David Celiberti, Elizabeth Tokarskaya, and Stacey Sipe
Association for Science in Autism Treatment
Reading through published research can often be a challenging and intimidating experience for many, including students and seasoned professionals. It can be even more overwhelming for individuals with autism, as well as parents, as they try to comprehend the technical aspects of the research literature; discriminating rigorous, well-designed research from poorly executed research; and carefully weighing the treatment implications of published findings.
As part of our commitment to promoting science-based decision making and consumer advocacy, we often take the opportunity to showcase the work of other organizations that share our values. We frequently visit the website of the Organization for Autism Research (OAR) and have become familiar with many of their free publications. Back in 2009, we were particularly drawn to their publication, Life Journey Through Autism: A Parent’s Guide to Research, and published a review at that time. We were delighted to learn that OAR has published the second edition of this important resource in 2019.
A Parent’s Guide to Research represents the collaborative efforts of OAR and Danya International, Inc. The result is a well written and comprehensive resource presented in an organized and understandable format. This second edition resource begins with an introduction detailing how to use the guide and highlighting 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 these sections follow:
- Section 1: How to be a savvy consumer of sources of autism informationrecommends a healthy skepticism about the veracity of information accessible to parents. The discussion about news stories, social media, and blogs is very apropos and is an important expansion in this second edition of the resource booklet. The examples of sensationalized headlines would not at all be surprising to those who follow our Media Watch efforts as there is no shortage of misleading and confusing news stories. Section 1 is particularly well organized, listing several websites for accessing research and provides step-by-step suggestions for carrying out online searches for research articles. Our readers may also be interested in a related article that we published earlier this year on this topic, titled Strategies to Consider When Conducting a Comprehensive Literature Search. (McKenna, 2021).
- Section 2: Understanding the science model explains the difference between “basic” and “applied” research (basic research conducted to advance theories and applied research focusing on real-world application). This section delineates the five basic types of research studies (e.g., case studies, correlational studies, longitudinal studies, experimental studies including both randomized group design and single-case design, and clinical trial studies) and highlights their respective advantages and disadvantages. The final part of this section describes the different types of evidence. Sadly, there are over 500 treatments proposed for autism with proponents who often grossly exaggerate the evidence basis for their work.
- Section 3: A uniform framework for evaluating research walks readers through the purpose and content of the various sections of published research and summarizes what the reader should be looking for when reading them. This section includes many helpful examples, as well as some caveats surrounding potential conflicts of interest and suggestions on how to scan an article to quickly distill essential information.
- The Glossary provides clear and concise definitions for a few dozen terms that readers will encounter when reading through research articles. Such terms can be quite intimidating to those not familiar with the language of research. We were particularly impressed by these definitions that were worded in such a user-friendly manner.
- Autism Resources provides an annotated list of organizations that provide resources for parents. The succinct descriptions for each organization provides readers with a sense of what each website can offer them.
- This is followed immediately by the section, Recommended Readings, which includes books on autism, books on reviewing research, as well as journals and summary reports.
Several very informative Appendices are presented in this guide:
- Appendix A: Current State of Autism Research provides an overview of autism research addressing the causes of autism and, unfortunately, some related misconceptions. It also showcases numerous areas where more research is needed (e.g., early diagnosis and intervention, comorbidity, health and safety, use of technology) and we wholeheartedly agree that these represent questions warranting further scientific inquiry. More research in these areas will undoubtedly enhance the lives of individuals with autism and their families. Furthermore, we owe it to parents to help them recognize that the science surrounding autism and its treatment is indeed a work in progress.
- Appendix B: Participating in Research Studies describes the ways individuals with autism may participate in current studies and research. This part provides an overview of opportunities and the key points parents need to consider before consenting to participate in a research study including both frequently asked questions and ethical considerations.
- Appendix C: Sample Research Articles serves as a helpful guide on how to effectively read the various sections of research articles. It provides different samples of the case, correlational, longitudinal, experimental, and clinical trial studies that can help any reader to comprehend and evaluate the key findings and the author’s takeaway message.
- Appendix D: Sample Worksheets offers a set of worksheets that can improve the reading experience of research articles. These worksheets help summarize articles, guide the reader by asking specific questions, and evaluate the relevance and quality of an article. For instance, a Research Study Appraisal Checklist for Parents helps readers assess the article’s credibility and relevance through completing important checkpoints. Moreover, the Appraisal Question Guidelines walk the reader through the essential aspects of an article in a strategic and systematic manner.
We are grateful that OAR has compiled such a wonderful resource for parents and took the time to create a second edition. As was the case with the first edition, it is useful to those parents beginning their journey as well as those wishing to delve deeper into research. Although this guide is clearly targeted toward parents, this resource will also be immensely helpful to graduate and undergraduate students, educators, and other providers learning to navigate the research on autism.
Given the vast array of treatments that are offered to parents of children with autism, being empowered with skills in accessing and understanding research may also prompt educators and other service providers to use evidence-based practices and perhaps exercise greater scrutiny when considering the dozens of available treatments that lack scientific support. If parents are able to better access and understand research, they will be better positioned to make sound choices to help their children realize their fullest potential. We firmly believe that an educated consumer base will undoubtedly support the advancement of both science and practice.
A free copy of the 2nd edition of a Parent’s Guide to Research can be downloaded here. It is also available as an eBook. You can download it for Kindle, Nook, and Kobo. A prior version has been translated into Spanish in 2003 and is available for download!
McKenna, K. (2021). Science Corner: Strategies to consider when conducting a comprehensive literature search. Science in Autism Treatment, 18(3).
Citation for this article:
Celiberti, D., Tokarskaya, E., & Sipe, S. (2021). Review of Life journey through autism: A parent’s guide to research. Science in Autism Treatment, 18(6).
Other Related ASAT Reviews:
- Ten resources for consumers to evaluate information sources
- Autism resources for journalists: Ten websites supporting science journalism
- Article Review: Countering evidence denial and the promotion of pseudoscience in autism spectrum disorder
- Research Synopsis: The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example
Related ASAT Articles:
- Caveat lector: Let the reader beware
- “Verification” and the peer review process
- Standing for science on parent social media
- Clinical Corner: Explaining decision to use science-based autism treatments
- Characteristics and quality of autism websites
- Can scientists prove that a treatment does not work? And… Is bigfoot real?
- Strategies to consider when conducting a comprehensive literature search
- Retraction of published research
- Science Corner and “Is there science behind that?”
Related Media Watch Letters:
- Media Watch: ASAT responds to Psychology Today’s 3 Ways that pseudoscientific therapies can be harmful
- Media Watch: ASAT responds to Medscape.com’s Unproven therapies are ‘muddying’ cell and gene advances
- Media Watch: ASAT responds to Science-Based Medicine’s Preying on the vulnerable: Electrodiagnostic, beach flower remedies, and sound therapy for autism, ADHD, and learning problems
- Media Watch: ASAT responds to NIU’s science or bunk: How to tell the difference
- Media Watch: ASAT responds to Chicago Tribune’s story Autism treatment: Science hijacked to support alternative therapies
- Media Watch: ASAT responds to NY Times’s story Trying anything and everything for autism