Dr. Amy Weitlauf is an Associate Professor of Pediatrics at Vanderbilt University Medical Center and the Associate Director of Research at TRIAD (Treatment and Research Institute for Autism Spectrum Disorders), where her work sits at the intersection of clinical science, family advocacy, and early autism diagnosis.
During graduate school, Dr. Weitlauf studied the origins of depression in childhood. However, an assessment course introduced her to cognitive evaluations, sparking an interest that would ultimately redirect her career. Around the same time, she began working with the team that she is still a part of today at TRIAD at Vanderbilt.
“I enjoyed working with autistic children, and the process of solving this diagnostic puzzle for families and how I can best support them,” Dr. Weitlauf shared. What drew her in was not only the diagnostic process itself, but the opportunity to help families better understand their children and feel supported in an often overwhelming moment.
Family-Centered Care in Practice
Over the past 15 years, Dr. Weitlauf has witnessed significant changes in how autism diagnoses are approached. Early in her career, assessments were more heavily centered on clinician observation. “Over time, I’ve learned that this process of early diagnosis is less about what I observe, and it’s more about what families are most concerned about,” she explained. In her clinic, the diagnostic assessments go beyond just the label itself, but approach the diagnosis in terms of the specific challenges and strengths of the children and realities that the families face.
This type of approach aligns with a family-centered care model, which is very prevalent in pediatric healthcare systems and acknowledges the family as the “experts” in providing diagnostic delivery (Kuo et al., 2012). Central to this approach is open communication, shared decision-making, and mutual respect between providers and caregivers or families.
“For early diagnosis, I want to be sure that I am assessing broadly for autism, but also for those areas that are most salient to a family, because every family is different, and every parent and child relationship is different,” Dr. Weitlauf said. “I want to be present for that instead of trying to fit everybody into a single clinical box.”
Genetics, Family Patterns, and the Broader Autism Phenotype
Decades of research have shown that autism has a strong genetic basis, with many genes contributing to diagnostic risk. Twin studies consistently demonstrate that autism is highly heritable, while also highlighting the immense variability in how autism presents across individuals.
Through the diagnostic processes with children, Dr. Weitlauf has picked up on this genetic component. “A lot of the time, parents bring it up about themselves,” Dr. Weitlauf shared. “Parents will say, ‘I’m pretty sure that I’m autistic but I was never diagnosed.” One of the TRIAD studies on which Dr. Weitlauf currently works is an adult study and interestingly enough, many of the participants in the study joined because their children were recently diagnosed. “A lot of the time, after a child gets a diagnosis, parents can reflect on themselves or other people in their family and see similarities.”
Nevertheless, research has shown that there is a presence of autism-related traits in undiagnosed family members of individuals with autism. This idea is known as the broader autism phenotype (Gerdts & Bernier, 2011). “The likelihood of autism is so much higher in siblings than the general population,” Dr. Weitlauf noted. “I like to let families know that if they are worried, act on it. It’s a real phenomenon, and I’m here to help them if I can.”
Race, Culture, and Trust in Autism Diagnosis
A huge focus of Dr. Weitlauf’s research addresses how race, culture, and systemic bias shape mental health services and autism diagnostic processes. Despite increasing awareness and modern technological developments, the average age of diagnosis for individuals with autism remains about four years old. This is especially true for children from traditionally underserved communities, although this gap has narrowed in recent years.
Black, African American, and multiracial families continue to be underrepresented in psychological research, especially research pertaining to autism. The lack of inclusion of minoritized community members may reflect mistrust of medical systems, with structural racism and provider bias creating challenges for these families.
“A lot of families, especially families from minoritized groups, have difficult histories within our medical system,” Dr. Weitlauf noted. “That can make an autism diagnosis even more challenging because sometimes an autism diagnosis can come across as an opinion rather than something grounded in shared understanding.”
In one of her past studies, Dr. Weitlauf and her colleagues examined the diagnostic experiences of Black or African-American autistic children (Weitlauf et al., 2023). Although many families clearly communicated their concerns, they still frequently encountered multiple barriers to being heard. Additionally, about one-fourth of families in the study felt that their race negatively impacted their experiences and provider interactions. Many parents also disclosed self-blame and regret in the diagnostic process that they couldn’t advocate for a diagnosis sooner.
Dr. Weitlauf has commended the emergence of more and more parent-organized and driven groups for people of varying racial, cultural, ethnic, and linguistic backgrounds. “That has been of tremendous value, because as hard as I try, I will never be able to talk about things with the same sensitivity as someone actually from that group,” Dr. Weitlauf stated. “The best thing that I can do as a provider is admit where my shortcomings are, help a family as best I can, but then, ideally, be able to hand a family back to a source of support that feels best, most comfortable, and validating to that family.”
Telehealth and the Rise of Remote Diagnosis
Early autism diagnosis still remains limited in many areas across the world. However, one promising avenue for increasing awareness and assessment is through telemedicine, where trained providers can provide care remotely, particularly aiding rural and historically underserved communities.
The COVID-19 pandemic further accelerated the need for remote assessments, as families and providers were forced to reimagine how care could be delivered outside of a clinical setting. Telehealth diagnostic processes offered a way for families to connect with providers right in the home setting.
In response to this growing need, researchers at TRIAD, including Dr. Weitlauf, created TAP, or Tele-ASD-Peds, which is used by providers and families for telehealth assessments for autism (Wagner et al., 2020). Through TAP, a provider walks a parent through several basic tasks with the child. It’s specifically used for early assessment and allows providers to make behavioral observations of children without them being physically together in a clinical space.
This is incredibly beneficial for rural access as well. “For our TAP tool, especially in a state like Tennessee, which is really rural, and families are having to drive a really long way to get to me for an appointment, telehealth has been tremendously crucial in making care more accessible to families who might not otherwise be able to get to someone like that,” Dr. Weitlauf shared.
Parents are giving incredibly positive feedback, and many appreciated how they were able to lead the tele-assessment process. For many families, telehealth not only increases access, but also shifts the diagnostic experience to be more collaborative.
Overall, Dr. Weitlauf’s work reflects a broader shift in how autism diagnosis is understood and delivered. At the heart of her work is her commitment to building trust and connection with the families and children she works with. Dr. Weitlauf shared, “It sticks with me when I can deliver this pretty difficult information in a way that’s validating to families and meets their needs.”
As autism research and clinical practices continue to evolve, Dr. Weitlauf’s perspective shows that meaningful diagnosis is not only about identifying traits or applying tools, but about how care is delivered, whether that be through listening, empathy, and partnership. In centering families as collaborators rather than clients, her work offers a model for autism care that is both scientifically rigorous and deeply compassionate.
References
Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. https://doi.org/10.1007/s10995-011-0751-7
Gerdts, J., & Bernier, R. (2011). The broader autism phenotype and its implications on the etiology and treatment of autism spectrum disorders. Autism Research and Treatment. https://doi.org/10.1155/2011/545901
Weitlauf, A. S., Miceli, A., Vehorn, A., Dada, Y., Pinnock, T., Harris, J. W., Hine, J., & Warren, Z. (2023). Screening, diagnosis, and intervention for autism: Experiences of Black and multiracial families seeking care. Journal of Autism and Developmental Disorders, 54(3), 931–942. https://doi.org/10.1007/s10803-022-05861-z
Wagner, L., Corona, L. L., Weitlauf, A. S., Marsh, K. L., Berman, A. F., Broderick, N. A., Francis, S., Hine, J., Nicholson, A., Stone, C., & Warren, Z. (2020). Use of the TELE-ASD-PEDS for autism evaluations in response to COVID-19: Preliminary outcomes and clinician acceptability. Journal of Autism and Developmental Disorders, 51(9), 3063–3072. https://doi.org/10.1007/s10803-020-04767-y