Culture and Autism
When my son Ziyad was three, he began to regress in his development. He lost his ability to communicate and socialize. My little boy had stopped talking and had started to act socially detached. First, Ziyad walked on his tiptoes and swayed back and forth while staring out into space. Then he became obsessed with his toy trains. For hours he would line them up in circular and linear patterns.
I am a Filipino American who is married to a Jordanian American. When I began to notice the change in Ziyad’s behavior, many of my husband’s Jordanian family members told me, “He’s fine. Boys develop slower than girls.” My own Filipino family and I knew something was wrong. But the word for autism doesn’t even exist in either of our cultures.
Cultural traditions, values and beliefs affect how people deal with difficult situations. In our family’s struggle to deal with our son’s disorder, my husband and I have learned firsthand that culture affects the way people think about, cope with and adapt to autism.
The American Psychiatric Association defines autism as a developmental disorder that severely affects the development of a child’s social interaction and communication skills. The child has a limited range of interest and insists on sameness and repetitive, nonfunctional routines and behaviors. Symptoms of autism are usually not noticed at birth but eventually become obvious, usually during the first three years of life, when some aspect of communication development is delayed. Autism is one of the most prevalent disorders in the U.S., affecting approximately one in 150 individuals. It occurs in people of all cultures, races, religions and social classes and is more common in males than in females.
Two Different Views
The way people view autism varies from culture to culture, and even within cultures, as my husband and I discovered. In the Filipino culture, having a child with a disability is viewed in a positive way. As a Filipina mother, I accept my son as a blessing or gift from God and I am grateful that I have been found worthy of this child. My spiritual and religious beliefs strongly affect my personal view of Ziyad’s autism. I see my child as normal and a valued member of the community, regardless of his disabilities. In the Filipino culture in general, we all share a common concern for the well-being of each individual.
Some older-generation Middle Easterners, even if they now live in the United States, believe that a disability is a form of punishment for sins or perhaps the result of a curse. They often feel ashamed and embarrassed to have a child with a disability in the family. Because my husband is from the younger generation of Jordanian Americans, he understands and accepts autism as a medical disorder that affects our son. My husband’s parents and their generation are more acculturated to the U.S. than the Jordanian elders who adhere more to traditional cultural values, but they still share some of the same beliefs.
Before Ziyad was diagnosed with autism, my husband’s family demonstrated a cultural attitude that a three-year-old male who is not yet verbal may be considered normal, since boys often develop language skills later than girls. Some older-generation Jordanians may be more willing to overlook developmental differences in their children because they may be trying to avoid the stigma of autism, in which the child is perceived as imperfect or needing to be fixed. Unfortunately, this often causes delay in diagnosis until the child is of school age, preventing early intervention which is crucial to the treatment of developmental disorders.
It was difficult to make my husband’s family understand the meaning of autism. In their culture, they believe that Ziyad will eventually talk “normal,” that he will “grow out of it.” But with the help of family discussions and autism awareness campaigns in the media, they now have a better understanding of our son’s disorder. They are very supportive in his care and follow Ziyad’s structured behavior and educational plan prescribed by his child study team and pediatric developmentalist.
Cultural beliefs about family roles also play an important part in how families cope with and adapt to autism. Once Ziyad was diagnosed, I received strong support from my extended family, because the Filipino American family is built on cooperation and allegiance. We believe that individual desires are sacrificed for the benefit of the family. My family guided me to the appropriate medical and organizational resources. When difficulties arose, we pulled together and tried to work things out in a way that would benefit everyone.
Most Filipinos believe that providing care to a dependent family member is a responsibility to be shared among siblings and extended family. A child or other family member with a disability is often cared for in the family home setting instead of being sent to an institution.
Stress and Support
Regardless of one’s culture, autism causes stress to families. But here too, culture can affect the way they deal with the stress, how they view it, their ability to use problem-solving and coping skills, and their willingness to seek support from sources outside the family. Relying on their culture can either help families cope with and adapt to autism or create even more stress.
Middle Eastern families in the U.S. who experience high levels of stress in raising a child with a developmental disability may seek and need more social and organizational support to adapt to their situation. However, those Middle Easterners who believe there is a stigma attached to autism tend to access services provided by professional organizations less frequently. They are more likely to rely mainly on family, friends and religious support.
In the Filipino culture, reliance on organizational support varies according to many factors, including the amount of family support received. Filipino families may take upon themselves the responsibility of raising their autistic child with little professional support.
Our own family’s experience with autism has been a multicultural journey. With both sides of our family now having knowledge of what autism is all about, we are all working together to raise Ziyad to develop his full potential. With family cooperation and the willingness to adapt to having a child with a developmental disability as part of the family, I know Ziyad will exceed all of our expectations.