Autism BrainNet relies on the teamwork of many clinical and research staff to acquire and distribute the tissue provided by the donor families. This staff is located at three centers, or nodes, across the United States. We recently spoke with Kelly Gleason, tissue coordinator at UT Southwestern Medical Center, Dallas, TX, to learn more about her work with Autism BrainNet.
How did you get involved in autism research and Autism BrainNet?
Carol Tamminga, M.D., Chief of the Division of Translational Neuroscience Research in Schizophrenia at UT Southwestern Medical Center and director of Autism BrainNet Dallas node, brought me into the program. I had been doing — and still do — research in schizophrenia, bipolar disorder, depression and other psychiatric conditions, as well as substance abuse. When they were looking to start Autism BrainNet and spread it out across the country, our center became a node, most likely because we already ran a brain collection. I have been doing brain collecting and brain bio-banking for almost 10 years prior to joining Autism BrainNet. That experience is what got me involved with the program.
What is your current role with Autism BrainNet?
I am a tissue coordinator at UT Southwestern Medical Center, Autism BrainNet Dallas node. I consent potential donors and do outreach to let the community know about the program. I go to community events, talk to families, and go to the medical examiner meetings. I meet with our local medical examiners and our tissue banks and establish relationships to help identify potential donors and call the next of kin for consent. As this tissue coordinator, I am also responsible for collecting, processing, storing and distributing the brain tissue to researchers from our node.
In your experience, what do you think have been the biggest findings or revelations when it comes to studying the postmortem brain?
I had never thought about autism research before joining Autism BrainNet, but after I started working with the program, I found out that my nephew had autism. Being a part of Autism BrainNet then took on a whole new meaning for me. He was 18 months old when he was diagnosed; he was nonverbal and wasn’t really making social connections.
I asked myself: What’s so different with him? Is there any point where we can step in? Are there critical time periods that make a difference? This personal experience brought on the realization to me that the research that we’re facilitating using this brain tissue is really the only way to answer these questions.
I think that this research is invaluable for the families too. As a family member, parent or sibling to somebody who has autism, you may spend countless amounts of time trying to help your loved one with therapy and education, and then, when he or she passes away, it feels like your journey and your battle might not have been for something. But by donating, it means everything. Brain donors are the new face of what researchers discover; they are the future of research. Your loved one makes the difference for the people coming next. They are going to be the reason that we’re going to figure out how to best support people with autism and their families. What better thing can you give to the world than hope?
Being part of Autism BrainNet also helped me in my family. When my nephew started to display behaviors associated with autism, I probably would not have noticed these characteristics right away, but I had gone to community events and I had listened to parents and families about what they saw. So I too was able to identify it sooner and also be somewhat prepared for what was in store for our family.
Why are studies of postmortem brain tissue so important for advancing autism research?
I think that studying postmortem brain tissue is the most invaluable resource because you can’t look at a neurodevelopmental condition, like autism, and figure it out without directly examining the brain. You can’t see it, and that’s the hardest thing. If someone cuts their arm and they go get stitches, you can directly see what happened and how to treat it. But with autism, the only way to know if there’s a difference in the brain (or if there’s not a difference) is by studying postmortem brain tissue.
This research allows for understanding the mechanisms in the brain of someone with autism at the molecular and cellular levels. It is the best way to look and shed light on something that is extremely complex. Is autism associated with changes in the brain receptors, cells or circuitry connections? This knowledge can help to identify treatments to best assist people.
What has been the most rewarding aspect of collaborating with Autism BrainNet for you?
Honestly, all of it. When we first were asked to be a part of the program, I thought, “Yes, I’ll do the brain collection.” But as I was getting educated about what Autism BrainNet is, I realized that it’s not just a biobank. It’s the get-togethers, family connection, resources. There’s a whole community, a real community of researchers and people, who, from parents to siblings to just allies, are trying to make a difference. I was amazed at the amount of education and growth I got by joining the Autism BrainNet team.
How do you see the future of autism research, especially when it comes to postmortem brain studies?
I see the research going into more integrated and translational science directed by what we see in the molecular mechanisms and genes, and how we can influence therapies or interventions. The more you know, the more you can assist and help.
While Autism BrainNet research relies on the generosity of donors who had autism, we also need to think about the value that donors without autism bring to the program, whose tissue may serve for comparison purposes. As a researcher, I initially didn’t have any connection to the autism community, because autism hadn’t touched my life directly. But it is important to get people like myself involved and understanding why you, as a person without autism, would want to donate to Autism BrainNet. It’s because we need you too, because we need people who have different backgrounds. Autism can touch everybody, no matter your race, ethnicity, gender or socioeconomic status; it doesn’t discriminate.