Perkins School for the Blind Transition Center

Addressing the Needs and Challenges of Latino Children with Autism

Autism spectrum disorders cause a great deal of pain to families, individuals with this syndrome and society. However, in the past, research studies focusing on understanding autism were scarce due to a misunderstanding that autism was rare (Moldin, S.O., Rubenstein, J. L. R. (2006). This has changed within the last two decades due to the many studies focusing on autism spectrum disorders (ASDs) contributing to a better understanding of this syndrome. Most recently, research efforts have focused on providing answers and resolving the controversies surrounding environmental contributors such as the mumps-measles-rubella (MMR) vaccine (Phillips M. 2003) as possible causes of autism. Other environmental causes that have been associated with autism such as heavy metals, including lead and mercury, have prompted epidemiological surveys in a number of countries. There are no specific answers and there are many different opinions and controversies.

There have been specific controversies among those who reject and those who accept the proposition indicating that, at the moment, there is not enough evidence to accept a direct connection between exposure to heavy metals or vaccines and autism. The reality is that there is a need to conduct more studies that can help to provide the professionals and parents of children with autism with clear and useful information for the treatment of autism and related disorders since approximately one in 150 children is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. There is still a lot to learn as there are many unanswered questions in terms of whether culture and language are important components in the diagnosis and treatment of these children.

Autism spectrum disorders become evident in the first three years of life, manifesting a pattern of problems in social interactions, communication, and repetitive behaviors. The disorders of the autism spectrum are defined in different categories. The different definitions listed in the Diagnostic and Statistical Manual-IV (DSM-IV) can add confusion and can add to the difficulties experienced by many parents and professionals. There are five different disorders under the term pervasive developmental disorders (PDDs) which include different levels of difficulties in functioning. The categories of Asperger’s disorder, pervasive developmental disorder not otherwise specified (PDDNOS), Rett syndrome, and childhood disintegrative disorder (CDD) all fall under the umbrella of PDDs and create a great deal of ambiguity in the definitions of the different types of ASD. These different types of ASD’s could also include Asperger’s syndrome, atypical autism, and high functioning autism (Rutter, 2005; Wing, 2005; Klin, Sparrow, Marans, Carter, & Volkmar, 2000). Many clinicians for example do not regularly follow the decision-making steps proposed by the DSM-IV (Tryon et al., 2006). However, most studies use the definition that includes several impairments in communication and language, social interaction, play style and behavior providing at least a certain level of consistency when referring to autism.

In terms of language, most children with autism have delays in the acquisition of both receptive and expressive language. These specific language delays can at times be misunderstood in Latino children living in the United States, when their parents or the professionals assessing them assume that what appears as language delays are only difficulties related to the simultaneous exposure to Spanish and English with uneven reinforcement in the teaching of the two languages. On the other hand, the opposite is also true when a language acquisition delay that relates to autism is minimized and erroneously seen as the result of the simultaneous and unevenly reinforced exposure to two languages. Needless to say, exposure to two languages is not detrimental to a child. On the contrary, it provides an added cognitive component. But as stated, when a child’s exposure to two different languages in the home and in the school is not equally reinforced, then the end result can often be a delay in both languages.

These variables cannot only influence or confuse a professional rendering the proper diagnosis, but can create delays in starting very valuable treatment.

Children with autism have deficits in communication that are different than language difficulties related to uneven exposure to two languages and, depending on the severity of the problem, manifest different patterns such as echolalia and the use of phrases they hear from others around them in a robot like manner. These language and interactional problems do respond better to early intervention thus indicating and reinforcing the importance of earlier detection which could be crucial for children who are learning multiple languages at once.

Another variable that affects the timely diagnosis of autism is the socio-economic level of the family (Palmer, Blanchard, Jean, & Mandall, 2005). Lack of resources often prevents the parents from seeking a second opinion which by definition places many Latinos with a major disadvantage that not only influences obtaining a timely diagnosis and availing themselves of needed resources to help children with autism, but can be misleading in reporting the prevalence and incidence of autism among Latino children, which has been found to be less than among non-Latino children. The end result in underreporting autism in Latino children is a minimization of the relevance and importance of conducting further research studies crucial for obtaining a better understanding of autism within this population.

It is believed that Latino children are diagnosed much later than other children. At the moment, the literature on autism in Latino children have found that the average age in which Medicaid eligible Latino children were diagnosed is 8 years old in comparison with white children, who are often diagnosed two years earlier at age 6. Latino children with autism were diagnosed one year later than African-American children, who are diagnosed on average at more than 7 years of age (Mandell, Listerud, Levy, & Pinto-Martin, 2002).

Another important component in the possible misunderstanding and delays in the prompt diagnosis of autism in Latino Children is the traditional adherence to cultural values such as fatalism by their parents. For example, many Latino parents have a tendency to underreport symptoms. This may be due to the cultural value of fatalism, which determines one to leave things to fate rather than act promptly on a specific concern. This is particularly evident when traditional grandparents feel that things will change, or fear to admit that there is something wrong with their child, thus hoping the problem will go away (Center for Disease Control, 2006).

In terms of diagnosis, it is very important to inform parents of the specific symptoms to look for and in turn inform the child’s pediatrician. Many doctors in today’s world are very busy and unless parents are assertive and come to the office with a written list of their concerns, many relevant symptoms can long go unnoticed leading to a waste of precious time when a shared observation with the pediatrician would have been of great help. Many Latino parents have shared with me that they feel intimidated by doctors who are not personable and behave differently than what they have experienced within their culture.

Parents need to be aware of the specifics and possible manifestations of what might be normal versus what might be abnormal in their children. This is particularly difficult among very young children since problems that could fall under what is called neurodevelopmental disorders are difficult to distinguish from each other because they could be representative of other disorders (McConachie et al., 2005; Trillingsgaard, Sorensen, Nemec, & Jorgensen, 2005). But parents should insist that their child’s pediatrician or other professionals assess what they feel is not normal and should make sure that their child’s behaviors are not explained as language or culturally related. Parents should not worry that they will appear overly alarmed or fear they will upset the professionals. Similarly, providers should be aware that traditional cultural values adhered to by the parents can affect communication between them.

When the parents are well informed they can be the eyes and ears of their children’s doctors by bringing to their attention important information that can help the doctor become aware of and able to recognize autism-related symptoms much earlier in a child (Hutton & Caron, 2005). For example, among the things that parents should understand is that many children with ASDs may not show specific behaviors until they are much older; repetitive behaviors do not show until age 3 or 4. Another significant behavior to note and share with the pediatrician is the lack of initiating joint attention. The doctor might see the child on a day he or she is not feeling well and consequently appears lethargic or uninvolved, but the parent who sees the child daily knows that this behavior is usual.

It bears repetition to say that it is the parents who must inform the pediatrician, and in terms of culture and language, the better acquainted everyone is, the better it is overall. Parents must understand that once a child has been diagnosed with an autism spectrum disorder, what follows is to find out how to help the child with his or her specific deficits or weaknesses. The existing problems will require specific interventions according to their needs, which could be in the language, social or emotional areas. These interventions should include helping the parents on the management of autism in their child and offering emotional support to the entire family in a culturally and linguistically competent mode.

In terms of research efforts, there is a need to conduct research studies that provide a better understanding specific to Latino children with autism and their families. The following is recommended:

  • To better understand how the Latino population accesses help specific to ADS’s.
  • To determine whether parental cultural beliefs impact the prompt assessment of children with autism.
  • To assess whether the child rearing patterns practiced by many Latinos, particularly immigrants who are struggling economically, affect the prompt diagnosis of autism. Among these is the custom of sending children back home to be cared for by relatives who may minimize the existence of autism. Others may use folk medicines or seek a curandera before contacting a health care provider, a practice that may delay the diagnostic process.
  • To further understand whether uneven exposition to two languages or dual language acquisition in Latino children bears any relationship to the delays in the proper diagnosis of autism by professionals.
  • To determine whether Latino parents compare their child’s language delays related to autism with other children who had experienced language delays related to autism leading to a waste of precious time.
  • To refine the classification process and how treatment decisions are made once the diagnosis is made.
  • To conduct more studies that determine whether there is a misdiagnosis of autism in Latino children overall including the major Latino groups in the United States.
  • To conduct studies that offer Latino parents and professionals a better understanding of autism, including rearing practices that can confound developmental delays, such as fostering over dependence versus independence and autonomy should be a priority (Vazquez, C. 2004; Rhodes, Ochoa, & Ortiz (205).

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