Identifying Needs of Ethiopian and Eritrean American Parents of Autistic Children.
Ethiopian and Eritrean families face steep cultural and money walls when seeking autism care, so BCBAs must redesign intake and outreach.
01Research in Context
What this study did
Azeb and colleagues asked Ethiopian and Eritrean parents in the United States what gets in the way of autism services for their kids.
The team used a survey. Parents shared real-life problems like few providers, high costs, and weak school help.
What they found
Parents said they struggle to find any BCBA who understands their language or culture.
They also feel schools give little support. Money and long drives make the gap worse.
How this fits with other research
Parish et al. (2012) saw the same trouble for Latino families. Bad provider talks led to less care, matching the new Eritrean and Ethiopian story.
Blacher et al. (2019) showed Latino kids got fewer sessions than Anglo kids even when symptoms were alike. Azeb’s findings extend this pattern to East African heritage families.
Dudley et al. (2019) interviewed Somali parents in the UK and found stigma plus religious views shaped service use. Azeb’s survey echoes these themes, showing the problem crosses African diasporas.
Dennison et al. (2019) guide BCBAs to use bilingual materials and ask families about cultural goals. Azeb’s data prove that advice is still needed in 2024.
Why it matters
If you serve East African families, expect extra barriers. Start by asking parents what language they prefer and what community supports they trust. Offer low-cost options and ride shares. Share the Dennison tips with your team so every program feels welcoming, not foreign.
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02At a glance
03Original abstract
Collectively, Ethiopians and Eritreans represent one of the largest African immigrant groups in the US, yet no research to date exists on families from these communities raising autistic children. The purpose of our study was to examine the experiences of Ethiopian and Eritrean families of autistic children including experiences (1) receiving the autism diagnosis and interacting with healthcare providers, (2) obtaining services and supports for children (including satisfaction with services and barriers to care), and (3) accessing services and supports for caregivers and families (including needs and barriers to care). Ethiopian and Eritrean parents (N = 51) raising autistic children in the US completed an online survey. Parents reported limited prior knowledge of autism within their communities and had varied experiences with healthcare providers through the diagnostic process. They endorsed barriers to accessing care for their child and family supports (such as provider shortages and cost of services), service needs, and dissatisfaction with school-based and behavioral supports. Many parents reported a negative impact on workforce participation in order to meet their child's needs. Parents identified needs that would benefit their autistic children and families, such as accessible support groups to obtain relevant information. To our knowledge, this is the first systematic study exploring the experiences of Ethiopian and Eritrean families raising autistic children in the US. We discuss implications of our findings and recommendations for culturally responsive care.
Journal of autism and developmental disorders, 2024 · doi:10.1037/ort0000249