Parent to Parent Making the Case for Evidence-Based Practice: Parents Who Have Children with a New ASD Diagnosis Are Faced with More Information Than They Can Possibly Absorb, and a Series of Decisions to Make as Their Children Grow and Develop. They Must Understand the World of ASD Well Enough to Navigate It
Rue, Hanna C., Ladew, Patricia, The Exceptional Parent
For families of children with autism spectrum disorders (ASD), finding information about treatments is easy. What's difficult is finding reliable information that has withstood the rigors of science, is comprehensive in scope, and is accessible and easy to read.
Recently, several parents who have children on the autism spectrum joined forces with professionals associated with the National Autism Center to author a manual that is an informative, easy-to-understand resource for families in search of the best treatments for their children with ASD. This article provides the perspective of two parents who participated in the development of the guide.
For Janet Amorello, whose 16-year-old son Sam was diagnosed with autism more than a decade ago, collaborating with the National Autism Center to create this manual was a rewarding experience, and an opportunity to help parents who face the same kinds of challenges that she and her family faced years ago.
"When my son was younger, there were a lot of books about what to do, but there wasn't anything that told me what had been researched," says Janet. "There wasn't a book that really explained the scope of what was out there in terms of treatments. Those were scary days - everyone seemed to be selling a 'cure.' Parents often have limited financial resources, but we are all susceptible to buying hope. Of course I wanted to do what was going to work. But I just didn't know what that was."
Parent author Katherine Bray, mother of 12-year-old Christian who has autism, cerebral palsy, and epilepsy, advises parents to conduct their own research and find sources that are reputable. "Using this guide as a resource will cut down on the amount of research parents need to do," she says. "It gives them the tools they need to implement programs for their children that will impact their future success."
A guide to decision making
The 200-page manual--"A Parent's Guide to Evidence-Based Practice and Autism"--is available from the Center's site as a free download. Its aim is to help parents as they make decisions about how to best help children with ASD reach their full potential. The first chapter includes a review of autism spectrum symptoms (including difficulties with verbal and nonverbal communication, problems with social behaviors, sensory sensitivity, etc.), and conditions that may be co-occurring (such as depression, attention deficit hyperactivity disorder, and obsessive-compulsive disorder).
The second chapter, entitled "Research Findings," describes effective treatments that were identified through the National Autism Center's multi-year National Standards Project [SEE RELATED SIDEBAR]. The findings included 11 "established treatments" that produce beneficial outcomes for individuals on the autism spectrum.
Other chapters discuss the importance of professional judgment and data collection, the role of family preferences and values in the decision-making process, and factors parents should consider when choosing a team of professionals. The guide provides a checklist parents can use when they are trying to find experienced individuals and/or organizations that will be the best fit for their child's treatment team. It also includes the full text of the Findings and Conclusions report from the National Standards Project.
Translating research into practice
As parents of child with ASD know, identifying the best possible treatment or treatments for children on the autism spectrum is an overwhelming task. In fact, it took the National Autism Center's "expert panel"--comprised of leaders in the fields of psychology, speech-language pathology, medicine, behavior analysis, and positive behavior supports--several years to review thousands of research abstracts and evaluate hundreds of studies before they were able to determine which treatments had sufficient evidence to support their effectiveness, and which did not. …