Cultural Considerations in Autism Diagnosis
Tags: Resource Guide
By: Elaine Gabovitch, MPA
We know it’s important to promote early identification of autism spectrum disorder. What are some ways to approach this across culturally diverse populations?
Last year, I had the opportunity to lead an interdisciplinary project team in the creation of a screening kit named Considering Culture in Autism Screening. Our team included pediatricians, a public health director, and university faculty from the Massachusetts Act Early team. The project addressed ways to improve cultural and linguistic equity in identifying children at risk for autism spectrum disorders (ASD) and other developmental disorders.
The free screening kit, available at www.MAActEarly.org, offers guidance on how to deliver culturally competent autism screening to children from families whose primary language is not English, as well as how to refer children to developmental specialists for further evaluation when there are concerns about development.
Our team received invaluable guidance from the cultural liaisons at four Boston community health centers who serve Chinese, Haitian-Creole, Spanish, and Vietnamese speaking families. Here’s what we learned:
Screening for ASD is Variable
Children from non-English-speaking families are less likely to be identified for screening and evaluation, and are often diagnosed at later ages than children whose parents are proficient in English. To ensure that these children have access to the early screening and the intensive interventions that predict better long-term outcomes, clinicians need to understand the important cultural nuances and proceed in that context.
Concepts such as culturally valued behaviors, stigma attached to disability, and the use of language can create barriers to identification and treatment. On top of this, providers may lack the knowledge and skills needed to discuss developmental concerns with families from different cultural backgrounds.
Effective Communication is Paramount
Building a relationship by communicating effectively with parents is critically important since ASD screening and diagnosis is largely dependent on parental reporting of the child’s developmental and behavioral history. The alliance between families and providers is key to supporting the child’s progress. But for parents who have limited English proficiency or who lack the knowledge and skills to access systems of care successfully, obtaining help for a child in need can be an overwhelming and intimidating experience. All of these reasons make it essential for providers to use culturally competent practices in identifying early signs of ASD and making appropriate referrals for diagnosis and treatment.
Approaching early identification of ASD across cultures
- Screening for ASDs is the first step in the process of identification. It is especially critical for clinicians to understand this when working with families from diverse backgrounds, particularly when their primary language is not English or when they have different views on child development since it may require more persistent follow up in such circumstances to keep families engaged.
- The concepts of screening, early identification and early intervention may be unfamiliar for families from diverse backgrounds. For many families, these concepts are culturally bound and they may perceive that their children will be stigmatized in their communities by participating in these practices.
- Remember that in some families, questions about a child’s skills may go unanswered since they may feel intrusive. Some families may view screening as “looking for trouble” or feel that things clinicians think are problems are not an issue. Still for other families, their responses may shed light on their ability, background or resources. Thus, communicating slowly and clearly while listening carefully and fully engaging families produces the best results.
- It can take multiple conversations, even several visits, to discuss concerns with families and work toward referral.
It is equally important to ask questions about the family’s understanding of and expectations for child development. This could provide a wealth of information and set the stage for effective communication about child development in general and their child’s development specifically.
It’s More than Translation
- Consider whether parents understand the screening questions in addition to having other possible primary language barriers because terms used in screening tools may have somewhat different meanings once translated, Consider literacy level, as well as language. Interpreters (who are proficient in the language) and cultural liaisons (who are proficient in distinct cultural issues) can assist greatly since written screening tools may be difficult for some families to complete, and for clinicians to interpret. When working with families from diverse backgrounds, having thorough and clear conversations about the screening questions is critical to being certain that families understand and answer questions accurately.
It is important to consider that some terms may not exist in a target language. In addition to translation, it may be equally important to develop new materials in the target language as well.
- Communicating concerns about a child’s development in a different language or across cultures can sometimes be tricky. While having a general understanding about the cultural group you serve may help in anticipating particular reactions or issues, clinicians must avoid stereotyping. Each family is distinct, irrespective of racial or cultural identity. When discussing screening concerns, miscommunication can often be avoided by starting with the families’ perspective.
Ask questions as an invitation for parents to tell you what they are thinking, such as:
- “Do you have any concerns about your child’s development?”
- “What do you think is the cause of this concern?”
Clinicians should express their concerns only after the family’s perspective has been shared, but they should also be mindful that families may not see a concern, especially if they are first time parents. Targeted questions about the child’s behavior, communication, play, and interactions with other children and adults help clinicians probe further. When the issue is a failed or positive screening test, it is important to emphasize that it identifies only that a child is at higher risk for ASDs. It is not a diagnosis. Be careful about using the word “autism” if families do not ask you about it specifically. If they do, it is critical to ask:
- “What have you heard about autism?"
- “What does the term “autism” mean to you?”
Reassure parents that when a child has problems with talking, interacting, or behavior, there are many things that can help a young child develop these skills.
Don’t Go It Alone
- Enlist the collaboration of interpreters, cultural liaisons, nurses, community agencies, social workers, or others in supporting the family through the referral process. Identifying an available person in your practice or community with cultural and linguistic knowledge, and professional experience in ASDs, can make a positive difference to families in a successful identification and intervention process.
- Discuss the family’s comfort with speaking and understanding English and offer an in-person interpreter to assist at all visits, making sure that the interpreter is available free of charge.
- Schedule a follow up visit for one or two weeks after the specialty evaluation to talk through what happened at the visit.
Reinforce that such an assessment is part of standard care since the concepts of screening, early identification and early intervention may be unfamiliar for families from diverse backgrounds. For many families, these concepts are culturally bound and they may perceive that their children will be stigmatized in their communities by participating in these practices.
These are just a few of the lessons learned from the Considering Culture in Autism Screening kit project. Pediatric providers can to visit www.MAActEarly.org to download the entire screening kit and related materials that are available free online.
The kit includes:
- an ASD screening guide that shares cultural competence practice tips for clinicians and written case vignettes to illustrate cultural norms related to screening for each featured culture
- the M-CHAT, a leading validated ASD screening tool available at no cost in English, Chinese, Haitian-Creole, Spanish, and Vietnamese translations as well as its scoring guide and follow-up interview
- local and national autism resource/referral information
an assortment of CDC “Learn the Signs. Act Early.” materials for use in practice.
Elaine Gabovitch, MPA is the Director of Family & Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health. As the parent of a son with ASD, she knows the value that early screening and detection holds for children with ASD and their families. She currently serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. Ms. Gabovitch also participates on numerous community-based efforts including the MA Governor’s Autism Commission Transition Subcommittee, MA EEC’s Help Me Grow Advisory Board, the City of Boston’s Autism Task Force, Mass Advocates for Children’s Transition Assessment Task Force, AANE’s Transition Roundtable, BUSPH’s Maternal and Child Health program, and UMass Amherst’s Communication Disorders Advisory Board, among others.
The mission of MA Act Early is to educate parents and professionals in Massachusetts about healthy childhood development, the importance of routine developmental screening, early warning signs of ASD and other developmental disorders, and the necessity of timely referral for a full evaluation and early intervention services whenever there is a concern. The MA Act Early state team is comprised of 40-plus members representing the fields of health care, public health, early intervention, early childhood and elementary education, special education, and family advocacy in a collective impact approach.
Considering Culture in Autism Screening kit project team:
Stephanie Blenner, MD, Boston Medical Center, Boston MA
Kathleen Braden, MD, UMMS/Shriver Center LEND Program, Waltham, MA
Roula Choueiri, MD, Tufts Medical Center, Floating Hospital for Children, Boston, MA
Elaine Gabovitch, MPA, UMMS/Shriver Center LEND Program, Waltham, MA
David Helm, PhD, ICI/Children’s Hospital LEND Program, Boston, MA
Tracy Osbahr, MA, CCC-SLP, MA Department of Public Health, Boston, MA
Nicole Prudent, MD, Boston Medical Center, Boston, MA
Alison Schonwald, MD, Boston Children’s Hospital, Boston, MA
Jason Travers, PhD, University of Amherst, Amherst, MA