessments, which can vary by district which can explain this one school district and a focus on a certain ethnic groups. Also, where MN get’s there autism rates in based on IEP, and the majority of these kids are Pre K aged.
I think it’s time MN changes their polices.
Kev wrote:
“The Minnesota Somali kids are fascinating…”
The Minnesota Somali kids are a tragedy. To view them as a curiosity is unacceptable. These are human beings with lives that will not be lived as they should have been due to the harm that was done to them. Many are severely autistic, and they deserve compassion, respect and dignity.
Lisa, I know you said you’re busy today and did not have an opportunity to dig deeply, but I am still awaiting a statement that already exists from the CDC that is the equivalent of what Mr. Kirby cited, since your post hinges on that. Thank you.
@Mom4truth: What evidence do you have that harm has done to the Somali kids? By whom? I guess it’s easy to just accuse the nameless.
BTW, parents of autistic children should generally be aware of different hypotheses regarding autism, in my view. The most plausible hypothesis that explains the Somali anomaly (assuming there’s one) is maternal stress. I say it’s the most plausible because there’s actual data on this, and because it’s well known that Somali refuges are special in regards to their mental health.
Yes Mom4, I would like to know what evidence you have as well. Do share.
I’m a Minnesota resident who’s actually met with and communicated with the Twin Cities Somali autism parents. They have asked for help from outside their community. Some have requested publicity to expand awareness of their dilemmas.
It’s extremely uninformed for people to engage in cynical conjecture about the motives of Age of Autism’s reporters — who didn’t get involved until asked to do so, months after the story broke in July and August.
Re-read the reporting from those months. The Somali parents witnessed their children’s regression immediately after vaccinations. They want to know why. So should we all, and particularly the CDC.
The Somali parents know what happened to their children. The same thing that happened to mine, to others, years ago. We wish that our pleas had been listened to then. Maybe these children could have been spared the variety of illnesses and disabilities that is stressing their families, already burdened with life in a cold, new country.
An excerpt from MinnPost.com story about the Minnesota Somali children & autism cases(July 24 2008, http://www.minnpost.com/stories/2008/07/24/2687/a_mysterious_connection_autism_and_minneapolis_somali_children)
“A Swedish newspaper published an article last week about that country’s Somali population and its high prevalence of autism. The story described a autism study that focused on Somalis. Doctors hypothesized that the high rates of autism in Somali children born in Sweden is due to the lower levels of sunlight and vitamin D immigrants get in Sweden compared with Somalia, a country near the equator. Dark skin that’s covered up and a diet that doesn’t include fatty fish limits absorption of vitamin D as well, according to the doctors.
And the journal Science published a study last week that linked shared ancestry to autism. (The study was also described in the Times of London.) A Harvard team funded by the National Institute of Mental Health studied Middle Eastern families in which cousins had married each other. In five of those cases, children showed genetic defects linked to autism. Many Muslim Somalis marry their first, second or third cousins, putting them a category suspected to be more at risk.”
I live in MN too. Everyone should read the articles from this past summer before reading Kirby’s ideals. Many are still of their own culture and very few would ever go public using their identities. I’d more guess ideals are brough to them via other people, kind of like the MN recount vote and how people told this group of people how to vote.
The severe autism is based upon the schools opinion. Vaccines make no sense since we’re talking one school district as well, and one ethnic group of people. The Vitamin D theory would make more sense than vaccines does however more importantly, we’re talking about one (1) school district in this state and their Pre K intervention evaluations and their ability to deem a child autistic. MPLS isn’t the only area of a high population of Somali immigrants, either.
I’d also like to know proof of harm to these children, and if there is, my bet is on the school district itself.
MN has the highest autism rates in the nation and it’s not due to we’re al vaccinating more here than any other state.
I think that the thoughtful, thorough, and direst responses to Mr Kirby from the CDC and the MDH represented a vast improvement over what he was able to report on the information presented directly to the Samali families just a week earlier.
Aside from the outrageous character assassinations that have occurred in this thread against the Somalis and those who support them, the most profoundly lacking notion is the stereotypically dismissive statement by FreeSpeaker that: “Without knowing the prevalence of autism in Somalia, which is impossible to know, the only thing left to do is help them.”
“Help them” means different things to different people and can include everything from suspending immigration programs to educating them on how safe they are.
Here is what I see left to do:
-research the heck out of this
-explain what is happening in order to avoid more of the same for the Somali’s.
-explain why schools report rates of 0% in Rochester and 3.15% in Minneapolis compared to a “typical” US autism rate of 0.67% (1:150)
-accelerate the typical pondering response to screaming statistics
-build more autism programs and housing
-train a brigade of ABA teachers
-recommend some local doctors who will address treatable issues
-develop respite programs to help keep families together
-develop additional work programs for adults with autism
-train first responders to use something other than a taser when encountering autism
-develop additional appropriate recreation, social, art and music programs
According to the Minneapolis school data (EC- grade 6) presented in David Kirby’s report, 32 out of 1015 Somali kids are in autism programs, or 3.15%. At a 1:150 rate, you expect no more than 7 autistic kids. Even our CDC could extract some useful meaning in the 4+ fold increase being reported without setting up camp in Somalia if they tried. We should also be asking why autism rates are high for children in Minnesota cities in general. I don’t know what they will find - let that answers speak for themselves.
In Minnesota, children don’t need a medical diagnosis to qualify for autism programs. Schools make their own assessments, which can vary by district which can explain this one school district and a focus on a certain ethnic groups.
Most states do not allow schools to do this without a medical diagnosis. The autism rates are obtained from the educational system and IEP’s deemed autism. MN being allowed to do this, there is no telling which then has a medical diagnosis or just a simple school telling them their child has autism.
That is the number one flaw about this state which is one thing I bet Kirby failed to recognize.
“The Somali parents witnessed their children’s regression immediately after vaccinations.”
There’s my evidence. I believe parents. I don’t believe the “coincidence theory” popularized by the vaccine industry and the CDC, desperate to cover its mistakes.
Anecdotal evidence results in black box warnings on SSRI’s. Anecdotal evidence causes dangerous drugs to be pulled from shelves. Anecdotal evidence can even put a murderer behind bars.
The trivializing of overwhelming anecdotal evidence of vaccine harm has been made possible by the $100 million/yr. lobbying efforts of the pharmaceutical industry.
I’ve never seen a single study that correlates maternal stress with autism. If there is one, it’s insignificant compared to the hundreds that correlate vaccines with autism. I believe what’s observable in a child’s home by the people who know that child best - multiplied times thousands of homes and thousands of children and thousands of parents.
I do not believe the propaganda of the medical establishment that brought us the “refrigerator mom theory,” nor that of wealthy pharmaceutical executives.
And to think - Kirby’s paltry salary has been raised as a reason to doubt him, while Offit earns enough from vaccines for him to compare it to winning the lottery.
Logic seems to evade some, when an agenda is too dear.
mom4truth~ you’re reading this second hand. Unless that very parent speaks up about themselves, all it is is heresay. Somali’s in MN also were convinced and told who to vote for and did as they were told, people take advantage of them all the time which is very wrong. You have no way of knowing from Nancy’s post the real stories of these parents. Many many years ago, this same person attempting to convince me of this as well without knowing all the facts about my child or his medical history.
Be careful in what you believe on the web.
mom4truth
You are right.
The language in the CDC reply to Mr Kirby is stronger than previous statements including those set out by Ms Rudy on this site.
From “scientists think …” to “most scientists agree…” is stronger language in support of the view that a combination or interaction of factors both genetic and environmental are likely causes of autism.
This is an important distinction and the title of this blog comment is simply incorrect.
It is easy to mock theories or hypotheses about potential causes of autism including mercury from various sources, vitamin D deficiencies, etc. etc. etc. until legitimate research is done.
The IOM vaccines and autism report 2004 expressly discouraged such research into a potential link between vaccines and autism. The absence of such research leaves the issue of such links undecided … one way or the other. The attempt to suppress research into possible vaccine autism connections undermines public confidence in official statements about the safety of vaccines and vaccine schedules.
I honestly believe that it’s splitting hairs to say “scientists think” is a significantly different statement from “most scientists agree.” One is a carefully vetted statement including on a fact sheet which is permanently placed on a website. Another is a personal response to a reporter. They were written by different people under different circumstancees.
The point, IMHO, is that no one has or is disputing the possibility that autism is not a single disorder, nor is it caused by any one thing.
My personal guess is that we’ll find a whole constellation of different causes for disorders that look similar but are in fact quite distinct in terms of etiology, symptoms and outcomes.
Mom4Truth, when I said I didn’t have time to dig what I meant was “I’m not going to take the time right now to create a long list of research studies funded by the NIH which look into potential environmental causes of autism, because I am letting one such study stand in for that list.” But the point was that NIH does fund such studies, and has done so over time.
That is not, of course, tantamount to saying “yes, vaccines DO cause autism and we’ve been hiding that information for years.”
Lisa (autism guide)
Mom4 - the plural of “anecdote” is not data. And evidence can be weak, overwhelming, or anything between. The evidence you offer is weak.
Sorry, but tragedy or not, the events surrounding the kids is still fascinating. Trying to play on emotions will not get anyone closer to the truth of what happened/is happening.
I have a co-worker who is an immigrant from a country right next to Somalia and when I asked her if autism existed in her country and amongst the Somalians she knew she looked at me like I was odd and said ‘of course’.
She also said that in *a lot* of African countries one of two things happens regarding developmental disorders. First, the society in question simply doesn’t really make a big issue of it and the children are not counted. Secondly, developmental disorders are treated as caused by evil spirits and kids are taken to shaman/witch doctors and it is a very socially shameful thing so - nobody talks about it.
I seem to recall the anthropologist Professor Grinker mentioning something similar in South Africa.
mom4truth, I understand you are angry for conspiracy theory driven reasons of your own buit the only thing that will get to the truth of what is happening is science. Not the AoA who have a poor understanding of science.
The problem with mom4truth’s “evidence” is not simply that it’s anecdotal. I’d question where the claim comes from, in the first place. Is it documented somewhere? What is the precise basis of the claim? Has it been corroborated?
Mom4Truth says she believes parents, and that’s her evidence.
Obviously, that’s a very different claim from “here’s a citation from the journal of muckety muck.”
In fact, it’s a statement of faith in not only the truthfulness of parents but also in the ability of parents to see a set of circumstances and KNOW what’s going on beneath the surface.
I, too, tend to believe that parents are telling the truth about what they see. I find it much harder, though, to believe that ANYone, parent or non-parent, can actually parse out invisible causes and effects without benefit of research.
In the case of the Somali community, I can easily imagine dozens of reasons why a group of children from a war torn third world country might appear developmentally delayed and emotionally distant when plunked into a huge school district in a major city in the northern part of the US.
The more I learn about this particular situation, the less clear it becomes. Are these kids really “autistic” are or they displaying “autism-like symptoms” as gauged by the school district? Are they suffering from PTSD? Are they suffering from nutritional and/or medical issues? I’m not a medical expert, but I can certainly understand why there are differences of opinion.
Lisa (autism guide)
None of the children within the MPLS school district were born in Africa. They were all born in the USA, probably MN, and they are all Pre K age that is of the higher rates of autism. So the idea of a coming to another country for these children is not it. There’s much to this story that Mr. Kirby left out.
I would tend to believe what parents also say, if they’re speaking about their own child and not other parent’s children and lumping them al into their beliefs without those parents speaking for themselves. That is not evidence. The science is still needed in order to know anything about the Somalians and one also needs to understand just how the school system works here.
“In fact, it’s a statement of faith in not only the truthfulness of parents but also in the ability of parents to see a set of circumstances and KNOW what’s going on beneath the surface.”
Nope, that’s not what I meant. Although that needs to be considered separately, and it’s not necessarily an issue of honesty. If you’ve followed the Cedillo case, you must know what I’m talking about.
But what I actually meant is that the claim was stated in a vacuum. Where does it come from? Did mom4truth overhear it in AoA? Did all parents say this, or did one set of parents say this? Who did they say it to?
If in fact it’s true that all or most of the parents actually gave a statement to that effect, I see no reason why they shouldn’t be taken seriously (even though they could still be wrong, or coached, etc.)
Does Mom4Truth also believe parents who say the symptoms of autism did not appear “soon after” vaccination?