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Parent Perspective on Autism Spectrum Screening

Parent Perspective on Autism Spectrum Screening. Paul Carbone Natalie Wahmoff Janel Preston Elizabeth Preston Jeff Hall Jill Drysdale Tracy Golden. Background.

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Parent Perspective on Autism Spectrum Screening

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  1. Parent Perspective on Autism Spectrum Screening Paul Carbone Natalie Wahmoff Janel Preston Elizabeth Preston Jeff Hall Jill Drysdale Tracy Golden

  2. Background • The American Academy of Pediatrics recommends universal screening for ASD at the 18 and 24 month old check ups. (Johnson et al., 2007) • Despite these recommendations, some have made arguments against routine screenings (Al-Qabandi et al., 2011) • Currently there is a lack of exploration of parents thoughts and feelings concerning this process. (Crais et al., 2011) • The objective of this study is to analyze parents’ perspective of autism screening using an interdisciplinary, culturally sensitive and family-centered approach

  3. Methods and Procedures • Measure • Multiple choice and Likert scale on 20 question survey • file://localhost/Users/elizabethpreston/Desktop/ASD Parent Survey.docx • Procedures • Participants were parents of young children being seen for 18- and 24- month well child visits at a pediatric practice in Salt Lake City. They completed a survey about their perspectives regarding the screening process for autism spectrum disorders.file://localhost/Users/elizabethpreston/Dropbox/URLEND/Autism Research Project/M-CHAT Description.docx • Data collected November 2011-February 2012

  4. Sample Demographics • 37% of caregivers completed the survey • 80.3% were mothers • 89.5% reported English being the primary language

  5. Results • 87% supported the AAP recommendations • 81.3% reported having some familiarity with the signs of ASD • 13% reported having a family member with ASD • 92.2% felt the M-CHAT was “very easy” to understand • 85.3% did not experience any stress when finding out that their child was being screened for ASD

  6. Results • 6.5 % reported the PCP raised concerns based on the results of the M-CHAT (5) • 4 of 5 – agreed with PCP concerns • 4 of 5 – plan to follow through on PCP’s recommendations

  7. Strengths/Limitations • The limitations are that this is a small sample size that may limit the ability to generalize the findings • A large portion of caregivers who completed the M-CHAT did not complete the additional questions regarding ease, understandability, and potential benefits and drawbacks of screening • A strength is this survey was given in a PCP office where screening for ASD is recommended (“real world” experience)

  8. Conclusions • Concerns previously raised regarding the stress & potential negative impact of the screening were addressed in this survey • Found high level of caregiver support for the ASD screening & a low level of stress (this is not dependent on ethnic or socioeconomic differences) • As long as the PCP is equipped to give the M-CHAT and to offer appropriate recommendations and resources, the screening is a positive addition to 18 and 24 month well-visits

  9. Natalie Feedback • Would be beneficial to have the initial seminar on clinical experiences earlier • More opportunities to discuss clinical experiences with other trainees

  10. Janel Feedback • A more in depth look at the history and laws surrounding disabilities • Having more seminars around those topics. • I believe that having a better understanding of the past helps us realize why things need to continue to change. As leaders we need to be aware of these issues. • I also feel that as future leaders we need to be more aware of the laws that affect this population. • Working in the education field I am often asked by parents about the rules and regulations. By having a understanding of these I am able to help them make educated choices.

  11. Elizabeth Feedback • PDC • Getting parent feedback would be helpful • Making sure people asked their questions prior so the session can focus on offering suggestions • Clinical Experiences • Discussing trainees’ different experiences • Really enjoyed following families through the clinic with the different disciplines • Conferences • Really appreciated the opportunity to attend the EHDI conference – enjoyed going to talks by different disciplines and seeing things from their perspective

  12. Jeff Feedback • The development of a training manual for URLEND trainees outlining expectations, clinical experiences, logistics for distance trainees, and project guidelines (possibly an online PDF). • A system of feedback/debriefing with URLEND faculty following PDC experiences would allow for more interdisciplinary/multidisciplinary learning for trainees • Formatting the AE track to be more frequent (similar to the previous year) may provide trainees more exposure to materials and faculty.

  13. Acknowledgements • Paul Carbone – Faculty Mentor • Jill Drysdale – Parent Consultant • Families who participated in the Focus Group • Wasach Pediatrics, Inc., St. Mark’s Clinic • Amy Boynton

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