Educating Children with Autism

1. Educating Children with Autism Committee on Educational Interventions for Children with Autism Division of Behavioral and Social Sciences and Education National Research Council 2001 Summary by Carol Burmeister - Desert Mountain SELPA and Andrea Walker - Orange County Department of Education Copyright-O.C. Depart. of Ed.-SUCSESS Project & So. Cal. Autism Training Collaborative-SCATC

2. Committee’s Charge • Committee on Educational Interventions for Children with Autism was formed at request of U.S. Department of Education’s Office of Special Education Programs • Integrate scientific, theoretical, and policy literature • Create framework for evaluating scientific evidence concerning effects and features of educational interventions

3. Primary Focus Early intervention, preschool, and school programs designed for children with autism from birth to age 8

4. Content areas • I. Goals for Children with ASD and Their Families • Diagnosis, Assessment, and Prevalence • Role of Families • Goals for Educational Services • II. Characteristics of Effective Interventions • Communication, Social, Cognitive, and Sensory and Motor Development; Adaptive Behaviors, Problem Behaviors, Instructional Strategies and Comprehensive Programs • III. Policy, Legal and Research Context • Public Policies and Legal Issues • Personnel Preparation • Methodological Issues in Research • Conclusions and Recommendations

5. Diagnosis, Assessment, and Prevalence • The most important consideration in devising educational programs have to do with recognition of the ASD as a whole, with the concomitant implications for social, communicative, and behavioral development and learning. • Recommends that children with any ASD, regardless of severity or function, be eligible for special education services • Ten + years ago, autism was typically not diagnosed until children were of public school age • Early identification critical, even as young as age two • Recommends appropriate screening and multidisciplinary assessment with follow-up diagnostics within 1 -2 years after initial evaluation. • Why a much higher incidence?:morecomplete diagnoses, broader definition of autistic spectrum disorders

6. Role of Families • Parents need to have access to balanced information about ASD and the range of appropriate services. • Parents need to have the opportunity to learn techniques for teaching children new skills and reducing behavioral problems. Parents can learn to successfully apply skills to changing their child’s behaviors. • Parents’ concerns and perspectives should actively help shape educational planning.

7. Goals for Educational Services • Goals for educational services are the same as those for typically developing children: Personal independence andsocial responsibility. • These goals imply progress in: • social and cognitive abilities • verbal and nonverbal communication skills and adaptive skills • reduction of behavioral difficulties • generalization of abilities across multiple environments • There is evidence that interventions lead to improvements… yet there does not appear to be a clear, direct relationship between any particular intervention and the amount of progress. • Recommends ongoing measurement of treatment objectives and progress (documented frequently) and adjustments as needed

8. Characteristics of Effective Interventions • Consensus is: • There is a need for early entry into intervention programs • Active engagement in intensive instructional programming 25 hours a week, 12 months a year • Use of planned teaching opportunities that are developmentally appropriate • Sufficient amounts of adult attention to meet individualized goals (1:1 and small group) • Recommends the services begin as soon as a child is suspected of having an ASD. Planned activities in a variety of settings with ongoing interactions with typically developing peers. • Focus on the core deficits of ASD…..

9. Priorities of Focus: - functional academic skills and spontaneous communication - social instruction delivered throughout the day in various settings - teaching of play skills, focusing on play with peers - intervention strategies that address problem behaviors with an emphasis on positive, proactive approaches - instruction aimed at goals for cognitive development, carried out in the context in which the skills are expected to be used, with generalization and maintenance in natural contexts as important as acquisition of new skills

10. Public Policies • IDEA contains the necessary provisions yet the implementation involves many disciplines and agencies. Confuses lines of responsibility... • Recommends the coordination across services and funding at federal and state levels. Creation of a federal joint agency task-force on ASD. State monitoring of coordination among service delivery systems. Establish minimum standards for personnel.

11. Personnel Preparation • Remains one of the weakest elements of effective programming for children with ASD • Understanding of the range and depth of the problems in all the core deficits, unique needs of each child, various effective strategies available, etc. • Administrative attitudes and support are critical in improving schools (both special and general education) • Recommends agencies to provide personnel preparation resources needed for intensified efforts to build a viable support structure for educating students with ASD

12. Needed Research • Education at home, at school and in community settings remains the primary treatment for children with ASD • Many techniques and comprehensive programs have clear effects on important aspects of learning • Links between interventions and improvements are dependent on characteristics of the children and aspects of the treatment that are not yet fully understood • Recommends the use of longitudinal and other interventions studies that assess the relative effectiveness of the various treatment models, precise measurements of outcomes, educational skills, family variables, child factors and responsiveness to interventions, etc…

13. Key Points of Section I • I. Goals for Children with ASD and Their Families • A. Diagnosis, Assessment, and Prevalence • - 2 stage design = initial screening then systematic assessment • - Reported increase in prevalence (2-5 per 10,000 in 70s to 20 per 10,000 now) • - Broader definition of ASD • - Co-exists with other disabilities • - Range of skills within the various domains • - Limited information from standardized testing instruments • - Need to assess in both structured and unstructured settings • - Medical considerations • - Multidisciplinary teams are needed

14. Key Points continued • B. Role of Families • - Families need specialized knowledge and skills AND scientifically based information • - Need support for the family stresses • - Empowering parents to take a key role in effective treatment = great benefit to child • - Need initial training and ongoing support • - Need to learn techniques to support generalization and maintenance of skills • - Need adaptive skills and behavioral support training • - Learn to be a ‘good advocate’ (effective collaborator) Vs ‘adversarial’ with the ‘team’ • - Adopt a ‘family-centered’ approach • - Be sensitive to cultural issues

15. Key Points continued C. Goals for Educational Services -Must address independence and social responsibility as well as language, cognitive, social, and adaptive goals that are not part of standard curricula - Issues of standards-based educational reform - Objectives must be based on specific behaviors targeted for planned interventions - Educational objectives should be tied to specific, real- life contexts and behaviors with immediate meaning to the child

16. Issue of “recovery” “Whether these improvements reflect developmental trajectories of very mildly affected children or changes in these trajectories in response to treatment (Lovaas, 1987) is NOT known.” “…the core deficits in autism have generally been found to persist in some degree in most persons with ASD. There is no research base explaining how “recovery” might come about or which behaviors might mediate general change in diagnosis or cognitive levels.” “Although there is evidence that interventions lead to improvement and that some children shift specific diagnoses within the spectrum and change in severity of cognitive delays in the preschool years, there is not a simple, direct relationship between any particular current intervention and “recovery” from autism.”

17. Key Points of Section II • II. Characteristics of Effective Interventions • A.Communication • - verbal and nonverbal issues are considered a core deficit • - the severity of communicative impairment = greatest sources of stress for families • - 1/3 to 1/2 of children and adults do not use speech functionally • - impairments in social or pragmatic aspects of language and related cognition are the most salient • - Play skills are impaired • Intervention approaches = different camps • Contemporary Behavioral (ABA)---> Naturalistic ---> Developmental ---> Augmentative and alternative communication (AAC)

18. Key Points continued • B. Social • - Various theoretical frameworks -developmental or behavioral approach • - play skills • - interventions will be based on approaches • - goals for specific social behaviors as they relate to interactions with adults(prelinguistic = e.g., joint attention, turn taking, imitation, responding to gaze, initiation with adults or later skills needed in classroom contexts = e.g., responding to directions, independence, participation in activities, expression of needs, requesting assistance) and with peers(prelinguistic = e.g., joint attention, requesting, commenting, nonverbal responses) • Goals and objectives in this area need to go hand in hand • with communication and language development

19. Key Points continued • C. Cognitive • - ASD affects many aspects of thinking and learning • - deficits, including Mental Retardation, are interwoven with the social and communication difficulties • - can’t assume a typical sequence of learning • - IQ scores- difficult to interpret • less stable in early preschool (below 3) • should not be considered a primary measure of outcomes, yet informative • - various theoretical models - relationship between verbal ability and Theory of Mind; Executive functioning deficits; and central coherence • ,

20. Key Points continued • D. Sensory and Motor Development • - there are fewer empirical studies or rigorous research in this area • - may have early and unusual sensory-perceptual reactions • (response to sounds, atypical interest in • visual stimuli, mannerisms, over excitement, etc.) • - impact on skill acquisition - imitation, muscle tone, postural stability and motor control • - therapies include- sensory integration, auditory integration, vision, music, art therapy, etc… • There is a need to address at least functional aspects of motor difficulties, particularly as they affect social, adaptive and academic functioning.

21. Key Points continued E. Adaptive Behaviors - most interventions are geared to teaching individuals with MR self help skills (toilet training, dressing, eating, grooming, etc.) - sleep and eating disorders are frequently reported - safety and danger issues maybe impaired -goals need to focus on age-appropriate independence in various settings - focus on generalization of skills - results are encouraging regarding teaching a range of adaptive behaviors to young children with ASD

22. Key Points continued F. Problem Behaviors - use of functional behavioral assessment and positive behavioral supports - is the problem from the child’s or adults’ perspective? - the intensity, frequency, duration and/or persistence of the behavior often distinguishes them from peers - neurobiology impact (SI) - reactive Vs proactive interventions - assimilation Vs. accommodations - various approaches - use of medications - implementation of behavior plans

23. Key Points continued G. Instructional Strategies - there is a range of strategies and approaches - one to one Vs. group instruction -use of visual supports - use of peers as ‘instructors’ Research suggests the greatest effects of any direct treatment lie in the generalization of learning …there is little reason to believe that individual therapies carried out infrequently have a unique long-term value….unless taught to and used regularly by the child and the people who are with him or her in natural context….

24. Key Points continued H. Comprehensive Programs - the national challenge is to close the gap between the quality of model programs and the reality of most publicly funded early educational programs - reviewed 10 model programs common elements = specific curriculum content, highly supportive teaching environments and planned generalization strategies, predictable routines, use of a functional approach to behavior problems, carefully planned transitions, active family involvement, highly trained staff, adequate resources, supervision of services - early intervention - intervention intensity - cannot be simply measured in terms of hours of enrollment but in terms of “active engagement”

25. Key Points of Section III A. Public Policy and Legal Issues written social policies should answer major ?s who shall receive the resources/services? (eligibility) who shall deliver the services? (provider) what is the nature of the services? (scope) what are the conditions under which the services will be delivered? (environments and procedures) - IDEA - related services - FAPE - ‘appropriate’ Vs ‘best’ - treatment cost

26. Key Points of Section III B. Personnel Preparations - diversity in the approaches to personnel preparations - staff must be familiar with theory and research including methods of ABA, naturalistic learning, incidental teaching, assistive technology, socialization, communication, inclusion, adaptation of environments, assessment and the effective use of data collection systems - direct service providers with support teams - recruitment issues - supervision, mentoring, consultation issues - paraeducators/paraprofessionals There are various models for the preparation with different levels of experiences provided...

27. Key Points of Section III C. Methodological Issues in Research - primary goal is to determine the types of practices that are the most effective for which type of student’s needs. - since not a homogeneous group creates substantial problems when trying use standard research methods - Types of literature - descriptive and attempts to explain the neurological, developmental, behavioral characteristics of ASD or addresses issues related to diagnosis and prevalence and/or examines the effects of comprehensive treatment programs (immediate and long-term outcomes) - funding issues - federal institutes Vs. parent-initiated, nonprofit - remarkably little integration across literature - methodology concerns -selection of participants in studies, internal and external validity, single-subject design, family characteristics, fidelity of treatment, sample number, follow-ups, etc…

28. Discussion • Can we ‘Talk the talk’ ?…try these on…. • Pivotal response treatment (PRT) • Incidental teaching • Applied behavioral analysis (ABA) • Intensive Behavioral Instruction (IBI) • Positive Behavioral Supports • Discrete trial therapy (DTT) • Joint attention • Theory of Mind • Central coherence • Executive functioning • Apraxia • Augmentative and Alternative Communication (AAC) • Research Methods and Design

29. Challenges • to ensure implementation of what is already known so that every child benefits from this knowledge and to work from existing research to identify more effective educational interventions for allchildren with ASD

30. Other “Aha’s” • Social interaction as the most “active ingredient” for success • Receive specialized instruction in settings in which ongoing interactions occur with typically developing children • Intensive Behavioral Instruction (IBI) --25 hours/week of “active engagement” versus 40 hours of “intensive treatment”

31. More Aha’s • SI and motor treatments--how effective are they? Do they facilitate progress or hinder by taking away valuable instructional time? • Much emphasis on PRT and naturalistic approaches • Big focus on generalization of abilities across multiple environments • Periodic assessment of progress--lack of documentable progress over a 3 month period indicates a need to re-evaluate intensity, curricula, instructional method, etc.

32. Conclusions and recommendations • Information regarding the nature and range of ASD should be disseminate to all those who come in contact with very young children • Involvement of families is essential - family-centered orientation • Training, information and resources available, support, networking, etc. • Ensure their active participation in the IEP process • Education remains the primary treatment for children with autism • Goals should address all domains areas of deficits • Documentation is critical to determine whether a child is benefiting for a particular intervention • No approach would be expected to be appropriate for all children with ASD

33. Results continued: • Entry into intervention ASAP • Active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hrs./wk.) with full year programming varied according to the child’s chronological age and developmental level (systematically planned and developmentally appropriate educational activities) • Children’s outcomes are variable and often difficult to measure • There does not appear to be a clear, direct relationship between any particular intervention and “recovery” from ASD

34. Results continued: - There is a need for support -Federal and State levels in policy development, financial support and research. - The establishment of regional resource and training centers to provide training and technical assistance. - Professional and advocacy groups should work collaboratively on behalf of students and their families. - Establishment of minimum standards for personnel in education is needed. - Require minimum standards in design and description of intervention projects - Treatment studies should recognize the common components of comprehensive programs and delineate the “active ingredient”