by Lilliam Acosta-Sanchez
I recently had a conversation with Carolyn Hare, Clinical Director for Autism BrainNet, and Nicole Coman, Clinician for Autism BrainNet, to learn about their role with Autism BrainNet and how they support our donor families.
Read the conversation and learn more about the caring staff at Autism BrainNet.
Tell us about your role with Autism BrainNet.
Nicole Coman: I am a Clinician and part of Autism BrainNet’s clinical team. Previously, I consulted as a clinician with the Autism Tissue Program for many years. I am a school psychologist but spent much of my career working in the field of autism research. I am based out of the Boston area. Nationally, I am responsible for working with the families of our donors in obtaining clinical, diagnostic and medical information to support the donation.
You have met hundreds of families who have made the most precious gift to Autism BrainNet. Can you share something about our donor families?
Our donor families are each unique. They are from vastly different communities and life experiences. One common thread, however, is their steadfast love for and commitment to supporting their sons, daughters, sisters, and brothers impacted by an autism spectrum disorder. This commitment extends to helping other families as well, reflected in the decision to donate brain tissue to Autism BrainNet.
Autism BrainNet ensures to be a source of comfort and support for donor families. Can you walk us through this process?
We endeavor to provide the support and comfort our donor families deserve as part of our Donor Aftercare Program, which looks different for each person. At the core, though, is honoring the legacy their loved one has established by contributing to autism research. We welcome ongoing contact with our families via phone, email, and visits whenever possible. We also respect the need for privacy and space as grieving occurs. There are two important goals in following up with our families: the first is to be helpful and provide support, the second is to complete the donation process by conducting assessments which become part of each donor’s research chart. Once the donation process is complete, many of our families choose to engage with Autism BrainNet for the long-term and become advocates for donation. Our families have volunteered at walks, shared their experience with journalists and contributed to our newsletter.
Why is it important to study postmortem brain tissue?
Studying brain tissue is the purest way to understand the neurology underlying the behavioral differences observed in people with an autism spectrum disorder. Gaining an understanding of structural variations inspires the development of better interventions and, ideally, empowers families and self-advocates to pursue a clearer path to meet their individual needs and interests.