Challenging Dogma


...Using social sciences to improve the practice of public health

Monday, April 30, 2007

The Public Health Campaign Surrounding Childhood Autism: A Critique-Laney Eisenberg

In recent years Autism Spectrum Disorder has become a widely publicized issue, as a result of the drastic increase in its prevalence throughout the country. Childhood autism, in particular, has been the focus of a vigorous public health campaign, with efforts from government and non-profit groups to educate the public regarding symptoms, treatments, and possible causes. Currently the Center for Disease Control estimates that 1 out of 150 children are diagnosed with autism each year, making it the country’s fastest -growing disability (1). Conversely, Down Syndrome has an occurrence of 1 in 800, and juvenile diabetes occurs in 1 in 400-500 children (2). In previous decades the prevalence of autism was estimated as 4-5 per 10,000 children; in the past 10-12 years alone, autism rates have increased by 172% (3). Thus, it is clear that this disorder is a pressing public health concern, as parents of affected children must be made aware of available treatments and services. Information regarding how, and from whom, to seek help, as well as resources for emotional support, are critically important for parents whose children have received a diagnosis.

While the aforementioned groups have enacted media campaigns that have successfully familiarized the public with Autism Spectrum Disorder, the focus of their recommendations has often been flawed. This paper examines the guidelines put forth by institutions such as the Center for Disease Control, National Institutes of Health, and Autism Speaks (an advocacy group for families affected by Autistic Spectrum Disorder), outlining their position on the most effective course of action for families affected by childhood autism. All autism awareness groups are in agreement that intensive early intervention is the optimal response when a child or toddler receives a diagnosis. Currently, a standard treatment plan includes several hours per day of home-based behavioral therapy. The public health community must refocus their priorities in order to better serve the needs of families struggling with this disorder. Treatment plans that address the needs of the child and the family are essential, as is improved access to services for low socioeconomic status consumers. Additionally, the media campaign around childhood autism must be carefully re-examined in order to avoid inadvertent perpetuation of the stigma associated with cognitive disability.

Treatment Methods

The public health campaign around Autistic Spectrum Disorder includes treatment plans that are designed to lessen the symptoms of autism. Treatment is considered effective when the affected child comes to resemble a “typical child” as closely as possible, in terms of linguistic ability, motor skills, and social behavior. Most public health initiatives acknowledge that there are a number of possible treatment approaches for autistic children; however, the most widely advertised option is applied behavioral analysis, an intervention based on behavioral therapy. This type of therapy, prominently advertised by the National Institutes of Health and Autism Speaks, is designed to lessen autistic behaviors through positive and negative reinforcement. In 1999, Mental Health: A Report of the Surgeon General stated, "Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior” (4). Combined with speech and occupational therapy, applied behavioral analysis is the cornerstone of early interventions targeted toward autistic children. However, the endorsement of this type of intervention by the public health community fails to fully address the needs of children and families.

Behavioral therapy as a treatment plan shows a lack of insight into the values of the parents and families affected by childhood autism. It is clear that this disorder affects the family of the diagnosed child as strongly as the child himself. Research has indicated that mothers of children with intellectual disabilities have higher levels of depression than mothers of typically developing children; additionally, mothers of children with autism have higher levels of depression than mothers of children with other disabilities (5). The child’s lack of ability to interact socially with his or her parents, as well as form bonds with siblings or caretakers, clearly affects the overall dynamic of the family. One must take into consideration the emotional toll of autism on families, in order to determine their true needs in terms of treatment options.

Applied behavioral analysis, as designed by Ivar Lovaas, is described by the National Institute of Mental Health as “an intensive, one-on-one child-teacher interaction for 40 hours a week [that] laid a foundation for other educators and researchers in the search for effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones” (6). While studies have shown that many children make significant gains due to immersion in applied behavioral analysis programs, the skills acquired are not necessarily those which are most important to their parents and family members. Those critical of the behavioral model emphasize the issue of generalization-the ability to generalize the skills learned in a discrete trial setting to spontaneous, unstructured situations. One study cited “cue dependency, lack of spontaneity and self-initiated behavior, rote responding, and failure to generalize behavioral gains across settings and responses” (7). In other words, behavioral interventions over-emphasize rote learning, while failing to address the issues which are likely most important to parents, including spontaneous communications, and social and emotional bonding.

This leads to the question of how to best address the needs of parents and families by means of alternative treatments. In recent years, interventions have been designed that focus more extensively on integrating children with autism into the family and classroom units, as well as teaching skills that can be generalized into all settings. Examples of such programs include the Walden Program at Emory University, which focuses on integration of typical and autistic peers in classroom settings (8), and Learning Experiences, an Alternative Program (LEAP) at the University of Colorado at Denver, an intervention that trains non-autistic children to work with autistic peers in an integrated classroom environment (9). The research literature indicates that “naturalistic” interventions, when compared to discrete trial-based applied behavioral analysis, result in increased positive affect in both children and parents, as well as a reduction in problem behaviors (10).

These types of interventions far better serve the emotional needs of families and the educational needs of their children, as compared with behavioral programs aimed at symptom reduction. Given the rapid increase of autism diagnoses over the past decade, programs that successfully integrate autistic children with typically developing classmates are extremely important. Over-reliance on restrictive environments fails to provide children with an optimal educational experience, and further distances them from peers. Furthermore, the skills learned through naturalistic programs address the needs of family members far better than those gained through discrete trials. The public health community’s focus on strict behaviorally-based interventions, as well as their frequent failure to include programs such as the aforementioned in their awareness campaigns, does a disservice to autistic children, as well as their parents and family members.

Accessibility

As stated, the current recommendations from governmental and advocacy groups include intensive early intervention as a key component of treatment plans. Lovaas’ suggestion of forty hours per week of extensive one-to-one behavioral therapy is equivalent to a full time work week. While the National Institutes of Health, National Institute of Mental Health, Center for Disease Control and other groups do not specifically advise this intensive a schedule, they continue to espouse the belief that children benefit proportionally from exposure to services. The National Institute of Mental Health states:

“An effective treatment program will build on the child's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programs are beginning to train parents to continue the therapy at home” (11).

This statement’s focus on parental involvement is another aspect of the public health campaign surrounding childhood autism that must be considered. Clearly it is necessary for parents of children with autism to be involved in devising treatment plans; they must be prepared to devote much time and energy to their children. However, the suggestion from the National Institute of Mental Health that parents continue therapy at home is problematic. One can assume that public health professionals put forth this recommendation based on the assumption that the intention to act will lead to action. It is likely that the great majority of parents have the best intentions toward their children, yet the feasibility of this recommendation is questionable. In families of lower socioeconomic status and social capital, a number of variables may contribute to their inability to access necessary or desired services.

According to Penchansky and Thomas, access is defined as a “consumer’s ability or willingness to use the [system]…a fit between patients and the [system]” (12). In the case of parents of children with Autistic Spectrum Disorder, barriers to services might include a lack of financial means, lack of information regarding available resources, poor coping skills, and varying cultural norms with regard to perceptions of disability.

For the majority of early intervention programs, there is little guarantee that staff members will be able to provide one family with up to forty hours of services per week. Thus, it becomes necessary for parents to hire outside help if they are to reach this suggested goal. Clearly, this is financially impractical for most families; additionally, families with two working parents cannot commit to having one family member stay home with the child so s/he can receive services. One must also keep in mind that access to basic primary care may be needed for an affected child to receive a diagnosis, thereby qualifying for early intervention services. Low income families without insurance are at a disadvantage in terms of ensuring that their children will receive even this basic service (13).

Lack of information about available services is another potential barrier facing families. Availability of services is described as a basic tenant of access to care; while early intervention is available in every state, families located in rural, isolated areas are likely less able to secure the large number of treatment options and sources of emotional support available in heavily populated cities (14).

Additionally, one must consider the personal and cultural dimensions to access of care. As noted above, Autistic Spectrum Disorder is a devastating diagnosis for families, often leading to maternal depression (15). The encouragement by the National Institutes of Health, Center for Disease Control, and autism advocacy groups for intensive, at-home therapy is not necessarily conducive to the needs of the parents. Shreibman states: “Factors such as parental stress, parental depression, marital adjustment, and perceived community support are examples of potentially significant variables. For example, a parent who is very depressed or highly stressed may be less able to provide intensive treatment to the child”. Parents experiencing high levels of stress are thus likely to be less able to access care, as well as less likely to continue treatment methods on their own time (16).

Shreibman likewise considers the cultural implications of parental access to care. She notes that there is a large range in terms of parental expectations towards their children. Parents from cultures that embrace independence in children may be more amenable to exploring different treatment options; conversely, cultures with lower value placed on independence in early childhood may be less willing to seek out a variety of treatment options (17).

Clearly, a number of factors influence the type and number of services that families with autistic children receive. However, as in traditional healthcare, one can see that families with low economic resources and a lack of social capital are far more limited in their access to resources and treatment options. Given the emphasis public health literature places on early and intensive services as necessary components of optimal care for childhood autism, it is essential that the public health community consider and address the barriers to access many affected families face.

Stigmatization

The public health campaign to publicize the growing prevalence of autism has been centered around media campaigns focused primarily on statistics. Websites from groups including governmental agencies and the Autism Society of America (18) use prominent visuals to emphasize the severe increase in autistic children in the past decade; similarly, television commercials from Autism Speaks are generally centered around the growing prevalence rate. While public health professionals appear to be using these dramatic figures as a means of Agenda Setting Theory-capturing the public’s attention through shock value-they are ultimately failing in their campaign to better serve these children. Given the estimate of the Center for Disease Control that approximately 560,000 people aged 0-21 in the United States have a diagnosis of autism (19), it seems necessary to educate the public on other autism-related issues, rather than only growing numbers. The fact that autism is not curable indicates that most people will have contact with an autistic person at some point in their lives. The public health community, for the benefit of autistic and non-autistic people, should focus their efforts on educating the public about the condition, rather than focusing solely on its prevalence.

It is important to consider the role the media plays with regard to the public’s perception of different social groups. DeFleur and Ball-Rokeach state: “The mass media are a major source of patterned social expectations about the social organization of specific groups in modern society…they describe or portray the norms, roles, rankings, and sanctions of virtually every kind of group known in contemporary social life” (20). Thus, it is crucial that one not underestimate the impact the media has on the general public’s perception of the disabled. One can see that, rather than focusing on positive images of autism, the media campaign relies on the perception that this condition is frightening, untreatable, and ultimately undesirable. This approach can only increase the sense of isolation felt by affected parents, as well as influence their ability to care for a child with special needs. Parents should not be made to feel powerless when confronted with a diagnosis of autism in their child. Rather, the media should refocus their campaign to portray a different face of autism to the general public. Their current approach serves only to marginalize autistic individuals and their families, and widen the divide between the disabled and the mainstream population.

Conclusion

While the public health community has embraced the effort to publicize autism, as well as alerted parents and families to the symptoms and risks posed to their children, their campaign has mistakenly focused on narrow treatment options, neglected potential barriers to care, and failed to address solutions for improving the marginalized status of the disabled. By doing so, they run the risk of parents who rely on this information using their available resources inefficiently, forgoing services, or choosing options that are ultimately not right for their children. Finally, the public health community’s approach toward autism has been stigmatizing to a degree; little effort has been made to educate the public about the needs of autistic people, or to promote tolerance and acceptance. Given the number of people in the country living with autism, less attention should be focused on rates of the disorder, and more on how to best accommodate these people. It is within the scope and the mission of public health professionals to incorporate this aim into their agenda.

REFERENCES

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