Autism is Cross-Cultural. Shouldn’t Your Assessments Be, Too?

In an autism evaluation, practitioners set out to gather as much information as possible about how someone behaves in different settings. But how humans behave can vary widely from culture to culture.

How do you know if your assessment results reflect the characteristics of autism or a difference related to someone’s background? And how can you be sure that aspects of a person’s identity aren’t subtly affecting how autism characteristics show up? 

Regilda Romero, PhD is Clinical Assistant Professor at the University of Florida’s Center for Autism and Related Disabilities. In her work, cultural considerations are an important part of autism evaluations. 

“Given the demographic shifts in the United States, there is a growing need to implement culturally informed autism assessments,” she explains. “While there are tons of diagnostic approaches available, autism assessments using a cultural lens are essential because of the strong relationship between social cognition, behavior, and culture.”

Romero recommends making your autism evaluations more culturally adaptive by working within a cross-cultural framework. 

What’s a cross-cultural assessment framework? 

A cross-cultural framework is a set of questions you can ask to make sure you’re considering every aspect of someone’s identity and lived experience. Lots of different models have been developed over the years. Some are more extensive than others, but they all cue you to consider the whole person in context.

“Cultural sensitivity in assessments, in general, is important because context matters. When I say that context matters, I am thinking about a host of multicultural factors that may be affecting the presenting problems. While we still must look at the DSM-5-TR in terms of the ASD criteria, the manner in which we view some of these symptoms may be influenced by their context,” Romero says.

Conscious use of a framework can be helpful no matter how long you’ve been practicing, but they may be especially useful early on. 

“In retrospect, I probably did not have a clear understanding of the impact of culture on assessment until I was a practicum student in San Francisco, California,” Romero recalls. “I had a first-grade Filipino patient who was referred for testing to evaluate the possibility of a learning disability. As expected, the patient’s first language was Tagalog.

“Since there were no language measures in Tagalog, I had to test limits during some of the verbal/language measures. Fortunately, I spoke Tagalog and was able to test limits using the patient’s first language. If the assessment did not include consideration of cultural and language factors, this patient would probably have been misdiagnosed as having a learning disability or intellectual disability.” 

For that reason, it's especially important to be guided by a cross-cultural framework if the test you’re using was developed by researchers from another culture.  

Which frameworks can be used in autism assessment? 

Cross-cultural frameworks can usually be applied to a variety of neuropsychological tests, including autism assessments. Here are two commonly used frameworks to consider: 

ECLECTIC Model

Developed by Daryl Fujii, the ECLECTIC framework prompts practitioners to learn about specific aspects of a person’s background early in a neuropsychological evaluation, before assessments take place (Fujii, 2018). These areas are: 

• Education and literacy 
• Culture and acculturation (which can influence the relevance of test items and the speed of test-taking) 
• Language (especially proficiency in the language of the test) 
• Economics 
• Communication (including idioms people use to communicate distress)
• Testing situation (including what a person may need to feel comfortable and motivated)
• Intelligence conceptualization
• Context of immigration (which may predict stress levels or mental health difficulties)

Researchers who used the ECLECTIC framework to guide their autism evaluations said it “results in more accurate findings and more individualized planning for the patient” (Bordes Edgar et al., 2022).  

ADDRESSING Model

Similarly, the ADDRESSING framework, developed by Pamela Hays, PhD, calls on the practitioner to consider nine elements of a person’s identity when planning assessments and interventions. This framework typically addresses whether someone is a member of a culturally dominant or minoritized group. Identity areas include:

• Age (including generational roles and responsibilities) 
• Disability (whether cognitive, physical, or psychiatric) 
• Religion and spiritual orientation 
• Ethnic and racial identities 
• Socioeconomic status (including family income, education, and occupations)
• Sexual orientation
• Indigenous heritage
• National origin (including immigrant status)
• Gender 

As with the ECLECTIC framework, the practitioner asks questions of the individual and the family to learn more about the whole person. It can also be useful for you, as the practitioner, to use the framework to identify your own cultural influences, perspectives, and potential biases. 

Which autistic behaviors are most sensitive to cultural difference?

The broad diagnostic criteria of autism are defined consistently across cultures and regions. Even so, subtle cultural differences exist in

• how autism behaviors are expressed;  
• how autistic behaviors are perceived or interpreted; 
• how much difficulty autism causes in day-to-day functioning; and 
• when, how, and where caregivers seek help (deLeeuw et al., 2020).

“Multicultural assessments are imperative in the diagnostic process as there are specific cultural factors that should be considered, such as societal perception of disabilities, cultural values, and acculturation level,” says Romero.

The list of examples below isn’t exhaustive, but it’s a good starting place for further exploration: 

• For many Chinese children, avoiding eye contact with adults is considered a mark of social respect. Some researchers have suggested that it might be more appropriate to look for atypical eye contact rather than a lack of eye contact (Hus & Segal, 2021). “To make the eye contact issue even more complicated, we must be aware that there are autistic individuals who make a concerted effort to modulate their eye contact. As such, we should not automatically assume someone is not autistic because of eye contact,” Romero points out. 

• In Ethiopia, social greetings are a matter of tradition. Greeting someone in a formal way might be considered a positive social skill, rather than a scripted or ritualized behavior or a communication deficit. In fact, when Ethiopian parents seek an autism diagnosis, social interactions are much less likely to have sparked their concern than other behaviors (Zeleke et al., 2018).

• On rating scales used to identify autism, two items (“Enjoys social occasions” and does not understand “the point of a joke”) do not predict autism as accurately among people in India as they do for those in some other locations (Carruthers et al., 2018).

• Test items that measure a person’s response to uncertainty and spontaneity don’t always predict autism well with people in Japan, studies show (Carruthers et al., 2018).

• Pointing and other communicative gestures aren’t universally carried out with the hands. In some regions, people “point” by raising, lowering, or tilting the head or face. Researchers have described these gestures as “effortful movements…produced with the apparent intention of directing attention…” (Cooperrider & Slotta, 2018).

• Imaginative or fantasy play is less common in some parts of the world than it is in the West (deLeeuw et al., 2020).

“We also must be mindful of different communication styles,” notes Romero. “There are cultures that use high-context communication, such as nonverbal gestures, body language, tones, and overall context, while others use low-context communication such as direct, specific, explicit communication.”

When it comes to unwritten rules and social norms, Romero encourages practitioners to ask, “Whose norms are we talking about?”  

What You Can Do

Adopting a cultural framework is a good place to start. In addition, you may also want to consider these strategies:  

• To increase your own understanding and boost buy-in from families, you may want to work with local partners and experts (Hoekstra et al., 2018). In some communities, partnering with faith leaders can be effective (Kang-Yi et al., 2018).

• When possible, use a care coordinator who speaks the family language. A coordinator can be a primary point of contact for the family, helping them to access care, ask and answer questions, and make community connections (Sakai et al., 2019).

• Learn what you can about the family’s perspective on autism. In some cultures, stigma can affect whether parents seek or accept a diagnosis. For example, in some Korean American communities, church leaders and childcare workers said discomfort, denial, and shame led some parents to avoid the topic of autism. For some, the stigma is rooted in the idea that a parent’s mental illness, bad genes, or “abusive caretaking” cause autism (Kang-Yi et al., 2018).

• Consider each family’s resources and support networks when planning interventions. Some caregivers may want extended family members to help with interventions so the child’s therapeutic environment is consistent. But that’s not always easy to accomplish. Educating, communicating with, and training a wider family network could help. Connecting people with support groups outside the family may be a good option for people without extended families or whose families are resistant (DuBay et al., 2018).

It’s also vital, Romero advises, to be attentive. “I believe that it is truly crucial that we listen,” she says. “As practitioners, we need to listen, acknowledge, and respect people’s lived experiences. As an allistic person, I make sure that I provide space and advocacy for autistic voices. We can claim to be experts in the DSM-5-TR and evidence-based assessments, but I believe that the best practice is the practice that begins with cultural humility.”  

Key Messages

Autism is an essential part of a person’s identity—and so is culture. To identify autism in someone whose background is different from your own, it’s vital to look carefully at areas where differences of culture could influence autistic traits. It’s also important to explore how people view autism, the diagnostic process, and intervention options. Using a cultural framework can raise your cultural awareness and help you minimize bias in your autism evaluations.

Learn More: The WPS In-Depth Guide to Autism Assessment