Early Childhood Education

Autism

 

In 1943, Dr. Leo Kanner of the Johns Hopkins Hospital first described the syndrome of early infantile autism. His diagnostic criteria were based on a child’s inability to relate to others, a characteristic that he described as “extreme aloneness.” In the 1960s this disability was thought to have a low incidence. In 2006, the Research Institute and the Centers for Disease Control and Prevention estimate that 1 in 166 children is diagnosed with a form of autism, a ratio that no longer qualifies as a “low incidence.” Although much research is being conducted, the cause of this increase, or even the extent to which the increase in numbers diagnosed represents an actual increase, is not yet known. Autism occurs in all racial, ethnic and socioeconomic groups. Again for unknown reasons, three to four times as many boys as girls are diagnosed.

Since 1952, physicians and psychologists have used the The Diagnostic and Statistics Manual of Mental Disorders (DSM) for identifying disorders, including autism, and differentiating one from another. This manual, published by the American Psychiatric Association, is revised frequently. The current edition, (DSM-IV-TR), lists the condition of Pervasive Developmental Disorder as an umbrella term under which are included Autistic Disorder, Childhood Disintegrative Disorder, Asperger Disorder, Retts Disorder, and Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS). In 1994 the organization Zero to Three, the National Center for Infants Toddlers and Families, created the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood to identify and differentiate disorders as they are seen in children from birth through three years of age. A revised edition (DC:0-3R) was released in 2005.

The authors of this book describe Multisystem Developmental Disorder as a disorder of relating and communication resulting from biologically based differences in a variety of interconnected systems including sensory modulation, sensory integration, and motor planning. They liken it to Pervasive Developmental Disorder. The notion of a spectrum of disorders was first described in the early 1980s by Lorna Wing who wrote about a range of related disorders from autism to Asperger. The term Autistic Spectrum Disorders (ASD) is now coming into wide use to clarify that the term autism is not one condition.

At the beginning of this century the United States Office of Special Education Programs requested that the National Research Council of the National Academy of Science undertake a study of what is known about autism relevant to children from birth to eight. The findings are published in a book entitled Educating Children with Autism (Lord and McGee, 2001). Echoing the foregoing, the authors write, “The manifestations of autism vary considerably across children and within individual children over time. There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism, even though there are strong and consistent commonalities, especially relative to social deficit.”

There is agreement that the core deficits of this spectrum of disorders, when seen in early childhood, include significant impairments in the areas of socialization, communication, and behavior. Some signs and symptoms associated with this spectrum at this age include but are not limited to the following:

• Lack of joint regard or shared attention.

• Impairment in gestural (e.g., pointing) and reciprocal communication.

• Lack of imitative, functional, and pretend play that is appropriate to developmental age.

• Difficulty regulating emotions.

In some children hints of future problems are evident early in infancy but for most children problems with communication and social engagement become evident as the child’s skills begin to lag behind other children of the same age. Some children begin to develop normally and then between 18 and 24 months lose language and social skills they had previously acquired. There are other problems that frequently accompany ASD. It is estimated that one in four children with ASD will develop seizures starting in early childhood or adolescence. Sensory problems, including difficulties perceiving and integrating information through the senses, are also common and may explain many of the repetitive or stereotyped behaviors such as hand flapping and rocking.

Theories about the etiology of this complex disability include the influences of genetics, infectious disease, prenatal and postnatal trauma, immune system deficiencies, and metabolic disorders. Recent studies suggest that for families with one child with autism the risk of having another child with autism is as high as 1 in 20 or 5 percent. Although there is general agreement that this is a biologically based disorder, there are currently no biological markers or “tests” that detect autism. Its diagnosis is based upon parental report and the observations of clinicians. There are tools that are used with these observations, for example, the Childhood Autism Rating Scales (CARS) by Schopler et al. and the Modified Checklist for Autism in Toddlers (M-CHAT) by Robins et al. (2001). The items on the latter scale that are most significant in differentially identifying autism in children over 24 months include lack of the following:

• Interest in other children.

• Use of index finger to point in order to indicate interest in something.

• Showing parent or caregiver an object.

• Imitating a familiar adult’s expressions and/or actions.

• Responding to his/her name when called.

• Visually following another’s point gesture to an object.

Clinicians may also use the Autism Diagnostic Observation Schedule—Generic (ADOS-G) (Lord et al., 2000), a semistructured play-based tool to determine whether a child meets the criteria for autism in the communication, social interaction, and imaginative play domains. No tool should be used in isolation, however, and a diagnosis of autism should be made only as part of a comprehensive assessment.

The early belief that autism was caused by cold or aloof parenting has been discredited. However, because this disorder can affect a child’s ability to communicate, form relationships with others and respond appropriately to the external world, it can be disruptive to attachment patterns between children and their primary caregivers. Therefore, seeing families as the primary interveners and professionals as their allies is essential in promoting growth and development in their children. Providers of service to these families should be sensitive to the difficulties parents experience in diagnosing and treating these children. These parents see what looks to be typical development over the first months and even years of life. They also experience a lack of relatedness on the part of the child that affects how they feel as a parent. Although these features may also be true of some other developmental conditions, the predominance of highly intensive interventions and the perception that if the condition is not treated early it will not be ameliorated add additional stresses in the lives of these parents.

Studies have shown that early detection and intervention can have significant effects on the progress and functioning level of children. A wide range of approaches to intervention is currently available. Some focus specifically on and work through the physiology of the disorder (e.g., dietary and pharmacological), others the behavioral manifestations (e.g., applied behavioral analysis), and still others a combination of the biological, psychological, and social elements (e.g., developmental, individual differences, relationship-based approach). While there are several methodologies currently in use, “there are virtually no data on the relative merits of one model over another” (National Research Council, 2001, p. 171), nor is there any apparent association between any particular current intervention and recovery from autism” (p. 43).

Among model comprehensive programs for young children there is, however, agreement about the components of successful intervention (Hurth et al., 1999; National Research Council, 2001).

• Intensity of engagement: Engagement refers to sustained attention to and participation with a person or a developmentally appropriate activity.

• Individualization of services for children and families: Profile of services, outcomes, settings, measurement of progress should be tailored to individual child and family.

• Family involvement: Family is given support in accommodating their child’s needs in everyday situations.

• Systematic, planful teaching: Planning includes assurance of developmentally appropriate, functional interventions that have a coherent theoretical basis.

• Specialized curriculum: Curriculum addresses the core deficits of ASD such as communication, social/emotional interaction, play, and problem solving.

• Objective measurements of progress: Objective, observable and anecdotal measurements are used to determine whether a child is benefiting from intervention.

• Opportunities for inclusion with typically developing peers in natural environments: Appropriate supports are provided in home and community settings to promote fully inclusive experiences among peers.

• Earliest possible start to intervention.

In the United States current federal legislation such as Individuals with Disabilities Education Act (IDEA) supports early childhood special education services for children with autism and other developmental disabilities. The youngest children, defined in each state as either birth through three or birth through five, receive early intervention through the state departments of education, health, or human services. These services are provided in inclusive environments that are natural to the child, for example, home, child care, and community settings. While some services are at public expense (e.g., evaluation, development of an Individual Family Service Plan), families participate in paying for some services. Services for older children are provided by the state department of education in the “least restrictive” school environment that can provide a free and appropriate public education.

Although ASD is currently viewed as not yet curable, there is treatment available. As there are many treatment options available, there are just as many outcomes. It is important to receive the correct diagnosis. The degree of success of any treatment program will depend on accurate diagnosis, the characteristics of the child, and the extent to which treatment is individualized and based on the child’s unique profile. Given these supports and our increasing knowledge, it is reasonable to look to the future with positive expectations. See also Inclusion.

Further Readings: Bilken, D. (2005). Autism and the myth of the person alone. New York: New York University Press; Greenspan, S. I., G. Degangi, and S. Wieder (2001). The Functional Emotional Assessment Scale (FEAS) for infancy and early childhood: Clinical and research applications. Bethesda, MD: Interdisciplinary Council on Developmental and Learning Disorders; Hurth, J., E. Shaw, S. Izeman, K. Whaley, and S. J. Rogers (1999). Areas of agreement about effective practices among programs serving young children with autism spectrum disorders. Infants and Young Children, 12(2), 17-26. Lord, C., and J. McGee, eds. (2001). Educating children with autism. Washington, DC: National Academy Press; Lord, C., S. Risi, L. Lambrecht, E. H. Cook, B. L. Leventhal, P. C. DiLavore, A. Pickles, and M. Rutter (2000). The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders 30, 205-233; National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. Catherine Lord and James P. McGee, eds. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press; Robins, D., D. Fein, M. Barton, and J. Green (2001). The Modified Checklist for Autism in Toddlers (M-CHAT): An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders 31, 131-144; Shopler E., R. J. Reichler, R. F. DeVellis, and K. Daly (1980). Toward objective classifications of childhood autism: Childhood Autism Rating Scale (CARS). Journal of Autism and Developmental Disorders 10, 91-103; Wiseman, N. D. (2006). Could it be autism? New York: Broadway Books; ZERO TO THREE (2005). Diagnostic classification of mental health and developmental disorders of infancy and early childhood: Revised edition (DC:0-3R). Washington, DC: ZERO TO THREE Press.

Antoinette Spiotta, Corinne G. Catalano, and Sue Fernandez