Education – Page 3 – Autism Connection of Pennsylvania

Landscape: Lessons Learned

Looking for a way to positively impact an autistic teen or adult in your orbit? Consider hiring them to cut your grass. I’ve done this twice and here is what I have learned so far:

Grass cutting is a social skill.

Grass cutting requires knowing what the boss wants the lawn to look like. My first employee was a man with intense support needs who is non-speaking and always thinking! He loved cutting with a rotary mower – the old fashioned kind your gramma had. That made a kind of grass “confetti” he loved to create and then watch it fly. This means he really liked to cut grass in short, choppy bursts, and his original method made results akin to crop circles.

Did I care? Not really. Did I shape that behavior to straight lines anyway by standing across the lawn and asking him to come toward me? Yes, over time, since maybe he could transfer this skill to another customer. But to be honest, the artist in me loved the crop circles and I kind of miss that lawn art.

Expect an eye for detail.

This same young man learned to “look for it” when prompted – he would look around for the longer patches of grass, and take a run at them. He enjoyed this method and it took advantage of his strong visual system. My second helper might pause as falling maple seed “helicopters” fly by. Those catch his eye for a few seconds. That’s okay. He still gets the job done really well and with a great attitude.

Pay real money, at market rates.

If someone is doing a job for you, it’s only right to pay what someone else would make if the end result is similar or even better! Pay immediately (I am working on this as cash on hand is not something I am used to having). This reinforces the work behavior and is most respectful.

It’s okay to pay in advance.

And teach what an advance means. Sometimes I do this because I only have $20 dollar bills, and our rate is an odd number. But I still want to pay on time so I give and talk about an advance, especially noting that not all bosses do this – I don’t want to set up an unrealistic expectation for his next job. Hold the person accountable to the task owed to you in a timely manner so everyone wins.

Appreciate behavior you may not expect.

My second lawn person laid down on the grass the first time he cut it to eyeball everything, making sure it was even. He looked like a golfer lining up a putt. I said “You are super attentive to detail and that’s admirable.” He didn’t feel the need to check like that after the first time he made sure things turned out right. I did not correct him – he seemed satisfied with that one and only quality assurance check.

Again, win/win.

Point out visual results.

My autistic friends tell me the best jobs are ones where they can visibly see change as a result of their work. Recently I taught my new helper how to manually edge the lawn. Once he got the hang of it, the work went quickly. Then we stood and I pointed out how neat it looked, and once he focused on that, he smiled. The next time he cut the grass, he finished, stopped and looked around at both the edging and the lawn, and said for the first time “Look how great it looks!” It’s possible he missed that in the past and didn’t look at the big picture. Helping people appreciate their own good work is a great practice we all could do more!

Don’t sugar coat things.

If you ask your employee to do something new, you may hear “I don’t want to do that.” Explore what he or she is thinking. That may mean “I’m not confident in that skill” or “I have no idea what you expect,” or “I don’t like it.” Help the person learn the new thing if that’s what you think is going on. And if it’s truly “I don’t like that weed whacking” then it’s okay to say, “Well, I can’t pay you for that part then if I need to do it myself.” Fair is fair, and teaching this early on is respectful.

In the same vein, if something is done poorly, point it out and ask why they think that happened. Maybe they got distracted and missed a spot. Or you may hear something like “Well, it’s been a really long time since I’ve done that,” which may mean, “I don’t remember how” or “I don’t know how and I am too shy to say so.”

Give the person time to explain and see what you as a supervisor can do to help. Autism is in part a communication disorder and sometimes it takes a little detective work to figure things out and that’s okay.

Know what motivates the worker.

In my current situation, money = Apple products. The request for a very significant raise this season was because this worker wanted a new tablet. I explained that bosses pay a rate for a job regardless of what the employee might want to buy and that a financial goal is not the employer’s concern, but it’s really good to have one. This led to a discussion about fair market rate and about the cost of living increase over last year. So this worker negotiated a raise, just a smaller one than he proposed, and not one based on the latest tablet upgrade he wants. Last night I paid him cash immediately and he exclaimed “THIS IS A NEW APPLE PENCIL!” Tying cash money to a tangible spending goal is a really great skill to see in a young worker! And it honestly reinforces my having cash on hand for him.

Teach about how this job can help get future jobs.

We have had discussions about what other jobs my helper is interested in (restaurant work). We’ve talked about me as a “reference” and discussed how new bosses want to check references. “Are you on time? Do you learn fast? Do you take correction with a positive attitude? Do you finish your work? I would say YES to all those things. That makes me a good reference.” This got a response of “OH!” and now this young man knows a new thing about the hidden curriculum of work.

I learn more every single time it’s lawn cutting day. This current worker decided to leave one third of the job to do today because he likes getting paid twice in one week, it seems. Or maybe yesterday he met his goal of an Apple pencil, and today he is starting over with a new quest. That’s fine with me.

Having his help sometimes feels priceless! I benefit from his positivity and also of course, from the labor I don’t need to do so I can focus on other chores. So I recommend you think about that kid down the block, or a relative perhaps, and consider being their first boss. Who knows, you might kick off an entire career for someone while making your life a little easier in the process.

Classroom with children sitting on a circle mat eagerly raising hands

Opinion: Sorted Children Lead to Sorted Adults

I walk into school on my first day of kindergarten and an adult points me in the direction of my classroom. Whew. Made it! I’m in the “Trauma, Depression, Anxiety, OCD, Autism classroom”. It’s where people like me go to get the support they need. Next door is the “Hearing Impaired Wheelchair User classroom”. Okay, so yes, I’m being over the top. Realistically, when I was in kindergarten 30 years ago, we didn’t talk about mental health and anyone with autism was “taught” in another school or in the basement.

“It is absolutely absurd that we sort people with disabilities. We sort them in school. We sort them at work. We sort them in the community. We wouldn’t do this to people outside of the disability world. So why do we do this to people with disabilities?”

LRE is an initialism that came into my world when we were preparing for my son to begin his school career. LRE stands for Least Restrictive Environment, and it basically means that students with disabilities have the right to be educated with their typically developing peers in general education as much as possible for each student. “Each student” means that each student needs something different to be successful, not each student with an autism diagnosis needs an autism support classroom. I said it. Many students don’t need to be in classrooms with their diagnosis on the wall to be successful.

Let me share an example. My son attended a preschool and was in a classroom where all the students had a diagnosis of autism. He would come home from school twisted in knots from overstimulation. Why? Because much like my son had behaviors (not always negative but certainly loud and many), so did the other students in his room for five hours a day.

First, they were four years old and that’s what four-year-old children do. Second, his wants and needs didn’t always mesh with everyone else’s. My son needed a structure and routine that flew in the face of other students’ necessary structure and routine. With these conflicting needs, the students would implode or explode, and need to recover. It is hard to learn feelings and coping skills when the classroom (the world) is loud.

The knot twisting stopped when he went kindergarten and was in the least restrictive environment (LRE). He started in general education, and attended with 20 other students, with the support of a paraprofessional. Start with inclusion and adjust when a student communicates they need something to be changed.

Oftentimes, what is needed is not a segregated space where all the autistic kids go, it is person-centered support in inclusive, safe spaces where everyone can be themselves to learn, practice coping skills, and build healthy relationships with themselves and others. This applies to all students. They learn from each other, and they have the right to have access and explore learning opportunities within the general education curriculum, including health education. This doesn’t always happen in the segregated settings.

There is only one world we all live in. We should not be modeling for any student that it is a best practice to sort people by a diagnosis.

E.R. Heffel

Image of a head silhouette with colorful crumbled papers raising above it

You Can’t Accomplish Just Anything You Want

Thanks to our great support network we were able to do a quick turnaround and prevent the likely loss of a career for someone who recently reached out to us for help. We were so grateful for all the forces that combined and allowed us to be our mission of “a lifeline of support.”

M. had been “in love” with a young person they met over ten years ago. While they never had an in-person dating relationship, a heart was captured and imagination took over. Sending poems, emails, texts, flowers, candy, and more, can be lovely gestures when welcomed, but wound up being scary and threatening to the love interest who did not welcome them. Finally, a protective order was filed in an out of state court. The first order covered 24 hours, the second, two weeks, and three business days following our first call with the accused, the court would hear and see evidence to produce a two-year Protective Order which would have cost our new client their job.

Hearing someone so distraught, tearful, hopeless, and being baffled by this turn of events kicked us into high gear. This college educated professional was stuck in emotions and had no idea what to do, nor if they needed to appear in court despite simple court paperwork clearly stating they needed to attend in person. There was no plan, no lawyer, no defense strategy, and only three days plus a weekend to work with. Fortunately, this person immediately reached out to and signed up with both referrals we provided, one being a defense attorney licensed in the state of the proceedings, and the other, a therapist who provides services for those in the justice system. We owe a debt of gratitude to board trustee Tiffany Sizemore who provided the out of state referral, and to Shawn McGill who immediately took the call and offered his professional help.

The judge heard both sides of the case in great detail on the day of proceedings, taking autism into consideration but not focusing on it. And much to the surprise of most involved, including the defendant’s attorney, the judge did not place our client under a Protective Order because he did not hear criminal intent nor malice, and believed the testimony that they were moving on permanently and would never contact the plaintiff again.

We talked that night after it was all over, and I asked a question I have often thought about. “What rules did you follow that you learned growing up as a kid that may have led to trouble in this situation?” And right off the bat the answer was “Follow your heart. And if you work hard enough, you can achieve anything!”

Now, that last one is not true for any one of us! And while we routinely use phrases like these, they can lead some to overly apply them very literally and not know when to change course. Positivity is sometimes helpful but it can become toxic. So please consider the individual when you use encouraging words. We were lucky in timing and that we know the best network of helpers, but this was such a close brush with disaster that the client wanted us to teach with this story. In their own words spoken the night after things cleared up, “I just want to give presents to everybody who helped me. And I am a first grader in terms of dating – I was in love with a mirage! I ‘m definitely going to do the counseling too. But overall I want to tell this story and help make sure this never happens to anyone else, ever again!”

photo of a drawing of two children standing alongside a third child in a wheelchair. It's a child's sketch and it's lying on a table surrounded by colored pencils and markers.

Let the Children Lead Us and Teach Us

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.

E.R. Heffel

blue lines that look like light in the shape of a brain with dots connecting neurons International Epilepsy Day

International Epilepsy Day February 13, 2023

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.

If you have questions about epilepsy, visit our friends at the Epilepsy Association of Western and Central PA.

** “The Diagnostic Handbook: A Babylonian Terrestrial Atlas” by Emma Wasserman, Brill, Leiden, 2000.

Woman facing camera holding a mirror that reflects her eyes back into the camera

Is That All You Got?

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.

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.