Commentary on providing services to students with autism spectrum disorders.
Autism (Care and treatment)
Child health services (Services)
Child health services (Social aspects)
|Publication:||Name: Journal of Visual Impairment & Blindness Publisher: American Foundation for the Blind Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2011 American Foundation for the Blind ISSN: 0145-482X|
|Issue:||Date: June, 2011 Source Volume: 105 Source Issue: 6|
|Topic:||Event Code: 290 Public affairs; 360 Services information|
|Product:||Product Code: 8000187 Maternal & Child Health Care; 9105264 Maternal & Child Health Programs NAICS Code: 621999 All Other Miscellaneous Ambulatory Health Care Services; 92312 Administration of Public Health Programs SIC Code: 8099 Health and allied services, not elsewhere classified|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
The reported prevalence of ASDs in the United States as well as in other developed countries has increased dramatically in the last few years. This increase is likely the outcome of several factors: greater awareness of ASDs on the part of both parents and professionals, leading to earlier identification; changes in definitions related to ASDs (the wider use of the diagnostic category of Asperger's syndrome, for example); and perhaps an increase in environmental triggers of ASDs in genetically susceptible infants. At present, the best data on the prevalence of ASDs point to a rate of in 1 per 110 children, and a substantially higher rate in males.
ASDs are defined behaviorally. There is no biological marker that points to a diagnosis of autism, and, as is well known in the medical field, the same symptoms can indicate various underlying conditions. About 10 percent of children diagnosed with ASDs have known medical conditions or disabilities such as Fragile X syndrome, but no such association has been identified in the other 90 percent of cases. The best current thinking is that there may be multiple genetic mutations contributing to susceptibility for ASDs. Although the pace of research into the causes of ASDs was very limited for many years, increased research funding to the National Institutes of Health, along with private funds, have substantially accelerated research opportunities.
EARLY IDENTIFICATION AND EARLY INTERVENTION SERVICES
A decrease in the age of identification of children at high risk for developing ASDs has occurred during the last few years as information about early warning signs or "red flags" for autism has been disseminated widely, and screening tools designed to identify ASDs in toddlers aged between 18 and 24 months have achieved wider use. Recent research appears to indicate that many children who are later diagnosed with autism can be identified by 12 months of age (Ozonoff, Losif, Baguio, Cook, Hill, Hutman et al., 2010). Researchers are also working on tools to identify infants aged between 12 and 15 months who are at high risk for developing ASDs. At present the mean age for diagnosis of ASDs is about 4 years, but that mean age is likely to decrease as a highly regarded evaluation tool, the Autism Diagnostic Observation Schedule (ASDOS), becomes available in a version designed for use with toddlers (publication is expected in 2012), and as other new diagnostic tools for use with toddlers at risk for ASDs gain broad acceptance. Because there is impressive evidence that early intervention is associated with better outcomes for infants and toddlers with ASDs (Bruder, 2010; Dawson, 2008), the importance of the development of such tools is clear.
The Individuals with Disabilities Education Act (IDEA) Part C serves infants and toddlers with developmental delays from birth to age 3. Earlier identification of infants at high risk of developing ASDs and increased diagnostic evaluations of 2-year-olds at high risk should be accompanied by an expansion in the number of children receiving early intervention services. Such services are provided through each U.S. state, and there is great variation in the intensity of services delivered--some states provide such limited amounts of service time as to raise serious doubts about the effectiveness of those services. Moreover, with the budgetary strain that most states are currently experiencing, expansion of service intensity is very unlikely to occur in the foreseeable future, even though parents are already increasingly accessing private insurance and Medicaid waivers to help obtain adequate appropriate early intervention services for their children.
When the topic of effectiveness of intervention arises, so too does a question about the availability of research-supported models for serving infants and young toddlers with ASDs. Until recently few such models existed. One of those models is the Early Start Denver Model for Young Children with Autism (Rogers & Dawson, 2010), a comprehensive model that incorporates behavioral principles within a developmental framework focused on social interaction, communication, and relationships. Children in that program made significantly more progress in language and adaptive behavior than did children in the control group (Dawson et al., 2010). Other research-based models for use with infants and young toddlers have a narrower focus, for example, a focus on developing joint attention (Kasari, Gulsrud, Wong, Kwon, & Locke, 2010).
INTERVENTION THROUGH DIFFERENT LENSES
The 1990s were often marked by acrimonious disputes between practitioners with different approaches, particularly those who were de voted to discrete trial training as a core intervention strategy in applied behavior analysis programs (see, for example the work of Ivar Lovaas) and advocates of other approaches such as Floortime, a developmental, relationship-based approach developed by Stanley Greenspan, and TEACCH, a long-established structured teaching approach (Greenspan & Wieder, 1998, 1999; Lovaas, 1987, 2003; Marcus, Schopler, & Lord, 2001; Mesibov, Shea, & Schopler, 2004). Applied behavior analysis (ABA) is an approach to intervention derived from operant conditioning that involves observation, measurement, recording, and analysis of data on behavioral deficits and excesses, followed by manipulation of conditions that are likely to lead to change in the desired direction. Discrete trial training, also referred to as discrete trial teaching, is a procedure used within the ABA approach to teach specific skills. It consists of a directive/ instruction from the trainer, a behavioral response from the student, and a consequence. The consequence may be positive reinforcement for a correct response or corrective action for an incorrect response. The disputes over these different approaches have decreased substantially as the field of applied behavior analysis has distanced itself from virtually total reliance on discrete trial training and has incorporated more naturalistic strategies; as positive behavior support, an approach that has its roots in applied behavior analysis, has gained wide acceptance in the field of education in general and autism in particular; and as the principles of applied behavior analysis and practices from developmental approaches have begun to be used in tandem.
The field of intervention for children with ASDs has begun to move into productive maturity. However, productive maturity does not mean having all the needed answers. At the present time about 50 percent of the young children with ASDs who receive good early intervention or preschool services achieve very good outcomes. We need to do much more to help the other 50 percent who make less progress and continue to have substantial impairments in communication and social relatedness, along with impeding repetitive, stereotyped behavior. We also need to figure out how better to match particular intervention approaches and strategies to the individual children and families most likely to benefit from them.
Everything in education today is expected to be "evidence-based," but there is still no general agreement about what that means--what is considered evidence-based by some professionals is not accepted by other professionals to be so. Research studies using randomized controlled trials are considered the "gold standard" for establishing evidence-based practice, but very few practices in the field of autism have been established through that route. A case in point is the widespread use of "Social Stories" (Gray, 2010) for children and adolescents with ASDs, although that strategy is still not considered evidence-based by some professionals after many years of use and positive reports by teachers and others of its effectiveness with individual students. A "Social Story" is a form of social narrative that meets specific criteria delineated by its developer, Carol Gray. Its goal is to share accurate information about situations or concepts in meaningful and supportive ways so as to improve understanding of expectations and events. Such improved understanding sometimes or often leads to improvement in behavior.
A brief list of the intervention strategies that are widely considered evidence based would include many practices from the approaches of applied behavior analysis, positive behavior support, and pivotal response teaching (Crimmins, Farrell, Smith, & Bailey, 2007; Koegel & Koegel, 2006; Odom, Ceollet-Klingenber, Rogers, & Hatton, 2010).
The latter two approaches are naturalistic, functional, and positive offshoots of applied behavior analysis. Specific strategies would include the following, some of which would have to be adapted for use with visually impaired and blind students:
* visual supports, including daily schedules and video modeling
* many opportunities for the child to make choices throughout the day
* priming, a way of preparing a student or students for upcoming learning experiences or situations through such means as previewing materials or procedures under relaxed conditions. It can be particularly useful with children who are anxious or for whom learning in a group setting is challenging.
* peer supports
* discrete trial teaching
* positive reinforcement systems and such components of positive behavior support as "catch children being good," and "tell children what to do rather than what not to do"
* functional behavior analysis, behavior support plans, and functional communication training
* relaxation training
There is widespread agreement in the literature that the impairment in social interaction and relationships, a core characteristic of ASD, is very difficult to eliminate. In some high-functioning students with ASDs, it is the predominant characteristic of their autism. Although social skills intervention programs have reported improvement in this area, the degree of change is usually either small or moderate and often doesn't generalize to different situations. Moreover, some high-functioning adults with ASDs are now communicating that this is who they are; they are different and they should be accepted as such. "A huge mistake many teachers and parents make is to try to make people with autism or Asperger's into something they are not.... that just won't work" (Grandin, 2008, p. 138).
RESPONSE TO INTERVENTION
One of the newer concepts being adapted for use in programs for children with ASDs is response to intervention, an idea that has been sweeping the education literature for the last few years (VanDerHeyden & Burns, 2010). Originally designed to support students in general education, it is bringing the idea of different tiers of intervention to programs for students with ASDs. As such, it has the potential to assist students who are struggling with grade level learning expectations and decrease referrals to special education with more restrictive placements. A three-tier response to intervention model might include in Tier 1 those academic and behavioral strategies used with all children in a class, whether an inclusion class or a special education class, as Tier 1 strategies are appropriate for typically developing children as well as children with ASDs. Tier 2 might include more frequent and individualized use of some of those strategies. Tier 3 would include intense individualized intervention using additional intervention strategies. Although response to intervention has potential for helping educators make good decisions about intervention for students with ASDs, and there are early reports of the usefulness of this concept in programs for young children with ASDs, there is not yet a sufficient data base to judge its effectiveness in serving a wider range of students with ASDs and the varied programs serving them.
TRANSITION TO ADULT EWE
For many years the field of autism focused on intervention with young children. The progress that many young children made in early intervention and preschool programs encouraged this approach, many parents of young children were highly motivated to advocate strongly for a cure for autism, and many professionals felt that developing strategies for helping young children with ASDs was the most auspicious way of producing major improvements. But, as everyone knows, young children grow up and the concept of "cure" applies to only a tiny percentage of children with ASDs. Some problems are not overcome, some new ones appear in adolescence, and adulthood brings higher expectations and new challenges. Somewhat belatedly, the field of autism has begun to address these issues in adults with ASDs, but it has to do so with fewer resources and a smaller degree of understanding and empathy from the general population.
Lack of friends and social support networks outside the immediate family are common in relation to young adults with ASDs, and job opportunities are often limited and unstable. Many high-functioning adults with ASDs, some of them college graduates and some with computer skills, spend their days alone at home, unable to obtain or retain jobs. Educational programs for adolescents with ASDs need to develop better ways to prepare their students for work in the community and start their students off on community work experiences tailored to their individual abilities. This will increase the likelihood that these students will be able to retain those jobs when they shift to adult services or obtain comparable jobs. State agencies need to recognize that even high-functioning young adults with ASDs often need ongoing job support.
Bruder, M. B. (2010). Early childhood intervention: A promise to children and families for their future. Exceptional Children, 76 (3), 339-355.
Crimmins, D., Farrell, A. F., Smith, P. W., & Bailey, A. (2007). Positive strategies for students with behavior problems. Baltimore: Brookes.
Dawson, G. (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder. Development and Psychopathology, 20, 775-803.
Dawson, G., Rogers, S. J., Munson, J., Smith, M., Winter, J., Greenson, J., ... Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e17-e23.
Grandin, T. (2008). The way I see it: A personal look at autism & asperger's. Arlington, TX: Future Horizons.
Gray, C. (2010). The new social story[TM] book: Revised and expanded 10th anniversary edition. Arlington, TX: Future Horizons.
Greenspan, S. I., & Wieder, S. (1998). The child with special needs: Encouraging intellectual and emotional growth. Reading, MA: Addison-Wesley.
Greenspan, S. I., & Wieder, S. (1999). A functional developmental approach to autism spectrum disorders. Journal of the Association for Persons with Severe Handicaps, 24 (3), 147-161.
Kasari, C., Gulsrud, A. C., Wong, C., Kwon, S., & Locke, J. (2010). Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40, 1045-1056.
Koegel, R. L., & Koegel, L. K. (2006). Pivotal response treatments for autism: Communication, Social, & academic development. Baltimore: Brookes.
Lovaas, O. I. (2003). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed.
Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functional in young autistic children. Journal of Consulting and Clinical Psychology, 55 (1), 3-9.
Marcus, L., Schopler, E., & Lord, C. (2001). TEACCH services for preschool children. In J. S. Handleman & S. Harris (Eds.). Preschool education programs for children with autism, 2nd ed., (215-232). Austin, TX: Pro-Ed.
Mesibov, G. B., Shea, V., & Schopler, E. (2004). The TEACCH approach to autism spectrum disorders. New York: Springer.
Odom, S. L., Collet-Klingenberg, L., Rogers, S. J., & Hatton, D. D. (2010). Evidence-based practices in interventions for children and youth with autism spectrum disorders. Preventing School Failure, 54 (4), 275-282.
Ozonoff, S., Losif, A. M., Baguio, F., Cook, I. C., Hill, M. M., Hutman, T., Rogers S. J., Rozga, A., Sangha, S., Sigman, M., Steinfeld, M. B., & Young, G. S. (2010). A prospective study of the emergence of early behavioral signs of autism. Journal of the Academy of Child and Adolescent Psychiatry, 49(3), 256-266.
Rogers, S. J., & Dawson, G. (2010). Early Start Denver Model for young children with autism: Promoting language, learning, and engagement. New York: Guilford Press.
VanDerHeyden, A. M., & Burns, M. K. (2010). Essentials of response to intervention. Hoboken, NJ: Wiley.
Author's note: When I was invited to write commentary on the topic of autism spectrum disorders (ASDs) for this journal, I hesitated. I have had extensive experience in the field of autism, but it has not include experiences with children who have the dual disabilities of ASD and visual impairment or blindness (ASDVI). Only after learning that commentary by a blindness-specific author would be appearing in the same issue, and that my commentary was expected to reflect on the broad field of services to children with ASDs, did l feel able to accept the invitation to write for JVIB. I have, therefore, tailored my comments to reflect the general field of autism intervention.
Shirley Cohen, Ph.D., professor emeritus, Department of Special Education, 9th Floor West, Hunter College, City University of New York, 695 Park Avenue, New York, NY 10065; e-mail:
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