Advocacy, Identity, and Inclusion: Insights from Dr. Dena L. Gassner

Families raising children with autism often face unique challenges, but they also experience profound joys. This week’s Autism Weekly Podcast episode features Dr. Dena L. Gassner, a Senior Research Scientist at the A.J. Drexel Autism Institute at Drexel University. 

Dr. Gassner is known for her groundbreaking advocacy, research, and personal insights on autism. From her professional endeavors to her deeply personal experiences as a mother of two neurodivergent children, she offers families a wealth of knowledge and practical strategies for navigating the complexities of raising children with autism. 

Here, we explore the key takeaways from the podcast, detailing actionable advice and valuable autism resources for families. 

Understanding Autism Is a Journey, Not a Destination 

One of the central themes from Dr. Gassner’s conversation with Jeff Skibitsky is that understanding autism is an ongoing process for both for families and individuals on the spectrum. Dr. Gassner, who was diagnosed with autism at age 40, shares how she and her son’s autism diagnoses shaped their respective paths. 

Her advice for parents? Accept that autism manifests differently in every individual. “Every feature of autism exists in every person with autism,” she explains. What differs is the level of impact these features have, and identifying your child’s unique needs will better equip you to cater to them effectively. 

Practical Tip – Learn Together 

Dr. Gassner advocates for creating a family-wide understanding of autism. Equip your household with tools to foster better communication and understanding. Books, podcasts, and webinars on autism can support this learning process. Knowing the “why” behind your child’s actions makes navigating challenges less stressful and more collaborative. 

Build Support Networks Early 

Dr. Gassner repeatedly emphasized the importance of finding or building supportive communities for families raising neurodivergent children. Whether it’s parent support groups, school-based services, or community-based organizations, you’re never alone. 

Finding the Right Community Leads to Better Outcomes 

Dr. Gassner’s family relocated twice to find schools that would support her son. Despite the upheaval, the move was life-changing, enabling her son to thrive both academically and socially. “If a school administrator stands in your way, it’s time to find a better environment for your child,” she advises. 

Practical Tip – Explore Local and Online Autism Resources 

Not every family can relocate for better services, but there are other ways to access support. Explore local organizations, advocacy groups, and online communities. Organizations like the Autism Society of America and The Arc may offer services such as workshops, parent mentorship opportunities, and resources for navigating school systems. 

Dr. Gassner also mentions the importance of creating sub-communities for shared experiences. She recounts starting the “Margarita Moms,” a group that created a safe space for mothers to connect, destress, and cope with the daily complexities of special needs parenting. 

Advocating for Your Child’s Needs 

Dr. Gassner shares vivid stories of advocating tirelessly for her children, especially her son’s educational needs. Advocacy, she explains, extends from the micro-level (pushing for classroom accommodations) to the macro-level (influencing autism research policy).  

She highlights the power of targeted accommodations. Even something as simple as adjusting testing methods and switching open-ended questions to a multiple-choice format—helped her son perform significantly better academically.

Practical Tip – Partner with Teachers and Administrators 

Open communication with your child’s educators is crucial. Meet with teachers and administrators early in the school year to discuss individualized education plans (IEPs) or Section 504 accommodations. Highlight specific adjustments that may help your child thrive, and continuously assess their effectiveness.  

Dr. Gassner also reminds families to choose their battles. Fighting against a system unwilling to change may yield fewer results than finding forums where your child’s strengths are recognized and celebrated. 

Fostering Independence Through Support 

An inspiring part of Dr. Gassner’s story involves her son graduating college and living independently. This milestone was achieved through years of providing consistent support while allowing space for him to grow.  

A Balanced Approach to Independence: Dr. Gassner emphasizes the value of gradually building self-reliance in children. “No one in this world is truly independent—we are interdependent,” she notes. Encourage independence in manageable steps, like teaching daily living skills or involving your child in decision-making. 

Practical Tip – Start with Small Wins 

Encourage independence by setting achievable goals, or what we call WOW moments. For example, teach your child to organize their schoolwork or prepare simple meals. Celebrate small accomplishments to build confidence and a sense of agency.  

For teenagers and young adults, involve them in career exploration or college preparation. Many organizations offer pre-employment programs and life skills training for neurodivergent individuals. 

The Importance of Autism Advocacy and Resources 

Throughout the podcast, Dr. Gassner highlights how advocacy at every level, including family, community, and policy, can uplift not only individual lives but the neurodivergent community as a whole. Access to appropriate autism resources, she says, remains a critical need. Her work at Drexel University involves promoting inclusive research and creating autism-friendly employment practices. 

Advocacy Beyond the Family  

Dr. Gassner’s federal policy work includes increasing equity in autism research funding. She argues that research dollars should reflect the spectrum of autism experiences, from those requiring high-support care to others who need minimal accommodations but still face challenges.  

She also discussed the barriers presented by systems meant to assist individuals, describing them as “manipulative and deceptive” in some cases. Her advice? Families must become informed, proactive systems navigators.  

Practical Tip – Get Familiar with National Autism Resources  

Explore organizations like Drexel University’s A.J. Drexel Autism Institute or private foundations that fund autism research and services. These organizations often share updates on resources, policy changes, and new advocacy opportunities.  

Dr. Gassner also encourages families to network with researchers and participate in studies when possible. Community-engaged research is becoming more common, ensuring the voices of actual stakeholders shape outcomes.  

Final Words of Hope  

Dr. Gassner’s story of triumph over adversity shows how advocacy, community, and love can create positive outcomes even amid challenges. No two families’ journeys will look the same, but the tools shared in this blog—from joining support groups to building strong home-school partnerships—offer practical ways to start addressing common challenges.  

For More Information  

To stay informed about autism resources, families can follow the A.J. Drexel Autism Institute on LinkedIn or connect with Dr. Gassner via her Facebook business page, "Center for Understanding."  

Every child deserves the tools to thrive—and as Dr. Gassner demonstrates, with the right support, the possibilities are endless.