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

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

Methods and Procedures  Measure  Multiple choice and Likert scale on 20 question survey  file://localhost/Users/elizabethpreston/Desktop/ASD Parent Survey.docx 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.docxfile://localhost/Users/elizabethpreston/Dropbox /URLEND/Autism Research Project/M-CHAT Description.docx  Data collected November 2011-February 2012

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

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

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

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)

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

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

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.

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

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.

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