You may remember our exchange of email last March, when I wrote to air several concerns about the use of the phrase “autism epidemic” in a MIND Institute press release. I was grateful for your March 28, 2005 response, in which you stated, “We agree with you that the phrase “Autism Epidemic” is not appropriate for the MIND Institute to use. I will look into the origin of this and do my best to assure that it does not originate with our scientists or public affairs office.” (1)

I was therefore dismayed to learn that the following editorial, its provenance attributed to “Rick Rollens, MIND Institute,” was recently circulated in “News and Views,” published on the publicly-viewable Autism-Mercury newsgroup by the National Autism Association, an organization that promotes the hypothesis that autism is a consequence of vaccine injury. (2,3)

IN THE NEWS
Autism Rate in California Continues to Decline
An editorial by Rick Rollens, MIND Institute

According to information released today by the California Department of Developmental Services (DDS), the number of new cases of professionally diagnosed full syndrome autism (NOT including any other autism spectrum disorder) entering California’s developmental services system in 2005 was the smallest number of new cases since the year 2001.

The DDS year end report for 2005 documents that during 2005, California added 2,848 new cases of autism to it’s system. Not since 2001 (2725 new cases) has California added less new cases of full syndrome autism to it’s system. Every year since the all time record year of 2002 there has been a slow, steady decline in the number of new cases of autism entering California’s 37-year old developmental services system.

Between 1979-80 and the end of 2002, California’s developmental services system experienced unprecedented record increases in the number of new cases of autism every year over the previous year. The 1990s saw an explosion of new cases of professionally diagnosed full syndrome every single year culminating in the record year 2002 with 3,132 new cases.

Prior to the start of the modern day autism epidemic, autism accounted for less then 3% of all the new intakes coming into California’s system which also includes mental retardation, epilepsy, and cerebral palsy. Today, autism accounts for 60% of all new intakes, and is the number one disability entering California’s developmental services system. 18 years ago there were 2,773 persons with autism in the system, today there are 29,424.

Children under the age of 3 years old with full syndrome autism are NOT included in the DDS reports, but instead are enrolled in the Early Start Program.

Nearly two-thirds (2 out of 3 ) persons in the system with autism are between the ages of 3 and 13 years old, with nearly 8 out of 10 under the age of 17 years old.

(For those who continue to believe in the fantasy that we have NOT experienced an epidemic of autism, might I ask one simple question: If the incidence of autism hasn’t increased dramatically over the past 20 plus years, then where are all the adults with full syndrome autism?? Surely if there is no real increase then we should see roughly the same number of adults with autism as we do children. I am sure it is about as easy today, as it has been in the past, to somehow misplace or not recognize thousands of adults with full syndrome autism…about as easy as missing a train wreck.)

There are numerous problems with this statement:

1. There is no disclaimer indicating that the opinions expressed in the editorial do not represent the official position of the MIND Institute. The prominent reference to Mr. Rollens’ affiliation with MIND makes it appear that the opinions contained in the editorial bear the imprimatur of MIND researchers and administration.

2. It is insufficient to rely upon the California DDS figures for epidemiology. (4) At least one representative of the California DDS has explicitly stated that “The numbers cannot be used to report the incidence of autism.” (5) The DDS document, “Data Considerations and Limitations,” contains a number of caveats that are ignored by Mr. Rollens in his analysis, including, “Increases in the number of persons reported from one quarter to the next do not necessarily represent persons who are new to the DDS system,” and “Differences in the numbers from quarter to quarter reflect the net changes between individuals who are newly reported and individuals who dropped out.” (6) To my knowledge, Mr. Rollens has no academic training or professional expertise in epidemiology; rather, his expertise is in the realm of politics. If his statements were not authorized by MIND administration, it would appear that Mr. Rollens’ allusion to his association with MIND is an attempt to give an air of scientific credibility to a representation of DDS figures designed to further a personal legal and political agenda. This is precisely the sort of situation to which the introduction to “Data Considerations and Limitations” refers—“Although information published by DDS in the Quarterly Client Characteristics Report is often used by media and research entities to develop statistics and draw conclusions, some of these findings may misrepresent the quarterly figures.”

3. Even if one examines the California DDS figures for exploratory purposes, it is insufficient to interpret them without considering relevant political and administrative factors. These include the increasingly restrictive “substantial disability criteria” instituted by the California DDS in July of 2003, obviously designed to reduce the number of intakes into the system. (7) It is also insufficient to interpret such numbers without also taking into account diagnostic substitution, which results in reductions in other areas such as mental retardation—one category in which numbers are consistently falling as autism numbers increase. (8)

4. It is inappropriate for any representative of a scientific and humanitarian institution to use the phrase “autism epidemic.”

a. The phrase “autism epidemic,” implies contagion and contamination, and is unnecessarily sensationalistic and derogatory towards autistic people.

b. The phrase “autism epidemic” implies an attribution of a nefarious cause to the recently increased incidence of autism diagnoses that is not supported by the preponderance of scientific evidence.

c. The loose use of the term “epidemic” trivializes the significance of real epidemics of infectious disease.

d. Widespread dissemination of the phrase “autism epidemic” perpetuates and increases unwarranted parental fears of vaccination, and in so doing endangers children and adults alike by undermining state and federal public health initiatives intended to minimize the incidence of infectious disease. (9) These fears have been deliberately provoked by vaccine-injury litigants and their allies, including Rick Rollens, by means of an aggressive public relations campaign aimed at convincing the general public that most currently-diagnosed cases of autism are a direct consequence of vaccine injury. This campaign has been eagerly supported by individuals and organizations harboring a wholesale political and/or philosophical opposition to vaccination. (10)

e. The use of the phrase “autism epidemic” contributes to a climate of panic which does emotional harm to parents of newly-diagnosed autistic children, and puts autistic children at risk by bolstering the efforts of those who unethically market various products and procedures as “autism cures” without the benefit of rigorous clinical trials and other scientific data to support their claims.

5. It is inappropriate for any representative of a scientific and humanitarian institution to personally denigrate individuals who, after conscientious review of available data, civilly dispute the assertion that there is an “autism epidemic,” by referring to them as “those who continue to believe in the fantasy that we have NOT experienced an epidemic of autism.” These supposed “fantasists” include a featured speaker in MIND’s Distinguished Lecture Series, Dr. Eric Fombonne. Many other reputable researchers have concluded that expanded diagnostic criteria, heightened clinician and parent awareness of autism, and increased availability of special education services, have all contributed significantly to recent increases in autism spectrum diagnoses. (11-19) These researchers’ conclusions may be arguable, but this hardly implies that they themselves are delusional.

6. It is inappropriate for any representative of a scientific and humanitarian institution to baldly assert that adults on the autistic spectrum do not exist in any significant numbers, or to assert that the incidence of autistic spectrum conditions in adults is less than the 1:166 incidence now documented in the child population, in the absence of any conscientious effort to investigate the matter. It is insufficient to assert that autistic spectrum adults do not exist in any significant numbers simply because MIND researchers, administrators and board members have daily contact with so few of them. It would make as much sense to uncritically believe such an assertion as it would to believe an Idaho resident’s denial of the existence of African-Americans simply because so few live in that state. MIND’s clientele is largely composed of parents seeking diagnoses and services for young children, and MIND focuses most of its resources on this population, with few resources devoted to studying or providing outreach and services to autistic adolescents or adults. (20) I have found no evidence that the MIND Institute has ever made or plans to make any effort to determine the extent to which the “mentally ill” homeless population in California is actually composed of individuals more properly classified as autistic, or to conduct a survey of self-reports of adults to determine what proportion might qualify for a PDD diagnosis or exhibit subthreshold symptomatology. Potential study populations could include Sacramento-area residents, University of California faculty, or immediate and extended family members of children brought to the MIND Institute for evaluation.

7. It is inappropriate for any representative of a scientific and humanitarian institution to personally denigrate autistic adults by likening their existence to a “train wreck.” Even the most severely impaired individuals deserve better than to be described in such a manner, especially in a communication bearing the stamp of a public institution funded by taxpayers and the National Institutes of Health. Further, the assumption that autistic spectrum adults will necessarily display the same level of impairment in adulthood as severely-impaired children is incorrect. Numerous studies have documented the fact that autistic individuals vary greatly in their presentation, and that adaptive functioning often improves and severity of impairment often declines over the lifespan. (21-26) It is incorrect to assume that all adults who might have qualified for an autism diagnosis in childhood would now qualify for services from the California DDS, which limits its services to those most in need of daily life support.

The use of the phrase “autism epidemic” and denials of the existence of adults on the autistic spectrum both occur within a political context that cannot fairly be ignored. In early 2001, trial lawyers began soliciting vaccine-injury clients among parents of autistic children, with dramatic assertions such as, “studies have confirmed that autism is often caused by these vaccines and in particular the ethyl-mercury preservative Thimerosal,” and “the link between autism and mercury poisoning is now conclusive.” (27) Numerous websites expanding upon these assertions were established by law firms, and litigants and their allies formed several political action organizations. About 100 cases were filed during 2001, and another 300 in the first six months of 2002. (28) Petition filings then skyrocketed, with 3,500 petitions pending by the end of 2003; 4,500 by December 2004; and more than 5,000 by December 2005. (29) Pending autism-related litigation includes a number of class-action lawsuits. (30)

The Special Master has stated at numerous points during the Omnibus Autism Proceeding that “if an individual petitioner has proof of causation in his own case that he wishes to put before a special master at any time, that petitioner will be afforded a prompt hearing.” No current petitioners appear to be choosing that route, however. My familiarity with online discussions of the autism-vaccine controversy leaves me convinced that the ranks of petitioners are filled with parents who possess little “proof of causation in their own cases,” but who have been persuaded by the ongoing media blitz to believe that vaccine injury is the only reasonable explanation for their children’s autism, and who have filed claims, hoping that their lawyers and their expert witnesses will be able to successfully argue the general causation issue, and thereby facilitate compensation.

An integral part of the plaintiffs’ litigative strategy is to persuade the court that there has been an increase in the actual incidence of autism over the past ten years that is solely attributable to vaccine damage—that is, to persuade the court that there has been an iatrogenic “epidemic” of autism. Plaintiffs therefore vehemently deny the existence of any significant number of adults whose early developmental pattern resembled that of children currently diagnosed with autistic spectrum conditions, for without that denial there can be no “epidemic.” Plaintiffs also seek to establish that there is “a slow, steady decline in the number of new cases of autism” that coincides with the removal of thimerosal from vaccines routinely administered to children.

All of these assertions are highly arguable, to say the least. What is not so arguable is the fact Rick Rollens’ public statements—which often include prominent references to his affiliation with the MIND Institute—are clearly intended to increase popular support for vaccine injury litigants’ arguments.

Is it the purpose of the publicly-funded MIND Institute to increase scientific understanding of autistic spectrum conditions, and to promote the welfare of all autistic individuals and of their families? Or is it MIND’s purpose to assist a specific constituency of litigants and allies determined to prevail in pending legal proceedings, who seek to affix liability for their children’s autism to pharmaceutical companies, medical professionals and public health agencies, and to obtain financial compensation from those sources?

Is it a goal of the publicly-funded MIND Institute to affirm the worth of all autistic individuals, regardless of age or level of functioning? Or do MIND researchers and administrators condone the denigration of autistic adults with histrionic comparisons to “train wrecks” and other catastrophes, in order to attract sympathy for plaintiffs in private litigation, or to garner public attention and political support for MIND’s predominantly child-focused research program?

These are not rhetorical questions. I am a mother, family member, friend and ally of individuals clinically diagnosed with autistic spectrum conditions. I am deeply committed to advocating for the welfare of those on the autistic spectrum over the entire lifespan, as well as for the welfare of their families. I am daughter to a polio survivor, intimately familiar with the long-term impact of this vaccine-preventable infectious disease, and I am deeply concerned by the extent to which confidence in the safety of routine childhood immunization has eroded over recent years.

I urge you now, as I did last year, to take an active stance against the dissemination of inaccurate and misleading information about autism, whether it originates with Rick Rollens speaking in his capacity as a Founding Father and Board member of the UC Davis MIND Institute, or anyone else. I urge you to unequivocally condemn the use of the sensationalistic term “epidemic” in relation to autism, and any other terminology that evokes horror and disdain of autistic individuals. I urge you to be vocal in your support of public health efforts aimed at reducing the incidence of infectious disease. And I urge you to consider and publicly acknowledge not only the needs of autistic children and their families, but also the needs of adults on the autistic spectrum, so that all may enjoy an enhanced quality of life.

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring
http://www.neurodiversity.com

Notes:

01. Our exchange of email last year: The Autism Epidemic and Real Epidemics.

02. See National Autism Association “Library” and “Grassroots Center Archives”, both focused overwhelmingly on vaccine injury as a suspected cause of autism.

03. NAA News & Views on Autism-Mercury Newsgroup.

04. Fombonne, E. (2005), Autism: Have Child Immunizations Created an Epidemic? Lecture, UC Davis MIND Institute, 14 December 2005. For discussion of the similar use of IDEA data, see Laidler, J. (2005). US Department of Education data on “autism” are not reliable for tracking autism prevalence. Pediatrics, 116 (1):120-124.

05. C.H., Staff Information Systems Analyst, California Department of Developmental Services.

06. Department of Disability Services (2005). Data Interpretation Considerations and Limitations.

07. Rollens, R. (2004), California Autism Intakes Down Slightly—Factors Discussed. Schafer Autism Report, 20 October 2004.

08. “Newly reported may include… individuals who had changes made to their CDER in the current quarter that resulted in them being reported under new categories,” in Department of Disability Services (2005). Data Interpretation Considerations and Limitations.

09. Boodman, S., Feuding Over Vaccines. Washington Post, 8 November 2005.

10. These include the International Medical Veritas Association, publisher of Medical Veritas, a journal consisting mostly of criticism of vaccinations and public health endeavors. See also http://www.vaccinetruth.org/.

11. Baker, D.L. (2004). Public Policy and the Shaping of Disability: Incidence Growth in Educational Autism. Education Policy Analysis Archives, 12:11.

12. Barbaresi, W.J. et al (2005), The incidence of autism in Olmsted County, Minnesota, 1976-1997: results from a population-based study. Archives of Pediatric and Adolescent Medicine, January 159(1):37-44.

13. Croen, L.A. et al (2002), The Changing Prevalence of Autism in California. Journal of Autism and Developmental Disorders, 32(3):207-15.

14. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: an update. Journal of Autism and Developmental Disorders, 33(4):365-382.

15. Fombonne, E. (2001). Is there an epidemic of autism? Pediatrics, 107(2):411-412.

16. Gernsbacher, M.A. et al (2005). Three reasons not to believe in an autism epidemic. Current directions in psychological science, 14(2): 55-58.

17. Heussler, H. et al (2001). Prevalence of autism in early 1970’s may have been underestimated. British Medical Journal, 323:633.

18. Jick, H. et al (2004). Epidemiology and possible causes of autism. Pharmacotherapy. 2004;24(4).

19. Palmer, R.F. (2005). School district resources and identification of children with autistic disorder. American Journal of Public Health 95:1(125-130), January 2005.

20. The MIND Institute’s website opens with a reference to, “neurodevelopmental disorders that affect children and families,” with no mention of autism in adults. MIND’s “Clinical Research Studies” page states, “Children and their families are encouraged to participate in MIND Institute’s Clinical Research studies. Multiple clinical research studies are currently seeking children from birth through adolescence with neurodevelopmental disorders… There are limited studies seeking adult subject participation.” MIND’s “Clinical Assessments for Neurodevelopmental Disorders” page welcomes “Families interested in having their children seen in our clinic…” but makes no reference to availability of assessment services for adults. “Frequently Asked Questions” states outright that, “the clinic… must limit its patient base to individuals who are the research focus of UC Davis MIND Institute… we see very few adolescents or adults.”

21. Fecteau, S. et al (2003). Developmental changes of autistic symptoms. Autism, 7(3): 255-268.

22. Ritvo, E. (1994). Clinical characteristics of mild autism in adults. Comprehensive Psychiatry 35(2):149-56.

23. Wehmeyer, M.L. et al (2003) Adult outcomes for students with cognitive disabilities three years after high school: The impact of self-determination. Education and Training in Developmental Disabilities 38(2):131-144.

24. Seltzer, M. et al (2003). Symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders 33(6):565-81.

25. Seltzer, M. et al (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Review 10(4):234-47.

26. Szatmari, P. et al (1989). Follow-up study of high-functioning autistic children. Journal of Autism and Developmental Disorders 19(2):213-25.

27. See http://onibasu.com/archives/am/20420.html, http://onibasu.com/archives/am/20625.html, http://onibasu.com/archives/am/33574.html, http://onibasu.com/archives/am/33645.html, http://onibasu.com/archives/am/30389.html, http://onibasu.com/archives/am/31313.html, http://onibasu.com/archives/am/38651.html, and http://onibasu.com/archives/am/39808.html for a few examples.

28. Golkiewicz, G. (2002), Autism General Order #1. United States Court of Federal Claims, Office of Special Masters, July 3, 2002.

29. All orders and updates of the Omnibus Autism Proceeding are available at http://www.uscfc.uscourts.gov/OSM/AutismDocket.htm. Summary of petitions filed:
01/01/02 100
07/03/02 400
11/07/03 3,350
12/23/04 4,500
12/22/05 5,000

30. See here for a pleading in one such case, a California class-action with request for jury trial.

Recipients:

Robert Hendren, D.O., Executive Director, MIND Institute
David G. Amaral, Ph.D., Director of Research, MIND Institute
John Brown, Ph.D., Psychologist, Department of Psychiatry and Behavioral Health
Eric Fombonne, M.D., Professor of Psychiatry, McGill University
Randi Hagerman, M.D., Medical Director, MIND Institute
Robert E. Hales, M.D., M.B.A, Chair, Department of Psychiatry, UC Davis Health System
Robin L. Hansen, M.D., Director of Clinical Programs, MIND Institute
Irva Hertz-Picciotto, Ph.D., M.P.H., Professor, Department of Health Sciences
Sally Ozonoff, Ph.D., Associate Professor, Department of Psychiatry and Behavioral Sciences, School of Medicine
Isaac Pessah, Ph.D., Director, UC Davis Children’s Center for Environmental Health and Disease Prevention
Anthony Philipps, Chair, Department of Pediatrics, UC Davis Health System
Claire Pomeroy, M.D., Vice Chancellor for Human Health Sciences, UC Davis; Executive Associate Dean, School of Medicine
Sally Rogers, Ph.D., Professor, Department of Psychiatry and Behavioral Sciences, School of Medicine
Barry Tharp, M.D., Clinic Director, MIND Institute

Comments

Thank you, Kathleen, from my very Silk Brocade Converse wearing soles. I look forward to your reporting responses from all of them. — Camille Feb 1, 09:26 PM #
Brava, Kathleen, BRAVA !! — hollywoodjaded Feb 3, 12:40 AM #
(Grins)You nailed this on the head.
Thank you for the effort on this. — Jonathan Semetko Feb 3, 10:00 AM #
It should be noted that the ‘new cases’ wording often used by the curebies is totally misleading. It refers to the change in the total caseload handled by the state of California. The increase in caseload is still much higher than population growth. It should be expected that the so-called ‘new cases’ should decrease gradually until the increase in caseload matches population growth – although with a social construct such as autism you never know where the boundary between disorder and natural variation is drawn. — Jose Feb 7, 11:32 AM #
“I am sure it is about as easy today, as it has been in the past, to somehow misplace or not recognize thousands of adults with full syndrome autism…about as easy as missing a train wreck.�?

What is full syndrome autism? When I think of the autistics I’ve met in person, there is no classic, “full syndrome�? type I can think of. They are all so varied.
Another thing is that autistics need not be undiagnosed to not be listed as autistic – it used to be that there were piles of kids diagnosed with childhood schizophrenia – now it estimated 1 out of 10,000. Where did they go? — Ettina Feb 7, 01:01 PM #
Ettina, the first time I heard the term “full syndrome autism�? was when I found myself at a program put on by my local Regional Center entitled something like “ASD Best Practices.�? The speaker was none other than Rick Rollens, who carefully explained to us that only kids who have “professionally diagnosed full syndrome autism�? are disabled—we are not talking about Asperger’s or PDD-NOS. I am sure there is no DSM diagnosis of “full syndrome autism�? or “partial syndrome autism.�? There is autistic disorder as well as the other pervasive developmental disorders, each of which is a full syndrome in itself.

I have always been confused about (1) what professionally-diagnosed full-syndrome autism means, and (2) why the Regional Center would put on a program about Autistic Spectrum Disorder that excluded everyone on the spectrum except those with “full syndrome autism.�?

Sorry, I know that didn’t help. — Anne Feb 7, 06:15 PM #
Anne wondered why the Regional Center would put on a program about Autistic Spectrum Disorder that excluded everyone on the spectrum except those with “full syndrome autism.�?

From my involvement with the Regional Center system, that seems to just be what the Regional Center do, and have been doing for years. They may pay lip service to the existence of what they call a “spectrum�? but rarely act like it. Especially since their main but unofficial role is to deny funding wherever possible. — Amanda Feb 8, 10:57 PM #
Those blaming thimerasol for increasing autism diagnoses predicted the decline in new case reports. So the apparent dip in 2005 was held as evidence.

Well, a year has passed since you posted this, and here’s the latest headline (via the Schafer Autism Report):

California Reports: Autism Epidemic Rages On – 2006 Record Year

Hmm. Perhaps they’ll now join you in dismissing the DDS numbers.
— John F. Feb 1, 10:15 PM #

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