New Autism Collaboration Develops Practices in Communication Assessment for SLPs

You have accessThe ASHA LeaderFeature1 Mar 2005New Autism Collaboration Develops Practices in Communication Assessment for SLPs Rhea Paul, and Amy Wetherby Rhea Paul Google Scholar and Amy Wetherby Google Scholar https://doi.org/10.1044/leader.FTR7.10032005.11 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In The National Institute on Deafness and Other Communication Disorders (NIDCD) and the National Alliance for Autism Research (NAAR) have teamed up to bring together scholars in child language development and disorders and clinical researchers in communication in autism. Their aim is to increase collaborations and formulate recommended practices for speech-language pathologists who work with childr en with autism spectrum disorders (ASD). In April 2004, NIDCD and NAAR, a private, parent-run foundation that raises funds and provides support for research on ASD, jointly sponsored a conference in Atlanta, GA. Psychologists, special educators, and SLPs, all of whom shared an interest in normal language development and language disorders in children with ASD, met to exchange research findings and identify goals for the group. One outcome of this conference was the creation of a subcommittee charged with establishing guidelines for recommended practices in evaluating communication in ASD. Members of this committee include Rhea Paul and Amy Wetherby (co-chairs), Paul Yoder, Sally Rogers, Helen Tager-Flusberg, Mabel Rice, and Larry Leonard, as well as NIDCD representative Judith Cooper and NAAR representative Andy Shih. Assessment Autism is a serious neuropsychiatric disorder characterized by significant deficits in communication and social interaction, as well as stereotyped and repetitive behaviors. Once thought to be relatively rare, autism is now diagnosed more frequently for reasons including refinements in criteria, more active efforts to locate, identify, and provide early intervention for very young children with disorders, and a broadening of the definition to include a spectrum of related conditions (i.e., ASD). These changes have resulted in larger numbers of these children finding their way onto the caseloads of SLPs in both early intervention and educational settings. Unfortunately, not all graduate education programs that provide pre-service training for SLPs have been able to keep pace with the rapid expansion of knowledge about ASD. Consequently, many SLPs who work with children feel inadequately prepared to participate in the diagnosis of autism, assess the unique communication profiles seen in this population, and to plan and implement educational programs. Treating the communication disorders of children with autism is clearly a daunting task. Because communication deficits are at the core of the autistic syndrome, these deficits affect all aspects of the child’s functioning. As such, communication treatment for children with ASD, as for other communication disorders, requires close collaboration among teachers, SLPs, special educators, other service providers, and family members. The assessment of the communication skills of these children, however, is the primary responsibility of the SLP. What makes this task so difficult is that: The standard tests usually used to assess speech and language disorders in young children do not focus on social communication skills that are the core deficits present in children with ASD at early levels of functioning. This limits both the ability to identify children with ASD early and the information needed to understand core deficits such as joint attention and shared affect. Young children with ASD who do not speak often have impaired receptive language as well. They may appear simply “untestable” on standard measures. As the best practice, the SLP needs to select other options for gathering information about the children’s level of communication development. Some speakers with autism have well-developed vocabulary and syntax, and may score at or above the normal range on tests of language function. Language sampling procedures, which provide quantitative measures of semantics and syntax, may fail to show significant differences between these speakers with ASD and age-mates. Even measures that purport to test pragmatics frequently fail to identify deficits in these high-functioning individuals because some children with autism have strong cognitive skills that allow them to “psych out” the tests. These speakers frequently have difficulty in ordinary social interactions and in functioning in classroom settings, yet they may fail to qualify for speech and language services. Guidance The NIDCD/NAAR committee, in addition to fostering research and collaboration among participants, also felt a need to provide information to SLPs who are facing these challenges, often with little support from other professionals, and with limited experience or knowledge from their pre-service education. The committee decided to target as one of our first activities the task of providing guidance to SLPs in the assessment of their clients with ASD. To achieve this goal, we divided our task into two sections: one that would address communication assessment in prelinguistic children, and the other that would discuss issues in the assessment of children with autism who speak. Amy Wetherby agreed to chair the prelinguistic committee, with members Rhea Paul, Sally Rogers, and Paul Yoder. Rhea Paul chairs the second group, with members Larry Leonard, Mabel Rice, and Helen Tager-Flusberg. Judith Cooper of NIDCD and Andy Shih, chief science officer of NAAR, serve as ex officio members. The committee defined its tasks as: Identifying critical challenges in the evaluation of communication in children with ASD Reviewing methods for earlier detection and the process for referral of children suspected of ASD for further assessment Providing guidelines for evaluation and establishing eligibility for SLP services Reviewing available tests and other assessment methods to identify those that address core areas of deficit in this population Describing informal methods of assessment that would assist in establishing baseline function, developing educational plans, and monitoring progress in communication intervention for children with ASD Identifying research needed to improve assessment practice Over the next few months we plan to formulate these guidelines and disseminate them to practicing SLPs. We encourage SLPs who work with children with ASD to watch for these guidelines, and to communicate with us if you have any wisdom to share with your colleagues on solving the difficult problem of assessing communication in ASD. ASHA Committee Information A new ASHA Ad Hoc Committee on Autism Spectrum Disorders was established by the ASHA Executive Board in 2004 with a charge to develop a family of documents (i.e., technical report, position statement, guidelines, and knowledge and skills) related to the role of the SLP in the diagnosis, assessment, and treatment of communication disorders associated with autism spectrum disorders across the age span. The committee members are Amy Wetherby (chair), Sylvia Diehl, Emily Rubin, Adriana Schuler, Linda Watson, Jane Wegner, Ann-Mari Pierotti (ex-officio), and Celia Hooper (monitoring vice president). For more information, contact Ann-Mari Pierotti at [email protected]. In 2004, ASHA’s Executive Board established a new ASHA Ad Hoc Committee on the Role of the Speech-Language Pathologist in Early Intervention to develop a family of documents (i.e., technical report, position statement, guidelines, and knowledge and skills) related to the role of the SLP in the assessment and treatment of communication and swallowing disorders in the birth-to-three population. The documents will address issues related to specific cultural and linguistic needs of infants and toddlers and the need for culturally appropriate practice. The members of the committee are M. Jeanne Wilcox (chair), Melissa Cheslock, Elizabeth Crais, Trudi Norman-Murch, Rhea Paul, Froma Roth, Juliann Woods, Diane Paul (ex officio), and Celia Hooper (monitoring vice president). For more information, contact Diane Paul at [email protected]. Autism Spectrum Disorders-Research and Support Collaborative Programs of Excellence in Autism (CPEAs) In 1997, the National Institute of Child Health and Human Development (NICHD), in collaboration with NIDCD, started a five-year, $45 million, international Network on the Neurobiology and Genetics of Autism. The Network included 10 CPEAs that would conduct research to learn about the possible causes of autism, including genetic, immunological, and environmental factors. In 2002, NICHD and NIDCD renewed funding for the CPEA Network, agreeing to provide $60 million over a period of five years. The CPEAs link 129 scientists from 23 universities in the United States, Canada, Britain, and five other countries, and more than 2,000 families of people with autism. As a result of the CPEAs, researchers now have data on the genetics and outward characteristics of the largest group of well-diagnosed persons with autism in the world. Visit www.nichd.nih.gov/autism/research/cpea.cfm for information about specific sites and focus of research. The Studies for the Advancement of Autism Research and Treatment (STAART) Network The Children’s Health Act of 2000 mandated that NIH support a new program of at least five centers of excellence focused on autism and related disorders. To address this mandate, the Institutes involved in the NIH/ACC, including NIDCD, NICHD, NINDS, NIMH and NIEHS, initiated the STAART Network, a five-year, $65 million research effort that focuses exclusively on autism. Each Network site supports and conducts both individual and collaborative projects to learn more about autism causes, diagnosis, early detection, prevention, and treatment. Visit http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/nih-initiatives/staart/index.shtml for information about specific sites and focus of research. Autism Research Matrix In NIH Appropriations Bill for Fiscal Year 2003, Congress requested that a panel of expert scientists be convened to evaluate the field of autism research and develop a matrix of action items that could be used in planning for future research. The autism research matrix was developed by a process of reviewing the status of important scientific content areas for autism, identifying roadblocks within these areas, and then formulating activities to overcome the roadblocks. These proposed activities were then placed in a matrix according to the level of risk for their success and the timeframe for undertaking them. The matrix includes content areas of communication and collaboration, characterization of autism, school and community interventions, early intervention, epidemiological studies, specific treatments, neuroscience, screening, and the role of the environment in autism. Visit www.nimh.nih.gov/autismiacc/CongApprCommRep.pdf for more information. Pre- and Post-Doctoral Candidates in Language and Autism: Co-Mentor Program This initiative for individual predoctoral and postdoctoral fellowships in the area of language and autism has just been issued by NAAR. NIDCD co-sponsored earlier activities with NAAR that led to this initiative. Visit http://www.autismspeaks.org/science/research/grants/funded_2005_naar.php for more information. Research on Autism and Autism Spectrum Disorders In April, 2004, the NIH published the Program Announcement: “Research on Autism and Autism Spectrum Disorders,” as a reissue of the previous announcement. The purpose of this program announcement is to encourage grant applications for the support of research designed to elucidate the diagnosis, epidemiology, etiology, genetics, treatment, and optimal means of service delivery in relation to Autistic Disorder (“autism”) and autism spectrum disorders (Rett’s Disorder, Childhood Disintegrative Disorder, Asperger’s Disorder, Pervasive Developmental Disorder-Not Otherwise Specified, or “Atypical Autism”). Visit http://grants.nih.gov/grants/guide/pa-files/PA-04-085.html for the announcement. NAAR-NIDCD Collaborations NAAR and NIDCD continue to explore a number of possible funding opportunities for research and training, and several initiatives are currently under development. ASHA Activities Related to Autism Committee Work Ad Hoc Committee to Review /Revise Current Practice Policy Documents Related to Mental Retardation and Developmental Disabilities Members of the committee are Howard Goldstein (chair), Kevin Cole, Phil Dale, Jon F. Miller, Patricia A. Prelock, Krista M. Wilkinson, Diane Paul (ex officio), and Celia Hooper (monitoring vice president). New position statement, technical report, guidelines, and knowledge and skill documents. The documents address the needs of individuals with communication disabilities across diagnostic groups, including autism. (Nov. 2004-Documents undergoing peer review) For further information, contact Diane Paul (ex officio) at [email protected] Ad Hoc Committee on Autism Spectrum Disorders. Members of the committee are Amy Wetherby (chair), Sylvia Diehl, Emily Rubin, Adriana Schuler, Linda Watson, Jane Wegner, Ann-Mari Pierotti (ex-officio), and Celia Hooper (monitoring vice president). Developing a position statement, technical report, guidelines, and knowledge and skill documents related to the role of the speech-language pathologist in the diagnosis, assessment, and treatment of communication disorders associated with autism spectrum disorders across the age span. For further information, contact Ann-Mari Pierotti (exofficio) at [email protected] National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC). The 2004 members of the NJC and their respective representatives include American Association on Mental Retardation, Mary Ann Romski; American Occupational Therapy Association, Jane Davis Rourk; American Physical Therapy Association, Irene McEwen; ASHA, Nancy Brady (ASHA chair), Mary Hunt-Berg, and Diane Paul (ex officio); Council for Exceptional Children, Division for Communicative Disabilities and Deafness, Lee McLean (joint committee chair), Billy Ogletree; RESNA, Beth Mineo Mollica; TASH, Ellin Siegel and Martha Snell; and United States Society for Augmentative and Alternative Communication, Rose Sevcik. Developed a set of frequently asked questions for consumers/parents and professionals related to communication services and supports for persons with severe disabilities (available on the NJC web page). For further information, contact Diane Paul (ex officio) at [email protected]. Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society Completed a practice parameter on screening and diagnosis of autism in 2000. Barry Prizant was ASHA’s representative to the group Working on a practice parameter on intervention of autism. Amy Wetherby is ASHA’s representative to the group. For further information, contact Diane Paul at [email protected]. Federal Legislative, Regulatory, and Research Initiatives Related to Autism Legislation and Regulations There has been an increased focus on autism through the appropriations process to the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention (CDC), as well as at NIH. This was triggered by the Children’s Health Act of 2000 (passed on 10/17/2002, Public Law No. 106-310) that also reinforced ASHA’s EHDI provision. The autism provisions are under Title I and the EHDI provisions are under Title VII. On Dec. 8, 2003, the U.S. House of Representatives passed the Omnibus appropriations bill-one piece of legislation containing the seven federal fiscal year 2004 spending bills that remain outstanding. Included within this legislation is a funding increase of $3 million above the President’s budget for autism surveillance activities at CDC in fiscal year 2004. Also included in the bill is $2,244,000 in funding to establish a “national awareness and education program that will widely disseminate information regarding autism identification and diagnosis to both families and health care providers.” For further information, contact Jim Potter at [email protected]. Research Initiatives Proposed 10-year autism research matrix and roadmap by the U.S. Department of Health and Human Services and the U.S. Department of Education. For further information, contact the SLP practices unit-Diane Paul at [email protected], Susan Karr at [email protected], or Jeri Berman at [email protected]; or the Government Relations and Social Policy unit—Jim Potter at [email protected]. Author Notes Rhea Paul, is professor of Communication Disorders at Southern Connecticut State University and a principal investigator at the Yale Child Study Center. Contact her at [email protected]. Amy Wetherby, is the Laurel Schendel Professor in the Department of Communication Disorders at Florida State University and is executive director of the Florida State University Center for Autism and Related Disabilities. Contact her at [email protected]. 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