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.

Child Health Association of Sewickley Logo

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 bow

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.
close up of teenager painting

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.

logo with a peacock snuggled next to a cooking pot

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.
Children exploring the zoo

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.

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.


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

 

 


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.


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 


Interoception: Body Awareness Exercises

What is Interoception?

Many of us understand and explore the world through the five senses: touch, smell, taste, sight, and hearing. But there’s another important sense called interoception. This sense helps us become aware of signals from inside our body, like feeling our heartbeat, noticing when we’re hungry, or realizing we need to use the bathroom. 

Interoception means feeling and making sense of (sensing) messages from inside our body, like when our stomach tells us it’s time for a snack, or when our heart starts to race. We don’t focus on these messages all the time, but there are moments, like when we have to speak or present in front of the class, or when we’ve seen something scary on television, or have been very late for something important, that we might feel our heart thumping really hard. Different parts of our brain keep an eye on these inner signals, making sure everything is working well and trying to give us awareness (giving us a heads-up) in case we need to make a change, like get a snack, take a break, or use the bathroom.

Think of it this way: your brain acts as a helpful guide, noticing things like when you might need a drink because you’re getting a bit thirsty. It’s like your body’s alarm system, making sure everything stays just right. The balance – when things are all working right – is called homeostasis. It’s the way our body works to keep us healthy, safe, and feeling comfortable, almost the same as when we sweat to cool down if we’re too warm. For some, awareness and response are automatic, but for others, there can be a disconnect. Body awareness exercises can help develop better interoception and lead to homeostasis – a best state of health and safety. 

Body Awareness Exercises for Autistic People

Body awareness exercises for autistic people can help them develop a better understanding of their internal sensations and emotions. These exercises can be adapted to interests and sensory preferences, so look for teachable moments in your daily routines and preferred play activities. 

Sensory Exploration – Outside In

External sensory experiences have an impact on what happens internally. When engaging in sensory exploration, be mindful of how each activity either calms or excites you.

  • Use textured materials like fabrics, sponges, or sensory balls.
  • Dig into sensory bins. Note how the textures and movement feel, and notice its calming effects.
  • Explore different textures (sand, playdough, textured fabrics) and discuss how each texture feels against the skin.
  • Engage in mindful eating activities, paying close attention to the tastes, textures, and sensations while eating.
  • Lie down on a large sheet of paper and have someone trace your body outline. Then, color or label different sensations you feel in each body part.
  • What’s that smell? Choose favorite scents and talk about how the fragrances make you feel. 

brightly colored sensory bin

Movement Games

  • Simon Says: Play a game of Simon Says with movement commands that target specific body parts (touch your toes, clap your hands).
  • Dance or Follow-the-Leader: Encourage imitation of various movements and poses.
  • Lie down or sit comfortably and guide attention to different body parts, and notice sensations, tension, or relaxation.
  • Child-friendly yoga poses that focus on different body parts, such as Tree Pose, Cat-Cow, and Bridge Pose, can promote body awareness.
  • Tense and relax different muscle groups while discussing how it feels to tense and then release the tension.

four children in yoga poses

Mirror Activities and Emotions

  • Stand in front of a mirror and make faces to recognize facial expressions associated with different emotions. Imitate your mirror partner’s gestures and expressions.
  • Mimic different body movements and gestures to increase self-awareness.
  • Act out different emotions and discuss the physical sensations associated with each emotion.
  • Use a visual “emotion thermometer” to help identify and rate your current emotional state and associated physical sensations.
  • Guide someone, or have someone guide you, through a calming and sensory-rich imaginary experience, such as walking on a sandy beach or exploring a forest.

Mirror games with adult imitating child

Breathing Exercises

  • Inhale slowly through the nose, imagining inflating a balloon in the belly, and exhale through the mouth to deflate the balloon.
  • Hold a feather close to the nose and practice inhaling and exhaling gently to make the feather move.
  • Place a small object (feather or cotton ball) on your stomach and breathe in and out to make the object move.
  • Blow bubbles

father and toddler blowing bubbles


Interoception and Occupational Therapy (OT)

Occupational therapy (OT) for interoception involves structured interventions and activities designed to enhance awareness and understanding of internal bodily sensations.

Assessment and Baseline: Begin with an assessment to determine current level of interoceptive awareness and identify specific areas of difficulty. This baseline will guide the development of a tailored intervention plan.

Education: Provide information about interoception and its importance. Communicate that internal sensations provide valuable information about their body’s needs and emotional states.

Individualized Goals: Collaborate to set interoception-related goals and track progress over time.

Communication Skills: Learn to communicate internal states to others. This is particularly important for people who struggle to express their needs or discomfort.

Visual Supports: Use visual aids, charts, or diagrams to help understand and express internal sensations.

Biofeedback: Use biofeedback devices to visually or audibly represent physiological processes like heart rate or breath. This helps make the connection between internal sensations and these processes.

Hygiene Routines: During hygiene activities, notice how different sensations change during tasks like brushing teeth, washing hands, or taking a shower.

Environmental Sensations: Explore different sensory experiences in the environment, such as temperature changes or textured surfaces, and discuss how these sensations affect the body.

Mindfulness Practices: Incorporate mindfulness techniques, such as body scans and mindful breathing, to help focus on internal sensations and recognize changes as they occur.

Emotion Regulation: Teach emotional awareness and regulation strategies. Identify bodily cues associated with different emotions and develop coping skills to manage emotional responses.

Social Interaction Activities: Incorporate activities that involve social interactions, helping to recognize and respond to social cues related to emotions and bodily states.

Daily Journals: Keep a daily journal to record experiences, emotions, and bodily sensations. This practice promotes self-reflection and awareness.

Interoceptive Challenges: Gradually introduce activities that challenge interoceptive awareness, such as eating spicy foods, engaging in physical activities, or meditating.

Visit the OT ToolboxWhat You Need to Know about Interoception


Interoception is often referred to as the “hidden sense,” and this hidden sense helps us understand  body signals, like hunger, thirst, and emotional states. This self-awareness fosters a sense of well-being and it can help us communicate needs more effectively. By honing interoceptive skills, we can help recognize and manage internal messages, leading to greater self awareness and self regulation. 


Crawling – An Important Milestone in Human Brain Development

Parents of autistic children often share that their child did not crawl, and this factor is commonly underestimated. Those who have little ones who seem to simply sprout from scooting to standing to walking (even delayed) may feel as if the child has made great strides, but it’s important to recognize that crawling helps the brain develop. While scooting is absolutely adorable, crawling affects the brain in different ways. 

Baby in a scooting position

Scooting is fine but encourage crawling, too

Crawling as a Foundation for Cognitive and Motor Skills

Crawling plays a vital role in the early stages of human brain development, laying the foundation for various cognitive and motor skills. As infants begin to crawl, they engage in a complex process of sensory exploration and integration. This physical activity enhances the brain’s ability to create neural connections, facilitating the development of spatial awareness, hand-eye coordination, and proprioceptive skills.

Crawling also fosters the growth of the corpus callosum, a bundle of nerve fibers that connects the two brain hemispheres, promoting communication and information exchange between brain regions. The symmetrical and rhythmic movements involved in crawling have been shown to contribute significantly to the development of a well-connected and efficient brain architecture.

Studies on Crawling and Early Brain Development

Numerous studies have delved into the significance of crawling in early brain development. Research conducted by Karen Pape, a pediatric neurologist, highlights the essential role of crawling in forging neural connections and its influence on overall cognitive and motor development. A study published in the Journal of Neuroscience reveals that crawling babies exhibit enhanced spatial memory and a greater ability to perform tasks that require coordinated movement. Additionally, Neuroscientists such as Dr. John Ratey have explored how physical activities like crawling contribute to the release of brain-derived neurotrophic factor (BDNF), a protein essential for neuroplasticity and cognitive growth.

Encourage Crawling

Encouraging crawling in infants and providing them with safe and supportive environments to explore their motor skills can have far-reaching implications for their cognitive development. As demonstrated by scientific research, crawling sets the stage for improved brain connectivity, essential motor skills, and spatial awareness. And understanding the importance of crawling can guide parents, caregivers, and educators in fostering a child’s early development and providing them with a strong foundation for future learning and overall brain health.

Activities that Mimic Crawling

Activities that mimic crawling can help infants develop their motor skills, coordination, and strengthen their muscles. While infants may not be crawling independently yet, these activities can encourage them to practice the movements and prepare them for the milestone. Here are some activities you can try:

  1. Tummy Time: Place your baby on their tummy on a soft and safe surface. This position encourages them to lift their head and chest off the ground, strengthening their neck, back, and shoulder muscles – essential for crawling.
  2. Baby Plank: While your baby is on their tummy, gently support their upper body by holding their arms. This will help them practice the plank-like position that they will use when crawling.
  3. Rolling Games: Help your baby roll from their tummy to their back and vice versa. This motion helps them build core strength and improves their ability to change positions.
  4. Crawling Tunnel: Create a soft and safe crawling tunnel using cushions or blankets. Lay your baby on their tummy at one end and encourage them to move through it using their hands and knees.
  5. Crawl-and-Reach: Place toys just out of your baby’s reach while they are on their tummy. Encourage them to move towards the toys by crawling or scooting.
  6. Parent-Assisted Crawling: Sit on the floor and position your baby on your legs facing you. Gently help them move forward by holding their hands and guiding them through the crawling motion.
  7. Mirror Play: Place a baby-safe mirror in front of your baby while they are on their tummy. Babies are often fascinated by their reflections and may try to reach out to the “other baby,” promoting movement.
  8. Carpet Slide: Place your baby on a soft carpet or mat and gently pull them across the floor, allowing them to experience the crawling motion without using their own muscles.
  9. Crawling Race: If you have friends with babies around the same age, organize a mini-crawling race. Line up the babies and encourage them to crawl towards a fun toy or their parents waiting at the other end.

Remember, each baby develops at their own pace, and it’s essential to create a safe and supportive environment for them to explore and practice these movements. Always supervise your baby during these activities, and if you have any concerns about their development, consult with a pediatrician or child development specialist.

Resources:

  1. Pape, K. E. (2008). The role of early general movement assessments as predictors of cerebral palsy. The Neurologist, 14(6), 331-340.
  2. Adolph, K. E., & Berger, S. E. (2006). Motor development. Handbook of child psychology, 2, 161-213.
  3. Lobo, M. A., & Galloway, J. C. (2013). Crawling and walking infants elicit different verbal responses from mothers. Developmental science, 16(6), 894-905.
  4. Ratey, J. J. (2008). Spark: The Revolutionary New Science of Exercise and the Brain. Little, Brown Spark.