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Why a Twin Study Shouldn't Rock the Autism World

By July 9, 2011

As is often the case, a single well-publicized autism-related study has become a nine days wonder.

Recently, a study looked at 192 California twins to determine whether the rate of autism in identical twins is far higher than that in fraternal twins (as would be expected if autism is a mostly genetic disorder).  This particular study, published in the Archives of General Psychiatry, found fewer identical twins share autism than expected - and a higher number of fraternal twins share autism.  The study is unusual in this finding, since prior studies have found precisely the opposite.

Based on this study, of course, many autism groups are announcing that the idea of "autism as a genetic disorder" has been debunked.  Now, they say, we KNOW that it's all in the environment.  What's more, they say, we're finally overturning the holy grail of genetics - the belief that all autism is inherited.

This morning, an NPR interview with Martha Herbert of Harvard seemed to be leaning in the direction of saying something like "since we now know autism is not a largely genetic disorder, we should be looking again at pesticides, plastics and flame retardants as the cause of an epidemic."

I don't believe any of this holds much water.

First of all, virtually no one has been saying "all autism is inherited."  The CDC, NIH and other mainstream organizations have long supported the idea that autism is linked both to genetics and environment - and they have been saying so for years.

Secondly, "genetics" does not necessarily mean "inherited DNA."  In fact, studies have been coming out for years that say many cases of autism are linked to spontaneous mutations - meaning genetic differences that occur in an individual which are not inherited from a parent.

Thirdly, it seems extraordinary to me that twins who gestated in the same womb, were born under the same circumstances, raised in the same home, ate the same foods, were exposed to the same lawn and pet chemicals, drank from the same bottles, went to the same schools, underwent the same vaccinations and were fed the same cough medicines could be said to have been raised under different "environmental" circumstances.  In fact, though, every single environmental "culprit" pointed to by Herbert (or anyone else, including those who believe that vaccines are to blame for an autism epidemic) would be the same for children of the same age raised by the same parents in the same household, unless some outstanding circumstance took one child into a new setting or exposed one child to something unique (eg, twins separated at birth).

Fourth, it is unclear why this particular study's findings were different from those of prior studies.  It will be interesting to learn more about this.  So far, so far as I know the study has not been replicated.  Earlier  studies, of which there have been quite a few, seem to suggest that autism is an extremely heritable disorder.

Herbert also made an interesting point on the radio.  Asked whether autism is truly on the rise, she responded that a very significant number of new autism diagnoses could NOT be attributed to changes in diagnostic procedure, awareness, new diagnostic criteria, etc.  I found this to be an interesting statement since, so far as I know, there is no general agreement on the percentage of "real" as opposed to "apparent" rise in autism spectrum disorders.

More significant, with the new diagnostic criteria (the DSM 5) coming out in two years, the autism spectrum will once again be redefined.  According to one preliminary study, a very large percentage of those children now diagnosed with PDD-NOS (which accounts for more than 50% of children with an ASD diagnosis) will no longer quality for an autism spectrum label, but will likely receive a different, non-autism label.  I will be fascinated to see whether the world will hail a sudden decline in autism spectrum incidence as of May, 2013.


Comments
July 9, 2011 at 9:32 am
(1) Harold L Doherty says:

Actually the largely genetic theory of autism was debunked years ago when Simon Baron-Cohen observed, on more than one occasion, that even with identical twins the fact that one has autism does not always mean that the other twin will also have autism.

The emerging paradigm has for several years been based on the premise that autism results from gene environment interaction. The US Senate Committee on Environment & Public Works Subcommittee on Children’s Health held a hearing entitled, “State of Research on Potential Environmental Health Factors with Autism and Related Neurodevelopment Disorders”in August 2010.

What is remarkable is that, despite the overwhelming share of autism research dollars given to genetic focused autism research, a fact acknowledged by Dr. Insel of the IACC, there has been so little progress in finding specific genetic bases for autism.

The attempt to redefine autism in the DSM5 which may add yet more very high functioning persons to the “spectrum” and remove intellectually disabled persons with autism from the spectrum may well confuse research more but it is too late. The genie is out of the bottle. The “it’s gotta be genetic” grip on autism research and funding described by Teresa Binstock over a decade ago is loosening. Eventually we will uncover the various environmental pollutants and toxins that are causing neurological harm to children in their prenatal and early postnatal development periods.

July 9, 2011 at 9:47 am
(2) autism says:

Harold – after reading what you said earlier about “removing people with intellectual disability from the autism spectrum” and looking at the DSM 5, I did specifically ask about that issue.

There’s no doubt that the wording is unclear in the new criteria. Apparently, though, there is no such intent. Rather, as I understand it, the desire is to ensure that intellectual challenge is accompanied by specific autistic traits before autism is diagnosed, since intellectual disability can also come along with a variety of non-autistic issues related to speech and social interaction.

What I don’t understand about the whole “autism is an environmental epidemic” argument is – let’s say that everything in our manmade environment, from cell phones to plastics to coal pollution is causing neurological damage that looks like autism. In addition, let’s suggest that poor maternal nutrition, too little vitamin D for kids, etc. are all culprits.

If that’s the case, then autism should not be on the rise, since issues like air pollution and poor nutrition were WORSE 100 years ago than they are now – and even middle class women drank and smoked their way through pregnancy 50 and 60 years ago.

What’s more, such a theory suggests that exposures to various environmental elements and toxins would result in similar “autism-like” symptoms in just about everyone. But that’s obviously not the case. Not only do only some people respond to such exposures (suggesting genetic susceptibility), but people also respond differently to similar exposures.

Lisa

July 10, 2011 at 2:25 am
(3) Twyla says:

That is a very good question, Lisa. If primarily caused by environmental toxins such as air pollution and water pollution, why has the rate of autism increased so much over the past 25 years? Why was the rate so much lower in the 60′s even though some areas had worse pollution than now? This is one reason why many believe that vaccines are really the primary factor. The number of vaccines has increased dramatically during the same time period during which autism has increased.

However, most people I know who believe in vaccine causation also believe that genetics play a role. Obviously not every vaccinated child becomes autistic. And we believe that environmental toxins also play a role, including the increasing amount of mercury in the environment.

At the same time, if autism were strictly genetic, why are there so many children with autism these days who are the first full blown case of autism in the family? Yeah, maybe Mom or Dad or a grandparents, uncle, or aunt may have a bit of aspie characteristics, but not full blown autism, not nonverbal or stimming etc.

July 10, 2011 at 12:28 am
(4) brian says:

Harold L Doherty wrote: “Actually the largely genetic theory of autism was debunked years ago when Simon Baron-Cohen observed, on more than one occasion, that even with identical twins the fact that one has autism does not always mean that the other twin will also have autism.”

Ah, well then either Baron-Cohen doesn’t understand genetics or you misunderstood Baron-Cohen.

Identical twins are not truly identical and are not genetically identical. Discordant monozygotic twin pairs do not prove that a condition does not have a genetic basis. Monozygotic twins differ, for example, in the number and position of copy number variations generated after the first cell divisions following fertilization. Moreover, MeCP2, which is expressed at abnormal levels in the majority of the brains of individuals with ASD thus far examined, is involved in suppression of LINE-1 transposition. Since LINE-1 sequences comprise about one-fifth of the human genome, and these repetitive sequences readily recombine and change the genetic material in cells if their movement is not suppressed by MeCP2 (as shown recently in Rett syndrome), in the absence of suppression it seems that somatic mosaicism must arise in neural tissue—which is not necessarily a good thing, and which should further differentiate monozygotic twins. Nobody who understands genetics beyond the level of high school biology should expect 100% concordance in twin studies, and the absence of 100% concordance does not suggest that a condition.

July 9, 2011 at 9:40 am
(5) Rachael says:

One of the near-universal characteristics of autism is introversion, but this personality trait alone cannot explain the tremendous increase in autism cases in the past few decades. In 1883 the CDC Mandatory Vaccine Schedule was only 10 shots with a total of 30 vaccines by 6 years old. In 2010 the CDC Mandatory Vaccine Schedule now includes 36 shots with 109 vaccines by 6 years old; over 300% increase. The autism rate is now one in 110 compared to one in 10,000 in 1983. The genes that make you more vulnerable to develop an autoimmune disease, which in some may very well be introversion, sensitivity and giftedness; and for some the vaccine trigger. The way the brain is wired in introverts is different than in extroverts. This can be seen on brain scans as far more frontal lobe activity.

July 9, 2011 at 9:48 am
(6) autism says:

Rachael – I certainly agree that “introversion” is not the same thing as “autism!”

But that reality, combined with an increased vaccine schedule, is not really a helpful way to determine whether, to what degree, and why there may be an autism epidemic.

Lisa

July 9, 2011 at 10:13 am
(7) Rachael says:

Lisa: Perhaps, it is this specific personality trait and the way the brain is wired, that is responsible as to why genetics plays a role in autism; the genes for introversion and for some the vaccine trigger (from introvert to autistic). Perhaps, stimulation of the immune system, in an introverted child causes them to be more susceptible to develop autism. Since, vaccines are designed to cause an immune-response, repeat vaccinations may play a role in the sensitive child. Without repetitive vaccinations, the sensitive, introverted child may have grown up to be a happy, healthy, intelligent introverted adult, like many of their parents.

July 9, 2011 at 10:01 am
(8) Rachael says:

Dr Andrew Wakefield’s retracted Lancet study from over a decade ago ( the one that started all the controversy about the MMR vaccine) suggested that there was a genetic predisposition to autistic spectrum disorders and an environmental trigger – in this case study the MMR vaccine

“A genetic predisposition to autistic spectrum disorders is suggested by over-representation in boys and a greater concordance rate in monozygotic than in dizygotic twins.”

“We identified associated gastrointestinal disease and developmental regression in a group of previously normal children, which was generally associated with environmental triggers.”

Ileal-lymphoid-nodular hyperplasia, non specific colitis, and pervasive developmental disorder in children.’ The Lancet 1998 A J Wakefield, S H Murch, J A Walker-Smith

http://www.vaccinesafetyfirst.com/pdf/LANCET%20pdf.pdf

July 9, 2011 at 10:14 am
(9) barbaraj says:

I don’t think anyone is denying a strong genetic susceptibility, but as the epidemic moves along, it’s picking up more and more victims, which suggests the genetic influence may well be “just being human” one day. Certainly we don’t see the yards and fields along our same polluted highways littered with spinning cows, or rocking dogs!

July 9, 2011 at 10:05 am
(10) barbaraj says:

I love how Rachael put this, “. The genes that make you more vulnerable to develop an autoimmune disease, which in some may very well be introversion, sensitivity and giftedness; and for some the vaccine trigger” …Yes, before autism many of the children in our family were considered shy and gifted, not disabled!

Thank you Harold, yet some continue to suggest this is “one study” that hasn’t been replicated in effort to deny the truth a while longer!
Harold L Doherty(1)
Actually the largely genetic theory of autism was debunked years ago when Simon Baron-Cohen observed, on more than one occasion, that even with identical twins the fact that one has autism does not always mean that the other twin will also have autism

This study is important, it should colide head on and defeat the idea that we are in the midst of a genetic epidemic.

Sure we have narrow ideas when it comes to environmental exposures. Often we think only of the smoke wafting from industrial stacks, or we move right to our persoanl suspects, the vaccines. The environment can and has turned deadly for newborns , from diaper dips to hexachlorphine washes, we have killed and damaged many through bad “science” practices of the past. Likely many of us know what the bad “science” has done these last tweny years, and it needs to be stopped. The spewing of toxins needs to be cleaned up as well, poisons such as mercury aluminum etc. are dangerous to our babies no matter the route of exposure.. inhaled, ingested or injected.

I hope this study causes a shift in thinking , more importantly a shift in the way research funds are being spent.

July 9, 2011 at 11:50 am
(11) autism says:

Barbara – I don’t think anyone has suggested that “we’re in the middle of a genetic epidemic.” Nor do I think anyone has said that the environment couldn’t play a role in autism.

Here are some of the things that HAVE been suggested:

1. we’re not in the middle of an epidemic at all; rather we have moved the goal posts in the middle of the game, resulting in a significant change in “scoring” for autism.
2. we’re seeing a rise in autism due to a combination of genetic and environmental factors
3. we’re beginning to better understand how inborn differences in brain structure and function impact behavior and communication
4. we’re better understanding how genetic mutation can impact issues like behavior and communication
5. autism is highly heritable
6. we’re zeroing in on some specific causes of autism, along with associations with things like parental age, specific drugs, etc.

Lisa

July 9, 2011 at 11:05 am
(12) HappyMomofTwoGirls says:

As a mother of two girls on the autism spectrum, I feel I must comment. First of all, Lisa, thank your for always thoughtful, reasonable, and well-researched pieces. As far as the study, it further discredits the vaccine theory. It proves that fraternal twins are more likely to both have autism than just ordinary siblings. Since siblings are raised in the same house, the only thing that fraternal twins have that is different from them is sharing the same womb. Therefore, whatever the environmental factor is, it is happening prenatally, not during infancy. Otherwise, all siblings would show the same rise in incidence. But the study showed, again, that fraternal twins are more likely to both have ASD.
Furthermore, this does not discredit genetics, as fraternal twins have many genes in common, just not identical. And we know autism runs in some families, like mine, and not in others, and most families do get vaccinated. So genes are a factor as the research is definitely showing. I know the anti-vaxxers won’t give up because for some reason they are in love with that theory the way the birthers will never believe our fine president is American. But it is wrong that they persist in claiming autism as their issue, insist their superior genetics could never have created it, tell people not to vaccinate, and recommend Lupron, chelation,etc. They scream the loudest, say nothing, and get all the attention. When will other parents like myself stand up to them and ask researchers and government to do what we need: find therapies, help our children gain acceptance, and fund programs. I have two girls with autism, my genes must have partially caused it, I accept that because I am, like everyone else on this planet, imperfect. By the way, my girls are the most wonderful people I know.

July 9, 2011 at 11:55 am
(13) Rachael says:

“I know the anti-vaxxers won’t give up because for some reason they are in love with that theory the way the birthers will never believe our fine president is American.”
*****************
Vaccine promoters are always trying to belittle those who don’t share all of their pro-vaccine views. They love to interpret something in a manner in which it was not intended to be understood, often deliberately. How many times can pro-vaccinators bring up Jenny McCarthy, moon-landings, aliens and such? Do you think this stratagem of putting people down works to accomplish anything? Yes, we know, we’ve heard it all before, its the parents who are stupid, uneducated and misinformed and they read stuff on the internet. None of them went to college and they don’t know what they are talking about. However, the opposite is true. The parents who have chosen to research the issue and read both sides of the argument in depth, often decide not to vaccinate, or to choose only some vaccines and not others, or not to keep vaccinating over and over again are usually well-educated. Being called stupid hasn’t worked so far to shut parents up with legitimate questions about the safety of vaccines; parents who witnessed their healthy child become ill after receiving a vaccination. So, if you pro-vaccine people are really looking for ways to encourage an open dialogue about vaccines and their safety with those who are somewhat skeptical and have good reason to be so, you’d be wise to take a different approach. This one is definitely not working!

July 9, 2011 at 7:03 pm
(14) Sam says:

It is just sad that the anti-vaccine people continue to put kids at serious health risk for preventable diseases. With no scientific proof whatsoever of any link between vaccines and autism and a belief that borders on conspiracy theory, these people frightening parents into foregoing vaccines and are causing the US rates of tuberculosis and many other disease to rise. It is just sad. You are also causing money to be wasted on study after study about vaccines and autism –a theory started by tiny, fraudulent study published by a discredited doctor. There is no reasoning with you because you have no science to back your theories up. A story here, a story there of a child suddenly getting autism after vaccinations, but when experts look at early home videos of those same kids, they see the telltale signs long before the vaccinations were ever given. No approach with dealing with the anti-vacciners will ever work. It is their religious faith regardless of the facts.

July 9, 2011 at 11:10 am
(15) Rachael says:

“The National Autism Association (NAA), along with several other advocacy organizations and thousands of families nationwide, has consistently pointed out that a purely genetic “epidemic” isn’t possible, and that environmental factors including vaccines must be examined more closely to find the causes of autism so that new cases can be prevented and existing cases treated. “This is further evidence that we have to stop siphoning scarce autism research dollars to search for elusive autism genes,” said parent and NAA board chair Lori McIlwain. “Blaming genetics has gotten us nowhere. With one percent of our nation’s children affected, we must focus on autism research that will lead to better treatments in the shortest amount of time possible.”

http://www.prnewswire.com/news-releases/new-study-confirms-role-of-environment-in-the-development-of-autism-125216624.html

July 9, 2011 at 11:25 am
(16) autism says:

The National Autism Association has a very specific agenda. it has always been dedicated to the idea that vaccines cause autism.

Citing NAA or Age of Autism or Safeminds, etc. as supporting the idea of vaccines as “the” cause of autism” is like citing Ralph Nader on the importance of consumer protection, or Al Gore on the reality of climate change.

You already know what you’re going to hear before you ask. If you already agree, you agree. If you don’t, you don’t. Period.

July 10, 2011 at 2:56 am
(17) Twyla says:

If you think you already know what you are going to hear and therefore you don’t listen, you have become narrow minded.

Yeah, NAA has an agenda. “The mission of the National Autism Association is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.”
http://www.nationalautismassociation.org/mission.php

Would you listen to Albert Einstein talk about the theory of relativity or Martin Luther King talk about civil rights, or do you think that they had an agenda and were predictable?

Should everyone who is passionately devoted to a cause be ignored?

I guarantee you, you did not know what would be published on Age of Autism this week (or any week). They constantly put out new information from a variety of sources.

July 9, 2011 at 11:36 am
(18) Rachael says:

Vaccines may not be the cause of autism in all children and I’m sure there are other genetic and environmental factors involved in, but “in recent years, a growing number of parents around the country have reported sometimes quite rapid loss of social, language, and behavioral skills in their healthy children following the receipt of vaccines, many of which are given simultaneously during “well baby” check-ups. Following the current schedule, children will receive 49 vaccines by the time they reach kindergarten. The safety of giving simultaneous vaccines, and the cumulative health effects from vaccines have not been adequately studied, yet federal health agencies and most in mainstream medicine attribute regression following vaccination to coincidence.” a purely genetic “epidemic” This is the reason that all environmental factors including vaccines must be examined more closely.

July 9, 2011 at 12:24 pm
(19) barbaraj says:

Clearly someone wants to hide something. How easy would it be to randomly check newborns dna at the moment of birth, before vit k, eye salve and hepb, and find that either mutations occur after immunization creating this susceptibility or they don’t. It seems easier than a vax’d vs unvax’d study. I agree these dna changes play in, but it’s a big ‘whoooa” when neither parent shares this genetic material.

July 9, 2011 at 12:31 pm
(20) Sandy says:

I’m not sure why the study would rock anyone. It certainly doesn’t at all point to the cause(s) of autism, let alone vaccines being it.

If we want to go with pro and anti- it was actually not a pro who brought up vaccines first and the amounts or even Wakefield. No one parent has the right to ‘tell people not to vaccinate, and recommend Lupron, chelation’ and so on, yet you see it on this blog often enough and just recently as well. If one is not a doctor, they really have no right at all to suggest medical avenues. It’s also unfair to say those ‘The parents who have chosen to research the issue and read both sides of the argument in depth, often decide not to vaccinate, or to choose only some vaccines and not others, or not to keep vaccinating over and over again are usually well-educated’ I am quite sure many research their choices and do vaccinate but those who didn’t blame the doctors for their choices. The numbers of vaccines also keep going up. In comment 3 it’s ’36 shots with 109 vaccines’ and in comment 14 it’s ’49 vaccines’. This is the ever conflicting info about vaccines on forums.
One question no one rarely answers is why, with that ever ‘changing’ number of vaccines, don’t all who follow the same schedule have autism? Why does autism effect more boys than girls?

July 9, 2011 at 12:50 pm
(21) HappyMomofTwoGirls says:

Barbara,
First of all, according to the latest studies, there are hundreds of genes that contribute to autism, so there is no way to perform a DNA test at birth. We haven’t learned nearly enough to do that. And the suggestion just reveals that you haven’t done your research.
And Rachel, I don’t know how you could possibly claim to know you don’t have any genes that could cause autism when we still don’t know what all of those genes are. They may be linked to depression, anxiety, and host of other issues. Also, as Lisa pointed out, perfectly normal genes can mutate during fetal develop into something else due to an environmental cause. However, our kids genes do not do this during out lives unless you are raising your children in Chernobyl. Very few factors can cause a gene to mutate after a person is born. Research gene mutation. They mutate as they develop in the womb.
And I am so tired of being called an imposter and pharma shill because I disagree with you at Age of Autism. I am a parent and I read and research. I never said those who are anti-vaccine are not smart. I just think they are angry and more interested in blaming someone because they cannot accept the children have. And when you call a child vaccine-damaged and injured, that speaks volumes about how you feel about your child. Speaking of environmental antigens, having a parent view you as so damaged has gotten to be one of the most damaging environmental factors of all.

July 9, 2011 at 4:54 pm
(22) Rachael says:

“I just think they are angry and more interested in blaming someone because they cannot accept the children have. And when you call a child vaccine-damaged and injured, that speaks volumes about how you feel about your child.”
************
Give me a break! All pharmaceutical products, including vaccines, carry a risk of harm. Just as individuals can react differently to prescription drugs, some people are at greater risk than others for adverse responses to vaccination that can lead to chronic illness and disability, or even death. We are not all the same and are all subject to different illness and medical conditions. The truth is vaccines have side affects, like all medical products. The almost total denial of vaccine risks for the past three decades by vaccine manufacturers, health and government officials and the MSM operating the mass vaccination system is the reason why more and more parents today question and mistrust the “ever-increasing” vaccine schedule.

It’s not just autism that has become epidemic, but also chronic fatigue immune dysfunction (CFIDS), fibromyalgia, lupus, Guillain-Barré, Crohn’s disease, rheumatoid arthritis, type-1 diabetes, and other autoimmune related disorders. Besides an autism explosion, their is attention deficit and hyperactivity disorder, severe allegies and several vaccine-linked cancers including lymphoma, leukemia and sarcoma. Instead of epidemics of measles, we have epidemics of chronic autoimmune and neurological disease.

July 9, 2011 at 5:45 pm
(23) Sandy says:

“It’s not just autism that has become epidemic, but also chronic fatigue immune dysfunction (CFIDS), fibromyalgia, lupus, Guillain-Barré, Crohn’s disease, rheumatoid arthritis, type-1 diabetes, and other autoimmune related disorders. Besides an autism explosion, their is attention deficit and hyperactivity disorder, severe allegies and several vaccine-linked cancers including lymphoma, leukemia and sarcoma. Instead of epidemics of measles, we have epidemics of chronic autoimmune and neurological disease.”

What are the causes for that list of medical issues? And how would any of those even relate to the blog topic of autism? We also know from a recent study, nearly one million were misdiagnosed with ADHD, with an estimated $320 million to $500 million is annually spent on ADHD treatments for children who inappropriately received the diagnosis. It’s hard to put accurate figures to epidemics when there clearly is a large margin for misdiagnosing.

July 9, 2011 at 12:57 pm
(24) HappyMomofTwoGirls says:

PS We bring up Jenny McCarthy because she has made a fortune from the desperation of parents. She is now hawking a line of environmentally safe baby products. Guess my baby’s Gerber onesies were made of Krypton.
Pharmaceutical companies make 2% of their profits from vaccines. Ironically they always continued vaccine research because it was the one thing they did for the public good, not for money. It was the work they were proud of for the right reasons. They did it to bolster the public trust.
Now when you are talking about the Geiers of the world who keep trying to patent dangerous procedures to make money off of parents, like Lupron – chemical castration, that is where I see people with dollar signs in their eyes. Same for those selling hyperbaric oxygen chambers and hundreds of dollars worth of “necessary” supplements from a company which Jenny and Dr. Kartzinel recommend and coincidentally own. That is deception and that is wrong.

July 9, 2011 at 5:06 pm
(25) Rachael says:

“The global market for human vaccines in 2008 was $18.7 billion and, with a continuing increase in the global market, reached $21.2 billion in 2009. This market is expected to rise at a compound annual growth rate (CAGR) of 19.6% to reach $58.6 billion by the end of 2015.”

http://www.bccresearch.com/report/PHM014D.html

July 10, 2011 at 3:21 am
(26) Twyla says:

HMofTGs, now you are being ridiculous! Pharmacy companies make vaccines out of the goodness of their hearts? Lupron is irrelevant to this discussion, just an excuse to throw around random slurs. Supplements benefit many with autism tremendously.

July 10, 2011 at 12:15 pm
(27) Sandy-2000 says:

Vaccines is also irrelevant to this discussion. I find it hard to believe now 2 people get away with name- calling.

July 9, 2011 at 1:31 pm
(28) barbaraj says:

HMTG ‘And the suggestion just reveals that you haven’t done your research.”
No, to the contrary, science isn’t stagnant and one shouldn’t bore with personal attacks when one has no answers.

July 9, 2011 at 1:50 pm
(29) Sandy says:

It’s not an attack. They don’t even have a DNA test for autism or mutations related to it for the general to begin with. Comment 15 suggests easily randomly check newborns dna/ mutations , except for one thing. They don’t know yet what the susceptibility is and just what of that would then cause triggers. So it would appear science still needs to do research and there is no easy newborn DNA test.

July 9, 2011 at 1:59 pm
(30) HappyMomofTwoGirls says:

Barbara,
It was not intended as a personal attack. I am sorry if I sounded too harsh. I guess I am have just gotten used to being blunt because I have been so bullied at Age of Autism. When I see someone is anti-vaccine, I associate them, maybe unfairly, with that website that has called me a host of vulgar names. Again, sorry. I just wish we could all get off the vaccine thing, which is proved false time and again, so we could get on with helping our kids in meaningful ways. Every vaccine study costs millions that could be spent in assorted other ways to help my girls, and other kids with ASD. But unfortunately, it seems the anti-vaccine folks will never let it go until we know once and for all the causes of autism. But I am not sure they will even believe then, if it involves looking at their own genes as part of the cause.

July 9, 2011 at 5:31 pm
(31) Sandy says:

The study itself never mentioned vaccines, and I too wish every study didn’t have to be turned into a vaccine issue.

from the study: “we hypothesize that at least some of the environmental factors impacting susceptibility to autism exert their effect during this critical period of life. Nongenetic risk factors that may index environmental influences include parental age, low birth weight, multiple births, and maternal infections during pregnancy. Future studies that seek to elucidate such factors and their role in enhancing or suppressing genetic susceptibility are likely to enhance our understanding of autism.”
I wonder why topics aren’t going on of the environmental factors the study at hand does hypothesize about? They’re just as valid a trigger as anything else is.

July 10, 2011 at 3:25 am
(32) Twyla says:

HappyMomofTGs, you were never called vulgar names at Age of Autism. And you were more attacker than attackee there.

July 9, 2011 at 2:02 pm
(33) HappyMomofTwoGirls says:

PS As far as increase, I work as a teacher in a district which graduates over 900 kids a year. I have worked in education for over 12 years. I have not seen an increase in the kinds of severe cases so often mentioned at Age of Autism, just more kids being diagnosed with Asperger’s and PDD. There may well be more cases, but not the crazy volume so often discussed. And much of it may be due to more kids being classified as ASD. I think now many kids, formerly classified as Cognitively Impaired (MR) are now more accurate described as having severe autism.

July 10, 2011 at 3:29 am
(34) Twyla says:
July 9, 2011 at 2:05 pm
(35) Anne McElroy Dachel says:

With millions of dollars going into genetic studies, the public has gotten the idea that autism is something that just happens, whether it’s inherited genes or spontaneous genetic mutation.

In 2008, Dr. Bernadine Healy was on CBS Evening News saying that we can’t say vaccines don’t cause autism because we’ve never explored the possibility that there is a genetically susceptible subgroup of children who may be harmed by vaccines. We’ve never studied the kids who were healthy until they received certain routine vaccines. Regression following vaccination is a common factor for many autistic children. Doctors and officials have discounted this as mere coincidence. When are we going to do what Dr. Healy advised and study the kids who got sick?
http://www.cbs.com/cbs_evening_news/video/?pid=1XF9NJ7NawCc_as494UTjWE69yLWT6w1

Anne Dachel
Media editor: Age of Autism

July 9, 2011 at 2:08 pm
(36) Anne McElroy Dachel says:

It’s amazing that there are still those who claim that there is no epidemic of autism. Pretending that changing the definition and “better diagnosing” by doctors is behind the exponential increase makes no sense. Where are the adults with autism like we see in our children, especially adults with classic autism, whose symptoms are undeniable. I can go to spec ed rooms in local schools and find kids who are non-verbal, hand-flapping, and rocking back and forth. I can’t find a similar number of adults like this in nearby nursing homes.
Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) created by Congress to deal with autism, has said that 80 percent of Americans with autism are under the age of 18 and he warned that we need “to prepare for a million people who may be in need of significant services.” Nothing is being done to prepare for the approaching tsunami of dependent adults that will descend on social services in the coming years. The IACC now calls autism “a national health emergency.”

In 2006, Harvard researcher Michael Ganz found that lifetime cost for ONE INDIVIDUAL WITH AUTISM is $3.2 million. Others put the cost at between $5 and $10 million PER PERSON. It’s frightening to think about what will be there in the near future for the autism generation as they age into adulthood and parents can no longer care for them. We need to be addressing autism as a national crisis.

Anne Dachel
Media editor: Age of Autism

July 9, 2011 at 2:36 pm
(37) jodifla says:

Anne, of course there are adults with autism. Most were considered mentally handicapped instead of autistic. They now live largely in group homes when they closed the big institutions that once housed them.

As for your alleged autism epidemic, it includes, unfortunately lots of NON autistic kids like my son who have a severe language impairment instead. I know of countless parents whose kids were put “on the spectrum” in a 20 minute session only to have that Dx go away as they got older and their language came in.

Again, the epidemic you insist upon is a false creation by the unfortunate DSM that added PDD-NOS and Asperger’s, without really publicizing and making clear the severity levels needed to get those Dxes.

July 9, 2011 at 3:00 pm
(38) Sandy says:

Also, any adult with any disability, not just those with ASD related disorders, have no where to go. They do live in assisted living group homes or largely stay at home.

July 9, 2011 at 10:20 pm
(39) mary says:

Go to a group home. I guarantee you’ll see plenty of people with classic autism, even if their diagnosis doesn’t label them as such. I serve on the board of directors of a charity servicing adults with cognitive impairment, and there’s a lot of obvious autism in our community. I can see why the average citizen wouldn’t see it, but it’s mainly because they do not know where to look.

That said, you’ll see less obvious signs as kids get older, because many of these kids become less severely affected with age and maturity. My son knows how to talk at age six. He did not at age four. He no longer spins around or spends nearly as much time rocking or hand flapping. At some point he may adapt to find more socially acceptable stims and learn to mimic a lot of typical social behaviors like small talk and eye contact. I do not know what his future holds, but I do know Temple Grandin didn’t talk when she was four, either.

It’s good to prepare everyone for lots of adults – with autism labels – who will need specific supports and lifelong services. I think it’s in the best interest of all our children to emphasize that they’ll still be autistic when they’re adults and find ways for them to work and integrate with the community. However, don’t mistake this new awareness of autism for a true epidemic. The evidence is simply not there.

July 10, 2011 at 12:58 am
(40) Sandy-2000 says:

That is a very good point. The epidemic flood of children about to turn to adults with autism is leading everyone and the public to believe intervention does not work. That children with autism do not progress and have no hope of ever having a job (even though in the news high profile national companies are hiring those with disabilities including those with autism) and remain as severe as when they were first diagnosed. Some states, such as my own has great services for adults of all disabilities including autism. The thing is, is someone has to make it happen and if a set of parents could make that happen here in the 1970′s and it’s still going strong, we as parents could do the same thing in other states. All depends on where one wants to put their energy and money, or wait for someone else to do it.

July 9, 2011 at 2:10 pm
(41) Anne McElroy Dachel says:

Stories about young adults with autism who have nowhere to go are out regularly all around the U.S. This is the real autism crisis.

June 17, Bridgeport, CT
http://www.acorn-online.com/joomla15/thebridgeportnews/news/localnews/96925-idea-center-adults-with-autism-find-support-and-opportunity.html

“What happens when children with autism become adults? Families of adults with autism face that intimidating question every day.
“The reality is that few services are available to assist adults with even mild autism, and even fewer opportunities for them to further their education, work and socialize; in short, to live full, productive lives.”

?Jul 3, New Jersey, http://www.mycentraljersey.com/article/20110703/NJNEWS/307030019/Construction-begins-on-housing-in-Warren

July 4, Allentown, PA What Happens To Adult Children With Autism? http://www.examiner.com/special-needs-kids-in-allentown/what-happens-to-adult-children-with-autism

“Housing for developmentally disabled adults is at a crisis stage, according to Mount Bethel’s leaders, with thousands of New Jersey families on waiting lists for group-home placements.”

“This is a question all parents of children with Autism ask themselves every day. There are minimal services available and the ones that are available cannot support all of these adults. What is a family to do?”

Anne Dachel, Media editor: Age of Autism

July 9, 2011 at 2:19 pm
(42) autism says:

Thanks for the comment on adults with autism, Anne. You’re right: it’s a huge issue. While some organizations and foundations are stepping up to the plate to provide services and resources, there’s a VERY long way to go.

Lisa

July 9, 2011 at 3:12 pm
(43) HappyMomofTwoGirls says:

Anne, as you point out that clip by Dr. Healy was three years ago (2008), before Wakefield’s study was exposed as fraudulent. She is no longer the head of NIH, and I think her remarks in that clip are no longer true or relevant given that the subsequent weight of research has found no link between vaccines and autism, and also since the genetic research, like this current study, points to prenatal factors affecting our kids. Also, why do the people at Age of Autism, like yourself, not allow for other theories or other points of view, if you are indeed looking for the truth? Unless you are willing to at least entertain the possibility that the vaccine link was a dead end, you will never be able to see the possible truth in other theories and results. I initially went to your website because I had read Kim’s book and felt I had a lot in common with her, as a mom of girls. I had not formed an opinion on the vaccine issue. However, whenever I asked a question at Age of Autism, I was insulted, derided, and told to go away, which I ultimately did. I then investigated on my own, and made my own decision. Will you Age of Autism ever open up to other points of view? If not, how can you claim any credibility as people looking for truth?

July 9, 2011 at 4:57 pm
(44) barbaraj says:

Wakefield was correct, it’s only a matter of time before that expose’.
I never suggested there was a dna test for autism, I suggested an easy way of looking would be to take a sample, a swab, if the child develops autism there would be a baseline of genetic information to compare. There are genotoxins , we do not know how they interact, don’t act or act in synergy, if they compound or counter, we don’t know but that doesn’t mean we should pretend they only exist in rare situations such as chernobyl.
When the “environment” is considered, it isn’t all baby bottles and lawn care, there are many differences, in one day there are dozens ,from who is in your arms when you answer the phone, who chewed the rattle, to who was ill, who was well.( and yes that does get into differences in timing for drugs as well as vaccines) If we are to ignore vaccines as a major contributor to autism we would be lying and denying the truth experienced by so many families.
And, as a mom of six, I do take offense at being called anti-vaccine, I paid my dues, my children are injured, this is not a political stand this is a health issue.

July 9, 2011 at 5:38 pm
(45) HappyMomofTwoGirls says:

Barbara,
I respect your opinion. What do you make of all the studies that cannot find the link or replicate Wakefield’s results? And what about his medical license being revoked? He tripped himself up – no conspiracy. He played fast and loose with the rules because he wanted to be right. I do not believe in conspiracies as a rule. Human beings are far too sloppy and talk far too much.
Also, what of all the crazy treatments? Chelation cannot work because mercury damage to brain cells is irreversible. I just think there is such a thing as truth, and it cannot be based on personal anecdotes no matter how compelling. I respect someone’s feelings about their experiences, but that does not mean I have to agree with their conclusions.
Finally, will you admit at least that the study which was the start of this topic puts to in utero, prenatal environmental factors which would seem to sway the conclusion away from vaccines? Or is the post now moved from vaccines are a cause, to vaccines are the cause? At any rate, scaring people about vaccines with no scientific proof is being anti-vaccine as I see it. And already babies too young to be vaccinated are dying after being exposed to illnesses in older kids whose parents won’t vaccinate. It is not a harmless position.

July 10, 2011 at 3:43 am
(46) Twyla says:

This study points to environmental causes, which could be prenatal or postnatal. There is nothing here indicating that the exposures are prenatal, except for a comment that they might be prenatal.

Regarding Dr. Wakefield, the GMC hearings were a travesty of justice. I would post several links, but my comment will be held up if I post more than one. This one has links to a number of articles.
http://www.wesupportandywakefield.com/

Your continuing use of the term “anti-vaccine” shows your bias.

July 10, 2011 at 8:14 pm
(47) brian says:

Twyla wrote: “This study points to environmental causes, which could be prenatal or postnatal. There is nothing here indicating that the exposures are prenatal, except for a comment that they might be prenatal.”

Well, no.

First off, the authors have noted that the shared prenatal environment is much more similar than the shared postnatal environment. They’ve made it quite clear in recent interviews that they very clearly believe that the effects are due to prenatal influences, and they noted that even in early infancy twins encounter increasingly varying environments.

One very good reason that they emphasize the prenatal environment is because the abnormal neural development highlighted by a marked increase in the number of neurons and axons observed in children with ASD dates from the beginning of the second trimester of pregnancy, the time when virtually ALL the neurons that an individual will ever have are generated–months before the first postnatal vaccination, and nearly one and a half years before the administration of an MMR injection. It’s clearly impossible to explain this very important and very basic aspect of ASD by invoking postnatal vaccination without invoking something like vaccine-induced time travel.

Of course, the other factors that we know increase the risk of ASD are also prenatal; these include maternal obesity or diabetes, and exposure to certain medications such as antidepressants, etc.

If Anne Dachel wants to play “find an old quotation to support my position” she might well ignore this from Dr. Insel, who she cited earlier: “These new findings are in line with other recent observations supporting both environmental and genetic contributions to ASD, with the environmental factors likely prenatal and the genetic factors highly complex and sometimes not inherited.”

July 9, 2011 at 9:38 pm
(48) barbaraj says:

This is how I remember my son becoming ill. He had his vaccine, on day ten I could not keep him awake , he had the rash all over him, I took him to the doc where his temp registered 104. He by all rights had the measles. Days of crying, not feeding properly, ended with a sick little guy who , once a robust chubby faced toddler was now sick with gastro illness of unknown origin, (stool samples were sent to the university of maryland for tests) and he was getting thinner by the day. I subscribed to the JAMA, no computer , I didn’t get my first until 1996, and read enough to suggest that in crohn’s often measles was found in the intestines. It became to be understood by me, that a kind of measles encephalitis preceeded the gastro disturbance, not the other way around. It was a few more years, when my son lost his vision during a flare that he was finally diagnosed with crohn’s, all the while I knew it as “what happened when he got his measle vaccine”. Wakefield , finding it in autistic children may just have been a fluke, as these were the children the parents were seeking help for. I see nothing otherwise odd about his study, he was far more pristine than most, and most don’t get that kind of scrutiny. If they did we would be shocked, many are nothing more than sign offs, paid for conclusions, very poor quality, and much more lying this last decade than in history. My son , this one with crohn’s is not on the spectrum, that would be my ten year old, I usually refer to as 2000, who will be 11 in Sept..

July 9, 2011 at 10:35 pm
(49) Mary says:

Actually, Wakefield was also responsible for the now-discredited Crohn’s study you’re citing. Nobody has replicated it, and it turns out the method he used to detect measles RNA wouldn’t have worked, anyway. It was impossible for him to have found measles in either study, other than lab contamination. His lab assistant in the autism case testified that the test results were negative. Wakefield forged the data. He was a fraud.

I’m very sorry for what happened to your son, but there’s no credible evidence linking it to measles. Measles is not found more often in Crohn’s patients, and there’s no link between MMR and Crohn’s.

July 10, 2011 at 3:54 am
(50) Twyla says:

Mary, that’s not true about measles RNA. In a recent study, measles virus RNA was found in the intestines of a boy with autism and GI issues, and in a boy with GI issues but not autism, using three labe, which had consistent results, and one was the same lab as Dr. Wakefield et al had used.

Dr. Wakefield was one of a dozen authors of that paper. One of the two doctors who had the courage to stick by their work is John Walker-Smith, one of the most renowned pediatric gastroenterologists in the world.

July 9, 2011 at 9:38 pm
(51) barbaraj says:

The twin study suggested an environmental cause occuring before or AFTER birth, yet for some reason everyone missed the mention of after.
I have not researched the “healing” methods to offer a comment. Myself I am trying very hard to expand my son’s diet of three or four items, hoping that in itself may bring about some nutritional relief and improvement. I do not subscribe to psychological probing or fixing, I wouldn’t fix diabetes behaviors without managing insulin, and I feel the same for autistic behaviors, we need to fix the physical, IMO it’s a systemic illness . Wakefield was given a gift, a peak at the new group of children that share a cause and effect, too bad his important research has stopped. It may well be there are a few causes of autism all toxic and /or viral with similar outcomes. WE have named known causes, two drugs and rubella, certainly we are on the right path, we can see that each causes identical symptoms under the heading autism.

July 9, 2011 at 10:08 pm
(52) Sandy-2000 says:

The study hypothesize:
“Because the prenatal environment and early postnatal environment are shared between twin individuals, we hypothesize that at least some of the environmental factors impacting susceptibility to autism exert their effect during this critical period of life. Nongenetic risk factors that may index environmental influences include parental age, low birth weight, multiple births, and maternal infections during pregnancy. Future studies that seek to elucidate such factors and their role in enhancing or suppressing genetic susceptibility are likely to enhance our understanding of autism”
They give no hypothesis for AFTER birth. I find it quite strange that if the authors suggested after birth, and then give no hypothesis.

Not generated at any one person in particular, I think of almost any study, some make it into what they want it to be and or mean. An example would be the NAA’s write up. This study clearly makes no mention of vaccines as the environmental factors/ source and even if they did, it would be the authors hypothesis.

Anyone want to discuss their hypothisis? Risk factors that may index environmental influences include parental age, low birth weight, multiple births, and maternal infections during pregnancy?

July 10, 2011 at 3:58 am
(53) Twyla says:

Sandy, “postnatal” means after birth.

July 9, 2011 at 10:44 pm
(54) barbaraj says:

I have no idea why they would say..
Because the prenatal environment and early postnatal environment are shared between twin individuals, we hypothesize that at least some of the environmental factors impacting susceptibility to autism exert their effect during this critical period of life”
Clearly mentioning early postnatal environment including it in that “critical period of life” yet not “really wanting to go there” is suspect of avoiding the subject which at all levels is becoming taboo. I can help them, two different dips into a vial of thimerosal preserved hepb vaccine, toxic levels dependent on who “shook” the vial…or the smaller one receives more toxic levels . Perhaps being colonized with pathogens from different nurses..there are many possibilities open to explain differences in environmental influences.It may be interesting to cover more history surrounding an autistic child’s beginnings. How many born to that nursery at the same time are on the spectrum. I’ve read sad stories where infants have been given the wrong shots or the shot twice, most of us wouldn’t know if this happened. I had one nightmare visit in 2007 where the nurse stuck herself , said ouch, and in the same swift move injected my son, when she was finished the blood on her glove told the story. I insisted on her having hep tests as well as hiv, but who knows what other pathogens she shared with him. Rare ..I doubt it.

July 9, 2011 at 10:44 pm
(55) HappyMomofTwoGirls says:

Barbara, I am so sorry to hear of your son’s situation, and I can only imagine how you feel. What do the doctors say? I think most doctors, especially pediatricians, love children and want to help. Do they feel it could be the vaccine? I do not believe pediatricians are in on some conspiracy. It is a selfless, unglamorous kind of medicine. If they thought it was some other illness, I would trust them. I respect your feelings as a mom, but there are so many things that happen when babies are young, how can you be sure it was the vaccine?
I think the study clearly indicates prenatal as Sandy says. My question to Sandy: do you have kids on the spectrum, and how do you deal with all the controversy? It exhausts me.

July 9, 2011 at 11:28 pm
(56) Sandy-2000 says:

HappyMomofTwoGirls~ I do have a pre-teen son, diagnosed infantile onset severe autism. And he was severe, what people consider classic autism, he was all that plus. The controversy doesn’t bother me, I would be the one questioning that controversy. Explain to me why. I am the one with a different opinion and have experienced much of the back-lash for it. I don’t scare off so easy. I have yet to hear a good explanation for why vaccines pick on boys more than girls. Just what about each vaccine is a trigger, that tends to change as well. I agree vaccines cause injury, just as any medication can but I have yet to see convincing studies that show it causes autism specifically.
I share many of the same opinions as you do. Autism or not, I have one great kid and I cant rule out some genetic issues I or his father passed onto him although I would not hold myself to blame for it. It is what it is. I can think of many worse things my son could have than autism. Age could be a factor for both us parents as well. It seems no one wants to address any of the 4 hypothesis offered from the study, but easily addresses vaccines which wasn’t part of the hypothesis at all. Blogs do get tiring when they get so off track and I said it before and will say it again, not everything has to be about vaccines. It just doesn’t.

July 9, 2011 at 11:16 pm
(57) barbaraj says:

Mary, no , you are missing the FACT that my son got a full blown case of measles from his vaccine and that measles had been documented in the case of some crohn’s before Wakefield or I were born. Why do so many think years of study can be dismissed in one fell political swoop. In the case of Wakefield,are they cleaning up his path of years?

July 9, 2011 at 11:47 pm
(58) Sandy-2000 says:

Only since you’re offering the info would anyone have questions about it…. did your child have the measles vaccine or the MMR vaccine? And if there was a full blown case of the measles from such a small amount of a virus in a vaccine, how can doctors be sure there was natural exposure? Now I have seen studies about Crohn’s disease after in-utero measles. Crohn’s disease is the first genetically complex disease of which the genetic background has been resolved. The disease runs in families and those with a sibling with the disease are 30 times more likely to develop it than the general population.

July 10, 2011 at 2:37 am
(59) Twyla says:

Lisa, you wrote “Based on this study, of course, many autism groups are announcing that the idea of ‘autism as a genetic disorder’ has been debunked. Now, they say, we KNOW that it’s all in the environment. ”

Yet the very article you linked to (in the word “debunked”) said that what had been debunked is “the myth that autism is primarily genetic”. Not PRIMARILY genetic, but he’s not saying it’s ALL in the environment either. The article he posted says that:
“‘The difference between the identical and fraternal rates shows that genetics definitely plays a role in the disorder,’ Risch said, noting that if it didn’t, the concordance rates would be equal among the identical and fraternal groups. ‘But the fact that the fraternal twins have such a high rate shows that their shared environment is contributing significantly to their susceptibility.’”

I don’t know why you are saying that anyone says it is ALL in the environment.

July 10, 2011 at 4:04 am
(60) Twyla says:

Lisa, do you perchance have a link to the NPR interview of Dr. Martha Herbert? I can’t find it. Thank you!

July 10, 2011 at 6:39 am
(61) autism says:

Twyla – I, too, have searched and can’t find it. I hope it turns up on the NPR site!

I had the radio on on Saturday morning, and heard Herbert speaking about the fraternal twin study… and the presenter and Herbert were discussing its siginficance; she went on to talk about how she thought the study led back to environmental factors, and went on to list possible suspects such as plastics, pesticides, etc. and actually suggested that parents select organic foods (an intriguing way to prevent autism!!).

Did anyone else hear it or have a link?

July 10, 2011 at 8:21 am
(62) Linda says:

I’m a parent of a boy nearly 13 with autism. When I was pregnant with him, apparently the rise in autism was emerging, but certainly not near a point where at any time during or after pregnancy I was worried about my son having or developing autism. There was nothing in any of my pregnancy books about it – and only one mention in my baby-toddler care book (something like autism being 1 in 10,000). I don’t have to be an “expert” or do a lot of research in genetics to clearly know that things have changed since 1998. Autism is huge now. And I think all most of us want to know is simply “what’s happened?”, “what’s different now?”. I’m of the belief that if you dig into genetics, you will find that genetics contributes to probably most all diseases etc. But, that’s not what I want to know..I want to know why suddenly in the past 15 years, our genes that go back several generations without autism, suddenly now, at this point in history, seem to be held responsible by many researchers as the “main” contributing factor to having autism. I don’t believe this to be true, but of course we are now living in the age of concrete evidence only, not opinion. If my husband and I had our son in 1966, the year I was born, would he have had autism?? Some may say yes, but would have been diagnosed differently. I also don’t believe that the rise in autism is because “we’re diagnosing better and earlier”. That may offer a minimal explanation, but hardly the whole picture. I’ve chatted with school principals approaching retirement saying that they’ve gone their whole careers without seeing a student with autism, and now they have 5-6 out of a school population of 500. I am of the “belief” that environment plays much much more of a role in the autism epidemic, but where do you start in finding out which ones? Vaccines, toys, air, food, water, tv, computers, pesticides..it could be any one of those, something else or all of them.

July 10, 2011 at 1:36 pm
(63) Sandy-2000 says:

IDEA was created in what, 1975? Up until that time, disabled children weren’t in public schools and until autism was added to IDEA, it was largely never counted, either. General ed students also back in those days never often seen special ed kids, not until inclusion and least restrictive was enforced. One can look at school records, they are public, and see MR rates dropped at primary as autism rose.

July 10, 2011 at 10:54 am
(64) Aimee Doyle says:

It’s pretty clear to me that autism is not entirely genetic; when my son was diagnosed in 1994, the rate was 1 in 10,000 and I had to explain autism to everyone I knew, since no one had ever seen a child like my son. Now the rate is 1 in 110 and everyone I talk to knows something about autism. You don’t get from there to here by genetics. Environment plays a role.

Regarding vaccines, I would like to have these questions answered and I’ve rarely even seen them addressed. Although vaccines may be tested for safety individually, they have not been tested in combination. Similarly, there has been no testing to determine whether there is a genetically vulnerable subgroup of children that simply cannot handle the recommended schedule. Finally, most of the ingredients have not been tested for safety. Aluminum particularly is worrisome, since it (like mercury) is a neurotoxin. Once thimersoal was removed, aluminum content was increased. Vaccines have been promoted as a one-size-fits-all medical intervention — there is not other medical procedure that I know of where administration is not individualized.

I believe my son was vaccine damaged. I’ve spent a decade reading all the studies on the issue. I also watched him develop seizures with his DPT, lose language, eye contact and social skills with his first MMR, develop self-stimulatory behaviors with the second MMR, and develop aggression and self-injurious behaviors with subsequent vaccination. I could by the coincidence argument once, but he reacted adversely to every vaccination. Thousands of parents have a similar story; at some point enough anecdote becomes data.

July 10, 2011 at 11:30 am
(65) passionlessDrone says:

Hi Lisa -

Fourth, it is unclear why this particular study’s findings were different from those of prior studies. It will be interesting to learn more about this. So far, so far as I know the study has not been replicated. Earlier studies, of which there have been quite a few, seem to suggest that autism is an extremely heritable disorder.

Well, one reason that has been suggested is that previous studies were

1) Much smaller
2) Designed differently. This study was prospective and actually performed diagnosis on the twins in question.

Regarding replication, other prospective twin studies have found reduced concordance compared to historical estimates.

http://www.ncbi.nlm.nih.gov/pubmed/20410716

Autism screener scores are moderately heritable in 2- to 3-year-old twin children from a population-based twin panel

- pD

July 10, 2011 at 11:36 am
(66) HappyMomofTwoGirls says:

Sandy – Thanks for responding. I feel the same way about my girls – I treasure them and accept them just as they are. I too have been attacked for just disagreeing, however politely. I have been called a fraud, or told my girls must not be autistic enough, whatever that means. And yet my basic question never get answered; there is just attack, deflection, or ignoring them. So if anyone can answer, I really want to know.
Why would vaccines affect boys more than girls?
Why would vaccines, just because there are more of them, suddenly create this rise in autism. The MMR has been around for a long time?
Why do I know so many families, some of them on the anti-vaccine side, who have multiple kids with autism, yet the younger ones with autism have never been vaccinated?
If the cause is correctly identified, why do the alternative treatments which target that cause (immune/mercury) not work in everyone?
How can chelation reverse brain cells supposedly damaged by mercury? (It can’t; that damage would be irreversible)
Why would pediatricians in general stand by vaccines, when they are in a field to help children (there are far more lucrative areas of medicine), and are obviously more capable of interpreting the facts than we are.
What of all the genetic research?
Finally, when autism appears, often progressively, how can anyone target one day, one moment? Unless there was a dramatic event, and usually there is not, unless some creative spin is applied, how can you possibly know it was a vaccine?

July 10, 2011 at 1:34 pm
(67) Twyla says:

Alas, I’m out of time. And I do agree with one thing you said — this debate is exhausting! But I’ll be back to respond later.

July 10, 2011 at 11:37 am
(68) Maureen says:

I have fraternal quadruplets (2 B, 2 G). Each of them was being seen by a developmental clinic, due to their prematurity, and were found to be making their milestones on time. Around their second birthday, they received a round of immunizations. One of the boys had an extreme reaction (high fever, high pitched screaming, vomiting, etc). After the incident, that child’s vocabulary decreased to 11 words, he was no longer able to use a fork or spoon to feed himself and he would engage in repititous behaviors for hours on end. My other three children remained completely typical and continued to make their milestones on time. I truly believe that the affected child had some sort of predisposition and could not handle the number of vaccines he received at one time. I still believe in vaccines, but think that they could be spread out a little more.

July 10, 2011 at 11:40 am
(69) HappyMomofTwoGirls says:

I also think it is curious, and a bit disingenuous, that the Age of Autism people will tag team a site like this, from Anne to Twyla, and always make it seem as if many people agree with them. But if you look at the posts, it is always the same few people.

July 10, 2011 at 1:01 pm
(70) Twyla says:

I find it curious, and a bit disingenuous, that you even post that comment. We are not a “tag team”. We are simply people posting information and opinions. I agree with 99.9% of what Anne posts, but we are not in communication, not posting in concert. Rachael is a new voice. Barbaraj also voices her opinions as an individual. I don’t know how I could possibly “always make it seem as if many people agree” with me.

There is nothing disingenous about my posts. My opinions are sincere. You may disagree, but don’t imply that I’m insincere, dishonest, or part of some crafty plot.

July 10, 2011 at 1:43 pm
(71) Sandy says:

This is true. On AoA if your post isn’t of that sites opinion, it never get’s posted, so they head over to this blog and others so this type of thing isn’t cluttering their site. It’s a shame to be used that way. The disrespect is already on this topic, twice people have been called ridiculous, and it is those very tag teams which looses readers.

July 10, 2011 at 12:41 pm
(72) HappyMomofTwoGirls says:

Aimee,
Aluminum is one of the most common elements on the planet – it is in the air, food, water. Aluminum is a tiny part of any shot. Aluminum needs to be consumed in large quantities by someone with kidney problems to cause any damage. This is just the kind of misinformation that does not help any side of this argument.
PS It makes me crazy when people call their kids “damaged” or “injured” We are all imperfect. But that terminology makes our kids sound sub-human. And the world doesn’t want to spend money helping people who are no longer whole. You and all the people who use such dismissive terminology for your children and mine are doing a grave disservice to everyone with autism.

July 10, 2011 at 1:15 pm
(73) Twyla says:

Having an injury does not make a person sub-human. Helping a person with an injury does not do the person a “grave disservice”. Recognizing the injury, learning how to treat it, and learning how to prevent it would be a great service to everyone with vaccine-induced autism, and perhaps to others with autism that did not arise from vaccines but may have similar neurological and immunological components.

Humans have evolved mechanisms to deal with toxic exposures via skin, lungs, and GI system. Injection of aluminum bypasses these systems. We do not have studies to determine safe levels of aluminum which can be injected into infants, children, or even adults. Aluminum is of concern because it is neurotoxic. In addition, it is used as an adjuvant to stimulate the immune system, and with the increased rate of immune system disorders in children today (asthma, severe allergy, auto-immune disorders…) it is of concern that we may be overstimulating some children’s immune systems and throwing immunological development off course.

July 10, 2011 at 12:50 pm
(74) Twyla says:

As Dr. Martha Herbert wrote in 2006 in the article “Time to Get a Grip”:

“It is often said that autism is the most highly genetic of the neurobehavioral disorders, and that there is little or no evidence of environmental factors.28 However, observations about environmental factors relevant to autism go back decades, though they have been obscured in recent years by the dominance of a genetic focus. The view of autism as genetically determined is supported by observations of high ‘concordance’ (matching autism diagnoses between identical twins) and high recurrence (increased chance of subsequent children having some kind of autism spectrum disorder after an autistic child is born into a family). In addition, a claim that autism is predominantly genetic rests on an assumption that our environment is stable and/or that we are not affected by environmental changes…

(cont.)

July 10, 2011 at 12:52 pm
(75) Twyla says:

(cont.)

“When we examine the frequently cited figure of a 90 percent ‘concordance rate’ among identical twins (meaning that if one twin is autistic, there is a 90 percent chance that the other one will also be autistic), we can see that it overstates the case. Among identical twins, there is a 90 percent chance that if one twin is fully autistic, the other will have some autistic features, but only a 60 percent chance that the second twin will be fully autistic. While some researchers tend to focus on the 60 percent to make a case for genetic predisposition, we need to explain the 40 percent as well. To explain this nonconcordance we need to think about not just genes, but also the environment. Moreover, we also need to explain recent reports of high concordance among dizygotic (fraternal) twins, which suggest environmental rather than genetic factors.”
http://www.autism-society.org/about-autism/causes/2006-5th-environmental_health.pdf (see p. 19)

So, the findings of this recent paper are not earthshakingly new, and do not contradict all prior findings, but it does “rock the autism world” that we have another mainstream voice saying that the environmental component in autism is major.

July 10, 2011 at 1:19 pm
(76) Karen says:

I’m reading this and I am confused..people are talking about introvert versus autism…..this is such a fine line to even discuss that I fear that the true mission of identifying and preventing the cause of autism gets stuck in this debate. I fear that they have widened the doors so much that everyone with an idiosyncrasy ,tic, speech delay, alternate view point gets the ASD label. For those of us living with a person who is really autistic – who puts holes in sheetrock with their heads, who didn’t talk until 5 and it’s still limited, who can’t make a friend and really doesn’t seem to care as long as other things are entertaining, who sleeps 2-5 hours a night….I don’t care about introverts and small obsessions….I want someone to look at autism as I live it…and by the way my son is a dizygotic twin and his sister does not have it. Same vaccines – even the same vial and administrator – same intrauterine environment, same viruses (they shared everything)…my son was autistic at minute one – the nursery nurses recognized his sensory issues and kept offering to “give me a break” from the screaming….environment may be the explanation for the others the ones that the study labeled as “asd” but the study had another group they called “strict autism” and that’s where my son is and that’s where the label should stay and the research is missing because it’s too busy reacting to all the asd people complaining….I really think that we are talking about apples and oranges here and the newDSM-5 may address that …at least I hope so. I’ve even heard that in some areas ADD and ADHD are being put under the autism umbrella – if you keep watering down the diagnosis then it will be impossible for research to find a specific point of causation/prevention/treatment. Not every one who is different is autistic for God’s sake!

July 10, 2011 at 1:50 pm
(77) Sandy-2000 says:

Karen~ you are the only other person of all these years of which your child showed sensory issues right off the bat- but i was a little different, the nursery nurses kept bringing my baby back to me. They didn’t know what to do with him and were beside themselves. My son also had no shots until he was 2 weeks old so his behavior cant be accounted for based on that or drugs during birthing, either. I would really enjoy speaking with you more if you wouldn’t mind. Lisa can give you my e-mail address if you’re interested.

July 10, 2011 at 3:05 pm
(78) Malia says:

I disagree that the diagnosis has been watered down in recent year. The DSM-IV itself hasn’t changed since 1994. By the time the DSM-V takes effect, it will have been nearly 20 years since the previous change.

Furthermore, PDD-NOS was first introduced as “PDD” in the DSM-III, attached to the description for autism in the DSM-IIIR, and then modified only slightly in the the DSM-IV.

The only change between the DSM-IIIR and the DSM-IV for “autistic disorder” was the reduction of the overall number of required criteria from 8 to 6, the min. required for 2-1-1 (in each of the three categories remained the same).

What has changed more recently, perhaps, is how doctors have been applying the diagnosis.

July 10, 2011 at 3:26 pm
(79) Malia says:

Autism has always existed with varying levels of severity included within the definition – so “high functioning” individuals are no less “really autistic” than lower functioning ones. Creating holes in drywall with one’s head has never been a “listed” criterion for “real autism.”

Furthermore, bumping all the HFA individuals “off the spectrum” will not do anything to improve the response to treatments of those who are lower functioning. It will, however, cause those who were originally diagnoses on the spectrum and now may be moved to alternative diagnostic categories to have to redefine significant portions of their identities with new “words.”

July 10, 2011 at 3:43 pm
(80) Rachael says:

Karen: You are absolutely right! Introversion is not autism, but when I look at the AQ test to see if a child is showing signs of autism, what I see describes an introverted personality. Experts say, that they recognize the subtle signs present in infants as young as six months and some dispute claims from parents that say, that their children were “completely normal”, prior to a vaccination, but, perhaps, those signs were just those of a normal, developing “introverted baby”. Introversion is not an illness, a handicap or a social problem, but introverts do tend to have a lower baseline for arousal and have more brain activity in general, specifically in the frontal lobes. They are usually more sensitive to noise and sounds. It’s a trait born in about a quarter of the population. The dramatic increase in autism can not be explained by this personality trait alone because there have always been introverts in the world. They have married and had children just like the 75% of extroverts who make up the rest world. But, perhaps, it is this specific trait and the way the brain is wired, that is responsible as to why genetics plays a role in autism; the genes for introversion and the vaccine trigger in some (not all). Seeing as many parents of autistic children have said, that their child’s autism developed after receiving a vaccination and considering that vaccines stimulate the immune system, perhaps that infant would have developed into a normal, healthy, happy “introverted child” if he/she had not been given that inoculation.

But, just like there are degrees of introversion, there are degrees of autism (from mild, to severely handicapped). How introverted your child is may determine how high on the autism spectrum they are, or become. Some children may be born autistic, while some introverted children may develop autism after an evironmental trigger.

July 10, 2011 at 5:08 pm
(81) HappyMomofTwoGirls says:

Sandy, I really appreciate your posts. I am so tired of the Age of Autism people quoting the same outdated statements from doctors, and confusing people new to the topic. For any parent out there with a newly diagnosed child, I would advise to find a pediatrician willing to really work with kids on the spectrum, who really understands the ASD issues, but not a DAN (Defeat Autism Now) doctor who will bankrupt you and ask you to do things mainstream medicine denounces. I would also take everything read with a healthy dose of skepticism. You need to form your own opinions. It is natural to want to know why, and have someone/thing to blame, but autism doesn’t work that way, and blaming only leads to anger and misery, not to helping your child or you.
And calling a child damaged is damaging, especially when it seems to be the ultimate way many anti-vaxxers describe their children. I know may kids with really disabling Cerebral Palso, and their parents do not describe them as damaged. It is simply an unacceptable way to describe a person you love.
Sandy and Rachel, my kids slowly showed signs of autism, but when I look back honestly , I can see the hypersensitivity, etc was there from the beginning. I suspect lots of other people would to if they were being honest with themselves. Severe adverse reactions to vaccines are really obvious and rare.
I would love to email you also, if you want.

July 10, 2011 at 5:40 pm
(82) Sandy-2000 says:

I’m sure Lisa will send you or I the others e-mail address- Lisa’s site addy is on this site- autism.guide@about.com.

I have never looked at autism or any disability as damaged, and I hope when my son grows up, those who share that opinion wont effect his well-being of his self worth. I have had great doctors for the care of my child, and he actually did need Lupron, sort of. He had the implant but he wasn’t 4 years old and a reputable doctor in that field did the tests. I cant imagine 10 times the normal dose, either. I often wonder too, the side effect of the bone plates starting such a treatment so young as 4, and even into teen years. It’s a valid topic of options offered out there in the name sake of autism.

July 10, 2011 at 5:52 pm
(83) Malia says:

My mother-in-law recently had a stroke. Her brain has been damaged by that event… it is a medical fact. When the blood stopped flowing, brain cells died, diminishing her capacity to talk, to walk, to write, to think. There is no other way to put it. I love her, but denying the facts of the matter do nothing to help her recover or to prevent such an event happening to others.

A friend of mine was hit by a car. The accident damaged her brain such that she could no longer taste or smell anything. She was, therefore, clearly damaged by the event, allowing her to collect “damages” in a law suit.

IMO, inferring that anyone who refers to a loved one as having been damaged by an event is “unacceptable” and somehow “unloving” is just plain silly.

July 10, 2011 at 6:35 pm
(84) Malia says:

Put another way – to have be damaged is to have been hurt by something or someone else… which is what some people truly believe has happened to their children. It is also a legal term.

It does not arbitrarily imply that parents who use the term love their autistic children any less than those who do not believe that a damaging event has occurred. In some respects, I find some of the implications regarding “inferior genetics” as a cause more insulting than the idea of a “damaging event.” On yet another hand, if everything is just “difference” and differences are normal – why do we bother to diagnose autism at all?

July 10, 2011 at 5:46 pm
(85) HappyMomofTwoGirls says:

Thanks Sandy. I will email Lisa. I meant you and Karen, by the way.

July 10, 2011 at 5:53 pm
(86) autism says:

Hi, all. Have been out and about last night and today, and am amazed at the number of comments here!

A couple of points:

If you’d like me to share email addresses, do shoot me a note directly at autism.guide@about.com, saying “please send my email to X person.” I’d be glad to.

Re A of A folks on this blog: Twyla, Maurine and Anne have all been here before, and Twyla is a regular commenter. I appreciate the help, but honestly don’t feel this is an A of A “tag team” event! It’s true that A of A has a very different moderation policy than I do – but part of that choice on my part means that anyone is allowed to say what they believe.

But.

Please, please refrain from tossing around personal insults. So far, this thread seems reasonably civil, but I have ended threads in the past when folks were unable to interact with one another without flaming.

Thanks all,

Lisa

July 10, 2011 at 6:26 pm
(87) HappyMomofTwoGirls says:

Lisa, I apologize to you and anyone else if I was in any way uncivil or impolite. It is just hard to maintain civility towards people who called me so many cruel names on Age of Autism, and banned me from their site just for asking questions or having a different opinion. It leaves a bitter taste, since I too am a parent of children with autism.
As far as Malia’s comment, true those people you describe suffered brain damage due to accidents. But do you regularly describe your mother-in-law as your “stroke-damaged mother-in-law” to people like that is the foremost thing about her? Because many people who are anti-vaccine call their children – “my vaccine-damaged child” every time. And for the record, I do NOT consider people with developmental challenges damaged. They are different but not less, as Temple Grandin says. No matter what anyone’s degree of challenge, they still retain the grace and dignity of a full human being by virtue of having soul. And they should be spoken of not as shells of some formerly more complete people. The world needs to know that we believe our children are whole people if we want to world to value them and treat them with the respect and compassion they deserve.

July 10, 2011 at 8:27 pm
(88) pfffttttt says:

Lisa and her cronies, always the deniers. Always a complete waste of time. No surprise here. Even as the rest of the world acknowledges the truths about autism. Lisa clings to her familiar old, worn out genetic, autism is a gift mantra. Good luck with that! As research marches on, you are going to need it!!

July 10, 2011 at 8:37 pm
(89) autism says:

OOOOH, person without a name, I have CRONIES?! Good for me.

Given that I’ve never said “autism is a gift,” not sure where you’re coming from – but am thrilled to hear that I’m now considered to have a “gang o friends” who will support me.

Of course, I’m not sure that I need support, given that I have no organization, am not pushing an agenda, maintain a blog that is open to all (including you, Pfffft, whoever you are), and have an actual life outside of arguing with nameless individuals like yourself.

Have a pleasant evening. And good luck with your research, and your dedication to “vaccine-induced epidemic.” You’re gonna need it.

Lisa

July 10, 2011 at 8:52 pm
(90) HappyMomofTwoGirls says:

Good night to all,

and to Mr./Ms pfftttt, if I were a child with autism, I would certainly rather be raised by a parent who thought I was special and “gifted” in my own way, rather than one who saw me as “damaged” and “injured.”

And to Lisa, nicely stated. I would be glad to be one of your “gang o friends.”

July 10, 2011 at 10:27 pm
(91) HappyMomofTwoGirls says:

Twyla,
I never attacked anyone at Age of Autism, and I most certainly was called vulgar names. I consider ***hole to be a vulgar name, as I do full of sh**, and troll, and imposter, and narcissist, and insincere, and all the other things that people said. And the woman who said she would visit me in my dreams really freaked me out. All I ever did was voice an opinion and ask questions. I have the print outs. Denying it doesn’t change facts.
I really think you need to change the way you do things at Age of Autism. You alienate more people than you convert. Treating other parents of kids with autism with hostility is not forwarding any respectable cause. Neither is doing things like publishing Dr. Paul Offit’s address which prompted some poster to say they would “send him a Christmas card, he, he.” Sounds like a threat. Somehow that crazy comment made it through the moderator and mine did not.

July 10, 2011 at 10:57 pm
(92) autism says:

Folks, I’m about to head to bed and I am going to close comments on this particular thread. I think we’ve exhausted the topic of the blog, and we’re now treading a whole new path. Please feel free to join the conversation on other posts!

Lisa

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