Autism Diagnoses and Access to Services: Latino and African American Parents’ Perspectives

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A collaboration between the Autism Speaks Autism Treatment Network at Children's Hospital Los Angeles and the Southern California Clinical and Translational

Science Institute

Katrina Kubicek, Marisela Robles, Kathryn Smith, Leslie Richards and Michele D. Kipke

Background

• Heath disparities continue to exist across many health domains

• One area that has more recently been identified is in the diagnosis of ASD; Latino and African American children tend to receive diagnoses of ASD later than White/Caucasian children

• Children of color are more likely to misdiagnosed, may present different symptoms and/or receive fewer specialty services

• Early diagnosis and treatment of ASD are critical for improved health and developemntal outcomes

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Study Design

• Qualitative focus to obtain context and full picture of parents’ experiences

• Designed to better understand the disparity in autism diagnoses among people of color

• Study research questions: – What is the process parents go through to receive their child’s first

diagnosis for autism spectrum disorder (ASD)? – How do parents of children with ASD access services for their child? – How do parents describe/characterize their experiences in accessing

services for their children?

• Worked with Regional Centers and other local providers to outreach to families

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Outreach and Recruitment

• Worked with four Regional Centers and 2 other organizations

• 105 parents expressed interest in project

• Total of 56 parents (43 Latino and 13 African American) participated in 10 focus groups

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Organization # of Focus Groups

Lanterman RC • 1 Latino parents of teens

• 1 Latino Spanish speaking

Westside RC • 1 Latino Spanish speaking

• 1 African American/Ethiopian

South Central RC • 2 Latino (bilingual/monolingual)

• 1 African American

Eastern Los Angeles • 1 Latino bilingual

Fiesta Educativa • 1 Latino Spanish speaking

Special Needs Network • 1 African American

Results: Process of Receiving Diagnosis

• Types of concerns parents have about child’s development – Delayed or loss of speech – Organizing toys – Late walker – Rocking/spinning

• Common for children to have dual diagnoses (e.g. Down’s, ADHD, NOS – not otherwise specified) and/or wrong diagnoses

• Pediatrician reactions to concerns – Almost universal descriptions of “not to worry”

• Need for “diagnosis” at both RC and schools

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Results: Characterization of the ASD diagnosis experience & access to services

• Challenges in working with providers (e.g., language, cultural barriers; limited knowledge)

• List of available services not provided – need to know what to ask for – Advocacy important for parents; legal representation suggested

• Use of other parents for assistance very common • Identified a common perception that there are better

services based on geography • Parents/families’ support and process of acceptance of

the diagnosis

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Implications/Recommendations

• Provider education (schools and pediatricians) • Broader dissemination of autism related materials and

resources – Parents know very little about autism prior to receiving a

diagnosis for their child

• Process of receiving a diagnosis is confusing – need to streamline

• Parent navigators or similar model to assist parents with this process – Navigation need may be ongoing as children develop and

additional needs are identified

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Three Overarching Needs Identified

Earlier Identification of

ASD and increased access

to services

Parent Education

Assistance Navigating

Complicated Service System

Need for Training

on Parental Advocacy

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Could this be accomplished with a promotora/community health worker intervention?

Use of a Promotora/Community Health Worker Model

• Idea well received by both Latino and African American parents – Need to “speak our language” – this came from an African

American parent

• Need to be highly visible (e.g. clinics, schools, parks, churches, WIC, media)

• Lots of training/education needed to: – Understand different symptoms of ASD and breadth of spectrum – Observe kids with ASD to understand behaviors – Provide resources and referrals – Provide workshops for parents (e.g., “Understanding autism”,

“how to deal with an autistic child”)

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Next Steps

• Investigating opportunities to adapt and test an intervention delivered by promotoras/CHWs – To what extent would adaptations be necessary for African American

families? – Potential outreach locations are numerous – Use of parent volunteers in Family Resource Centers?

• Outcomes for success are complicated – Children diagnosed – Services received – Behavioral outcomes – Parent satisfaction – Others?

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Discussion Points

• Does such a model make sense given your experiences in the community?

• Are there other needs for families that we have not identified? • What training do parent volunteers receive at FRCs?

– Are there specific things that would be useful for them to know?

• How could promotoras/CHWs best coordinate with FRCs?

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Acknowledgements

We would like to thank the many people who were a part of this effort including: • Michele D. Kipke, PhD • Katrina Kubicek, MA • Martha Porras-Hernandez • Leslie Richard, MD • Marisela Robles, MS • Mayra Rubio-Diaz • Kathryn Smith, DrPH

• We would also like to thank the Autism parent Advisory Board from CHLA,

as well as the community organizations that made this work possible including: East LA Regional Center, Fiesta Educativa, Lanterman Regional Center, South Central LA Regional Center, Special Needs Network and the Westside Regional Center

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