Autistic Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment|
Section I - Core Concepts That Guide Screening, Diagnosis and Assessment
Major advancements in the sciences of early identification and treatment of ASD have increased public awareness and focused more attention on this class of neurodevelopmental disorders. The core concepts that follow provide guidance for all professionals in the state of California who are responsible for the screening, diagnostic evaluation and/or assessment for intervention planning for persons with ASD. These core concepts suggest a common language by which both professionals and parents can communicate with each other. Importantly, they also provide referring parties with information about what they can expect from well-informed diagnostic and treatment planning teams.
These Guidelines represent wide collaboration and consensus from expert panels across the state of California regarding screening, evaluation and interdisciplinary assessment for individuals who may meet diagnostic criteria for autistic spectrum disorder. Variables considered by the panels in developing these Guidelines included current scientific knowledge, level of expertise needed to execute a particular function, pragmatics of clinical practice and respect for the family ecology.
The DSM-IV is the current classification standard for establishing a diagnosis of ASD.
The Diagnostic and Statistical Manual, 4th edition (DSM-IV) and the Diagnostic and Statistical Manual, 4th edition, Text Revision (DSM-IV, TR) published by the American Psychiatric Association (1994 and 2000) are the current standards for the diagnosis and classification of ASD. In clinical practice, the DSM-IV is a tool to inform clinical judgment. Its use requires specialized training that provides a body of knowledge and clinical skills (American Psychiatric Association, 1994). Derivation of a differential diagnosis between the ASD and other alternative psychiatric or developmental disorders should employ the DSM-IV criteria for analysis and clarification of diagnostic impressions.
Early identification is essential for early therapeutic intervention and leads to a higher quality of life for the child and family.
Numerous studies on early intervention outcome have delineated the benefits of early identification and intervention for children with developmental disabilities and, particularly, for those with difficulties on the autistic spectrum (Dawson & Osterling, 1997; Harris & Delmolino, 2002; Smith, 1999; Committee on Educational Interventions for Children with Autism, 2001). Strong empirical support exists for the benefits of intensive behavioral programs for young children with autistic spectrum disorders, although the precise teaching strategies and curricula content are often a topic of debate (Dawson & Osterling, 1997; Gresham
& MacMillan, 1998; Lovaas, 1987; Ozonoff & Cathcart, 1998; Rogers, 1998; Sheinkopf & Siegel, 1998). While the components of intervention programs are often a source of controversy, it is generally agreed that program intensity combined with early diagnosis and intervention can lead to substantial improvement in child functioning (Harris, 1994b; Sheinkopf & Siegel, 1998).
A substantial benefit of early intervention is the positive impact on the family's ability to interact in a developmentally appropriate manner with their child and to have a greater understanding of the disability and how it interacts with family life (Committee on Children with Disabilities, 1994). Early identification and diagnosis enhances the opportunity for effective educational and behavioral intervention; reduction of family stress by giving the family specific techniques and direction; and access to medical and other supports (Cox, Klein & Charman, 1999). In the end, early intervention improves the quality of life for the individual and his/her family, and is cost efficient for the human service delivery system (Jacobson, Mulick & Green, 1998).
Informed clinical judgment is a required element of a screening, diagnostic and assessment process that leads to accurate identification of and intervention planning for ASD.
In the absence of a single biomedical marker, simple laboratory test or procedure for identifying children who meet the diagnostic criteria for one of the ASD, accurate identification of individuals with ASD is entirely dependent on clinical competencies. For the diagnosis of ASD, the knowledge base must include familiarity and experience with the research literature and with children with ASD. Clinical judgment, based upon knowledge and experience with this population, is critical to the interpretation of DSM-IV criteria for ASD. Access to professionals who possess the necessary levels of clinical competency, such as pediatricians and psychologists, can be found in private health systems, state funded regional centers, and university medical centers.
The screening, diagnosis and assessment of ASD presents different challenges through the individual's life span.
While the core impairments in individuals with autistic disorder are commonly identified in early childhood, other spectrum disorders (PDD-NOS, Asperger's disorder) may be identified much later. Although identification of an ASD is usually made during childhood, it is important to recognize that ASD is a lifelong disability that compromises the individual's adaptive functioning from childhood through adulthood to variable extents, and requires different forms of intervention throughout the lifespan. Assessment should never be viewed as a discrete process, but rather as ongoing, flexible and responsive to changes in the individual's profile caused by intervention effects, maturation, family dynamics and other factors.
Practitioners must be aware of and understand confidentiality issues and honor the need for shared information.
Th[e] Guidelines encourage the use of interdisciplinary teams and interagency collaboration in the screening/early identification, diagnostic evaluation and assessment of individuals suspected of having an ASD. Th[e] Guidelines also recognize that "open" oral and written exchange of information among clinicians and agencies places a grave ethical and legal responsibility on those professionals to share only personal information that is clinically pertinent to the purposes of the intervention. A fully informed written consent at each step in the process is not only an ethical responsibility but a legal one as well. The scope of information shared should be decided on a "need to know" basis. For example, the education system might need specific information from the diagnostic and assessment team about a child's learning strengths and challenges. However, family history regarding psychiatric or other health illness that may be important to the diagnostic process should be held in confidence and not automatically shared with the educational planning team without specific consent. Such discretion can be difficult to manage when parents, for example, are asked to sign multiple releases of confidential information with many providers.
Accurate diagnostic evaluation and assessment requires collaboration and problem solving among professionals, service agencies and families.
Th[e] Guidelines promote interdisciplinary, interagency collaboration and partnership between the referred individual, their family and the service delivery system. It is critical that service providers promote collaboration across disciplines, agencies and programs to resolve conflicts of legal mandates.
Collaborative efforts should be made to avoid duplication of effort and maximize efficient use of time in pursuit of the desired outcomes for the individual and his/her family. Respect for divergent perspectives is necessary to delineate a comprehensive diagnostic profile of children, adolescents and adults with autistic spectrum disorders. Rather than viewing each component of the process as separate, these Guidelines stress establishing linkages among, for example, the primary care provider (PCP), the diagnostic and assessment team and educational planning teams. The diagnostic team, in turn, needs to keep the PCP informed by providing feedback and assisting the PCP in working with the family to ensure appropriate referrals for intervention services, transition planning and family support.
An interdisciplinary process is the recommended means for developing a coherent and inclusive profile of the individual with ASD.
Autistic spectrum disorders affect multiple developmental domains. Therefore, utilizing an interdisciplinary team constitutes best practice for a diagnosis of ASD and is an essential component of the assessment process. An interdisciplinary team is essential for establishing a developmental and psychosocial profile of the child and family to guide intervention planning. Such an approach promotes seamless communication among team members and leads to a more integrated, cohesive translation of findings. The interdisciplinary team creates a view of the individual that is detailed, concrete, easily understood and offers realistic recommendations (Klin, Sparrow, Marans, et al., 2000). A quality interdisciplinary process involves shared leadership, respect, integration and coordination among professionals. Team members recognize that their individual contributions inform construction of the overall picture of the child and that their individual interpretations enable formulation of conclusions and recommendations based upon the combined efforts of the team.
From screening through intervention planning, the evaluation process must be family-centered and culturally sensitive.
A family-centered frame of reference reinforces the concept of parents and caregivers as the most knowledgeable source of information about the child, acknowledges that the child is part of a larger family system and sets the stage for ongoing collaboration and communication between professionals and family members. The needs, priorities and resources of the family should be the primary focus and be respectfully considered during each step of screening, diagnostic evaluation and assessment for intervention planning.
A family-centered frame of reference includes cultural sensitivity and regard for family and community diversity of cultural values, language, religion, education, socio-economic and social-emotional factors that influence coping and conceptualization of the individual with ASD. Maintenance of family involvement should remain at the forefront of interactions in keeping with the concept of family as an equal partner in the diagnostic, assessment and intervention processes.
Timely referral and coordination of evaluation and ongoing assessment enhances outcome.
The diagnostic and assessment process should proceed in a timely manner to expedite the provision of services to the individual and family. Referring professionals should be familiar with options within the individual's geographic area and serve as the communication bridge with service providers to minimize service delays and duplicative efforts. While a child may receive a diagnosis at a young age, a comprehensive profile of skills and deficits is often not obtained for months (and sometimes years) after diagnosis. This incomplete or absent documentation of skills is problematic for the child, family and community service providers. Parental stress is heightened as parents worry about their child while also spending time and energy trying to arrange for needed intervention services. Timely referral, integration, and coordination of clinical teams and service providers lessens family stress and leads to more streamlined and efficient service delivery.
Rapid developments in the field require regular review of current best practice procedures and up-to-date training.
Rapid developments in conceptualization, measurement and basic research on ASD require a commitment to periodic review of current best practices. The heterogeneity of behavioral expression in ASD across age and developmental status, combined with rapid increases in clinical research and knowledge about the core features of the disorder, necessitate ongoing education and training opportunities for participating clinicians. Major shifts have occurred in scientific thinking about ASD. The knowledge base in ASD is changing so rapidly that parents and professionals face a daily challenge of keeping abreast of new developments. The challenge is to stay current with new methods of evaluation
and treatment, learn about and obtain the latest screening tools, and maintain an awareness of local and regional community resources.
Autistic Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment
California Department of Developmental Services: 2002
The Guidelines, a publication of the California Department of Developmental Services, are intended to provide professionals, policymakers, parents and other stakeholders with recommendations based on published research, clinical experience and judgment available about "best practice" for screening, evaluating and assessing persons suspected of having ASD. Complete Guidelines can be found at Autistic Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment