Engaging Latino Families: Learning from an Autism Screening Program at a Community Based Clinic

New estimates from The Centers for Disease Control suggest that 1 in 88 children have an Autism Spectrum Disorder (ASD).

However, there are lower rates of Latino children diagnosed with an ASD and they are also often diagnosed at a later age than non-Latino children.

In this article written for Colorín Colorado, Keri Linas, Ph.D, Psy.D and Sandra Soto, BSN, MPH write about a partnership between Georgetown University and a local community outpatient care clinic to help improve the early identification of autism in young Latino children. Keri and Sandra share lessons learned through the project that are relevant to school settings, such as effective communication approaches and building strong relationships with diverse families. They also provide discussion questions for educators at the end of the article.

Clinic Scenario

Dr. Smith suspects that this child has autism. However, she is perplexed about why the mother doesn't follow up on her advice and recommendations for treatment. Understanding the reasons for this kind of miscommunication, which happens frequently in clinical settings, is the purpose of this article. First, however, let's start with some background information on autism and diagnosis rates in Latino children.

Overview

Perhaps you have had a child with Autism in your class or have observed a child and wondered if there was something a little "off" in the way he interacted with friends. Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder with three defining features: impairments in social interaction, impairments in verbal and non-verbal communication, and restricted and repetitive patterns of behaviors. The spectrum of disorders includes Autism, Asperger Syndrome, and a related disorder called pervasive developmental disorder.

Autism and Latinos

New estimates out this month from The Centers for Disease Control suggest that 1 in 88 children have an Autism Spectrum Disorder. However, there are lower rates of Latino children diagnosed with an ASD and they are also often diagnosed at a later age than non-Latino children (Mandell, et al., 2009).

To help improve the early identification of ASD in young Latino children, the Georgetown University Center for Child and Human Development partnered with Unity Health, a community outpatient care clinic in Washington, DC that serves mostly Latino families from a variety of cultures. We created a program for pediatricians to identify children with or at risk for an ASD. We have just started the program and recently had the opportunity to speak with dozens of families about how they would like to interact with doctors when they or the doctor has a concern about the child's development.

We learned quite a bit from the families during these sessions. While these lessons were learned in a clinic setting between families and medical staff, we think you will find they are also applicable in the school setting between families and school personnel.

Lessons Learned

Widen your lens to include the parent in your focus rather than only focusing in on the child

Pediatricians (and teachers) traditionally view the child as the identified patient or student. However, the child is embedded in a network of family relationships, which has consequences on his/her functioning. Through a restricted child-focused lens, efforts to improve the child's development, learning, or behavior can be unsuccessful because they fail to recognize that the child's growth is linked to his/her family. Establishing a relationship with the parent can therefore be as important as the content of the interaction. In our discussion with families, parents told us that if the doctor does not specifically ask how the parent is doing or feeling, the parent will be less inclined to ask questions or follow through on the doctor's recommendations.

Similar to what we heard, a recent Johns Hopkins University study on Latina mothers' thoughts about their child's health care in community clinics, suggests their top concern is having a strong and respectful relationship with the provider. Mothers said they were more likely to agree with a diagnosis and treatment if they liked their provider. They described their "ideal provider as warm, caring, and friendly, one who didn't rush through the visit."

The bottom line is that pediatricians and teachers have a lot of expertise in their field to share with parents, yet their message will be heard only if parents feel pediatricians/teachers are available to listen and are able to demonstrate care and concern for parents' individual needs.

Suggestions

Here are some ways parents suggested could facilitate their relationship with medical staff, which ultimately impacts the relationship between the provider (or teacher) and child:

  • Ask parents, "How are you doing?" or "What is new in your life?" When you start with these types of questions, parents feel trust and are more willing and likely to provide information and ask questions.
  • Maintain a warm, flexible and familial engagement style.
    • Keep yourself open to having a discussion that is slightly off topic and may begin with the parent's response to your questions from above.
    • Don't be all business all the time — parents will feel more comfortable and open to your opinion and suggestions if you display a more relaxed attitude.
  • First impressions will have a trickledown effect on the child.
    • The front office is the port of entry for the family. If a positive relationship is created here, parents will more likely be inspired to seek a relationship with the clinician or teacher.
    • However, if parents are poorly received, they may interpret it as a bias against their culture, lower income families, or those new to the U.S. They may even feel it is due to stigma in response to how their child has behaved (e.g., if the child is constantly sent to the office for bad behavior). As a result, parents may be less likely to make an effort to connect with the clinician or teacher.

What and how families communicate are impacted by family culture and their broader ethnic culture

Autism Information for Parents

Take a look at our bilingual autism resources for families.

If you have a concern about a student's development or behavior but the parent does not share your concern, refrain from making assumptions about the parent's willingness to hear feedback about his/her child. When we listened to parents, they explained that they did not have concerns about their child's development when family members suggested that they themselves were the same way as a child. Therefore, they did not view these behaviors as problems in their child's development. Consider the following:

  • Parents may not communicate concerns about their child due to lack of knowledge about child development patterns or milestones.
  • Parents may have a different perspective on development. They may focus on physical development and may not consider cognitive, language or social development. Or, they might choose to speak about the non-physical aspects of development only with individuals they know well and trust.
  • Parents may not recognize a behavior as a concern because the behavior is within the family or extended cultural expectation (for example: pointing). Or, they may have differing views on what is "normal" development and when or whether there is a concern.
  • Parents may have fear or a taboo about the potential problem. Problems in development, like autism, may be seen as the fault of the parent or family.
  • Parents may not know how to bring up concerns. In many cultures, including Latino cultures, parents regard doctors and teachers as authority figures who are to be respected. Therefore, if these individuals do not bring up an issue about the child, parents may not either.
  • Language barriers may exist with any parent where English is the second language. Ask families which language they prefer to communicate in, and keep in mind that their preference may change depending on the topic.

If parents are hesitant to talk about their child's development, consider approaching the topic in the same sensitive manner that you would with other concerns that are difficult to discuss with parents. For example, you could say "I am concerned that Margarita may be having difficulties learning and growing in the classroom and I want to find the best strategies to support her." Remember, parents will probably only retain three pieces of information at a time — when you have this discussion, try to include at least one positive statement about the child.

Families need your support navigating systems

A school system, similar to a medical system, is a culture to itself — it has its own rules, expectations, and norms. Parents from diverse cultures are trying to understand this smaller system while simultaneously learning the broader American culture. Navigating the school system may appear obvious to the teacher who is a product and creator of the system, but it may not be obvious for parents. For instance, in our program, parents told us they felt intimidated and didn't even know where to start — what questions to ask, who to contact, and what to expect.

Consider the following:

  • Parents may need you to provide extra support to connect to the school and related systems. Be willing to offer parents specific contacts to services within your school and community (e.g. the name and direct phone number to the school case manager, nurse, community agency, etc.) rather than a general resource because parents are more likely to follow through if they have a direct person referred by someone they trust, like the teacher.
  • If available, connect parents to another parent who has had previous experience navigating through the school and related systems.
  • Do not assume parents know or play by the same cultural rules as parents from the dominant culture. These parents may be less likely to ask for help because they may feel uncomfortable asking or they don't know who to ask.

Conclusions

In summary, we offer these closing thoughts:

  • Build relationships with parents when you want to address concerns about their child.
  • Don't make assumptions about what parents are open to or willing to discuss about their child.
  • Anticipate providing families additional support with navigating school and related systems.

Discussion Questions

  • Having read the article, what are some possible reasons for the miscommunication described in the scenario between Dr. Smith and the Spanish-speaking mother?
  • What are some parallels that you see between communicating with parents in a clinical/medical setting and in a school setting?
  • Are there suggestions or ideas in this article that you can apply in your school environment?
  • Are there ways that the special education team or other educators in your school might also be able to use this information?
  • What might be some effective ways to share information about autism or other health topics with culturally diverse families?

About the Authors

Georgetown University Center for Child and Human Development

Keri Linas

Keri Linas is a clinical psychologist and the project coordinator for the program entitled: " Improved Early Identification of Autism in young Latino Children" funded by the Maternal Child Health Bureau of the Health Resources and Services Administration. It is a collaborative program between the Georgetown University Center for Child and Human Development and Unity Health Care in Washington, DC.

Sandra Soto

Sandra Soto is a registered nurse (RN) with a masters degree in public health from the George Washington University. She is currently the Qualitative Research Coordinator for the Improved Early Identification of Autism in Latino Children research study at the Georgetown University Center for Child and Human Development. The study's mission is to enhance identification and successful referral for Latino children with autism who visit a primarily Latino-serving community clinic in the District of Columbia.

This study (project) is funded by grant, R40 MC 20171, through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program.

References

Mandell, D.S., Wiggins, L.D., Carpenter, L.A., Daniels, J. DiGuiseppi, C., Durking, M.S., Giarelli, E., Morrier, M.J., Nicholas, J.S., Pinto-Martin, J.A., Shattuck, P.T., Thomas, K.C., Yeargin-Allsop, M., & Kirby, R.S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493-501.

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