Diagnostic Dilemmas Differentiating Among the Labels Djour

Coufal, Crais, Moore, Wetherby, and Thrasher, 2006 Page 1 ASHA 2006 Diagnostic Dilemmas: Differentiating Among the Labels d’jour! Kathy Coufal: Facilitator, WSU Susan M. Moore & Amy Thrasher, UCB Amy M. Wetherby, FSU Elizabeth R.Crais, UNC Chapel Hill Slide design pictures courtesy of Hilton Head Start Agenda for the Fish Bowl • Introductions & Overview • Why is early identification of ASD an ongoing dilemma? • What’s in a label? • Child & Family Stories • Audience Responses and Discussion Why a Dilemma? Susan M. Moore Considerations: • Prevalence ~ “Going up?” • Concerns about “under or over” early identification • Early identification is necessary for + outcomes but concerns about labeling children too early persist • States or 3rd party payers don’t want to pay… “systems overload” yet the need for intensity in service delivery is evidence-based More Conundrums • Diagnosis can be viewed as stressful or a “relief” by families • Behaviorally defined diagnosis yet different “lens” used among disciplines with current research pointing to underlying neurological etiology &/ genetic factors • Media representation distorts so that myths and misperceptions persist although multiple evidence-based resources exist • Paucity of well prepared providers in SLP and related disciplines yet multiple experts and resources available. Prevalence of ASD • “Epidemiological studies of autism have important implications for research and clinical practice….”NRC,2001 • Estimated 2-5 in 10,000 in 1970s compared to current estimates of 5.5-5.7 children in 1000 (Centers for Disease Control & Prevention, (03-04) Considerations • Enhanced awareness of ASD in the general public • Changes in classification schemas and diagnostic criteria (1980’s) with increased use and current stabilization of criteria • Development of available behavior checklists that increase awareness but are of questionable validity before 18 months AND questionable sensitivity (Crais, 2006, p.145) • Awareness of overall development Seminar presented at the 2006 ASHA Annual Convention, Miami Florida Coufal, Crais, Moore, Wetherby, and Thrasher, 2006 Page 2 “Over & Under” Identification • Intervene early “with or without” clarity of diagnosis for optimal benefit from intervention • Evidence suggesting valid & reliable identification can be made prior to 18 months or 12 months in some cases • Wait until 2, 3, or 4 years of age to identify based upon behavioral criteria that differentiates ASD from SLI, SI dysfunction or other developmental concerns Implications: Early or Late? • Research supports early intervention before 3 years of age is more effective than intervention initiated in later developmental years (Crais et al ,2006; Wetherby & Woods, 2005) • Parents often first express concerns by 18 months with 30-40% of parents expressing concerns prior to 12 months (DiGiacomo & Fontbonne,1998; Siegal et al, 1988). • Parents can become more fearful and frustrated due to lack of a responsive system of support. Payers of last resort… • Currently it is reported that several insurance plans are specifically deleting ASD as a covered diagnosis or limiting “visits” to 20/year when we know there are documented positive outcomes for EI. • Although increased numbers of children described as ASD are receiving EI services under IDEA, the numbers are “less than expected” based upon prevalence data. Early ID: Stressful or… Influencing factors: Impacts of frustration and “not being heard” Multiple roles with multiple demands (teacher, advocate, parent, taxi driver) Costs to family life with intensive intervention (siblings, financial, time) …A Relief ” • Increased sources of support available • “Knowing” creates a path for action • Knowing what to do relieves depression (Bristol et al, 1993) • Increased parent-child interactions, more interest by parents,less stress and more + communication style (Koegel et al, 1996) Criteria for Diagnosis • “No single one criteria that is always typical of autism ” (NRC,2001 p2) • Definitions change with “lens” of viewer and over time based upon heterogeneity of behaviors yet improved understanding of early risk factors • Complexity and overlap in definitions mental retardation, SLI, ASD, PDD, Asperger’s, or somewhere “on the spectrum…” or with developmental changes or lack of behavioral changes in the child Seminar presented at the 2006 ASHA Annual Convention, Miami Florida Coufal, Crais, Moore, Wetherby, and Thrasher, 2006 Page 3 “Myths & Misperceptions Persist ??” • What do parents think? What do doctor’s think? ’What do we know given current evidence base? (Insert video snippet) • “I thought he wasn’t going to be cuddly, smile,or respond to me…so I thought… How could he have autism?” • “His physician noted his vocabulary was highly developed so told parents not to worry” but does he use vocabulary functionally and meaningfully? Personnel Preparation • “ Given that two of the major defining features of ASD are deficits in social interaction and communication skills, SLPs should be central to any team of professionals serving young childre with ASD” … and their families.( Crais, 2006,p141). • How is autism embedded in graduate coursework our programs ? • Are SLPs fully prepared to play a central role in assessment and intervention in collaboration with colleagues? What’s in a label? Amy M. Wetherby What does the evidence tell us about the label of ASD? Are there advantages for the child? Are there advantages for the family? What are the Active Ingredients of Effective Programs for Children with ASD? (National Research Council, 2001) • Early is better – Intervention by 3 ½ years is more effective than after 5 years • Intensity matters – Active engagement for 25 hour per week – Low student/teacher ratio (no more than 2:1) • Family participation is essential – Families were a critical component in effective programs • Goals need to be individualized and monitored regularly – Goals and supports need to target behavior, social, and academic challenges – Progress should be documented within 3 months What’s in a label? Advantages for the child • To connect the child with appropriate and intensive services • To help the child from being misunderstood or labeled a “spoiled” or “problem” child • To promote development of social communication and prevent development of problem behaviors and frustration What’s in a label? Advantages for the family • To alleviate stress over misdiagnosis • To help the family adjust to having a child with ASD • To help the family gather information about the child’s disability and access appropriate and intensive services • To help the family connect with other families who have children with similar characteristics Seminar presented at the 2006 ASHA Annual Convention, Miami Florida Coufal, Crais, Moore, Wetherby, and Thrasher, 2006 Page 4 How can the SLP help the family? • Give the family accurate information about the child’s suspected diagnosis and make referrals as needed • Encourage the family to play an active role in assessment – Use parent report tools to gather information about the child and family – Use assessment tools that encourage family participation What should the SLP know to serve children with ASD? • SLP should play a critical role in early screening, diagnosis and intervention – SLP needs to be aware of and have experience with valid screening and diagnostic tools – SLP needs to understand the core deficits of ASD and how to prioritize intervention goals – SLP needs to be knowledgeable about current, evidence-based practices • Give the family an opportunity to observe their child along with other children the same age • Build consensus with the family on what the child can and cannot do and family needs and priorities ASHA Ad hoc Committee on Autism Spectrum Disorders • ASHA (2006a). Roles and responsibilities of speechlanguage pathologists in diagnosis, assessment, and treatment of autism spectrum disorders across the life span: Position statement. • ASHA (2006b). Guidelines for speech-language pathologists in diagnosis, assessment, and treatment of autism spectrum disorders across the life span. • ASHA (2006c). Principles for speech-language pathologists in diagnosis, assessment, and treatment of autism spectrum disorders across the life span: Technical report. • ASHA (2006d). Knowledge and skills needed by speechlanguage pathologists for diagnosis, assessment, and treatment for autism spectrum disorders across the life span. ASD Video Glossary: Coming Soon to a Website Near You Collaboration to develop a web-based video tool to illustrate the early signs of ASD, the screening and diagnostic process, and common interventions for families and professionals. www.autismspeaks.org www.firstsigns.org firstwords.fsu.edu Child & Family Story 1 Elizabeth R. Crais Child & Family Story 2 Amy Thrasher Seminar presented at the 2006 ASHA Annual Convention, Miami Florida