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.
Many children experience anxiety when it is time to go back to school. For kids with an autism spectrum disorder this can be especially true. Families can make this transition easier by doing a few simple things to decrease the worries and fears associated with the return to school.
Parents and caregivers can reduce a child’s “back to school” anxiety by using the following techniques:
Mark on the family calendar when the first day of school will be so the child is aware of the upcoming change.
Begin to structure the day so that it is similar to the child’s school day. No staying up late or sleeping in.
Have the child engage in meaningful activities that relate to their favorite academic subjects instead of watching television or playing video games.
Plan a visit to the child’s school. This is a wonderful way for the child to see their classroom, meet their teachers, and even get an idea of what their schedule will look like when classes begin.
Talk about positive things associated with school such as learning innovative ideas, seeing peers, and creating new friendships.
Practice with children reciprocal conversation skills so they can feel confident talking to classmates they have not seen in several months.
Point out to children who worry about changes all the things that are still the same in their life, from the smallest to the biggest detail. This technique can be really helpful in reducing anxiety.
Plan a “back to school “celebration by having a special dinner or by making a favorite dessert. This is wonderful “pairing” approach to change a child’s attitude from fear and worry to one of positive expectations and excitement for the coming school year.
Using these strategies is likely to make the process of returning to school a much more positive experience that can be enjoyed by all. For more information, please contact us at [email protected]