Maine Access to Inclusive Education Resources

It is not that long ago when there was very little understanding about autism and even less was known about the effectiveness of treatments and interventions. Today, parents and caregivers can be overwhelmed by information in print, on TV, online, and in social media. Educators, professionals, family members, friends, and other parents and caregivers offer additional sources of news and information about how to best help your family member on the autism spectrum. Knowing how to sort through all this information can be both confusing and exhausting. However, being a knowledgeable consumer can help you advocate for services and supports that have scientific evidence of their effectiveness and make the best use of your time, efforts, and mental and financial resources.

Here at the Maine Autism Institute for Education and Research (MAIER), we support evidence-based practices and research supported information in serving individuals and families impacted by autism and the professionals who serve them. In this article, we will provide an overview of the importance of autism research to further our understanding of autism, the types of research you may encounter, and the impact of research findings on individuals and families. In addition, we offer suggestions as to how you can evaluate autism information and research, and offer resources for further reading if desired.

Researchers who conduct studies to better understand autism have worked diligently to improve the lives of individuals on the spectrum and their families. Scientists have studied the causes and characteristics of autism, its impact on individuals at different points in their development, the impact of autism on family life and relationships, and the effectiveness of treatments and interventions. Other scientists are studying the genetics of autism, its connections to other medical or behavioral conditions, or assessment tools. While autism research in these and other areas are all important, we will focus on two examples to illustrate the research process.

Many autism researchers focus on finding effective treatments and interventions and these studies are conducted under strict conditions by a trained research team. Intervention studies require adherence to specific rules for how individuals are chosen to participate (“recruited”), how the interventions are carried out (“implemented”), how the effects are measured and recorded (“data”), and how the data are analyzed to determine the effect, if any. Research studies must be reviewed by other experts in the field (“peer-reviewed”) to assure that the research was conducted ethically, used sound scientific principles and procedures, and that the results and conclusions accurately reflect the findings.

These research studies most often are conducted at major medical centers, universities, and research centers and have been integral to our knowledge of which interventions and treatments are effective for individuals on the autism spectrum, called evidence-based practices (EBP).  According to the National Professional Development Center on Autism Spectrum Disorder, “An evidence-based practice is an instructional/intervention procedure or set of procedures for which researchers have provided an acceptable level of research that shows the practice produces positive outcomes for children, youth, and/or adults with ASD.”  While not all treatments and interventions are equally effective for all individuals on the spectrum, professionals draw on EBPs to develop and implement education and treatment plans on an individual basis.

Other autism research may study the impact of ASD on family life, communication and relationships between individuals and families and their medical or education professionals, and peer or intimate relationship experiences, perceptions, and outcomes for persons with ASD. These studies may use surveys, interviews, observations, or focus groups to gather data directly from individuals with autism or their close family or peers, and analyze the data to help better understand the experiences of living with autism.  These researchers use specific scientific principles to conduct their studies, to analyze the data, and to report findings. These research studies must also be reviewed by other experts in the field and replicated in further studies to support the conclusions. This type of research is important to advance our understanding of the day-to-day lives of those on the spectrum and their families, and design supports and resources for day-to-day living.

While this may all seem complicated to those who are not researchers, most education, medical, and behavioral professionals are trained to identify and study peer-reviewed research and base their treatment and intervention recommendations on evidence-based practices and research-supported conclusions. As an individual with ASD or a parent or caregiver, you have the right to question your providers about the research and recommended treatments and to explore the research yourself. While published research articles are often complex and written in scientific jargon, there are ways you can explore research to learn more from their original sources.

The Autism Research Institute (ARI) and the Organization for Autism Research (OAR) are two organizations that provide resources to help individuals, parents, and caregivers in sorting through the media and research that bombards us daily to find information that is reliable and based on sound research findings. (See the reference list at the end of this article to download these free resources.)

ARI and OAR offer the following suggestions:

• Be an informed consumer: Evaluate your own family member’s needs as well the research. Consider what is appropriate for your child, teen, or adult family member with ASD, or for yourself if you are a self-advocate.
• Gather information from a variety of sources, network with other parents/caregivers, and talk with your education and medical professionals to identify useful sources of information.
• Remember that sound autism research is based on three principals:
  • It uses scientific principles,
  • It has been peer reviewed, and
  • The study can be replicated.
• Ask yourself the following questions to assess what you are hearing or reading:
  • What is the source?
  • Who conducted the research?
  • Who funded the research?
  • Was this research peer-reviewed?
  • Has this research been replicated?
  • What other studies are referred to in this report?

The OAR (2019) reminds all of us to “Beware of those who claim to have a cure,” as not all treatments and interventions that are promoted in the media are supported by sound research. Your hopes and dreams for yourself, if you are an individual on the spectrum, and/or for your family member with ASD “may leave you vulnerable to those marketing a variety of educational, medical, and other alternative treatments for autism that have no proof of effectiveness.” However, being a cautious consumer will leave you “better equipped to ask the right questions of your child’s doctors, therapists, and teachers about specific interventions or treatment options.” (OAR, 2019)

In a recent webinar, “Autism Research: Nothing about me without me,” Wenn Lawson, Ph.D., an autism self-advocate, described “Participatory Research,” another type of research that bears noting for the autism community. This type of research includes participants (in this case, persons on the autism spectrum) in all stages of the research project, including what topics will be studied. He described the process as a “co-production” in which the individuals with autism are part of the research team from the initial stages to the end. Accommodations are built into the research plan from the very beginning to assure persons on the spectrum are active research partners. While participatory research takes time and attention to individual accommodations, this type of research holds promise for truly inclusive research that provides a voice to individuals on the spectrum. In addition, it can lead to new insights and appreciation of those in the autism community while empowering them as valuable partners in the research process. For more information on Dr. Lawson’s webinar, see our reference list at the end of this article.

In closing, I would like to encourage you and your family members to be open to opportunities to participate in autism research when you qualify to participate and when you are able. Before agreeing, be sure to ask the questions we have discussed in this article to assure your rights are being protected and the project or investigation is based on sound scientific principles. Before you agree to participate, researchers are required to provide you with informed consent that includes your full understanding of what you are being asked to do, the potential risks and benefits, and how the results will be used. As a community, we have much to gain from autism research, and your willingness as individuals and families impacted by ASD to participate in ongoing and new research is vital to this work.

References

Autism Research Institute. (2021, July 14). Guide to Identifying and Understanding Scientific Research about Autism. https://www.autism.org/a-guide-to-identifying-and-understanding-good-scientific-research-about-autism/

The National Professional Development Center on Autism Spectrum Disorders. (2021, July 21). What are Evidence-Based Practices? https://autismpdc.fpg.unc.edu/evidence-based-practices/

Organization for Autism Research. (2019) Life Journey Through Autism: A Parent’s Guide to Research (2^nd edition). Danya International, LLC. https://researchautism.org/resources/a-parents-guide-to-research/ 

Wenn, Lawson. (2021, July 20). Autism Research: Nothing about Me without Me. [Webinar]. Autism Research Institute. https: //www.autism.org/category/webinar/research-webinar/