All About Autism

Since 2004, PNC Grow Up Great has empowered children from birth to age 5 to unlock their curiosity and passion for lifelong learning. Through supporting and delivering dynamic programs, hands-on experiences, and valuable resources, we’re not only expanding educational opportunities for young minds, but also laying a foundation for stronger communities and a brighter future for generations to come. 

It has been a privilege to serve on the PNC Grow Up Great Advisory Council for several years. This role allows me to collaborate with a diverse group of dedicated professionals in early childhood education, all committed to driving transformative change across the sector. Together, we work to advance policy initiatives, advocate for increased funding of essential programs, and promote financial literacy starting at an early age. These efforts are vital in ensuring that every child has access to the support and tools they need to achieve their fullest potential. 

Later this week, I will be traveling to Pittsburgh to a PNC Advisory Board Council meeting, and I look forward to sharing what I learned with you during next week’s blog.  

Every October, we come together to celebrate Down Syndrome Awareness Month, a time to honor the voices, achievements, and rights of individuals with Down syndrome. While World Down Syndrome Day is officially observed on March 21, this month-long celebration is a powerful opportunity to raise awareness, promote inclusion, and advocate for equity. 

What is Down Syndrome? 

Down syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21—hence the name Trisomy 21. While most people have two copies of each chromosome, individuals with Down syndrome have three copies of chromosome 21. In some cases, this extra genetic material may appear as a translocation (attached to another chromosome) or exist in only some cells (mosaicism). 

2025 Themes: Empowering Identity and Equity 

This year’s campaign centers around four powerful themes: 

“I Am” – Celebrating Identity and Voice 

This theme invites individuals with Down syndrome to share affirmations that reflect their unique identities—“I am strong,” “I am a dancer,” “I am a leader.” It’s a celebration of self-expression and a reminder that Down syndrome does not define a person. Join the movement by sharing your story using hashtags like #IAM and #DownSyndromeAwarenessMonth. 

Health Equity 

Down Syndrome International is spotlighting the urgent need for inclusive healthcare. People with Down syndrome often face disparities in life expectancy and access to treatment. This campaign calls for systemic change to ensure everyone receives quality care—regardless of diagnosis. 

Strengthening Support Systems 

From education to employment, individuals with Down syndrome deserve robust support systems. This theme urges governments, schools, and communities to invest in inclusive programs that empower lifelong success. 

Advocacy and Education 

Organizations like https://gigisplayhouse.org/ and https://www.jacksbasket.org/ are leading the charge in educating the public, challenging stereotypes, and fostering inclusive environments. Learn more, get involved, and share their resources to help spread awareness. 

Ways to Celebrate and Participate 

• Wear Blue and Yellow: These are the official colors of Down syndrome awareness. 

• Rock Your Socks: Mismatched socks symbolize the uniqueness of chromosome pairs. 

• Support a Down Syndrome Organization: Donate, volunteer, or amplify their message. 

• Educate Yourself and Others: Host a lunch-and-learn, share facts, or start a conversation. 

• Celebrate Achievements: Highlight the talents and accomplishments of individuals with Down syndrome. 

Media That Inspires Understanding 

Explore books and films that respectfully represent the Down syndrome community: 

• Books: Count Us In by Jason Kingsley & Mitchell Levitz, The Lucky Few by Heather Avis 

• Films: The Peanut Butter Falcon, Intelligent Lives 

Share these with friends and family to encourage deeper understanding and acceptance. 

Advocate for Inclusion 

• Promote Inclusive Language: Use person-first language and speak out against stereotypes. 

• Champion Inclusion: In schools, workplaces, and communities—everyone deserves to belong. 

Let’s Build a More Inclusive World 

Down Syndrome Awareness Month is more than a celebration—it’s a call to action. By participating, educating, and advocating, we help create a world where everyone is valued and included. 

Let’s celebrate the beauty of diversity and the strength of community—this month and every month. 

One of my greatest sources of pride is being able to share the many success stories of students who get their start at the Elizabeth Lee Black School. We offer many programs that help young learners grow and thrive, and we understand that no two children are alike. 

Recently, Daniel Gillespie, a former student diagnosed with autism, reached out to share his achievements. Despite facing challenges alongside his brother David, who also has autism, both remained determined and overcame obstacles to lead fulfilling lives.

Daniel began receiving services from the Barber National Institute from an early age. Over time, he developed a wide range of skills, including strong time management skills, communication skills, and critical thinking skills. As he got older and graduated from high school, he worked with the Office of Vocational Rehabilitation to explore career paths and find jobs that utilized his diverse skillset. He worked at various jobs, including those in retail, health and fitness, and housekeeping. He wasn’t afraid to experience a variety of different work settings even though at times he may have felt overwhelmed. He ultimately determined that he wanted to pursue a college education.   

He graduated from Mercyhurst in May 2024 with a bachelor’s degree in criminal justice. It was his determination and openness that led him to become a courtroom tipstaff where he assists judges, reinforces courtroom order, and maintains case files. He said it’s a great way for him to apply what he’s learned. He shared that he enjoyed being part of the Barber National Institute growing up, and I can say wholeheartedly that it is a pleasure having an opportunity to see him grow and thrive.  

Daniel’s professional journey reflects a path of growth, resilience, and self-discovery shaped by his experiences with autism. Daniel and his brother David have launched a blog,  the Brown Side of Autism, where they share their personal perspectives and experiences as people with autism in the Black and Brown community. Through his work, he is creating greater awareness of the challenges – and strengths – of people with autism and all they can accomplish. I’m so proud of Daniel’s journey and know that he will continue to do great things on a professional and personal level.  

You can visit Daniel’s blog, Brown Side of Autism, at brownsideofautism.blogspot.com. 

When I learned the other day that the President would be addressing the country in what he referred to as one of the most significant announcements in American history regarding autism, I knew that I would tune in. 

Yes, I am pleased that our country is committed to determining the causes of autism as it impacts 1:31 children in the United States today.  There is no one who would not look favorably on such a goal. 

The administration is suggesting that acetaminophen usage during pregnancy may cause autism and therefore should be avoided and only be used in extreme cases.  The medical community disputes these findings and believes that this misinformation could harm pregnant women.  

Also discussed were childhood vaccinations and the possibility that they may contribute to the development of autism.  Again, there have been many scientific studies that dispute this statement.  Also announced was that the FDA will be updating the label of leucovorin which has been used to treat cerebral folate deficiency and now may be a potential treatment for speech related deficits in children with autism. It stressed that leucovorin is not a cure for autism, its benefits may be limited to a subset of children, and more studies are needed to assess safety and efficacy.  

I am not a physician nor a scientist but an educator and a parent who has closely followed this subject for the last 30 years.  Again, I applaud our commitment to follow science and determine the causes of autism and potential treatments.  I would strongly encourage you to speak with your physician as you consider these recommendations for yourself or your child. 

Autism is a spectrum disorder and if you know one person with autism, you know one person with autism.  There are many people with autism who are brilliant, Bill Gates and Elon Musk have commented that looking back at their childhoods, they probably had undiagnosed autism.  But there are many individuals with autism who have intellectual, behavioral or communication challenges and require support.  I believe that we value each person as an individual who contributes to a world in which we celebrate all people.  

Let the festivities begin! Tomorrow is Founder’s Day—a celebration honoring Dr. Gertrude Barber, whose vision continues to inspire the Barber National Institute. After months of preparation, all campuses are ready to enjoy activities such as dance, music, and special treats for staff and individuals, including a petting zoo at the Erie, Main Campus location. Though Dr. Barber passed away in 2000, her legacy still guides us as we celebrate her birthday and the Institute’s ongoing mission and achievements.

Dr. Barber’s dream began in 1952, when services for individuals with disabilities were rare. Her determination led to the founding of the Barber National Institute, empowering children and adults with disabilities to thrive in their communities. 

Notable recent milestones include: 

• A $3 million renovation of BNI’s therapeutic pool—originally built in 1979—is reopening in phases starting October 2025. The pool now features a liftable floor for wheelchair access and offers specialized programs for individuals with mobility challenges, reaffirming our commitment to wellness and inclusion. 

• The new Founder’s Room honors Dr. Barber’s legacy. The ribbon-cutting ceremony, attended by staff, residents, and community leaders, included a blessing by Fr. James Power, who has been appointed Postulator to the Cause of Gertrude Barber by Erie Bishop Lawrence Persico. Fr. Power will advocate for the canonization process.  The Founder’s Room is open to the public, Monday-Friday, 10 AM-2PM. 

• BNI continues as a trusted resource for families, professionals, and community organizations, offering flexible, outcome-based treatment and employment support programs. The Institute now serves over 5,400 individuals statewide and employs more than 3,000 professionals across Erie, Pittsburgh, Somerset, Bedford, and Philadelphia. 

Dr. Barber once said: 

“Our focus has continued to be a mission of faith, hope, and love – to open the doors where they were closed – to bring sunlight where there was darkness – faith where there was despair.” 

Today, the Barber National Institute continues to open doors through education, innovation, and compassion. As we celebrate Founder’s Day, let’s honor both our beginnings, the progress we have made and will continue to make throughout our future. That is our mission.   

This week, we proudly celebrate the extraordinary dedication of Direct Support Professionals (DSPs)—the unsung heroes whose work transforms lives every single day. Their compassion, resilience, and unwavering commitment create lasting change for individuals with disabilities and their families. 

Across the nation, DSP Recognition Week is led by the American Network of Community Options and Resources (ANCOR), a nonprofit representing over 1,600 private community providers. This week shines a spotlight on the direct support workforce—the backbone of care and advocacy for people with disabilities. 

At the Barber National Institute, DSPs play an essential role in helping individuals with intellectual disabilities, autism, and behavioral health challenges live full, independent lives. Their work is complex and deeply personal, supporting every aspect of daily living—from cooking and financial management to community engagement and emotional support. 

Whether it’s early mornings, late nights, weekends, or holidays, DSPs are there—in our day programs, group homes, and residential settings—providing care, dignity, and hope. They are caregivers, advocates, and trusted companions. Their presence brings peace of mind to families and empowers individuals to thrive. 

This week is our opportunity to recognize and uplift these remarkable professionals—not just in Erie, but across our footprint , including, Bedford, Philadelphia, Pittsburgh, Somerset, and Warren. Let us celebrate their talents, honor their contributions, and advocate for their continued support—not just this week, but all year long. 

I personally had the opportunity this week to go to some of our group homes and adult day programs and to say, “Thank You.” I was truly impressed with the loving care that our staff conveyed to our residents.  I asked one of the them what prompted her to consider a career  as a DSP and she shared that her Mom worked for us in our homes many years ago. She  would often bring a resident to their home for Christmas or Thanksgiving dinner.   

The resident became part of their family, and it is her goal to continue that calling.  

Through their compassion and excellence, Direct Support Professionals embody our mission of “making dreams come true for those we serve.” Let’s stand with them, speak up for them, and thank them—for being the heart of our community. 

Saturday, September 6 marks the 12th and final year of the Beast on the Bay. Participants run 10 miles on sand, water, and trails as they proved that they could Beat the Beast! We’re all geared up for the big day at Waldameer at the entrance of Presque Isle.   

A one-mile adapted course for those 12 years of age and above with special needs has  also been available since the Beast began. 

This annual event means so much to not only the Barber National Institute and those we serve, but the many participants, spectators, and volunteers.    

The Beast’s courses are known to be especially challenging, but participants know that these challenges pale in comparison to those faced by both children and adults with intellectual disabilities, autism, and behavioral health challenges. Coming together for a day of friendly competition and fun helps unite us in the goal of supporting the 6,200 individuals we serve and their families.    

I still remember Ryan’s first year participating in the Beast. Ryan did the adaptive course and if you know Ryan, you know that he is a FAST runner.  So, in a few minutes he navigated the adaptive course.  I suggested to him that he might want to try the 10-mile course the following year. He said that he’d think about it. The year quickly passed, and the second year of the Beast was here.  Two of his friends (helpers), Bryant and Craig did the Beast with him.  What did he hate?  The marsh.  He was not doing that again.  Craig and Ryan did the Beast for a few years, and then Brad, Logan, and for the last three years, Drs. Brian and Kate Stark.  The Starks are great supporters of the BNI so when I did not have anyone to Beast with Ryan they generously offered and have continued to run with him.  How would you recognize Ryan?  He is the one who is always smiling and no, he does not do the marsh! 

As we say goodbye to the Beast on the Bay, it’s both a proud and emotional moment. While this marks the end of the full event, we’re excited that the one-mile adapted course will continue in the years ahead. The Barber National Institute is committed to finding new and meaningful ways to engage our supporters moving forward. If you’re joining us for this final Beast, thank you for being part of something special. I am deeply grateful to every participant who has helped make this fundraiser a fun, memorable, and successful tradition! 

As the doors open to a new school year, the energy in our hallways is unmistakable—filled with the buzz of fresh starts, new faces, and renewed purpose. For educators and school leaders, this season is more than a calendar reset; it’s a moment to reflect, recalibrate, and recommit to the mission of nurturing every learner’s potential. 

Welcoming Change with Purpose 

This year, our school community welcomes a significant number of new students and staff. Many of these students arrive with unique needs—some experiencing school for the first time, others transitioning from environments that may not have fully supported their growth. Our role as educators, therapists, and behavior specialists is to meet each child where they are, identify their strengths, and tailor our instruction to ensure learning happens for every student  

We also recognize the importance of our families in this journey. Open communication—whether through Teams, daily notes, or phone calls—is essential. Parents are our partners, and their insights help us shape goals that are meaningful and achievable  

Staffing Realities and Resilience 

One of the most pressing challenges this year is staffing. While we’ve successfully onboarded new paraeducators, some face a steep learning curve in managing behavioral intervention plans or supporting nonverbal students with AAC devices. These gaps highlight the need for robust onboarding, ongoing professional development, and mentorship structures that empower staff to grow into their roles with confidence. We’ve strategically revamped our onboarding program to equip new staff with the tools and resources they need to success from day one.  

Technology and Innovation 

Technology continues to be a cornerstone of our educational approach. From assistive tools to classroom engagement platforms, we’re committed to using innovation to enhance learning. As seen in districts nationwide, AI and EdTech are opening new doors for personalized instruction and operational efficiency  

Opportunities for Growth 

Despite the challenges, this year presents incredible opportunities: 

• Family Engagement: We’re exploring new ways to involve families, from virtual classroom visits to parent-led events  

• Inclusive Practices: Our commitment to equity and individualized support remains strong, bolstered by policy shifts and community partnerships  

• Professional Development: We’re investing in training that equips staff to meet diverse student needs with empathy and expertise  

Together, we’ll make it one to remember. 

Today is the first day of the 2025-26 school year. I wanted to share my opening remarks with our faculty and staff.  

Good morning, everyone — and welcome back for the 2025-26 school year! 

I hope your summer was fun and that vacation gave you time to rest and recharge. As we step into a new school year, I want to take a moment to recognize the heart of our mission: you.  

Your dedication, creativity, and care shape not just classrooms, but our students’ futures. Every hallway, every lesson, every moment of connection — it all starts with you. 

This year isn’t just about returning to familiar routines—it’s about gaining new momentum. With innovative resources, renewed energy, and our collective pursuit of excellence, we’re poised to make a meaningful difference. Technology will remain central to our approach, serving both as a catalyst for learning and a tool to engage and empower everyone in our community. 

Let’s embrace innovation, lean into collaboration, and continue to nurture a culture where every student feels seen, supported, and inspired. Together, we can make this year one to remember. 

Thank you for all you do. We’re here for you and want you to succeed.  

Let’s have a great year! 

With summer in full swing, we wanted to let our wonderful readers know that the All About Autism Blog will be taking a well-deserved break. We’ll be back with fresh, insightful content when school resumes in late August. We deeply appreciate your continued support and engagement with our blog. Your interest and feedback have been invaluable, and we look forward to bringing you more inspiring and helpful content in the upcoming school year. Have a fantastic summer, and thank you for being a part of our community!