OARacle Newsletter

For Latinx families in the United States, healthcare services are not always easy to navigate for reasons beyond mere language barriers. The challenges encountered while pursuing health services for their autistic loved one can escape even the most culturally competent healthcare settings. Susana, the mother of an autistic nonspeaking 6-year-old boy says it best: “When we go to the doctor, I do not have a problem believing they are health experts and may also know a lot about the autism diagnosis. However, very often I feel as if it does not matter to them as much to become experts in knowing my son, Carlos.”

Susana is on point—trust is a highly held value in Latinx culture. She added: “Growing up, I was told that there are three people that you can always trust and to whom you should go to for advice and guidance: the priest, the teacher, and the doctor.” Nonetheless, research has shown that some Latinx families develop mistrust in healthcare providers after the autism diagnosis, especially if getting appropriate care for other health conditions is delayed or the advice offered by the clinicians seems too generic or rushed.

As a trained medical professional, I am familiar with the constraints of clinical encounters such as the 15-minute visit allotments and the endless burden of documentation. A little bit of empathy goes a long way, however, and it helps level the playing field for successful communication, not only to convey your diagnostic impression and recommendations, but also to invite the patients to share more information or ask important questions. A useful strategy I share with healthcare providers to build and strengthen trust with the Latinx families they encounter is something I like to call “blatant empathy”—show curiosity about the patients’ lives, listen intently, and show that you can relate to their experiences (“Oh, my son is learning how to ride a bike, too!”).

Another useful tip is to be mindful that the Latinx culture is not a monolith: Spanish is the national language in 21 countries, most in Latin America, but also across the Atlantic, in Spain and Equatorial Guinea in Africa. In addition, some countries with a Latinx cultural heritage are not Spanish-speaking, like Brazil and Haiti. Because of this, although families of Latinx origin or heritage may share some cultural traits and history, these often are expressed in widely different ways.

While I am a scientist and researcher, I am also the proud mother of two boys, one of whom is autistic. Many times I have been on the patient side of clinical interactions, and I have had to raise concerns, ask questions, request clarifications, and most of all, advocate for my sons’ needs. I encourage other Latinx parents to become more actively involved in the decision-making processes and not solely rely on what is initially presented to you. Health providers will come and go—the great ones, and the not-so-great ones—but, as parents, we are by our children’s side for the long run. My advice is to not only search for providers who will provide translation when you need it, but will also respect and cherish your culture, which in many cases includes strong family bonds with nuclear and extended family.

Finally, I would like to shed light on two considerations for parents and healthcare providers alike. First, although autism is a condition that has behavioral manifestations, we can all agree that it is not caused by differences in parenting style. Understanding and respecting a diversity of parenting styles is crucial to sustaining a robust relationship between healthcare providers and the Latinx families they serve. Second, autism is a diagnosis that still carries a lot of stigma within the Latinx community. It is important that healthcare providers guide all processes for Latinx families with an autistic loved one in a way that emphasizes the challenges and the many strengths that families can capitalize on. This applies not only to the autistic person’s strengths and skills, but also to the unique support that family and community can provide.

As Latinx parents, the love and unconditional support for our children and the hopes we have for their future will help dissipate autism myths and stigma and also help other families to find their own voice along the way.

Dr. Georgina Perez Liz is a physician with graduate studies in public health and global health. As a research associate in the Early Detection and Intervention Program at the AJ Drexel Autism Institute, Drexel University, Dr. Perez studies different aspects of early identification of children with high likelihood of autism, how co-occurring conditions may challenge diagnosis, and more recently, parent-mediated interventions for autism. She has done extensive work to help strengthen autism research capacity with community agencies in Mexico. She is also a member of the Latin American Autism Research Network, which conducts studies across nine countries.