UC Davis M.I.N.D. Institute Study Shows California's Autism Increase Not Due To Better Counting, Diagnosis
FOR IMMEDIATE RELEASE:
(SACRAMENTO, Calif.) - A study by researchers at the UC Davis M.I.N.D. Institute has found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted - and the trend shows no sign of abating.
Published in the January 2009 issue of the journal Epidemiology, results from the study also suggest that research should shift from genetics to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California's children.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," said UC Davis M.I.N.D. Institute researcher Irva Hertz-Picciotto, a professor of environmental and occupational health and epidemiology and an internationally respected autism researcher.
Hertz-Picciotto said that many researchers, state officials and advocacy organizations have viewed the rise in autism's incidence in California with skepticism.
The incidence of autism by age six in California has increased from fewer than nine in 10,000 for children born in 1990 to more than 44 in 10,000 for children born in 2000. Some have argued that this change could have been due to migration into California of families with autistic children, inclusion of children with milder forms of autism in the counting and earlier ages of diagnosis as consequences of improved surveillance or greater awareness.
Hertz-Picciotto and her co-author, Lora Delwiche of the UC Davis Department of Public Health Sciences, initiated the study to address these beliefs, analyzing data collected by the state of California Department of Developmental Services (DDS) from 1990 to 2006, as well as the United States Census Bureau and state of California Department of Public Health Office of Vital Records, which compiles and maintains birth statistics.
Hertz-Picciotto and Delwiche correlated the number of cases of autism reported between 1990 and 2006 with birth records and excluded children not born in California. They used Census Bureau data to calculate the rate of incidence in the population over time and examined the age at diagnosis of all children ages two to 10 years old.
The methodology eliminated migration as a potential cause of the increase in the number of autism cases. It also revealed that no more than 56 percent of the estimated 600-to-700 percent increase, that is, less than one-tenth of the increased number of reported autism cases, could be attributed to the inclusion of milder cases of autism. Only 24 percent of the increase could be attributed to earlier age at diagnosis.
"These are fairly small percentages compared to the size of the increase that we've seen in the state," Hertz-Picciotto said.
Hertz-Picciotto said that the study is a clarion call to researchers and policy makers who have focused attention and money on understanding the genetic components of autism. She said that the rise in cases of autism in California cannot be attributed to the state's increasingly diverse population because the disorder affects ethnic groups at fairly similar rates.
"Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding," Hertz-Picciotto said.
The study results are also a harbinger of things to come for public-health officials, who should prepare to offer services to the increasing number of children diagnosed with autism in the last decade who are now entering their late teen years, Hertz-Picciotto said.
"These children are now moving toward adulthood, and a sizeable percentage of them have not developed the life skills that would allow them to live independently," she said.
The question for the state of California, Hertz-Picciotto said, will become: 'What happens to them when their parents cannot take care of them?'
"These questions are not going to go away and they are only going to loom larger in the future. Until we know the causes and can eliminate them, we as a society need to provide those treatments and interventions that do seem to help these children adapt. We as scientists need to improve available therapies and create new ones," Hertz-Picciotto said.
Hertz-Picciotto and her colleagues at the M.I.N.D Institute are currently conducting two large studies aimed at discovering the causes of autism. Hertz-Picciotto is the principal investigator on the CHARGE (Childhood Autism Risk from Genetics and the Environment) and MARBLES (Markers of Autism Risk in Babies-Learning Early Signs) studies.
CHARGE is the largest epidemiologic study of reliably confirmed cases of autism to date, and the first major investigation of environmental factors and gene-environment interactions in the disorder. MARBLES is a prospective investigation that follows women who already have had one child with autism, beginning early in or even before a subsequent pregnancy, to search for early markers that predict autism in the younger sibling.
"We're looking at the possible effects of metals, pesticides and infectious agents on neurodevelopment," Hertz-Picciotto said. "If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible."
The study was funded by grants from the National Institute of Environmental Health Sciences (NIEHS) and by the M.I.N.D. Institute.
In 1998, dedicated families concerned about autism helped found the UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute. Their vision? Experts from every discipline related to the brain working together toward a common goal: curing neurodevelopmental disorders. Since that time, collaborative research teams at the M.I.N.D. Institute have turned that initial inspiration into significant contributions to the science of autism, fragile X syndrome, Tourette's syndrome, learning disabilities and other neurodevelopmental disorders that can limit a child's lifelong potential.
I find that working with autistic children is frustrating, but extremely rewarding.
I hope this leads to better treatment:
http://www.cnn.com/2009/HEALTH/05/04/autism.brain.amygdala/index.html
Crossing my fingers...
Posted by: Rick | May 07, 2009 at 12:28 AM
Hi Robin.
A pill for cable pull-out prevention? You can do better than that! I think there's a triple vacc to prevent such dastardly action.
Seriously, I tend to think that everyone sees the same thing as I do on t.v. but I guess the picture is a little more complex than that. I know what you mean about the vaccine issue coverage-it kind of goes in waves.If you do pull out then you've always got Matt Lauer and Meredith Viera left. They seem a little discerning when it comes to the issue. I keep waiting for Larry King to re- do the show on autism that was mentioned at Xmas. Good luck!!
Posted by: jen | January 09, 2009 at 10:30 AM
Jen,
That sounds like very good coverage indeed. Hopefully here in the US the people who decide what gets said on my television news programs will decide to get their heads out of their rear ends and stop pretending there is no autism epidemic or that even if there is one the cause is a complete mystery.
I just had a bit of a bruhaha here with the significant other last night. I’d convinced him, a few years ago, that paying for cable television wasn’t a good idea and that we shouldn’t have it in our home. Then a year ago when he bought the really big telly we began paying for cable TV service again, and I was ok with that because it seemed that the news coverage of the vaccine damage issue that was being shown on my telly (in between pharmaceutical commercials) had improved somewhat. But yesterday I told him that it’s getting bad again and if things don’t improve vastly in the next four to six months I want to drop the cable again. But of course (oh brother…) he went through such terrible psychological trauma in those years without cable, he’s not sure he can stand it again.
So anyway the argument went something like this..
Me: “Oh good grief, I wouldn’t want to INCONVENIENCE anybody. What’s more important after all, our children or our shows on the telly?”
My S.O: “Well it’s not just me, EVERYONE will miss it!”
Me: “Everyone but me but then perhaps there’s something wrong with me. No doubt it’s something that a pill could fix. I know, why don’t you ASK YOUR DOCTOR about that?! You could call him up on the phone and say ‘Hello Doctor, my wife wants to get rid of the cable telly imagine that! Is there something she can take that would fix her?..’”
Later on that evening, my S.O. told me that there’s talk about extending the deadline for when they will drop the standard definition broadcasting signal in the US. Obama, he says, wants to extend the deadline because there are still a lot of households, apparently, who haven’t got their converter boxes. “Oh lovely”, I said, “I am so glad to see he’ll be hitting the ground running and taking on the really IMPORTANT issues!”
Anyway enough of the public airing of my domestic dysfunctionalities.
I mean, God forbid there should be a few households in the US who aren’t able to get programs on their telly. They might start looking elsewhere to find out what to think about the world around them.
Posted by: Robin Nemeth | January 09, 2009 at 08:19 AM
Hi Robin, well what I was referring to on t.v. was a quick response to an open question posed to people about what they feel would make the healthcare system better. Fox news (it's channel 31 here in Canada and same channel as Nancy Grace is on) played three peoples' answers as to what they think needs to be done. One person mentioned emphasizing more practical exercise in phys-ed (dance, outdoor activies, things kids will do in adulthood VS baseball or gymnastics etc. which are mostly done when a child. Another caller talked about better health care coverage for everyone (more socialized health care) and the third caller (I think her name was Lisa) had 3 boys on the spectrum and mentioned how she wishes more priority would be given to knowing the cause of autism and funding care for it. So it was just a little question about what is important now to focus on in healthcare and I think it was really neat that at least autism got in as one of the three issues mentioned.
Posted by: jen | January 08, 2009 at 09:00 PM
"The agency estimates that the baby boom generation will become eligible for retirement at a rate of 10,000 a day for the next twenty years."
More information per.................
http://www.tcpalm.com/news/2009/jan/07/social-security-goes-04/
In this calculation, they are not compensating for the next twenty years when children with autism reach age 18 when they are eligible for Supplemental Security Income (SSI) and Medicare/Medicaid. Families can supplement their income when their child reaches age 18 and it doesn't depend on families having a minimum income to qualify.
http://www.socialsecurity.gov/ssi/text-child-ussi.htm
So parents, when your child reaches age 18 please look into SSI and Medicaid/Medicare for your child who will be turning into adulthood. It is very important!!!! It is important for your family's financial well being since no one came to your aid when your child was younger (as in the case of our Eric).
Besides these children/adults with autism can cost on a conservative basis in a residential center/group home anywhere from $50,000 to $100,000 a year (though I think the estimate is probably closer to $100,000 a year and could be more). This estimate is in the following book:
"Milestones: Normal Speech and Language Development Across the Life Span" by John W. Oller, Jr., Stephen D. Oller, Linda C. Badon
Plural Publishing, Inc.
Autism Spectrum Disorders on page 383.
In the long run the medical community can say that autism is due to a better diagnosis but in the next twenty years, when families start hitting SSI and Medicaid/Medicare, financial numbers in the Federal budget will prove them wrong. One day, someone will do an analysis when those figures go up and it will show that there are thousands if not millions of adults with autism getting SSI and Medicare/Medicaid.
Ray Gallup
Posted by: Raymond Gallup | January 08, 2009 at 08:01 PM
It's obvious that we are stressing predisposed genes for autism, such as being able to handle metals, pesticides, vaccines, or any garden variety modern day ON PURPOSE oxidatives stressors.
Bill Walsh told me one time he had concerns about the copper piping in homes, since most of his autistic kids had high copper/low zinc (they see saw with one another) . And what of iron? Iron fortification started in the forties, right around autism. These combinations have certainly caused our "genes" to express. Family histories of autoimmunity are especialy vulnerable, because when you lose self and non self cell recognition, the body is into alarm mode, and attacks everything it doesn't recognize. The weakest link it seems is the gut brain axis in our kids. So, one has to wonder, what weakens that? IMHO, a garden variety of people who are not being recognized as having an underlying CELIAC conditions even with false negative test with symptoms (this includes more than wheat and milk, it includes soy and corn-aka the ingredients in our western diets) , an underlying infection like LYME which would cause leaky gut, leaky brain, and basically cellular/respiration death due to things that ruin ATP....garden variety things here, such as MSG, such as mycoplasma, such as infections in total, such as plastics, such as pesticides, BT and GMO toxins etc.
So, as far as the genetic research goes, sure, I guess fund them, but not to the exclusion of not looking at what turns off and on genes, or mutates them, by environmental agents, and then think of WHAT ARE WE DOING DIFFERENTLY from the onset of this epidemic starting in the forties, heck, make a list and go after the culprits, and you begin to track the industrial medical pesticide and food cartels. This then becomes almost a sign of purposeful intent, to control the american people, to make them submissive, sick and dependent/addicted on the systems. Think HDTV conversion is all innocent, and that it's intended for you to have a clear picture? THINK AGAIN, it is a mind control method. Do a google, this is not the space for that argument...but it is saying that we are indespensable human beings, and children, who are the markers of how our society is going, are acceptable losses.
It has been this slow dissent, so slow, that people have not recognized what is happening in this undercurrent of so called feigned concern, but at the same levels, are denying and are not transparent as one may think.
So, as long as this feign concern continues, and that we support research that diverses away from known environmental triggers, then the more autism will rise, the more families will suffer, and as far as THEY are concerned, who gives a crap?
And, we have to think about all those poor scientist who will be out of a job in their genetic departments...who depended on us parents to be left in the dark and blind alleys of autism research. Every industry has to come up to state of the art...from machines replacing people, and so forth. So as far as I am concerned, if you don't have a background in TOXICOLOGY in autism, you are drifting off the mark. Maybe, you should even be fired? Or trained better? Or clinically HANDLED our kids and saw their biochemistry and or actually TOUCHED THEM and saw their biopsies to finally get the raw picture. LIKE ALL THE PARENTS HAVE and have proclaimed for years...."something happend after that"..... (exposure, vaccine, timing)
Posted by: Kathy Blanco | January 08, 2009 at 02:49 PM
"increase in the number children born in California with autism"
I am thrilled with the study, but deeply disappointed in the wording of this press release, which in its lede paragraph says that the increasing number of children are BORN with autism. That makes people think genetic problem -- they are BORN with it. It undercuts the entire point of the study and seems to discount the notion that those environmental causes (i.e. vaccines) happened in the first two years of life. I wonder whether this is intentional, so as to avoid controversy, or inadvertent. To my mind, a better word would have been "Diagnosed" with autism in California.
Posted by: Garbo | January 08, 2009 at 02:49 PM
I’m surprised that a study at the University of Wisconsin has not made it on AofA. It was reported in the Milwaukee Journal Sentinel. Of course the reporter dismissed vaccines as being a cause because it has been thoroughly studied. Ha
http://www.jsonline.com/features/health/37050669.html
Posted by: L. Stuiber | January 08, 2009 at 02:49 PM
I cant help thinking that we are missing something here. For example- Are there sources of mercury in California that we have not looked at- or are many of the new cases found in kids who live near power plants or forest fires or crematoriums? Can anyone tell me- Is mercury still used in pesticides? If so, how much are kids getting in their apple juice? How many families of the newly autistic are fish eaters? Or is it the combination of environmental mercury PLUS the aluminum in vaccines? What percentage of these new cases were vaccinated outside of California? With reduction of mercury in vaccines are we seeing fewer very severe cases of autism?
BTW- Friends, why are we not pressing the doctors to answer this question? Why are you not demanding a full withdrawal of all mercury from all injectables ? Where is your social and medical and scientific conscience? If you wont stand up against poisoning of babies and pregnant women, will you stand up for or against anything?
Posted by: Cherry Sperlin Misra | January 08, 2009 at 01:42 PM
Thank you Maureen D. for your for your comments. I have a 20 yr old son that was diagnosed ADHD at five. Once he was 'labeled', he was pushed through the system without any further comments. I always knew there was something else 'special' about Kyle, but it wasn't until he was 16 that a counselor our family was seeing for routine behavioral issues asked that Kyle go to UCLA to rule out Aspergers, that he was diagnosed. All of the help we could have had and services that kyle was entitled to that he never got makes me ill. Kyles sister now 26, no history of any learning disabilities, has twin boys that are on the spectrum. They are almost 4 and fairly high functioning thanks to early intervention and lots of awareness and therapists. Happy New Year to all and we all need to stay focused in 09'.
Posted by: [email protected] | January 08, 2009 at 01:32 PM
There are 11,500 web sites updated in 2008 that mention autism, epidemic and myth, including many very prominent ones. Since this story came early this am on Age of Autism, the number of outlets covering it has been steadily rising and now sits at 14, oops 15.
In my opinion this goes to the most critical answerable question, because it sets the tone, scale, and direction of the response by the NIH, AS, insurance companies, the media and others. It is a matter of ethical and fiduciary responsibility that there be no uncertainty here. There is no point in allocating substantial funds to environmental research if there is no modern epidemic. However, if it can be shown that there is one, then the breaks need to go on in genetic research and those funds need to be substantially, though not completely, redirected. Genetic research is still very important so that identified at-risk individuals can be raised in an environmentally gentle environment with justified extra effort. My opinion is that the existence of funded environmental research has been a concession that an environmentally triggered epidemic is highly likely. The MIND study should help solidify that position and should immediately trigger a discussion of altering the strategic plan of Autism Speaks and the rest. With insurance companies being increasingly asked to foot the bill for autism services, addressing manageable environmental risks should become a multi billion dollar concern. Our politicians need to take a 911 commission style hard look at how they have contributed to this mess, and update legislation accordingly.
There can be no more keeping one foot out of the water.
Posted by: Ben's Dad | January 08, 2009 at 01:32 PM
Isn't it odd how the Quackosphere is unusually silent concerning this study? Are they eating their feet, do you wonder?
Posted by: Craig Willoughby | January 08, 2009 at 12:29 PM
Jen wrote: “This is huge. I hope it hits main-stream media because it certainly goes against what AAP and CDC put out.”
Don’t hold your breath.
Watching Showbiz Tonight again, curious about the media coverage of the Travolta story, I saw that Dr. Sanjay Gupta got an absolutely glowing recommendation from Nancy ‘there is no controversy here! NO controversy!!!’ Synderman.
I hate to be too terribly pessimistic, but I’m not at all sure it matters all that much how fair he might have been, in the past, in covering the issue of vaccine damage. Peoples’ opinions change.
BTW, once again, no mention at all of the verboten word ‘autism’ on Showbiz Tonight.
Just now, when I did a Google news search on ‘Jett T’, the drop down menu of most popular recent searches shows me ‘Jett Travolta autism media’.
Posted by: Robin Nemeth | January 08, 2009 at 11:07 AM
SHOCKER!
Posted by: karenatlanta | January 08, 2009 at 11:06 AM
I can HEAR the gnashing of teeth up the road at Yale...
Posted by: Stagmom | January 08, 2009 at 10:43 AM
This is awesome!
I have a feeling that Hertz-Piccioto's name will be synonimous with "Hero" in the coming years. Here is someone else we've been waiting for!
JB, you brought up a good point about the 10% genetic figure. If 10% were a strong genetic basis for autism, then where does the other 90% come from?
Posted by: Craig Willoughby | January 08, 2009 at 10:43 AM
I think what also isn't discussed is that these are the AUTISM numbers. It doesn't take into account PDD NOS diagnosis and the other spectrum disorders... ADD, Language disorders, auditory processing disorders. Also all the kids that are not in treatment because there parents are clueless that there kids have a problem.
Posted by: Maureen Durkin | January 08, 2009 at 10:32 AM
well, those founders of M.I.N.D. certainly have something to be proud of. This is huge. I hope it hits main-stream media because it certainly goes against what AAP and CDC put out. Another death knell (sp?) to the vaccine camp.
All your fighting and digging is really starting to come together!
Posted by: jen | January 08, 2009 at 10:32 AM
Thank you MIND Institute for making this study a wake up call reality for the CDC.
Dear CDC: It is beyond time for a census of all ASD - adults and children. No more guess work. No more extrapolated outdated surveys.
Posted by: Lisa | January 08, 2009 at 10:06 AM
it is worth pointing out that the CDC autism rate of 1 in 150 is now based on 7 year old data (ie recorded in 2002).
Posted by: Dan, tx | January 08, 2009 at 09:31 AM
We recall the intellectual confusion of Eric Fombonne's PEDIATRICS article reviewing the California data in 2001 (rapidly forwarded to me at the time by the UK Department of Health).
http://pediatrics.aappublications.org/cgi/content/full/107/2/411
The fallacy of Fombonne's argument - despite my inexperience at the time - was obvious: that in the absence of controlled data you may not be able to conclude with absolute certainty that there was a real rise in autism, but this did not mean that the message of the raw data was not concerning. The strategy of hiding behind the fact that no proper data had been collected was being put in place, and this strategy was also a twin project to denying that there was a link between vaccines and autism.
Posted by: John Stone | January 08, 2009 at 06:20 AM
It's about time.
I believe that most Americans would be shocked to realize that the primary agencies involved with addressing autism in our country do not acknowledge that we are experiencing a true rise in prevalence.
From the CDC’s website:
“It is clear that more children than ever before are being classified as having autism spectrum disorders (ASDs). But, it is unclear how much of this increase is due to changes in how we identify and classify ASDs in people, and how much is due to a true increase in prevalence.”
And, also from the CDC:
“Has the number of children being served under an ASD classification in public special education programs changed?
Yes. Between 1994 and 2006, the number of 6 to 17-year-old children classified as having an ASD in public special education programs increased from 22,664 to 211,610. While it is clear that more children are getting special education services for autism than ever before, it is important to remember that this classification was only added in the early 1990s. Growth in the number of children classified may be caused in part by the addition of autism as a special education category.”
The CDC also provides a history lesson:
“Autism may seem like a modern disorder, but it’s not. People have probably lived with what we know today as autism spectrum disorders throughout history. Some of the earliest published descriptions of behavior that sounds like autism date back to the 18th century. But the disorder did not have a name until the middle of the 20th century. Autism was first identified as a specific disorder in 1943 by child psychiatrist Dr. Leo Kanner. Based on a study of 11 children, Dr. Kanner published the first description of what he called “autistic disturbances of affective contact.”[3] At about the same time, German scientist Dr. Hans Asperger, based on his study of 400 children, described another form of autism that became known as Asperger syndrome.”
And, from the AAP’s website:
“Studies show that the incidence of autism has risen. The apparent increase in autism may be due to a combination of factors. For example, more and more behaviors and disorders are being included in the definition of ASD than in the past. Also, the public and the medical profession recognize these disorders more often.”
And:
“Autism has a strong genetic basis. Currently about 10 percent [the dreaded OSOTEN!] of cases are connected with genetic conditions such as Fragile X or Prader-Willi syndromes. According to a January 2008 study, researchers have discovered another genetic mutation that could account for higher risk in another 1 percent of autism cases.”
So, both the CDC and AAP both qualify that any rise in prevalence is only “apparent” and that whether any rise is real is simply “unknown.” Further, the AAP quotes the “10% genetic” figure that Mark Blaxill proved was unfounded.
Posted by: JB Handley | January 08, 2009 at 01:32 AM