Danielle Pennington: Researching Autism and Grief

Research on autism and grief

NC State’s Department of Agricultural and Human Sciences (AHS) recently hosted the biannual Eloise S. Cofer Family Living Lecture Series, which features critical thinkers and doers connecting food, family and community. New York Times Best Seller, Autism Advocate and Animal Expert Dr. Temple Grandin spoke about her lifelong journey with autism on April 11 at the NC State University McKimmon Center.

The free public event was well-attended. Temple encouraged attendees to support youth and families who have autism. She emboldened participants to allow autistic children to be themselves, so they can be successful. Temple’s message particularly registered with one attendee, Danielle Pennington, who is raising a child with autism. Temple’s talk not only relates to Danielle’s personal life, but also informs her research at NC State, which is focused on autism and grief. We spoke with this AHS student about her goals, autism and Temple’s visit.

NC State: Tell me about your academic background.

Danielle Pennington: In 2012, I graduated Phi Theta Kappa with my A.S. in Human Services with a Business Administration concentration from Davidson County Community College, where my desire to help others first bloomed. I then graduated Magna Cum Laude from Catawba College in Salisbury, NC with a B.A. in Sociology and a concentration in Psychology. I am currently working toward a M.S. in Youth, Family and Community Sciences (YFCS) and becoming a Certified Family Life Educator within the YFCS Online program at NC State.

NC State: Please describe your current research. What specifically are you studying? What are your anticipated outcomes?

DP: My research focuses on autism and grief management, two areas of study for which I am passionate. I have a passion for autism because my ten-year-old son Jacob is on the spectrum. Working in a hospice organization in the Piedmont Triad first introduced me to grief management. With this organization, I became a certified thanatologist through the Association for Death Education and Counseling (ADEC). 

My research examines the influence of grief on individuals with autism, their caregivers and their family system from an ecological perspective. I anticipate the impact of loss on the family is dictated not only by the individual with autism’s responses, but also in how the caregiver or guardian frames the loss when discussing it with their loved one. It is my goal to discuss a highly stigmatized topic among a marginalized community. Death happens to everyone, and individuals with autism deserve equal opportunities to grieve and express their grief.

NC State: How has raising a child on the autism spectrum informed your research?

DP: Being a mother of an autistic child has a tremendous impact on my research; it is the catalyst for the work I do each day. As a mother, I felt a multitude of emotions when I learned my child was autistic, like anger, frustration, guilt and fear. On a daily basis, I questioned why this happened to my family. Then I entered the YFCS program, and everything just clicked.

I finally understood the reason I was blessed this wonderful gift. Without Jacob being on the spectrum, I would never had pursued this research. Similarly, if I had not worked in hospice care, I would not have looked at autism from a grief perspective. Last November, I shared my research ideas with Dr. Kenneth Doka, senior consultant for the Hospice Foundation of America and one of my heroes; he said, “Do it, and do it now.” Lastly, my family has also experienced much loss; having witnessed my son’s response makes me inquisitive about the experiences of other families and how they cope with loss.

NC State: What did you learn from Dr. Temple Grandin’s recent lecture on campus?

DP: What Temple says and does captivates her audience and draws them into her story. My son was able to meet Temple and listen to her comments on autism. We bought her book “Temple Did It, and I Can Too”; it has been a great motivator for him.

From Temple, I learned better approaches in working with my son and new ways to communicate with him in order to achieve a more positive relationship. Temple said to “be more specific.” Often, I tend to be very thorough without being succinct. Her comments helped me realize I may need to change the way I explain things or ask questions. I am working on being direct and breaking things down, so my son better understands me.

NC State: How has Dr. Grandin’s message resonated with your current research?

DP: Temple’s message guided me to look at things “from the bottom up.” She said people often overlook the the obvious because it’s our nature to think on a grand scale. I will use this approach in my research when examining grief reactions.

What impressed me most about Temple is her refusal to let a label define her. I instill this in my son every day; that’s why I closed my speech during Temple’s visit with this: “We are more than labels. We are more than just our circumstances.”

Check back each month as we explore a variety of topics about the YFCS Online Program at NC State.