Autism Relationships – 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.

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.

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.

Control group brain scan compared to autism brain scan

National Institutes of Health Funding: University of Pittsburgh’s Center for Excellence in Autism Research

We have taught about the medical diagnosis of autism for almost 25 years. Before the National Institutes of Health (NIH) funded brain research, teaching felt like simply trying to convince people, without evidence, that behavior and communication were different because an autistic person’s brain and body made them that way. People still walked away skeptical. Teachers still blamed parenting. Folks said it was vaccines. Giving talks felt weak and at times pointless when too many people had closed minds.

Pictures Speak 1,000 Words

The number of skeptics leaving our classes dramatically reduced once NIH-funded brain imaging and other studies showed the medical facts. Autistic brains are wired differently. Some parts – like the piece that controls facial muscles being really small in many – are very different than average. Teaching with images finally showed how and why autistic people needed to do the various things others found hard to understand. Science helped us stop much of the punishment, torment, and abuse heaped on children and adults who moved, talked, and behaved in ways others found confusing or unacceptable.

fMRI of control brain and autistic brain side by side

A typical involvement of frontostriatal systems during sensorimotor control in autism

The NIH helps parents, other caregivers, and supporters learn to adapt their ways to better nurture and accept the people they love, care for, and support. It helps employers tap talents while giving reasonable accommodations to let people flourish while building corporate revenues. And research helps law enforcement make better decisions on a 911 call response, and judges to better understand when someone makes a disability-based error or simply is doing “autistic things” lacking criminal intent, which triggered a stranger’s 911 call.

We cannot stand by and watch the erasure of science that’s been truly lifesaving. Dumbing down society by cancelling scientific fact finding is unacceptable. We cannot count the emails and phone calls traded with our very good research friends at the University of Pittsburgh’s Center for Excellence in Autism Research, or with other generous NIH scientists nationwide who help us translate things like highly technical functional MRI science to the literally thousands of people we have reached. It has mattered a great deal. Words cannot express how much.

The Importance of Autism Research

The Autism Connection of Pennsylvania does not rely one bit on NIH funding to exist. However, our population’s survival relies on the gifts NIH science has provided in terms of our own understanding, and our ability to show others the right way to treat people. This has been critical in preventing or resolving the most dangerous situations: when people explore without fear (“wanderers,”) or are victims of neglect and abuse, or are accused of crimes and fall into the criminal legal system and prison. Homeless people, those without adequate food, people left alone in the world after their parents die, children bullied, adults fired due to basic misunderstandings, people with epilepsy or other common coexisting disorders, children and adults needed psychiatric care and medications – the things we commonly deal with every single day to the tune of about 260 help requests a month – all have been helped by our understanding how people internally process information, or how they cannot and need external help.

Please do anything you can to save NIH funding. Destroying decades of successful work by extremely smart and incredibly kind research friends is criminal and a huge talent loss, not to mention a tremendous waste of dollars invested for all the right reasons, with critically valuable outcomes to date. The future is in our hands – and we must fight to preserve it for the autism community.

2025 Pittsburgh Marathon Run for a Reason

Autism Connection of Pennsylvania is a charitable partner for the 2025 Dick’s Sporting Goods Pittsburgh Marathon, Run for a Reason!

There are 10 different events during Marathon weekend, and we hope you’ll choose Autism Connection of Pennsylvania as your charity!

How it Works in 5 Steps:

Step 1: Choose Your Event
Select one of 10 events, including the marathon, half marathon, marathon relay, 4-mile fitness challenge, 5K, champions mile, kids marathon, toddler trot, or pet walk.

Step 2: Fuel Your Participation with Purpose
As you register for your event, opt to join the Run for a Reason Charity Program and choose Autism Connection of Pennsylvania in the drop-down. This marks the start of your journey as a champion for change. With every step, you’ll be raising funds to support adults and families affected by autism.

Step 3: Rally Support
Share your commitment with friends, family, and colleagues. Harness the power of your network to amplify your impact. Autism Connection of Pennsylvania can provide stories of impact to inspire those around you to support your participation in this life-changing cause.

Step 4: Raise Funds, Ignite Impact
Every dollar you raise is a testament to your dedication and a catalyst for change. Empower your movement with the knowledge that your participation directly supports autism resources, education, support, and advocacy.

Step 5: Rewarding Your Dedication
If you hit your fundraising minimum (determined by event), your registration fee will be refunded—a tangible token that your commitment truly matters.

Fundraising Minimums:

Marathon: $500
Half Marathon: $400
Back Half Marathon: $1,000
Relay Team: $1,000
4-mile Fitness Challenge: $200
5K: $150
Champions Mile: $50
Kids Marathon: $50
Toddler Trot: $50
Pet Walk: $50

The Run for a Reason Charity Program is more than just finishing an event—it’s about moving with purpose, becoming an agent of change, and making a lasting, positive effect in the autism community.

Join us and run for autism awareness, support, and inclusion!

Not a Runner? Not a Problem!

There are many ways to support Autism Connection of Pennsylvania in the 2025 Dick’s Sporting Goods Pittsburgh Marathon Run for a Reason even if you’re not running. Here are some great ways to get involved:

1. Fundraising and Donations

Sponsor a Runner: Contribute to a participant’s fundraising goal.
Share a story: Do you know a runner with a great story? Email tammi@autismofpa.org to share.

2. Volunteer to Cheer at the US Steel Champions Mile

Join Autism Connection of PA’s Cheer Station: Encourage runners along the course while representing Autism Connection of PA.
Share on Social Media: Post about Autism Connection’s involvement and encourage others to donate.

4. Corporate and Community Partnerships

Corporate Matching Gifts: Encourage your employer to match donations.
Sponsorships: Connect Autism Connection of PA with potential business sponsors.
Team Participation: Organize a group from your workplace or community to fundraise together.

Even if you’re not running, your support can make a big difference in helping Autism Connection of Pennsylvania continue our vital work. Every effort counts!

colorful whirls spiraling into a white center

Explaining Feelings and Pain Levels to Medical Staff

Willow Marie Iti is an autistic person, who like many, has always found it challenging to explain her body’s feelings and pain levels to doctors. “It often felt distant and subjective. So, I decided to create my own scale to help others understand and be more objective. Here is a free resource from my upcoming book. I hope this helps someone!”

The scale takes a unique approach that includes emotional elements that play a role when a person is feeling pain or discomfort while trying to put the experience into words. Many autistic people have difficulty with interoception – the sense and perception of internal bodily sensations – so recognizing and communicating internal sensations, hunger, emotions, and pain can be very challenging. Willow’s scale gives insight into the process of identifying and communicating what a person is feeling internally, both physically and emotionally.