Why Youngsters With Autistic Spectrum Disorders Remain Underrepresented

Why Youngsters With Autistic Spectrum Disorders Remain Underrepresented
in Special Education

By Safran, Stephen P

Although numerous investigations have examined the prevalence of
autistic spectrum disorders (ASD) in the general population, have
special education identification rates of autism kept pace? From the
1992-1993 to 2001-2002 school years, U.S. Department of Education data
indicate an increase from 15,580 to 97,904 students with autism, an
expansion of 528% and an annual average growth of 22.69%. The number of
students with autism per 10,000 public school enrollees has
correspondingly increased from 3.64 to 20.53 during this period. Despite
this expansion, there remains a substantial gap between students
identified with autism under the Individuals With Disabilities Education
Act and current prevalence estimates of ASD, in large part due to
underidentification of youngsters on the higher functioning end of the
spectrum. Keywords: autism; autistic spectrum disorders; identification;
special education

In recent years, there has been a dramatic increase in the number of
individuals clinically or medically diagnosed with autism and related
conditions, often referred to as autistic spectrum disorders (ASD) or
pervasive developmental disorders (PDD; Charman, 2002; Fombonne, 2003b).
Although explanations of this estimated threefold to fourfold increase
over the past 30 years (Fombonne, 2003b) are preliminary, changes in
diagnostic criteria; heightened awareness among the public, parents, and
professionals; recognition that ASD can be dual-diagnosed with other
conditions; as well as enhanced service access are often cited (Wing &
Potter, 2002). Whereas numerous studies investigate the prevalence of
ASD in the general population (Croen, Grether, Hoogstrate, & Selvin,
2002; Fombonne, 2003a), there has been scant attention concerning the
number of students with autism declared eligible for special education
services (Sturmey & James, 2001). (In this article, ASD or PDD is used
as the broader medical/clinical term, whereas autism refers to the
disability category under the Individuals With Disabilities Education
Act [IDEA].) Furthermore, whereas the prevalence rate of ASD in the
general population has been dramatically expanding, have identification
rates kept pace in the public schools?

To address this issue, this article examines trends in the number of
students identified with autism since the U.S. Department of Education
first required states to report these data for school year 1992-1993.
What has been the rate of increase in the number of students identified?
How do current prevalence estimates of ASD in the general population
compare with special education classification rates of autism? To what
extent are pupils with ASD potentially being underidentified for special
education services under the category of autism?

Contrasting Clinical Diagnosis and Special Educational Identification

The initial step in identifying any clinical or special education
population involves defining the disorder or disability. The concept of
autism has undergone a significant transformation since Kanner's seminal
1943 paper (Tidmarsh & Volkmar, 2003). Earlier considered a rare
condition almost exclusively associated with mental retardation,
research during the late 1980s and the 1990s modified this view (Wing &
Potter, 2002). Within the clinical and research communities, as the
notion of a "spectrum" of autistic disorders became more accepted,
studies on the prevalence of ASD began to generate substantially larger
numbers (Tidmarsh & Volkmar, 2003; Wing & Potter, 2002).

The educational definition of autism under IDEA (Individuals With
Disabilities Act Regulations, 1999) has both similarities and
differences when compared with the Diagnostic and Statistical Manual of
Mental Disorders-Fourth Edition, Text Revision (DSM-IV-TR; American
Psychiatric Association, 2000):

Autism means a developmental disability significantly affecting verbal
and nonverbal communication and social interaction, generally evident
before age 3, that adversely affects a child's educational performance.
Other characteristics often associated with autism are in repetitive
activities and stereotyped movements, resistance to environmental change
or change in daily routines, and unusual responses to sensory
experiences. The term does not apply if a child's educational
performance is adversely affected primarily because the child has an
emotional disturbance, as defined by IDEA criterion. A child who
manifests the characteristics of "autism" after age three could be
diagnosed as having "autism" if the criteria in the preceding paragraph
are met. (Individuals With Disabilities Act Regulations, 1999)

In contrasting the educational and clinical definitions, Dahl (2003)
emphasized that both include deficits in social interaction, in addition
to verbal and nonverbal communication. The IDEA definition, however,
requires that these characteristics must have a negative impact on
educational performance. Moreover, whereas onset can be expected by age
3, this does not preclude diagnosis or development of autistic
tendencies at a later age. For example, research hi the United Kingdom
indicates that children with Asperger syndrome are on the average
identified at a later age (11.13) compared with youngsters with autistic
disorder (5.49; Howlin & Asgharian, 1999). Therefore, youngsters on the
higher functioning end of the spectrum, whose symptoms often are masked
during early childhood (Safran, 2005), can be identified for special
education services at an older age under the category of autism.

The clinician and special educator do not use the same diagnostic or
identification criteria (Dahl, 2003). Overall, the IDEA definition of
autism is considered broad and flexible enough to include students who
exhibit a range of behaviors that are included within all ASD subtypes
(Fogt, Miller, & Zirkel, 2003; Shriver, Alien, & Mathews, 1999).
However, many individuals may not receive both an educational and
clinical diagnosis. For instance, a student can be found eligible for
special education services without a clinical diagnosis of any ASD
subtype, or a clinically diagnosed youngster may not receive special
education services. Furthermore, a child with a clinical diagnosis of
any ASD condition can be identified under other special education
categories, often mental retardation or other health impaired (Dahl,
2003). However, the actual number of children with ASD receiving special
education services under all categories, including autism, has yet to be
systematically examined (see YearginAllsopp et al. [2003] and Bertrand
et al. [2001] for preliminary data). Furthermore, although the frequency
of IDEA due process hearings and legal decisions encompassing autism
have increased, only 13 of the 290 (4.5%) identified by Fogt et al.
(2003) involved differences over eligibility. This evidence suggests
that the educational definition of autism is operationally acceptable to
both the legal and advocacy communities.

Prevalence Estimates of Autistic Spectrum Disorders

What is the prevalence of children with ASD? Whereas this appears to be
a straightforward question, an accurate answer challenges researchers
and epidemiologists throughout the world (Baker, 2002; Chakrabati &
Fombonne, 2001; Scott, Baron-Cohen, Bolton, & Brayne, 2002). Differences
in prevalence estimates across studies can result from methodological
variability, including differences in definition, geographic area,
and/or strategies used to identify/ diagnose individuals (Fombonne,
2003a). In the United States there have been three widely cited studies
of the prevalence of ASD: the California Developmental Services
investigation (California Department of Developmental Disabilities,
1999; Croen, Grether, Hoogstrate, et al., 2002; Croen, Grether, &
Selvin, 2002); the Centers for Disease Control and Prevention's (CDC's)
Atlanta, Georgia, examination (Yeargin-Allsopp et al., 2003), and the
CDC's Brick Township, New Jersey, inquiry (Bertrand et al., 2001). Each
of these investigations, however, used widely varying methodological
approaches, and the accuracy of their results has been questioned
(Fombonne, 2003a, 2003b).

Arguably the most current and accurate prevalence estimates of combined
ASDs can be derived from Fombonne's (2003a) review of epideniiological
studies. Analyzing international research, he suggested a conservative
estimate of 27.5 per 10,000 but supported a more realistic number of
60.0 per 10,000, a figure corroborated by Charman (2002). Based on U.S.
census data from 2000, and his conservative estimate, Fombonne (2003a)
presented his approximation for the number of individuals under 20 with
all subtypes of ASD. To expand on his figures, I also include in Table 1
his higher rate of 60.0 per 10,000. According to these estimates, there
are between 221,301 and 482,840 individuals with all types of ASD under
the age of 20 based on year 2000 census data.

Examining Special Education Identification Trends

To what degree are youngsters with ASD potentially underrepresented in
special education under the category of autism compared with current
prevalence estimates? To address this question, my first step was to
identify trends related to the number of students identified with autism
under IDEA. These data are based on annual reports of the implementation
of the Individuals With Disabilities Education Improvement Act
(previously IDEA and PL 94- 142), beginning with the 1991-1992 school
year (U.S. Department of Education, 1992) until the most recently
released head counts for the 2001-2002 school year (U.S. Department of
Education, 2002). Statistics were collected using electronic versions of
these reports starting in 1995, with earlier hardcopy editions utilized
between 1992 (U.S. Department of Education, 1992) and 1994. By law, all
states are required to yearly submit the number of students identified
by special education category. Although autism identification rates were
first collected in 1991-1992, required reporting by the states began in
1992-1993 (U.S. Department of Education, 2002). As a result, only
figures starting from 1992-1993 are reported. In addition, the most
recent report available (U.S. Department of Education, 2002) also
incorporates retrospective identification data derived from previous
editions. In instances where a discrepancy exists between earlier
reported figures and those most recently released, more recent numbers
are included. Enrollment statistics pertaining to the entire public
school population were retrieved from Department of Education online
sources rounded to the nearest thousand (National Center for Education
Statistics, 2004). * How many students have been identified under the
category of autism under IDEA for each school year between 1992-1993 and
2001-2002? What has been the annual rate of increase?

The number of students ages 3 to 22 identified with autism reported by
the federal government has increased from 15,580 in 1992- 1993 to 97,904
in 2001-2002, an increase of some 528% (see Figure 1). Annual increases
from 1993-1994 to 2001-2002 varied from a low of 18.22% in 1996-1997 to
a high of 27.15% in 1995-1996, with an average annual increase of 22.69%
(see Figure 2).

* What percentage of all students with disabilities under IDEA have been
identified with autism between 1992-1993 and 2001-2002?

To analyze the growth of the number of students with autism relative to
all pupils with disabilities, percentages were calculated. As
illustrated in Figure 3, this number has grown each successive year,
from a low of 0.34% in 1992-1993 to a high of 1.66% in 2001-2002.

* What has been the rate of students identified with autism per 10,000
students enrolled in public schools between 1992-1993 and 2001-2002? How
does this compare with current prevalence estimates of ASD in the
general population?

To make a more meaningful comparison between children identified with
autism in the public schools and prevalence estimates derived from
epidemiological studies, the number of students with autism was compared
with total national public school enrollment. The number of students
varied from a low of 3.64 per 10,000 in 1992-1993 to a high of 20.53 in
2001-2002 (see Figure 4). This latter figure, though representing a
substantial growth rate, remains approximately 6.97 per 10,000 below
Fombonne's (2003a) conservative estimate of 27.5 per 10,000, or
approximately 33,227 students based on a total public school enrollment
of 47,672,000 for Fall 2001 (National Center for Education Statistics,
2004) . Furthermore, the IDEA figures are approximately 39.47 per 10,000
below his more realistic number of 60.0 per 10,000, or an estimated
188,161 students.

* What were the number of students identified with autism at each age
between 3 and 22 during the most recent school year?

As illustrated in Figure 5, the largest number of students identified
with autism under IDEA per age group are 9-year-olds (n = 11,641),
followed by ages 8 (n = 11,379) and 7 (n = 11,121). As can be perused
from these numbers, there appears to be a "plateau" from ages 6 to 9,
followed by a consistent decrease starting at age 10.

Why Youngsters With Autism Remain Underidentified in Special Education

Whereas prevalence estimates of individuals with ASD has dramatically
expanded (Charman, 2002; Fombonne, 2003a), has the number of students
identified with autism under IDEA kept pace? On the surface, comparing
1992-1993 to 2001-2002 data from the U.S. Department of Education (1992,
2002) reflect several noteworthy accomplishments: a 528% increase in the
number of students identified (from 15,580 to 97,904), an expansion in
the student classification rate (from 3.64 to 20.53 per 10,000 public
school pupils), plus an average annual growth rate of 22.69%. Despite
these extensive efforts, it is my view that youngsters with ASD remain
underrepresented in special education.

Whereas estimating special education identification rates is a haphazard
business, whole population prevalence estimates can provide insights
into future classification needs. If the number of students identified
with autism is equivalent to current ASD prevalence estimates, somewhere
between 27.5 and 60.0 per 10,000 (Bertrand et al., 2001; Fombonne,
2003a), and we combine this with a Fall 2001 public school enrollment of
47,672,000 (National Center for Education Statistics, 2004), the number
of students with autism can be projected at between 131,098 and 286,032,
or a required increase of between 34% to 192% from the 2001-2002
identification count of 97,904. If, and this is a big if, prevalence
estimates of ASD can serve as a general guide for future growth, there
potentially remain tens of thousands of public school students yet to be
identified with autism according to the most recent federal figures
available at time of writing. If a near-term annual growth rate of 20%
is maintained, plus applying Fombonne's (2003a) best estimate of 60.0
per 10,000 individuals (286,032 students with autism), this
identification rate would be reached during the 2007- 2008 school year.
Realistically, a 20%-plus annual growth rate cannot be sustained
indefinitely as funding pressures spiral due to budget restraints.

Whereas I believe that there is a strong case for identifying greater
numbers of students with autism, this position is arguable for several
reasons. First, although actual figures are unknown, many children with
ASD are identified in other special education disability categories such
as mental retardation or other health impaired (Bertrand et al., 2001;
Yeargin-Allsopp et al., 2003), thereby reducing the number classified
with autism. second, prevalence estimates derived from epidemiological
research are just that, estimates of population size. These figures
differ from "administrative" head counts such as special education
identification numbers where funding may be the dominant factor in
determining population size. Third, the diagnostic criteria for all
subtypes of ASD and the special education definition of autism, though
overlapping, differ and will invariably result in different eligibility
and diagnostic decisions.

Where on the autistic spectrum can future increases in identification be
projected to emanate from? Although exact numbers are currently
unavailable, it is probable that professionals in early intervention and
special education have already identified the vast majority of children
on the lower end of the spectrum. These youngsters are diagnosed at an
earlier age, and their symptoms are more visible to families and
professionals (Howlin & Asgharian, 1999). As investigations in the
United States corroborate (Bertrand et al., 2001 ; Yeargin-Allsopp et
al., 2003), higher functioning youngsters with ASD, such as those
diagnosed with Asperger syndrome, whose symptoms are often more subtle
and may be masked due to average to above-average intellectual
functioning, academic achievement, and language abilities, are either
identified at an later age or not at all (Howlin & Asgharian, 1999;
Safran, 2005). Although progress has been made, there remain many more
youngsters on the higher end who remain unidentified. For these
youngsters, whose social skills deficits, unusual mannerisms, rigidity,
and lack of empathy are often wrongfully interpreted as purposefully
rude and inappropriate, life challenges are no less real (Safran, 2001).
It is with this group of children that future special education
identification resources must be focused.

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Stephen P. Safran

Ohio University, Athens

Author's Note: This research was completed during the author's faculty
leave at Ohio University during academic year 2005-2006. Please address
correspondence to Stephen Safran, PhD, Ohio University, Dept. of Teacher
Education, College of Education, McCracken Hall, Athens, OH 45701;
e-mail: safran@ohio.edu.

Stephen P. Safran, PhD, is a professor of special education at Ohio
University, Athens. He received his PhD at the University of Virginia in
special education. His current research, presentation, and training
interests include school-wide positive behavior supports and autistic
spectrum disorders/Asperger syndrome.

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Published: 2008/06/14 03:00:33 CDT