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.
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.
My daughter, 17 years old and autistic, was crying inconsolably last night. It’s one of the most difficult things for a parent to experience, especially when the reason for the upset isn’t readily apparent.
“What happened?” I asked.
Tear flooded eyes locked just past my gaze. “I’m afraid to drive.”
And I knew what she meant.
“Me too,” I said. “But I know that there’s people who can help.”
Times of despair such as we as a nation are experiencing after multiple mass shootings, evolve into a collective grief that can’t readily be put into words, if ever. We are grieving, and coping with grief can be aided by, as Mr. Rogers said, looking to the helpers.
When we think of crisis, we often think of first responders, those on the scenes during tragic situations. The helpers. But help can come in many forms. Autism Connection received a note from a volunteer from the 2022 Pittsburgh Marathon about their experience. When I asked if I could use this piece, they said, “It seems so insignificant considering the magnitude of current events.”
But it is significant.
A Message from a Quiet Helper
“I’ve always thought the Marathon was a real pain in the ass, mostly because of the inconvenience it sometimes caused me. Like being stuck in traffic and rerouted around the city because the Marathon shuts down many streets for hours.
And so, when I recently found myself standing on Carson Street with a group of volunteers from Autism Connection of Pennsylvania, handing out cups of water to runners in this year’s race, I was doing something that was…well, weird for me: supporting—voluntarily! —an event that I really didn’t like. Plus, it was pouring out. And very early in the morning. I remember thinking to myself, ‘This is going to be a very, very long day…’
Turns out it was a great day, and I experienced several moments of true gratitude. As I watched the thousands of runners pass by—some running effortlessly, many others clearly struggling—my feelings about the Marathon began to change.
There were a LOT of runners, with different body types and different abilities. Of course, there were those at the head of the pack and they seemed to fly by. But most of them were just like the rest of us—in the middle of the pack—struggling through the challenges of their day.
These were all people trying to achieve a goal that they had set. Not all of them would, but they were trying, in the rain, just like me. And maybe, with a word of encouragement and a cup of water, I could help them reach that goal.
And any inconvenience the Marathon may have caused me in the past? Please. Compared to many people, my struggles are very minimal and I take so much for granted.
So, thank you Pittsburgh Marathon. Thank you for giving me an opportunity to get outside myself. And maybe help make somebody’s journey a little easier.
With a cup of water!
Afraid to Drive
My daughter’s voice, her way of communicating her grief, came in unexpected ways. But she was able to put into words—her own words—what many of us are feeling. We may be afraid to drive, but we keep driving forward.
A Note of Thanks
Autism Connection of Pennsylvania, a lifeline and hub for the autistic community, is deeply grateful to the helpers, the first responders, and the ones who quietly move the world into a more peaceful, loving place of acceptance.
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 and threatened with being killed multiple times, soon after those events – 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.
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, 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.
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.
Our dear friend and brilliant board member, Curtis Upsher Jr., died suddenly a little over one month ago.
A person’s value and their connection to us is in part measured in how many times we reach for the phone or think of sending an email to check in with them, hear their thoughts, and listen to their latest story about their family or a project. By that measure, we hold Curtis in very high regard, he being a key figure in the lives of fellow board members and staff at the Autism Connection of PA. He was a dear friend, a mentor, and a teacher, who patiently crafted critical and valuable life lessons and advice without explicitly telling us he was doing that; he was that humble. Curtis’s strategic thinking and amazing life experience was full of great stories and examples he shared with us, helping us grow as individual people and as an organization.
We owe him a huge debt of gratitude, and we miss him very much.
Curtis Upsher Jr. with fellow Board Member, Steve Crane