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Starting and Strengthening a Self Advocacy Group: SATIN

Interested in starting a Self-Advocacy group? Join SAU1 to learn how you can start or strengthen your support group! Self-Advocacy is about speaking up for the life that you want.

How to Join

For video and audio by computer or smartphone, get the passcode from Rita anytime before the event!
Call 724 588 2378 or Email [email protected]

The day of the event, go online at sau1.me/zoom then enter the passcode or join right from SAU1’s events calendar at sau1.me/events and enter the passcode.

For just audio from any phone: dial 646 876 9923, then meeting ID: 223 344 5555 ##

All events are scheduled for Eastern Time and close captioned for those using vide a a

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All About Relationships: SAPNA

Join SAU1 to talk all about relationships. They will go over the different kinds of relationships and how people make them. Learn what healthy and unhealthy relationships look like, what abuse is, and what to do about abuse.

How to Join

For video and audio by computer or smartphone, get the passcode from Rita anytime before the event!
Call 724 588 2378 or Email [email protected]

The day of the event, go online at sau1.me/zoom then enter the passcode or join right from SAU1’s events calendar at sau1.me/events and enter the passcode.

For just audio from any phone: dial 646 876 9923, then meeting ID: 223 344 5555 ##

All events are scheduled for Eastern Time and close captioned for those using video.

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Power Talk with PA Office of Developmental Programs (ODP): SAPNA

Do you have questions about or issues with the supports and services for people with intellectual disabilities and or autism (ID/A) in PA? Join SAU1 for their monthly chat with staff from the PA Office of Developmental Programs, the government office that oversees and funds those supports and services.

People with ID/A in PA can speak up with ODP staff, and others are welcome to listen and learn.

How to Join

For video and audio by computer or smartphone, get the passcode from Rita anytime before the event!
Call 724 588 2378 or Email [email protected]

The day of the event, go online at sau1.me/zoom then enter the passcode or join right from SAU1’s events calendar at sau1.me/events and enter the passcode.

For just audio from any phone: dial 646 876 9923, then meeting ID: 223 344 5555 ##

All events are scheduled for Eastern Time and close captioned for those using video.

peaches cut up into a bowl of cream

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.

Tammi and Tanaya standing in front of the Community Food Bank sign

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

 

Image of a person wearing a volunteer shirt holding out a globe toward the camera

Autism, Hidden Disabilities and Volunteering

Running an organization that accommodates volunteers with autism or hidden disabilities requires understanding, empathy, and flexibility. Here are some tips to create an inclusive and supportive environment for all volunteers:

  1. Educate all staff and volunteers: Provide training to all staff and volunteers about autism and hidden disabilities. This can help create awareness and promote understanding among team members.
  2. Flexible scheduling: Be open to flexible scheduling to accommodate volunteers’ needs. Some volunteers may thrive with consistent schedules, while others may prefer varied hours to avoid sensory overload.
  3. Designated quiet spaces: Create designated quiet spaces where volunteers can take a break if they feel overwhelmed or need some time to recharge.
  4. Clear communication: Use clear and concise communication, both in person and in written instructions. Avoid figurative language or ambiguous directions, as some people with autism may struggle with interpreting them.
  5. Visual aids: Use visual aids, such as charts, diagrams, or picture schedules, to help volunteers understand tasks and processes. Visual cues can be beneficial for those who have difficulty processing verbal information.
  6. Buddy system: Implement a buddy system pairing volunteers with autism or hidden disabilities with experienced and understanding volunteers. This can provide additional support and make the volunteering experience more enjoyable.
  7. Task preferences: Allow volunteers to express their preferences for specific tasks they feel comfortable doing. Tailoring assignments to individual strengths can increase motivation and confidence.
  8. Sensory considerations: Be mindful of the sensory environment. For example, dimming bright lights, minimizing loud noises, or providing noise-cancelling headphones can create a more comfortable atmosphere.
  9. Regular breaks: Schedule regular breaks for all volunteers, ensuring they have time to rest and recharge as needed.
  10. Positive reinforcement: Recognize and celebrate the efforts and contributions of all volunteers. Positive reinforcement can go a long way in boosting self-esteem and encouraging continued participation.
  11. Accommodate communication preferences: Some people with hidden disabilities may have specific communication preferences (e.g., email, text messages, or written notes). Be willing to accommodate these preferences to facilitate effective communication.
  12. Encourage feedback: Create a culture that encourages open feedback from volunteers about their experiences and any additional support they may need.
  13. Avoid sensory overload: Limit the number of simultaneous tasks or activities that volunteers are expected to handle. Overloading the senses can be challenging for individuals with autism or hidden disabilities.
  14. Patience and empathy: Above all, approach each volunteer with patience and empathy. Recognize that everyone has unique needs and challenges, and a supportive and understanding attitude can make a significant difference.

By implementing these tips, you can foster an inclusive and adjustable environment where all volunteers can contribute their skills and feel valued in an organization’s mission.

Background soapy bubbles with towels and soap in foreground

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.