Connect – Autism Connection of Pennsylvania

Photo of ballet dancers on a softly blue lit stage in mid dance of the Nutcracker

A Progression of Sensory-Friendly Performances in Pittsburgh, PA

Sensory-Friendly performances have become a relatively new tradition for many families in the Pittsburgh area. The venues offer a “relaxed” atmosphere that is calm and welcoming. The accessible performances emerged in 2013, and have continued to create lifelong memories for people with autism or sensory processing disorders ever since, and the Pittsburgh CLO has adopted the tradition with its sensory-friendly A Musical Christmas Carol.

Autism Connection spoke with Vanessa Braun from the Pittsburgh Cultural Trust and Lindsey Kaine from the Pittsburgh Ballet Theatre to learn the history of sensory-friendly performances in the Steel City, beginning with two groundbreaking features: The Lion King and The Nutcracker.

Autism Connection: How did the wonderful opportunity to bring sensory-friendly performances to Pittsburgh present itself?

Vanessa Braun: I first learned that the Theater Development Fund in New York City was making Broadway shows accessible to an audience on the spectrum through a piece on the national news. I went to work the next day and brought it up in a conversation with our Director and Assistant Director of Guest Services, telling them that this was happening in New York, and did they think that we could make a similar show happen in Pittsburgh. They then told me that The Lion King would be returning to Pittsburgh in 2013, and that they loved the idea and agreed with me that we were completely capable of bringing an autism-friendly or sensory friendly show to the Pittsburgh market.

“We started a trend and Pittsburgh, our region, has actually become a national leader in autism-friendly and sensory-friendly programming, which we’re pretty proud of and it’s impressive for a small city like ours.” -Vanessa Braun

Autism Connection: What did your research entail?

Vanessa Braun: Three representatives from the Cultural Trust traveled to the Kennedy Center’s (LEAD) conference and attended a session about their work conceiving of and executing their two shows with Disney, The Lion King, and Mary Poppins. We also met with the Theater Development team at the conference. They invited us to New York to see their second Lion King show in action.

After our fact-finding trip, we really got into the fine details of making this show happen. We secured the date with the tour, and it was to be the third week of a four-week run. It was vital for us to choose a Saturday to appeal to as many families as possible. We also stayed connected with our friends at the Ballet. Their first show would take place in December of 2013, and we worked together on some outreach, and of course, took the lead on training our front of house staff who would later work their show.

“Our sensory-friendly performances are a step toward making the excitement and beauty of a ballet performance barrier-free, accessible and welcoming to everyone in our Pittsburgh community.” Pittsburgh Ballet Theatre

Autism Connection: What kind of organizational commitment did each of your organizations invest in these shows?

Vanessa Braun and Lindsey Kaine: For us it was first financial, even with a group discount on the entire house, we wrote Disney a 200,000 check to buy out every seat. Why, may you ask, do we buy out the house? It is because we recognize that Broadway is an expensive endeavor. If you are coming to a typical show, you are paying $60-150 or more per ticket. Top tickets for Hamilton were going for $450 per ticket. We know that that is prohibitive for a family, and we know that parents of children on the spectrum, or who have other academic or sensory needs.

Autism Connection: Did you hold special trainings for staff and volunteers? Did you bring in outside experts?

Vanessa and Lindsey: Every volunteer and front of house staff member was specially selected to work our first show. Even with our high criteria we brought in our friend and expert, Lu Randall Executive Director of the Autism Connection to train our team. Everyone who was in the theater that day was trained by Lu. Over the past ten years she has continued to train our staff and volunteer core and she and her team have been invaluable to us.

Another group of people who we work with is the group of actors who are on stage. We like them to know a bit about our audience and differences that they may experience in timing or audience reaction. We explain that some laughs or applause breaks may differ from the typical show that they do night after night. We always get a great response from these cast meetings.

: Vanessa Braun, Director of Accessibility and Manager of Employee Engagement at the Pittsburgh Cultural Trust

: Lindsey Kaine, Manager of Accessibility & Program Development at the Pittsburgh Ballet Theatre

Autism Connection: For readers who may not have been to your performances, can you describe the differences and similarities to a typical performance that an audience member may see at one of your shows?

Vanessa and Lindsey: First, we have a team of outside professional volunteers, doctors, teachers, nurses, people who know the audience and who can help if needed. We spread them out throughout the venue. Then in the lobby we set up at least one quiet space and one activity space. In these areas, people can either stop in to blow off some steam or alternatively come to have a moment of calm.

In the theater itself, we have the lights up to about a quarter of their regular brightness, this is so that people can feel free to get up and down if they need to throughout the show. We have ushers and theater staff to hand out fidgets and share needed information. We allow personal snacks and communications devices that you would not see at a typical show.

Other than that, we want the experience to be regular with some supports, but regular. Production–what people see on the stage–is controlled by the touring show, but a few elements are softened or removed. So, the show takes out a bright flash of light or a sudden noise. The important thing is that the show stays true to itself.

Audience enjoying a sensory-friendly performance

Autism Connection: What do you have in mind for the future?

Vanessa Braun: In 2015 we started offering one sensory friendly show each year at the Children’s Theater Festival. We will continue that practice and keep an eye on the Broadway touring schedule. We look for shows out there that have broad based appeal, a show that will attract at least 2,000 community members, and a show that will be with us for three weeks or more. We love to bring Broadway to this new audience and are excited for the chance to do it again.

colorful floating bubble with reflections of a landscape trees and water inside

Circle of Life

Recently we were reminded of how small the world can be, in a good way. A lovely family decided to choose us as an honorarium beneficiary at the passing of their very successful, graceful, and beloved father. We gratefully received contributions from friends and family for several weeks. More recently, one friend of the family sent a check to the man’s son, who then mailed it to us. The family noticed an astounding coincidence – our business address is the same as the original business address of their dad who started an extremely successful, nationwide medical testing business here when the business was in its infancy.

We chose our updated name many years ago based on input from autistic people who told us to call us “what we are” – enabling people to readily find us in online searches. Our logo is circular for many reasons – we wanted to paint a picture of an embrace, an inclusive and diverse system, with various pieces moving in and out as life with autism is complex, changing, and cycles across the years. Also, did you know, the eye completes a circuit as the nerve cells “talk to each other,” filling in the blanks most easily when a picture is presented in a fluid and circular shape? This is because of visual principles called “continuation” and “closure.” Our brand and logo says a lot about who we want to be for the autism community for decades to come.

Somehow it felt perfectly right to hear from this amazing family who has followed our news, information, and events for many years, telling us how excited they were to find out the roots of their dad’s very vital and important testing business were in our new office location. The concept of “what goes around comes around,” the idea of karma, a spiritual connection – or pure coincidence – are all possibilities, depending on what you believe. We are extremely grateful, whatever the reason, and chill bumps still raise on our arms when we tell this uplifting tale, perhaps needing to spread some positivity in the face of difficulties we all face.

How do we give thanks to the spirit or the persona of someone who has passed, both for his important contributions to medicine, and for leaving a legacy that has touched us all by supporting our mission? That question is impossible to answer. So let’s just thank you for reading, and for considering the mystery of how someone you likely never met is helping meet some of your autism needs now and in the future.

~Luciana M. Randall

Familiar Voices: Autism Support Groups

One of the most comforting experiences is the sound of a familiar voice, especially one you haven’t heard in a long time.

Grandparent Autism Support Group Comes Full Circle

There are those who look for help, and in the process, help others. Nichole Givner leads the Grandmothers with Love Autism Support Group in Pittsburgh, and I met her five years ago when she was seeking help, not only for her family, but for grandparents experiencing the same struggles. We initially met in person at Eat-n-Park in the Waterfront to talk with her support group about presuming competence, and to share resources, strength and hope.

“Grandparents play a key role in our grandchildren’s lives. We carry a double weight,” Nichole says in a soothing tone. As a grandparent, she tirelessly connects with local agencies, education programs, and therapists to ensure that her granddaughter has every opportunity to reach her fullest potential. As a parent, Nichole acquires and shares skills she has developed as a primary support for her daughter. She does this in part by helping others who have the same needs.

The Grandmothers with Love Autism Support Group currently meets monthly on Zoom, and Nichole brings in presenters who offer guidance, ranging from therapists to special education teachers and Early Intervention specialists. “How can grandparents recreate what is working in the classroom in the home? How can we give our children the support they need to make sure they are getting everything they need?” she asks rhetorically. “We do this by gaining knowledge.”

Nichole’s mission is clear, and her impact in the autism community resonates that it really is about the power of shared experience. We talked about making connections, serving as a lifeline, and most importantly, we talked about our children and her grandchildren. Toward the end of the conversation, she mentioned, “I didn’t recognize your name at first, but I recognized your voice.” This, to me, was one of the most encouraging sentiments considering the effect the sound of Nichole’s voice had on me when I first picked up the phone.

golden flickering lights that seem to extend into an endless black voic

Editorial: Wings and Things

Note: I am a slow processor, especially around trauma, in large part because I have PTSD from witnessing one murder, seeing news coverage of two friends’ murders, and being assaulted with the threat of being killed — all random stranger crimes. Lots of people have PTSD for lots of reasons – it’s not just for veterans! I didn’t know that for over 30 years and I credit my friend Kris Veenis and his amazing documentary for waking me up to my own hidden disability. Denial is a powerful thing and I am glad some of mine melted away.

Trauma etches into our nervous systems and can be a lasting medical issue in those of us genetically wired to respond in a lingering fight or flight response, triggered by random linked details, or more-obviously disturbing events. I wrote the post below about the predatory murders in Buffalo and in the process of sleeping on it, other tragedies occurred in California and Texas, because our society is broken and I am in delay mode because none of us have the luxury of time, nor the benefit of actual healing things we need in order to process it all.

Yayoi Kusama, “Aftermath of Obliteration of Eternity”

This Editorial is from last week but it’s still true today:

Our mission is to be a lifeline and hub for families and adults, providing support, information, and advocacy.

Why do we care more about some issues than others? Why do I feel more impacted by the latest (but not last) mass shooting, this one targeting people of color, in a city I lived, worked, played, and learned in, versus one that happened somewhere else?

I lived in Buffalo for four years of college plus summers – it was a great, freeing, artsy place where I could ride my bike over the Peace Bridge to Canada, following Niagara River Boulevard where I would pedal all the way up past a convent where the women wore brown, birdlike head pieces, ala the Flying Nun (a 1960’s reference, you can Google it). I just learned those are called “cornettes.” It was a nice adventure.

Living a block or two from the Albright Knox Art Gallery gave me access to a great summer job and internship where I met some of my first kids with autism who tread into the mirrored cube in socks covering tentative feet, stepping into a visual infinity where some just could not enter the room. I had a lot to learn about the brain and their visual perception – and they were my first teachers.

Buffalo is where I also did an internship at St. Mary’s School for the Deaf where kids were kids and when in trouble, they’d squeeze their eyes shut tight so they couldn’t see me sign “Slow down! Stop running! Calm!” Then they would rapidly sign to each other secretly, beneath the lunch table I was monitoring, so I couldn’t see their complaints about me. Authority figures are no fun sometimes!

That’s where I took a bus from the West Side at Buff State (white neighborhoods where people looked like me) to the East side (black neighborhoods) where St. Mary’s was located, and I was the only white person on the bus after the transfer. That bus is where I got to feel, for about one hour a week, what it was like to be the only person in the “room” who looked different, literally standing out because there was only room to stand when I’d get on. I was an “other.”

I carry this experiential gift with me, one that taught the briefest lesson of empathy for people who experience being the “Only One” in the room every single day, based on how much melanin is in their skin and how white the room is. Feeling like a stranger, and then eventually acting kind of invisible (my choice and my reaction, not the choice for everyone). Not fitting in and yet knowing this was a split-second snapshot relative to those living their entire life being “othered”, realizing I could step off that bus at home and re-absorb myself in an environment where I looked like the majority any time I wanted to – the very easy way out.

Things that are painful or scary or tragic seem to matter more when they happen to us – that’s just human nature. Some people assume that if we care about a cause – say, skin cancer or autism or racial justice – we must have personal lived experience with that issue. It’s always surprising to me – although by now it should not be – to have people assume at least one of my sons (even all my sons) are autistic, based on my vocation.

They are not.

My youngest googled himself one day and found a photo of him and his brothers with me and their dad at a charity restaurant event – labeling all the boys at the time as autistic. “I wonder what else mom isn’t telling us!” he thought.

Why does Autism Connection work with, and on behalf of, ourselves and people with specific disabilities? How can we successfully move beyond our original mission to care and take action, alongside and for all who are oppressed, misunderstood, stereotyped and marginalized, beyond those who may live in our house or occupy part of our hearts as friends or family members?

How can we expect others to stand up for people in the autism community, at risk or seen as “less than”, unless we are willing to stand up for all vulnerable people, especially those terrorized by hate and violence?

Let’s share our strength and advocacy experience with anyone in need – especially if we are in the majority – and live out the words “justice for all.” Contact me to talk or write back and forth about how you may want to explore this idea, if it’s new to you. We get immersed in our own concerns because immersion is survival – but diversity brings strength to all things in nature, and we humans need all the shared help we can provide to each other.

Lu Randall

Pittsburgh Marathon 2022: Water

Autism Connection’s team joined forces with a slew of dedicated volunteers at the 2022 Pittsburgh Marathon.

It was 6:00 in the morning, and we were surrounded by water; gallons and gallons of water waiting to fill paper cups. There were heavy clouds weighted with water above us. Under Fluid Captain, Norm’s, direction, volunteers quickly assembled paper cups, filled them, then placed cardboard slats on them so we could layer the cups in stacks three layers high.

We were cold. Large droplets slowly slapped the tables. Norm handed out rain ponchos with a kind, insightful smile, “You’re gonna need this.”

Norm, Marathon Fluid Captain older man holding Autism Connection flag

Norm, Fluid Captain for 2022 Pittsburgh Marathon

We braced for runners and rain. Hand cyclists whizzed past so quickly some volunteers thought they were motorized vehicles. Then the first marathon runners glided by. It was captivating, and we seemed to lose awareness of the rain pellets.

The lead runners moved with seemingly little effort. Those that followed showed signs of struggle and determination as some reached for cups of water. Each captured cup was a triumph.

We were soaked. There was a quick streak of lightning and a thunderclap, and we braced for more. But when the clouds released, a thunderous rumble of cheering voices burst through the deluge. The harder it rained, the harder we cheered. And the runners pushed forward.

We faced challenges, white numbed hands, soaked shoes, road closures, barriers, and rain.

But that’s what the autism community does. We acknowledge and overcome obstacles. We circumvent barriers and face challenges head on. We accept the downpours and try to make the best of them, with the belief they will let up at some point.

And sometimes we cheer as we persevere.

A Reason to Run by Rachel Sivley

I love running, but there are still many days I wonder why I punish myself by running non-stop for hours at a time. When I get discouraged or lose my motivation, I remember my daughters and how I want to be an example of not only a healthy lifestyle for them, but I want them to challenge themselves. That looks different for each of them as Lydia is a neurotypical, outgoing 10-year-old who has a heart the size of a large country while Charlotte is my introverted, amazing autistic 11-year-old.

Charlotte has so many uphill battles to fight in her daily life that come with her diagnosis. She loves to make people laugh but can struggle to find the right words to make a punchline hit right. She wants to try new things but a shaky sense of equilibrium and pronounced self-doubt can make many things feel impossible. She loves playing elaborate make-believe games with her little sister, but gets frustrated and overwhelmed if the game takes a turn she doesn’t expect. I am so proud when I see her push through her fears and limits. Each time she is able to do something new, it’s like watching the underdog win the gold medal. If she can push herself to strive for more every day of her life, why am I complaining about a measly few miles that I chose to run? Her and her sister are my inspiration every time I lace up and head out the door.

I have been raising money for Autism Connection of PA while I’ve been training for the Pittsburgh Marathon this time because I want parents like me to continue to have access to a community of caregivers and autistic individuals who can offer advice and support. I keep up with the newsletters and website to hear about sensory-friendly events in town and to be informed about current research into autism. I want to feel as equipped as possible to help Charlotte navigate a world that isn’t going to cut her any slack for a disability that (in her case) isn’t obvious upon first meeting her. I’ve been lucky enough to meet my fundraising goal through generous donations from businesses, family, and friends that recognize the importance of my mission. I can’t thank them enough! I’m constantly floored by how people respond so compassionately when I’ve shared our family’s story. Their support will enable many more autistic individuals and their families to know they have a place that offers comfort, information and community right in their own city.

After the race on May 1st, I may not be working toward an immediate fundraising goal, but I will always be promoting the mission of Autism Connection of PA. It’s been a great resource for my family and with support of generous donors, it can continue to make a huge impact in this community for a very long time.

Rachel and her husband with daughters Lydia and Charlotte standing closely together and smiling into the camera at Universal Studios in Florida

Photo courtesy of Rachel Sivley