Interoception refers to the sense and perception of internal bodily sensations, an inner compass that helps us recognize internal sensory experiences. It is the ability to detect and interpret signals from within our own bodies, allowing us to be aware of various physiological processes such as heart rate, breathing, temperature, hunger, thirst, bathroom urges, and the feeling of pain or discomfort. Interpreting these signals allows us to gain awareness of physical and emotional states, aiding in self-regulation and decision-making.
Through interoception, we gain insight into our bodily states and needs, which helps regulate our overall well-being. It plays a crucial role in maintaining homeostasis, or the body’s internal balance. For example, interoceptive signals can inform us when we are hungry or full, prompting us to eat or stop eating accordingly. Similarly, interoception can alert us to feelings of fatigue or stress, signaling the need for rest or relaxation.
It is our “gut feeling” that is often linked to the idea of intuition, and it our body’s way of internally activating emotions. Interoception can be underactive, resulting in a lack of awareness of how we should feel, or hyperactive, spiraling alarming emotions. Sometimes, people can swing like a pendulum between the two extremes.
Janice Nathan, MS, CCC-SLP, talks about interoception.
Interoception also has implications beyond basic physiological awareness. It is closely linked to emotional experiences and the regulation of emotions. By perceiving changes in our internal state, we can recognize and respond to our emotional reactions, allowing for self-reflection and coping strategies.
While interoception is a natural and instinctive process, it can vary in intensity and accuracy. Some people may possess a heightened interoceptive sensitivity, enabling them to pick up subtle bodily cues and respond more effectively to their needs. Others may experience challenges in interoceptive awareness, which can contribute to difficulties in recognizing and managing physical and emotional states.
Understanding interoception has gained increasing attention in various fields, including psychology, neuroscience, and medicine. Researchers are exploring its role in mental health conditions such as autism, anxiety, depression, and eating disorders, as well as its potential for therapeutic interventions aimed at improving emotional regulation and overall well-being. When we are able to listen to our internal signals, we are better able to employ strategies to attain balance between mind and body.
A sensory-friendly room can be a crucial step toward providing comfort and relaxation for people with sensory sensitivities. However, the idea of taking on this task may seem overwhelming because of the high costs associated with it. Recently, Autism Connection of Pennsylvania visited our friends at Three Rivers Community Care, where CEO, Allison Broaddrick, demonstrated that many of the elements found in our region’s large, sensory-friendly spaces can be replicated on a smaller, more affordable scale. Examining larger projects in the Pittsburgh area is a source of inspiration.
Examples of Sensory-Friendly Areas
Autism Connection of Pennsylvania has seen innovative examples of areas that help people with sensory sensitivities since the Pittsburgh Cultural Trust broughtsensory-friendly performancesto our region back in 2013. One of the most outstanding endeavors is the sensory-friendly area at the Pittsburgh International Airport,Presley’s Place. This project motivated The Honorable Jennifer McCrady to initiate sensory friendly areas in theFamily Division of the Allegheny County Courthouse.
Sensory-Friendly Area Presley’s Place at the Pittsburgh International Airport
Photo of sensory room in the Family Division of the Allegheny County Courthouse
Audience enjoying a sensory-friendly performance
Affordable Sensory-Friendly Rooms
First, a quick congratulations to Allison Broaddrick, for making the list of30 Under 30in the Pittsburgh Business Times. Her ingenuity and knack for problem-solving are among her greatest assets, and her use of inexpensive materials in creating a calming area atThree Rivers Community Careis a great model. The process began with addressing the specific needs that her friends, clients and associates expressed. From there, the team began putting ideas into motion.
Sound and light unit found online for less than $20
String lights with color change option, floor mattress and pillows
Comfortable chair, weighted blanket, fidget toys in drawers
Cover for florescent lights
Quick Tips for Inexpensive Sensory-Friendly Spaces
Choose the right color scheme: Soft pastels or muted shades of blue, green or lavender can help to create a calming atmosphere.
Manage lighting: Lighting can play a significant role in sensory experiences. Use soft lighting to create a relaxing environment. Avoid bright or fluorescent and flashing lights. Consider using dimmer switches or lampshades to help control the level of light.
Provide comfortable seating: Choose a comfortable chair or couch with soft, supportive cushions.
Incorporate soft textures: Use soft blankets, pillows, and plush toys to create a sensory-friendly atmosphere that is still texturally interesting.
Use soundproofing materials: Soundproofing materials can help to reduce outside noise, creating a quiet environment. Use foam panels or curtains to absorb sound.
Implement what works for for the person as an individual: Taking the lead from those who will benefit from the space is a critical first step. Look for elements that resonate with personally; it can be a favorite toy, activity, or sound.
Begin With The End In Mind
We can’t stress enough how very important it is to begin by listening to people who experience overwhelming sensory processing experiences. In each successful endeavor, people with lived expertise took active roles in the planning and development, and each project adjusts to feedback from different perspectives. The partnership between the Pittsburgh International Airport and Hayes Design Group Architects is a prime example because this collaboration began by bringing people who have sensory processing differences, autism, post-traumatic stress, and anxiety to the planning and development table at its inception.
Autism Connection of Pennsylvania continues to collaborate with the community in creating environments that are inclusive and accessible. Current projects include Accessibility in the Arts and theFrick Environmental Center Sensory Classroom. Time and time again, we find that many ideas are remarkably simple and can be inexpensive to replicate if we listen carefully and respond by bringing ideas to life.
We learn a lot from individual histories and situations thanks to people trusting us with their personal stories and advocacy needs. Over the years, some situations have revealed that an additional medical or psychological diagnosis, or both (often a psych diagnosis is rooted in medical issues) may be the real culprits causing someone’s suffering. Autism is not the only difference a person can have, and we need to look closely at ourselves, and the people we care about. We also need to help others see folks for the complex and interesting beings that they truly are.
Imagine someone diagnosed with Type I, or juvenile diabetes, at age 12, and for the rest of their life all issues were attributed to that. Headaches? It’s the diabetes. Vision issues? It’s the diabetes. Fatigue and nausea? – you get the picture. And what if those symptoms were coming from treatable migraines but never prevented or resolved by regular migraine treatment? A person might – and many do – suffer for decades if they are only seen as having one issue as the cause of everything wrong, while something else is going on. They have more than “one thing” and need to be treated as such.
We support three unrelated people who each have experienced: job loss, eviction, academic punishment and expulsion, legal issues, getting lost during travel, and social problems. All three have an autism diagnosis, and all three had been in car accidents from four years to decades ago! Once we started to say, “This does not seem like your autism,” and started referring them to traumatic brain injury (TBI) evaluations and treatment programs, many of their emotional burdens fell away.
They felt the same feelings of being different and not being able to move forward that many undiagnosed autistic adults feel. The additional, correct diagnosis of traumatic brain injury has resulted in feelings of relief, being finally understood, and belonging to a new support community. Are they still autistic? Yes! Can they be helped by a couple of different specialists? Also, yes. Combined therapies are doing great things!
We are all many “things” at once. Lazy, hungry, and curious, a chef, Netflix watcher, and a bookworm, a housecleaner, gamer, and a guardian, even a cat AND a dog lover! We can also be autistic and hypoglycemic, nearsighted and have tinnitus, or have anxiety and joint issues. Each of us exists in combinations of gifts, needs, strengths, interests, and biological differences. So please consider another look at yourself or someone you care about.
If things are not getting better, or they are worsening, or something has been bothering you for a long time and you keep putting off a checkup — trust your instincts! Get and go to a doctor’s appointment. Contact us to talk things over — we know cross-disability professional friends, and can sometimes help with specialist medical referrals. Hopefully we can get you to a new “right place” to meet your needs. Let’s take a clear look at ourselves in this new year, together and with the tailored support each one of us deserves.
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.
Autism Connection of Pennsylvania is thrilled to announce sensory-friendly areas in development at the Family Division of the Allegheny County Courthouse. We explored the facility with The Honorable Jennifer McCrady, the judge who initiated the project, who also took time to answer our questions about the importance of sensory-sensitive spaces.
Judge Jennifer McCrady stands in the Sensory Room in the Allegheny County Family Division Courthouse
Autism Connection: What prompted you to create the sensory-friendly areas?
Judge McCrady: The Family Division is a chaotic environment and can be very overwhelming for members of the community to navigate. The majority of the individuals entering the building have experienced a trauma and may have any number of disabilities. We, as a court, needed to do better to recognize that the physical space was not conducive to the population that we serve. After input from stakeholders, youth, and families, the court partnered with Carnegie Mellon Human Centered Design class to revamp the space and communication. As part of the recommendations from CMU, it was clear that the court needed to make improvements for individuals with disabilities. The sensory room provides a quiet and calm space for an individual in a rather chaotic environment.
Using Physical Space to Create a Sense of Wellbeing
Autism Connection: Is physical space important to a person’s sense of wellbeing?
Judge McCrady: Yes, physical space is very important to a person’s wellbeing. The need for a calm, quiet, and safe space may be critical to helping the individual to successfully navigate the process. As a court and through the many improvements implemented, we are striving to be transparent, promote trustworthiness, and provide the public with a sense of empowerment as they navigate a stressful and hectic environment.
Photo of sensory room in the Family Division of the Allegheny County Courthouse
Autism Connection:What is the first step others can take in creating similar environments?
Judge McCrady: Start small by providing fidget toys to youth, improve signage in the facility, train system players and frontline court employees on how to interact with members of the public in a trauma-informed way. The first encounter with a court employee can set the tone for the rest of the experience. Build toward creating sensory spaces and sensory areas. Improve docket management systems so there is less downtime as well as reasonable expectations for waiting time. Provide quiet and cleaning waiting spaces with access to vending machines and wi-fi service.
Safe Family Resource Center and Wellness Clinic
Safe Family Resource Center: Confidential areas for victims of abuse. Self-contained, private, play space for children and youth with separate waiting and check-in areas for plaintiffs and defendants
Wellness Clinic: Easy access in the Children’s Room staffed by Children’s Hospital professionals, and available for all children waiting for a hearing
Creating the Conditions for Sensory-Friendly, Trauma-Informed Spaces
Judge McCrady anticipates factors that can add to stress when visiting the courthouse. The project addresses these issues by creating safe spaces, using technology, and clear signage throughout the building. Visitors know where they need to be, and when. Details like charging stations Wi-Fi access can alleviate common concerns. The sensory room serves as a retreat where visitors have control of their surroundings.
Comfortable seating with light and sound control
Sensory-Friendly fidget toys
available in every courtroom with many refills accessible by contacting Judge McCrady’s staff
Outdoor retreat
Outdoor playground
Autism Connection:Do you see this work becoming standard practice?
Judge McCrady: We found that there are many foundations and funders who are interested in this type of project and willing to help offset costs. If not for the many foundations that we worked with, we would not have been able to accomplish this project. Our hope is that court systems recognize the impact that trauma can have on an individual, and how important it is for our public court spaces to provide the appropriate and necessary trauma-informed accommodations for those with disabilities. It is an attainable goal.
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.”
The Helpers
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!
Imagine that.”
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 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.
