Education – Autism Connection of Pennsylvania

Gia sitting on a chair instructing a class

IGIA Movement for Health Visits Autism Connection of PA

IGIA Movement for Health is well known in Pittsburgh, Pennsylvania for its innovative approach that incorporates various somatic practices like yoga, meditation, Hanna Somatics®, and dance to tap into the power of internal movement, stimulate new neural pathways, and improve the mind’s regulation of posture and emotions.

For the autism community, sensory overload and difficulty with interoception can interfere with the ability to recognize and manage emotions, so Autism Connection of PA was ecstatic to be invited to host IGIA Movement for Health for three pilot movement workshops. Three Rivers Community Care is also hosting a class on August 12th.

Care practitioner and IGIA Co-founder, Gia Cacalano, leads the Master Classes, taking cues from attendees to form her approach. IGIA movement practices can be done both seated and standing, they’re accessible, and no two classes are exactly alike. Co-founder and CEO, Harris Farris quietly participated in the first pilot class along with a small group. One autistic participant shares her experience with the class, and encourages others to attend.

Experiencing IGIA for Movement Master Class

I honestly didn’t know exactly what to expect, which can be a great source of anxiety. It was hot outside, and even though it was only 10:15 in the morning, I was already feeling overwhelmed with sensory overload. At least I think that’s what it was. Sometimes it can be difficult to identify what is going on with me, both physically and emotionally. I also realized that I had lost track of time and was running late.

The room was open and large with soft lighting. The instructor, Gia, was welcoming, the number of people in the class was small, and I had a great sense that I could just be myself. Gia explained that there is no wrong way to do the movements, and described how each movement affects the body.

Relaxes the nervous system
Spatial awareness in the environment
Internal spatial awareness – how I moved and how those movements related to how I was feeling
Observational rather than judgmental – no worries about being right or wrong, just noticing
Feeling less self-conscious – less resistance to trying something new
Sense of calm

Video: Harris Ferris demonstrates some simple movements

I recognized some of the movements and I thought, “Hey! These stem from stims!” Self stimulatory behaviors (or self-regulating behaviors) often serve a purpose, and I was perfectly happy to do some hand flapping that transformed into more delicate movements. It turns out that flapping and jumping ignites the lymphatic system, and can improve the immune system.

Visual stims were also weaved into the movements. We worked on eye tracking along with slow, intentional head movements that seemed to broaden my peripheral sight. I was able to take in the entire room visually rather than focusing on specific elements.

“Rocking is a controlled fall,” the instructor said. This statement stuck with me because I usually fight the urge to rock back and forth to calm myself. The slow, intentional rocking movements were among my favorites, and it was especially helpful to know that we were working on balance along with body awareness.

Time passed quickly in the movement class, and even though there was no rigid structure, the instructor came full circle and this helped me recognize that the session was coming to a close soon. We began and ended with foot movements, gradually rocking to a standing position.

I felt grounded and calm after the session, and I continued to notice when my muscles (especially in the shoulders) were getting tight throughout the rest of the day. I can see how practices from the movement class could help me regulate emotions after sensory overload, or when I struggle with interoception (during times when I feel disconnected from what I’m feeling, whether an emotion or hunger, fatigue or thirst).

This was the first of three sessions, and they are off to a great start.

Gia notes that “even simply being present in the room–just observing and breathing–changes the dynamic. Even if someone showed up and just focused on breathing, that would be a complete session.”

If you want to learn more about IGIA for Movement Master Class, please visit IGIA Movement for Health.

To participate in upcoming classes August 10th and 12th register here.

Goodwill Hose Company Ambulance parked on a sunny day

Disability is Not a Crime Training in Lock Haven Pennsylvania

We were thrilled to visit and teach new friends from the first responder community in and around Lock Haven, PA this past week. We listened to our audience’s experiences and training goals, learned how tremendously professional and caring they are in their work, then launched into delivering “Disability is Not a Crime” content.

Everyone in the room had autism or an autistic relative, and one learner manages two autistic employees, so engagement was high. The conversation was so fantastic we stayed well past the end time of 9:00pm, thinking of creative ways to support autistic people in emergency situations.

Blending an autistic presenter (who is an EMT) and a non-autistic trainer seems to help people feel comfortable asking questions no matter their personal experience. We left feeling a little sad that we don’t live closer to experience their beautiful area and work together more to support folks with disabilities in the region.

Huge thanks to Goodwill Hose Company Ambulance Association for hosting us! And thank you to the attendees for sharing stories of finding missing persons who wander (some multiple times), supporting autistic people in car accident responses, and for telling us a few rattlesnake stories we don’t often get to hear!

Since we were at an EMS base for the training, we had the opportunity to take some photos of equipment. We will be using the images to help people understand what to expect in emergency situations in an ambulance. People may be safer if they know a little more about what to expect when they are sick or injured. Believe it or not, it is not uncommon for people to be arrested and charged for fear-based behaviors they may have during emergency situations, when they are injured or sick on the scene, or in an emergency room.

This project is funded by the Pennsylvania Developmental Disabilities Council.

Child Health Association of Sewickley Grant: Spelling

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.

Thank you for being a part of our journey.

Empowering Connections: Sophie’s Potluck, A Special Journey

In this uplifting interview with Amy Hart, the driving force behind Sophie’s Potluck, we delve into the story of Sophie, a vibrant 14-year-old on the autism spectrum. Amy shares the inspiration behind starting Sophie’s Potluck and the unique experiences they offer to the community. From the adorable blue peacock logo to the diverse array of activities, this initiative aims to create a supportive and inclusive space for families. Discover how Sophie’s Potluck is fostering connections and providing opportunities for growth.

Tell us a little about Sophie.

My daughter Sophie is 14 years old and an 8th grader in the Pittsburgh Area. Sophie is on the autism spectrum and and can’t always communicate her needs.

Sophie’s signature bow

What drove you to start Sophie’s Potluck?

During the winter, I was looking for new activities that I could do with our friends. We typically paint monthly at Splat: A Make and Take Art Studio in the Pittsburgh Area, Pennsylvania. Everyone really enjoys themselves each time and my friend, John Novogurski, (who created and runs the Sophie’s Potluck webpage) and I thought it would be fun to do something more frequently. So we came up with the idea to run the website so we can notify people of our events, and let people register online.

Getting creative

I am always looking for new opportunities for Sophie to try and then ask friends to join us. Then I started thinking of ways that we could really start to explore some venues that we wouldn’t typically think of going to. With a little brainstorming and lots of support, I began emailing different places all over the city. We hope to grow from here.

Sophie’s Potluck logo designed by April Watt Little and Cheri Foote

Your logo is an adorable blue peacock cuddled next to a cooking pot. What’s the story behind this image?

I always have a bow in Sophie’s hair to keep track of her, and she loves peacocks. It started as a little inside joke, but John came up with the name because when you host a potluck, everyone brings something to eat. So with Sophie’s Potluck, we wanted everyone to bring their best! My friends April Watt Little and Cheri Foote collaboratively took the name and created the logo for us.

What kind of activities do you offer?

We work with all kinds of venues to bring a wide array of experiences to our special needs friends. Our first “official” event was a 45 minute zoo encounter, where the educators there taught us about arctic animals, and brought a few animals (some arctic, some not) out for us to see. It was a wonderful experience for our friends! Our upcoming events include a trip to a farm, we’re building our own terrariums, and creating our own bath bombs! Many other events are in the works.

Sophie’s Potluck Zoo Encounter

Are there opportunities to volunteer?

Yes! With some events, we are limited to the number of people that are able to participate. However, when we have the space, we LOVE to have volunteers come and join us.

Are there opportunities to host events?

Absolutely!! We are open to try anything! You can contact John or me on the Sophie’s Potluck website.

Any ideas or advice for parents and caregivers with autistic loved ones?

I think that we as parents and care givers are a village that need to learn from each other. I have also found that we just need to ask and many people are interested in helping us, as a group, gain new experiences and learn about the world around them.

Sophie’s Potluck not only serves as a platform for unique and enjoyable experiences, it also stands as a testament to the strength of community and collaboration. Amy’s journey is fueled by a desire to explore new possibilities for her daughter and others. As the initiative continues to grow, offering a range of activities and welcoming volunteers and event hosts, it becomes a shining example of the power of collective support. For parents and caregivers on the autism spectrum, Sophie’s Potluck offers not just events but a village of shared experiences, proving that together, we can enrich the lives of our loved ones and learn from one another.

Industrial door opening to a hallway with lockers

Aversive Practices are Abuse

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.

Charcoal drawing of a grief stricken man standing next to a washer and dryer

Who Will Do the Laundry? The Double Empathy Problem

The Double Empathy Problem

“The most important thing in communication is to hear what isn’t being said.” – Peter Drucker

The double empathy problem posits that difficulties in social interaction are not solely the responsibility of the autistic person, but also result from a lack of understanding and empathy from people who are not autistic.

Explaining the double empathy problem poses its own challenges, so I’m quite literally illustrating the concept with a question: Who will do the laundry?

Who Will Do the Laundry?

Autistic grief is authentic, deeply felt, almost tangible. And it can manifest in a way that can be baffling to non-autistics. We have seen this when someone on the spectrum receives news of the loss of a parent or caretaker. “Who will do the laundry?” is a type of question a person on the spectrum may ask. It can seem pragmatic, almost unfeeling, but it is a distilled expression of grief concentrated into an overwhelming question.

Difficult to explain, so I’ll illustrate.

Years ago, a close friend who is not on the autism spectrum talked about the loss of his mother to breast cancer when he was 11 years old. Her death was an abrupt devastation. When he spoke about the experience, he formed descriptions of being snuck into her hospital room for brief visits, and even with her deteriorating state, he thought that she would eventually come home.

She never did. But the feeling of her possibly returning lingered. “I remember the moment I truly understood that she wasn’t coming back. I went to the basement to find my father standing next to piles of laundry. His head was bent. He was sobbing. And I knew that I would never see her again.”

Who will do the laundry?

Charcoal drawing of grief stricken man standing next to a washer and dryer

This is how the question Who will do the laundry? feels.

An Overwhelming Question

Who will do the laundry? is an expression of grief concentrated into a plea that really captures the questions, “What is life without them? How do I go on?”. When an autistic person demonstrates grief in this concrete form, a non-autistic person may perceive a lack of empathy. In turn, the autistic mourner may feel that others have no empathy for their despair, depending on their reaction to the overwhelming question.

My friend’s description of the laundry room scene illustrates his father deeply grieving with echoes of Who will do the laundry? quietly implied. In both cases, it’s not about the laundry. It is about the loss.

Tammi Morton, Director of Operations

children using an iPad for assistive technology in a classroom

Guest Blog Post: Autism and Assistive Technology

When my son was 4 years old and had no verbal words, I knew we needed to find a communication method that worked for him. Getting over the barriers to access AAC (Augmentative and Alternative Communication) didn’t come fast or easy, but because we were unrelenting in the belief that he had the right to communicate, we are here.

So where are we? Well, he – and we – are on the second day of the new adventure of middle school. Yes, middle school. A lot has certainly changed since the acronym AT (assistive technology) became part of our vocabulary. My son has matured and grown almost as fast as the technology has.

Helpful Assistive Technology Resources

Proloquo2go has been my son’s go-to communication app for years It’s fully customizable. He has a dedicated iPad for his communication app and his communication app only. There are several app options, but this one fit his needs and has grown with him.
Snap Type Pro 2 App – to assist with independent work.
Clicker App – to promote independent writing.
Anti-Glare screen protector to help improve focus.

Text leveling apps modify the text to be simpler to fit a student’s reading/comprehension skills while allowing them to access the same content as other students:

Intermediate Units and Training and Consultation Teams

The information above is courtesy of a report shared with us after a new AT Consult was done with a consultant from our IU (Intermediate Unit) who is a part of the TaC (training and consultation) Team.

You can find your Intermediate Unit by visiting the PA Intermediate Unit (PAIU) website.

AT Your Service: The Crucial Role of Assistive Technology (AT) Specialists

Please remember, these are examples that were identified for my son to trial. AT and AAC should be person-centered to meet the needs of each student, and that includes having time to trial options, not just forcing options. Conversations about this should be ongoing, as students and technology change, it’s important to review and revise. Students should also be a part of these conversations.

Technology is so helpful to all of us, I hope this piqued your interest in exploring what is out there.

Melissa Skiffen, Disability and Family Support Advocate

Achieva