Autism 99: A National Emergency

"The attached study is my independent research.
All conclusions reflect my views and not those of any of the organizations to which I belong."
F. Edward Yazbak, MD, FAAP.

The just released Report on Autism to the California Legislature, shows a massive and persistent rise in the incidence of this disease.

"In the past 10 years, California has had a 273% increase in the number of children with autism who enter the developmental services system---1,685 new cases last year alone" said State Senate President pro Tem John Burton in a press conference, following the release of the report. This spectacular increase reported was evident in all regional centers from San Diego to Eureka.

In Section E of the executive summary ( page ii ), the authors point out that the data in the report do not include persons in California who are not part of the Development Services system, and formulate the following ( quoted ) two conclusions :

A. The number of persons entering the system with autism has increased dramatically over the past 11 years relative to the other developmental disabilities.

B. The accelerated rate appears to be sustaining an upward trend into future years.( 1 )

The California Education Department figures also show a similar, almost four fold increase in autistic syndromes, from 2,157 cases in April 1993 to 8.084 cases in April, 1998. In the school year 1997-1998 there were 5,727,3053 students in the school system, and 632,238 in special education classes.( 2 )

As the clinical syndrome of autism has changed in the last few years, the diagnostic criteria had to be changed. Some of these changes may have been reflected in the high figures reported originally, but it is the sustained increase of this entity, year after year, that impressed us most, and prompted us to try to find out whether a similar picture was reported by other states.

When we looked at the New Jersey school figures ( 3 ), which follow, we realized that the east coast was just as affected, and that the tragedy was not limited to Brick Township, which attracted national attention, when the presence of 40 cases of autism among the township's 6,000 children was revealed.

Year Student Body age 3 to 21 Students in Special Ed. Autistic Children % of all students % of  students in Special Ed. 
1991 1,915,403 178,315 241 0.01 0.1
1992 1,914,046 182,003 523 0.03 0.3
1993 1,938,259 185,668 702 0.04 0.4
1994 1,990,259 189,522 876 0.04 0.4
1995 2,047,356 194,978 1042 0.05 0.5
1996 2,076,226 200,447 1274 0.06 0.6
1997 2,082,706 204,057 1634 0.08 0.8

We then proceeded to look at the Illinois figures, to see whether the center of the nation was similarly affected, and noted the same unrelenting increase in seven years. ( 4 )

Year   

Students with Learning Disabilities

Autistic   

 Percent

1991   

111,326

317

0.28

1992   

113,465

575

0.50

1993   

115,140

755

0.65

1994   

116,202

800

0.68

1995   

118,121

1,363

1.15

1996   

121,672

1,754

1.44

1997   

126,065

2,305

1.83

In the Northern Suburban Special Education District ( NSSED ), which comprises the school districts of the northern suburbs of Chicago, and where very stringent criteria are adhered to, the number of cases of autism, almost tripled between 1994-95 and 1998-99. In the same period, the incidence of the disease as compared to the total student population went up by 183%.

Other states chosen at random reported similarly impressive rises in autistic syndromes, among their student population.

On 12/1/1997, The Pennsylvania Department of Education identified 2243 students as autistic among a total school population of 1,1814,081.This incidence is 102% higher than it was four years earlier, on 12/1/1993, when there were 1,072 autistic students in the system..

Similarly in 97-98, Colorado schools had 223 students included in the Autism / PDD ( pervasive developmental disorder) category, 699,135 students in all in the system ( K-12 ), and 66,979 in special education classes, an incidence of 0.03% of the total and 0.33% of the special education population.. In 1992, only 16 students were listed as autistic - PDD.

In the State of Washington, the education department reports the following figures for the last two completed years :

School Year Children with Autism Students K-12 Percent Students in special ed. Percent
1996-1997 672 967,803 0.069 107,732 0.623
1997-1998 957 981,003 0.097 110,465 0.866

In four years in Missouri, the total student population increased by 3.8% while the number of children with autism rose by 123%, as noted in the following table.

Year Students ( K-12 ) Autism % of total students
1994-95  862,459 519 0.06
1995-96  873,638 620 0.07
1996-97  883,327 745 0.08
1997-98  893,241 934 0.10
1998-99  895,304 1.161 0.13

Rhode Island autism figures were scrutinized in somewhat greater detail, because we had access to the actual yearly statistical profiles of special education of the Rhode Island Department of Elementary and Secondary Education.( 5 )

Incidence.

The following table shows that the number of autistic children in Rhode Island more than doubled between June 95 and June 98 :

Year & Date Students K-12 Students in Special Ed # of cases of Autism % of Special Ed  % of totalStudent Body
94-95 6/30/95 146,512 25,143 86 0.34 0.05
95-96 6/30/96 148,524 26,427 120 0.45 0.08
96-97 6/30/97 151,470 27,583 142 0.51 0.09
97-98 6/10/98 152,374 28,558 197 0.69 0.128

The Mean percent of Autism / PDD cases compared to all special education categories increased from 0.063 in June of 95 to 0.105 in June of 97, and the median percent went up from 0.033 to 0.084, in the same period.

We have every reason to believe that this trend will continue to be evident in the next statistical report due June 30, 1999.

Age Distribution

School Year Age 3-5 Age 6-11 Age 12-17 Age 18-21
94-95 21 47 10 8
95-96 26 66 19 9
96-97 32 79 25 6

The higher incidence in the younger two age groups suggests an ongoing and increasing problem.

In Rhode Island, children suspected of having autism, are evaluated by well trained multidisciplinary teams at one or two centers, and seen by a small number of pediatric neurologists and psychiatrists, with particular expertise in the field. The diagnosis is therefore reached with great care, and only when all needed criteria are present. It is only then, that the child is referred to the local school department, where he or she is again reviewed by its team of experts, and appropriately placed.

Neither the school systems, nor the parents, want to include a child in this group, if he or she does not truly belong, and it is therefore probable that the figures we are quoting are on the conservative side, and that the syndrome is actually under diagnosed.

Many of the less severe and less flagrant cases, are possibly listed in other categories, such as Speech Defects, or Behavioral Disorders. On the other hand, some of the more severely affected children may be receiving care in specialized institutions, and therefore not included in the statistics we have quoted.

When we looked at the figures from the different school departments in the 1998 report, we were impressed by several unexpected findings :

Barrington and East Greenwich schools with 5,337 students, had 25 cases of autism, while in West Warwick and Woonsocket there were only 12 autistic children among the 10,343 students.

Providence, Warwick and Cranston, our three largest school populations with 47,736 students, had 32 children listed as autistic or 0.067%, compared to the Barrington, East Greenwich & Lincoln school systems which had 40 cases among their 8,883 students, an impressive 0.450%.

These epidemiological data are very difficult to interpret but the striking differences between the communities, which we do not believe to be artifacts, deserve further study.

We shall continue to monitor the Rhode Island picture to see if this trend continues in the next report.

We are also interested in a cluster of cases in Seekonk, which is quite close to Barrington, and which we will include in our Massachusetts paper, when that State Education Department publishes its report in few weeks.

Having been so impressed with the individual States findings, we decided to go on and review the national picture and the Federal Government's own figures.

National Figures

All states are now mandated to forward yearly reports to the federal government. These are tabulated and available through the Center for Educational Statistics ( 6 ) and then forwarded to the US Congress as annual reports on the implementation of The Individuals With Disabilities Education Act. ( 7 )

The following is a summary of table 52, of the Center for Educational Statistics 1997 report ( 6 ):

Diagnostic classification of students receiving special education services nation-wide:

1991-92 92-93 93-94 94-95 95-96
Autism # in thousands 5 19 24 29 39
% autistic students in Special Ed 0.1 0.4  0.4 0.5 0.7
% autistic students in total 0.01 0.04 0.05 0.07 0.09

We are expecting that the 1998 report of The Center For Educational Statistics, which will be issued in a few days, to show further increases.

It can be reviewed after July 1, by reaching the Center's web site : (http://nces.ed.gov/pubs/digest98/ )

Another internet source will be : http://ed.gov/pubs/index.html ( Government Publications Disability)

Autism and traumatic brain injury were introduced as separate reporting categories in the 1991-92 school year as a result of a 1990 Amendment to P.L. 101-476 :

" The Implementation of The Individuals With Disabilities Education Act ( IDEA )"

"To Assure The Free Appropriate Public Education Of All Children With Disabilities"

Every local school system reports all disabilities under the care of the special education division, to the state department of education, which in turn forwards the reports to the US Education Department which reports yearly to Congress.

It is from those Annual Reports to Congress that the following information was compiled. ( 7 )

Incidence of Autism as compared to all disabilities since reporting of the syndrome became mandatory : Number of students served, ages 6-21, 1990-91 through 1996-97 school years.

Disability 1990-91  1991-92  1992-93  1993-94  1994-95  1995-96 1996-97
Learning disabilities  2,144,017  2,247,004  2,366,487  2,428,112  2,513,977  2,597,231 2,676,299
Speech / language impairments  987,778  998,904  998,049  1,018,208  1,023,665  1,025,941 1,050,975
Mental retardation 551,457  553,262  532,362  553,869  570,855  585,308 594,025
Serious emotional disturbance  390,764  400,211  401,652  415,071  428,168  438,217 447,426
Multiple disabilities  97,629  98,408  103,279  109,730  89,646  94,156 99,638
Hearing impairments  59,211  60,727  60,616  64,667  65,568  68,070 68,766
Orthopedic impairments  49,340  51,389  52,588  56,842  60,604  63,200 66,400
Other health impairments  56,349  58,749  66,063  83,080  106,509  133,416 160,824
Visual impairments  23,682  24,083  23,544  24,813  24,877  25,484 25,834
Autism  NA  5,415  15,580  19,058  22,780  28,827 34,101
Deaf-blindness  1,524  1,427  1,394  1,367  1,331  1,362 1,286
Traumatic brain injury  NA  245  3,960  5,395  7,188  9,443 10,378
All disabilities  4,361,751  4,499,824  4,625,574  4,780,212  4,915,168  5,070,658 5,235,952

Source: U.S. Department of Education, Office of Special Education Programs, Data Analysis System The data for 1990-91 through 1993-94 include children 6 through 21 years of age served under IDEA, Part B and Chapter 1 Handicapped Program. The data for 1994-95 through 1996-97 include all children ages 6 through 21years of age served under Part B ( which includes children previously counted under the Chapter 1 Handicapped Program.)

The diagnosis of autism and autistic spectrum disorders is difficult in early childhood unless the student is severely affected. By the age of six, the clinical picture becomes clearer to everyone concerned, and the inclusion of a child in this category, by error, is most unlikely. Indeed, as mentioned earlier, it is probable that mild cases may be included in other categories.

1997 Report, Section 2, Table II-2.

Number of Children Ages 6-21 Served Under IDEA by Disability: 1987-88 and 1996-97

Disability Number Percent Number Percent Number Percent
Specific Learning Disabilities 1,942,304 47.1 2,676,299      51.1 733,995 37.8
Speech or Language Impairments 953,568 23.1 1,050,975 20.1 97,407 10.2
Mental Retardation 598,770 14.5 594,025 11.4 -4,745 -0.8
Emotional Disturbance 372,380 9.0 447,426 8.6 75,046 20.2
Multiple Disabilities 79,023 1.9 99,638 1.9 20,615 26.1
Hearing Impairments 56,872 1.4 68,766 1.3 11,894 20.9
Orthopedic Impairments 46,966 1.1 66,400 1.3 19,434 41.4
Other Health Impairment 46,056 1.1 160,824 3.1 114,768 249.2
Visual Impairments 22,821 0.6 25,834 0.5 3,013 13.2
Autism 34,101 0.7 34,101
Deaf-Blindness 1,454 <0.1 1,286 <0.1 (168) -11.6
Traumatic Brain Injury 10,378 0.2 10,378
All Disabilities 4,120,214 100 5,235,952 100 1,115,738 27.1

The following entities, listed in the Diagnostic and Statistical Manual , Fourth edition ( DSM IV )

Autistic Disorder (299.00 ) Pervasive developmental disorder, not otherwise specified or NOS ( 299.80 ) Asperger's Disease ( 299.80 ) Rett's Disorder ( 299.80 ) Childhood disintegrative disorder ( 299.10 )

may be included under the category of Autism, or PDD ( Pervasive Developmental Disorder )

The following data was compiled from Appendix A The Twentieth Annual Report to Congress, on the Implementation of the Individuals with Disabilities Education Act (IDEA). 1998.

Number of children, age 6-21, with Autism, Speech and language Impairments, Emotional Disturbances and all disabilities in the 50 United States, the District of Columbia and Puerto Rico.

Table AA9, pages A-30, A-22, A-24, A-20

Autism, speech and language impairments, and emotional disturbances, were compared because symptoms of all three entities are somewhat similar.

1993-94 1994-95 1995-96 1996-97 Increase 93-97
Autism 19,048 22,768 29,057 34,082 79%
Speech & Language Impairments 1,016,404 1,021,568 1,024,959 1,049,075 3.2%
Emotional Disturbances 414,483 427,573 438,525 446,635 7.75%
All Disabilities 4,769,631 4,903,958 5,067,606 5,224,328 9.5%

During the equivalent 1987-88 to 1993-94, in which autism figures were not tallied, the total number of disabilities rose from 4,110,690 to 4,769,631 an actual rate of increase of 16%.

This decrease in the percentage rate of all disabilities, between the two periods, makes the striking jump in the incidence of autism, all the more significant. ***** Tables AA2 to AA6, page A2-A14 Age of the children served under IDEA, Part B., 1996-97

Of the 34,082 autistic children aged 6-21 under IDEA, there were 21,465 aged 6-11 versus 10,005 aged 12-17 and 2626 aged 18-21.

Table AA 14, page A43, Number of children with autism & total disabilities by age group, 1991-92 through 1996-97 school years.

Ages 6-11 12-17 18-21
Autism All Disabilities Autism All Disabilities Autism All Disabilities
1990-91 x 2,299,478 x 1,831,868 x 230,405
1991-92 3,046 2,355,560 1,749 1,911,681 620 232,583
1992-93 8,914 2,399,196 4,89 1,990,085 1,773 235,573
1993-94 11,158 2,458,351 5,832 2,078,915 2,068 242,093
1994-95 13,716 2,515,485 6,760 2,153,448 2,188 238,578
1995-96 17,666 2,585,703 8,796 2,240,664 2,614 252,584
1996-97 21,465 2,654,285 10,010 2,323,596 2,626 258,071

Autism has been increasing at a faster rate than all other disabilities, and the much higher numbers in the younger age groups suggest that this trend will continue into the next century.

Discussion

Autism is a National Emergency.

Because of the tremendous increase we have reported, it is a serious epidemic.

Certain families seem to have a genetic predisposition to a fragile immune system. If a mother is repeatedly exposed to certain antigens or environmental factors, she develops antibodies against them, which she transmits to her children. If the immature immune system of those children is attacked, early in life, by several simultaneous antigenic insults, violent complex immune reactions take place, which affect their whole body, but particularly their active brain centers, leading to autism. Many afflicted children are born completely normal, and only develop symptoms at age two to four, and sometimes later. At this time, the only on- going research is looking at a genetic cause for the disease. It has not so far, and will probably not, yield major findings. More importantly, it is unlikely to lead to a reduction in the incidence of this dreadful disease. Research should therefore be focused on any and all new environmental insults affecting this generation of children, and their parents', and only then, will we be able to stop this epidemic, by removing these offenders. It is therefore imperative that the Federal Government undertake independent, and far reaching studies of all possible factors.

Smart pediatricians, when faced with obscure diagnoses, always ask parents : "Can you tell me what you think caused the problem?" "What do you think happened ?"

The same questions should be asked of parents of autistic children, to find out where to start looking for answers.

Meanwhile, all involved parents and groups, as well as overwhelmed school authorities, should band together to pressure the Federal Government to respond.

We are talking about forty thousand precious children.

See also Autism 2000

References

1. 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/autismreport.cfm

2. Assessment, Evaluation and Support Unit, Special Education Division, California Department of Education

3. Total Enrollment And Percent of Pupils With Disabilities By Federal Categories Office of Special Education Programs New Jersey State Department Of Education.

4. Illinois State Board of Education Report ( 8/20/98)

5. Rhode Island Department of Elementary and Secondary Education. Annual Statistical reports.

6. The Center for Education Statistics  http://nces.ed.gov/ 1997 Report http://nces.ed.gov/pubs/digest97/

7. Twentieth Annual Report to Congress on the implementation of The Individuals With Disabilities Education Act. http://www.ed.gov/offices/OSERS/OSEP/OSEP98AnlRpt/

Nineteenth Annual report to Congress on the implementation of The Individuals With Disabilities Education Act. http://www.ed.gov/offices/OSERS/OSEP/OSEP97AnlRpt/

Eighteenth Annual Report to Congress on the implementation of The Individuals With Disabilities Education Act. http://www.ed.gov/offices/OSERS/OSEP/OSEP96AnlRpt/

Seventeenth Annual Report to Congress on the implementation of The Individuals With Disabilities Education Act.  http://www.ed.gov/offices/OSERS/OSEP/OSEP95AnlRpt/

Sixteenth Annual Report to Congress on the implementation of The Individuals With Disabilities Education Act.  http://www.ed.gov/offices/OSERS/OSEP/OSEP94AnlRpt/

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