Latest Blog Post – Page 7 – Autism Connection of Pennsylvania

Judge Jennifer McCrady in sensory room next to bubble tube

Family Division of the Allegheny County Courthouse Initiates Sensory-Friendly Areas

Autism Connection of Pennsylvania is thrilled to announce sensory-friendly areas in development at the Family Division of the Allegheny County Courthouse. We explored the facility with The Honorable Jennifer McCrady, the judge who initiated the project, who also took time to answer our questions about the importance of sensory-sensitive spaces.

Judge Jennifer McCrady stands in the Sensory Room in the Allegheny County Family Division Courthouse

Autism Connection: What prompted you to create the sensory-friendly areas?

Judge McCrady: The Family Division is a chaotic environment and can be very overwhelming for members of the community to navigate. The majority of the individuals entering the building have experienced a trauma and may have any number of disabilities. We, as a court, needed to do better to recognize that the physical space was not conducive to the population that we serve. After input from stakeholders, youth, and families, the court partnered with Carnegie Mellon Human Centered Design class to revamp the space and communication. As part of the recommendations from CMU, it was clear that the court needed to make improvements for individuals with disabilities. The sensory room provides a quiet and calm space for an individual in a rather chaotic environment.

Using Physical Space to Create a Sense of Wellbeing

Autism Connection: Is physical space important to a person’s sense of wellbeing?

Judge McCrady: Yes, physical space is very important to a person’s wellbeing. The need for a calm, quiet, and safe space may be critical to helping the individual to successfully navigate the process. As a court and through the many improvements implemented, we are striving to be transparent, promote trustworthiness, and provide the public with a sense of empowerment as they navigate a stressful and hectic environment.

Photo of sensory room with dim blue lights and images of parrots projected on wall next to a bubble tube machine

Photo of sensory room in the Family Division of the Allegheny County Courthouse

Autism Connection: What is the first step others can take in creating similar environments?

Judge McCrady: Start small by providing fidget toys to youth, improve signage in the facility, train system players and frontline court employees on how to interact with members of the public in a trauma-informed way. The first encounter with a court employee can set the tone for the rest of the experience. Build toward creating sensory spaces and sensory areas. Improve docket management systems so there is less downtime as well as reasonable expectations for waiting time. Provide quiet and cleaning waiting spaces with access to vending machines and wi-fi service.

Safe Family Resource Center and Wellness Clinic

Private room with comfortable large pillows, play area, and table with chairls

Safe Family Resource Center: Confidential areas for victims of abuse. Self-contained, private, play space for children and youth with separate waiting and check-in areas for plaintiffs and defendants

Wellness Clinic:
Easy access in the Children’s Room staffed by Children’s Hospital professionals, and available for all children waiting for a hearing

Creating the Conditions for Sensory-Friendly, Trauma-Informed Spaces

Judge McCrady anticipates factors that can add to stress when visiting the courthouse. The project addresses these issues by creating safe spaces, using technology, and clear signage throughout the building. Visitors know where they need to be, and when. Details like charging stations Wi-Fi access can alleviate common concerns. The sensory room serves as a retreat where visitors have control of their surroundings.

Seating with light controls in sensory room

Comfortable seating with light and sound control

: Sensory-Friendly fidget toys available in every courtroom with many refills accessible by contacting Judge McCrady’s staff

: Outdoor retreat

: Outdoor playground

Autism Connection: Do you see this work becoming standard practice?

Judge McCrady: We found that there are many foundations and funders who are interested in this type of project and willing to help offset costs. If not for the many foundations that we worked with, we would not have been able to accomplish this project. Our hope is that court systems recognize the impact that trauma can have on an individual, and how important it is for our public court spaces to provide the appropriate and necessary trauma-informed accommodations for those with disabilities. It is an attainable goal.

Cover of Behavioral Health Commission Special Report

Behavioral Health Commission Special Report 2022

We are powered by an amazing board of trustees who actively engage in the work we need to in order to be a lifeline for families and adults, which is our mission. One of our unsung heroes is the Hon. William F. Ward (Bill) who serves on the Pennsylvania Commission on Crime and Delinquency (PCCD). As PCCD’s representative, Bill was key in creating funding opportunities in this Behavioral Health Commission Special Report. Follow the link below to read the full report.

Behavioral-Health-Commission-Report

Act 54 Areas of Focus (page 3)

Delivery of services using telemedicine
Behavioral health rates, network adequacy, and mental health payment parity
Workforce development and retention
Expansion of certified peer support specialist services and peer-run services
Development and provision of crisis services
Integration of behavioral health and substance use disorder treatment
Cultural competencies when providing behavioral health care
Impact of social determinants of health on behavioral health
Intersection of behavioral health and the criminal justice system
Establishment of an integrated care model that can deliver timely psychiatric care in a primary care setting

On page 7, the Commission recommends that we “develop and expand upon pre-arrest diversion programs that connect people with resources in a time of crisis, including individuals with intellectual disabilities and with autism spectrum disorder.”

Bill Ward took a few moments to answer some clarifying questions about the recommendations:

Autism Connection: What does “pre-arrest” actually mean?

Bill Ward: There are two different types of arrests. There is a custodial arrest, which is when a person is detained, is not free to leave the scene, placed in handcuffs, and removed to the local police department. (There are also non-custodial arrests, such as when a person is given a citation or ticket for a summary offense but is allowed to leave the scene without being processed at the local police department.) The concept of “pre-arrest” is focused upon those encounters or incidents where the police have the discretion to not detain and charge a person, but instead would “divert” them from being criminally charged. In my mind, “pre-arrest” is too narrow a restriction. More often, the police will detain and charge a person. Even so, much good work can be done to divert the offender after the arrest but prior to the Preliminary Hearing, usually set for 10 days later.

Autism Connection: Can you give us a brief description of the co-responder model? Is there a good resource for this model?

Bill Ward: One definition is: “A model for crisis response that pairs trained police officers with mental health professionals to respond to incidents involving individuals experiencing behavioral health crises.” Here’s a link to an article discussing the co-responder model:

Responding to Individuals in Behavioral Health Crisis Via Co-Responder Models

The BHC Report recommends that $5 million be dedicated to counties to develop or expand co-responder models, and to train first responders in crisis intervention.

Autism Connection: Anything you’d like to add?

Bill Ward: Yes. While $23.5 million is recommended to improve the criminal justice and public safety systems, $5 million (of the $23.5 million) will be to develop and expand upon pre-arrest diversion programs that connect people with resources in a time of crisis. The Behavioral Health Commission was receptive to put in that such funding expressly include “individuals with Intellectual Disabilities and with Autism Spectrum Disorder.”

Autism Connection of Pennsylvania recognizes the tireless dedication our Board of Trustees demonstrates. When you see something that speaks to your need, know that our awesome board has had their fingerprints on that – for our literal minded readers, this means they have inspired, worked on, or supported that activity in a meaningful way.

Final runner posing with four support runners in the party group

Gingerbread Man Running Company’s Labor Day Run for Autism Connection

We met up with some friends from the Gingerbread Man Running Company, who so generously donate proceeds from their annual half marathon to support you, the autism community in PA.

Distance events – the rolling, swimming, bike, or running kinds – and autism may have more in common than you might imagine. They require practice, repetition, a slow building of endurance and technique to accomplish things over time. Sometimes we fall, get a sprain, strain, become overheated or freezing cold. We can be out on a course when suddenly it starts lightning – and we need to tap into adrenaline and get to shelter as fast as possible. Sometimes we misjudge the depth of a puddle, catch a wave in our face, or slip on painted lines or ice we cannot see.

Photo of Anna, organizer announcing the beginning of the race with man in gingerbread costume excitedly waving his arms behind her

The race begins with Gingerbread Man’s support

Back to Labor Day 2022 – we turned out before dawn to see what we as volunteers needed to do, set up camp at the start/finish line, chatted up the Gingerbread Man himself along with his coworkers, and got ready to greet and cheer runners in their various distance races. At around 90 minutes in, we got ready to hand out medals to finishers, and counted how many people were left on the course when we were down to about ten. The bike guide finally rode up and let us know “there’s the party group and one person left.” We got the right number of water bottles and a medal ready to hand out to them. I wondered what “the party group” was – maybe some new kind of birthday tradition?

What we didn’t know is that the “party” was a group from Victory Multisport who came out to the race just to run the Half with the intent of supporting the last person running. They joined him along the way, and got to know his story. They just kept him going.

That’s it.

No major advice, no drama, no big deal was made, but by providing companionship, encouragement, and listening to his personal motivations and life experience, they got him over the finish line in fine form.

Photo of a smiling man wearing a white hat on a bicycle

The Bike Guy

Lots of people live with disability and grind it out, one step or one roll at a time, like the half marathoner. They do this if they are the person disabled by society’s barriers, or if they are a loved one trying to help out, possibly with the majority of care responsibilities. Like a distance athlete, they may have coaches or observers yelling advice, saying things like “You Got This!” or “God knew what he was doing…” and other things which may or may not be helpful at times of worry, stress, or downright despair when we feel like quitting.

Distance athletes sometimes think “I can’t do this anymore – how can I slow down, pace myself, or just quietly stop – will anyone see me? Judge me? Will I judge myself? Am I a quitter?” Often, they just put mind over matter and make strides to move past that next pebble, landmark, or tree they see ahead. And they get where they are going, experiencing some success, often with pain or exhaustion as their main companions.

There’s nothing heroic about living a disability life. It is what it is – not a choice, not a game, not an action movie, but a fact of life. There are certainly no medals being handed out. If we are in more of a spectator role, how can we provide water, practical encouragement, and physical or emotional support to those who are grinding it out?

Using the distance athlete metaphor – some want to be left alone to focus, some look up and smile when there are cheers, everyone needs the water, and lots of people need nutrition without even realizing how low their resources have gotten.

The “party group” was super cool to show up and support a complete stranger. If you find yourself in a support role, think about the value of doing concrete things like dropping off a lasagna, or helping with yard, shopping, or household chores. The last runner stuck it out and finished with confidence and style, accepting the help that was offered and made it easier.

Successfully Determined Runner

If you have a disability, or are a caregiver with needs, are you able to accept support that’s offered and to be specific about telling people what you need? Maybe you have done this and been let down; maybe it worked and it got you closer to a goal you needed to reach. Or maybe, you helped someone else cross their own finish line when you reached out for help.

Renaissance style painting of a cat putting something in a jewelry box. The cat is wearing a peach toga sitting sideways and peering into the golden box.

The Most Important Thing

This is really important is usually that last passing thought I remember about the very important thing I was holding before my memory goes stark white. The phenomenon of blanking out after placing an important item (amusement park tickets in the upcoming scenario) isn’t uncommon. I mean, they even make memes about it.

painting of a cat putting something in a jewelry box with text Me: "I'm just going to tuck this away so I don't lose it." Narrator: "she would never see it again."

Me: I’ll just tuck this away so I don’t lose it.
Narrator: She would never find it again.

So when Autism Connection received an email from a parent in the aftermath of absentmindedness, we completely understood.

Parent:

“We were an hour into our drive to Idlewild when I realized I left the tickets at home. Major mom fail. Any chance there are etickets on file?”

Autism Connection:

“Hi ____________,

They’re print only but show them the receipt in this email and let them know what happened. I can relate to this 100 percent because it’s something I’ve done countless times. I’ll give Idlewild a call in the meantime. Also, they can call me if you run into any issues trying to get in.

I’ll also try to find the numbers on your tickets, too.”

***

We called Idlewild and got a disappointing response at first—They need barcodes, not ticket numbers or receipts. The barcode is the ticket in. Very important. The Idlewild employee was patient in listening to me plead our case, and we tossed solutions at the problem, including having the family email the barcodes after they return home. We were left with “I’m not sure what we can do. I’ll talk to the front office, but we’re really busy.”

We left Autism Connection’s contact information in hopes for a quick call back. In the meantime, we reached out to the family rapidly approaching Idlewild.

Autism Connection:

“Idlewild said they need the barcodes, so they don’t think they can do anything on their end. I’m waiting for her to call me back. Sorry about the delay. She said the park is very busy right now. Hoping to hear back asap.

If you have them scanned on your phone, they can get the barcodes. If not, we’re hoping they make an exception today.”

***

We didn’t get a call back from Idlewild, but we did get an email.

Parent:

“Thank you!

So many different things to stress about…headphones, snacks, water…that it’s easy for things slip my mind. (Many things) added to my distractions…

…They did let us in, and the exit pass to help with the lines was also a lifesaver.

We had a great day and a successful family outing minus my mom fail.

Thank you for the discounted tickets and making a call. Certainly, give them a shout out for being so flexible and understanding.”

So colossal Thank You, Idlewild!

***

Happy ending, yes, but one aspect of the situation, a phrase, continues to gnaw on my thoughts.

“We had a great day and a successful family outing minus my mom fail.”

To the Parent from Autism Connection:

You didn’t fail. You had a human moment; a completely understandable human moment, and you had the presence of mind to reach out to people who truly want to help.

That is the most important thing.

Photo of Toy Story characters facing away from the camera looking toward a young boy with a Captain America backpack on in the background waiting for the school bus

Ways To Decrease Back-to-School Anxiety

By Sally Dean, M.S., BCBA, LBS

Many children experience anxiety when it is time to go back to school. For kids with an autism spectrum disorder this can be especially true. Families can make this transition easier by doing a few simple things to decrease the worries and fears associated with the return to school.

Parents and caregivers can reduce a child’s “back to school” anxiety by using the following techniques:

Mark on the family calendar when the first day of school will be so the child is aware of the upcoming change.
Begin to structure the day so that it is similar to the child’s school day. No staying up late or sleeping in.
Have the child engage in meaningful activities that relate to their favorite academic subjects instead of watching television or playing video games.
Plan a visit to the child’s school. This is a wonderful way for the child to see their classroom, meet their teachers, and even get an idea of what their schedule will look like when classes begin.
Talk about positive things associated with school such as learning innovative ideas, seeing peers, and creating new friendships.
Practice with children reciprocal conversation skills so they can feel confident talking to classmates they have not seen in several months.
Point out to children who worry about changes all the things that are still the same in their life, from the smallest to the biggest detail. This technique can be really helpful in reducing anxiety.
Plan a “back to school “celebration by having a special dinner or by making a favorite dessert. This is wonderful “pairing” approach to change a child’s attitude from fear and worry to one of positive expectations and excitement for the coming school year.

Using these strategies is likely to make the process of returning to school a much more positive experience that can be enjoyed by all. For more information, please contact us at [email protected]

Sally Dean, Dean Behavioral Consulting, LLC

colorful floating bubble with reflections of a landscape trees and water inside

Circle of Life

Recently we were reminded of how small the world can be, in a good way. A lovely family decided to choose us as an honorarium beneficiary at the passing of their very successful, graceful, and beloved father. We gratefully received contributions from friends and family for several weeks. More recently, one friend of the family sent a check to the man’s son, who then mailed it to us. The family noticed an astounding coincidence – our business address is the same as the original business address of their dad who started an extremely successful, nationwide medical testing business here when the business was in its infancy.

We chose our updated name many years ago based on input from autistic people who told us to call us “what we are” – enabling people to readily find us in online searches. Our logo is circular for many reasons – we wanted to paint a picture of an embrace, an inclusive and diverse system, with various pieces moving in and out as life with autism is complex, changing, and cycles across the years. Also, did you know, the eye completes a circuit as the nerve cells “talk to each other,” filling in the blanks most easily when a picture is presented in a fluid and circular shape? This is because of visual principles called “continuation” and “closure.” Our brand and logo says a lot about who we want to be for the autism community for decades to come.

Autism Connection Logo

Somehow it felt perfectly right to hear from this amazing family who has followed our news, information, and events for many years, telling us how excited they were to find out the roots of their dad’s very vital and important testing business were in our new office location. The concept of “what goes around comes around,” the idea of karma, a spiritual connection – or pure coincidence – are all possibilities, depending on what you believe. We are extremely grateful, whatever the reason, and chill bumps still raise on our arms when we tell this uplifting tale, perhaps needing to spread some positivity in the face of difficulties we all face.

How do we give thanks to the spirit or the persona of someone who has passed, both for his important contributions to medicine, and for leaving a legacy that has touched us all by supporting our mission? That question is impossible to answer. So let’s just thank you for reading, and for considering the mystery of how someone you likely never met is helping meet some of your autism needs now and in the future.

~Luciana M. Randall

Afraid to Drive: Look to the Helpers

My daughter, 17 years old and autistic, was crying inconsolably last night. It’s one of the most difficult things for a parent to experience, especially when the reason for the upset isn’t readily apparent.

“What happened?” I asked.

Tear flooded eyes locked just past my gaze. “I’m afraid to drive.”

And I knew what she meant.

“Me too,” I said. “But I know that there’s people who can help.”

The Helpers

Times of despair such as we as a nation are experiencing after multiple mass shootings, evolve into a collective grief that can’t readily be put into words, if ever. We are grieving, and coping with grief can be aided by, as Mr. Rogers said, looking to the helpers.

When we think of crisis, we often think of first responders, those on the scenes during tragic situations. The helpers. But help can come in many forms. Autism Connection received a note from a volunteer from the 2022 Pittsburgh Marathon about their experience. When I asked if I could use this piece, they said, “It seems so insignificant considering the magnitude of current events.”

But it is significant.

A Message from a Quiet Helper

“I’ve always thought the Marathon was a real pain in the ass, mostly because of the inconvenience it sometimes caused me. Like being stuck in traffic and rerouted around the city because the Marathon shuts down many streets for hours.

And so, when I recently found myself standing on Carson Street with a group of volunteers from Autism Connection of Pennsylvania, handing out cups of water to runners in this year’s race, I was doing something that was…well, weird for me: supporting—voluntarily! —an event that I really didn’t like. Plus, it was pouring out. And very early in the morning. I remember thinking to myself, ‘This is going to be a very, very long day…’

Turns out it was a great day, and I experienced several moments of true gratitude. As I watched the thousands of runners pass by—some running effortlessly, many others clearly struggling—my feelings about the Marathon began to change.

There were a LOT of runners, with different body types and different abilities. Of course, there were those at the head of the pack and they seemed to fly by. But most of them were just like the rest of us—in the middle of the pack—struggling through the challenges of their day.

These were all people trying to achieve a goal that they had set. Not all of them would, but they were trying, in the rain, just like me. And maybe, with a word of encouragement and a cup of water, I could help them reach that goal.

And any inconvenience the Marathon may have caused me in the past? Please. Compared to many people, my struggles are very minimal and I take so much for granted.

So, thank you Pittsburgh Marathon. Thank you for giving me an opportunity to get outside myself. And maybe help make somebody’s journey a little easier.

With a cup of water!

Imagine that.”

Afraid to Drive

My daughter’s voice, her way of communicating her grief, came in unexpected ways. But she was able to put into words—her own words—what many of us are feeling. We may be afraid to drive, but we keep driving forward.

A Note of Thanks

Autism Connection of Pennsylvania, a lifeline and hub for the autistic community, is deeply grateful to the helpers, the first responders, and the ones who quietly move the world into a more peaceful, loving place of acceptance.