Connect – Autism Connection of Pennsylvania

Astrid Arroyo smiling with brown eyes and dark hair

Families Share: The Things that Keep Us Home and The Things that Bring Us Out

Sensory-friendly, inclusive events have become increasingly popular, and in an effort to ensure that all – and we mean all – families feel safe and welcome, we reached out to Astrid Arroyo who often attends events with her son to find out what works for her family. We also spoke with people who choose to stay home to find out why.

The Things that Keep Families Home

Families who have children with complex needs often reach out to Autism Connection looking for resources and support. We noticed that many shy away from large scale sensory friendly events, so we started asking why. One parent shared sensory friendly events aren’t for her teenage son. “They may be inclusive once you’re inside, but really, we just can’t do it. Many people don’t understand the risk going into a busy city really is. Safety is a concern we have to take very seriously.”

Other families share similar barriers:

Transportation and parking – high stress levels in getting to venues. Parking alone can be overwhelming
Safety and accessibility – not only do we need to gain access to the venue, we have to make sure there’s a “place” for us. Families that have loved ones who bolt or run quickly have additional concerns.
Perceived judgement on our loved one’s behavior. Hosts need to be crystal clear that vocalization and movement are welcome and not considered disruptive.
Venues are too big – can we find welcoming venues on a smaller, quieter scale?
Inconvenient times – Great. There’s a sensory friendly hour at 9:00am on a Wednesday morning during school and work hours. Thanks.
Cost – many sensory friendly events are not affordable.

We have to ensure that venues are safe, that staff and volunteers are well trained, accepting and prepared, and that all behaviors are truly welcomed. Smaller, shorter activities may be more appropriate for some families, and not everyone is equipped for long outings. Also, hosts may consider that it can take hours for some families to prepare to leave the house, so scheduling an event in the morning simply won’t work them.

Astrid Shares: The Things that Bring Families Out

When you see Astrid Arroyo, you’re likely to see her son, Kai, active, in the community, and included. We asked her what works for her family.

“For me, the accessibility of the venue and parking are always the main concern. This is the reason I tend to attend events that are outdoors, or in a venue that has outdoor space, and their own parking, or close accessible parking spaces.

We make it work because Kai drives us to it. Kai doesn’t like to stay home at all. He likes to be out surrounded by people, specifically people that are not us. So, I look for as many events as I can that I know he will enjoy, and that I am able to leave him with a staff, or his brother. Sometimes we choose an event big enough that we can watch him from afar.”

Astrid on the Importance of Raising Awareness About Sensory Friendly Events

“Events are not fully communicated to all families that can benefit from them. Not everyone is on social media. Not everyone has the time to go through Facebook or Instagram trying to find events, only to find out the time has passed. Families are overwhelmed 24/7 with the caring of their child, family obligations, doctor appointments, schooling, therapies, work etc. So even with families having access to these events, they forget about them quickly. This is the reason I started my Parent Group to repeatedly post social events that Kai likes, but I fear may go away due to low attendance.

But I wish, honestly, that supports coordinators were made aware of social events and that they would help families with planning to attend them. This applies to adults with aging parents who may not have the energy and patience to take their loved ones to these events.

I would like to find some sort of solution for parents to know what is out there, because events are out there. And people who are willing to host events for our loved ones are out there as well. We just need to figure out what is really needed, how can we make things more accessible to all families, and how can we create more events that are all inclusive.”

Autism Connection thanks Astrid for her insight and for her passion in helping people enjoy life to the fullest. In response, we have created a survey to further identify barriers and to determine what we all can do to help. Whether you’re a parent, friend, autistic adult, professional or other caring person, please take a moment to share your ideas by completing our Sensory Friendly Events Survey or email [email protected].

Empowering Connections: Sophie’s Potluck, A Special Journey

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

Tell us a little about Sophie.

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

Sophie’s signature bow

What drove you to start Sophie’s Potluck?

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

Getting creative

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

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

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

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

What kind of activities do you offer?

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

Sophie’s Potluck Zoo Encounter

Are there opportunities to volunteer?

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

Are there opportunities to host events?

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

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

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

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

giving Tuesday and autism connection logos

Giving Tuesday 2023

The Meaning Behind Giving Tuesday

Giving Tuesday, (#GivingTuesday) began in 2012 in response to the commercialization of the holiday season. It is a powerful reminder that the true essence of the season is about giving. This global day of generosity encourages people to contribute to charitable organizations, volunteer their time, and lend a helping hand to others.

Autism Connection of Pennsylvania: A Lifeline and Hub for Families and Adults

Autism affects millions of families worldwide. Autism Connection of PA is a non-profit dedicated to supporting autistic people and their families in Pennsylvania. Founded in 1996, Autism Connection has been at the forefront of the autism community, offering support, information, and advocacy.

The Impact of Giving Tuesday: Autism Connection of PA’s Key Initiatives

Get Involved

As Giving Tuesday approaches, Autism Connection of Pennsylvania relies on the generosity of individuals, businesses, and communities to continue our vital work. Donations on this special day can make a significant difference in the lives of those affected by autism. Involvement doesn’t always translate into monetary donations. Sharing your experience, connecting with others, offering help, or simply spreading the word about our work can have a huge impact.

You Can Make a Difference

On Giving Tuesday, let’s rally support Autism Connection of Pennsylvania and the community we serve. By donating, volunteering, and spreading the word, we can contribute to a brighter and more inclusive future. Together, we can make a difference and embody the true spirit of the holiday season – the spirit of giving.

SNAP: Bridging Friendships by Lydia Wayman and Zachary Miller

What is SNAP?

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.

Lydia’s Perspective

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.

Photo of Lydia sitting outside in the sun smiling into the camera

Lydia Wayman

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!

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.

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

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

: 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.

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:

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.
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.
Designated quiet spaces: Create designated quiet spaces where volunteers can take a break if they feel overwhelmed or need some time to recharge.
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.
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.
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.
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.
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.
Regular breaks: Schedule regular breaks for all volunteers, ensuring they have time to rest and recharge as needed.
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.
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.
Encourage feedback: Create a culture that encourages open feedback from volunteers about their experiences and any additional support they may need.
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.
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.