Disparities Experienced By Hispanic Families Navigating Autism
Posted on 09/28/20 in Diversity, Equity and Inclusion by Milestones
There are many disparities in getting an ASD diagnosis for Hispanic families. In a study put out by the NIH the stressors included: “stress of diagnostic process,” “parent knowledge about ASD,” and “understanding medical system.” Milestones spoke to a few Hispanic parents and professionals here in Northeast Ohio about the barriers and challenges they experienced themselves when learning about ASD, seeking a diagnosis and receiving treatment for their loved ones. They also shared how we can continue to advocate and provide support for families and individuals.
Are there cultural differences that impact your ability to access services or feel a part of the group, like an ASD support group?
Ruth G. (parent)
In my case, they exist because of the Spanish language since it prevents me from participating in different groups or social events related to autism and not being able to access exchanges of ideas, knowledge and experiences lived with our children with ASD and not being able to learn from them.
Michael L. (parent)
The biggest cultural difference is the language barrier. It is one thing to simply translate what your group or doctor is saying to you, but to understand the information/story being given to you is entirely different. It’s not that we are uneducated as a community, but in terms of ASD we are so far behind the eight ball in terms of information in an arena that’s already behind.
Ivette Sarkar (parent & professional)
In some cases, the Spanish-speaking community is not aware of the resources and services that are available to them including how to locate an appropriate support group. Many would prefer to see a professional that speaks their language. Some are private people who share little information about themselves or their children which can make communication and accessing resources more challenging.
If you or other family members are primarily Spanish speakers, how does communication with school or other providers go, and what advice do you have for professionals on increasing helpful communication tools?
At school and in many organizations, we have many language challenges, most of them do not have bilingual people and they have to find or hire translators, or in some cases they cannot assist us. One of my tips would be to increase people trained in this work (and to) have Spanish as one of the main languages to communicate with parents.
I’ve been told that we, as parents, grandparents, aunts and uncles, can request a translator. I am unfamiliar with what type of translator is provided, but again if someone who is simply translating the words, that doesn’t necessarily mean the information is being relayed properly or in a way that is to be understood. Again, I haven’t experienced this first hand, but questions I would have, would be...”Is this translator simply meeting a request to have a translator?” or “is this person truly trying to help us understand?” “Will we be able to have some form of meeting after with someone who is qualified to make sure we understand what information we were just given?” Things like that.
Most Spanish-speaking families with limited English proficiency struggle in a normal school year to support their children's learning at home making them more susceptible to falling behind and having achievement gaps in comparison to same aged peers without language barriers. These same students are also at risk of graduating with limited proficiency in both Spanish and English languages.
Currently, the COVID-19 pandemic has created another layer of challenges for non-English-speaking households. Many have not been trained on how to support their kids learning in the absence of teachers or on how to use Zoom, Google or other virtual platforms. Some do not have computers or reliable internet connection necessary to learn at home which makes for a more vulnerable situation for everyone.
A good plan of action is to provide training and guidance for these families. Communicate daily or weekly to provide support and address parent concerns. Develop a frequent progress monitoring plan.
How do we promote awareness, action and cultural change to support the Hispanic community affected by autism?
Promoting more informational resources, social events, and trainings to improve knowledge, skills and strategies to help our children with ASD in the Spanish language.
I think getting information out there is so crucial. Even more importantly than that, that is help for a Spanish-speaking family. Simple things like having a proverbial, “Se Habla Espanol” or “We speak Spanish” signs alleviate major concerns for families and individuals. Give the information clearly, instead of waiting for someone to ask. I think fear, embarrassment, even shame deters a lot of families from getting help. Not knowing whether or not someone speaks Spanish is almost an unintentional enabler not to try to get help. “If they don’t speak Spanish they can’t help me” mentality.
In my opinion, communication is the greatest barrier for the Hispanic community especially in having meaningful discussions with school teachers or other professionals as well as having access to resources and advocating on behalf of their loved ones.
In order to level the field, all documents, tests and applications should be translated in their native language. This would allow the parent or caregiver to answer questions independently and not have to share private or sensitive information with a third party. When necessary, utilizing a translator or a bilingual employee that is both neutral and proficient in both languages is beneficial. Although this may initially create more expenses for businesses and non-profit organizations it should pay off and benefit everyone in the long run.
Since autism can be a complex disorder and navigating the process can be equally challenging, providing the hispanic community with education and resources in their native language is essential in achieving positive outcomes. Hispanic families living in the USA may be separated from their family and friends which is the reason that a support group would allow them to unite with others and share ideas.
Need support? Milestones can help. Call 216.464.7600 ext.5 to speak with a Spanish-speaking staff member.