Child Health Association of Sewickley Grant: Spelling

We are glad to share that Autism Connection of Pennsylvania has been granted the opportunity to further our mission of being a lifeline and hub for families and adults in the autism community. With heartfelt gratitude, we announce that we have been awarded a grant of $10,000 by the Child Health Association of Sewickley.

We believe in leaving no member of our community behind. Our organization is disability-led, with a passionate team that includes three autistic board members, and 33% of our staff is autistic. We serve people and families from infancy through older adulthood, with a goal that
everyone receives the support, information, and advocacy they deserve. 

This grant is a testament to our commitment to inclusivity and accessibility. With these funds, we will embark on a project aimed at supporting people who are nonspeaking or minimally verbal, hoping to help them communicate their needs and wants—often for the first time.

Child Health Association of Sewickley Logo

Here’s a glimpse of what this project entails.

Project Goals

  • Link families who have had success with spelling to access academic, social, and healthcare needs
  • Engage families in dialogue with newcomers for whom traditional speech and language services are not sufficient
  • Emphasize the concept of presuming understanding on the part of nonspeaking autistic young people and promote literacy from a young age
  • Educate caregivers about autism brain differences that affect spoken communication
  • Encourage families to explore new communication methods with support from experienced practitioners

Measurement of Success:

  • Number of new families introduced to spelling for accessing various needs
  • Number of families using spelling with some success
  • Engagement of professionals in training sessions
  • Distribution of spelling boards at no cost
  • Involvement of families, teachers, and therapists in implementing spelling

This project aligns with our core values of inclusivity, accessibility, and support. We are dedicated to making a tangible difference in the lives of nonspeaking autistic people and their families, ensuring that communication barriers do not hinder their access to healthcare, education, and social engagement. Together, we can break down barriers and create a more inclusive world for people with autism who need access to communication.

Thank you for being a part of our journey. 


Pittsburgh Marathon Runner Profile: Dr. Scott Faber

Running for a Reason, Dr. Faber embarks on the Pittsburgh Marathon to raise awareness and support for Autism Connection of Pennsylvania, drawing inspiration from his personal health journey and professional dedication to autistic children and their families. Meet Dr. Scott Faber, a Developmental-Behavioral and Neurodevelopmental Pediatrician whose passion for promoting health extends beyond the confines of his practice, Developmental Integrative Pediatrics.

What prompted you to Run for a Reason? 

Walking and running this distance challenges me to pursue health goals, and serves as a talking point for the families in my practice.  I chose Autism Connections of Pennsylvania because of the decades of excellent work done by this organization to support children and families with autism, educate professionals, and advocate for change.
Dr Faber sitting in front of large window overlooking Pittsburgh Point

Dr Scott Faber

When and why did you start distance walking/running? 

During some winters I develop inflammation and joint swelling.  I started walking distances, with some running, to slowly increase my stamina and strengthen my legs.

What hopeful signs you are seeing in autistic children?

I am seeing children, adolescents and adults with autism thrive through provision of excellent educational, therapeutic, and job training programs.  I have seen numerous children improve their health by careful management of biomedical issues, such as seizure disorders, gastrointestinal inflammation, immune dysregulation and micronutrient deficiencies.

Dr. Faber has a long history of helping the autism community throughout his career. His Pittsburgh Marathon journey in 2024 may involve a combination of walking and the occasional jog, and we deeply appreciate every step.

You can support Dr. Scott Faber by visiting his Marathon Race Roster page.



Autism Community: Fewer Words, More Action

Psychologist and author, Dr. Ross Greene, states, “Children do well when they can.” This notion recognizes that when children have their needs met, their behaviors eventually fall into place. This applies to all of us. We do well when we can.

We expect, somehow, for families in crisis to embrace their situations with unconditional positive regard. People are not getting what they need. They are in crisis. We must work together so we can all move forward. A parent took time to answer questions for Autism Connection — which was not an easy task considering the the events of any day can be unpredictable, unmanageable and of colossal magnitude — things that often go without consideration.


What is the single most important service lacking for your child at this stage?

Since my son just turned 18, I would have to say any and all adult services are lacking. There is not an appropriate day program for him currently available once he graduates. Social security is one denial after another, even though it is the only means for him to have any of his own money. I am fortunate that I have a pretty solid knowledge base of what to expect, what is available and not available, so I can’t imagine what all of this is like to someone going in who is completely new to this. 

It’s important to note that services are lacking for all ages. Most daycares are not equipped for children with behavioral and extra needs. Preschools have waiting lists. Find someone to look after my son for a date night? Forget it. Most social skill programs are full, or not a good fit for the most affected.

Do people underestimate safety concerns?

Unfortunately, yes. The obvious concern is water safety. Every time I see a news story about a child drowning, I wait to hear that the child had autism. I’ve also seen countless parents ask about any assistance to build a fence. Our kids like to wander, and sometimes have no ability to gauge personal safety. Fences are expensive and having any sort of funding to alleviate the cost would help so many. It is incomprehensible to me that charities deny funding for this most basic safety tool, despite parents with lived experience asking for it over and over.

Because autism is often an “invisible disability”, I still have to hold my son’s hand when we’re out in public and he is 5’8″. He has frequently taken food and drinks from strangers, and other than wearing noise-canceling headphones; nothing outwardly indicates that he has a disability. Fortunately, we have mostly been met with kindness when this happens, but a few times we haven’t. I worry about our safety, as a family, if we encounter someone who doesn’t understand.

What factors keep you from going into the community? 

The world in general is not sensory friendly. I plan ahead, sometimes doing a dry run, for anything that is new. My husband and I will often drive separately, so if someone has to leave with our son, one can leave while the other stays. It’s actually gotten harder to go out the older he gets. His disabilities are harder to hide, and the only reason we would want to do that is because people are cruel and judgmental. We mostly stick with a handful of “safe” places, and rarely deviate from them.

Can you make a wish list of supports and services that would help your family?

  • Qualified caretakers and adult care, for sure. I can’t stress enough how disconnected I feel from my husband and friends because I don’t have an experienced person to watch my son. I just want one night every month or two to try to be out, stress free, with adults. I just don’t have that. 
  • Day programs for the most profoundly impacted autistic people. One that really considers all needs, from social connections, meals, cool activities, and general safety and specialized medical support for seizures and other incidents, are critical. My son has had pica for most of his life, so things like houseplants, art, and cleaning supplies pose a risk to him regardless of his adult age. That’s one reason that competitive employment or random community settings are hazardous to him without lots of support around.
  • Funding for business startups: Totally wish list idea, but grants and/or special loans for parents or caregivers who have business ideas for their loved ones with disabilities. I have dreams of opening up a business where my son and others like him could do meaningful work, but start up costs are prohibitive.
  • Flexible employment for parents and caretakers: I also wish more employers would understand that parents do want to work. We talk about how those with disabilities are under or unemployed. That goes for their parents too. I would love nothing more than to work a full time job and contribute financially to my household, but because of my son’s ever increasing needs, I can either only work part time, or wish for the unicorn well-paying, work from home job, that would understand if I need to take a break if my son is in the hospital.

children and adults who need care around the clock lack programs and staff support bill to increase direct care provider wages

What’s the hospitalization about?

Our son has epilepsy which frequently co-occurs with autism. This is complicated as he cannot tell us if he feels a seizure coming on (an aura) and cannot tell us how medications are affecting him at all. Also since he is nonspeaking, we need to have eyes on him at all times since we cannot just yell “Hey, Jackson (not his real name) are you okay?”  to check on him, and have him answer. He has been hospitalized several times following 911 calls and ambulance rides, which he also cannot communicate during to participate in assessments. Just last month, he was on a ventilator due to a seizure. Many families like ours live with this kind of daily stress, and unexpected terror during episodes. There is not enough research or help to support any of our kids or our families.

Is there access to doctors, dentists, and other health professionals who specialize in autism?

There are not a lot of medical professionals experienced with or specializing in care for autistic adults. There are some that you find by word of mouth, if you’re lucky. At this point, I’d say I’ve had the best luck just strong-arming my way into offices we already go to. My tip is to go through the front desk staff. They always know. By asking a lot of questions and being super friendly, I’ve gotten appointments with an oral surgeon for my son’s wisdom teeth, and at my dentist for regular cleanings. I’ve been able to extend his time at his pediatrician’s office as an accommodation. But I also started to talk with my own doctor to see if they would be willing to take on my son as a patient as a backup for when he ages out. There are no “autism ready” doctors that I know of, so I’m making my own network.

How do you feel about disability services neglecting your son’s needs, such as refusing to create meaningful day programs outside of competitive employment?

It makes me really angry. The super cynical side of me wonders if my son doesn’t matter to society as a whole because he isn’t “contributing”, in the classic sense, that the people in charge find most important – maybe because that is what makes them feel most important – their jobs. Giving people like my son – and there are thousands in PA we do not see because they are isolated at home – what he needs is expensive and takes creativity and caring, and no one is willing to have programs like that.
We have senior centers and adult day programs for elderly people who also have care needs – so this feels very discriminatory. People call day programs “segregated” but nobody will be more segregated than my son when he is stuck at home once school ends.

How does your son feel when he’s out of school for prolonged periods? What, if any, behavioral changes happen during those times?

He definitely gets frustrated, bored, and will sometimes act out. I’m only one person, and I can’t give him the kind of attention, structure, and activities that school can. We have another child who also needs to be cared for and entertained, and my husband works extra time, since I can’t contribute financially to the best of my abilities. So I’m trying to be a one-woman show. I think we all get burned out from that.

How do you practice self-care?

The short answer is I don’t. I can’t pick up and leave for a relaxing weekend or girls’ night out. There are places that offer respite for parents, but don’t provide childcare, so how are we supposed to take advantage of that? On school days, I do get a little bit of time to myself, so when I’m not cleaning, doing housework, or working (I work from home part time), I work out in our garage gym. My husband built it during the pandemic, and it is my one sanctuary.

How many other families would you guess you are in contact with who share your thoughts and feelings about this?

I’ve been on several day program tours with other families from school, and we’re all in the same boat. We all feel that none are appropriate for what our kids need. There are a lot of parents of kids transitioning to adulthood that just feel lost.

I am also a member of online parent groups and have been over the past 16 years. There is a tremendous amount of unmet needs there, just like we have at my house. Who is going to listen to people who can’t influence politics (no money or power), who can’t donate to a big charity and have strings pulled, and who have shrinking social networks due to staying home to keep people safe? We are a large but powerless population. 

It’s exhausting when someone who doesn’t know you, your family, or your situation says that every decision you make is wrong. Whether it’s about what therapies you choose to use, school to attend, wording to describe your loved one’s diagnosis, we can’t seem to make the right decision. At the end of the day, my husband and I are trying to raise our son to be as healthy as possible, while keeping him safe. It’s increasingly difficult to do that when those who don’t know our situation, or want to acknowledge how severe of a disability autism can be, are making decisions for us.  

I’d like to encourage caregivers, family friends, anyone who loves a family with profound autism, to contact their local government representatives. If you can, take your person with autism with you. They need to see what we are dealing with. They need to know that the solution is not one size fits all. We are struggling. We need more support. We need more funding. We need others to stand with us and help us.


The autism community — the entire autism community — is in crisis. This is not about levels, it’s about human beings who need help. We are beyond awareness and acceptance. We are beyond words. It’s time for action.

You can help by contacting your Pennsylvania legislator to support the Proposed PA Budget Increase for Intellectual Disability and Autism (ID/A) Services System. Compose your message here.

We recognize that much more needs to be done, that there are gaping holes in services and programs in all ages and stages in the autism community and that people are in great need. This is one step people can take in Pennsylvania.


Pittsburgh Marathon Runner Profile: Nina Barbero

Welcome to our first Pittsburgh Marathon runner profile featuring Nina Barbero, or “Miss B” as her health and physical education students know her. Nina agreed to an interview all the way from snowy Rochester, NY where she trains regularly and is a member of Rochester Area Triathletes (RATS), her hometown’s triathlon club.  

Get to know Nina through her interview here:

Hey, thank you for deciding to run for Autism Connection of PA!  Tell us about your experience supporting people with disabilities in your community.  

I have been supporting people with disabilities for as long as I can remember now. In high school I helped my mom with a family friend Meg, who suffered a traumatic brain injury and is dependent on others for care which we provided on a regular schedule. Once my mom got me into racing I was able to run a 5k with Meg where we pushed her in a stroller. 

Once entering the multi-sport community, I met the Peck family and Onni. Onni has a progressive muscular disease but her family doesn’t let that hold her back. She races triathlons with her dad who swims with her in a boat then attaches a stroller to his bike to ride with her in tow and then pushes her on the run in the stroller. I am always there cheering her on at all the races where we are both competing. 

Most recently, I was able to get one of my former elementary students who uses a wheelchair, to participate in a splash and dash event by my triathlon club. I knew she could do it and she did! In my current position I support our adapted PE classes where we recently started our own event “Northwood Olympics” for our students in APE classes to compete in track and field events. 

Nina dressed as a dinosaur standing with fellow runners wearing costumes

Tell us about your own fitness journey. What drives you? What have other people done to support you that has been most beneficial?  And what do you do to motivate others in the tri or run community?

My own personal journey is all about having fun and enjoying the races I compete in. I also love the community and friends that I have gained through my experiences in running and triathlons. My biggest support is my mom. We frequently train,  travel and compete in almost every race we do together. I could not do these events without her! I hope I’m still moving like her when I am her age. The next biggest support is my tri club. RATS has been a driving force in keeping me involved in the sport, every workout we do and event we host shows what an amazing community of people we have. No matter the pace or experience a person has, everyone is welcome and that is something I love about being around the club members! 

As for how I motivate others in the community, I just continue to work and push myself to compete in events. When I am racing I’m cheering people on as they pass me or I pass them. If I’m not racing I am volunteering at events or just showing up with my camera to get action shots of those I know and sharing the photos on our Facebook group. 

What was your first full marathon experience, which was here in Pittsburgh, like for you?  I heard you cried throughout the race, but not for the reasons people might expect. Can you tell us about that?

It was an incredible experience! It’s a hilly course that is similar to my hometown so I was ready for that! I did find myself in tears for the last few miles of the race. It was a big deal for me to be able to complete the race. I wasn’t even sure I would be able to as I was going. Every time someone would cheer me on or give me a compliment I would just burst out into tears, not because my feet hurt (they did), but because of how overwhelmed I was by the support and kindness of others! 

Nina poses in front of a screen after receiving a medal

I know you are related to someone at the Autism Connection of PA – did anyone in your family twist your arm to run on May 4, 2024?  What else are you excited for about that day – what are your after-race plans?

No one ever has to twist my arm to sign up for an event like this! I was telling my aunt and cousin that I was planning to come to Pittsburgh May 4th for the Pirates game. I am a big fan of the Pirates (Let’s go Buccs!) and a big Star Wars fan too! So when I saw it was Star Wars night I had to plan a trip for the give away! When I mentioned this my cousin told me it was marathon weekend so I figured why not sign up! So I will be doing the 5k Saturday and the half marathon Sunday! Calling it a training weekend for my second half Ironman I will be doing in July. After the race I’ll hop back in the car and head home so I can be ready to teach my littles bright and early Monday morning!


Nina Barbero, or “Miss B,” has shared an inspiring journey of dedication and support for people with disabilities, emphasizing the power of inclusivity in the running and triathlon community. As she gears up for the Pittsburgh Marathon on May 4, 2024, running for Autism Connection of PA, we invite you to join her cause.

You can support Nina by clicking her Marathon Race Roster page

Or, if you feel the call to action, why not lace up your running shoes and participate in the Pittsburgh marathon for a cause close to your heart? Nina’s story exemplifies the transformative effect of running for a purpose, and your involvement can make a difference.

Whether through donations or by taking on the challenge of a marathon, let’s rally together and make strides towards a more inclusive and supportive community. Thank you for considering and being part of this incredible journey.


Giving Tuesday 2023

The Meaning Behind Giving Tuesday

Giving Tuesday, (#GivingTuesday) began in 2012 in response to the commercialization of the holiday season. It is a powerful reminder that the true essence of the season is about giving. This global day of generosity encourages people to contribute to charitable organizations, volunteer their time, and lend a helping hand to others.

Autism Connection of Pennsylvania: A Lifeline and Hub for Families and Adults

Autism affects millions of families worldwide. Autism Connection of PA is a non-profit dedicated to supporting autistic people and their families in Pennsylvania. Founded in 1996, Autism Connection has been at the forefront of the autism community, offering support, information, and advocacy.

The Impact of Giving Tuesday: Autism Connection of PA’s Key Initiatives

Resources and Support We welcome help requests in text, email, phone, and in-person.  We give information to families and adults with whom we navigate autism needs, care, and support for living, learning, working, and enjoying life. Workshops and Training School assemblies about disabilities and anti-bullying, first responder training, justice system courses and general support tips are topics we cover, aiming for the best life experience for all! Collaboration We love to do sensory-friendly, accessible event consulting for theaters, museums, libraries, parks, schools, airports, courthouses, and more! Support Groups Adults, families, caregivers enjoy safe and understanding talks where they share experiences, challenges, and successes.  Emotional support and feelings of belonging are our goals in virtual and live meetings. Advocacy Working to influence local and state systems, often on life or death issues, keeps us busy.   Justice, healthcare, education and other areas of critical reform needs are areas of focus.

Get Involved 

As Giving Tuesday approaches, Autism Connection of Pennsylvania relies on the generosity of individuals, businesses, and communities to continue our vital work. Donations on this special day can make a significant difference in the lives of those affected by autism. Involvement doesn’t always translate into monetary donations. Sharing your experience, connecting with others, offering help, or simply spreading the word about our work can have a huge impact. 

ways you can help on giving Tuesday. Donate. Volunteer. Spread the word.

You Can Make a Difference

On Giving Tuesday, let’s rally support Autism Connection of Pennsylvania and the community we serve. By donating, volunteering, and spreading the word, we can contribute to a brighter and more inclusive future. Together, we can make a difference and embody the true spirit of the holiday season – the spirit of giving.

 


We Got Your Back, Jack! 2023 Pittsburgh Marathon Runner Runs for a Reason

I was diagnosed with ADHD at 43.  I always knew that I was different from my peers. Looking back, that difference created barriers and annoyed people at times.  My non-stop chatter and impulsivity would lead to fights, self medication, and forced isolation during adolescence and early adulthood. I reflect now and I realize that physical activity helped regulate me; you may say it saved me. The structure and expectation of sports was key in my day-to-day success and when it was missing, the consequences were unpredictable.  

Having a daughter with the same observable traits led me to encouraging physical activity and we experienced the positive outcomes of those daily challenges. That is how we live our lives together.  As a family we participate in 5ks, competitive dance, competitive powerlifting, soccer, and terrain races. And now at age 50, I myself am training for my first Marathon! 

This journey has already led to some meaningful moments in my life. I am thrilled that I can fundraise for a vital cause, and neurodiversity is now an open part of my personal life as much as it has been part of my professional life. 

Jack smiling broadly wearing a blazer and sitting in a conference room at Achieva

Jack Butler exudes passion for his work.

I have chosen to raise funds for the Autism Connection of PA, part of Achieva family of organizations where I have worked for 28 years.  Autism Connection relies on fundraising to fulfill its mission to promote awareness and advocacy for and with autistic people. People who like me, may identify with being on the fringe of societal norms. Autism Connection is not focused on fixing people, but welcoming people to the table, supporting their goals, and valuing all perspectives.  

Jack proudly holds up a tshirt that says Inclusion Matter

Inclusion Matters!

By sponsoring me to run the Pittsburgh Marathon, you will help Autism Connection continue their good work and help all people lead lives of personal significance. What started as a therapeutic way for me to self-regulate has now turned into a way I can  help meet some of the support needs of others. Please join me in this effort – I could use  your encouragement every step of the way! 


We got your back, Jack! Visit Jack Butler’s 2023 DICK’S Sporting Goods Pittsburgh Marathon page.


A Magical Connection Fundraiser for Autism Connection of PA

On Saturday, April 29, 2023, our friends at A Magical Fundraiser are hosting 13th Hour Entertainment and Autism Connection of PA for a casual night out at the Tonidale Pub in Robinson Township. Magical Connection is a fun, high-sensory event that benefits the region’s autism community

This event features:

  • Dinner
  • Mindwarp Show featuring Mentalist/Magician Steve Haberman with the vocal talents of Tracy Lynn  
  • Disc Jockey and Dancing by Nite Life DJz
  • Basket Raffle and 50/50 drawing

 Autism Connection of Pennsylvania spoke with the talented Tracy Lynn and the amazing Steve Haberman.

Autism Connection (AC): You’re involved in many different endeavors. Can you share about 13 Hour Entertainment, A Magical Fundraiser, the Mindwarp show, and your partnership? 

Tracy and Steve (TS): 13th Hour Entertainment Inc. is a company specializing in family and corporate entertainment. We have combined with Magic Wand Princess Parties, Nite Life DJz and other entertainers to provide A Magical Fundraiser to help organizations that have fundraising needs. We provide the entertainment for these functions along with advice on how to make fundraising events successful. From years of working at these events, we have learned a lot about how the organization can maximize their efforts and money generated. Over the years we have worked with schools, fraternal organizations, companies, and other charitable organizations. Our Mind Warp Show is one of the most popular entertainment options for this type of event. It combines magic, comedy, and music into one show that appeals to all audiences.

AC: How did you become involved with A Magical Connection Fundraiser for Autism Connection?

TS: We have a lot of friends and family who have children or relatives that are on the spectrum.  We have been wanting to do a fundraiser for a few years now to benefit autism awareness, because we think it is important for families to know the support that is there for them and truly feel accepted. With the pandemic, our plans were put on hold. We have a very close friend who has autism that guided us to the Autism Connection of PA, and we couldn’t be happier to be working with this foundation.

Phot of Tracy Lynn and Steve Haberman dressed for a show and waving at the camera

Tracy Lynn and Steve Haberman

AC: Do you have any outstanding experiences with people on the autism spectrum as a performer/artist?

TS: Many entertainers that work with 13th Hour Entertainment have performed for people on the autism spectrum. Magician Steve Haberman in particular, performs at numerous schools throughout Pennsylvania, Ohio and West Virginia for school assemblies and there are normally kids at these events who have a range of disabilities, autism, and hidden differences. He has performed for children with special needs in smaller groups and birthday parties as well. Steve also provided magical entertainment for a convention at Pittsburgh’s David Lawrence Convention Center for an autism conference. During this conference, Steve performed multiple magic shows throughout the day for the kids while parents attended various meetings and lectures. It is our great pleasure to work with the Autism Connection of PA on a fundraiser for this very important cause.

Ticket and Sponsorship Information Here

If you have questions about this event, feel free to call Tracy Lynn at 13th Hour Entertainment, (412) 926-3472 or email her at [email protected].


Support for Autism Connection of PA directly impacts people of all ages facing many challenges related to autism. Contributions raised will fund: help for families seeking resources, development of inclusive, sensory friendly areas across Pennsylvania, first responder training, virtual and in-person workshops, school homeroom and assembly talks about hidden differences, educator and administrative training, justice system reform, and so much more. 

Visit Wednesday Wake Up Call for weekly updates of our current work.

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