Assessing and Treating Autism Spectrum Disorders
Autism spectrum disorders (ASDs) are neurodevelopmental disorders often characterized by significant developmental delays in language and communication skills, abnormalities in language when it does develop, significant impairment in reciprocal social behavior, a restricted and narrow repertoire of interests and behavior, ritualized and repetitive behavior patterns, and stereotyped, often socially disruptive behavior problems. Diagnosing an ASD is not a straightforward process. No single biological marker or laboratory test or procedure exists to identify children with an ASD. Although the diagnosis is primarily a behavioral one based upon a comprehensive history, direct observation, and standardized assessment, any psychologist conducting an assessment of a child suspected of meeting criteria for an ASD should also recommend that the child’s family or caregivers seek medical evaluation to rule out specific known causes of expressed behaviors as well as formal speech/language, fine, and gross motor evaluation. Medical evaluation has been discussed in Filipek and colleagues (2000), and the more recent investigation of metabolic and genetic factors in etiology has been discussed in Zecavati and Spence (2009).
(p. 404) Assessing for Autism Spectrum Disorders
• History and current concerns. It is essential to administer a semistructured interview to obtain a comprehensive medical, developmental, and psychosocial history as well as to identify the family’s current concerns. An evaluator should document birth and neonatal history, developmental milestones, and any developmental regression. When obtaining historical information, review communication, social and behavioral development, and current functioning within these three areas. There should be a discussion of the individual’s play and leisure skills, especially noting the presence of any repetitive or restricted aspects of these characteristics as well as the level of adaptive functioning. Inquire about the presence of any of the following problems: self-injury, pica, feeding or sleeping disorders, seizures, excessive irritability, or extreme hyperactivity. Review all available records (e.g., medical, school, previous testing, intervention reports).
• Child observation. Create a context in which to observe the child’s social communication behavior, play, and preferences. These observations should occur during the clinical interview with the family or caregiver and during direct testing. The use of a direct observational instrument, such as the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), is beneficial because it is designed to include multiple opportunities for social interaction and communication that elicit spontaneous behavior in standardized contexts. These conditions permit symptoms of ASD to be noted if they occur. It is considered a “gold standard” method of assessment in both research and clinical practice, and it can be used in clinical settings as long as the examiner has had appropriate training. Similarly, the Childhood Autism Rating Scale-2 (CARS-2) is a structured observation instrument that is used to rate behavior during the evaluation process. The CARS-2 can also be used with parents and teachers to discover whether behaviors observed during assessment were consistent with child’s behavior in other settings. The highly structured conditions associated with testing protocols can suppress patterns of behavior seen in autism during unstructured conditions.
• Direct testing. A comprehensive evaluation will consist of intellectual, language, academic, and adaptive behavior assessment. The level of intellectual functioning is negatively correlated with severity of autistic symptoms. Severe symptoms suppress the child’s ability to acquire skills, to function adaptively, and conversely high intellectual functioning is one of the best predictors, in addition to good language functioning, of positive long-term outcome.
The results of psychometric testing are used to generate a profile of strengths and weaknesses, to facilitate educational planning, to determine eligibility for educational or publicly funded services, and to suggest prognosis. There are several commonly used tests for children with low mental age (e.g., those who are younger, nonverbal, or who have moderate to severe intellectual disability) such as the Leiter International Performance Scales—Revised (Leiter-R), the Differential Abilities Scales-II, the Bayley Scales of Infant Development-III, and the Mullen Scales of Early Learning. Higher functioning children are typically able to complete more standard measures of intellectual functioning (e.g., the Wechsler Intelligence Scales for Children-IV, Stanford-Binet Intelligence Scale-5th edition). Because major cognitive assessment batteries are based on spoken instructions and children with ASD often exhibit poor verbal comprehension, thorough assessment may require administration of a spoken-language-based measure like the Stanford-Binet and the Leiter-R for a complete picture.
There are a variety of instruments to assess language skills, which range from picture vocabulary tests to tests that assess receptive and expressive language abilities. A referral for a comprehensive speech and language evaluation is often helpful to generate specific recommendations for treatment. Children (p. 405) with adequate language abilities may still exhibit deficits in the social use of language. Evaluation of pragmatic communication is warranted to assess nonverbal behaviors, turn taking, and understanding inferences and figurative expressions.
Assessment of academic knowledge is helpful for the purposes of educational decision making. Look for academic strengths that may augment or mask other personal weaknesses. Include appropriate batteries that highlight both academic strengths and weaknesses to interpret the learning patterns they suggest and communicate that information to the family and school with appropriate recommendations. Younger children often show gaps in word knowledge or syntax that render understanding of group instruction in classroom settings difficult and detection of such deficiencies is important. In such cases augmentation of presentations with redundant visual cues, sequenced pictorial instructions, and diagrams should be provided.
Assessment of adaptive functioning should always accompany intellectual testing to determine whether a diagnosis of intellectual disability is merited. Use information gathered from adaptive behavior measures, such as the Vineland Adaptive Behavior Scales-II, to set appropriate treatment goals to further independence in activities of daily living and to determine how much supervision is required during these activities. The pattern most often observed in ASD is lower communication and socialization scores together with higher self-help scores and relatively intact motor skills.
• Parent/teacher rating scales. Use parent and teacher rating scales to assess behavioral characteristics of ASD (e.g., Autism Spectrum Rating Scale, Social Communication Questionnaire, Social Responsiveness Scale) that are present in the home and school environment. Additionally, other measures of more general behavioral and mental health functioning (e.g., Child Behavior Checklist, Behavioral Assessment for Children-2, Aberrant Behavior Checklist, Conners-3, Conners Early Childhood) should be a component of the assessment to aid in comorbid and differential diagnosis. Behavior problems in this population include social avoidance, compulsions, aggression, self-injury, stereotypy, and unusual or strong aversions or preferences for sensory stimulation.
• Additional components. Depending on the referral question, the goal of assessment, and practical constraints, comprehensive evaluation would most likely include an assessment of the family functioning (e.g., parenting stress), the family support network in place, and the evaluation of response to treatment. Once observations, direct testing, and report measures are complete, preliminary evaluation may reveal the need for additional data to answer questions arising during assessment. If no further information is required to complete the planned evaluation, full consideration of the findings and their implications should precede actually meeting with the family to discuss the results. It is helpful to prepare the written report in advance, with the stipulation that alterations or addenda may be required later for clarification or elaboration of points raised during the information-sharing session.
• Conveying results. The initial assessment leading to a diagnosis or classification of the child with an ASD is an anxiety-laden experience. The most important outcome of assessment and its interpretation, interventions in their own right, is the movement of the family and child toward effective ameliorative and preventative interventions and professional services. The practitioner must be familiar enough with the specific assessment tools used and general standards for psychological and educational testing to be able to discuss and explain them frankly, including their practical value and limitations, in everyday language. Candor and truthfulness are essential in presenting results and recommendations. Intended meaning cannot be taken for granted; rather, it must be explored through the use of requests for family reaction or exchange of interpretative views. Technical and diagnostic terms should be introduced and used appropriately, with explanation and qualification insofar as the degree of certainty (p. 406) requires. Predictions that can be supported should be provided. Environmental conditions during the information-sharing session are important. Care should be taken to create a setting conducive to the exchange of complex and emotionally laden ideas. Evidence that the practitioner is busy or preoccupied will not be conducive to understanding and comfort. Discourse is often facilitated by opening the discussion with concrete recollections of events that occurred during the evaluation. Restating the family’s primary concerns solicits their active participation, indicates caring, and conveys the impression that the purpose of the evaluation is to help. Time, however, is limited, so guiding the discussion away from repetition and following a planned format toward a natural summary and a request for feedback from the family. Scheduling follow-up sessions may sometimes be necessary as a result of apparent discomfort or clearly unresolved issues. It is useful to offer alternative sources of information, such as support and advocacy groups, information agencies, books, and credible Web sites.
Treating Autism Spectrum Disorders
Historically ASDs have been a difficult set of disorders to treat. Children with ASD often function within the impaired range of general intellectual ability, failing to benefit from conventional social and educational therapy. Once a child has been diagnosed with an ASD, it is imperative to implement effective intervention services. Within the context of this book, it not feasible to delineate in detail the necessary components of comprehensive treatment for an individual with an ASD. Therefore, a series of broad guidelines will be provided. Practitioners should utilize the resources at the end of this section to gain further knowledge in this area.
• Defining desirable outcomes. Operationalizing long-term goals is a good and necessary place to start. These goals should reflect the parent’s desires for his or her child, as well as determining some appropriate societal goals so that the individual’s behavior conforms to some general social expectations. Institutional goals, typically within the context of education, will also be a part of this process. Practitioners must be able to articulate what type of educational setting is appropriate, the type of classroom that would be sufficient to learn and socialize in, and the type of instruction that would be optimal for learning skills. Short-term goals would consist of the child’s readiness for learning, and specific cognitive and academic skills to acquire. Other factors such as practical life and work skill goals as well as behavior management gains should also be considered.
• Early intensive behavioral intervention (EIBI). An early intensive behavioral intervention (EIBI) program will greatly improve the outlook for most young children with autism by targeting the core behavioral deficits and excesses with individualized strategies. This comprehensive intervention, using the principles of applied behavior analysis (ABA), has become the standard psychological and educational treatment for children with ASDs. When delivered early, during the sensitive period for language acquisition and foundational aspects of brain organization from the preschool period up to about 7 or 8 years, recovery of delayed overall learning can occur. Intensive behavioral intervention is gradual, systematic, intensive, and errorless. An intensity of 25–40 hours per week of treatment is typically provided for at least 2 years. It involves one-on-one work with a therapist, addresses a broad range of skills, including cognitive (e.g., generalized imitation, discrimination, matching), language, adaptive behavior, and motor skills. Individualized instruction maintains attending and performance via immediacy, minimizes practicing errors, and can shape behavior via successive approximation. The goal is to maximize the intensity of instruction (i.e., the number of hours/days of treatment) to achieve an efficient accelerated rate (p. 407) of acquisition and to displace the practice of autistic behavior. Competent clinicians will use a well-sequenced hierarchical curriculum to target behavioral deficits and symptomatic excesses. A well-developed program will address the following in the behavioral treatment of children with an ASD: the lack of responsiveness to people, the severe language impairment, the resistance to change, extreme inattention, little or no appropriate play, unusual reactions to normal environmental stimulation, self-stimulation, and uneven development.
• Treating high-functioning autism/Asperger’s disorder. For children with this type of ASD profile, intensive behavioral intervention is typically not required. Children with HFA or Asperger’s disorder would most likely benefit from classroom and school-based interventions that address the social and behavioral aspects of impairment. Targeted academic intervention focusing on time management skills, organization of materials, planning for short and long-term assignments, and any academic weaknesses (i.e., identified learning disability, difficulty with more abstract conceptual learning) should be components of treatment. Other aspects of intervention include social skill development, anger management, friendship finding, and counseling to address feelings of anxiety and/or depression, which are commonly comorbid in this population.
• Parent training. Remediation of language and social skill deficits must be maintained in the everyday environment if they are ever to become fluent and internalized. Parent or caregiver training in the basics of behavior change technology has become an essential component of the long-term success of treatment. Parents with a good understanding of the behavior principles such as reinforcement/punishment, extinction, motivating operations, errorless learning, prompting, shaping, chaining, and task analysis will be better equipped to intervene with their child. Modeling and coaching of techniques is essential when working with parents. Teaching parents the value of data collection during training, such as collecting antecedent-behavior-consequence (ABC) data, collecting discrete trial data, and completing a task analysis are all helpful. Parent-delivered interventions can enhance generalization of skills, efficiency of delivery, and increase self-efficacy.
• Psychopharmacology. There are no pharmacologic treatments for the core symptoms of autism spectrum disorders. Psychopharmacologic intervention is, however, useful in the amelioration of some commonly associated conditions. These conditions include irritability for which some of the atypical neuroleptics may be helpful, and impaired attention and concentration for which the psychostimulants may be helpful. Some of the serotonin reuptake inhibitors may sometimes be helpful for social anxiety or compulsions, and a number of drugs helpful for mood stabilization have also been proposed as useful.
• Fad treatments. All too often families become prey to purveyors of treatment fads, outright frauds, and unsubstantiated remedies. In general, any treatment promising quick, effortless, or unconventional approaches should be treated with skepticism. Long-standing behavioral characteristics are best remediated through the acquisition of new and more effective ways of behaving, and this is most directly achieved through behavior analytic interventions. Behavior changes in real time and as a result of systematic effort. It is the practitioner’s responsibility to have sufficient awareness of the process of science and to assist the families in understanding what constitutes evidence-based treatment. Kay and Vyse (2005) suggest if talking and education are not enough to dissuade families from using unsupported treatments, a practitioner may suggest the family collect data to determine the value of the alternative treatment for their own child. If presented properly, the proposition of an empirical test can diffuse conflict and provide a shared goal for both the family and the practitioner.
References and Readings
Association for Science in Autism Treatment. (n.d.). Retrieved January 2013, from www.asatonline.org
Cambridge Center for Behavioral Studies. (n.d.). Autism and ABA. Retrieved from, www.behavior.org/autism/
Chawarska, K., Klin, A., & Volkmar, F. R. (2008). Autism spectrum disorders in infants and toddlers: Diagnosis, assessment, and treatment. New York: Guilford Press.Find this resource:
Eldevik, S., Hastings, R. P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Meta-Analysis of early intensive behavioral intervention for children with autism. Journal of Clinical and Adolescent Psychiatry, 38(3), 439–450.Find this resource:
Filipek, P. A., Accardo, P. J., Ashwal, S., Baranek, G. T., Cook, E. H., Jr., Dawson, G., … Volkmar, F. R. (2000). Practice parameters: 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.Find this resource:
Goldstein S., Naglieri, J. A., & Ozonoff, S. (Eds.). (2009). Assessment of autism spectrum disorders. New York: Guilford Press.Find this resource:
Kay, S., & Vyse, S. (2005). Helping parents separate the wheat from the chaff: Putting autism treatments to the test. In J. Jacobson, R. M. Foxx, & J. A. & Mulick, (Eds.), Controversial therapies for developmental disabilities: Fad, fashion, and science in professional practice (pp. 265–277). New York: Erlbaum.Find this resource:
Mayville, E.A., & Mulick, J. A. (Eds.). (2011). Behavioral foundations of effective autism treatment. Cornwall-on-Hudson, NY: Sloan.Find this resource:
Organization for Autism Research. (2010). Retrieved January 2013, from www.researchautism.org//index.asp
Zecavati, N., & Spence, S. (2009). Neurometabolic disorders and dysfunction in autism spectrum disorders. Current Neurology and Neuroscience Reports, 9, 129–136.Find this resource:
Chapter 85, “Principles of Treatment with the Behaviorally Disordered Child”