Life journey through autism: A parent’s guide to research. (1st ed.). Arlington, VA: Organization for Autism Research, Inc.

Reviewed by: Stacey Sipe, Special Education Teacher
Granite Street Elementary School, Millinocket, Maine

A Review of Life Journey Through Autism

Life Journey Through Autism

As part of my training toward certification as a BCaBA, I have visited the website of the Organization for Autism Research and have become familiar with many of its free publications. I was particularly drawn to Life Journey Through Autism: A Parent’s Guide to Research, as I am spending increasing amounts of time reviewing autism treatment research. Reading through published research can often be a challenging and intimidating experience. I can not help but wonder how overwhelming it may be for parents of children with autism as they try to digest the technical aspects of the research literature, discriminate rigorous, well-designed research from poorly executed research, and make sense of the treatment implications of published findings.

A Parent’s Guide to Research represents the collaborative effort of the Organization for Autism Research (OAR) and Danya International, Inc. The publication is very comprehensive, well written, and presented in an organized and understandable format.

This resource begins with an introduction that details how to use the guide and highlights the key sections. Its preview sets a tone of clarity and ease that is consistent throughout the guide, which is important for a resource intended for a parent audience. Descriptions of subsequent sections follow:

  • How to be a savvy consumer of source of autism information offers specific strategies for accessing published research. This section is particularly well organized, listing several websites for accessing research and tips for effective Internet searches for research articles.
  • Understanding the science model delineates the 5 basic types of research studies (case studies, correlational studies, longitudinal studies, experimental studies, and clinical trial studies) and summarizes their respective advantages and disadvantages.
  • A uniform framework for evaluating research walks parents through the purpose and content of the various sections of published research and summarizes what the reader should be looking for when reading them. Helpful examples are offered throughout, as well as some caveats surrounding potential conflicts of interest.
  • The current state of autism research describes the array of current autism research and cautions readers to be wary of claims of “miracle” cures for autism.
  • Directions for future research offers parents some insight into the types of questions that warrant further scientific inquiry.
  • The Glossary provides clear and concise definitions of terms that parents will encounter when reading through research articles. Such terms can be quite intimidating to those not familiar with the language of research.
  • Several Appendices are presented in this guide, including a description of the various theoretical perspectives on autism, information about participating in research, and some sample research articles with embedded sidebar comments that label the various sections of the study. The worksheets are invaluable tools for culling out essential information and include both a basic and more detailed template.

I am grateful that OAR has compiled such a wonderful resource for parents. This guide is several years old, but it continues to be useful to those parents beginning their search as well as those wishing to delve deeper into research. Although this guide is clearly targeted toward parents, I believe this resource will also be immensely helpful to teachers and other providers learning to navigate the research on autism.

As a special education teacher, I am well aware of the vast array of treatments that are offered to parents of children with autism. Parents armed with skills in identifying and understanding sound research studies will also prompt educators and other service providers to use evidence-based practices and perhaps exercise greater scrutiny when considering the dozens of treatments that lack scientific support. If parents are able to better access and understand research, they will be in a better position to make sound choices to help their children realize their fullest potential reliable. An educated consumer base will undoubtedly support the advancement of both science and practice.

A copy of A Parent’s Guide to Research can be downloaded free

Citation for this article:

Sipe, S. (2009). Consumer corner: Review of “Life journey Through autism: A parent’s guide to research.” Science in Autism Treatment, 6(1), 1, 18.

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