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 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.
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!
One day a week I take myself to the office, the rest of the week I work remotely. The fluorescent lights in the office are not kind, and it takes me an hour to de-escalate myself once I get home. Sensory overload is real and it is hard. I wasn’t always aware of my sensory needs, and I still struggle with coping, but my son taught me how to identify obstacles in the environment. They were always there, and sensory overload affected me, but I am a product of the 80’s and 90’s growing up, and we certainly didn’t talk about sensory needs. You just dealt with it, or didn’t, but regardless you did it quietly.
Fast forward to having a child who was diagnosed with autism.
As a parent of a child on the spectrum, I had a large learning curve and I needed to maneuver it quickly. One day he didn’t have autism, and the next he did. Now I know, autism was always a part of him, this is what I mean by learning curve. In the beginning, I was circumventing the curve by doing everything others told me I needed to do to “cure the autism”. The focus was on changing him, not on creating a space where he could thrive. If he wasn’t in therapy or working on targeted skills, we were wasting precious time to “fix” him. False. False. False.
Let me stop here and replace cure with cope and also say that speech, occupational, physical therapy, and skill building can happen in all the places all time. Children need space to be children and their adults need space to just be supportive adults. And while we’re replacing words in our vocabulary, let’s replace compliance with cooperation. But we can talk more about compliance vs cooperation in a future blog.
We have so much to learn from people, especially children. Once I began focusing on coping, rather than fixing, everything changed. When I learned to listen to what my son was communicating but wasn’t verbally saying, everything changed. My son changed my entire view moving forward and made me realize I needed to reflect inward. The space I was trying to create for him to thrive, I learned, I also wanted. I didn’t want to just “get through it” anymore.
Actively listening to my son smashed my rose colored glasses and showed me the beautiful world of diversity and inclusion. I learned how to identify and advocate for what I needed to be comfortable. I learned that asking questions and genuinely wanting to get to know about people and what is important to and for them, helps us all grow and create safe spaces. I learned that as I’ve shared how I feel or what I’ve experienced, many others say “me too!”, which creates a welcoming environment to share what is in their hearts and in their minds. I learned to meet people where they are. Even though I’m much older than my son, it’s been a life changing experience to learn together that neither of us needed fixing.
This is a reminder to let the children lead us and teach us.
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.
International Epilepsy Day is observed annually on the second Monday of February to raise awareness and to promote understanding and acceptance. The theme for International Epilepsy Day 2023 is “Epilepsy in the Workplace,” which highlights the challenges people with epilepsy face at work, and the importance of creating inclusive and supportive environments.
The earliest mentions of epilepsy can be traced back to Babylonian tablets from around 2000 BCE, where it was referred to as the “sacred disease.”* In ancient Greece, the physician Hippocrates wrote extensively about the condition, and attempted to distinguish it from other conditions, such as possession by demons. The word “epilepsy” itself comes from the Greek word “epilambanein,” which means “to seize.”
Epilepsy and autism are two distinct medical conditions, but they can co-occur. According to the Centers for Disease Control and Prevention (CDC), approximately one-third of people autistic people also have epilepsy. This overlap is more commonly seen in people with severe autism and intellectual disability.
Epilepsy is a neurological condition characterized by recurring seizures, which are sudden and brief disturbances in the electrical activity of the brain. There are many different types of epilepsy, and the exact cause of the seizures can vary. Autism, on the other hand, affects communication, social interaction, and behavior. It is a spectrum disorder, which means that the symptoms and severity can vary greatly from person to person. It is important to note that while epilepsy and autism can co-occur, one does not cause the other. If someone has both conditions, they will typically receive separate diagnoses and treatment plans for each.
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
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.