SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Wednesday, January 1, 2003

RESEARCH – SPECIAL FOCUS ISSUE

* The Prevalence of Autism

* Prevalence of Autism Growing, Study Finds: NY Times

* Autism Prevalence in Rhode Island

* UC Davis Scientists To Study Potential Causes Of Autism

MEDIA ALERT

* "The Point" Reruns on NPR Wednesday, Jan. 1, 1pm Eastern

LETTERS

* Dan Burton Questioning a Mercury Link To Autism

* The Myth of Myths

READERS' POSTS

RESEARCH – SPECIAL FOCUS ISSUE

The Prevalence of Autism

The number of epidemiological studies of autism has increased in recent years, including in the United States, where investigators are now catching up in what has traditionally been a weak area of child psychiatric research in North America. In this issue of THE JOURNAL, Yeargin-Allsopp et al1 report the findings of a survey, which was funded by the Centers for Disease Control and Prevention, that found a rate of 34 per 10 000 for autism spectrum disorders (ASDs) among 3- to 10-year-old children in metropolitan Atlanta.

The strengths of the survey include use of multiple ascertainment sources and large sample size (ie, 987 confirmed ASD cases compared with a median sample size of 50 in 32 previous studies),2 thereby allowing the authors to have good precision in the estimates and to conduct meaningful subgroup analyses. In addition, this study is the first to derive a robust population-based estimate for the rate of ASD in black children, which is comparable to other racial groups.

Other findings are typical of those found in previous surveys with ASD cases, with a strong overrepresentation of boys, cognitive impairments in more than two thirds of cases, and a relatively high rate (8%) of epilepsy. Approximately 18% of the sample did not have a previous diagnosis or were not suspected of having ASD, and children from black, younger, or less educated mothers were more often identified through schools as the only source of case finding. These findings highlight the need to rely on multiple ascertainment sources in epidemiological studies of ASD and caution against findings that are based on single service provider databases.

The prevalence rate of 34 per 10 000 is, however, likely to be an underestimate. First, as the authors point out, children with milder or high-functioning (ie, normal IQ) ASD subtypes are likely to have been missed. Second, the lower prevalence in 3- and 4-year-olds may reflect lower sensitivity of case identification among younger children for developmental disorders that often are diagnosed later. Third, there was an unexpected decrease in prevalence among 9- and 10-year-olds. Although it would be tempting to interpret this age trend as indicative of a secular increase in the rate of ASD (ie, the younger the birth cohort, the higher the prevalence), such an explanation is both unlikely and biologically implausible because rates plateaued for birth cohorts aged 5 through 8. Rather, the authors suggest that these differences might reflect new diagnostic criteria for autism and increased availability of developmental disability services for children with autism in the 1990s. What this means, however, is that the rate of 41 to 45 in 10 000 obtained for the 5- to 8-year-olds might be more accurate. This rate also is more in line with those of 3 recent surveys that yielded prevalence estimates in the range of 60 per 10 000.3-5

High prevalence rates from more recent epidemiological surveys have fueled the debate about a possible epidemic of autism. However, 4 separate issues need to be addressed. The first issue concerns the best current estimate for the prevalence of autism and related disorders. Increasing and consistent evidence from recent surveys shows that the prevalence rate for ASDs (including not only autism disorder but also Asperger disorder and pervasive developmental disorder–not otherwise specified) is approximately 60 per 10 0003-5; the study results from Yeargin-Allsopp et al concur with this conclusion. This estimate translates to approximately 425 000 children younger than age 18 years with ASDs in the United States, including 114 000 children younger than 5 years.

The second issue is whether the prevalence of ASD has increased over time. Surveys conducted in the 1960s and 1970s only dealt with autism disorder (as opposed to ASD) and with a rather narrow definition of autism, as per Kanner's descriptions,6 and not accounting for autism occurring in subjects who are not mentally retarded. Thus, comparisons of rates over time generally deal with studies that have used different case definitions, making interpretation of time trends difficult. The closest estimate of ASD prevalence available in the late 1970s was 20 per 10 000 in a survey from the United Kingdom that was limited to the severely impaired children with ASD.7 Comparing rates for subtypes of ASD provide another avenue for estimation over time especially for autism disorder, but as shown by Yeargin-Allsopp et al1 and other surveys,3-5 the breakdown in ASD subtypes is not always reliable. Nevertheless, rates of autism disorder in recent surveys have consistently been more than 10 per 10 000 whereas previous prevalence estimates ranged from 4 to 5 in 10 000.2 Therefore, from the available evidence it can be concluded that recent rates for both ASD and autism disorder are 3 to 4 times higher than 30 years ago.

The third issue addresses possible interpretations of this increase in prevalence. That is, does this increase reflect a broadening of the concept of ASD with more inclusive diagnostic criteria and improved methods of case finding in population surveys? It is generally agreed that the definition of autism has been broadened over the last decades, particularly at the less severe end of the spectrum. These major changes occurred in nosology from the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III)8 in 1980 to the DSM-Revised Third Edition9 in 1987 and the DSM, Fourth Edition10 in 1994. Kanner's infantile autism6 was replaced in 1980 by the concept of pervasive developmental disorder. Among the pervasive developmental disorders, pervasive developmental disorder–not otherwise specified (or atypical autism) has now become the most widely used ASD diagnosis, and Asperger disorder emerged as a new diagnostic category in the 1990s. Unless comparisons also control rigorously for changing case definitions, interpretation of differences in prevalence rates over time and across surveys will be virtually impossible.

Moreover, there is strong evidence that differences in methods for case finding can account for a huge proportion of the variability of prevalence estimates between surveys. For example, in 4 US and 4 UK studies published recently, 14- and 6-fold variations in prevalence rates were found, respectively.2 Although these 2 sets of studies were conducted at the same time, in similar age groups, and in the same countries, the lack of consistency in estimates is striking and demonstrates how unique design features within each study can affect the prevalence estimation. In both countries, studies relying on single administrative sources for identifying cases yielded low estimates, whereas investigations using proactive methods for case finding, that is, multiple sources of ascertainment and direct diagnostic procedures, yielded much higher rates. Needless to say, comparisons of population surveys over time are bound to be even more confounded by factors difficult to control.

Referral statistics also have been used to evaluate trends over time, but these data are confounded by changes over time in factors such as referral patterns, availability of services, public and professional awareness, age at diagnosis, and diagnostic concepts and practices. For example, the report from the Department of Developmental Services, Sacramento, Calif,11 showed an increase in the number of children receiving public services, but it failed to adjust for key factors, such as changes in population size, diagnostic practices, or differential migration.12 Another widely publicized report on children enrolled in this public service system concluded that "some, if not all, of the observed increase represents a true increase in cases of autism in California."13(p42) Yet, the authors stated earlier in this report that "Improved case finding could result in an apparent increase in the number of cases. . . . This study does not examine the extent to which differences in case finding over time have resulted in any changes in the number of autistic children who present to the Regional

Centers."13(p13)

By contrast, a recent reanalysis of this dataset indicated that during 1987 to 1994, diagnostic substitution occurred; thus, while the prevalence of autism increased from 5.8 to 14.9 per 10 000, the prevalence for mental retardation decreased from 28.8 to 19.5 per 10 000. These trends then cancel each other.14 According to the authors, new federal legislation (Individuals with Disabilities Education Act15) mandating that states provide early intervention programs for toddlers with developmental delays played a role in the increasing use of the diagnosis of autism. Moreover, in the last 15 years evidence has accumulated for the effectiveness of early intensive behavioral interventions for autism,16 and most families could not support their high costs outside the public service delivery system. Thus, there is good evidence to support that higher prevalence rates reflect changes in diagnostic practices, improved identification and availability of services, and other similar factors.

The fourth issue involves the hypothesis of an increasing trend in the incidence of ASD. Whereas evidence exists that a substantial part of the increase in prevalence is due to methodological factors, the additional possibility of a secular increase in the incidence of autism cannot be ruled out. Unfortunately, most available epidemiological data are derived from prevalence surveys, and the few studies that provide incidence rate estimates have not been adequate to test this hypothesis. In addition, no strong candidate environmental exposures have been identified. Claims of an association with measles-mumps-rubella immunization have not been borne out by recent studies,17-19 and evidence for causal association with other exposures, such as mercury-containing vaccines, is weak.20, 21

Extending the already substantial research effort, the Centers for Disease Control and Prevention has recently funded a surveillance network across several states.22 This and other initiatives should help address more directly hypotheses about secular changes in the incidence of ASDs.

Finally, the current social context seems to exert a stronger influence on the debate than the scientific arguments. Although claims about an epidemic of autism and about its putative causes have the most weak empirical support, the subsequent controversy has put autism on the public agenda. In recent years, children with autism, their families, and professionals involved in their care and in research have seen welcome and legitimate increases in public funding. Yet, ironically, what has triggered substantial social policy changes in autism appears to have little connection with the state of the science. Whether this will continue to be the case in the future remains to be seen, but further consideration should be given to how and to why the least evidence-based claims have achieved such impressive changes in funding policy. Author/Article Information

Author Affiliation: McGill University and Montreal Children's Hospital, Montreal, Quebec.

Corresponding Author and Reprints: Eric Fombonne, Montreal Children's Hospital, 4018 St Catherine W, Montreal, Quebec, Canada (e-mail: eric.fombonne@mcgill.ca). Editorials represent the opinions of the authors and THE JOURNAL and not those of the American Medical Association.

References

1. Yeargin-Allsopp M, Rice C, Karapurkan T, Doernberg N, Boyle C, Murphy C. Prevalence of autism in a US metropolitan area. JAMA. 2003;289:49-55.

2. Fombonne E. Epidemiological trends in rates of autism. Mol Psychiatry. 2002;7(suppl 2): S4-S6.

3. Baird G, Chairman T, Baron-Cohen S, et al.

A screening instrument for autism at 18 months of age: a 6 year follow-up study. J Am Acad Child Adolesc Psychiatry. 2000;39:694-702.

4. Chakrabarti S, Fombonne E.

Pervasive developmental disorders in preschool children.

JAMA. 2001;285:3093-3099.

5. Bertrand J, Mars A, Boyle C, Bove F, Yeargin-Allsopp M, Decoufle P. Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics. 2001;108:1155-1161. MEDLINE

6. Kanner L. Autistic disturbances of affective contact. Nervous Child. 1943;2:217-250.

7. Wing L, Gould J.

Severe impairments of social interactions and associated abnormalities in

children: epidemiology and classification. J Autism Dev Disord. March 9, 1979:11-29.

8. American Psychiatric Association.

Diagnostic and Statistical Manual of Mental Disorders, Third Edition. Washington, DC: American Psychiatric Association; 1980.

9. American Psychiatric Association.

Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition. Washington, DC: American Psychiatric Association; 1987.

10. American Psychiatric Association.

Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, DC: American Psychiatric Association; 1994.

11. Department of Developmental Services.

12. Fombonne E.

Is there an epidemic of autism?

Pediatrics. 2001;107:411-413.

13. Report to the Legislature on the Principal Findings from the Epidemiology of Autism in California. A Comprehensive Pilot Study. Davis, Ca: M.I.N.D. Institute, University of California, Davis; October 17, 2002.

14. Croen LA, Grether JK, Hoogstrate J, Selvin S.

The changing prevalence of autism in California.

J Autism Dev Disord. 2002;32:207-215.

15. The Education for All Handicapped Children Act of 1975. Pub L No. 94-145, 20 USC 1401 et seq. Federal Register. August 23, 1977; 42(163):42474-42518.

16. Rogers S.

Empirically supported comprehensive treatments for young children with autism. J Clin Child Psychol. 1998;27:168-179.

17. Fombonne E, Chakrabarti S.

No evidence for a new variant of measles-mumps-rubella-induced autism. Pediatrics. 2001;108:E58.

18. Madsen KM, Hviid A, Vestergaard M, et al.

A population-based study of measles, mumps, and rubella vaccination and autism. N Engl J Med. 2002;347:1477-1482. 19. Taylor B, Miller E, Lingam R, Andrews N, Simmons A, Stowe J. Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study. BMJ. 2002;324:393-396.

20. Stratton K, ed, Gable A, ed, McCormick MC, ed. Immunization Safety Review Committee: Thimerosal-Containing Vaccines and Neurodevelopmental Disorders. Washington, DC: National Academies, Institute of Medicine; 2001.

21. Pichichero ME, Cernichiari E, Lopreiato J, Treanor J. Mercury concentrations and metabolism in infants receiving vaccines containing thiomersal: a descriptive study. Lancet. 2002;360:1737-1741.

Accessed December 10, 2002.

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

Prevalence of Autism Growing, Study Finds: NY Times

52dd0b5fbbbe89&ei=5062&partner=GOOGLE

Autism is about 10 times more prevalent today than it was in the 1980's, according to the largest United States study ever on the problem. Some of the increase can be explained by widened definitions of the disorder, the researchers said, but the explanation for the rest of the increase is unknown.

The study, conducted in metropolitan Atlanta in 1996, found that 3.4 in every 1,000 children between the ages of 3 and 10 had diagnoses of mild to severe autism during that year. In the late 1980's, 4 to 5 out of every 10,000 children were thought to be afflicted.

The higher prevalence rate, described in today's issue of the Journal of the American Medical Association, is in line with rates found in recent but smaller studies here and abroad in which the prevalence rate of autism is 4 to 6 out of every 1,000 children.

The researchers, from the federal Centers for Disease Control and Prevention, said the prevalence rates they found would mean that at least 425,000 American children under age 18 have some form of autism, including 114,000 children under age 5.

Dr. Marshalyn Yeargin-Allsop, an epidemiologist at the National Center on Birth Defects and Developmental Disabilities, led the new study which was carried out in the federal agency's backyard of metropolitan Atlanta.

Some of the increased prevalence can be explained by changes in the definition of autism, a brain disorder in which normal social interaction is difficult or impossible. In recent years, the definition has been widened to include milder forms of the disorder.

Most experts believe autism results from an interplay of genes and unknown environmental factors. "No strong candidate environmental exposures have been identified," said Dr. Eric Fombonne, an autism expert at McGill University and the Montreal Children's Hospital in Quebec. "Claims of an association with measles-mumps-rubella immunization have not been borne out by recent studies, and evidence for causal association with other exposures, such as mercury containing vaccines, is weak."

Portia Iversen, the mother of an autistic child and the co-founder of Cure Autism Now, an advocacy group in Los Angeles, said the findings reported today were not surprising. "We are in the midst of an autism epidemic in this country," she said. We need the government to step in and take emergency action."

Dr. Yeargin-Allsop said the researchers canvassed schools, clinics, physicians, non-profit programs and other places autistic children might go for services in 1996. Studies that look at autistic children in just one setting, such as special clinics, tend to find lower prevalence rates, she said.

Experts reviewed the medical records of each child and determined if autism was diagnosed accurately. They did not examine the children in person. Out of the 289,456 children between the ages of 3 and 10 years living in the five counties of metropolitan Atlanta in 1996, 987 had mild to severe autism, giving a prevalence rate of 3.4 per thousand.

Dr. Yeargin-Allsop said 18 percent of the children found to have autism in 1996 had never been diagnosed accurately. Many were classified as having general developmental difficulties whereas higher functioning children were missed entirely.

The Atlanta study found that prevalence rates were the same for black and white children, but confirmed earlier studies that autism is four times more common in boys than in girls.

Dr. Yeargin-Allsop said the federal agency is conducting similar surveillance studies across several states to provide a more complete picture of autism.

Autism Resource

* The Autism Calendar: Subscribe Free (without daily reports)

* * *

Autism Revalence in Rhode Island

Rhode Island, the smallest state in the USA, is affectionately called “Little Rhody”. Total population in the year 2000, was 1,048,319 according to the Census Bureau. Rhode Island has 1,214 square miles in all, with a land area of 1,054 square miles or 674,560 acres. There are twelve national parks larger than Rhode Island, and the city of Los Angeles has nearly 1,000 more miles of paved roads than the whole ”Ocean State”.

Regardless of size, Rhode Island is a great state. It has a beautiful domed State House and many historical landmarks which include the First Baptist Church and the Torah Synagogue, the oldest in the Nation. Its cities are colorful enough to have been the location of movies, a television series and the America’s Cup. The disproportionately long shoreline (384 miles) is breathtaking, and visitors can never forget Narragansett Bay, Point Judith, Ocean Drive and the many beautiful beaches. Rhode Island is proud of its very own Narragansett Indian tribe. This little state is home to Brown University, Bryant College, Community College of Rhode Island, Johnson & Wales University, New England Institute of Technology, Providence College, Rhode Island College, Rhode Island School of Design, Roger Williams University, Salve Regina University and the University of Rhode Island. It also has the Friars, the Rams, the Pawtucket Red Sox and the Providence Bruins.

Unfortunately, Rhode Island may now have a distinction it did not

seek: A disproportionately large number of children with autism per capita.

The Special Education Census published yearly by the Rhode Island Department of Education (DOE) lists 14 categories of primary disabilities, by school district. Two categories, Autism and Behavior Disorders (BD) have risen sharply of late.

Autism has increased by 1,115 % between 1994 and 2002 in Rhode Island schools. [Graphic of increase.]

On June 30, 1994, there were 41 students with the diagnosis of autism in Rhode Island schools. By June 30, 2002, that number had risen to 498, not including two in Charter Schools. Behavior disorders also markedly increased, as mentioned. The following table shows the recent rise in both categories compared to all disabilities.

Last School Year 06/30/2001 06/30/2002 % Increase

Autism 407 498 23.35%

Behavior Disorders 2,583 2,848 10.25%

All Disabilities 31,793 32,789 3.13%

Last 4 School Years 06/30/2001 06/30/2002 % Increase

Autism 197 498 53%

Behavior Disorders 2,035 2,848 40%

All Disabilities 28,558 32,789 14.8%

This increase in autism is real and is NOT due to better diagnosis. The more restrictive criteria of DSM IV have been exclusively used since 1994 and have remained unchanged. Rhode Island has ONE main center where cases are usually evaluated, ONE pediatric psychiatric hospital, and FEW pediatric neurologists, developmental pediatricians and pediatric psychiatrists. School departments, which are overwhelmed, are not likely to accept the diagnosis of autism lightly and it is possible that high functioning and/or less affected children may be watched with a Behavior Disorder or Speech Defect label.

School Districts with 10 or more cases of Autism

City or Town Cases Population

Pawtucket 55 72,958

Warwick 34 85,808

Providence 31 173,618

Westerly 25 22,966

Cranston 24 79,269

East Providence 24 48,688

Cumberland 23 31,840

East Greenwich 21 12,948

Lincoln 21 20,898

South Kingston 21 27,921

Portsmouth 20 17,149

Newport 17 26,475

Woonsocket 17 43,224

Middletown 15 17,334

Burrilville 14 15,796

Johnston 11 28,195

North Providence 11 32,411

Barrington 10 16,819

Chariho (District) 10 .

North Kingston 10 26,326

The high prevalence of autism in some smaller towns in Rhode Island may be due to migration for better services. Parents of affected children are known to sacrifice willingly in order to provide their children with the best available education. But the difference in prevalence is striking and is likely due to other factors, such as genetic predisposition, ethnic origin, prior environmental insults and immune susceptibility.

Though it is impossible to obtain specific prevalence data from the individual schools and districts because of confidentiality, such rates can be approximated. According to the 2000’ Census figures, children 5 to 19 years old were around 20% of the total and males accounted for 48% of the population. East Greenwich, Rhode Island with a population of 12,948 probably has 16 boys with autism (3 to 1 boys to girls). It is therefore possible that as many as 1 in 78 boys attending school in East Greenwich have autism. Similarly, the approximate prevalence of autism in boys age 5 to 19 is 1 in 109 in Portsmouth, 1 in 118 in Westerly and 1 in 127 in Lincoln schools. It will be vital that future research be focused on finding why such a huge difference in autism prevalence exists between a suburban upscale community such as East Greenwich with 1 in 78 boys/1 in 256 girls and the State Capital with 1 in 717 boys/1 in 2,329 girls.

Statewide, there are more children with autism in the lower grades. More disturbing yet, is the number of preschool children with the diagnosis.

According to the RI Department of Education, the number of students needing special education and services has been increasing at a much faster rate than expected with autism and BD, accounting for much of the increase.

School Year All Students Special Education

1995-1996 149,802 26,427

1996-1997 151,325 27,583

1997-1998 153,321 28,558

1998-1999 154,785 28,993

1999-2000 156,458 31,011

2000-2001 157,355 32,043

2001-2002 158,046 33,058*

% Increase 5.5% 25.1%

*Includes 44 children in Charter Schools and 224 children in 3 State Schools.

The ratio of children requiring special help varied in different communities.

Between school years 1990-91 and 1998-99, 21 of 36 school districts expanded enrollments in special education programs by 30% or more.

In 1996-1997, Rhode Island enrolled a greater percentage of children 3-21 in special programs, 10.8%, than any other state.

Obviously, children with disabilities require more services, time and effort. Special provisions must be made for safe transportation and expert nursing, in addition to the added specific educational needs. Children with autism stress the districts even more. They require a specialized staff for speech and language, occupational and physical therapy, behavior modification, diet intervention and adapted physical education. Formulated IEPs must be adhered to and supervisors must remain constantly involved in order to coordinate with the network of medical, psychological and educational outside consultants. Many professionals are thus involved in the education and care of ONE child with autism and even the higher functioning affected student will often need a “shadow” when mainstreamed.

The National Association of State Boards of Education (NASBE) compiles relevant data on education for each state. The following is a comparison of the contributions to school revenue, according to NASBE for the year 2000. California was included because of its well-known autism statistical studies.

Federal State Local

National Average

$18,581,511,000 6.80% $127,719,673,000 46.80% $119,538,243,000 43.8%

California

$3,443,221,000 8.60% $23,736,295,000 59.30% $12,379,999,000 30.90%

Rhode Island

$73,870,000 5.60% $548,776,000 41.60% $679,478,000 51.50%

The percentage of federal and state funding of school revenue in Rhode Island is below the national average and most educational dollars come from the communities. Why the Federal Government pays different percentages of the education cost in different states is hard to comprehend, as the federal mandates and expenses they generate are proportionately the same for all states. In addition, in Rhode Island, large cities often receive relatively higher state and federal contributions, while smaller communities must raise a bigger part of the school revenue, sometimes as much as 60% of the total, to meet the State mandates. The upward spiraling cost of education in general and of special education in particular is therefore quickly becoming everyone’s problem. As time goes by, it is likely that, because of budget deficits, even fewer funds for education will be coming from federal and state sources. The responsibility for providing adequate education will then become an increasing burden on individual communities.

Superior educational and therapeutic programs for autism MUST continue and even proliferate. Improvement is clearly evident when children attend schools with excellent services. If the presently used successful strategies are stopped, families and communities will have the burden to care for thousands of damaged adults for the rest of their lives, and the statement “You pay now or you pay later” could not be more appropriate.

Lastly, it is extremely important that the present accelerating increase in autism in Rhode Island be reversed. Autism destroys children and

families. At present, it is profoundly affecting many communities that

eventually will be unable to keep up with the increasing financial and social costs.

The Autism Epidemic is everyone’s problem and it is imperative that its causes be found and removed. Every possible environmental toxin should be evaluated and none should be deemed “untouchable”. Studies must involve parents and children, not just computers and databases. Undoubtedly some cases of autism are due to genetic causes and some others are due to environmental injuries in the first year of life, but in a third group of children, regression in the second year of life is unquestionable.

In the past, parents were told the child was born with the disease and symptoms just happened to be noticed in the second year of life. The concept of autistic regression has now been accepted and studies to investigate it are being encouraged by the National Institutes of Health. So far, the causes for its present accelerating rise are not known for sure. The scientists at the Center for Disease Control and Prevention (CDC) keep repeating that they know what does not cause autism but so far, have not come up with a single clinical study to find out what does, or a reasonable explanation for the increase. The CDC did a fine job controlling past epidemics in Rhode Island. Now is certainly the time for the “Control” and “Prevention” of autism.

The flood of new cases will not stop till the causes of autism are found. If that does not happen soon, more families will be ruined and taxpayers will be increasingly burdened. Sadly, more children in Rhode Island will grow to adulthood without ever knowing how beautiful “Little Rhody” is!

- F. Edward Yazbak, MD, FAAP TL Autism Research, Falmouth, Massachusetts.

Autism Resources

* Free Readers' Posts

* * *

UC Davis Scientists To Study Potential Causes Of Autism Researchers hope to understand possible roles of environment, genetics

UC Davis researchers have launched several major new studies to unlock the mysteries surrounding autism.

They hope to answer a fundamental question: Do environmental factors combine with genetics to cause the disorder?

The research, expected to break ground in an area where little is known, will take place over the next few years.

Next month, investigators from the UC Davis Center for Children's Environmental Health will begin enrolling 2,000 California children in the study.

They plan to include 700 autistic children, 700 who have mental retardation or developmental delay but not autism, and 600 who have developed normally.

Researchers will then analyze blood, urine and hair samples from the children and their family members to search for the presence of toxic substances.

They will compile comprehensive histories on the mother and child, looking at exposure to everything from vaccines containing a mercury preservative to pesticides, PCBs and chemicals used in industrial processes.

The work will be much like fitting together the pieces of a giant jigsaw puzzle without knowing what the final picture looks like. Investigators will search for patterns of differences between the children with developmental problems and those without.

"We're casting a really wide net and that's because we really don't know a lot about autism," said Irva Hertz-Picciotto, a UC Davis professor of epidemiology and preventive medicine who oversees one of the studies.

"This is really the first big, comprehensive effort to enroll a lot of children and look at a combination of environmental and genetic factors," she added. "It's likely that both play a role."

Autism, a severe developmental disorder that undermines a child's ability to connect with the world, has no known cause and no cure.

Autistic children often have difficulty making eye contact and carrying on a conversation. Many engage in ritualistic behavior such as hand-flapping and obsessively following routines.

The search for answers takes on added urgency because of a recent explosion in the numbers of autistic children in the United States, England, Scotland and elsewhere.

While some experts believe the increase is a result of better diagnosis, others note that a recent study by UC Davis researchers concluded that it appears to be a real phenomenon.

Scientists now believe as many as five to 15 genes play a role in causing autism, said Isaac Pessah, a UC Davis professor of pharmacology and toxicology who directs the center.

But Pessah and other experts wonder if an unknown environmental factor pushes genetically vulnerable children over the edge into autism.

"We know that genes by themselves don't cause epidemics," said Rick Rollens, the father of an autistic boy. "There must be something else going on."

A couple of years ago, Rollens joined other parents of autistic children in urging Kenneth Olden, director of the National Institute of Environmental Health Sciences, to establish several autism research centers around the country.

"Really for the first time, autism research has been expanded to include new disciplines and new ideas about possible causes of autism," Rollens said.

UC Davis officials succeeded in obtaining grant money to open the center in late 2001.

With an annual budget of $1.6 million, it receives funding from the National Institute of Environmental Health Sciences, the Environmental Protection Agency and UC Davis' Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute.

Investigators at the M.I.N.D. Institute, who do research on autism, collaborate closely with those at the center. Together, the two institutions place the Davis campus at the forefront of those seeking to unravel the disorder.

Hertz-Picciotto's study will focus on children between the ages of 2 and 5 living in Solano County, the Central Valley, Sacramento and Napa areas, and Los Angeles.

Researchers selected these areas to include children likely to be exposed to pesticides and other chemicals found in agricultural regions, as well as those from urban centers.

"We want a real dichotomy of environmental exposures," Pessah said.

The autistic children will be recruited from those who receive services through the state Department of Developmental Services regional centers.

The normally developing children will be selected at random from state birth certificate files.

Hertz-Picciotto hopes to have some preliminary results within two years. But the study has funding for five years and could last much longer.

After obtaining blood samples, researchers will analyze if the immune systems of autistic children function differently than those of other children. They will look at cell-to-cell communication and metabolism.

Other researchers at the center have begun to tackle one of the most controversial theories surrounding autism: Could it be triggered by thimerosal, a mercury-containing preservative in several vaccines until the U.S. Food and Drug Administration asked manufacturers to voluntarily phase it out in 1999?

Vaccine manufacturers insist thimerosal is safe. But it has spawned class-action lawsuits in California and at least 10 other states by scores of parents who blame the preservative for their child's slide into autism.

To find answers, center investigators have begun to ask if thimerosal influences social behavior in mice. The question is significant because social behavior is a key criteria for diagnosing autistic children.

Center researchers have injected mice with thimerosal at about the same rate that children received it as part of their routine vaccination schedule, with an adjustment to account for the smaller size of the mouse. Researchers then analyze if the behavior of the mice changes.

Most mice like to huddle with their mother and littermates after they're born and will emit ultrasonic cries of distress if separated from the group, Pessah said. Researchers hope to discover if mice who have received thimerosal no longer want to huddle with others, echoing the isolation exhibited by autistic children.

Center officials hope to release some findings on thimerosal early next year, Pessah said.

Parents around the world eagerly await answers on autism.

"We think it's not going to be one single factor that's going to turn out to explain it all," Hertz-Picciotto said. "It may be a combination of things. We're really at the very beginning of understanding this complicated disorder."

Autism Resource

* News Archive - Autism Database - Free Access

* * *

MEDIA ALERT

"The Point" Reruns on NPR Wednesday, Jan. 1, 1pm Eastern

On November 26, 2002, Ed Yazbak was a guest on "the Point" with Mindy Todd on Cape Cod NPR stations, WCAI 90.1 and WNAN 91.1 FM. Because of the importance of the topic, Ms. Todd has decided to rebroadcast the taped show on Wednesday January 1, 2003 at 1pm Eastern.

The subject of the interview was Autism and its recent epidemic increase. Rick Rollens, well-known autism advocate, called the program and reported on the research in progress in California. Ray Gallup, Founder of the Autism Autoimmunity Project, also called and discussed the research his group is supporting. The show received a lot of attention and was repeated the following Saturday as Best of Week.

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

LETTERS

Dan Burton Questioning a Mercury Link To Autism

To the editor of the The Indianapolis Star, December 30, 2002.

Your editorial of Dec. 11 accurately pointed out the growing dispute over whether there is a relationship between childhood vaccines and autism spectrum disorders.

What is not in dispute is that there has been a shocking surge in the number of autistic children in the last decade, and nobody knows why.

In 1990, Indiana schools had 116 requests for services for autistic children.

Last year, there were nearly 3,800.

A recent study in California showed that autism cases have tripled there.

One in 10,000 children used to be affected by autism; now the National Institutes of Health estimates that one in 250 is.

Nationwide, as many as 1.5 million Americans are believed to have some form of autism spectrum disorder.

We have an epidemic on our hands and must not stop looking at any possible causes, especially mercury, which is known to be a neurotoxic pollutant.

The comments of the epidemiologist who led the California study, Dr. Robert Byrd, are telling: "It is astounding to see a threefold increase in cases of autism with no explanation.

There's a number of things that need to be answered.

We need to rethink the possible causes of autism." Your editorial stated that the scientific evidence supports the safety of thimerosal, a mercury-based preservative that until recently was used in many childhood vaccines.

That statement isn't supported by the facts.

Last year, the respected Institute of Medicine conducted a thorough review of the research on thimerosal and neurological disorders.

The IOM determined that a connection was "biologically plausible" but that "the existing evidence is inadequate to accept or reject a causal relationship." The good news is that thimerosal has now been removed from most childhood vaccines.

The bad news is that the Food and Drug Administration waited so long to take action, resulting in exposure of millions of kids to unnecessary risk.

In fact, the tremendous increase in autism coincided with the introduction of two additional vaccines containing thimerosal to the U.S. Children's Immunization Schedule in the late 1980s and early 1990s.

For those who consider thimerosal safe, here are a couple of interesting facts.

The FDA considered this mercury compound so unsafe that it ordered it removed from over-the-counter topical ointments in 1985.

Several European countries considered thimerosal so unsafe that they removed it from their vaccines in the early 1990s.

And yet, the FDA waited until 1999 to begin removing thimerosal from children's vaccines.

A number of internal government documents uncovered by my committee shed some light on the concerns about thimerosal that have developed over the last 20 years.

In 1980, an FDA advisory panel determined that thimerosal in ointments may cause cell damage: "The panel concludes that thimerosal is not safe for OTC (over the counter) topical use because of its potential for cell damage if applied to broken skin and its allergy potential." In September 1998, almost a full year before the FDA did anything about mercury in vaccines, the FDA's Maternal Immunizations Working Group noted: "For investigational vaccines indicated for maternal immunization, the use of single-dose vials should be required to avoid the need of preservative in multi-dose vials.

Of concern here is the potential neurotoxic effect of mercury, especially when considering cumulative doses of this component early in infancy." In October 1998, the FDA official responsible for reviewing all scientific literature on the safety of thimerosal in vaccines observed: "I disagree with the conclusion regarding no basis for removal of thimerosal.

(T)here are factors/data that would argue for the removal of thimerosal, including data on methyl mercury exposure in infants and the knowledge that thimerosal is not an essential component to vaccines." In an internal briefing document from 2000, a government researcher states: "Preliminary screening for possible neurologic and renal conditions following exposures to vaccines containing thimerosal before three months of age showed a statistical association for the overall category of neurological developmental disorders and for two conditions within the category, speech delay and attention-deficit disorder." It is unquestioned that overexposure to mercury in the environment causes neurological problems in developing children.

Nobody knows if mercury used in vaccines has caused autism or related disorders.

Much more research needs to be done to resolve this question.

It is very possible that a combination of factors is at work.

Are some people genetically predisposed to vaccine injuries? Did mercury in vaccines combine with mercury in the environment to have a cumulative effect on some children? Is there a combination of environmental factors causing this epidemic of autism? For the sake of autistic children and the parents who are struggling to raise them, we need to make it a national priority to answer these questions.

Until we do, let's not rule anything out.

- Rep. Dan Burton

[Burton represents the 6th District of Indiana in the U.S. House of Representatives and chairs the Government Reform Committee.]

* *

The Myth of Myths

I was extremely distressed and insulted, to say the least, about the following quote from Eden President David Holmes in a recent Trenton Times article.

Mr. Holmes was quoted as saying, "There are a lot of myths out there about vaccines and autism." "They [parents] were focused on the MMR

(measles-mumps-rubella) vaccine as a cause, but scientific studies have shown there is no link. Now they're focused on the thimerosal, and so far the studies are showing there's not an autism link there either," Holmes said. "You can't help but feel for them. They're clutching for whatever they can."

Mr. Holmes is obviously more influenced by government and pharmaceutical company propaganda than actual research and has obviously not seen articles debunking some of the latest research on MMR and mercury. [Maybe he should subscribe to the Shafer Autism Report.]

The reason that Mr. Holmes quote is so disturbing to me is that he is seen as an autism expert, and in giving support to the dogmatic view that we "know it all" when it comes to vaccines and autism, he might influence additional funding for research in New Jersey or influence parents of autistic children not to seek help. As seen in the Star-Ledger article entitled, "New Jersey Takes Lead In Confronting Autism.

Researchers are challenging assumptions about the disorder," even conventional medical experts are coming around to question environmental insults in autism. There are still questions to be asked, research to be done. We certainly do not have the final word on this issue.

As a parent searching for whatever we can do to help resolve my 4-year old ASD son's medical and developmental issues, I beg withhold. Holmes, to withold these types of comments. The parents that I know who are pursuing biomedical intervention are the most educated, passionate group of people I have ever come in contact with. They are not pulling their theories out of mid-air, but out of science. I hope that the so-called "clutching" parents of children at your Institute who may have been damaged by vaccines have something to say to you about your discourteous comments as well.

-Marcy Kelly

* *

Drug and Tobacco Lawyer Bashing

I read Victor Schwartz, the Washington attorney with Shook, Hardy, and Bacon, comments ie. "Drug companies that make vaccines help protect America from terrorists," with interest and disgust. His law firm has a long standing history of representing tobacco companies in this country. For years, Mr. Schwartz' law firm stood behind the tobacco companies in their deceitful denials that tobacco was harmful. Obviously, Mr. Schwartz and Shook, Hardy, and Bacon, who also represents drug companies, is more interested in their bottom line then the truth, even if it means harming Americans.

-Blake Wendelburg

* * *

READERS' POSTS

Riverdale, NY - seeking part time or full time help with warm and delightful 3 yr diagnosed with PDD. Must know or be willing to learn play techniques to aid development. linda.kahan@verizon.net

******

Need info re residential placemnt for ASD/Tourette child, educ (LEA) v. AB 3632. Can ASD child be desig. SED on IEP by schl dist. Your experience? Have basic advocacy knowledge, need detailed info on this issue. marinkirks@attbi.com

******

Seeking Lodging In Florida: Special Education Advocate specializing in autistic spectrum disorders seeking individual with access to lodging within 30 minutes of Orlando, FL. Attending special education conference in March '03 and require lodging for two adults/one child for one week. Interested in exploring options for exchange of accommodations for consulting/advocacy services. baboo2191@yahoo.com.

******

Does anyone have any information on grants to start a therapeutic riding center? Please email me. newellsc@aol.com

******

Announcing "Friends & Fun" a rec program for HFA or Asperger's kids at the Y in Wayne, NJ. Sundays. For more information contact lshatz@optonline.net

******

******

>> FREE (Almost) READERS' POSTS <<

For Individuals, organizations, non-commercial and

commercial. Limit your posting to no more than 60

words please. There is no charge for this service,

but posters are obligated to thank all those who take

the time to answer your ads. This is a consideration

for others with autism after you and yours, who seek

assistance from appreciated readers. Send submissions to:

_________________________________________________________________

Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith

++ To Unsubscribe, Send an email to unsubscribe@doitnow.com ++