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

 

 



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. 


Aktion Club: Where Development has No Disability

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.

Three women posing for the camera. Two are kneeling beside a woman in a wheelchair

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.

Register online here.

What is Aktion Club?

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 the 3RCC Community Center in 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.

 

Three photos of people doing different interactive activities

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 activities they 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 to Molly. You can learn more about Aktion Club here .

–Molly Crawford

Interim Outreach Director

Three Rivers Community Care

 


The Peaches and Cream Autism

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.”

A large pile of peaches

Light and soft and hard to see

Peach Fuzz

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.”

We’re still looking into it.


Greater Pittsburgh Community Foodbank Creates Flexible Space for People with Autism and Hidden Differences

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, an Achieva Early Intervention employee who has volunteered for sensory friendly performances at 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 smiling into the camera holding a peace sign with her fingers

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
  • Adjustable lighting
  • Quiet spaces
  • Easy access to sensory aids
  • Visual cues that provide direction and set expectations
  • Magnifying lenses
  • Noise canceling headphones
  • Comfortable, adjustable seating
  • Cushioned floor mats
  • Tasks broken down into one or two steps at a time
  • Breaks when needed

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.

Find tips for creating similar environments: Autism, Hidden Differences and Volunteering

 


Autism Guide for Bathing and Showering

Helping an autistic adult who is struggling with bathing can be a gradual and patient process. Here are some strategies to provide support and encourage personal hygiene:

  1. Understand their sensory needs: Sensory sensitivities can make the bathing experience uncomfortable or overwhelming. Take note of any specific sensory triggers and try to minimize them. For example, they might prefer a certain water temperature or specific bathing products.
  2. Establish a consistent routine: Set up a daily or weekly bathing schedule to create predictability and structure. Routines help them know what to expect, and knowing what to expect can reduce anxiety. 
  3. Visual supports: Use visual schedules or step-by-step picture cards to help them through the bathing process. Visual aids can provide clear instructions and reduce anxiety about what comes next.
  4. Gradual exposure: If the person is anxious about bathing, start with short sessions and gradually increase the duration over time. Offer positive reinforcement and praise for each successful attempt.
  5. Accommodate preferences: If they dislike traditional bathing methods, explore alternatives like sponge baths, using a washcloth, or taking a shower with less water pressure.
  6. Incorporate special interests: Integrate their special interests or favorite activities into the bathing routine to make it more enjoyable. For example, if they love a specific toy or sensory item, allow them to bring it into the bath.
  7. Choice and control: Offer choices within the bathing process. Allow them to choose the soap or shampoo scent, the bathrobe they want to wear afterward, or the time of day they prefer to bathe.
  8. Use social stories: Create social stories or videos that depict the importance of personal hygiene and the benefits of bathing. Social stories can be an effective way to explain new or challenging concepts in a relatable manner.
  9. Create a sensory-friendly bathroom: Make the bathroom a comfortable and calming space. Use soft lighting, add sensory elements like scented candles or essential oils, and provide familiar and preferred towels and bath products.
  10. Modeling and participation: Show the individual that bathing is a regular part of daily life by modeling the behavior. Consider taking baths or showers together initially to provide support and encouragement.
  11. Offer rewards: Consider implementing a simple reward system for successful bathing attempts. This could be earning tokens for each bath, which can later be exchanged for preferred items or activities.
  12. Seek professional support: If the challenges persist, consult with professionals, such as occupational therapists, who specialize in working with individuals with autism. They can provide personalized strategies and support.

More guidance and videos available on Autism Self Care.


Remember, each person is unique, and what works for one may not work for another. Be patient, understanding, and flexible in your approach, and celebrate any progress, no matter how small. Building a trusting and supportive relationship is key to helping the autistic adult feel more comfortable with the bathing process.