NEED FOR A SUPPORT INFRASTRUCTURE
The nature of autistic spectrum disorders and other disabilities that frequently accompany them has significant implications for approaches to education and intervention at school, in the home, and in the community. As might be expected in a field with different philosophies and instructional strategies, there is also diversity in the approaches to personnel preparation. Approaches vary from preservice university models in a traditional special education program to mentoring in a major treatment center, where instruction is provided by psychologists, psychiatrists, special educators, speech and language pathologists, and others.
Fundamental questions include: Who should receive special instruction? Who should provide special instruction? What should the content of the program be? Where should this instruction take place? Approaches that emphasize specific “packages” may be particularly efficient, but they may understate the immediate and long-term needs of individual students with autistic spectrum disorders for behavior support and for instruction across areas. However, it is encouraging that there are models of personnel preparation programs in place within state systems and some universities, and, as indicated in the previous chapters, a wealth of knowledge about educational interventions in autistic spectrum disorders from which to draw. The challenge for states and communities and the children and families they are serving is to choose and implement effective approaches for personnel preparation, beyond a single training effort, to provide a continuum of services across time.
Teachers must be familiar with theory and research concerning best practices for children with autistic spectrum disorders, including methods of applied behavior analysis, naturalistic learning, incidental teaching, assistive technology, socialization, communication, inclusion, adaptation of the environment, language interventions, assessment, and the effective use of data collection systems. Specific problems in generalization and maintenance of behaviors also affect the need for training in methods of teaching children with autistic spectrum disorders. The wide range of IQ scores and verbal skills associated with autistic spectrum disorders, from profound mental retardation and severe language impairments to superior intelligence, make the need for training of personnel even greater. To enable teachers to adequately work with parents and with other professionals to set appropriate goals, teachers need familiarity with the course of autism and the range of possible outcomes.
Effective programming for children with autism and their families requires that the direct service provider (e.g., special education teacher, regular education teacher, early childhood teacher, speech and language pathologist) be a part of a support system team, not an isolated individual, that is struggling with complex neurological, sociological, educational, and behavioral problems. What is needed is a support infrastructure that can provide the direct service provider with the needed assistance (Gallagher and Clifford, 2000). Just as a physician in medicine is surrounded by an infrastructure of specialists, laboratories, medical schools, support personnel, and pharmaceutical research, a program for children with autistic spectrum disorders should have the various elements of infrastructure noted in Box 14.1. As shown in the box, there is a need for personnel preparation to produce qualified teachers and support staff and to provide technical assistance to answer problems faced by local practitioners, as well as to generate research, enhance communication, and support demonstration projects. As discussed earlier in the report, prevalence estimates of autistic spectrum disorders reflect continuing increases in the number of children who need services. The Twentieth Annual Report to Congress from the Department of Education’s Office of Special Education (OSEP) (1999:III–I) announced, “There is a serious shortage of special education teachers.”
Finding certified teachers in special education has always been an uphill struggle. If there is a shortage in general special education, that shortage is even more serious in the growing field of autistic spectrum disorders. Without an accurate data system in and across states, no one knows how many specialists are being trained, how many training programs are operational, or the professional disciplines that are involved. Of concern is not only the preparation of special education teachers or early interventionists, but also that of school psychologists, speech pathologists, behavior analysts, occupational and physical therapists, and
BOX 14–1 Elements of a Support Infrastructure
other professionals who fill important roles in the treatment programs of children with autistic spectrum disorders.
Special education statistics on the number of children with autism that are being served are available (OSEP, 1999), but it is not clear how accurate they are, given that school systems vary in the degree to which their classification systems have reflected the broadening of diagnostic criteria for autistic spectrum disorders in the last ten years. Without comprehensive planning and estimates, it will not be possible to allocate the proper amounts of personnel and fiscal resources. Personnel preparation has become an increasingly well-publicized issue as the number of children identified with autistic spectrum disorders has increased and their special needs have become more evident. Despite the widespread acceptance of the importance of an infrastructure to support the service delivery system, however, there has been relatively little written on the task of personnel preparation for providing interventions for children with autistic spectrum disorders. This chapter identifies the major trends in personnel preparation in this field and the special challenges they present to the professional communities involved.
KINDS OF PERSONNEL
Special education teachers and early interventionists come to working with children with autistic spectrum disorders from diverse backgrounds. These backgrounds may provide strong instruction in some aspects of development and education relevant to autistic spectrum disorders and little or no instruction in other aspects. Thus, many qualified special education and early intervention teachers have little experience or knowledge about the specific communication problems, limited social skills, and unusual behaviors of children with autistic spectrum disorders. Even if they had received solid training in general special education or special early intervention, they may also have had little or no instruction about such important strategies as applied behavior analysis, the use of physical structure and visual systems in teaching, or appropriate use of alternative or complementary methods of communication, such as sign language or picture systems.
As described earlier in Chapters 11 and 12, there is no one ideal curriculum for children with autistic spectrum disorders. Because these children have diverse needs and learn best in diverse contexts, most of the well-established comprehensive intervention programs discussed in Chapters 11 and 12 use many different curricula to design highly individualized programs for students (Anderson and Romanczyk, 1999; Strain and Hoyson, 2000). The need to address many different goals requires that teachers be familiar with alternative sets of curricula and various methods of implementing them. This requirement is strengthened by the
fact that many of the early intervention programs place great emphasis on a child’s engagement in learning and social activities as key elements predicting progress. A teacher of a child with autistic spectrum disorders is responsible for identifying the child’s needs, using appropriate curricula to address those needs, selecting appropriate methods to teach that curricula, and ensuring engagement in these activities despite the child’s limited social awareness. A teacher cannot acquire the skills to do this from academic classes or didactic presentations alone. In addition to an infrastructure and ongoing team to help in this process, opportunities to learn from and work with models of working classrooms and effective teachers are crucial for the new teacher of children with autistic spectrum disorders.
The importance of the increasing use of inclusion as an educational strategy makes some form of instruction for general educators or childcare workers also important. Such special instruction may take a form different from that of preparation of special education teachers, who might be expected to encounter a larger number of different children with autistic spectrum disorders in their careers. Issues such as the quick availability of support teams to provide in-service training and workshops for general educators are most relevant for this population. Availability of consultation about specific children is also critical.
One of the potential resources for providing special services for children with autism is the paraprofessional. Pickett (1996) has reported that there are 280,000 paraeducators who work in special education settings. Given the personnel shortages that seem likely to continue into the future, some attempt to include paraeducators within educational intervention programs for children with autism seems highly desirable (French, 1997; Skelton, 1997). Key issues are how these paraprofessionals are to be prepared and what roles they are to play in educational programs. OSEP has provided funds to the National Resource Center for Paraprofessionals at the City University of New York to develop guidelines for paraeducator roles and responsibilities, as well as to develop model standards for their training and supervision. Such standards could be helpful as a guide for training paraprofessionals and for alerting other professionals to their important supervisory responsibilities for such personnel.
One systematic use of paraprofessionals can be seen in the Young Autism Project at UCLA. This program uses a behavioral intervention curriculum that is designed to be delivered in a one-to-one, discrete trial format implemented by parents and trained college student therapists working in a child’s home. Brief training is provided to the student therapists before they begin, and ongoing supervision is an integral part of the treatment structure. This strategy includes programming that differs from most early interventions in being both home-based and very intensive. Thus, children receive extensive treatment in situations where
it would have been extremely difficult to develop similar programs if fully qualified teachers had provided equivalent services.
The burden of recruiting, organizing, and maintaining a cadre of student therapists requires commensurate management skills and sometimes requires time and personal funds from parents. Many families find it difficult to achieve their goals in terms of intensity of treatment because of the complexities of dealing with student-therapist schedules and attrition (Smith et al., 2000). How to maintain an existing pool of paraprofessionals and how to better integrate the transmission to them of training and knowledge, and how to maintain the balance between stability that should be available in school and center-based systems and the flexibility possible in some home-based and integrated programs are important questions.
PROVIDERS OF PERSONNEL PREPARATION
Significant questions include: Who are the professionals who can be counted upon to provide assistance? Where are such professionals prepared, and who is doing the preparation? As for curriculum and intervention strategies, there are diverse opinions.
One controversy is whether to train specialists for children with autistic spectrum disorders (these specialists may come from a range of backgrounds and are generalists across disciplines within this specialty), or to consider autistic spectrum disorders a unique topic within discipline-specific training (e.g., training of speech and language pathologists or psychologists). Models of both approaches are available: the TEACCH program is an example of the generalist model (Marcus et al., 2000), and the Denver Model (Rogers et al., 2000) is an example of building on separate, but integrated, interdisciplinary approaches (see Chapter 12). Similarly, advocacy groups such as the Autism Society of America and state parents’ and educational programs provide broad-based educational opportunities, while professional organizations (e.g., American Speech and Hearing Association) provide information that is more targeted to particular professions. The two models should be considered complementary.
CONTENT OF PERSONNEL PREPARATION PROGRAMS
The content of training programs reflects the diversity of approaches in the field of autism. There is little research comparing the relative effectiveness of personnel preparation models. Some programs have a specific philosophy and approach (e.g., UCLA, LEAP, TEACCH; see Chapter 12); others present more eclectic points of view. Some programs have extensive databases of specific activities (see McClannahan and
Krantz, 2000). The challenge for each program is how to provide differentiated curricula that are adapted to the social, cognitive, and communication needs of children with autistic spectrum disorders. Specific areas addressed by programs include patterns of development in autistic spectrum disorders, theories of underlying deficits and strengths, general and specific strategies of intervention, classroom-based approaches to communication and social development, and methods of evaluating effectiveness.
Teachers learn according to the same principles as their students. Multiple exposures, opportunities to practice, and active involvement in learning are all important aspects of learning in teachers, as well as in children. Many states and community organizations have invested substantial funds in teacher preparation, predominantly through workshops and large-audience lectures by well-known speakers. While such presentations can be inspiring, they do not substitute for training and ongoing supervision and consultation.
There are a number of creative models for the preparation of personnel who provide interventions for children with autistic spectrum disorders. These models have been implemented primarily at a state level (see Hurth et al., 2000). These models can be defined in terms of three stages of training, each related to a different level of experience with autistic spectrum disorders. The first level is initial training, which occurs preservice or in the first few weeks of school and assumes that the trainees have minimal knowledge or experience working with children with autistic spectrum disorders and their families (McClannahan and Krantz, 2000; Smith et al., 2000). The TEACCH program in North Carolina (Marcus et al., 2000) and the Denver program (Rogers et al., 2000), for example, have weeklong preservice workshops that are open to the public. This training usually has a strong hands-on component but also includes lectures and workshops. Across the comprehensive programs reviewed in Chapter 12, the range of time devoted to initial training was from a full-time week of lectures and teaching in a model classroom to didactic sessions held several times a week through the first four to six weeks of school.
A second level of personnel preparation consists of ongoing training and mentorship, usually in the first year of teaching. A lead teacher or supervisor who is available full-time to the staff often provides this training. The primary responsibility of this person, who typically does not have her or his own classroom, is the ongoing training and support of teaching staff in the programs for children with autistic spectrum disorders and also staff in regular classrooms where these children are included. Such a person is part of almost all the well-established programs (see, e.g., Powers, 1994; McGee et al., 1999). The lead teacher usually has general special education credentials and substantial experience in autism
beyond university courses. Several programs use systematic checklists with which teachers are rated to provide feedback to both teachers and supervisors about target areas to address (McGee et al., 1999). In addition, many programs involve consultation, dissemination of their own models, and workshops and conferences. The workshops and conferences are not sufficient, by themselves, to train personnel; they are one component of ongoing, individualized, hands-on inservice training (Marcus et al., 2000; McGee et al., 1999).
Many of the comprehensive programs reviewed in this and other documents recruit undergraduate university students to work in classrooms and provide practice for graduate students (Harris and Handleman, 1994). Practicum sites provide extremely valuable opportunities for students to work with children with autistic spectrum disorders. Often this training is highly organized within a program that focuses on autistic spectrum disorders, but it also may have relations to the general special education curriculum. This integration is a critical goal as an investment in future teachers and other special education personnel.
A third stage of personnel preparation includes the major effort to provide technical assistance to existing programs through numerous state and federal agencies (Hurth et al., 2000). The Indiana Resource Center for Autism publishes an annual directory of autism training and technical assistance programs. The most recent edition reports over 30 programs in 22 states. The center provides technical assistance aimed at helping communities, organizations, and families acquire the knowledge and skills to support children and adults in early intervention, school, community, and work settings. Although much more work is needed, a number of successful programs and efforts to provide personnel support are in place in different states (see Hurth et al., 2000).
Research concerning change in educational and other opportunities suggests that administrative attitudes and support are critical for improving schools. Finding ways of building on the knowledge of teachers as they acquire experience with children with autism and finding ways of keeping skilled personnel within the field are critically important. Providing knowledge about autistic spectrum disorders to special education and regular education administrators, as well as specialized providers with major roles in early intervention (e.g., speech and language pathologists), will be critical in effecting proactive change.
One of the clear needs in the field of autism is to increase the number of well-prepared professionals to work with children and their families. State and federal agencies have traditionally been the source of funds that can be used by institutions of higher learning, clinics, and other training
centers to increase the supply of qualified persons. Increasingly, the demand for these programs has come from local communities and parent and other advocacy organizations. While the National Institutes of Health have supported a variety of research projects related to both children and adults with autism, the major federal agency for personnel preparation has been the Department of Education’s Office of Special Education Programs. In 1999, the agency supported personnel preparation programs in eight universities that were preparing master’s degree personnel in special education and in speech-language pathology with an emphasis on autism. Other OSEP funds went to technical assistance operations at the state and local levels. The agency also funds a major technical assistance program, the National Early Childhood Technical Assistance System, which has produced a series of widely distributed publications, such as an annotated bibliography on autistic spectrum disorders, a list of national contacts and other references on autism in early childhood, and a list of OSEP-funded early childhood projects and materials on autistic spectrum disorders. This last publication reports on a variety of print products, such as a social skills training program for the classroom, parent training modules, and suggestions for developing individualized supports for young children with autism and their families.
OSEP provides support for various demonstration projects designed to illustrate best practices in the area of autism, including Alaska’s autism intensive early intervention project at The University of Alaska at Anchorage, a model for early treatment of toddlers at Emory University, and a school-based preschool program for children with autism at University of Washington. In addition, a major effort to replicate the Lovaas (1987) intervention program includes 13 centers in the United States and 4 in foreign countries; the United States sites are funded by the National Institute of Mental Health.
Outreach projects are designed to disseminate proven practices and to encourage their replication beyond the original program. An example of such outreach is a project at the University of South Florida, Delivering Individualized Support for Young Children with Autism, which assists state systems in implementing a program of comprehensive and effective support for young children with autism and their families.
The Council for Exceptional Children (2000) has been a leader in the development of standards for many different fields of special education. The council currently does not differentiate specific standards for educating children with autism; it combines standards for the category of autism with those for children with mental retardation and other developmental disabilities. The council is considering developing a separate certificate for special areas such as autism to recognize teachers who have participated in specific personnel preparation within this field.
The developers of educational strategies for children with autistic
spectrum disorders have a responsibility to describe their procedures with enough clarity that others can replicate their approaches. Of all the interventions available, except for those discussed in Chapters 11 and 12, few interventions for these children are manualized at this time. Thus, much information is by word of mouth or informal communications. Providing treatment manuals, instructions, and procedures in print, videotape, and audiotape media will assist personnel preparation activities for improving the education of young children with autistic spectrum disorders.