Autism Diagnosis Training Issues
Taken from a Diagnostic Grant Proposal (2003) for the Do2learn Foundation, Principal Investigator Dr. Marcia Mandel (2003)

Autism is a developmental disorder characterized by impairments in communication and socialization, and by restricted and repetitive behavior. The disorder often causes severe impairments in the functioning of young children and can have devastating effects on individuals and their families. In the past the disorder was thought to occur in five out of 10,000 children, but recent estimates of its prevalence range from one in 200 to one in 1000 in the United States (Filipek et al., 1999; Marcus, Flagler, & Robinson, 2001). While the exact reasons for the change in prevalence of autism are not known, there are indications that it is due at least in part to improved identification of young children in need and to the expansion of the autism diagnosis to include autism spectrum disorders (Croen, Grether, Hoogstrate, & Selvin, 1997; Yeargin-Allsopp et al., 2003). This increase in prevalence and the distress of families coping with the problem has resulted in recognition of the need for heightened efforts to determine the causes of autism, develop improved methods for treating the disorder, and increase the ability of professionals to identify children in need and provide the appropriate intervention for them and their families.

Early Diagnosis of Autism
One area of particular concern is the need for early diagnosis (Filipek et al., 1999). In a comprehensive review of the scientific evidence concerning autism in young children, the Committee on Educational Interventions for Children with Autism of the National Research Council (2001) recommended a focus on early intervention and screening and multidisciplinary evaluations, as well as follow-up diagnostic and educational assessment 1-2 years after the initial evaluation. These evaluations are critical in helping families access the services their children need. Despite improvements in service availability, parents continue to report delays in obtaining accurate information about their children’s needs (Filipek et al., 1999; Howlin & Moore, 1997). In a recent study of the prevalence of autism in Atlanta, Georgia, 62% of the children identified by the study as having autism had a previous diagnosis of autism, 19% were suspected of having autism, and 18% had a diagnosis other than autism or no diagnosis (Yeargin-Allsopp et al., 2003).

Several factors have increased the demand for diagnostic services, particularly for very young children. Since 1986, federal law P. L. 99-457 has focused efforts on providing services for children under the age of five who are at risk for or have developmental delays, and mandated services include multidisciplinary evaluations (Short, Simeonsson, & Huntington, 1990). Research has demonstrated the importance of early intervention for children with autism (Filipek et al., 1999; Handleman & Harris, 2001; National Research Council, 2001), leading to efforts to educate primary care providers about the need to screen young children for developmental problems and refer them for appropriate evaluations (American Academy of Pediatrics, 2001; Filipek et al., 1999). Finally, recent progress in methods of diagnosing very young children with autism have resulted in the ability of professionals to reliably identify the disorder in children as young as two years old (Lord, C., 1995; Lord, Rutter, DiLavore, & Risi, 2002; Stone et al., 1999).

The diagnosis of autism is dependent on a clinician’s application of behavioral descriptions of the child to the definition of the disorder outlined in the Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) (American Psychiatric Association, 1994). This in turn depends on a complex process that involves gathering information from a variety of sources, since there are no biological markers that can identify the disorder. While studies have shown that autism can be reliably diagnosed using DSM-IV criteria, several factors increase the complexity of the process, including the broad range of expression in the severity of the three primary symptoms, the range of intellectual functioning seen in individuals with autism, and the additional categories of pervasive developmental disorders now described in the DSM-IV (Klin, Lang, Cicchetti, & Volkmar, 2000). Although there are several tools available to aid clinicians in making the diagnosis (Lord, 1997), clinical experience is critical to the accuracy of the final conclusion (Klin et al., 2000). Due to the possible range of severity of the symptoms of autism, it is important that clinicians be able to identify mild as well as severe manifestations of the relevant behaviors, and diagnostic tools rely on ratings of behaviors over a range of severity (Lord et al., 2002; Schopler, Reichler, DeVellis, & Daly, 1980).

For very young children, differences in social behavior and communication, such as empty gaze, abnormal response to sound, deficits in directing attention, abnormal play, and deficits in looking at faces, pointing, orienting to name, and showing objects have been shown to differentiate children who were later diagnosed with autism from typically developing children. However, research has often confounded the factor of mental handicaps or general developmental delay and autism, leading to efforts to distinguish this problem and the child’s level of language development from characteristics of autism during the diagnostic process (Lord et al., 2002). In a study designed to discriminate autistic children from those with communicative and cognitive deficits using prospective methods, Lord (1995) found that deficits in social-communication skills such as directing attention, seeking to share enjoyment, use of another’s body as a tool, interest in other children, attention to voice, pointing, and understanding gestures were key in diagnosing two- and three-year-olds with autism.

Professional Training Issues
The complexities of the diagnostic process combined with the increased demand for diagnostic services highlight the need for improved methods of providing training and continuing education for graduate students and professionals who work with young children. Families can no longer rely entirely on the resources of specialty clinics for people with autism for direct services. Instead, all professionals involved in the health care or education of young children need to be prepared to address the needs of children with autism (Filipek et al., 1999). One key group of professionals confronted by this issue are licensed psychologists involved in the provision of services to preschool age children as mandated by P. L. 99-457 (Marcus et al., 2001). The provision of diagnostic services to children is a central function of school and clinical psychologists, and competent provision of such services requires a thorough knowledge of and exposure to the full range of developmental and behavioral difficulties that affect children (Kamphaus, Reynolds, & Imperato-McCammon, 1999; Lambert, 1990). National attention has been focused on the need to increase the number of well-trained psychologists able to address the needs of children with severe and persistent mental health and developmental problems (Wohlford, 1990). Wolhford (1990), in describing nationally-based efforts to improve psychological services to children, notes the need for improving and increasing training at all levels and stages, including faculty and curriculum development; academic training from the undergraduate level through doctoral coursework and research; practica, predoctoral internships, and postdoctoral fellowships; and retraining and continuing education. Training of psychology graduate students in general is lengthy, and the availability of specific training in the diagnosis and assessment of young children with autism varies depending on the resources of the graduate program or internship and the perception of the need for services from different provider groups and programs within psychology. Even in areas where specialty autism clinics are available, training before the internship year often does not include direct experience in working with children with autism.

One example of a training program for psychology interns and postdoctoral fellows is that provided by the TEACCH program (Treatment and Education of Autistic and related Communication-handicapped Children) in the Department of Psychiatry at the University of North Carolina School of Medicine (Marcus, 1990). This is an intensive, yearlong experience that is limited to a few interns per year. The TEACCH program also provides more limited training programs to other students and professionals through practicum experiences at the site and continuing education workshops. The latter includes two- and five-day workshops in the diagnostic and psychoeducational assessment of autism targeting licensed psychologists, school psychologists, physicians, educational diagnosticians, teachers, and other professionals who assess individuals with autism (Training Opportunities, Division TEACCH). While the TEACCH training program is comprehensive, students in many graduate programs do not have access to such experiences. This results in a variance in quality of training between different programs, with many new practitioners having limited exposure to children with autism before beginning to provide services in a clinical setting.

TEACCH faculty are also involved in the formal graduate school education of psychologists. For example, students in the School Psychology graduate program of the University of North Carolina at Chapel Hill (UNC-CH) are required to take a psychoeducational assessment class that uses a textbook that includes a chapter on psychological assessment of children with autism co-authored by a TEACCH faculty member (Marcus et al., 2001). One session of the class is presented by the TEACCH faculty member and includes an overview of the basic characteristics of autism, a review of basic assessment tools used at TEACCH with video examples, a discussion about the role of the school psychologist on an autism team, and presentation of a clinical case. In other psychology graduate programs, students may only review DSM-IV criteria of autism before being exposed to the diagnostic process in a clinic setting.

The problem of adequately addressing the needs of children with autism and their families has become a priority for public and private organizations across the country. Autism spectrum disorders are more common in children than cancer, diabetes, spina bifida, and Down syndrome (Filipek et al., 1999). Early diagnosis is a critical factor in ameliorating the affects of autism on children’s social and communicative functioning (National Resource Council, 2001). The recent discovery of the relatively high prevalence of this developmental disorder has accentuated the demand for diagnostic services and consequently the need for increased access to quality training on this topic in the graduate and continuing education of professionals working with young children. Given the range of experiences of psychology graduate students before, during and after internship, research is needed to determine the most effective methods for training students and professionals to diagnose autism and to validate ways to increase access to training.

References

American Academy of Pediatrics, Committee on Children with Disabilities (2001). The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107, 1221-1226.

American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, D.C.: American Psychiatric Association.

Croen, L. A., Grether, J. K., Hoogstrate, J., & Selvin, S. (1997). The changing prevalence of autism in California. Journal of Autism and Developmental Disorders, 32, 207-215.

Filipek, P. A., Accardo, P. J., Baranek, G. T., Cook, E. H., Dawson, G., Gordon, B., Gravel, J. S., Johnson, C. P., Kallen, R. J., Levy, S. E., Minshew, N. J., Prizant, B. M., Rapin, I., Rogers, S. J., Stone, W. L., Teplin, S., Tuchman, R. F., & Volkmar, F. R. (1999). The screening and diagnosis of autism spectrum disorders. Journal of Autism and Developmental Disorders, 29, 439-484.

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Marcus, L. M., Flagler, S., & Robinson, S. (2001). Psychological assessment of children with autism. In R. J. Simeonsson & S. L. Rosenthal (Eds.), Psychological and developmental assessment: children with disabilities and chronic conditions (pp. 267-291). New York: Guilford Press.

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Stone, W. L., Lee, E. B., Ashford, L., Brissie, J., Hepburn, S. L., Coonrod, E. E., & Weiss, B. H. (1999). Can autism be diagnosed accurately in children under 3 years? Journal of Child Psychology and Psychiatry, 40, 219-226.

Training Opportunities, Division TEACCH.(n.d.). Retrieved January 20, 2002, from http://www.teacch.com

Wohlford, P. (1990). National responsibilities to improve training for psychological services for children, youth, and families in the 1990s. In P. R. Magrab & P. Wohlford (Eds.), Improving psychological services for children and adolescents with severe mental disorders: clinical training in psychology (pp. 11-34). Washington, D.C.: American Psychological Association.

Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289, 49-55.