In recent years, the number of individuals diagnosed with autism spectrum disorders (ASD) has risen (Lajonchere, Wheeler, Valente, Kreutzer, Munson, Narayanan, Kazemzadah, Cruz, Martinez, Schrager, Schweitzer, Chlovski, Hwang, 2016). Due to this rise in diagnoses, much attention has been given to the services that children receive in order to improve quality of life. In addition to the increase in overall diagnoses of ASD, the increase in prevalence of ASD in the United States is most notable within minorities (Jamison, Fourie, Siper, Trelles, George-Jones, Buxbaum Grice, Krata, Holl, Shaoul, Hernandez, Mitchell, KcKay, Buxbaum, Kolevzon, 2017).
ASD is diagnosed by the criteria listed in the 5th edition of the Diagnostic and Statistical Manual (DSM-5). The criteria listed in the DSM-5 do not mention race or culture pertaining to ASD, but rather list the characteristics of ASD, so as to guide diagnoses (American Psychiatric Association, 2013). This being said, ASD affects individuals from all races and ethnicities, however studies have shown that the rates of diagnoses differ for Black and Hispanic children (Jamison, et.
al., 2017). Merriam-Webster online dictionary (2018) defines Hispanic as “of, relating to, or being a person of Latin American descent living in the United States” and Latino as “a person of Latin American origin living in the United States.” The terms “Latino” and “Hispanic” will be used interchangeably to refer to individuals of Latin-American descent who are living in the United States.
As stated, ASD is not specific to any particular race, however according to Magaña & Smith (2013), research has shown that “Latinos are less likely to be diagnosed with autism than their non-Latino counterparts.
” This does not necessarily mean that Latinos do not display characteristics of ASD, but they are less likely to receive an official diagnosis than White children who display the same characteristics of ASD. Other studies have found that differences exist between the services that non-Latino White children receive in comparison to the services that Latino children receive in order to treat ASD characteristic (Magaña, Lopez, Aguinaga, & Morton, 2013).
Possible reasons for this difference in diagnoses and the services received may pertain to the tools that are used to diagnose ASD. While the criteria for diagnosis of ASD remains the same across individuals of all races, some cultures may alter how the criteria is understood and applied to the child being diagnosed. A study by Magaña & Smith (2013) took into consideration the scores of Latino adolescents and non-Latino Whites pertaining to the Autism Diagnostic Interview-Revised (ADI-R). The study established a difference in the restrictive, repetitive behaviors of the two groups, furthermore indicating that Latinos with ASD demonstrated less of these behaviors than Whites with ASD. The difference in restricted repetitive behaviors between White children with ASD and Latino children with ASD may have been partly attributed to culture, however more research in this area is necessary to establish a functional relation (Magaña & Smith, 2013). This being said, it is possible that some stereotypic behaviors may be deemed as less socially appropriate in White cultures than in Latino cultures, ultimately leading to an increase in parents’ concern.
A study by Magaña, Lopez, Aguinaga, & Morton (2013) suggested that, on average, Latino children with ASD are diagnosed approximately one year later than White children with ASD. Additionally, Latino children with ASD have substantially more unmet needs in regards to services than White children with ASD (Magaña, Parish, & Son, 2016). Lack of education on ASD itself as well as the services available to families may be another factor contributing to the difference in diagnoses and services provided between Latinos and Whites. This lack of education can be partially attributed to a lack of resources on ASD available for Hispanics (Lajonchere, et. al, 2016). In addition to a lack of educational resources available, there are various stressors present in a family of a child with ASD, such as excessive emotional and financial burdens. These stressors, specifically in the Hispanic communities, correlate with a lack of mental health services available, which ultimately can lead to a lower quality of life (Jamison, et. al., 2017).
While the inability to access educational materials alone is a barrier for Hispanic families, locating and accessing these materials in Spanish is even more difficult. In assessing some of the struggles that Hispanic families face, one study worked to provide more access to research articles on ASD that were available in both English and Spanish. According to Lajonchere, et. al. (2016), when Hispanic families were presented with research articles on ASD, 90% of families requested more research articles within 5 months of the initial presentation of the articles. This strengthens the theory that Hispanic populations are lacking the necessary resources to understand ASD, and ultimately understand the services that are available to their children.
Jamison, et. al. (2017) studied the use of a family peer advocate (FPA) model to assist families of those with ASD. The FPA is a relatively low-budget model that connects families with other families in similar situations so as to allow for networking and sharing similar experiences. The FPA also helps provide families with information regarding potential services and resources on how to access those services. The results of the use of an FPA display a strong functional relation between the FPA and understanding of ASD. The use of the FPA also had a strong correlation with the reduction of stress levels in families of those with ASD. According to the study, the reduction of stress allowed for more cohesive parent-child relationships, which can lead to a stronger, healthier home life (Jamison, et. al., 2017).
While providing access to literature on ASD and networking for parents are not equivalent to providing actual services to the child, these provisions are able to serve a number of purposes. They may act as a foundation for the parents to better understand and strengthen their relationship with their child. These interventions may also serve as a gateway for parents to know their rights and their child’s rights under the IDEA act. Finally, these resources may help give the families a starting point of where to begin looking for services. For example, perhaps a child will be in need of speech therapy, but not occupational therapy. A parent will likely be able to better assess their child’s needs when provided with the appropriate literature and network of individuals who have been in similar situations.
In summary, Latino communities currently have a disadvantage when it comes to understanding ASD and the needs associated with it. Providing families with more research in their native language can substantially help educate them on the diagnosis. This knowledge can lead to the families getting the services their child needs. Connecting families with other families of those with ASD as well as local service providers equips the families to seek out the services that will most benefit their child. It is unfortunate that such a need has risen within a minority group, but the future appears hopeful that between more access to literature on ASD and the use of FPA’s the need will decrease and families will be able to confidently know how to best serve their child with ASD.