How Do We Better Identify and Support Minorities With Autism? An expert shares why minority and underserved communities need stepped-up autism services. Overheard
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Overheard  |   June 01, 2017
How Do We Better Identify and Support Minorities With Autism?
Author Notes
  • Betty Yu, PhD, CCC-SLP, is co-director of Project Common Ground, funded by the U.S. Department of Education to prepare SLPs to work effectively with diverse children on the autism spectrum. Yu is also president of the ASHA Asian Pacific Islander Caucus and an affiliate of ASHA Special Interest Groups 10, Issues in Higher Education; 14, Cultural and Linguistic Diversity; and 17, Global Issues in Communication Sciences and Related Disorders. bettyyu@sfsu.edu
    Betty Yu, PhD, CCC-SLP, is co-director of Project Common Ground, funded by the U.S. Department of Education to prepare SLPs to work effectively with diverse children on the autism spectrum. Yu is also president of the ASHA Asian Pacific Islander Caucus and an affiliate of ASHA Special Interest Groups 10, Issues in Higher Education; 14, Cultural and Linguistic Diversity; and 17, Global Issues in Communication Sciences and Related Disorders. bettyyu@sfsu.edu×
Article Information
Special Populations / Cultural & Linguistic Diversity / Autism Spectrum / Overheard
Overheard   |   June 01, 2017
How Do We Better Identify and Support Minorities With Autism?
The ASHA Leader, June 2017, Vol. 22, online only. doi:10.1044/leader.OV.22062017.np
The ASHA Leader, June 2017, Vol. 22, online only. doi:10.1044/leader.OV.22062017.np
Participant: What would you suggest we do to get information and awareness out about the sociocultural aspects of serving students with autism spectrum disorder (ASD) in minority groups to those practitioners and parents of very young children, in order to ensure better and more accurate early intervention?
Yu: A big gap seems to be a lack of “autism communities” in underserved communities. For example, many parents in immigrant communities are not folded into support groups when their children are diagnosed. While many parents with high socioeconomic status can find others and find information easily online, we need to bring information to the communities that are not being reached. Most importantly, some parents do not feel as if there’s a companionship with other parents to whom they can relate. I would say that’s the biggest impact we can make—to help facilitate the building of autism communities (and disability communities more generally) of parents who can relate to each other and share information.
Participant: Do you have any suggestions on how to approach different ethnic minorities that may have delayed diagnoses of children with ASD? Would you suspect that the issue deals more with unfamiliarity with availability of services or actual cultural differences that might not identify potential “red flags” of ASD (for example, eye contact and/or delayed language if “children are seen and not heard”)?
Yu: I believe the first issue is related to the second. There’s a big disparity in the degree to which exposure to issues related to autism are “casually available” in different communities. In San Francisco, for example, many people have seen movies, read books/articles, or met people on the autism spectrum, and these experiences lead to both a sense of acceptance and even embrace—and it becomes easier to recognize traits of autism. It’s also not so frightening to seek an autism diagnosis because there are other people around you who have been through it. You don’t feel alone.
The sense of loneliness is so palpable in minority communities. From sensing something’s different about your child but not knowing what to do about it, to being afraid to hear the diagnosis, to not knowing what services are available after the diagnosis. It’s interesting to see how some families are light years ahead in their knowledge of autism and of the systems that can help them. They are the ones pioneering neurodiversity. And yet, some communities are almost completely unaware of autism issues.

The sense of loneliness is so palpable in minority communities. From sensing something’s different about your child but not knowing what to do about it, to being afraid to hear the diagnosis, to not knowing what services are available after the diagnosis.

Participant: What do you think would be the most impactful first step to advocating for the need to include more diversity in autism representation? I am in a unique position as a statewide autism consultant in Missouri for public educators, so I think I could make an impact, but I know I can’t get overwhelmed by too many new items for my to-do list.
Yu: I’m sure you are in contact with many diverse families. In sharing information, please incorporate more stories of families from different economic backgrounds and different national origins—quote them, bring their photos, bring them with you when you present. Let the families who are usually invisible be seen. The biggest lesson for me has been, for these parents, not seeing other people like themselves—not hearing life stories that they relate to—makes it really hard to imagine that the solutions being offered apply to them. So many parents don’t access the help that is available.
Participant: Can you give some examples of skills that would be important to teach members of minority groups with ASD? I imagine this would depend largely on developmental level.
Yu: I believe it’s a balance of helping the clients to self-advocate and also working with people in our community to create a more supportive environment. Especially for our clients for whom it might be challenging to express their needs clearly, especially to strangers in times of distress, the work with community members on their behalf will be key. In San Francisco, we have had autism awareness and training in public libraries, with the police department, and at the airport with security personnel.
For your clients who are comfortable disclosing their disabilities, it can be a very empowering and healing process to work together to create plans for these different moments they may encounter. For some, it might require even planning out and role-playing what they might say or do. Many of the young people on the autism spectrum I’ve talked to—whether due to difficulties with perspective-taking or because they don’t yet have enough experiences to draw upon—did not realize that people would discriminate against them because of how they look. So, talking explicitly about that, in ways that are supportive and helpful, can be very powerful.

Many of the people with ASD I’ve talked to did not realize that people would discriminate against them because of how they look.

Participant: It seems that we have the criteria in the DSM-5 [Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition] to diagnose people with autism, regardless of their culture—so why would there be more white and Asian-American children diagnosed? Would this go along with access to services and medical professionals, or is ASD simply more prevalent in these populations? Is this just another area that needs more research? I go back and forth with thinking this may be similar to ADHD [attention deficit hyperactivity disorder], in that it is overdiagnosed. But then there are times I am unsure why a student I am working with is not diagnosed, as I see so many of the characteristics.
Yu: Yes, there is a pattern in the disability world of families who have more advantages (social and economic) receiving diagnoses and educational labels that are less stigmatized and better resourced, like autism. And families who have fewer social and economic advantages are more likely to get diagnoses and labels that are more highly stigmatized and that come with fewer services, like emotional disturbance. Objectively, the children may show similar symptoms, and those symptoms can be interpreted very differently.
Participant: Would teaming with community social-services agencies be an appropriate collaboration to further educate all citizens, but especially diverse communities? I know I have worked with community social workers for geriatric patients. Many police departments also have social workers who are very knowledgeable of diverse citizens.
Yu: Yes, absolutely! The more we involve families, professionals and community members from the communities we’re not reaching, the more effective we’ll be. If we’re seen as not being from the communities we’re trying to reach, the information just doesn’t get taken up in the same way, and it’s hard for people to relate—especially since the topic can be so emotional.
Participant: Are there other sociocultural issues that we need to pay more attention to, with regard to serving people on the autism spectrum?
Yu: Yes. Gender and sexual identity are issues that come up a lot for people on the spectrum, and they need urgent attention. In 2014, individuals on the autism spectrum were 7.59 times more likely to express gender variance (for example, identifying as non-gender-binary) than people not diagnosed with ASD. So many of the people I’ve talked to who identify as autistic and racial/ethnic minorities also identify as gender nonconforming. And they feel even more isolated as a result of these intersectional experiences that are usually not recognized.
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June 2017
Volume 22, Issue 6