Autism Resources – Autism Connection of Pennsylvania

Chris holding a NCSA folder at Capitol Hill

Beyond Awareness: Reflections from My First National Council on Severe Autism Authentic Awareness Autism Assembly

From Awareness to Action

Walking into the National Council on Severe Autism’s 2026 Authentic Awareness Autism Assembly, I immediately sensed this conference was different. Parents, family caregivers, researchers, advocates, clinicians and nonprofit leaders had gathered with a shared purpose: improving the lives of people with severe and profound autism. Many parents attended alongside their children or adult children, making the Assembly itself a reflection of the community it was designed to serve.

I attended on behalf of Autism Connection of Pennsylvania, but I also came as a parent. Although it was my first NCSA Assembly, it quickly became clear why so many families return each year. The conversations were honest, respectful, and grounded in lived experience. Rather than discussing individuals with severe autism from a distance, the conference centered on their daily lives and the families who support them.

As I listened, I found myself thinking about the conversations we have every day with Pennsylvania families. Questions about housing, adult services, staffing shortages, crisis response, healthcare, and future planning weren’t simply conference topics. They were the same challenges families bring to Autism Connection of Pennsylvania every week. The Assembly reinforced that these concerns are shared by families across the country.

Throughout the conference, one phrase appeared again and again: Authentic Awareness. It challenged participants to move beyond simply recognizing autism and instead ask a more meaningful question: What does authentic awareness require if we truly want to improve people’s lives?

Three themes emerged throughout the Assembly.

The first was recognition. People with severe and profound autism, along with the family members who often support them for decades, deserve to be fully represented in research, healthcare, public policy, and national conversations about autism.

The second was policy. Families understand where systems succeed and where they fall short because they navigate those systems every day. Speakers emphasized that effective public policy should be informed not only by research and professional expertise but also by lived experience.

Finally, there were solutions. Discussions focused on strengthening the direct support workforce, expanding housing opportunities, improving crisis services, collecting better data, and ensuring meaningful supports remain available throughout a person’s lifetime.

The Assembly reflected that progression. The first day focused on learning through presentations on research, Medicaid, workforce challenges, caregiver well-being, supported living, and advocacy training. The second day shifted from learning to action as participants traveled to Capitol Hill to meet with members of Congress and their staff. In addition to the two-day Assembly, participants took part in two two-hour virtual training sessions beforehand to prepare for congressional visits, followed by a 90-minute post-Assembly Zoom meeting to share experiences, report on Hill visits, and discuss next steps for ongoing advocacy.

For me, one presentation stood out above the rest. It didn’t introduce a new treatment or announce a major legislative victory. Instead, it focused on something equally important: the experiences of family caregivers.

Listening to Families: What the Caregiver Survey Revealed

One of the Assembly’s most compelling presentations highlighted findings from the National Council on Severe Autism’s 2025 Family Caregiver Survey, developed through NCSA’s Voices for the Voiceless legislative initiative. Conducted during August and September 2025, the survey gathered responses from 1,289 parents and caregivers representing all 50 states and Washington, D.C., providing one of the clearest national snapshots of life for families supporting loved ones with severe autism.

The findings echoed what many families already know from experience.

Most caregivers are in midlife, with nearly two-thirds between the ages of 45 and 64. Many are balancing careers, their own health, aging parents, and the lifelong responsibility of caring for a son or daughter with significant support needs. The survey underscored the importance of beginning future planning early, while parents can still help shape decisions about housing, services, and long-term care.

Housing and staffing emerged as two of the greatest concerns. Nearly 74% of individuals represented in the survey still lived at home with family, reflecting both the extraordinary commitment of caregivers and the limited availability of long-term housing options. At the same time, only 21% of respondents reported having reliable in-home staffing. Even when Medicaid services are approved, many families cannot access them because qualified direct support professionals simply are not available.

The survey also revealed the challenges families face during times of crisis. Nearly 63% reported that their loved one had experienced a behavioral or psychiatric crisis, yet many struggled to find emergency services equipped to meet the needs of individuals with severe autism. Traditional emergency settings are often not designed for autism-related communication differences, sensory needs, or complex behavioral presentations.

Perhaps the most striking finding was that 79% of caregivers had been told their loved one was “too severe” or “not a good fit” for a program or service. For many families, the greatest obstacle is not a lack of determination but a shortage of programs prepared to support people with the most challenging needs.

Future planning presented another sobering reality. Only 12% of caregivers reported having a concrete long-term care plan for their loved one. Presenters emphasized that this reflects more than personal planning. It also reflects the limited housing, staffing, funding, and service options available to families trying to prepare for the future.

More than anything, the survey reinforced why caregiver voices matter. Reliable national data helps policymakers understand not only how many families are providing care, but also the challenges they face every day. For me, the findings were deeply familiar. They mirrored the questions we hear regularly from Pennsylvania families and reinforced that these are national challenges deserving thoughtful attention from researchers, service providers, and policymakers alike.

The survey didn’t simply document problems. It helped explain why so many of the Assembly’s policy discussions focused on strengthening the systems families rely on every day.

Understanding the Policy Conversations

One of the Assembly’s most important messages was that policy is about far more than legislation. It shapes the services families can access, the support available in their communities, and the options they have as they plan for the future. Throughout the conference, speakers connected complex policy discussions with the everyday realities families experience.

A recurring theme was the importance of understanding acuity, or the intensity of an individual’s support needs. Two people may share an autism diagnosis while requiring very different levels of support for communication, daily living, behavior, medical care, or supervision. Speakers emphasized that collecting better data about those differences is essential if policymakers hope to direct resources where they are needed most.

Home and Community-Based Services (HCBS) also received significant attention. These Medicaid-funded supports help people with disabilities live and participate in their communities through services such as personal care, respite, behavioral supports, employment assistance, and community participation. Yet families often face another reality: services may exist on paper but remain difficult to access because providers lack the staffing or specialized training needed to support people with complex needs.

That challenge led to one of the conference’s central themes: the direct support workforce. Families may qualify for services, but without enough trained professionals, those services cannot become reality. Speakers stressed that strengthening this workforce requires competitive wages, specialized training, professional recognition, and long-term investment in recruiting and retaining experienced staff.

Another proposal focused on family caregivers themselves. Rather than creating a new federal program, the National Council on Severe Autism encouraged Congress to dedicate approximately $5 million of existing Autism CARES Act funding toward a comprehensive national study of family caregivers supporting people with severe autism.

Modeled after research conducted by the Elizabeth Dole Foundation on military caregivers, the proposed study would examine caregiver health, workforce participation, financial impact, long-term planning, access to services, and the specialized care families provide every day. Organizers emphasized that better information can lead to better decisions by helping policymakers understand where supports are working and where significant gaps remain.

One message stayed with me throughout these discussions: meaningful policy begins with meaningful information. Better data alone cannot solve every challenge, but it provides a stronger foundation for building services that reflect the realities families face every day.

From Conference Room to Capitol Hill

The Assembly’s second day transformed learning into action.

After spending the first day exploring research, policy, and advocacy, participants traveled to Capitol Hill to meet with members of Congress and their staff. The goal was simple: bring the experiences of people with severe autism and their families directly to the people helping shape public policy.

My first meeting was with staff from Senator John Fetterman’s office. I attended alongside Amy S. F. Lutz, Vice President of the National Council on Severe Autism. Amy shared the story of her son while I shared Eva’s story. Although our families’ experiences are different, both reflected many of the same themes discussed throughout the Assembly: the importance of dependable services, long-term planning, a strong direct support workforce, and ensuring meaningful supports continue throughout adulthood.

Sharing Eva’s story allowed me to speak not only as a representative of Autism Connection of Pennsylvania but also as a parent. For a few moments, statistics gave way to a daughter’s story, reminding all of us why those policies matter in the first place. The conversation became more than a discussion about services. It became a conversation about a real person, her daily life, her strengths, and the supports that allow her to participate in her community. The staff listened carefully, asked thoughtful questions, and created a genuine dialogue.

Later, I met with staff from Congressman Chris Deluzio’s office, where I again shared Eva’s story alongside the experiences of families who contact Autism Connection of Pennsylvania every day. Families reach out with questions about diagnoses, education, adult services, housing, respite, benefits, and future planning. The concerns discussed in Washington mirror the conversations taking place here in Pennsylvania.

Those meetings reinforced one of the Assembly’s most important lessons: research and personal stories are most effective when shared together. Data helps policymakers understand the scope of an issue, while families help them understand what those numbers mean in everyday life. Together, they create a stronger foundation for informed public policy.

Looking Ahead

Leaving Washington, I found myself thinking less about individual presentations and more about the people behind them.

I thought about parents asking difficult questions about their children’s futures, researchers working to better understand severe autism, professionals striving to improve services, and individuals with severe autism whose lives should remain at the center of every conversation.

The questions raised throughout the Assembly were the same ones we hear every day at Autism Connection of Pennsylvania.

How do I prepare my son or daughter for adulthood?
Where can I find qualified support staff?
What happens during a crisis?
How do we plan for housing?
Who will care for my loved one when I no longer can?

The Assembly didn’t pretend there were easy answers. Instead, it brought together families, researchers, clinicians, advocates, policymakers, and community organizations with a shared commitment to improving the lives of individuals with severe autism.

As I traveled home from Washington, I kept thinking about how closely the national conversations mirrored the questions we hear every day at Autism Connection of Pennsylvania. Decisions made in Washington shape the services available in our communities, while the experiences of local families help shape those national conversations. That connection reminds me why our work matters: helping autistic people of all ages, families, educators, and professionals find reliable information, practical resources, and the next step forward.

I am grateful to the National Council on Severe Autism for creating an Assembly that challenged participants not only to learn, but to act. As a first-time attendee, I left with a deeper appreciation for the power of bringing research, professional expertise, and lived experience together.

For me, that is what Authentic Awareness truly means. It is more than understanding autism. It is listening to families, learning from lived experience, and turning that understanding into action so individuals with severe autism, including my daughter Eva, have the opportunity to live safe, meaningful, and fulfilling lives.

police officer demonstrating Project Lifesaver to a child

2026 Autism Safety Expo

Some of the best ideas become traditions because a community embraces them. That’s exactly what happened with the Autism Safety Expo.

When Autism Connection of PA hosted our inaugural Expo last year, we hoped it would bring together families, autistic people, first responders, educators, healthcare professionals, and community organizations to share resources and strengthen autism safety. The response was overwhelming. New partnerships were formed, families discovered services they didn’t know existed, and countless meaningful conversations reminded us how much we can accomplish when we come together.

Because of that incredible success, we’re excited to announce that the Autism Safety Expo is now an annual event.

Please join us on Friday, October 30, 2026, from 9:00 a.m. to 5:00 p.m. at Monroeville Fire Company #4, 4370 Northern Pike, for a full day of education, practical resources, interactive exhibits, and opportunities to connect with organizations dedicated to supporting autistic people of all ages and their families.

At Autism Connection of PA, we believe safety is about more than emergency preparedness. It’s about creating communities where autistic people are understood, supported, and included. Whether you’re a family member, self-advocate, first responder, educator, healthcare professional, or community partner, you’ll find valuable information, new connections, and practical tools that can make a difference.

We invite you to save the date, share the event with others, and watch for more details in the coming weeks. We look forward to welcoming you this October as we continue building safer, more informed, and more inclusive communities across Pennsylvania, together.

Email help@autismofpa.org with questions.

Email development@autismofpa.org for sponsor and vendor information.

The 2026 Autism Safety Expo is free to attend, and no registration is required.

Traveling Together: Tips for Families of Autistic People with High Support Needs

Family vacations rarely go exactly as planned. When an autistic family member has high support needs, travel often requires even more flexibility, preparation, and patience. But that doesn’t mean meaningful travel experiences are out of reach.

In fact, some of the most memorable trips aren’t the ones where everything went perfectly. They’re the ones where everyone felt safe, supported, and able to enjoy a special moment together.

One of the most important things families can do is choose a destination that fits the person’s needs, rather than trying to fit the person into a destination. Before booking, think about what will help your family member be comfortable. Is there a quiet place to take breaks? Are familiar foods available? Will there be opportunities to rest and recover from busy activities?

For many autistic people with high support needs, the place you’re staying can be more important than the attractions you plan to visit.

Choosing a Place to Stay

When renting a home, condo, or cabin, look beyond the beautiful photos. Consider practical details such as safety, noise levels, accessibility, parking, and whether there is enough space for everyone to decompress when needed. A simple, predictable environment is often a better choice than one that is exciting but overwhelming.

Bringing familiar supports from home can also make a big difference. Items that provide comfort and routine can help reduce stress and make new environments feel more manageable. Consider packing:

Favorite comfort items
Noise-canceling headphones or sensory tools
Preferred snacks and drinks
Communication devices and chargers
Medications and medical supplies
Downloaded music, videos, or apps

These items are not extras. They are important supports that help people feel secure and regulated.

Travel Plans

Travel days themselves can be challenging. Whether you’re driving or flying, try to build flexibility into the schedule. Allow extra time, plan for breaks, and remember that slowing down is often better than pushing through. Many families find it helpful to focus less on seeing everything and more on creating a pace that works for everyone.

If you’re flying, it may be worth exploring disability supports offered by airports and airlines. Services such as pre-boarding, assistance navigating crowded terminals, and other accommodations can help reduce stress before the trip even begins.

Passenger Support | Transportation Security Administration

For families with multiple children, it’s important to remember that siblings are traveling too. They may understand why plans sometimes change, but they still need opportunities to be included and valued.

Considering the Entire Family

Before the trip, consider asking each child what would make the vacation feel special to them. Sometimes the answer is something simple. It could be a favorite restaurant, a trip to an arcade, extra pool time, or a one-on-one outing with a parent. Protecting those moments whenever possible helps everyone feel like their needs matter.

It’s also okay for siblings to have mixed feelings. They may feel disappointed when plans change or frustrated when a situation becomes stressful. Creating space for those feelings, without judgment, helps children feel heard and supported. For some families, it works to allow the sibling to bring a friend along. When that’s not an option, there may be opportunities for one parent to visit attractions with the sibling that might be overwhelming for the autistic child.

Just as important, caregivers need support too. Managing safety, communication, routines, meals, medications, and travel logistics can be exhausting. If possible, share responsibilities, keep expectations realistic, and build recovery time into the days before and after your trip.

A Simple Message about Successful Trips

At the end of the day, success doesn’t have to mean checking every attraction off a list.

A successful trip might mean that everyone got enough sleep. It might mean finding a quiet beach, sharing a favorite meal, enjoying an afternoon at the pool, or watching a child smile during a new experience. It might simply mean that everyone felt safe, respected, and cared for.

Those moments count.

Traveling with an autistic family member who has high support needs may look different from what others expect a vacation to be. That’s okay. When families focus on support, flexibility, and connection instead of perfection, they create space for something even more meaningful, the chance to experience the world together.

Thanks to attendees and facilitators of the Caring for Loved Ones with High Support Needs group for sharing ideas and experiences. Those interested in joining this support group can visit our Events Page for registration, or email help@autismofpa.org for more information.

Indoor Activities for Complex Needs

At Autism Connection of Pennsylvania, we believe meaningful activities don’t have to be loud, busy, or demanding. For many autistic people, especially those with higher support needs, the most powerful experiences are the ones that support regulation, safety, and choice.

Whether activities happen in a community space, at home, or online, what matters most is that people are free to engage in ways that feel right to them. Here are some activity ideas and guiding principles that help make that possible.

Sensory Activities: Supporting Calm and Regulation

Sensory activities can help the nervous system settle. These spaces and tools are designed to be soothing, predictable, and flexible.

Think:

Quiet sensory rooms with soft or dim lighting
Bubble tubes, fiber optic lights, or projected visuals
Weighted blankets or lap pads for grounding
Soft textures to explore, like fabric, gel pads, or water beads
Preferred music or calming background sounds

There’s no “right” way to use sensory supports. Some people stay for a long time. Others take a quick break and move on, and that’s okay.

Creative Activities: Exploration Over Outcome

Creative activities aren’t about finishing a project or making something “look right.” They’re about exploring materials and enjoying the process.

Options might include:

Painting with hands, sponges, or rollers
Squeezing and shaping clay, dough, or putty
Light tables or glow-based art activities
Music play with drums, shakers, or chimes

Participation can look like watching, touching briefly, or repeating the same motion again and again. All of it counts.

Movement Activities: Helping the Body Feel Safe

Movement can be regulating, especially when it’s gentle and predictable.

Supportive movement activities include:

Slow stretching or simple yoga poses
Rocking chairs or supported indoor swings
Walking paths with clear visual cues
Soft obstacle courses made with mats and pillows

These activities aren’t about exercise or performance; they’re about comfort and body awareness.

Engagement Activities: Supporting Focus and Interest

Some activities help with attention and connection without requiring social interaction.

These might involve:

Sorting or matching favorite items
Cause-and-effect toys or switches
Simple routines done the same way each time
Choice boards using pictures or real objects

Familiarity and repetition can be reassuring, building trust and confidence.

Social Groups: Shared Space, Not Forced Conversation

Social groups don’t need talking to be meaningful. Often, simply being together in the same space is enough.

Small Group Options

Sensory play groups
Music and rhythm groups
Quiet groups built around shared interests
AAC-supported communication groups

Family-Supported Groups

Parent–child sensory groups
Sibling-friendly indoor play times
Caregiver-supported adult groups

These groups work best when expectations are low and support is built in.

What Matters Most

Across all activities and groups, a few principles make the biggest difference:

No pressure to interact
Parallel play is welcome
People can come and go as needed
All forms of communication are respected

Belonging should never be tied to behavior, speech, or participation.

Indoor Events: Predictable and Calm

Indoor events are often more accessible when they follow a clear routine and keep sensory demands low.

Ongoing Events

Sensory-friendly movie days
Open sensory gym or playroom hours
Quiet craft or activity times
Weekly clubs with the same schedule each time

Special Events

Sensory-friendly holiday gatherings
Autism-friendly expos with quiet spaces
Story times using objects, visuals, or AAC
Music or performance events designed for people with profound autism

In-Home and Virtual Options: Flexibility Matters

Not everyone can attend in person—and they shouldn’t have to miss out.

Accessible alternatives include:

Virtual sensory activities
Recorded calming routines
Online groups that use visuals or AAC
Flexible options families can use at home

Choice and access should extend beyond physical spaces.

What Makes Activities Truly Accessible

Accessibility isn’t about one feature. It’s about the whole experience. The most supportive activities include:

Visual schedules shared ahead of time
Clear beginnings and endings
Real choice, without pressure
Trained, understanding staff
Respect for non-speaking communication
No requirement to “participate” in order to belong

When we design activities this way, we create spaces where autistic people can feel safe, regulated, and genuinely included, exactly as they are.

At Autism Connection of PA, that’s the kind of connection we’re working toward every day.

Call to Action for Providers

Are you offering autism-friendly activities or support for autistic people with complex needs?
Make sure families can find you by listing your program at autismofpa.org.

Families are actively searching for safe, accessible indoor activities for people with profound autism. Providers can help by ensuring their programs are listed in Pennsylvania’s statewide autism resource directory.

Email tammi@autismofpa.org to share your services and reach families who need them.

By listing your autism-friendly activities, social groups, or events, you help families find options that respect sensory needs, communication differences, and safety without forcing participation.

Join us in expanding access across Pennsylvania.

Language Matters: Why Disability Slurs Hurt—and What We Can Do About It

Until we recognize that autistic people and people with disabilities are valuable, capable human beings, we will continue to lose words that were originally meant simply to describe a demographic. Over time, everyday language gets twisted, misused, and weaponized—turning descriptive terms into insults. When that happens, the people connected to those words become targets too.

This cycle harms more than vocabulary. It harms people.

When Words Become Weapons

Many disability-related terms began as neutral descriptions. But because our society has long underestimated, excluded, or stigmatized people with disabilities, those words often slid into the realm of slurs. We see this most clearly with the R-word—once a clinical descriptor, now a widely recognized insult.

The problem isn’t the word itself.
The problem is how our culture has treated the people behind it.

If a group is not respected, their label becomes a punchline.
If a group is devalued, their identity becomes shorthand for “lesser than.”

Autistic people and families tell us that the impact is anything but harmless.

The Real Impact on Autistic People and Families

A parent recently shared with us:

“The slur-hurling is making us (autistic people and their families) feel like we’re ‘lesser than’. We’re not seen as deserving of services or help by the general public if we’re seen as a punchline. Or worse, we’re invisible because everyone is trying to make autism look like it’s less severe than what it is. Language does matter.”

This is the lived experience behind the jokes, memes, and “I didn’t mean it that way” excuses.

Slurs do more than sting. They influence whether someone is seen as deserving of support, empathy, or even basic dignity. They shape how teachers respond, how communities include, how neighbors interact, and how policymakers prioritize services.

When people become jokes, they also become invisible.

Minimizing Autism Doesn’t Help Anyone

There’s a growing cultural tendency to soften or minimize the challenges many autistic people face. While positive stories and strengths-based perspectives are important, they cannot erase the need for support, services, and understanding—especially for those with high support needs.

When autism is treated like a quirky personality trait rather than a legitimate disability, families may encounter disbelief, judgment, or outright dismissal.

And when slurs are used casually, it reinforces the idea that autism, intellectual disability, or developmental differences are inherently negative. Or worse, something to mock.

Respect Starts With Language

Changing the way we speak is not about being “overly sensitive” or enforcing “political correctness.” It is about recognizing the full humanity of autistic people and people with disabilities.

Words can:

reinforce stigma
block access to support
shape public attitudes
affect policy decisions
influence how people treat one another

Respectful language creates safer and more inclusive spaces. It signals that people with disabilities are real, valued members of our communities, not punchlines, burdens, or stereotypes.

What We Can Do

Everyone plays a role in reducing harm and building a more inclusive culture. Here’s where we can start:

1. Retire disability slurs—including the R-word—completely.
Even “as a joke,” they reinforce harmful beliefs.

2. Speak up when you hear others use them.
A simple “That word hurts people. Could we choose something else?” can make a difference.

3. Learn from disabled voices.
Autistic people and their families are telling us what they need. Listening is the first step.

4. Use language that reflects dignity.
People-first or identity-first language is always better than a slur.

5. Model respect in everyday conversation.
Kids, coworkers, and community members learn from what we say.

A Community Built on Respect

Autistic people and families deserve to be seen, heard, and valued. When we change our language, we help change our culture—and we make space for understanding instead of mockery, connection instead of stigma.

Language does matter.
And so do the people behind it.

If you or your family need support, Autism Connection of Pennsylvania is here to help.

Autism Safety Expo 2025

PRESS RELEASE: THURSDAY, JULY 10, 2025

Autism Connection of Pennsylvania Presents Inaugural Safety Expo in Concert with the Jefferson Center for Autism and Neurodiversity

Monroeville, PA: Autism Connection of Pennsylvania, in concert with the Jefferson Center for Autism and Neurodiversity in Philadelphia, is proud to announce its first-ever Autism Safety Expo; a comprehensive two-day event devoted to promoting safety in the home and the community for people of all ages and stages on the autism spectrum and their families.

Autism Connection of Pennsylvania’s Safety Expo is important because it brings together critical resources that help ensure the well-being of autistic people in nearly every aspect of life, from their homes to schools to public spaces. Many families and self-advocates struggle to navigate complex systems when it comes to legal rights, medical needs, emergency preparedness, and physical and social safety. This Expo offers a rare opportunity to access all of that information in one place, with trusted experts who understand the unique challenges faced by the autism community. By creating a safe, inclusive space for learning and connection, the event empowers individuals and families to proactively build safer, more supportive environments.

Dates & Location

Friday, October 17, 2025 | 9:00 AM – 4:00 PM
Saturday, October 18, 2025 | 9:00 AM – 12:00 PM
Monroeville Volunteer Fire Company #4
- 4370 Northern Pike, Monroeville, PA 15146

Expo Highlights and Resources

This “one-stop-shop” experience invites families, caregivers, autistic people, professionals, and community members to access vital safety solutions covering:

Legal Safety: Guardianship, special education law, rights under the Americans with Disabilities Act, and access to legal aid organizations.
Medical Safety: Including sensory-friendly best practices, medical ID tools, emergency-preparedness plans, and how to navigate healthcare settings comfortably
Community and Social Safety: Safe travel, public‐space accessibility, social-skills training, and resources on self-advocacy and community inclusion.
Technology and Adaptive Tools: Exhibitors showcasing assistive tech, safety-alert devices, home-monitoring systems, and calming sensory aids.
First Responders Engagement: In person discussions with fire, police, and EMS personnel to build understanding of autism-friendly response protocols.
Caregiving & Family Support: Peer support groups, respite resources, and guidance from social-service agencies.

Why Safety Matters

Autism Connection of Pennsylvania surveyed autistic people, families, and caregivers about their greatest concerns. Safety is the utmost priority for people of all ages living in both rural and urban areas, and with different levels of need. In response, the Autism Connection is organizing this event to connect people with critical resources.

Safety is multidimensional: legal, medical, social, and environmental. By bringing together experts from each domain, the Autism Safety Expo offers resources to autistic people and families to proactively build environments, knowledge, and community systems that support neurodiverse safety.

About Autism Connection of PA
Since 1996, Autism Connection of PA has served as a trusted resource for families and professionals across the state, offering support groups, educational workshops and webinars, advocacy, and information on art, justice, school, and lifelong planning.

About Jefferson Center for Autism and Neurodiversity
A division of Jefferson Health, the Center champions neurodiverse-aware design and clinical practices, highlighted by its sensory-inclusive Honickman Center in Philadelphia’s city center.

The official registration and financial information of Autism Connection of PA may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.

Interview with Ayana Singh: Science, Empathy and Innovation

Autism Connection of Pennsylvania is thrilled to be chatting with Ayana Singh, a high school freshman who’s already making an impressive impact in the world of science and advocacy. In 2024, she created a well-being and sensory journal for caregivers and people with autism spectrum disorder (ASD) to track progress and day-to-day life online. This year, she created a machine learning model that uses functional magnetic resonance imaging (fMRI) scans to predict autism severity.

Both projects were presented at the Carnegie Science Center as part of the Pittsburgh Regional Science and Engineering Fair (PRSEF), winning notable awards from the U.S. Naval Research Office, Pittsburgh Intellectual Property Law Association, and more.

Inspired by her close family ties to autism, she’s passionate about using technology to make a real difference. We’re excited to hear about her journey, what drives her, and what’s next on her incredible path.

Ayana standing next to her science fair project

Background and Inspiration

What first inspired you to begin researching autism and sensory well-being at such a young age?

What first inspired me to begin researching autism and sensory well-being at such a young age was a deeply personal experience within my own family. My sister and my cousin are the same age, and when they were around 2.5 years old, we began noticing clear differences in their development—differences that raised questions none of us had answers to at the time. Eventually, my cousin was diagnosed with autism in India, but even after the diagnosis, my family struggled to access consistent therapy and support.

Witnessing this made me realize how much of a gap there is in autism awareness, diagnosis, and sensory support systems in many parts of the world, especially compared to the research and resources available in the U.S. That contrast motivated me to dig deeper, and to explore how I could use science, data, and innovation to help families like mine better understand autism and support neurodivergent individuals more effectively. It became more than research, and a personal mission.

How have your personal experiences with family members on the autism spectrum influenced your research?

My personal experiences with family members on the autism spectrum have been the foundation of my interest in this field. Last summer, I had the opportunity to teach piano to a young girl on the spectrum who was the same age as my sister and cousin. That experience was eye-opening. I saw firsthand how deeply she connected with music, how it calmed her and how she seemed to process it in a completely unique way. It made me realize that there are so many dimensions to autism that are still not fully understood. That moment really deepened my curiosity and inspired me to explore different aspects and potential markers of ASD through research.

What drew you to the intersection of neuroscience and machine learning for your project?

What drew me to the intersection of neuroscience and machine learning was a gradual but deeply personal journey. My first project related to autism focused on developing a software program that tracked sensory well-being. It was my personal response to the challenges my family faced in trying to understand and support the unique sensory needs of my cousin, who is on the autism spectrum.

As I learned more, my curiosity expanded to the possibility of early detection—how powerful it could be for families to receive timely support. That led to my second project, which explored how technology, particularly machine learning, could be used to identify early markers of ASD in a way that’s accessible and scalable across different regions, including countries like India where resources are limited. This naturally brought me to neuroscience and neuroimaging data, where machine learning can help uncover patterns that might otherwise go unnoticed. It felt like the perfect intersection of science, empathy, and innovation.

Research and Development

Could you walk us through your project — how does your machine learning model use fMRI scans to predict autism severity?

My project focuses on using fMRI data and machine learning to predict autism severity, offering a neurobiological alternative to current tools like ADOS and ADI-R, which don’t reflect brain-based changes over time. EEG and eye-tracking studies have tried to address this gap, but they can be uncomfortable for autistic individuals. I aimed to build a non-invasive, adaptable model grounded in brain function.

I used data from ABIDE II, the most recent publicly available ASD dataset. After preprocessing the fMRI scans in Python [programming language], applying brain masks and extracting BOLD signals, I segmented each participant’s brain into clusters using K-Means, grouping brain voxels [three-dimensional representation of brain tissue] based on signal similarity. This helped me analyze whether certain brain regions contribute to autism traits.

Next, I selected key clinical and imaging features such as age, IQ, and BOLD-based brain clusters, and input them into a Random Forest model, chosen for its ability to handle complex data and prevent overfitting. I optimized the model and used feature importance analysis to evaluate which inputs best predicted the ADOS-2 total severity score. My model achieved 87% accuracy (R²), which is high compared to existing studies. In the long term, this model could allow updated, scan-based severity assessments across the lifespan, addressing how autism manifests differently over time, while staying non-invasive and clinically useful.

What were some of the biggest challenges you faced while developing your model?

The biggest challenge which I experienced was preprocessing the fMRI scans which means removing excess noise and clutter from the scans. I had difficulty because I had never done it before, and there were few easy-to-understand resources online. To overcome it, I tried various methods such as employing different python tools and researching implementation.

How did you learn the technical skills necessary to work with machine learning and fMRI data while still in middle school?

I have been learning how to code ever since I was in fifth grade. My first introduction to programming was from mentors at the nonprofit Steel City Codes, which I am now a part of and have decided to give back as a mentor myself.

Was there a specific moment during your research when you realized you were onto something exciting?

The first moment of amazement was definitely seeing the fMRI scans. Afterwards, when I was visualizing the results of the model in scatter plots and different types of charts, I felt hope that the project was moving in the right direction and progress was being made.

An fMRI scan from Ayana’s project

Recognition and Impact

How did it feel to have your work recognized by the Carnegie Science Center?

Since I am still a high schooler, one of the places I can bring my project and get people’s attention on this topic is the Carnegie Science Center. I really am thankful to the PRSEF who gives us this platform to share and talk to experts, judges, and sponsors with similar experiences and research.

What does it mean to you to have your work shared with organizations like the Autism Connection of Pennsylvania?

It means a lot to have my work shared with organizations like the Autism Connection of Pennsylvania. It inspires me to engage with organizations and nonprofits that share a common goal of improving the lives of people with ASD. Knowing that my research aligns with their mission gives me hope that, together, we can create a future where people with autism have access to better support, understanding, and resources.

How do you hope your research will contribute to better treatment planning for autistic people?

I hope my research will lead to more personalized and up-to-date treatment plans by providing a non-invasive, brain-based way to assess autism severity, helping clinicians track changes over time and tailor therapies more effectively.

Leveraging fMRI and Machine Learning to Analyze Gender Disparities in ASD Severity Prediction

Personal Insights

Many students your age are just beginning to explore science. What advice would you give to young researchers who want to take on ambitious projects?

My advice is to start with a question or topic that genuinely means something to you, even if it feels big. Break it into smaller steps, be curious, and don’t be afraid to learn things as you go. Ask for help, learn, and don’t give up on your project(s).

How do you balance your academic work with your independent research projects?

My weekends are devoted to research and any other extracurriculars. Whenever I have time on the weekdays, I am excited to work on researching and learning more.

What has been the most rewarding part of your research journey so far?

The most rewarding part of my research journey has been seeing everything come together, the model actually working, the data making sense, and the results matching what I hoped to find. But even more than that, sharing it with others whether in presentations or papers, and seeing people understand and care about the impact has been incredibly fulfilling.

Future Plans

Are there any next steps or new ideas you’re excited to explore based on your current project?

I want to finish writing my research paper and eventually turn my model into a publicly accessible tool. My goal is to make it available in under-resourced regions, including countries like India, where support for people with autism is often more limited compared to places like the United States.

Looking ahead, do you envision a career combining technology, medicine, and advocacy for neurodivergent people?

In the future, I aspire to become a neurologist, where I can combine research with clinical work. I hope to focus on developing innovative technologies that improve the diagnosis and treatment of neurodivergent people, while also advocating for better support and awareness in underrepresented communities.

Reflection

What is one lesson you’ve learned through this experience that you will carry with you in your future work?

One lesson I’ve learned is the importance of persistence as research doesn’t always go as planned, and being adaptable is crucial. Many aspects of my project didn’t go as expected, and I found myself stuck at certain steps or facing unexpected issues. There
were times when I wanted to quit due to these challenges, but if I hadn’t pushed through, I wouldn’t have reached my end product or successfully completed the project.

How has this research experience changed how you view science, medicine, or advocacy?

My research experience has shown me that science is more than just experimenting in my school chemistry lab. If I did not explore the world of science more, I would not have stumbled upon fMRI and discovered how it connects with ASD. As for advocacy in medicine, I have learnt how important it is to ensure that people, especially those in underserved communities, have access to the tools, support, and treatments they need.