This study was completed by Rachel Donaldson as part of an MSc Education and supervised by Dr Katie Cebula (School of Education, University of Edinburgh). Please note that this study was written up for a dissertation and is not, at this time, a peer-reviewed publication.
Broad Autism Phenotype (BAP) is the milder autism-like traits in individuals without a diagnosis of autism. The main aim of this study was to begin the process of involving parents of children with autism in BAP research. While there has been more and more research involving BAP, much of which has focused on parents, researchers have not yet asked parents directly about their views. This study attempted to do so via an online survey.
The survey was completed by 87 parents, with findings showing that:
• Parents were generally not very familiar with the concept of BAP
• Parents appear to have good self-awareness of their own BAP traits
• Parents tended to view any BAP traits as having a positive impact on themselves and their relationship with their autistic child
• BAP research was rated as very important but judged to be less important than autism research overall
While parents did not have much previous knowledge of BAP, they were generally supportive of research into this area. It is therefore important that researchers keep engaging with the autism community to make sure that parents are more aware of the research being done in this area and to avoid any misinformation. Also, by continuing to ask parents about their views and priorities this can help researchers set goals that can have real-life benefits. The positive impacts of having BAP traits reported by parents could help researchers to identify new areas of research. For example, exploring further whether similar BAP traits across family members helps to build family bonds and improve parents’ well-being. One challenge of BAP reported by parents was that BAP may lead to self-blame over their child’s diagnosis. It is important to highlight that the genetics of autism are complex and that other factors are involved.
Thank you again to those who gave their time to participate in this research. It is hoped that this study can provide a starting point for further engagement with parents and others in the autism community on this topic. If you would like to read more, please see the links below to further information on BAP and autism research.
Please help Tina Boni , a student at Carlow University, with her survey into autism and parental stress.
Boni writes “My name is Tina Boni and I am a Doctoral Candidate at Carlow University in Pittsburgh, PA completing my dissertation research. My research examines Parental Stress, as related to parenting a child with an Autism Spectrum Disorder. As you probably well know, parenting a child with an autism diagnosis is an incredibly stressful job, and can significantly impact parental mental health, marriage, career, and the relationship between parent and child. This research seeks to better understand how specific individual child factors correlate with parental stress, in an effort to provide more practical insight into family-centered approaches to care.
I am seeking parents (or full-time caregivers) of male or female children, aged 6-18, who have been diagnosed with an Autism Spectrum Disorder of any functioning level to participate in this study. The survey takes approximately 20-30 minutes to complete, and there is a small incentive for participation. Please contact me directly with any questions you might have at email@example.com.
Please click on the link below if you wish to participate. Thank you!
In Georgia, there are an estimated 1 in 64 children with an Autism Spectrum Disorder (ASD), and likely as many adults. While we know it is most important to provide appropriate support to address challenges and to build strengths today, the Emory Autism Center (EAC) is also committed to understanding the complex biology associated with autism to gain a better understanding of causes and treatments. Therefore, Emory is working to reach out to people with ASD and their families to be part of the SPARK study.
The goal of SPARK is to accelerate autism research. By building a community of tens of thousands of individuals with autism and their biological family members who provide behavioral and genetic data, SPARK will be the largest autism research study to date. We need your help to get the word out!
The easiest way for a family, or an adult with ASD, to start enrollment is to go online to www.sparkforautism.org/emory or to contact Mr. Jermel Wallace directly (Jermel.L.Wallace@emory.edu or 404-727-8350). We have brochures, business cards, postcards and a flowchart of the registration process and would be happy to get that to you.
We would appreciate it if you could share this information with your clients affected by ASD. Possibly, display a poster and information cards in your waiting room and directly give information to individuals and families affected by ASD at any age. We can provide more copies anytime. Just let us know. Also, we would appreciate the opportunity to come and tell you more about the study in person. Mr. Wallace will follow-up with a phone call in the next few weeks.
families who have children diagnosed with Autism Spectrum Disorder (ASD). It is most relevant to parents who are adjusting to a child’s recent ASD diagnosis, but the materials are freely available to anyone with an interest in learning about ASDs.
Participation in this project is completely voluntary. If you choose to participate in the eLearning project you will have the opportunity to access interactive online learning modules to help you learn new ways to help your child and family. The modules cover
• What Autism is,
• ASD Treatments,
• Changing Behavior,
• Stress Management and Coping, and
• Navigating Systems.
These online learning modules are free and you can stop participating at any time. One participant will win a $25 electronic gift certificate! You can also choose to receive feedback on your levels of stress and self-efficacy after completing optional follow up surveys.
Please feel free to contact the researcher, Megan Runion at firstname.lastname@example.org, with any questions. Thank you!
This research is being conducted by Megan Runion, a second year graduate student in the School Psychology program at Penn State. Megan is excited to offer learning opportunities for families and to learn more about how families can best benefit from online learning.