We are glad to share that Autism Connection of Pennsylvania has been granted the opportunity to further our mission of being a lifeline and hub for families and adults in the autism community. With heartfelt gratitude, we announce that we have been awarded a grant of $10,000 by the Child Health Association of Sewickley.
We believe in leaving no member of our community behind. Our organization is disability-led, with a passionate team that includes three autistic board members, and 33% of our staff is autistic. We serve people and families from infancy through older adulthood, with a goal that everyone receives the support, information, and advocacy they deserve.
This grant is a testament to our commitment to inclusivity and accessibility. With these funds, we will embark on a project aimed at supporting people who are nonspeaking or minimally verbal, hoping to help them communicate their needs and wants—often for the first time.
Here’s a glimpse of what this project entails.
Project Goals
Link families who have had success with spelling to access academic, social, and healthcare needs
Engage families in dialogue with newcomers for whom traditional speech and language services are not sufficient
Emphasize the concept of presuming understanding on the part of nonspeaking autistic young people and promote literacy from a young age
Educate caregivers about autism brain differences that affect spoken communication
Encourage families to explore new communication methods with support from experienced practitioners
Measurement of Success:
Number of new families introduced to spelling for accessing various needs
Number of families using spelling with some success
Engagement of professionals in training sessions
Distribution of spelling boards at no cost
Involvement of families, teachers, and therapists in implementing spelling
This project aligns with our core values of inclusivity, accessibility, and support. We are dedicated to making a tangible difference in the lives of nonspeaking autistic people and their families, ensuring that communication barriers do not hinder their access to healthcare, education, and social engagement. Together, we can break down barriers and create a more inclusive world for people with autism who need access to communication.
We work to provide hope and encouraging information across all of our media, events, and articles. Occasionally, though, we become aware of negative news that compels us to respond. The recent case of educators abusing three young students with disabilities is some of that bad news. Over the past several decades of our work, we have been consulted on or informed about aversive practices in classrooms all around the state of Pennsylvania. Based on that experience, we are sharing some key points with you.
All families grappling with disability issues in school must rely on the people who call themselves professionals for guidance, and often trust that those in charge have ethics, high standards, and the knowledge needed to guide and educate students in their care. Unfortunately, as in any profession, there are people out there being paid to do their jobs who behave in unethical and sometimes criminal ways.
But how does anyone know what’s right, what’s wrong, and what to do if they get a bad feeling about a person, classroom, or school, especially when dealing with students who have communication difficulties? Here are some tips you could use in decision making about these situations.
Tips for Decision Making
1.) Trust your gut – often said in terms of protecting ourselves from victimization in things like street crime, this also applies to protecting children or adults with disabilities. It’s easier said than done, though. If you get a bad gut feeling, you could request classroom observation for starters to see how your child interacts with or responds to the adults in the room.
2.) Behavior is communication, so watch for school avoidance behaviors (stonewalling on the tasks needed to get out the door, bus refusal, not getting out of the car at drop off time, bed wetting, afterschool distress). Some of these things may be normal separation anxiety, but a pattern or intense behaviors may signal a scary school situation the person does not want to experience. People with regular transition issues who exhibit avoidance in going anywhere is one thing, but if these happen mainly or only regarding school, that is something to pay attention to.
3.) Listen and share with others – talk with parents, teachers, random school observers, and see if you get any inklings on classroom problems. Pay attention to anyone who comes to you asking for help from inside a school – sometimes politics get in the way, and you may be surprised to find adults who cannot or will not do the right thing in the face of obvious abuse, in order to protect their own self-interest and job.
4.) Insist on mandated reporter training on a regular basis in your school. You can do this via parent teacher organizations, via your own Individual Education Program (IEP) process, or sometimes by just requesting it from the district office or building principal. If this is done routinely already, ask to sit in and invite other parents and guardians to participate as well. Keeping this on everyone’s radar is the safest and healthiest thing for a school climate.
5.) Beware the “local autism expert” teacher who may have misled their colleagues about best practices. We have seen or heard of some appalling ones such as:
Overcorrection of a kindergarten student who wet their pants and was made to take them on and off repeatedly dozens of times in response on many occasions
Aversive tastes forced into someone’s mouth
Repeated “nagging,” taught as a technique, which was actually bullying students by loud and forceful repeated commands they could not process auditorily until they tried to leave, resulting in hands on restraints which escalated to panic fight or flight response
Forcing students with sensory issues hands into aversive textures that made them gag (handling goo is not an academic goal nor a skill needed in adulthood)
Public shaming in front of students and adults
Multiple staff repeatedly dragging a high school student by the arms to the bus in September after the student had been in a bus accident the previous June
Sadly, the list goes on.
When things are disrespectful, punitive, fly in the face of disability needs, and are something you would not tolerate as an adult, they are likely not educational and may be abusive.
Safe Educational Environments are Crucial
As advocates, we recognize the vital role that education plays in shaping lives. The recent distressing incidents of educators mistreating students with disabilities underscore the urgent need for vigilance and action. Our decades of experience have shown us that, despite the majority of dedicated professionals in the field, there are instances where some lack the ethics and standards necessary for this responsibility.
In navigating the complex world of education, especially for those with communication difficulties, it becomes imperative to trust your instincts, observe behaviors, and foster open communication with other stakeholders. The provided tips for decision-making serve as a guide for parents, guardians, and concerned individuals to actively engage in ensuring the well-being of students.
It is crucial to remain vigilant against practices that are disrespectful, punitive, and go against the fundamental needs of people with disabilities. By staying informed, advocating for mandated reporter training, and fostering a culture of transparency, we can collectively contribute to creating safer and more supportive learning environments for all.
What to Do if You Suspect Abuse
Contact the school’s administration about your concerns and request unannounced visits to the classroom.
Include mandatory training for reporting suspected abuse, and training for positive behavior supports in the Special Education Services section of your child’s Individual Education Program (IEP). Visit PaTTAN’s website for Customized Professional Development and Technical Assistance.
Email [email protected]to alert the Pennsylvania Department of Education (PDE) about suspected abuse.
Students who are concerned about abuse in school can visit Safe2Say Something for information about making an anonymous report.
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.
We are powered by an amazing board of trustees who actively engage in the work we need to in order to be a lifeline for families and adults, which is our mission. One of our unsung heroes is the Hon. William F. Ward (Bill) who serves on the Pennsylvania Commission on Crime and Delinquency (PCCD). As PCCD’s representative, Bill was key in creating funding opportunities in this Behavioral Health Commission Special Report. Follow the link below to read the full report.
Behavioral health rates, network adequacy, and mental health payment parity
Workforce development and retention
Expansion of certified peer support specialist services and peer-run services
Development and provision of crisis services
Integration of behavioral health and substance use disorder treatment
Cultural competencies when providing behavioral health care
Impact of social determinants of health on behavioral health
Intersection of behavioral health and the criminal justice system
Establishment of an integrated care model that can deliver timely psychiatric care in a primary care setting
On page 7, the Commission recommends that we “develop and expand upon pre-arrest diversion programs that connect people with resources in a time of crisis, including individuals with intellectual disabilities and with autism spectrum disorder.”
Bill Ward took a few moments to answer some clarifying questions about the recommendations:
Bill Ward, Past Chair, Autism Connection of PA Board of Trustees
Autism Connection: What does “pre-arrest” actually mean?
Bill Ward: There are two different types of arrests. There is a custodial arrest, which is when a person is detained, is not free to leave the scene, placed in handcuffs, and removed to the local police department. (There are also non-custodial arrests, such as when a person is given a citation or ticket for a summary offense but is allowed to leave the scene without being processed at the local police department.) The concept of “pre-arrest” is focused upon those encounters or incidents where the police have the discretion to not detain and charge a person, but instead would “divert” them from being criminally charged. In my mind, “pre-arrest” is too narrow a restriction. More often, the police will detain and charge a person. Even so, much good work can be done to divert the offender after the arrest but prior to the Preliminary Hearing, usually set for 10 days later.
Autism Connection: Can you give us a brief description of the co-responder model? Is there a good resource for this model?
Bill Ward: One definition is: “A model for crisis response that pairs trained police officers with mental health professionals to respond to incidents involving individuals experiencing behavioral health crises.” Here’s a link to an article discussing the co-responder model:
The BHC Report recommends that $5 million be dedicated to counties to develop or expand co-responder models, and to train first responders in crisis intervention.
Autism Connection: Anything you’d like to add?
Bill Ward: Yes. While $23.5 million is recommended to improve the criminal justice and public safety systems, $5 million (of the $23.5 million) will be to develop and expand upon pre-arrest diversion programs that connect people with resources in a time of crisis. The Behavioral Health Commission was receptive to put in that such funding expressly include “individuals with Intellectual Disabilities and with Autism Spectrum Disorder.”
Autism Connection of Pennsylvania recognizes the tireless dedication our Board of Trustees demonstrates. When you see something that speaks to your need, know that our awesome board has had their fingerprints on that – for our literal minded readers, this means they have inspired, worked on, or supported that activity in a meaningful way.
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.
Lu Randall
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