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Conflicting Reports On Autism Data

By: Dr. F. Edward Yazbak

Should the United States Department of Education (U.S. DOE) data on autism be used and trusted? The answer may depend on whether you read the March or July issue of PEDIATRICS, the Journal of the American Academy of Pediatrics.

In its March 2005 issue, the journal published an excellent report by researchers and epidemiologists from the Center for Autism and Developmental Disabilities Epidemiology at the Johns Hopkins Bloomberg School of Public Health and the Divisions of Epidemiology and Clinical Research at the University of Minnesota. Extrapolating from U.S. DOE special education data, the investigators found that autism prevalence hasbeen increasing with time, although recent years may mark a slowing in that increase.

In the July 2005 issue, PEDIATRICS published an article by James R. Laidler, MD, of the Department of Biology at Portland State University, in which he asserted that the data from the U.S. DOE were not reliable and could not be used to track autism prevalence in the United States

Before I get into the details of these papers and my critique of them, let me briefly provide some background on the subject.

"Autism 1999: A National Emergency" was my first attempt at showing that autism rates were increasing in the United States. (1) My research was based on statistics provided by the OSEP, the Office of Special Education Programs of the U.S. Department of Education, and on other information directly obtained from several states. To the best of my knowledge, my report was also the first written by anyone outside the government using OSEP information.

The Individuals with Disabilities Education Act (IDEA) was enacted in 1975 to ensure equal educational opportunities for children with disabilities. State and local education districts were mandated to provide a "free appropriate public education," based upon an "individualized education program" (IEP) geared to each student’s needs. The DOE was in turn mandated to report yearly to the United States Congress. As cases of autism and autistic spectral disorders increased in U.S. schools, a decision was made to list them as a separate entity (Autism) starting in 1991.

A very important report from California, published earlier than mine, described in great detail the increase in autism in that state over the previous 13 years. (2)

In February 1998, Andrew Wakefield, MD, published a study in which he described specific changes in the intestines of a few children whose parents had reported a temporal association between their Measles, Mumps and Rubella (MMR) vaccination and their autistic regression. (3)

In the United States, there was also a large and vocal parent-directed movement questioning a mercury-autism connection and alarmed about the clear increase in autistic disorders since the introduction of HIB and Hepatitis-B vaccines into the recommended pediatric schedule.

In a press release dated July 14, 1999, the American Academy of Pediatrics (AAP), addressing the FDA Review of Vaccines stated, "Because any potential risk is of concern, the AAP and the Public Health Service agree that the use of thimerosal-containing vaccines should be reduced or eliminated." (4)

In order to deny a vaccine-autism connection and safeguard the established vaccination programs, the common front among the autism "experts" was:

  • That the prevalence of autism and autistic spectral disorders was low
  • That there was no increase in these disorders to speak of
  • And that if there had been an increase, it was limited and due to better diagnosis 

Since 1999, most of the information and data on the clear increase in autism that I included in my publications were obtained from the Department of Educationannual reports to Congress. My December 2003 review "Autism in the United States: A Perspective" (5) in the Journal of American Physicians and Surgeons, was also based on and included such data. 

I relied on the IDEA data of the DOE because it was readily available. I considered such data reliable because I sincerely believed that:

  1. No reasonable parent is willing to label his child as having autism if he or she was not affected
  2. No special education director would provide expensive services to any child if there were any question about the diagnosis.

In fact, I am certain that because of these two reasons, there may be many children in U.S. schools with milder spectral disorders who are listed simply as having behavior, social or speech difficulties.

According to OSEP (5), the number of children, age 6 to 21, with autism and autistic spectral disorders in U.S. schools increased yearly (Table I) since the introduction of the new and standardized criteria of DSM-IV. The Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition, published by the American Psychiatric Association in 1994, is the main diagnostic reference of mental health professionals in the United States.

School Year
Students
Percent Increase
1994-95
22,780
 
1995-96
28,813
26.48
1996-97
34.082
18.28
1997-98
42,487
24.66
1998-99
53,561
26.06
1999-00
65,391
20.86
2000-01
78,717
20.37
2001-02
97,847
20.61
2002-03
118,603
21.21
2003-04
140,922
18.81

Table I
Children, age 6 to 21 with autism in U.S. schools
Source: OSEP

The orchestrated denial that autism was "really increasing" went on until January 2004, when suddenly the U.S. Department of Health and Human Services, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics conceded that 1 in 166 children in the United States had been diagnosed with autism and ASD. (6)

Meanwhile, a multitude of epidemiological studies were feverishly initiated and/or commissioned in order to prove that vaccines did not cause autistic regression and did not contribute to the present autism epidemic. The most important of these studies have been shown to be flawed.  

Now to the two recent publications in PEDIATRICS.

The first, National Autism Prevalence Trends from United States Special Education Data, by Craig J. Newschaffer, Ph.D., Matthew D. Falb, MHS and James G. Gurney, Ph.D., appeared inVol. 115 No. 3 March 2005, pp. e277-e282 (doi:10.1542/peds.2004-1958) It was accepted for publication on Oct. 22, 2004.

Objective: Reports of large increases in autism prevalence havebeen a matter of great concern to clinicians, educators andparents. This analysis uses a national data source to comparethe prevalence of autism with that of other disabilities amongsuccessive birth cohorts of U.S. school-aged children.

Design: Comparison of birth cohort curves constructed from administrativedata.

Setting and Population: U.S. children 6 to 17 years of age between1992 and 2001.

Main Outcome Measures: A disability category classificationof autism, mental retardation, speech and language impairment,traumatic brain injury, or other health impairment, as documentedby state departments of education and reported to the Officeof Special Education Programs, U.S. Department of Education.

Results:  Prevalences of disability category classificationsfor annual birth cohorts from 1975 to 1995 were calculated byusing denominators from U.S. Census Bureau estimates. For theautism classification, there were birth cohort differences,with prevalences increasing among successive (younger) cohorts.The increases were greatest for annual cohorts born from 1987to 1992. For cohorts born after 1992, the prevalence increasedwith each successive year but the increases did not appear tobe as great, although there were fewer data points availablewithin cohorts. No concomitant decreases in categories of mentalretardation or speech/language impairment were seen. Curvesfor other health impairments, the category including childrenwith attention-deficit/hyperactivity disorder, also showed strongcohort differences.

Conclusions: Cohort curves suggest that autism prevalence hasbeen increasing with time, as evidenced by higher prevalencesamong younger birth cohorts. The narrowing in vertical separationof the cohort curves in recent years may mark a slowing in theautism prevalence increase.

It is evident that the distinguished authors felt that:

  1. The "National Autism Prevalence Trends" could be extrapolated from the U.S. Department of Educationspecial education data
  2. The prevalence of autism had increased
  3. The higher prevalence among younger students was of concern

The second article by Laidler was just published:PEDIATRICS Vol. 116 No. 1 July 2005, pp. e120-e124 (doi:10.1542/peds.2004-2341) U.S. Department of Education Data on "Autism" Are Not Reliable for Tracking. (Accepted for publication on Jan. 13, 2004)

Many autism advocacy groups use the data collected by the U.S.Department of Education (U.S.DE) to show a rapidly increasingprevalence of autism. Closer examination of these data to followeach birth-year cohort reveals anomalies within the U.S.DE dataon autism. The U.S.DE data show not only a rise in overall autismprevalence with time but also a significant and nearly linearrise in autism prevalence within a birth-year cohort as it ages,with significant numbers of new cases as late as 17 years ofage. In addition, an unexpected reduction in the rise of autismprevalence occurs in most cohorts at 12 years of age, the agewhen most children would be entering middle school. These anomaliespoint to internal problems in the U.S.DE data that make them unsuitablefor tracking autism prevalence.

In asserting that the data from the U.S. DOE were not reliable and could not be used to track the increase in autism prevalence in the United States, Dr. Laidler did not discuss the 1 in 166 figure, which was not based on OSEP statistics.

I do not know if Dr. Newschaffer and his associates will be commenting on the Laidler publication or whether they even need to.

What I do know is:

  • The editorial board of PEDIATRICS, though aware of the Laidler study for months, still published the report by the Johns Hopkins and University of  Minnesota researchers
  • The information about the increasing numbers of children with autism/ASD in school will again be sent, as ordered, from the local boards to the state DOE and from there to the U.S. Department of Education
  • The Annual Report to Congress will be published, as usual, in October.

The preliminary results of a recent survey of several states by Raymond Gallup, Founder of the Autism Autoimmunity Project, are presented in tables II and III. It is unlikely that these numbers will change significantly. It appears that in every state surveyed, and for each of the two age groups listed, there were more children with autism and ASD, attending school in 2004-2005 than during the school year 2003-2004. (7)

The increase in the 3- to 5-year-old age group is of particular concern. In some states, the rate of increase seems indeed to be slowing down as noted in the Johns Hopkins study. In others, the recent figures are extremely alarming, regardless of their causes.

State
2003-2004
2004-2005
Percent Increase
Alabama
1,319
1,582
19.9
Arizona
2,131
2,617
22.8
Arkansas
1,040
1,192
14.6
California
19,034
22,691
19.2
Colorado
    879
 1,072
22.0
Connecticut
2,041
2,377
16.5
Delaware
   387
   439
13.4
Florida
5,915
7,256
22.7
Georgia
3,956
4,667
18.0
Hawaii
   618
   711
15.0
Idaho
   571
   686
20.1
Indiana
4,755
5,558
16.9
Kansas
   993
 1,231
24.0
Kentucky
1,358
1,551
14.2
Louisiana
1,640
1,871
14.1
Maine
   815
   985
20.9
Maryland
3,536
4,077
12.4
Massachusetts
4,007
4,367
  9.0
Michigan
6,341
7,318
15.4
Minnesota
5,076
5,457
  9.0
Mississippi
   622
   767
23.3
Missouri
2,664
3,138
17.8
Montana
    247
    257
  4.0
Nebraska
    557
    694
24.6
New Hampshire
    585
    929
58.8
New Jersey
4,933
5,738
16.3
New Mexico
   359
    416
15.9
North Carolina
4,074
4,763
16.9
North Dakota
   220
    246
11.8
Ohio
5,146
6,308
22.6 
Oklahoma
    959
1,308
36.4
Oregon
3,759
4,341
15.5
Pennsylvania
5,805
7,034
21.2
South Dakota
   328
   379
15.5
Tennessee
1,659
2,034
22.6
Texas
10,354
12,412
19.9
Utah
1,030
1,279
24.2
Virginia
3,533
4,271
20.9
Washington
2,824
3,414
20.9
West Virginia
   507
   588
16.0
Wisconsin
3,259
3,876
18.9

Table II
Children with Autism and Autistic Disorders Age 6-21
State DOE figures as of June 30, 2005

 

State
2003-2004
2004-2005
Percent Increase
Alabama
  160
   174
  8.8
Arizona
   157
   223
42.0
Arkansas
     74
   102
37.8
California
5,829
6,598
13.2
Colorado
     99
   121
22.2
Connecticut
   316
   368
16.5
Delaware
      88
     92
  4.5
Florida
1,236 
1,415  
14.5
Georgia
   427
   504
18.0 
Hawaii
    152
   157
  3.3
Idaho
      64
     69
   7.8
Indiana
    679
   699
   2.9
Kansas
    137
   153
11.6
Kentucky
    228
   232
  1.8
Louisiana
   284
   332
16.9
Maine
   203
   270
33.0
Maryland
   548
   583
  6.4
Massachusetts
1,080
1,100
  1.9
Michigan
   918
1,031
12.3
Minnesota
   762
   782
  2.6
Missouri
   199
   255
28.1
Montana
     23
     31
47.6
New Hampshire
     82
   120
46.3
New Jersey
   570
   650
14.0
New Mexico
     54
      73
35.2
North Carolina
   613
   644
  5.1
North Dakota
      20
      32
60.0
Ohio
   344
    366
  6.4
Oklahoma
      32
       34
  6.3
Oregon
   630
    686
  8.9
Pennsylvania
1,373
1,582
15.2
Tennessee
   299
   356
19.1
Texas
1,586
1,824
15.0
Utah
   149
   205
37.6
Virginia
   418
   470
12.4
Washington
   288
   333
15.6
West Virginia
      27
      33
22.2
Wisconsin
   410
   485
18.3

Table III
Children with Autism and Autistic Disorders Age 3-5
State DOE figures as of June 30, 2005

To put the above increases in the 3- to 5-year-old group in perspective, the available OSEP figures are listed in Table IV.

School Year Students Percent Increase
2000-2001 15,581  
2001-2002 17,032 9.3
2002-2003 19,017 11.6
2003-2004         22,724 19.5

Table IV
Children, age 3 to 5, with autism in U.S. schools
Source: OSEP

Any increase in autism and autistic disorders is regrettable. Increases of more than 20  percent in the school year 2004-05 among 3- to 5-year-old children are alarming.

The CDC has denied for years that MMR vaccination can precipitate autistic regression in a small group of genetically predisposed children. The CDC has also denied that thimerosal, a mercury preservative in vaccines is dangerous or that it could be the cause of the present increases in autism and other developmental/behavioral disorders.

This stonewalling reached a new dimension when on a very short notice Julie L. Gerberding, MD, MPH, Director of the Centers for Disease Control and Prevention, andrepresentatives from other agencies held a press conference on July 19 at 2 p.m. at the U.S. Department of Health and Human Services. Parents groups were neither informed nor invited. Apparently the press conference was called in order to communicate the importance of pediatric vaccinations and reassure parents about the safety of vaccines.  "The renewed attention to the potential causal link between thimerosal, a vaccine preservative, and autism will also be addressed during the press conference," the notice said.

Actually, there was no "renewed" attention to thimerosal. SafeMinds parents have never relented in their efforts to attract attention to the problem since they first revealed it in the 1990s. The movement simply became more vocal after the publication of Evidence of Harm by David Kirby and the involvement of Radio Host Don Imus and Attorney Robert F. Kennedy Jr. in the issue. "Giving Mercury to Children on Purpose is Stupid,"a national publicity campaign byUnlocking Autism and the National Vaccine Information Center, accompanied by a writing campaign to the White House and Congress was also an admirable and valiant effort to increase national awareness.

It is likely that this week's CDC press conference was intended to pre-empt the Power of Truth Rally that was to be held in Washington D.C. on July 20.

Conclusions:

The increase in autism and autistic disorders, particularly their regressive form, is true, tragic and ongoing in the United States.

The U.S. Department of Education annual reports to Congress may not be perfect, but they are the only reliable source for standardized information on the prevalence of autism.

If the CDC "experts" deny that MMR vaccination and thimerosal are involved, then they must tell the American people why there were 6,598 autistic children aged 3 to 5 in California schools in 2004-05.

References:

  1. Yazbak F.E., Autism 1999 A National Emergency
  2. Changes in the population of persons with Autism and Pervasive Developmental Disorders in California's Developmental Services system: 1987 through 1998. A report to the legislature. http://www.dds.ca.gov/autism/pdf/1exec_summ.pdf
  3. Wakefield A.J., Murch S.H., Anthony A., et al. Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet 1998;351: 637-41.
  4. http://www.aap.org/advocacy/archives/julvacc.htm
  5. Yazbak F.E.. Autism in the United States: A Perspective J .Am Phys Surg  2003; 8(4) 103-108 http://www.jpands.org/vol8no4/yazbak.pdf
  6. pdf file
  7. link