23 April 2018 Blogs, Academic, Faculty, Librarian, Student/Researcher

Unexpected Joy, Discovery and Achievement

How one researcher’s eclectic journey led to radical changes in the way we think about autism.

How one researcher’s eclectic journey led to radical insights in the way we think about autism

Part of the series Adventures in research: Stories behind extraordinary dissertations and theses

At the age of 3 ½, Sandy Weber’s son Erik was diagnosed with “a regressive form of autism.” Told that he would never cognitively advance beyond the level of 18 months old, she was urged to place him in an institution. But Weber ignored that recommendation. Instead, she fought for him to receive proper treatment and services, and developed her own techniques to support his development.

Erik went on to become the first person with autism to be given accommodations by the U.S. Bar Association and is now a special education attorney.

And Weber went on to write a Master’s thesis titled Remarkable Moments: Communicating Trust in the Relationship Between the Child with Autism and the Parent/Caregiver* which has revolutionized the way autism is understood.

Weber’s eclectic background includes the arts, physiology, psychology, nursing, ballroom dancing and costume design – all of which have serendipitously contributed to her extraordinary achievement. We recently spoke to Weber about her academic path, her research experiences and what she is doing now.

What we love most about Weber’s story is how it illustrates the way a researcher’s journey can mirror her life’s journey: it might twist and turn in unpredictable, sometimes frustrating ways that can ultimately lead to unexpected joy, discovery and accomplishment.

It all starts with arts and hearts

Weber’s research journey started in the early 1970s, nearly 20 years before Erik was born. Her passion for painting, sculpting and jewelry made majoring in art a natural fit. With a minor in child development, Weber looked forward to a teaching career – except there were no teaching jobs available when she graduated. Art and music had been removed from San Diego schools’ curriculum in 1974.

Meanwhile, her then-husband and his partner launched a cardiac rehabilitation program. Weber decided to take a basic electrocardiography course in order to help out in the lab, and it turned out she had a knack for reading test results and understanding the physiology. This sparked a new passion for physiological psychology and a new plan to pursue a degree in nursing.

“Along the way,” she told us, “I had gathered the data for what later became my [first] dissertation: Effects of Creative Aerobic Movement on Perceived Self-Image and Kinesthetic Expression.

In her research, Weber became acquainted with the concept of “play science” and its positive impacts on brain function. She created an aerobic program which involved dance and creative movement and, by conducting psychological and physiological pre- and post-program testing, demonstrated how high school students who participated in the program benefitted with statistically higher self-esteem than their peers who participated in a walking/jogging program.

By the time Weber completed her Ph.D. dissertation, she had become the Laboratory Director of the cardiac program and wrapped up her coursework in nursing. However, a family situation arose, preventing Weber from completing the in-hospital practicum required for certification. Nursing was not in the cards.

When life doesn’t go according to plan, carry on

Weber’s experience was the kind of pattern that happens so often in life. Plans -- no matter how well thought out – are derailed. In the following years, the lab closed and Weber pivoted again, applying her art background as a costume designer – ultimately building a successful business – while she raised young children.  

When her son Erik was born, then diagnosed, her life changed again and she found herself applying her diverse mix of research and life experiences to support her child’s development.  

In the early ‘90s, little information was available on autism. “I had to use my creative mind and my observation skills from working with patients to help my son,” Weber said. “Even his preschool teacher had not dealt with autism before.” She credited her earlier training in “play science” for giving her insight into how to support Erik’s development.

Advocating for Erik became a full-time job. Weber said seeking treatment and services for him resulted in “seemingly endless legal battles.” However, Weber knew from her previous research experience about the value of exercise and fitness to build self-esteem and combat anxiety. When Erik was nine, she helped him get involved in the Special Olympics – which proved life-changing for mother and son.

Pre-teen and teen years were a daily struggle of making sure Erik was getting proper medical care, special education and psychological attention – all experiences, which along with working to develop a trusting, emotional connection with him, formed the foundation of her thesis.

“If motivated, people can accomplish levels of achievement others believed to be impossible.”

Fast-forward to 2008. When Erik enrolled in community college, Weber decided to go back to school, too, supplementing the discoveries she made in raising her son with research on the importance of trust in working with autistic children.

San Diego State University no longer offered a Master’s in child development. So Weber was encouraged to pursue interdisciplinary studies, which allowed her to incorporate relevant courses from different departments and develop her own specialized area of study: “autism parenting modalities.”

In the meantime, Erik went on to pursue a Bachelor’s degree in International Development Studies, then a Master’s degree in Public Administration. At this time, he and Weber started receiving invitations to speak as guest lecturers about living with autism. Weber said they continue to present these lectures at universities, “inspiring those who will be educators and caregivers to see the disabled as people first; and to never underestimate the power of the ‘Human Factor’. If motivated, people can accomplish levels of achievement others believed to be impossible.”

Weber and Erik graduated with their Master’s degrees at the same time. “Life was looking promising!” she said. “Then my son turned to me and said ‘Mom! There is something else I’m supposed to do! I also need to go to law school to do special education.’”

“He passed the Bar Exam on the first try,” Weber added, “even though it was not believed he could do it.”

Opening the door to the future of understanding autism

Weber’s revolutionary research in Remarkable Moments: Communicating Trust in the Relationship Between the Child with Autism and the Parent/Caregiver reveals that autism is in part the result of physiological anomalies, in part the result of emotional impairments. In the abstract of her thesis, Weber states, “Because perceived caregiver trust is a key component in autistic behavior remediation, this study affirms, articulates, and expands on the idea that there are actual biological indicators that reflect ‘basic trust.’”

For example, she shows how, in conjunction with functional magnetic resonance, “empathy games” enable researchers to see which areas of the brain light up under certain circumstances.

When asked what motivated her to pursue this research, Weber said it was less about fulfilling the requirements for her Master’s degree, and more focused on sharing information and knowledge that had not been previously gathered or disseminated. In order to make her discoveries accessible to other researchers, it was imperative have her thesis accessible on ProQuest’s Dissertations and Theses Global database. The database is a go-to for scholars, available in 3,000 major academic and research libraries, and supporting more than 2 million searches per year.

“Having my research published through ProQuest allows others to cite my work in their research and opens the door to other studies that will make future changes in how we understand autism,” Weber explained.

These days, Weber is a volunteer coordinator for a Special Olympics Young Athlete program where she supports and inspires a new generation of student teachers and caregivers on how to help people with autism integrate more meaningfully into society, develop more trusting relationships and reach their full potential. She is also a Special Olympics Track and Field Coach, working with many autistic athletes.

“Running is becoming their passion,” she said, “because it calms their anxiety, gives them a sense of accomplishment and helps them feel accepted. And winning a tournament medal doesn’t hurt, either!”

*Sandra Weber’s thesis Remarkable Moments: Communicating Trust in the Relationship Between the Child with Autism and the Parent/Caregiver is available from ProQuest Dissertations & Theses Global, the largest commercial repository of graduate dissertations and theses containing over 4 million works from across the globe, and with more than 130,000 added to the database each year. A recent ACRL/CHOICE review hailed the database as “highly recommended for beginning students through professionals/practitioners.”