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Assessment for Identification
Overview
The diagnosis of autism spectrum disorder (ASD) presents a maze of questions that
can be perplexing for both parents and educators. When is the right time to seek an
assessment? Who should conduct the assessment? What should be included in the
assessment? This module will provide guidelines to help parents and educators to
navigate this maze.
Module Objectives
The learner will:
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Identify the main reason why early identification is important
Identify two challenges to early identification
Name the most important factor to consider in selecting a professional to conduct
an autism assessment
Describe the difference between diagnosis and eligibility
Describe the difference between interdisciplinary assessment and multidisciplinary
assessment
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When is the right time to refer for an
assessment?
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The importance of early identification and treatment of autism spectrum disorders
(ASD) has been well established. Parents and educators should seek
assessment as soon as signs become evident. Early symptoms of ASD may be
apparent by the age of 12 to 18 months or sooner (see Table 1). While diagnosis
is often possible by the age of 2 (Lord & Spence, 2006), most children are not
identified until years later. Indeed, there is typically a delay of two to three years
after symptoms first become apparent (Filipek et al., 2000). Because early
intervention makes a critical difference in the progress of individuals with ASD,
delay in identification is a matter of great concern (Siklos & Kerns, 2007).
The American Academy of Pediatrics released a clinical report with
guidelines for identification of children with ASD (Johnson, Myers, &
Council on Children with Disabilities, 2007). The guidelines stress the
importance of early intervention and contain recommendations to conduct
observation for ASDs at every well-child visit and to formally screen at 18
and 24 months or at any point a parent raises concern. When multiple risk
factors are present, it is recommended that the physician avoid adopting a
"wait-and-see" approach. The report discusses the importance of a team
evaluation conducted by specialists in ASDs.
What factors contribute to early or
delayed identification?
Many factors, including symptom severity, race, gender, and attitudes towards
diagnosis, contribute to delays in identification. Children with more severe
communication deficits tend to be diagnosed at younger ages than are those with
primarily pragmatic language (social language) challenges. As a result, the average age
of diagnosis of autism is four to five years earlier than the average age of identification
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for Asperger Syndrome. Special awareness of the relationships between race and
gender with early identification is also needed. Research has found that AfricanAmerican children are identified later and receive alternative diagnoses prior to being
identified with an ASD (Mandell, Ittenbach, Levy, & Pinto-Martin, 2006). Further, it is
well established that girls are diagnosed at a later age than are boys. Finally, evaluators
sometimes hesitate to assign a diagnosis because of fear of the impact of the label or of
misdiagnosis. Parents may hesitate to accept the diagnosis for the same reasons.
Given the benefits of early intervention, the risk associated with delayed identification is
greater, however.
"Early identification of children with autism and intensive, early intervention
during the toddler and preschool years improves outcome for most young
children with autism" (Filipek et al., 2000, p. 468).
Who should conduct the assessment?
An extensive body of literature is available on the best instruments and techniques for
identifying ASD; however, even the best instruments are meaningless when those
interpreting them do not have the training and experience to make accurate judgments.
Assessment of ASD may be completed by a number of professionals, including
psychologists, neurologists, pediatricians, or psychiatrists. Parents and educators
should be careful not to make assumptions about the knowledge base of professionals.
In each of these fields, there are those who are knowledgeable about ASD assessment
and those for whom this is not a strength. It is most important to find specialists who are
knowledgeable about and experienced in assessing ASD. The field of the professional
is less important than expertise.
Case Study: Brad
Brad was referred for an evaluation for special education when he was in the first grade.
At that time, Brad did not have a medical diagnosis of any autism specrtum disorder
(ASD). His parents indicated that they believed that there was always something
"different" about him-he was delayed in learning to walk and talk and did not play with
his peers. According to his parents, since Brad was 2 years old, his pediatrician had
always held that he would "grow out of it" and encouraged them not to worry.
Brad's teacher noted that he was having great difficulty completing work and socializing
with his classmates. Knowing the importance of early intervention, she encouraged
Brad's parents to consent to the referral process. The interdisciplinary team found Brad
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to be eligible for special education under the category of autism. The assessment team
made recommendations for services. In the following months, Brad began to make
significant improvement.
How do I avoid common pitfalls?
Seeking assessment from an experienced and knowledgeable professional prevents
delay in accurate identification and frustration of unanswered questions. Many parents
describe experiences of being told that their child is "going through a phase" and that
they need to be patient while their child "grows out of it." Other parents report that they
have been advised that a single behavior, such as showing affection or using
sentences, indicates that their child cannot have an ASD. These same parents may
later learn that their child has the diagnosis. Early encounters with professionals who
provided false reassurance may sabotage parents' receptiveness to the input of others
who recognize the symptoms of ASD exhibited by their child. Alternatively, the error of
incorrectly assigning the diagnosis of an ASD carries risks. Working with professionals
with expertise in ASD helps to avoid these and other pitfalls.
What is the difference between
diagnosis and eligibility?
Parents and educators should know that the terminology surrounding assessment can
be confusing. In particular, the terms medical diagnosis, diagnosis, and eligibility are
often misunderstood. While the term medical diagnosis is often used, it is a misnomer.
"There are no medical tests for diagnosing autism. An accurate diagnosis must be
based on observation of the individual's communication, behavior, and developmental
levels" (Autism Society of America, n.d.). Wide use of the term has resulted in the false
belief that the diagnosis must be made by a medical professional. In fact, in the
absence of specific medical concerns, many specialized teams do not require staff with
medical training.
"There are no medical tests for diagnosing autism. An accurate diagnosis must
be based on observation of the individual's communication, behavior, and
developmental levels" (Autism Society of America, n.d.).
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The contrast between diagnosis and eligibility is subtle (see Table 2). The term
diagnosis is most often used in assessments conducted in the private sector. These
include assessments completed at medical facilities, by private neurologists or
psychologists, or other private providers. Diagnosis in the United States is most often
based on the current edition of the Diagnostic and Statistical Manual (DSM-IV-TR). In
this system, the umbrella category of Pervasive Developmental Disorders encompasses
Autistic Disorder; Pervasive Developmental Disorders - Not Otherwise Specified,
Asperger's Disorder, and others.
Assessment in the public school system is conducted for the purposes of establishing
eligibility for special education services and gathering information to assist in planning
an individualized program for the child. The Individuals with Disabilities Education Act
(IDEIA), federal legislation, has defined the eligibility category of "autism" as a disability
that affects communication and social interaction. When there is a need for an
assessment to determine eligibility for ASD (or any eligibility category), it is the
responsibility of the public schools to provide it at no expense to the family. According to
IDEIA, ASD may have associated features such as repetitive activities, stereotyped
movements, resistance to change, and unusual sensory responses. Students with
characteristics of DSM-IV-TR diagnoses, including Autistic Disorder, Asperger's
Disorder, Pervasive Developmental Disorders, Not Otherwise Specified or other ASD,
may qualify under the eligibility category of "autism." They may also qualify for special
education services under another eligibility category, based upon their unique
characteristics. A disability must have an adverse effect on a student's education in
order for him to be considered eligible for special education services, and must require
specially designed instruction. Therefore, a previous diagnosis of ASD in the private
sector, does not necessarily result in eligibility for special education services in the
school setting. Unfortunately, school teams sometimes fail to consider educational
factors beyond academics. As a result, academically capable students with ASD who
display deficits in socialization that impact educational progress often are not served.
Each eligibility decision is based on a multi-factored evaluation of the individual student.
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What should be included in an
assessment?
Autism spectrum disorders are classified as pervasive developmental disorders. This
means that multiple areas of functioning are impacted. Due to the complex nature of
ASD, a comprehensive assessment that addresses a range of areas must be conducted
by professionals with expertise across several fields. This is best accomplished using
an interdisciplinary approach.
A comprehensive autism spectrum evaluation should include the child's developmental
history, observations, direct interaction, parent interview, and evaluation of functioning
in the following areas: social, communication, sensory, emotional, cognitive, and
adaptive behavior. At times, additional assessments are indicated. For example,
significant motor difficulties or suspicion of seizures require further evaluation. By
gathering information across multiple areas, a complete diagnostic picture can be
obtained. A thorough assessment helps parents and educators to make more
comprehensive treatment decisions. The results of the ASD evaluation should be
summarized in a written report and include specific and meaningful recommendations.
The evaluation should be followed by a face-to-face feedback session with the
opportunity for parents to ask questions
What is the difference between
interdisciplinary and multidisciplinary
assessment?
An interdisciplinary approach to assessment results in the strongest diagnostic and
programming decisions. The word interdisciplinary is not interchangeable with the word
multidisciplinary. While both approaches involve professionals from various fields, only
in interdisciplinary assessment do professionals work in a truly collaborative manner to
integrate information for diagnostic and programming decisions. In contrast, in a
multidisciplinary approach, results are compiled, rather than integrated, and decisions
are made with little collaboration across areas of specialty.
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Participants on interdisciplinary assessment teams should have expertise in their own
field as well as in ASD. Assessment teams typically include a speech pathologist and a
psychologist. Based on the needs of the individual, additional team members may
include a specialist in cognitive assessment, an occupational therapist, a physical
therapist, or a medical professional. Federal law mandates that autism spectrum
assessments in the schools be conducted by individuals from multiple disciplines. In
contrast, there is no such requirement in the private sector. In both the public schools
and the private sector, assessments can range in quality (from a diagnosis jotted down
on a prescription pad to a thorough interdisciplinary team assessment report). Parents
and educators should ask questions about the approach being used. Another area to
consider is the scope of the ASD assessment. As stated previously, there is no one
factor that should determine whether an individual does or does not have an ASD.
Assessments should address all areas of development to truly look at the unique
characteristics of ASD.
Case Study: Lisa
Lisa a fourth grader, was referred for an evaluation in the public school. When the
interdisciplinary team met with Lisa's parents, they revealed that Lisa had previously
received an extensive multidisciplinary private evaluation that had resulted in the
diagnosis of attention-deficit/hyperactivity disorder (ADHD). Review of the previous
report by the school team revealed adequate information to suggest that Lisa might
meet the eligibility requirements for identification as a student with an autism spectrum
disorder (ASD). In response, the school team completed an interdisciplinary
assessment that ultimately indicated that Lisa's profile contained strengths and
challenges that most resembled that of ASD. The school team subsequently
recommended eligibility for special education under the category of autism. The school
team considered the possibility that, because the private multidisciplinary team did not
integrate the results from the varied professionals involved, their conclusion failed to
capture Lisa's total picture. This example highlights the strength of interdisciplinary
assessment.
Summary
There are important benefits of early identification and treatment based on accurate and
comprehensive assessment. In contrast, incomplete assessment results in a limited
understanding of strengths and needs and, in turn, can lead to decrease quality of care
due to unidentified needs. Because of the importance of early identification, parents and
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educators should learn the signs of ASDs and refer for screening and assessment if
symptoms are observed. Parents and educators may further advocate for children by
seeking a comprehensive, interdisciplinary assessment completed by evaluators who
are knowledgeable and experienced in assessing ASDs.
Discussion Questions
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1. Defend the following statement: The field of the
professional is less important than expertise.
The best instruments are meaningless when those interpreting them do not
have the training and experience to make accurate judgments. Seeking
assessment from an experienced and knowledgeable professional prevents
delay in accurate identification and the frustration of unanswered questions.
Early encounters with professionals who provided false reassurance may
sabotage their receptiveness to the input of others who recognize the
symptoms of ASD exhibited by the child. Alternatively, the error of incorrectly
assigning the diagnosis of an ASD carries risks. Working with professionals
with expertise in ASD helps to avoid these and other pitfalls.
Citation and References
If included in presentations or publications, credit should be given to the authors of this
module. Please use the citation below to reference this content.
Aspy, R., & Grossman, B. (2008). Assessment for identification: Online training module
(Plano, TX: The Ziggurat Group). In Ohio Center for Autism and Low Incidence
(OCALI), Autism Internet Modules, www.autisminternetmodules.org. Columbus, OH:
OCALI.
Assessment for Intervention References
Autism Society of America. (n.d.). Diagnosis and consultation. Retrieved July 17, 2007,
from http://www.autismsociety.org/site/PageServer?pagename=about_whatis_diagnosis
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Baranek, G. T. (1999). Autism during infancy: A retrospective video analysis of sensorymotor and social behaviors. Journal of Autism and Developmental Disorders, 29, 213224.
Clifford, S., Young, R., & Williamson, P. (2007). Assessing the early characteristics of
autistic disorder using video analysis. Journal of Autism and Developmental Disorders,
37, 301-313.
Filipek, P. A., et al. (2000). Practice parameter: Screening and diagnosis of autism:
Report of the Quality Standards Subcommittee of the American Academy of Neurology
and the Child Neurology Society. Neurology, 55, 468-479.
Individuals with Disabilities Education Improvement Act (IDEA) of 2004, PL 108-446, 20
USC 1400 et seq.
Johnson, C. P., Myers, S. M., & the Council on Children with Disabilities. (2007).
Identification and evaluation of children with autism spectrum disorders. Pediatrics,
120(5), 1183-1215.
Lord, C., & Spence, S. (2006). Autism spectrum disorders: Phenotype and diagnosis. In
S. Moldin & J. Rubenstein (Eds.), Understanding autism: From basic neuroscience to
treatment (pp. 1-23). New York: CRC Taylor and Francis.
Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2006). Disparities in
diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism
and Developmental Disorders
Osterling, J., & Dawson, G. (1994). Early recognition of children with autism: A study of
first birthday home videotapes. Journal of Autism and Developmental Disorders, 24,
247-257.
Osterling, J., Dawson, G., & Munson, J. (2002). Early recognition of 1-year-old infants
with autism spectrum disorder versus mental retardation. Developmental
Psychopathology, 14, 239-251.
Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of a small
sample of parents of children with autism spectrum disorders. Research in
Developmental Disabilities, 28, 9-22.