Today, 1 in every 50 children is diagnosed with an Autism Spectrum Disorder (CDC, 2013). There are hundreds of treatments, ranging from behavioral and educational therapies to traditional and complementary alternative therapies to downright dangerous therapies (e.g., Leskovec, Rowles, & Findling, 2008; Meyers & Johnson, 2007). However, many of these treatments are not empirically supported (e.g., Kasari, 2002). Few conditions other than ASD have been plagued with fad therapies that waste valuable time, money, and are possibly dangerous (e.g., Foxx, 2008). Given the chronic symptoms associated with ASD, and the plethora of therapies, it is important for parents to make informed choices regarding treatment.
Several studies discuss the therapies parents choose (e.g., Goin-Kochel et al., 2007; Green et al., 2006; Hebert & Koulouglioti, 2010) but few studies focus on the decision making process of parents selecting therapies. In order to provide effective guidance to parents when choosing therapies, it is important to understand how parents make therapy decisions. How do parents navigate through all the treatments and find the effective ones? Why do parents choose the therapies they do? Where do parents turn to for information about treatments? Does severity of the child’s autism symptoms affect choice of treatments?
This study explores how parents choose ASD treatments, and what factors are important. The author of this paper developed a survey asking parents with at least one child with ASD about the number of therapies they tried, what therapies they are currently using, where they go to for information about autism therapies, what is important when choosing a therapy, what does evidence-based mean, and to rate the severity of their child’s autistic symptoms using a scale. The survey was turned into an online survey, using Survey Monkey®. Using an online support group directory (autismspeaks.org) to find support groups for families of children with ASD, 166 were found in Illinois and 66 were found in Missouri. The search was limited to Illinois and Missouri because the author wanted to learn more about how parents in this region decided on autism therapies since she provides applied behavior analysis (ABA) services to families in this region. However, these results could potentially generalize to a wider group of parents. Out of the 232 support groups found, six support groups were removed because they focused on adults, resulting in 225 support groups. Email invitations to participate in the survey were sent to the contact person listed for each support group. As a result 620 parents completed the survey; 92% of the respondents were mothers and 8% were fathers.
All parents reported using at least one type of therapy, 61% of parents reported using two or three therapies at the same time, followed by 39% using four or more therapies at the same time. When asked to list the therapies they tried or are currently using, parents reported (listed in order of frequency): standard therapy (speech therapy, music therapy), medications, vitamin supplements (B12, melatonin, magnesium, and vitamin C), elimination diets (gluten-free, casein-free and removal of yeast), complementary alternative therapies (massage therapy, chiropractic), ABA therapy, relationship based treatments (social skills therapy, Floor time, attachment therapy), physiological therapies (sensory integration, physical therapy, occupational therapy), detoxification (chelation), equine therapy, aquatic therapy, and special education. An interesting note, parents who rated their child’s autistic symptoms as more severe also reported using four or more therapies. This tells us that the greater the severity of symptoms, the more therapies may be in use, a possible attempt by parents to quickly find an effective therapy.
In regards to where parents go for information about therapies, an overwhelming 72% parents reported they went online first and then talked with family and support group friends, followed by 18% parents reporting they talk with family and support group friends first. Only 10% said they went to their physician or autism therapy provider for information about therapies. Being that the population surveyed is parents who are in support groups, it should not be surprising that many look to their fellow support group peers for information. However, not one parent reported looking at data or reading research about the various therapies, and only a handful of respondents reported they read books—either digital or paperback—discussing ASD or therapies.
When asked what was important when choosing therapies, the most popular comments were: they wanted the most effective treatment with the least amount of time since dealing with a child with autism is exhausting; reduction of symptoms in least amount of time; amount of time it takes for treatment; ability to fit into our busy day; affordability; removal of foods that could potentially be causing symptoms because others say their kids’ symptoms decreased; trying popular therapies being discussed in my circle such as moms groups or autism support groups. One mom reported she is so desperate to help her son she tries any therapy that sounds effective and safe. When asked specifically have they used ABA therapy, 47% of the parents said they are currently using ABA therapy while 33% said they did not have access to ABA therapy, 20% said yes but stopped because it was too time intensive, and 5% said no.
We can hypothesize the surveyed parents want their children to lead fulfilling lives and will try multiple therapies to attain that goal. However, in their effort to help their children parents may fall victim to try unsafe, ineffective treatments that are non-evidence-based and costly both in money and time. In best practice, before starting any therapy parents need to question whether there is scientific evidence supporting the therapy. It is concerning that none of the surveyed parents reported using scientific evidence when choosing therapies. In fact the most important factor was time and effort of therapy implementation, not evidence of effectiveness. Parents’ lack of using scientific evidence may be caused from disconnects between published research on ASD treatments and parents locating the research. First, most research is published in journals or presented at conferences that many parents do not have access to. Second, the scientific arena uses language such as evidence based when research supports a therapy, whereas the parents surveyed understood evidence based as meaning nothing more than the therapy works. Third, since there are so many treatments for autism—including complementary and alternative methods—it would be time consuming for parents to read the scientific literature on all the treatments.
From this study we can glean several things. First, parents need further guidance in locating and understanding the research and research on ASD therapies needs to be disseminated outside of research arenas. Second, since ASD is a collection of symptoms and not all children with the disorder display the same symptoms, one type of therapy does not fit all families. Third, parents’ primary concern is time efficiency, and some parents perceive ABA as too time consuming even though ABA is an effective therapy. However, in a search for effective therapy parents will simultaneously use multiple therapies, which is very time consuming. It is imperative practitioners show parents that over the long run ABA may be less time consuming because of its demonstrated effectiveness. Fourth, parents’ most popular way in finding information about therapies was the Internet however depending on where the parents are searching the Internet is not always a reliable source of information.
For more information Heidi can be reached at hillmhe@quincy.edu.
References
Centers for Disease Control Report (2013). Changes in prevalence of parent-reported Autism Spectrum Disorder in school-aged U.S. children: 2007 to 2011-2012.
Foxx R.M. (2008). Applied behavior analysis (ABA) treatment of autism: The state of the art. Child and Adolescent Psychiatric Clinics of North America, 17, 821–834.
Goin-Kochel, R. P., Myers, B. J., & Mackintosh, V. H. (2007). Parental reports on the use of treatments and therapies for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 1, 195-205.
Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reily, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27, 70–84.
Hebert, E. B., & Koulouglioti, C. (2010). Parental beliefs about cause and course of their child’s autism and outcomes of their beliefs: A review of the literature. Issues in Comprehensive Pediatric Nursing, 33, 149-163.
Kasari, C. (2002). Assessing change in early intervention programs for children with autism. Journal of Autism and Developmental Disorders, 32, 447-461.
Leskovec, T. J.; Rowles, B. M., & Findling, R.L. (2008). Pharmacological treatment options for autism spectrum disorders in children and adolescents. Harvard Review of Psychiatry,16(2), 97–112.
Myers, S. M. & Johnson, C, P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162–82.
