About Autism – Page 2 – 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].

Showing Love through Multiple Connections

Love Is in the Air is more than just a one (American) hit wonder by John Paul Young. It’s also a sentiment spurred by the made-up holiday of Valentine’s Day. I’d like to take advantage of this sometimes over-commercialized day to seize the opportunity to show love for people in the autism community. And as you are reading this, that means you are part of the crowd we love!

Are you a past or present board member, founder, paid professional, community partner, or a generous volunteer who has supported the autism community via Autism Connection?
Could you be one of the seasoned folks who knew us as the original “ABOARD” – or Advisory Board on Autism and Related Disorders – who got this “party” started?
Are you one of our supportive friends at ACHIEVA, a foundation giver, an individual donor, someone from the corporate world who has decided to sponsor us, or a phenomenal community group who has fundraised for us?
Could you be a researcher friend, a compassionate judge, or a public servant we call on at all hours with questions or emergency situations needing attention?
Are you a family member or autistic friend who chooses us for support, or who works as our colleague? Or a marathon runner, or a personal friend or family member who supports our work?

Most likely you fall into many categories. Any “yes” answers means we love YOU!

Love Takes Many Forms

Is using an emotional word like love appropriate in a professional setting? I believe it is in the sense of agape, defined on dictionary.com here:

“agape

Original Greek: ἀγάπη (agápē)

Agape is often defined as unconditional, sacrificial love. Agape is the kind of love that is felt by a person willing to do anything for another, including sacrificing themselves, without expecting anything in return. Philosophically, agape has also been defined as the selfless love that a person feels for strangers and humanity as a whole.”

What Brings Our Thoughts to Love

Here’s why I’m thinking so hard about this now. Today we received our third request to cite a blog post – this one from Community Circles Restorative Justice Society (CCRJS) based in Ladysmith, British Columbia. Another was a request from Assets High School in Honolulu, Hawaii, and Cerebral Palsy Guidance in Syracuse, New York reached out to collaborate on bringing awareness of dual diagnosis of autism and cerebral palsy for a campaign in March (stay tuned).

This made me consider how we got here. And the logic chain goes like this: Tammi wrote the blog post cited today, found on our website that is funded by givers, the optimization of which was prioritized by our Strategic Plan originally written 12 years ago by board members (some of whom are family members or autistic people), shared by our community partners and friends online, maximizing our visibility so people in British Columbia could find, read, and use our words to benefit others we will never meet. Phew! It was not hard to make that list because I often reflect on our roots and the huge crowd that has the autism community’s “back”, and it is all true.

Love is in The Air

I’m going to close this because I really need to hit “stop” on John Paul Young who’s been playing on repeat as I write this, permanently etching these lyrics into my brain for the foreseeable future.

In the spirit of “sharing is caring”, here’s your earworm for today, with apologies to literal and visual thinkers for using that term. It’s okay if this is stuck in your head too – Here are those words for you to ponder.

Love Is In The AirEverywhere I look around (I look around…)Love Is In The AirEvery sight and every sound (and every sound…)

And I don’t know if I’m being foolishDon’t know if I’m being wiseBut it’s something that I must believe inAnd it’s there when I look in your eyes (your eyes…)

Love Is In The AirIn the whisper of the trees (whisper of the trees…)Love Is In The AirIn the thunder of the sea (thunder of the sea…)

And I don’t know if I’m just dreamingDon’t know if I feel saneBut it’s something that I must believe inAnd it’s there when you call out my name (call out my name…)

Love Is In The AirLove Is In The AirOh oh oh

Love Is In The AirIn the rising of the sun (of the sun…)Love Is In The AirWhen the day is nearly done (is nearly done…)

And I don’t know if you’re an illusionDon’t know if I see it trueBut you’re something that I must believe inAnd you’re there when I reach out for you (reach out for you…)

Love Is In The AirEverywhere I look around (I look around…)Love Is In The AirEvery sight and every sound (and every sound…)

And I don’t know if I’m being foolishDon’t know if I’m being wiseBut it’s something that I must believe inAnd it’s there when I look in your eyes (in your eyes…)

Love Is In The AirLove Is In The AirOh oh oh, oh oh oh, oh oh oh

Love Is In The AirLove Is In The AirLove Is In The AirLove Is In The AirOh Love Is In The AirOh Love Is In The Air

Black History Will Forever Be My History – By Joseph Smith, Autism Connection of PA Trustee

This month, we celebrate Black History. It is a time to remember the innovation and accomplishments of trailblazers in the United States. A lot of people are inquiring about why Black History Month is important. Here are some reasons from my point of view.

All of American history needs to be learned regardless of skin hue. There is too much division in this country. As a result, people of my hue are not getting recognition for the inventions and accomplishments they have made.
Studying Black History reminds us of the struggles of our ancestors so that we can better understand what we are going through and what they went through.
It opens us up to more issues that need to be discussed. We live in a critical age where we need to have uncomfortable conversations about race and disability.
We can make a difference by learning about race in our society. By learning Black History, we can better use Theory of Mind by being more sensitive to the needs of everyone.
The most important part of all is that Black History can’t be relegated to just one month. There are so many individuals breaking barriers every minute that need to be recognized.

Black History Month is canonical to American History. By studying Black History, we can obtain knowledge that can prevent us from repeating deleterious events. Together we can break barriers.

Joseph Smith
Autism Connection of PA Trustee; Giant Eagle employee, and Professional Photographer

fries and chicken nuggets with sauces on side

Four Quick Tips for Picky Eaters

People have all kinds of reasons for food aversions or avoidance. Sensory (like experiencing strong or “weird” tastes, loud noises that crunchy foods make when chewed, uncomfortable pressure on teeth and jaws when chewing), motor (slippery or soft foods may hard for a person to control in their mouth without accidentally gagging) or negative memories like choking or being at a sad event when eating a food, all may affect one’s “food future”.

Some people may also have obsessive compulsive disorders that dictate how, when, and how much they eat, or hidden mental and emotional rules dictating things like if foods are “allowed” to touch each other, be eaten “out of order” or that one must avoid eating an odd number of things (like grapes) vs. an even number. Best wishes to the family chef – or to you yourself – if food variety is limited by disabling conditions. But fear not, here are some ways which may help anyone eat a wider variety of foods.

1. Put favorite foods with all the food you are offering

Picky eaters may gravitate to certain foods, and this can lead to making special dishes just for them. Try putting their favorite foods as part of a selection of a variety of foods. Putting everything in the middle of the table creates a sense of similarity rather than sending the message, “Your food is different from our food”.

Real family experience: Michael’s daughter, a picky eater, always stuck to her favorite chicken nuggets. By placing them alongside a variety of dishes, he noticed she became more open to trying new things, feeling like her choices were part of the family feast.

2. Add flavor little by little

Choose a preferred food and add a tiny bit of flavor in the mix. For example, a person who loves plain pasta with no sauce might enjoy having the option to dip the pasta, or simply add a very small, almost undetectable amount of sauce into the pasta to give it a subtle hint of flavor. If the hint of flavor is tolerated, gradually add more over time.

Real family experience: Eva, who preferred plain pasta, discovered a love for subtle flavors when her mom introduced a small amount of sauce. Gradually, she started experimenting with different sauces, turning mealtime into a flavorful adventure.

3. Deconstruct complicate dishes

Serving a dish that has multiple ingredients can look and taste overwhelming. Try offering ingredients that they can choose and assemble as they like. For example, taco night might feature tortillas alone with a separate bowl of each filling. People could eat each item separately, or combined as they choose.

Real family experience: The Smith family found that deconstructing lasagna into separate components allowed their son, with sensory sensitivities, to enjoy the meal. He happily assembled his plate with the ingredients he liked, turning a potentially overwhelming dish into a customizable delight.

4. Add variety to familiar foods

Try favorite flavors or textures in different foods, and note how they are similar. “These are raisins. They’re soft, sweet and chewy just like the gummy candies you like.” Or “You love Goldfish crackers. Here are cheesy square crackers that can go with them.” You also might try using a favorite dip as a way to try new food “dippers”. Begin with their favorite food and dip, say carrots and ranch dressing, then add a new food, like one piece of celery, to allow a little more exploration.

Real family experience: Mark’s son, a fan of Goldfish crackers, was introduced to new flavors by pairing them with different-shaped cheesy crackers. The explanation, “These are like the ones you love,” made trying new snacks feel like a natural extension of their preferences.

By experimenting with these family-friendly tips, you can turn the dinner table into a joyous experience for everyone. Remember to include favorite foods alongside a variety of options, creating a sense of togetherness rather than emphasizing differences. Gradually introduce flavors to cater to individual preferences and consider deconstructing complex dishes for a more manageable experience. Adding variety to familiar foods and using favorite dips as a gateway to new tastes can further enhance the positive, inclusive atmosphere at the table. Celebrating each unique palate is the key to creating lasting memories and fostering a sense of togetherness during mealtime.

Charcoal drawing of a grief stricken man standing next to a washer and dryer

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

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!

children using an iPad for assistive technology in a classroom

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.

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

Achieva