Research is very important for parents to understand—unfortunately, it isn’t something that a lot of families have time for or can easily access. It may seem that research exists in an ivory tower. I want to inspire you to embrace research. It helps inform the practitioners and teachers that work with your loved one on the spectrum.
It gives you the power to understand why some services, medications or therapies may be better than others. Knowledge is power. Included in this article are research summaries, in terms that parents with limited research knowledge can understand on topics I frequently research within the realm of the autism spectrum: health, family health and outcomes and adults and teens.
It is also important to know how to find the original research, so you, as a reader, can make your judgments on the merit and soundness of the evidence presented. I have also included ways that you, as a parent, loved one or adult on the spectrum can access research in a meaningful way.
Tint, A., & Weiss, J. A. (2018). A qualitative study of the service experiences of women with autism spectrum disorder. Autism, 22(8), 928-937. https://doi.org/10.1177/1362361317702561
An increasing body of literature has identified that there are differences between the female and male diagnosis and experiences. When being more specific about the differences in males and females on the spectrum, women with autism spectrum disorder (ASD), without intellectual disability (ID) have greater challenges in employment and greater barriers to receiving services.
The purpose of this study was to understand how women with ASD perceive their support service experiences, what are the unmet needs of women with ASD and what barriers exist. The researchers found that service providers were dismissive about their service needs because they “didn’t look the part” and that having positive coping strategies was at time detrimental to services later in life.
The women in this study also shared that they constantly struggled to receive the services they needed because they didn’t present “as severe” as the criteria for services designated. This description of unmet need, though presented here in adults, is important for families to understand as their child moves into adulthood and possibly more independent living, help them advocate for services. If your child is female, that advocacy and support may be needed more.
Blagrave, A. J., & Colombo-Dougovito, A. M. (2019). Experiences Participating in Community Physical Activity by Families with a Child on the Autism Spectrum: a Phenomenological Inquiry. Advances in Neurodevelopmental Disorders, 1-13. https://doi.org/10.1007/s41252-018-0094-0
Participating in physical activity for families with a child with ASD can be challenging for many reasons. However, physical activity/exercise is identified as an evidence-based practice that can help reduce anxiety, self-stimulatory behavior, and aggression and increase health, language and social interactions.
It is important to understand what barriers exist for families to help improve services for families. Parents in this study identified safety outside of the home, lack of acceptance, behavior affecting the family participation and limited opportunity for activity as barriers to participation. These barriers continue into adulthood for individuals with ASD.
Improved advocacy, improved social connections, and support are important to improve participation. Even programs identified as “autism-friendly” sometimes still lack trained staff and supports needed to make participation successful. Community agencies should work to seek input from all stakeholders in the autism community to help improve access for families.
Li, D., Larsen, L., Yang, Y., Wang, L., Zhai, Y., & Sullivan, W. C. (2019). Exposure to nature for children with autism spectrum disorder: Benefits, caveats, and barriers. Health & Place, 55, 71-79. https://doi.org/10.1016/j.healthplace.2018.11.005
There is limited research but substantial parent report that suggest that exposure to nature can have a calming effect for individuals on the spectrum. This study aimed to identify the specific benefits of being in nature, and the potential barriers that could exist in accessing nature. The benefits identified by the researchers included sensory and motor development (natural play equipment, experiencing the wild, individual sports) emotional development (relaxation, emotional control, and energy release) and social development (with other children and family members).
Concerns and barriers included inappropriate behaviors in public, safety issues, phobias, social exclusion/judgments from others and other barriers such as the desire to be with technology instead as well as boredom and financial/time burden of accessing nature. Similar to Blagrave and Colombo-Dougovito (2019), families discussed the need for parks and natural spaces to program for and accommodate children with ASD.
And because of the wide range of ASD needs and sensory seeking and avoiding behaviors, outside play can look different for each child. Ultimately, the authors concluded that more research should be done, but that the benefits of nature and outdoor experiences are very important to children with ASD.
Mazurek, M. O., Dovgan, K., Neumeyer, A. M., & Malow, B. A. (2019). Course and Predictors of Sleep and Co-occurring Problems in Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 1-15. https://doi.org/10.1007/s10803-019-03894-5
Though not part of the diagnostic criteria for ASD sleep disturbances are one of the most commonly reported co-occurring conditions associated with this condition, affecting between 50-80 percent of children on the spectrum. This study examined chronic sleep disturbance in ASD over time in a large sample. In this study, 24 percent of the participants had their sleep problems worsen over time, while 32 percent showed improvements.
When looking at all the potential predictors of sleep disturbance, within this study, caregivers having a higher education were associated with fewer sleep disturbances. This study also found a significant correlation between sleep problems and sensory over-responsivity in both younger and older children. This could indicate that sensory over-responsivity is a predictor of sleep problems in young children. Unlike other sleep studies, these researchers found there was not a predictive relationship between anxiety and sleep disturbances in younger or older children.
Sleep is important for overall health, and when we have poor sleep, our immune and endocrine systems can be affected. The more we can understand sleep disturbances and their causes, the more likely we are to improve quality of life for individuals with ASD (and their families).
Access to reputable ASD research
Google Scholar:
https://scholar.google.com/
Free abstracts and some full articles for any research topic. If you have library access to a university (most students/staff and faculty do) link your account for full articles.
Spectrum News:
https://www.spectrumnews.org/
Research is put into many digestible articles, and some of the latest research is presented weekly.
International Society for Autism Research:
https://www.autism-insar.org/page/journal
Articles published in Autism Research are made more stakeholder-friendly through lay abstracts, which are found at the bottom of the page in a separate hyperlink.
Things to remember when examining research
Qualitative vs. Quantitative Studies
People not in academia (and honestly those who are) sometimes put more value on quantitative research than qualitative and wrongly assume that more subjects equal better data. While statistics are very important, and quantitative research provides a LOT of information, qualitative studies often provide the foundational research for new lines of inquiry. Both are important to their fields of research, and both can gain insight into stakeholder experiences and needs.
Funding Source and Bias
A lot of larger scale research projects need grants and external funding to carry out the project. Knowing if research was federally funded or if it came from private grants and organizations can sometimes affect reporting of the data. Make sure to see if research came from independent researchers, or if the research was sponsored by a pharmaceutical company or other organization that might have a vested interest in the outcome of the study.
Time to Print
Depending on the research, or the strength of the line of research, studies that are older than six years can be outdated. Remember that once research is conducted, it can take a scientist two years to write and publish his/her findings.
This article was featured in Issue 88 – Knowledge is Power
The post Why It’s Important to Embrace Autism Research appeared first on Autism Parenting Magazine.