By: Cassidy Brown '17
For parents and other family members of an adult child with autism, their needs for guidance, support, and awareness of existing resources has often gone unnoticed. Linda J. Walder, Founder and Executive Director of The Daniel Jordan Fiddle Foundation and passionate advocate for families, recognized this lack of focus on the family members of autistic adults, and this past fall, she and the foundation, in memory and honor of her son Danny Fiddle, established a fund at Rutgers School of Social Work to directly provide services to family members whose child or sibling with autism is aging out of the system. The Daniel Jordan Fiddle Foundation gift has established a fund that will in perpetuity allow three graduate-level fellows from the School to work directly with the family members of autistic adults and to additionally develop a web-based resource guide for a larger audience of family members and caregivers to use nationwide.
The current Fiddle Fellows, Dylan Goodwin, Nicole Paiva, and Michelle Bayha, envision the guide as a first step in helping families navigate this new stage. They also recognize how valuable this experience is for their learning.
"To get the knowledge and skill set to work with family members of individuals who have autism is vital as a graduate student," says Bayha. "This fund has given me the opportunity to learn valuable information directly from the parents and professionals in the field."
Recently, the group met with Anne Holmes, member of the board of directors for the Autism Society of America and VP of the Division of Autism Spectrum Disorders Consulting Services, along with a panel of parents who shared the personal experiences raising an adult child with autism.
Primarily, they spoke about the necessity of access to resources as well as knowledge about how to best navigate the system, recalling what it was like to raise their children during a time when doctors did not understand or even know about autism. The causes of autism were still being primarily blamed on detached parenting,and very few resources existed.
"No one feels your urgency," explained one panelist. "I had to find my way on my own. I had no other choice." Parents on the panel described the education and training they received from Eden, a not-for-profit organization with a mission to improve the lives of children and adults with autism, as life-saving.
"Having a child with autism grounds you," said one parent. "It motivates you, humbles you, and inspires you." The parents emphasized the importance of peer support and groups like Eden. Having these systems in place helps lessen the feelings of isolation that so many parents describe. What the fellows hope to do with their work and resource guide is to supplement that support as much as possible.
Mark Lamar, Associate Professor of Professional Practice and Executive Director of Field Education at Rutgers School of Social Work, explained that the fellows have been advised to listen closely to the needs of the families. "Parents are the experts on their own situations, and so therefore, their expertise can serve as a huge asset. At the same time, different families need different things, and part of the social worker's role is to acknowledge that all support needs to be unique to the family," he explained.
After hearing from the panelists, Paiva said, "What struck me the most in hearing from the parents was how important it is to work with the whole family, and not with just the individual with autism."
Though New Jersey has come a long way in assisting families, there is still much more work to be done, particularly as the child transitions into adulthood. Once he or she reaches age 21, there is a significant lack of guidance and resources available.
"We must continue to make things better. Giving up is not an option. Despite challenging times, we will continue to collaborate until we make a difference," stated Lamar.
The fellows will host The Daniel Jordan Fiddle Foundation Adult Autism Resource Guide on the School's website for use by all in need of information that benefits the diverse population of adults diagnosed with autism.
For more information about The Daniel Jordan Fiddle Foundation, visit: www.djfiddlefoundation.org.