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Questioning the new MIND study on prevalence of autism

By January 10, 2009

Scientific American has published an article describing the new MIND Institute study which states that environmental factors are likely behind a rise in autism diagnoses. Here's their description of the findings:
For years, many medical officials have suspected that the trend is artificial--due to changes in diagnoses or migration patterns rather than a real rise in the disorder.

But the new study concludes that those factors cannot explain most of the increase in autism....The culprits, Hertz-Picciotto said, could be "in the microbial world and in the chemical world."

Hertz-Picciotto and Lora Delwiche of the UC Davis Department of Public Health Sciences analyzed 17 years of state data that tracks developmental disabilities, and used birth records and Census Bureau data to calculate the rate of autism and age of diagnosis.

The results: Migration to the state had no effect. And changes in how and when doctors diagnose the disorder and when state officials report it can explain less than half of the increase.

Much though I would like to believe that we are finally turning a corner relative to understanding autism, I find that I'm skeptical. Of course, it may well be that autism - as it's presently understood - is caused, at least in part, by environmental factors. But I have many questions about the recent MIND study's ability to tell us definitively one way or the other. I just don't see how the numbers they've used allow us to draw the conclusions they've drawn.

Here's why.

The existing diagnoses that fall within the autism spectrum include only one - Asperger syndrome - which clearly defines whether a patient is "high" or "low" functioning. The large category of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) includes children of all levels of functioning - and certainly some doctors use the term "autism" as a general catch-all diagnosis. Without further investigation into the functioning level of individual children with "PDD," "PDD-NOS," and "Autism Spectrum" diagnoses, there's no way to know whether those children would or would not have received autism diagnoses prior to 1990. If there's no way to know, based on statistics, how many children with "higher functioning" symptoms would have been diagnosed with autism prior to 1990, how is it possible to make a useful statistical comparison?

In addition, autism has become an increasingly well-known and well-funded disorder. In the last three years, celebrities have appeared on Oprah, Larry King and numerous other talk shows to discuss their children with autism. Sanjay Gupta hosted day-long specials on autism, featuring family after family coping with the disorder. Autism Speaks is covering the nation with public service ads, star-studded events, and even Starbucks coffee cups - all intended to raise awareness of autism. Twenty years ago, autism was a blip on the medical horizon. Today it's front and center, discussed on every TV, radio, and computer monitor. Is it really possible that such media saturation has no impact on rates of diagnosis? And assuming there has been an impact, is it really possible to measure that impact?

Schools are overwhelmed with children diagnosed on the autism spectrum. In part, that's because a new category CALLED "autism" was created by the Department of Education during the 1990's. Before that time, there was no category for autism - so no children with autism were recorded as attending public school. As a result, there is no useful way to actually compare autism rates in schools today with those in, say, the late 1980's. In fact, the only way to make that comparison would be to literally review the records of individual children who might have been described as trouble-makers, mildly mentally retarded, speech delayed, behavior problems, and so forth - and compare their actual symptoms to today's autism spectrum criteria.

Lastly, MIND researchers have gone on record as saying their new study suggests that environmental (as opposed to genetic) factors are to blame for autism. Of course, it's perfectly possible that environmental factors are behind at least some cases of autism. But it's hard to see that this particular study has anything to say about the possible impact of, for example, antibacterial soap (a potential causative factor which Hertz-Picciotto mentioned in an interview).

Autism, today, impacts an enormous range of individuals. My guess is that the very wide range of symptoms we now call autism have many causes... many effective treatments... and probably some cures. The researchers behind the MIND study feel that their findings support more robust research into environmental factors - and such research certainly would be a good thing. But I am not at all sure that the recent MIND study can tell us a great deal about causes, treatments or cures. In fact, I'm not completely certain what it does tell us.

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Comments
January 10, 2009 at 10:12 am
(1) AutismNewsBeat says:

Your skepticism is well placed, Lisa.

January 10, 2009 at 11:24 am
(2) Harold L Doherty says:

Real skepticism, skepticism which helps discipline inquiry into all possible causes of autism is excellent. Unfortunately autism research has been cursed by public health authorities who have discouraged the type of environmental research that is needed to conduct a full and proper inquiry into the causes of autism disorders.

Neurodiversity advocates guided not by a desire to understand actual causes of autism but by an ideological agenda which requires autism to be considered 100% genetic do not actually embrace healthy skepticism. They simply digress, divert and trivialize real discussion and investigation of these serious issues.

The recent UC Davis Mind study is a step forward in developing a credible autism research paradigm, on which investigates genetic-environmental interaction.

We do not exist without our genetic makeup. We do not exist outside of our environment. Time to put aside the ideology and do the research on all causes of autism.

January 10, 2009 at 11:26 am
(3) Sandy says:

from another article
http://www.webmd.com/brain/autism/news/20090108/autism-cases-rise
“Hertz-Picciotto notes that her study does not account for one potentially huge artifact: The fact that today’s parents are vastly more aware of autism than they were a decade ago.

Autism can’t be diagnosed unless you’re looking for it — so parent awareness has a huge potential effect on the rise of autism, says Gary W. Goldstein, president and CEO of the Kennedy Krieger Institute and professor of environmental health sciences at Johns Hopkins University.

“There is an enormous increase in awareness. Everybody knows about autism now, and they didn’t 16 years ago,” Goldstein tells WebMD.

“The awareness thing is very hard to quantify,” Hertz-Picciotto says. “But at some point, as more and more parents became aware of autism, the increase should have leveled off. Instead we see a continued increase in autism.”

“”Time is passing and science has a lot to do to find the real causes of autism,” she says (Hertz-Picciotto). “A lot has changed in the environment over the last 10 to 15 years. And I paint with a broad brush when I say environment: These changes include things like medications people take and assisted reproduction technology as well as what is in soaps and pet shampoos and toothpaste and so forth.”

In Jan. 2007, there was an article talked about the autism increase in CA, not falling which reflects Thimerosal.

It would be difficult to exclude awareness as part of the increase and this study does not show how they excluded that. Also, only looking at birth records to tell migration is not accurate either. Parents move all the time and then move again.

January 10, 2009 at 12:30 pm
(4) Kristina Chew says:

There’s a huge disconnect between what the media is saying about the new study and what the authors actually write in it. They do not mention the environment.

January 10, 2009 at 1:17 pm
(5) Bonnu says:

I believe Autism occurs in children by many venues, but what occurs in any of these venues is like what happens when a butterfly is helped out of its cocoon to soon…if anything, anything interrupts the natural growth process in a child’s gestation period especially at a specific point of that process it will leave the neurological difference called Autism.Whether it is done in the form environmental poisonings eg:lead poisoning, medication poisoning (immunizations,medications given to the mother during pregnancy, mercury in fish etc.)

January 10, 2009 at 2:10 pm
(6) Bill says:

I am professionally diagnosed with Asperger’s. I am reasonably convinced that some of my siblings and children, had autism been “on the radar”, would have received diagnoses of autism because of their delayed language and odd behavior. Today we may or may not have the Asperger’s label, depending on whether or not we have crossed paths with mental health professionals or the law. I myself only received a diagnosis after seeking help for debilitating hyperekplexia.
One of my brothers has also been professionally diagnosed, but based on my familiarity with autism and Asperger’s after studying the literature and news for years, within my extended family, these two diagnoses are only the tip of the iceberg in my family. (And anecdotal information seems to point to eccentricities going back generations).
I Google news on autism/Asperger’s every single day of the week, and have for many years, and not once have I seen any call, any systematic effort, to determine how many people with Asperger’s, or “mature” autism, are running around, much less how many undiagnosed Asperger’s neurotypes are running around. Based on the engineering firms I have worked for in my career, I estimate at least 25% of engineers are Asperger’s neurotypes, whether they realize it or not. I think the percentage is even higher among software and IT professionals. Even if I was overestimating (though I am trying to be conservative in my estimates), the numbers of undiagnosed Asperger’s/”mature” autism is staggering. Clearly, these folk were not counted in the cited study.
I recall a study a few years ago where someone came to the conclusion that autism numbers had risen proportionately to the decline in “retarded” and other similar mental handicap numbers in the government databases. It seems to make sense to me, and the thing that clinches it for me is the apparent lack of increase in beds in mental health facilities. If we were having a surge in people too disabled to function in society, we should have started seeing a surge in mental institution beds. I haven’t seen it in my community, and I haven’t seen it in the news articles I Google every day. I do see articles about new programs tailored for autism, but not beds in institutions. In fact I will take some of the “whiners” out there at their word, that the number of beds in institutions has actually declined, and many of the people who used to be in institutions are now street people. The other major statistical nightmare, something which makes anyone educated in the mathematics of statistics cringe, is the thirteen year lag. You see, we count the autists as they enter the system, or as they are diagnosed while in the system, but we have not gone enough years for the count to level off as equal numbers exit the system when they graduate 13 years later. We had never even heard of Asperger’s before 1994; that is only 15 years ago, and it took years for the learning curve to set in and increase the number of autism/Asperge’s diagnoses. The total numbers of people in the system with autism/Asperger’s will not level off until 13 years after the learning curve levels off, and the learning curve is far from leveling off yet!
Based on the devastating effect revealing I had Asperger’s had on my peer relationships at a previous job, I will never again reveal I have Asperger’s publicly. I cannot write to my local newspaper with opinions on the subject, since I dare not have my name printed. Unlike the mother’s of autistic children, many of us who actually have it must be silent and only outspoken in an anonymous venue like this website. We are out here, but not counted, and we certainly were not counted in the UC Davis study.

January 10, 2009 at 3:08 pm
(7) Joe says:

Bobby Kennedy Jr. said it best, “missing a kid with autism is like missing a train wreck”. The psychiatrists and genetics people are going to keep control. They are addicted to the the money and the power. LJ and Kristina, you are fools. Stop speaking for our children. You people are unbeleivable.

January 10, 2009 at 3:15 pm
(8) Sandy says:

Well, a good point is within the school systems nationally, the decline in the MR IEP and increase of the autism IEP. This is public info and why that is not considered or acknlowdged in this recent study is odd. Also, the school system is flawed in many ways to use it for a bases of any study. CA. is one of them.

Another good point is many who had the MR IEP and now are adults who have an accurate diagnosis. Years prior, parents sent their kids away and the next generation of parents kept their kids home and in the school system. All of these things account of a rise in the rates.

January 10, 2009 at 3:18 pm
(9) autism says:

Joe, I’m not sure I understand your point.

Are you saying that the symptoms of autism are so obvious and unique that they could never be missed or mistaken for anything else?

Or are you saying that anyone who has subtle symptoms should not be diagnosed on the autism spectrum?

Or both?

Either way, I think you may be reflecting the ongoing issue we face: the autism spectrum is incredibly broad.

Many people with subtle symptoms (difficulty with eye contact, pragmatic speech delays, social/communication deficits) are being diagnosed on the spectrum – both as children and as adults. And those subtle symptoms would certainly never have been diagnosed as “autism” 20 years ago.

At the same time, I really do suspect there are quite a few people with “autism-like” symptoms who are actually suffering from curable disorders that look like but are not the same thing as autism.

Lisa (autism guide)

January 10, 2009 at 3:20 pm
(10) Terry says:

Goldstein, Gernsbacher, Feinberg, Fombonne, Offit, Feinstein, Cohen, Feldman, Edelman etc. Who are these people who hold our kids hostage? What is the motive?

January 10, 2009 at 3:45 pm
(11) autism says:

Terry – not sure why that particular list of names, or how you feel they are holding children hostage… can you explain?

Lisa (autism guide)

January 10, 2009 at 5:12 pm
(12) AutismNewsBeat says:

Joe and Terry have no point. They are just reading from a script.

The evidence against a vaccine-autism connection is overwhelming. And for all the speculation about an “evironmental trigger”, none has been found. And it’s far from settled that we are in the throes of an autism epidemic.

January 10, 2009 at 8:57 pm
(13) Sandy says:

Hertz-Picciotto really wasn’t including vaccines to their findings, they were actually talking about a very broading environmental trigger than that.

Autism has no easy answers to causes. Now had Terry said “my kids hostage” would be one thing, but “our kids hostage” is another and my child is no hostage to any disorder. I will never believe autism was intentially caused by any one.

January 10, 2009 at 9:01 pm
(14) nhokkanen says:

Why not ask Irva Hertz-Picciotto and Rick Rollens directly about the study? The contact phone number is on the press release. Ask whether California only gives autism services to the most seriously affected children. That limit would explain why state officials are certain there has been no major diagnostic expansion in that specific cohort.

January 10, 2009 at 9:38 pm
(15) old sped professional says:

Parents and professionals looking at the epidemiology and possible causes have got to remember that diagnosing Autism is a fairly new thing. Years ago, in the 80′s, we didn’t have Autistic kids the way we do now. We had kids with the same variety of symptoms and severity but the labels were all over the map. Children/adults who would be labelled on the spectrum today might be quirky or odd and that’s it to severely involoved SMI/SXI.
There is no question that there is an increase in autism but it is a mistake to believe that it just appeared in the last 15-10 years out of no where.

January 10, 2009 at 10:39 pm
(16) autism says:

Nhokkanen – your suggestion to get in touch with the researchers is a good one, and I will follow up.

Meanwhile, though, you say “Ask whether California only gives autism services to the most seriously affected children. That limit would explain why state officials are certain there has been no major diagnostic expansion in that specific cohort.” I’ve begun looking into this, but can’t find any information through the state of CA that suggests that there are limitations to who receives services. Across the board, the state info sites say that services are provided in regional centers and in schools to “children with autism” – not to children with “severe” or “profound” autism.

Can anyone provide a link or citation showing that CA does not, for example, provide services for individuals with PDD-NOS or Asperger syndrome diagnoses?

Lisa (autism guide)

January 10, 2009 at 10:54 pm
(17) autism says:

Following up on my prior comment – I have been searching through CA info, and found this information on eligibility for services at developmental disability regional centers in the state (at http://www.altaregional.org/eligibilityInfo/):

Children and adults who have a developmental disability and who are substantially disabled because of the developmental disability are eligible for services from Alta California Regional Center. A developmental disability is defined in state and federal law as mental retardation, cerebral palsy, epilepsy, and autism.

Reading this, and the related information, it looks to me like any child with an autism spectrum diagnosis would be eligible for services – because the only exceptions are for disabilities that are solely learning disabilities, psychiatric disorders, or physical disorders.

I suppose that if a child were to be diagnosed with autism and yet have no significant delays or impairments then they wouldn’t be eligible. But if they had no significant delays or impairments, I can’t imagine why they’d receive any kind of an autism diagnosis…

Lisa (autism guide)

January 10, 2009 at 11:42 pm
(18) Sandy says:

REQUIREMENTS FOR REGIONAL CENTER ELIGIBILITY CA.

http://www.feat.org/LinkClick.aspx?fileticket=ZTjHeSToN3M%3D

all anyone has to do is speak to parents who live in CA and deal with regional centers there.

January 11, 2009 at 12:10 am
(19) Sandy says:

In 2003 CA. had a criteria change to Federal standards. This change alone could effect how Regional centers accepted or denied children.
http://www.dds.ca.gov/Statutes/WICSectionView.cfm?Section=4500-4519.7.htm&anchor=4512#4512
(l) “Substantial disability” means the existence of significant
functional limitations in three or more of the following areas of
major life activity, as determined by a regional center, and as
appropriate to the age of the person:
(1) Self-care.
(2) Receptive and expressive language.
(3) Learning.
(4) Mobility.
(5) Self-direction.
(6) Capacity for independent living.
(7) Economic self-sufficiency.
Any reassessment of substantial disability for purposes of
continuing eligibility shall utilize the same criteria under which
the individual was originally made eligible.

January 11, 2009 at 8:22 am
(20) autism says:

It sounds like it can be a project to get services through CA’s regional centers – as is the case, BTW, in many states for a variety of reasons. Very frustrating.

Re this particular study, though, I’m not sure that this issue is terribly relevant. The study did make use of Department of Developmental Services info, but ALSO made use of various other data. From what I can tell so far, there’s no particular reference to whether or not individuals qualified for services:

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.

January 11, 2009 at 10:59 am
(21) Joe says:

“Goldstein, Gernsbacher, Feinberg, Fombonne, Offit, Feinstein, Cohen, Feldman, Edelman etc.” These psychiatrists/psychologists/vaccine profiteers make big money by keeping the autism lies alive. How do they keep our children held hostage? By contoling the money and debate. Our children cannot recieve the rightful medical care until this changes. Don’t hold your breath. So, vaccines cannot cause autism hey:

“There is this little girl named Hannah. Through eighteen months, Hannah’s
pediatrician notes she is meeting all developmental milestones a
normal developing child. At nineteen months, Hannah gets taken to the
pediatrician and she gets five shots in one
visit: DTaP, Hib, MMR, Varivax, and IPV. A five shot visit? In the
U.S., this happens thousands of times a day.

Suddenly, things for Hannah change. I’ll let the now-famous, 2008 court document tell the story from here:

“According to her mother’s affidavit, Hannah developed a fever of
102.3 degrees two days after her immunizations and was lethargic,
irritable, and cried for long periods of time. She exhibited
intermittent, high-pitched screaming and a decreased response to
stimuli. The mother spoke with the pediatrician, who told her that Hannah
was having a normal reaction to her immunizations. According to
Hannah’s mother, this behavior continued over the next ten days, and
Hannah also began to arch her back when she cried.

On July 31, 2000, Hannah presented to the Pediatric Center with a
101-102 degree temperature, a diminished appetite, and small red dots
on her chest. The nurse practitioner recorded that Hannah was
extremely irritable and inconsolable. She was diagnosed with a
post-varicella vaccination rash.

Two months later, on September 26, 2000, Hannah returned to the
Pediatric Center with a temperature of 102 degrees, diarrhea, nasal
discharge, a reduced appetite, and pulling at her left ear. Two days
later, on September 28, 2000, Hannah was again seen at the Pediatric
Center because her diarrhea continued, she was congested, and her
mother reported that Hannah was crying during urination. On November
1, 2000, Hannah received bilateral PE tubes. On November 13, 2000, a
physician at ENT Associates noted that Hannah was “obviously hearing
better” and her audiogram was normal. On November 27, 2000, Hannah was
seen at the Pediatric Center with complaints of diarrhea, vomiting,
diminished energy, fever, and a rash on her cheek. At a follow-up
visit, on December 14, 2000, the doctor noted that Hannah had a
possible speech delay.

Hannah was evaluated at the Howard County Infants and Toddlers
Program, on November 17, 2000, and November 28, 2000, due to concerns
about her language development. The assessment team observed deficits
in Hannah’s communication and social development. Hannah’s mother
reported that Hannah had become less responsive to verbal direction in
the previous four months and had lost some language skills.

On December 21, 2000, Hannah returned to ENT Associates because of an
obstruction in her right ear and fussiness. Dr. Grace Matesic
identified a middle ear effusion and recorded that Hannah was having
some balance issues and not progressing with her speech. On December
27, 2000, Hannah visited ENT Associates, where Dr. Grace Matesic
observed that Hannah’s left PE tube was obstructed with crust. The
tube was replaced on January 17, 2001.

Dr. Andrew Zimmerman, a pediatric neurologist, evaluated Hannah at the
Kennedy Krieger Children’s Hospital Neurology Clinic (“Krieger
Institute”), on February 8, 2001. Dr. Zimmerman reported that after
Hannah’s immunizations of July 19, 2000, an “encephalopathy progressed
to persistent loss of previously acquired language, eye contact, and
relatedness.” He noted a disruption in Hannah’s sleep patterns,
persistent screaming and arching, the development of pica to foreign
objects, and loose stools. Dr. Zimmerman observed that Hannah watched
the fluorescent lights repeatedly during the examination and would not
make eye contact. He diagnosed Hannah with “regressive encephalopathy
with features consistent with an autistic spectrum disorder, following
normal development.” Dr. Zimmerman ordered genetic testing, a magnetic
resonance imaging test (“MRI”), and an electroencephalogram (“EEG”).”

How many millions of Hannahs will it take before our medical industry take responsibility for what they’ve done?

January 14, 2009 at 2:28 pm
(22) ANB says:

Joe, do you know if Dr. Zimmerman has been given permission by the family to release Hannah’s medical records?

January 15, 2009 at 1:46 pm
(23) Joe says:

Ken, (ANB) This is a public document generated when the government (HHS) conceded that Hannah’s autism was caused by vaccines. As usual, you ignore the message and try to find something totally irrelevant to obfuscate the real issue.

January 15, 2009 at 8:19 pm
(24) maggiw says:

Joe, i read the article about Hannah, it’s something of the same that i think happen to my son, who is autistic, age 10. Not only that a similiar case to my son with going back and to the doctors and hospitals with the same syptoms as Hannah and with the same case with the shots. but my son was born premature on feeding tubes, oxygen tank and was given his first shots. he really never had eye contact nor responding to noises, or voices. the same thing about the ears and the tubes put in the ear loss of hearing, the doctors were treating him like a regular kid with normal sickness. it was me being persisted to say that something was wrong, he’s not responding to my voice, late in development stages, etc. i was told that i was spoiling him with kisses and hugs and holding him to much. one night he cried for 7 hours between home and at the hospital emergency room with no service in helping us. the ball start rolling after he received a hearing test and then evaluations from the county, and children’s hospital. my son was diagnosed between 1 1/2-2 1/2 years old. everything was always overlooked, because we have to think that the doctors know it all. not true at all. the doctors that i dealt with 10 years ago had no idea about what was going on. and now i have to deal with the school system, which is another confusion issue. and it pisses me off when the super stars are all over the media because of what they deal with. i don’t feel that they should be speaking for us little people. they have money, better resources, they can have home therapy everything they want around the clock. so now that this is happening to them it matters. very poor. someone needs to educate resources in order to provide continous help for when these kids get older and the parents are limited to take care of them. it’s sad to think about what will happen to my son, where will he be breaks my heart. also, i wish that the doctors would educate the school personnel on what the kids need to be doing in order to help themselves. there is alot of work to be done, but who is going to do it.

January 16, 2009 at 6:15 pm
(25) ANB says:

HHS has not conceded a causal link between vaccines and autism. All that can be said is that Hannah “has a regressive neurological disorder that includes blood and muscle abnormalities not seen in autism, and any clinical resemblance to autism is not a reflection of a common cause.” Dr. Steven Novella explains it very well here:

http://www.theness.com/neurologicablog/index.php?p=203

My question is relevant. The Polings told me last May that they had no plans to release the records. I’m just asking if anything has changed.

There’s no need to shut down the discussion, Joe. What are you afraid of, anyway? The truth?

January 17, 2009 at 1:16 pm
(26) Joe says:

I’m afraid of the truth Ken (ANB)? I consider a signed affidavit to be much more truthful than anything else I’ve read here.

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