“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 griefis 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?
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.
SNAP, officially known as the Spreading Neurodiversity Acceptance Project for Social Engagement, was conceived by Zachary A. Miller. This project was born out of a heartfelt mission: to establish an inclusive platform where neurodivergent and neurotypical individuals could stand together on equal ground, fostering a sense of unity and acceptance.
At its core, SNAP is all about community engagement through a diverse array of events and activities. They extend warm invitations to people of all backgrounds, embracing the rich tapestry of human experiences. From crafting a captivating mural that celebrates neurodiversity to organizing engaging egg hunts and immersive camp days, SNAP consistently delivers on its promise of inclusive joy.
Crucially, the magic of SNAP doesn’t stop at its events; it begins right at the heart of their organization. The dedicated leadership team, led by individuals like Lydia, plays a pivotal role in shaping the project’s vision and executing its mission. Lydia exemplifies the spirit of SNAP, where inclusivity, understanding, and creativity intersect.
I’m an autistic adult who has spent my whole life in the Pittsburgh area. I have been involved in autism advocacy work since 2009, speaking at conferences, writing for a wide variety of publications, and working with organizations to develop courses, training programs and other resources. I’ve made incredible, lifelong friends through this work. But none of them live close enough to see in person more than once or twice a year at best. As involved as I am with the autism/autistic community, I still lack many local connections and social opportunities.
I heard about SNAP through an ad in the Autism Connection weekly newsletter in early 2023. It was about painting a mural celebrating neurodiversity that would hang in Benedum Hall. I love all kinds of arts and crafts and creative expression, so it sounded like something I’d enjoy. But I was nervous — I didn’t know who would be there or where Benedum Hall was, and I’ve never painted in any formal capacity. I wouldn’t have pursued the opportunity if my mom hadn’t also seen the ad and nudged me. I reached out to Zach by email to ask some questions that made me feel less anxious, as it helps if I know what to expect.
He responded quickly and with his typical friendly tone that makes everyone feel welcome and accepted. Come to a SNAP event and meet him, and you’ll see exactly what I mean!
We worked on the mural over several weekends, and I loved every minute of it. The artist who led us was a perfect fit for the project. The group had a wide range of ages and support needs, and she gave everyone jobs to do and presumed competence while still providing instruction and individual support. I liked that we were all helping and not just being handed the fun parts. It made it a true group effort, and the final product looks incredible.
After the mural, Zach asked if I wanted to join the SNAP leadership team. I readily accepted his offer and have served in the role of an autistic co-liaison since last spring, attending SNAP leadership meetings and help to plan and run events.
What Makes SNAP Distinct?
There are a few things that make SNAP different – why it’s a group I want to be a part of. A big reason for me is the inclusive nature of everything we do. Our events are designed to be as inclusive as possible, and we invite all ages, parents and siblings included. Everyone just gets treated like an individual. I’ve connected with all sorts of people at our events, and despite the leadership team being half of my age, they are fantastic people to work with and have fun with.
I’ve tried to make local connections with the disability community through activity-based groups in the past, but often, I felt forced to choose a side – either I had to be a participant with a disability, or I could be an organizer. Because I get overwhelmed easily, participating in groups can be hard, so I often prefer to help out. I think part of it is just that I know what’s going on, but I also have some unique skills to offer. But choosing to get involved as an organizer usually meant working with a team of people who aren’t used to making accommodations or allowing for support needs. Also, it meant not getting to enjoy the fun parts of the event.
With SNAP, I don’t have to explain what I can and can’t do, why I do or don’t need something. I don’t have to choose a side – I can just be myself, use my skills to help others, and have fun.
Join the fun!
Do you want to be a part of the fun? Many of our events are free to everyone! For more information throughout the year, sign up for our email list at the link HERE. We hope to see you in the future!
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
Proloquo2gohas 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.
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 theTaC(training and consultation) Team.
You can find your Intermediate Unit by visiting thePA 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
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.
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.
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.
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.
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.
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.
Volunteering provides opportunities to give back to our communities, and it helps us to feel involved with those in our communities. However, how do you know which volunteer opportunities work best for you? This question can pose significant difficulty for some individuals with disabilities as organizations may not feel equipped to work with people with special needs in a volunteer capacity. However, Aktion Club creates a safe space with opportunities for service where people with disabilities make the decisions and lead the club.
Taking leadership roles, making decisions, building autonomy
Three Rivers Community Care has been working with the Kiwanis Club of Sheraden to start an Aktion Club for anyone who is interested. This blog post will provide some answers to some Frequently Asked Questions about the club and we also hope that you’ll join us for an information session about Aktion Club on August 22 at 7 pm at the 3RCC Community Center in Carnegie.
Aktion Club is a service leadership program through Kiwanis International. It is the ONLY service organization of its kind in the world. Our club will be sponsored/supported by the Kiwanis Club of Sheraden. Aktion Club provides adults with disabilities the opportunity to participate in and choose service projects/volunteer projects with their peers/other group members.
Who runs Aktion Club?
Aktion Club will be supported by a member of the Kiwanis Club of Sheraden and a staff member of 3RCC. However, members will make up the leadership roles including president, vice president, secretary, treasurer, etc. of the club. Members will also make all decisions regarding club projects and activities.
Do members have to have a support person attend meetings with them?
This depends on the individual, requirements of their Individual Service Plan (ISP), and their comfort level in community situations. While a site facilitator and Kiwanis representative will always be present, each member and their caregivers should consider what is best for them.
When/how often/where will meetings be held?
Meetings are held monthly and will take place at the3RCC Community Centerin Carnegie, PA. Dates and times will be determined once we have enough members for the charter and will be based completely around their availability. We hope to have our first meeting in September/October.
Connecting with others through shared interests
What kind of service projects/volunteer projects will members participate in?
Members will decide what service projects and volunteer activitiesthey wish to participate in. They can range from making cards for veterans at the VA hospital, to food drives, to volunteering time at the Salvation Army or cleaning up litter in our communities. The possibilities are endless and the site facilitator and Kiwanis representative will work to ensure that all members interested in participating have the opportunity.
Is there a cost to participate?
There is no fee unless the members decide to charge a membership dues that would be used to help cover costs for materials or for fun activities for the club such as a summer ice cream party or a holiday party in December.
What are the benefits of Aktion Club membership?
Aktion Club members achieve a wealth of benefits including leadership and decision making opportunities. Members run the club and vote for president, vice president, and other leadership roles among their peers. Through service projects, volunteer projects, and club meetings members gain valuable social and community interactions to help increase their feelings of confidence in the community and feelings of self worth.
We hope this answers some of your questions about Aktion Club and that you consider joining us on August 22 at 7 pm to learn even more.
If you want to join Aktion Club you can email your information toMolly.You can learn more about Aktion Clubhere .
Years ago, my autistic daughter participated in what they called a special needs sporting event. I was quietly cheering her on, and another parent asked, “What is she doing here? Helping?” I shook my head and explained that she, too, was playing as a child with a disability.
“What’s wrong with her?”
“Nothing is wrong with her. She just has autism.”
The other parent’s eyes glazed over as she remarked, “Not the real autism. She has the ‘peaches and cream’ autism.”
I gave no response.
This brief, somewhat painful interaction has stuck with me for more than a decade. First, the image of peaches and cream as it relates to levels of perceived heightened ability makes no sense. Second, the inner workings of the mind and body are generally difficult to observe because they are not overt. So those with the perceived simple “peaches and cream” autism seem to have no place. They are too visibly able to fit in with those who have overt disabilities, and too invisibly disabled to seamlessly connect with nondisabled peers.
Where do we land?
Unpacking the Peaches
Over the years, I’ve ruminated on the peaches and cream autism statement, and I have repeated the nonsensical phrase many times. Sometimes in an effort to try to figure it out; sometimes in an effort to gauge other’s understanding. Results were mixed.
My younger, non-autistic daughter, much like me, was trying to unpack the concept.
And she did, in a way that finally made sense. She being a mere 15 years old, made the revelation extraordinary.
“Maybe you have the peach fuzz autism too, Mom.”
“Peach fuzz?” I laughed. “It’s the ‘peaches and cream’ autism. And you are probably right.”
“Oh! I thought you were saying peach fuzz because it’s light and soft and hard to see.”
Light and soft and hard to see
The way my mind works, I pictured a peach with its soft, fuzzy outer skin covering the fruit’s flesh. This led to an exploration and possible conclusion to the peaches and cream conundrum. And it makes sense in relation to autism and hidden differences.
The peach’s fuzzy exterior has puzzled experts, with no definitive explanation for its presence. However, one prevailing theory suggests that this textured coating serves as an additional safeguard for the delicate peel, which is susceptible to premature rot.
Peach fuzz exists even though it is difficult to detect, and it exists for good reason.
When I shared my findings with my daughters, the younger one sighed. “Peach fuzz on the face, I meant.”
Autism Connection has made a couple visits to the Greater Pittsburgh Community Food Bank to talk about hidden differences. Maria Montaro, Corporate and Community Engagement Manager, organized the sessions, and she surprised us with adjustments the organization has made over the past few months. Creating an inclusive, flexible environment has become a force that drives the Food Bank’s mission.
Training and Consultation
Maria recognizes the importance of getting multiple perspectives, and training is one of her top priorities. Autism Connection had the opportunity to include Tanaya Hairston, anAchieva Early Interventionemployee who has volunteered forsensory friendly performancesat the Pittsburgh Cultural Trust. Her insight as a volunteer working with people on the autism spectrum was invaluable. The group shared experiences, brainstormed solutions, and created a plan of action.
Tanaya Hairston smiling with excitement about sharing her experience
Adjusting the Environment for Inclusive Volunteer Opportunities
After the talk, Maria took time to take Autism Connection on a tour of the facility to show what ideas we shared were implemented. The results are stellar!
Clear signage and directions upon entering the building
Easy access to sensory aids
Visual cues that provide direction and set expectations
Noise canceling headphones
Comfortable, adjustable seating
Cushioned floor mats
Tasks broken down into one or two steps at a time
Breaks when needed
Easy access to sensory aids with signage
Each sensory aid is organized and clearly labeled
Signs are throughout the building, like this one with visual aids and instructions
Maria holds a seat mat for additional comfort
Floor mats add extra comfort and relief for tasks that require standing
Maria holds a pair of glasses above a bin of visual aids
Magnifying lenses for tasks that require focus on small print
Maria holding noise reducing headphones
Understanding Universal Design
A big part of the discussion was about Universal Design. The primary focus for this approach is to create flexible spaces that can be adjusted according to individual needs. What works for one volunteer may not work for another, and sometimes needs of one conflict with the needs of another. The Greater Pittsburgh Community Food Bank recognizes that we can address each person’s needs by making adjustments catered to the individual.
Autism Connection of Pennsylvania thanks Maria and the Greater Pittsburgh Community Food Bank for demonstrating their dedication to creating inclusive spaces that can be adjusted to suit the needs of their volunteers. We can’t wait to see what developments they have in the future.