58 - “Latino Parents Awareness of Referral for Autism Spectrum Disorder Evaluation and What Autism Means to Them: A Pilot Study”

Poster Number: 58
Publication Number: 58.202

Jenesis M. Yanez, Vanderbilt University Medical Center, Hermitage, TN, United States; Adriana Bialostozky, Monroe Carell Jr. Children's Hospital at Vanderbilt, nashville, TN, United States; Laleh Bahrami, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, TN, United States

Background: Latino children are more likely to be identified and diagnosed with Autism Spectrum Disorders (ASD) later, and when diagnosed, they present with more severe symptoms. Parental knowledge about autism, and barriers to specialized care, seem to play an essential role in such delay.

Objective: To explore (1) if the family is aware of the referral made to a Developmental-Behavioral specialist and underlying concern, (2) parental knowledge about autism and education provided, (3) need for further information regarding the referral to the specialist and preferred format.

Design/Methods: Self-identified Latino parents of children 0-7 years old referred to the Vanderbilt Child Development Center due to concern for ASD were interviewed by phone in their preferred language, Spanish or English. Parent interviews consisted of 4 sections: (1) Knowledge about the reason for the referral, (2) Concerns regarding child’s development and behavior, (3) Understanding of autism and recall of education by the provider, and (4) Demographics. Interviews were recorded, transcribed verbatim, translated, and coded until saturation of themes was obtained. We identified themes within and across respondent groups. This study was completed at an academic center that treats underserved populations.

Results: Twenty semi-structured interviews were completed, the majority in Spanish (80%). Most were mothers (95%). The mean parental age was 31. Most parents (90%) were born outside of the United States (US). Their country of origin was Mexico (n=8), Honduras (n=5), Guatemala (n=4), or other Latin American countries. Parents have been in the US for an average of 11 years. Over a third have less than a high school education equivalent (n=9). Eighty-five percent of families spoke Spanish at home and had Medicaid. All 20 parents were aware of the referral, and 90% reported concerns about the child’s development, mainly speech-language delays (n=9). Most families (65%) did not mention autism as the reason for referral, and many were unfamiliar with ASD (n=9). More than half (n=11) did not recall their provider discussing ASD. The preferred format for parents to obtain information about the referral was face-to-face instead of information on a handout, a phone call, a website, or a video.Conclusion(s): Many Latino families do not know what autism spectrum disorder is, despite referral for evaluation. Providers must educate families on ASD and inform and clarify the reasons for the referral during their face-to-face interaction with the family. This component of family education is critical and should be a standard part of the referral process.
CV Yanez 2022CV YANEZ 2022.pdf