1. Parent Perspectives on Screening Young Children for Autism Within the Medical Home Paul Carbone, M.D., Tracy Golden, Ph.D., Jeff Hall, Ph.D., Elizabeth Preston, Au.D., Janel Preston, B.S., Natalie Buerger, M.S., Carole Stipelman, M.D., M.P.H. UTAH REGIONAL LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL DISABILITIES  The early symptoms of autism can be detected between 12 and 24 months of age.  Effective interventions for children with autism that begin during the first and second year of life can significantly improve cognition, language and adaptive skills.  The age of diagnosis in the United States (4 years) is far older than when effective intervention could begin.  In 2007 the American Academy of Pediatrics (AAP) recommended adding autism screening to the18 and 24 month visits with primary care providers (PCPs) in order to aid in early identification of at-risk children.  Autism specific screening involves the use of a standardized tool that is completed by the caregiver and determines if a child has sufficient risk to require a comprehensive autism evaluation.  Despite these recommendations, autism screening has not become widespread practice within primary care settings across the US.  One barrier to screening is the concern that caregivers might have negative attitudes towards autism screening.  There have been no studies of parental perspectives about autism screening in terms of the perceived risks, benefits, and stressfulness of the process. RESULTS Figure 2. Benefits of Autism Screening Identified by Participants (n=77) Table 3. Responses from Participants who Indicated that the Provider Expressed Concerns Based on Results of M-CHAT (n=5) Figure 1. Participants’ Knowledge of Autism and Beliefs with Regards to Autism Screening (n=153) Drawback Response (%) Distraction from other topics to discuss with provider 1.3 Too stressful to talk about autism1.3 Worries of “labeling” child with diagnosis of autism 2.6 More paperwork to fill out1.3 Table 2. Drawbacks of Autism Screening Identified by Participants (n=76) OBJECTIVE  To assess parent perspectives on multiple aspects of autism screening, including the perceived benefits, drawbacks, stressfulness, level of support and usability of an autism screening tool. BACKGROUND  Convenience sample of parents of children between 16 and 30 months presenting to a primary care pediatric practice in Salt Lake City, Utah that utilized the Modified Checklist for Autism in Toddlers (M- CHAT) at the 18 and 24 month visits.  A survey was developed to assess the parents’ perspectives on autism screening.  The survey, administered between November 2011 and February 2012, consisted of two parts:  Part 1 (completed by all participants): demographic variables of participants; level of concern about the child’s development; familiarity with the early signs of autism; and level of support for AAP autism screening recommendations.  Part 2 (completed by participants who completed an autism screening tool during their child’s visit): overall stress level regarding the autism screening process; ease of completing the M-CHAT; understanding of the screening results; perceived benefits and drawbacks of autism screening. METHODS Characteristic Response (%) Race African American4 Latino6 White77 Other or not identified13 Language spoken at home (% English)89 Household income $40,000/yr. or less36 $41,000 - $80,000/yr.22 Greater than $81,000/yr.28 Highest educational achievement College graduate50 Graduated HS46 Less than HS3 Had concern about child’s behavior or development prior to visit (N=151) 29 Table 1. Demographic Characteristics of Participants (n=153)  Parents of children who are screened for autism in a primary care setting do not perceive the process to be stressful and report strong support for autism screening.  Parents report that autism screening allows them the opportunity to talk to the PCP about their child’s behavior and development, to learn more about autism, and to identify concerns in their own child.  Very few parents identified negative aspects of autism screening. RESULTS Figure 3. Participants’ Experiences with the Modified Checklist for Autism in Toddlers (M-CHAT) Item Response (%) “Completely understand” results of M-CHAT100 Prior concerns about behavior/development40 Strong agreement with result of M-CHAT (n=4)100 Plan to follow provider’s recommendations about the concerning results 100 Support AAP recommendations to screen all toddlers for autism (n=4) 100 STRENGTHS  This study utilized a sample of parents of children who presented to a primary care pediatric practice, many of whom had just gone through the process of autism screening. LIMITATIONS  The demographic characteristics and small sample size may limit the generalizability.  The small sample size limited any univariate/multivariate analysis. CONCLUSIONS ACKNOWLEDGEMENTS IMPLICATIONS  Efforts to achieve universal autism screening for for toddlers within primary care should continue.  Future studies should highlight the perspectives of parents whose children are found to be at-risk from autism screening.  The authors would like to thank the pediatricians, staff and parents at Wasatch Pediatrics at St. Marks for their participation in this study.