Latina Mothers and ASD Diagnosis

Jan Blacher et al have an article in Research in Autism Spectrum Disorders titled "In the Eye of the Beholder: Reports of Autism Symptoms by Anglo and Latino Mothers."  The abstract:

Latino children with autism spectrum disorder (ASD) are under-identified and under-diagnosed. Children suspected of ASD (28 Anglo and 55 Latino) were assessed via the Autism Diagnostic Observation Schedule (ADOS) and the mother Intake Form. A sub-sample of 40 children were assessed with the Autism Disagnostic Interview-Revised (ADI-R). The primary objective was to determine whether Anglo and Latino mothers differed in their symptom reports, and whether their children differed in the professional classifications. Anglo mothers reported significantly more developmental concerns and ASD symptoms than Latino mothers, yet Latino children meeting diagnostic criteria for autism on the ADOS obtained higher ASD severity scores than Anglo children. The authors set forth three possible explanations for such discrepancies between parents and professionals in perceptions and reporting of autism symptoms: (1) Latino mothers are not as aware of the symptoms, and thus do not report them; and (2) Latino mothers are aware of general developmental delay but not as concerned as Anglo mothers until social communication deficits become more apparent. (3) Latino mothers’ parenting practices and cultural beliefs about child-rearing might mask both the ASD symptomatology exhibited by their children and their recognition of it.

Screening Latino Children

A release from Oregon Health & Science University:

Clinicians have long known that early identification of an autism spectrum disorder (ASD) improves a child’s long-term health outcome as well as the family’s ability to cope with disease. But Latino children are diagnosed with ASDs less often and later — an average of 2.5 years later — than white children and have more severe symptoms at the time of diagnosis. The reasons behind these disparities have been poorly understood, and no studies have investigated pediatricians’ perspectives on this inequity — until now.

A new study published online in the journal Pediatrics reveals that multiple factors in the primary care setting may contribute to delayed autism spectrum diagnosis for Latinos, including the perception that Latino parents are less knowledgeable about ASDs than white parents.

The study’s lead investigator, Katherine E. Zuckerman, M.D., M.P.H., an assistant professor of pediatrics at Doernbecher Children’s Hospital, Oregon Health & Science University, surmised that given their regular and early contact with families, primary care pediatricians play a critical role in early ASD identification. To test her theory, Zuckerman and colleagues surveyed 297 California primary care pediatricians — California is home to the highest population of Latino children in the United Sates — and their results were surprising:

• Only 1 in 10 pediatricians surveyed was performing the recommended (American Academy of Pediatrics) developmental screenings in Spanish.
• The majority of pediatricians reported that identifying ASD risk in Spanish-speaking families was difficult.
• 3 in 4 of the pediatricians cited access, communication or cultural barriers as obstacles to early identification of ASDs.
• The most common barrier, according to the surveyed pediatricians, was a lack of access to ASD specialists.

Zuckerman and colleagues concluded that promoting language-appropriate screening, distributing culturally appropriate materials to Latino families, improving the availability of specialists, and providing physicians with support in screening and referral for Latino children could help improve early diagnosis for Latino children.

Note that most screening and diagnostic tools are proprietary, so there is a fee for using them.

Cyrstal Phend writes at MedPage Today:

Overall, 81% offered some kind of developmental screening at any routine visit for their patients. But only 30% did the general screening and 43% did autism spectrum disorder screening on the American Academy of Pediatrics-recommended schedule.

Doing both types of screening in Spanish following the guidelines was reported by only 10%.
The survey did not attempt to determine why so many providers didn't offer Spanish-language screening, but 25% of them cited limited availability of screening tools as a barrier to autism spectrum disorder diagnosis in Latino children.

"Although the Modified Checklist for Autism in Toddlers is publicly available in Spanish, most recommended developmental screening tools are not publicly available, and Spanish materials cost more," Zuckerman's group pointed out.

"Developing and promoting free or low-cost screening resources could improve early identification and reduce language-based disparities," they suggested.

Autism and Latinos

Here is a followup to a story about a Massachusetts study, the subject of a post a couple of weeks ago. Soni Sangha writes at Fox News Latino:

According to the data from 2001, white children had the highest rate of autism, 90 percent higher than Hispanic children. By 2005, there was virtually no difference.

Experts say it’s because of the improved ability to diagnose the disorder.

“This is good news that we are identifying Hispanic children with autism early,” said José Cordero, the vice chairman of the board of directors of the Autism Society.

...

While this research shows positive steps are being taken to address autism in the Latino population, how this syndrome presents itself in this ethnic community -- and what that means for patient care -- is being investigated in other studies across the country.

For example, Latino children with autism tend to score significantly lower in their cognitive tests than their white counterparts. Some research is exploring whether that difference could be attributed to bilingualism.

“In [published research] you start getting the feeling that Hispanics have more severe cognitive disabilities,” said Virginia Chaidez, who is a researcher at UC Davis who has focused on health issues in the Latino community. “But the measure being used weighs heavily on language. [Practitioners] may need to be aware that if a child is multilingual ... their cognitive abilities develop differently and they need to keep an eye on the kid a little closer.”

Regardless of the questions that remain unanswered, experts in the field of autism say there has been significant progress in care.

Cordero has been a pediatrician for 30 years. In that time things have changed greatly.

“No one wanted to speak about autism because there was very little people thought that could be done,” said Cordero. “The message today is that there is great hope. There are different strategies that can help and early recognition is crucial.”