Factors related to parents’ choices of treatments for their children with autism spectrum disorders

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Abstract

The history of autism treatment has been plagued with fad therapies which waste parents’ and children's time, energy, and money. To determine if referral sources, such as professionals’ recommendations, media, or scholarly sources, have influenced parents’ treatment decisions, parents of at least one child with an autism spectrum disorder (N = 400) were surveyed to determine the sources they used to obtain treatment. Recommendations from professionals in non-medical fields and autism books were the most popular sources of information. Due to the diverse range of influences on parents’ treatment decisions, a multifaceted dissemination strategy for the most effective therapies is warranted.

Highlights

► Our examination of parental treatment decisions for children with autism spectrum disorders indicated that less than 1/2 of surveyed parents reported choosing a scientifically supported treatment. ► Sources of influence for treatment choices most often came from popular media, anecdotal reports, and professional recommendations. ► Demographic factors (e.g., child age, parent education, family income) had little relationship to treatment choices. ► The most influential group of professionals, educators, tended to recommend treatments with less scientific support than treatments with scientific support.

Introduction

With the latest estimate of the childhood prevalence of autism spectrum disorders (ASDs) now surpassing that of Down Syndrome, diabetes, and cancer (Harrington et al., 2006, Kogan et al., 2009), many more parents have faced the daunting tasks of contending with this diagnosis, and most importantly, selecting a treatment for their child in the face of numerous contradictory professional and non-professional recommendations about treatment (Maurice et al., 2001, National Autism Center, 2009). Not only may parents have experienced the shock of an official diagnosis of ASD, they also have been bombarded relentlessly with information from a wide range of sources (Green, 2007). Faced with this abundance of ideas, both good and bad, concerning “appropriate” treatments for ASDs, parents must decide what to do.

Further complicating parents’ treatment decisions, the variety of professionally recommended treatments have included those that are frankly ineffective as well as those strongly supported by empirical evidence (Green et al., 2006, Heflin and Simpson, 1998, Mandell and Novak, 2005, Metz et al., 2005, National Autism Center, 2009). Unfortunately, the research on treatment choice has indicated that many parents may have elected to use ineffective therapies lacking empirical support (Smith, 2005). More research is needed to determine which of these ineffective treatments parents have been using. In addition, knowledge of possible determinants of parents’ unfortunate choices might allow professionals to better advise parents against the use of potentially harmful treatments (e.g., chelation, facilitated communication) and treatment combinations (e.g., the eclectic “autism buffet”) (Cohen et al., 2006, Eikeseth et al., 2007, Howard et al., 2005, Richdale and Schreck, 2008).

Factors contributing to parental decisions, such as autism-related media, Internet websites, and professional recommendations have provided parents with easily accessible information from diverse sources. For example, the Internet contains an expansive variety of websites devoted to autism awareness and treatment. Many of these sources have originated from trusted authority figures (e.g., medical doctors, behavior analysts, dieticians) or celebrities (Green, 2007, Smith and Antolovich, 2000). This variety of resources and information has contributed to confusion about autism treatment and the credibility of various sources.

Very little research exists regarding parents’ reliance on professional recommendations to select treatments. Many parents of children with ASDs have sought the opinions of numerous professionals during the course of treatment decision-making and implementation (Mandell & Novak, 2005). These professionals can include psychologists, behavior analysts, medical doctors, occupational therapists, speech therapists, physical therapists, educators, audiologists, dieticians, etc. Research has suggested that some of these professionals recommend treatments based on their personal belief(s) about the etiology of ASDs rather than the demonstrated effectiveness of the treatments (Elder, 1994). Additionally, even professionals supposedly knowledgeable about scientifically supported effective treatments have sometimes recommended unsupported treatments for people with ASDs (Schreck & Mazur, 2008). However, although professionals may have been recommending unsupported and possibly ineffective treatments, it remains unclear which professionals tend to recommend particular treatments.

Although media and professional recommendations may influence parental treatment decisions, parents’ understanding of treatments and their subsequent treatment choices also may be influenced by a variety of demographic variables (Smith and Antolovich, 2000, Williams et al., 2003). A parent's ability to conduct a sound appraisal of an ASD treatment may be influenced by their level of education. Similarly, parents may judge treatments differently based on their child's age (e.g., being opposed to psychotropic drugs for a toddler with an ASD but finding their administration to a school-age child with an ASD acceptable). Despite the potential for numerous demographic factors to strongly influence parents’ treatment decisions, relevant research in this area has been lacking.

In an effort to address these gaps regarding parental choice of ASD treatments, the purposes of this study are to determine: (a) what treatments do parents report they are currently using for their child with an ASD, (b) if demographic factors are related to parents’ choices of treatments, (c) what other sources of information influence parents’ choices of ASD treatment (e.g., media, other parents, scholarly sources), and (d) where parents are obtaining professional recommendations regarding ASD treatment.

Section snippets

Participants

Before beginning the research, approval was obtained from the relevant office for research protections. After approval, a sample of parents of children with an ASD was compiled by contacting a wide range of organizations (e.g., national autism societies, Pennsylvania and Ohio autism societies, specialized autism schools, doctor's offices, parent support groups, and behavioral health services). To ensure confidentiality, participants were not asked for any personally identifying information.

Data analysis and results

Parent responses were initially transferred from Microsoft Excel into an SPSS database and checked for accuracy by the first author. The database was then evaluated and analyses were conducted. In accordance with our purpose we (a) calculated which treatments were being used by parents for their children with an ASD; (b) analyzed parent demographics related to treatment use; (c) identified parents’ reports of sources that reportedly influenced their choices of ASD treatments; and (d) determined

Discussion

Parents of children with ASD reporting treatment choices for this study indicated choices of treatments within all areas of research support (i.e., supported, limited, mixed, unavailable, and unsupported). Slightly less than 1/2 of the parents reported choosing a research supported treatment for their child with an ASD. Parents also were likely to report choosing unsupported treatments or those with limited scientific support, such as sensory integration, positive behavior support, speech

Conclusion

While participants’ responses in this study may only approximate the actual behavior of all parents of children with ASDs, we revealed trends in parental treatment decision making that indicated that parents rely upon “word of mouth” (i.e., possibly unsubstantiated print media, professional recommendations, and other parents’ recommendations) that must be further examined. From these referral sources, parents receive a variety of recommendations resulting in the “buffet approach” to autism

Acknowledgements

We would like to thank Ilhan Kucukaydin for his assistance with the online questionnaire and the many parents who provided us with information regarding their experiences with autism treatments.

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