Autism Relationships – Page 3 – Autism Connection of Pennsylvania

two empty coffee cups on a red background

Bereft of Coffee

While waiting for the coffee to finish brewing in the office kitchenette, my eyes fixated on the stream of coffee entering the carafe and the tranquil sounds it made in anticipation of the final surge of steam as the brewing finished. This concentrated focus drowned out a number of elements that flooded the surroundings, flickering lights, multiple distant voices, phones ringing, and the general energy of movement within the maze of cubicles.

During the reverie, I saw a peripheral figure approaching to my left, and a soft, clear voice flowed into my ears, “Good morning! How are you?” and at that moment, I straightened and turned my entire torso toward the person asking the question, stopping like a machine that produced speech. I heard my own voice say, “I am bereft of coffee.” And all memory of the moments following would never gel in my mind because I could only fixate on my social ineptitude.

Bereft of coffee. Who says that? Did you even make eye contact?

Bereft

Bereft is not a word used often in everyday conversation. It’s a complex, haunting word that comes from bereave, a term of loss and mourning that communicates that something is lacking.

Yes. I looked up the use of the word “bereft” over time. It really took a dip in the 1940s and I’ll probably try to find out why.

In the morning kitchenette interaction, the thing that was lacking was coffee, and the choice of the word bereft in this specific case seems a bit dramatic. The word may also communicate on some level that I really want to interact on your terms, but I just don’t know how. It takes a great deal of concentration and sometimes the words just pour out and I wish I could collect them and rearrange them into something, well, “normal.”

The coworker who kindly asked the question was likely to think, “Well, that was an unusual response,” and the moment would vanish along with the multiple mundane things that occur in a nondescript workday. But for me, this common office interaction became a source of shame that lingered for months. This wave of embarrassment was probably unnecessary but it is something that people on the autism spectrum face when they are aware of basic communication differences that can sometimes lead to misunderstanding.

Full Cup

When we have people who truly understand communication differences, we find that they often see these types of interactions insightful, and sometimes endearing. While lamenting to a trusted coworker about my perceived social awkwardness, she said how lovely it was that I was able to express such a deep love for coffee, and in turn, a deep appreciation for words. Bereft is a beautiful word that can express longing for acceptance, and even longing for something comforting, like a cup of coffee.

Identifying Autism in Adults

The autism spectrum is broad, varying features that are sometimes difficult to recognize on the surface. Some adults may have lived their lives without a full awareness that some of the barriers and struggles they have faced are a result of undiagnosed autism. Reports include those who have been stunned by the direct question, “When were you diagnosed with autism?” Other reports specify experiencing difficulty understanding social interactions, difficulty with tolerating textures, changes in routines, and being genuinely dumbfounded by other people’s seemingly insensitive perspectives and behavior. Those reporting range in ages from 20 to 64 years old.

At Autism Connection of PA, Chrisoula manages hundreds of calls, emails, and website contact entries each month. She offers suggestions to adults who want to identify the signs of adult autism, getting diagnosis, and finding support and resources.

-TLM

Identifying Signs of Autism in Adults

While autism is commonly associated with childhood, it is crucial to acknowledge that many people may remain undiagnosed until later in life. Some prevalent signs and characteristics that may indicate autism in adults include:

Social Communication Differences: Difficulty comprehending and utilizing nonverbal cues, challenges in sustaining conversations, and struggles with recognizing and expressing emotions
Sensory Sensitivities: Heightened sensitivity or aversion to specific sounds, sights, textures, tastes, or smells
Special Interests and Routines: Intense focus and extensive knowledge in particular areas of interest, accompanied by a preference for routines and consistency
Executive Functioning Challenges: Difficulties with organization, time management, planning, and flexible thinking
Social Interaction Difficulties: Feeling overwhelmed in social situations, experiencing difficulties in establishing and maintaining friendships, and struggling to grasp social nuances

Pursuing a Diagnosis

If you suspect that you may have autism or exhibit some of the aforementioned signs, it is important to seek a formal diagnosis. Here are the steps you can take:

Educate Yourself: Acquire knowledge about autism in adults and familiarize yourself with the diagnostic process. Learn about common traits and characteristics associated with autism. Weekly e-news covers a range of topics.
Consult Professionals: Reach out to healthcare providers, psychologists, or diagnosticians who specialize in assessing autism in adults. They can guide you through the evaluation process.
Diagnostic Assessment: The assessment typically involves interviews, questionnaires, and observations to evaluate your social, communication, and behavioral patterns. The goal is to gain a comprehensive understanding of your experiences and determine whether autism is an appropriate diagnosis.

Support and Resources

Following a diagnosis, people with autism can access various forms of support to enhance their well-being and quality of life. Here are some beneficial resources:

Therapy and Counseling: Engage in individual or group therapy sessions with professionals experienced in working with adults on the autism spectrum. Therapy can focus on developing social skills, regulating emotions, and addressing specific challenges.
Skill Development Programs: Seek out programs that offer training in areas such as executive functioning, communication, and social skills, tailored to the specific needs of adults with autism.
Support Groups and Communities: Connect with local or online support groups where you can meet others who share similar experiences. These groups provide opportunities to share insights, receive emotional support, and connect with others on a similar journey. We offer several support groups for you to join!

Recognizing signs of autism in adulthood, pursuing a diagnosis, and accessing support are crucial steps toward understanding oneself and navigating life with autism. By staying informed, seeking professional guidance, and utilizing appropriate resources, autistic people can embark on a path of self-acceptance, growth, and fulfillment. Remember, Autism Connection of Pennsylvania is here to support you every step of the way.

–Chrisoula Perdziola, Resource Specialist

[email protected]

Image of a head silhouette with colorful crumbled papers raising above it

You Can’t Accomplish Just Anything You Want

Thanks to our great support network we were able to do a quick turnaround and prevent the likely loss of a career for someone who recently reached out to us for help. We were so grateful for all the forces that combined and allowed us to be our mission of “a lifeline of support.”

M. had been “in love” with a young person they met over ten years ago. While they never had an in-person dating relationship, a heart was captured and imagination took over. Sending poems, emails, texts, flowers, candy, and more, can be lovely gestures when welcomed, but wound up being scary and threatening to the love interest who did not welcome them. Finally, a protective order was filed in an out of state court. The first order covered 24 hours, the second, two weeks, and three business days following our first call with the accused, the court would hear and see evidence to produce a two-year Protective Order which would have cost our new client their job.

Hearing someone so distraught, tearful, hopeless, and being baffled by this turn of events kicked us into high gear. This college educated professional was stuck in emotions and had no idea what to do, nor if they needed to appear in court despite simple court paperwork clearly stating they needed to attend in person. There was no plan, no lawyer, no defense strategy, and only three days plus a weekend to work with. Fortunately, this person immediately reached out to and signed up with both referrals we provided, one being a defense attorney licensed in the state of the proceedings, and the other, a therapist who provides services for those in the justice system. We owe a debt of gratitude to board trustee Tiffany Sizemore who provided the out of state referral, and to Shawn McGill who immediately took the call and offered his professional help.

The judge heard both sides of the case in great detail on the day of proceedings, taking autism into consideration but not focusing on it. And much to the surprise of most involved, including the defendant’s attorney, the judge did not place our client under a Protective Order because he did not hear criminal intent nor malice, and believed the testimony that they were moving on permanently and would never contact the plaintiff again.

We talked that night after it was all over, and I asked a question I have often thought about. “What rules did you follow that you learned growing up as a kid that may have led to trouble in this situation?” And right off the bat the answer was “Follow your heart. And if you work hard enough, you can achieve anything!”

Now, that last one is not true for any one of us! And while we routinely use phrases like these, they can lead some to overly apply them very literally and not know when to change course. Positivity is sometimes helpful but it can become toxic. So please consider the individual when you use encouraging words. We were lucky in timing and that we know the best network of helpers, but this was such a close brush with disaster that the client wanted us to teach with this story. In their own words spoken the night after things cleared up, “I just want to give presents to everybody who helped me. And I am a first grader in terms of dating – I was in love with a mirage! I ‘m definitely going to do the counseling too. But overall I want to tell this story and help make sure this never happens to anyone else, ever again!”

photo of a drawing of two children standing alongside a third child in a wheelchair. It's a child's sketch and it's lying on a table surrounded by colored pencils and markers.

Let the Children Lead Us and Teach Us

One day a week I take myself to the office, the rest of the week I work remotely. The fluorescent lights in the office are not kind, and it takes me an hour to de-escalate myself once I get home. Sensory overload is real and it is hard. I wasn’t always aware of my sensory needs, and I still struggle with coping, but my son taught me how to identify obstacles in the environment. They were always there, and sensory overload affected me, but I am a product of the 80’s and 90’s growing up, and we certainly didn’t talk about sensory needs. You just dealt with it, or didn’t, but regardless you did it quietly.

Fast forward to having a child who was diagnosed with autism.

As a parent of a child on the spectrum, I had a large learning curve and I needed to maneuver it quickly. One day he didn’t have autism, and the next he did. Now I know, autism was always a part of him, this is what I mean by learning curve. In the beginning, I was circumventing the curve by doing everything others told me I needed to do to “cure the autism”. The focus was on changing him, not on creating a space where he could thrive. If he wasn’t in therapy or working on targeted skills, we were wasting precious time to “fix” him. False. False. False.

Let me stop here and replace cure with cope and also say that speech, occupational, physical therapy, and skill building can happen in all the places all time. Children need space to be children and their adults need space to just be supportive adults. And while we’re replacing words in our vocabulary, let’s replace compliance with cooperation. But we can talk more about compliance vs cooperation in a future blog.

We have so much to learn from people, especially children. Once I began focusing on coping, rather than fixing, everything changed. When I learned to listen to what my son was communicating but wasn’t verbally saying, everything changed. My son changed my entire view moving forward and made me realize I needed to reflect inward. The space I was trying to create for him to thrive, I learned, I also wanted. I didn’t want to just “get through it” anymore.

Actively listening to my son smashed my rose colored glasses and showed me the beautiful world of diversity and inclusion. I learned how to identify and advocate for what I needed to be comfortable. I learned that asking questions and genuinely wanting to get to know about people and what is important to and for them, helps us all grow and create safe spaces. I learned that as I’ve shared how I feel or what I’ve experienced, many others say “me too!”, which creates a welcoming environment to share what is in their hearts and in their minds. I learned to meet people where they are. Even though I’m much older than my son, it’s been a life changing experience to learn together that neither of us needed fixing.

This is a reminder to let the children lead us and teach us.

E.R. Heffel

Woman facing camera holding a mirror that reflects her eyes back into the camera

Is That All You Got?

We learn a lot from individual histories and situations thanks to people trusting us with their personal stories and advocacy needs. Over the years, some situations have revealed that an additional medical or psychological diagnosis, or both (often a psych diagnosis is rooted in medical issues) may be the real culprits causing someone’s suffering. Autism is not the only difference a person can have, and we need to look closely at ourselves, and the people we care about. We also need to help others see folks for the complex and interesting beings that they truly are.

Imagine someone diagnosed with Type I, or juvenile diabetes, at age 12, and for the rest of their life all issues were attributed to that. Headaches? It’s the diabetes. Vision issues? It’s the diabetes. Fatigue and nausea? – you get the picture. And what if those symptoms were coming from treatable migraines but never prevented or resolved by regular migraine treatment? A person might – and many do – suffer for decades if they are only seen as having one issue as the cause of everything wrong, while something else is going on. They have more than “one thing” and need to be treated as such.

We support three unrelated people who each have experienced: job loss, eviction, academic punishment and expulsion, legal issues, getting lost during travel, and social problems. All three have an autism diagnosis, and all three had been in car accidents from four years to decades ago! Once we started to say, “This does not seem like your autism,” and started referring them to traumatic brain injury (TBI) evaluations and treatment programs, many of their emotional burdens fell away.

They felt the same feelings of being different and not being able to move forward that many undiagnosed autistic adults feel. The additional, correct diagnosis of traumatic brain injury has resulted in feelings of relief, being finally understood, and belonging to a new support community. Are they still autistic? Yes! Can they be helped by a couple of different specialists? Also, yes. Combined therapies are doing great things!

We are all many “things” at once. Lazy, hungry, and curious, a chef, Netflix watcher, and a bookworm, a housecleaner, gamer, and a guardian, even a cat AND a dog lover! We can also be autistic and hypoglycemic, nearsighted and have tinnitus, or have anxiety and joint issues. Each of us exists in combinations of gifts, needs, strengths, interests, and biological differences. So please consider another look at yourself or someone you care about.

If things are not getting better, or they are worsening, or something has been bothering you for a long time and you keep putting off a checkup — trust your instincts! Get and go to a doctor’s appointment. Contact us to talk things over — we know cross-disability professional friends, and can sometimes help with specialist medical referrals. Hopefully we can get you to a new “right place” to meet your needs. Let’s take a clear look at ourselves in this new year, together and with the tailored support each one of us deserves.

Photo of ballet dancers on a softly blue lit stage in mid dance of the Nutcracker

A Progression of Sensory-Friendly Performances in Pittsburgh, PA

Sensory-Friendly performances have become a relatively new tradition for many families in the Pittsburgh area. The venues offer a “relaxed” atmosphere that is calm and welcoming. The accessible performances emerged in 2013, and have continued to create lifelong memories for people with autism or sensory processing disorders ever since, and the Pittsburgh CLO has adopted the tradition with its sensory-friendly A Musical Christmas Carol.

Autism Connection spoke with Vanessa Braun from the Pittsburgh Cultural Trust and Lindsey Kaine from the Pittsburgh Ballet Theatre to learn the history of sensory-friendly performances in the Steel City, beginning with two groundbreaking features: The Lion King and The Nutcracker.

Autism Connection: How did the wonderful opportunity to bring sensory-friendly performances to Pittsburgh present itself?

Vanessa Braun: I first learned that the Theater Development Fund in New York City was making Broadway shows accessible to an audience on the spectrum through a piece on the national news. I went to work the next day and brought it up in a conversation with our Director and Assistant Director of Guest Services, telling them that this was happening in New York, and did they think that we could make a similar show happen in Pittsburgh. They then told me that The Lion King would be returning to Pittsburgh in 2013, and that they loved the idea and agreed with me that we were completely capable of bringing an autism-friendly or sensory friendly show to the Pittsburgh market.

“We started a trend and Pittsburgh, our region, has actually become a national leader in autism-friendly and sensory-friendly programming, which we’re pretty proud of and it’s impressive for a small city like ours.” -Vanessa Braun

Autism Connection: What did your research entail?

Vanessa Braun: Three representatives from the Cultural Trust traveled to the Kennedy Center’s (LEAD) conference and attended a session about their work conceiving of and executing their two shows with Disney, The Lion King, and Mary Poppins. We also met with the Theater Development team at the conference. They invited us to New York to see their second Lion King show in action.

After our fact-finding trip, we really got into the fine details of making this show happen. We secured the date with the tour, and it was to be the third week of a four-week run. It was vital for us to choose a Saturday to appeal to as many families as possible. We also stayed connected with our friends at the Ballet. Their first show would take place in December of 2013, and we worked together on some outreach, and of course, took the lead on training our front of house staff who would later work their show.

“Our sensory-friendly performances are a step toward making the excitement and beauty of a ballet performance barrier-free, accessible and welcoming to everyone in our Pittsburgh community.” Pittsburgh Ballet Theatre

Autism Connection: What kind of organizational commitment did each of your organizations invest in these shows?

Vanessa Braun and Lindsey Kaine: For us it was first financial, even with a group discount on the entire house, we wrote Disney a 200,000 check to buy out every seat. Why, may you ask, do we buy out the house? It is because we recognize that Broadway is an expensive endeavor. If you are coming to a typical show, you are paying $60-150 or more per ticket. Top tickets for Hamilton were going for $450 per ticket. We know that that is prohibitive for a family, and we know that parents of children on the spectrum, or who have other academic or sensory needs.

Autism Connection: Did you hold special trainings for staff and volunteers? Did you bring in outside experts?

Vanessa and Lindsey: Every volunteer and front of house staff member was specially selected to work our first show. Even with our high criteria we brought in our friend and expert, Lu Randall Executive Director of the Autism Connection to train our team. Everyone who was in the theater that day was trained by Lu. Over the past ten years she has continued to train our staff and volunteer core and she and her team have been invaluable to us.

Another group of people who we work with is the group of actors who are on stage. We like them to know a bit about our audience and differences that they may experience in timing or audience reaction. We explain that some laughs or applause breaks may differ from the typical show that they do night after night. We always get a great response from these cast meetings.

: Vanessa Braun, Director of Accessibility and Manager of Employee Engagement at the Pittsburgh Cultural Trust

: Lindsey Kaine, Manager of Accessibility & Program Development at the Pittsburgh Ballet Theatre

Autism Connection: For readers who may not have been to your performances, can you describe the differences and similarities to a typical performance that an audience member may see at one of your shows?

Vanessa and Lindsey: First, we have a team of outside professional volunteers, doctors, teachers, nurses, people who know the audience and who can help if needed. We spread them out throughout the venue. Then in the lobby we set up at least one quiet space and one activity space. In these areas, people can either stop in to blow off some steam or alternatively come to have a moment of calm.

In the theater itself, we have the lights up to about a quarter of their regular brightness, this is so that people can feel free to get up and down if they need to throughout the show. We have ushers and theater staff to hand out fidgets and share needed information. We allow personal snacks and communications devices that you would not see at a typical show.

Other than that, we want the experience to be regular with some supports, but regular. Production–what people see on the stage–is controlled by the touring show, but a few elements are softened or removed. So, the show takes out a bright flash of light or a sudden noise. The important thing is that the show stays true to itself.

Audience enjoying a sensory-friendly performance

Autism Connection: What do you have in mind for the future?

Vanessa Braun: In 2015 we started offering one sensory friendly show each year at the Children’s Theater Festival. We will continue that practice and keep an eye on the Broadway touring schedule. We look for shows out there that have broad based appeal, a show that will attract at least 2,000 community members, and a show that will be with us for three weeks or more. We love to bring Broadway to this new audience and are excited for the chance to do it again.

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.