By Lynn Vigo with Blanca Fields
In our last blog, we mentioned families who might “suffer in silence” for various reasons without getting help. Some reasons for this may be cultural in nature. In my role as a family therapist, I sometimes hear families say that in their culture, there is no word for autism, and that any kind of special need is considered a blemish on the family. Some tell me that it is customary to keep challenges within the family or cultural community, never discussing them outside of these boundaries. Some families don’t take the diagnosis seriously and seem to think that their child will outgrow the challenges that autism presents.
In our desire to better understand how providers can be more helpful to families, we asked Seattle Children’s Patient Navigators for their input and were able to interview Blanca Fields about her work with Latino families who have received an autism diagnosis. Here’s what she shared with us:
From Blanca . . .
It’s important to know that autism is not well-known in the Latino community. Parents may have low health literacy to begin with, and autism is a difficult disorder to understand. Parents may not understand the underlying neurological/brain issues and instead see the issue as a behavioral one where the child is simply misbehaving. They may not understand the ups and downs that are common with behavior and ability.
Providers can help by first assessing the family’s comprehension of the diagnosis by asking them to repeat back what they’ve been told. Providers can ask if the recommendations they are making are doable for the family. However, providers should be aware that, out of respect, parents may nod and say “yes” when in reality they cannot afford the proposed therapy or do not truly understand what the treatment is supposed to do to help their child. It may be necessary to ask several times, or to really dig deeper to ascertain whether the family is truly on board or not.
Parents are receptive to and often defer to the opinion of autism experts. They don’t typically feel pushed into anything when the provider explains in concrete terms why something is recommended, such as speech therapy to help improve a child’s ability to communicate his needs and participate socially with family and friends. Some parents prefer a provider who is more prescriptive in approach so it is good to assess this individually.
Like all parents, those in the Latino community do wonder if they’ve done anything to cause their child’s autism. Mom may worry that something she ate during pregnancy caused the autism or that being frightened/startled during pregnancy did. When the parents hear about the genetics of the disorder, each may wonder which side of the family it came from and feel guilty about it, blame the other, or believe that their child’s autism is punishment for having done something bad. Parents may not voluntarily bring this up, so if providers have some sense of this, they may gently ask or point out what we do and do not know about the causes of autism.
Latino parents also have questions about their children’s futures – will my child ever talk or go to college, get married, live on his own? They may not broach this with a provider but may worry about it. Inquiring of parents if they have questions or concerns about such issues can help. For example, simply saying, “You may have questions about your child’s future and that is quite normal. I get asked that all the time. Here’s what we know about trying to predict a child’s future . . .”
It is always helpful to reinforce with parents that advocating for their children is a good thing and that they won’t be judged poorly for “making waves”. Reassuring parents that one can respectfully and collaboratively work with teachers, therapists, and providers is also helpful. In some cultures, access to care/services is associated with one’s educational and financial status; poor or poorly educated parents get less access, and asking for anything simply results in access being blocked. We need to teach Hispanic/Latino families who come from these experiences that here at Seattle Children’s we value their input and respect their views of what their children need.
It is also important for providers to be aware that not all families have access to what many routinely assume is a given, such as the internet, or if they do, language barriers exist. Very little is translated including the reports that parents are expected to use as a guideline.
The Autism Blog thanks Blanca for sharing her insights into better serving families who live with autism. If you have tips to share with parents or providers, we’d like to hear from you!