I have the habit of writing a diary. When I review my diaries at the end of a year, I am so surprised by how many times I expressed my dedication and passion for autism to myself in the diary. The reason for this passion is a mystery to me to some extent, but I do know that my story with autism began in college.
In 2016, I joined the university’s volunteer team. At first, it seemed that the experience of our team was not at all tailored for the special composition of the social welfare home. The class we helped had 26 children with disabilities including hearing problems, Down syndrome, and autism spectrum disorder (ASD). I enjoyed my experiences being with them but felt confused at the same time. I wanted to communicate with them better and understand their ways of thinking as unique persons. In order to achieve this, I thought I should not be ignorant of their disability and related behavioral patterns.
Motived by my curiosity in specific questions, I was very excited to discover the “Autism Project” at Dr. Rachel Z. Han’s Lab, which was designed to explore ASD children’s socio-emotional development in the family context. They recruited families with children with high-functioning autism (HFA). Even though HFA is a branch on the autism spectrum, there is a big discrepancy of the children’s behaviors and autistic traits. We helped test their intelligence, behavioral challenges, some biological indices and so on. We also collected their mothers’ reported stress level and daily cortisol samples. After analyzing the data, I found that parenting stress is positively correlated with children’s externalizing behaviors. In addition, parent cortisol responsivity moderated the association between parenting stress and child autistic core symptoms. Although no causal relationship was revealed from my analysis, I was impressed with how family members influence each other on so many levels (biological, emotional, behavioral, cultural). There were unique challenges for families of children with autism that were not acknowledged well. To better serve these populations, we need to dig into the perspectives of these family members and explore their stress level, mental health conditions, and perceptions of the relationship with family members on the autism spectrum.
To pursue my interest, I am now a third-year graduate student in Virginia Tech majoring in Human Development and Family Science. So far, my research has mainly focused on young adult siblings of autistic individuals. I explored their coping patterns and their distress level. One thing I tend to be cautious about is that the research may bring potential offense to these families. The terminology of autism is one of them. For example, a study conducted in UK revealed that ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults; while the term ‘autistic’ was endorsed by a large percentage of autistic adults and family members but by considerably fewer professionals. (Kenny et al., 2016). Bury et al. (2020) explored what autism-related terminology did Australian adults with ASD prefer. The results showed that ‘person on the autism spectrum’ was the most preferred term overall. Therefore, keeping in mind the appropriate use of terminology is very important for researchers. In addition, although I try to portray the challenges of the family, I should not disregard the uniqueness of each family and the positive side of having siblings or family members on the autism spectrum.
Bury, S. M., Jellett, R., Spoor, J. R., & Hedley, D. (2020). “It defines who I am” or “It’s something I have”: What language do [autistic] Australian adults [on the autism spectrum] prefer?. Journal of Autism and Developmental Disorders, 1-11. https://doi.org/10.1007/s10803-020-04425-3
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462. https://doi.org/10.1177/1362361315588200
This post was written by Shuqi Yu, a a graduate student at Virginia Tech University. Shuqi is also a volunteer with CA Human Services.
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