S

Parent Perspective on Autism Spectrum

ScreeningPaul Carbone

Natalie WahmoffJanel Preston

Elizabeth PrestonJeff Hall

Jill DrysdaleTracy 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

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

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

Behavior & Dev

Learning no concerns

about ASD

ID Concerns w/ Behavior &

Dev

Obtaining EI Services

0%

25%

50%

75%

100%

Benefits of Screening

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