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Category: About Autism

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.

A graph showing the usage of the word bereft over the years with a slight uptick in 2019

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.

 

 

colorful twine tied together forming the profile of a face in the negative space

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:

  1. Social Communication Differences: Difficulty comprehending and utilizing nonverbal cues, challenges in sustaining conversations, and struggles with recognizing and expressing emotions
  2. Sensory Sensitivities: Heightened sensitivity or aversion to specific sounds, sights, textures, tastes, or smells
  3. Special Interests and Routines: Intense focus and extensive knowledge in particular areas of interest, accompanied by a preference for routines and consistency
  4. Executive Functioning Challenges: Difficulties with organization, time management, planning, and flexible thinking
  5. 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:

  1. 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. 
  2. 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.
  3. 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:

  1. 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.
  2. 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.
  3. 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 spiral shaping into a person's head

Interoception: Recognizing Internal Signals in Autism

Interoception refers to the sense and perception of internal bodily sensations, an inner compass that helps us recognize internal sensory experiences. It is the ability to detect and interpret signals from within our own bodies, allowing us to be aware of various physiological processes such as heart rate, breathing, temperature, hunger, thirst, bathroom urges, and the feeling of pain or discomfort. Interpreting these signals allows us to gain awareness of physical and emotional states, aiding in self-regulation and decision-making.

Through interoception, we gain insight into our bodily states and needs, which helps regulate our overall well-being. It plays a crucial role in maintaining homeostasis, or the body’s internal balance. For example, interoceptive signals can inform us when we are hungry or full, prompting us to eat or stop eating accordingly. Similarly, interoception can alert us to feelings of fatigue or stress, signaling the need for rest or relaxation.

It is our “gut feeling” that is often linked to the idea of intuition, and it our body’s way of internally activating emotions. Interoception can be underactive, resulting in a lack of awareness of how we should feel, or hyperactive, spiraling alarming emotions. Sometimes, people can swing like a pendulum between the two extremes.

Janice Nathan, MS, CCC-SLP, talks about interoception.

Interoception also has implications beyond basic physiological awareness. It is closely linked to emotional experiences and the regulation of emotions. By perceiving changes in our internal state, we can recognize and respond to our emotional reactions, allowing for self-reflection and coping strategies.

While interoception is a natural and instinctive process, it can vary in intensity and accuracy. Some people may possess a heightened interoceptive sensitivity, enabling them to pick up subtle bodily cues and respond more effectively to their needs. Others may experience challenges in interoceptive awareness, which can contribute to difficulties in recognizing and managing physical and emotional states.

Understanding interoception has gained increasing attention in various fields, including psychology, neuroscience, and medicine. Researchers are exploring its role in mental health conditions such as autism, anxiety, depression, and eating disorders, as well as its potential for therapeutic interventions aimed at improving emotional regulation and overall well-being. When we are able to listen to our internal signals, we are better able to employ strategies to attain balance between mind and body. 

Learn more about interoception:

What You Need to Know About Interoception

Daily Activities for Self Regulation/Interoception

The 8th Sense Explained: Seven Introception Activities for Kids

 

photo of a lawnmower on green grass

Landscape: Lessons Learned

Looking for a way to positively impact an autistic teen or adult in your orbit? Consider hiring them to cut your grass. I’ve done this twice and here is what I have learned so far:

Grass cutting is a social skill.

Grass cutting requires knowing what the boss wants the lawn to look like. My first employee was a man with intense support needs who is non-speaking and always thinking! He loved cutting with a rotary mower – the old fashioned kind your gramma had. That made a kind of grass “confetti” he loved to create and then watch it fly. This means he really liked to cut grass in short, choppy bursts, and his original method made results akin to crop circles.

Did I care? Not really. Did I shape that behavior to straight lines anyway by standing across the lawn and asking him to come toward me? Yes, over time, since maybe he could transfer this skill to another customer. But to be honest, the artist in me loved the crop circles and I kind of miss that lawn art.

Expect an eye for detail.

This same young man learned to “look for it” when prompted – he would look around for the longer patches of grass, and take a run at them.  He enjoyed this method and it took advantage of his strong visual system. My second helper might pause as falling maple seed “helicopters” fly by.  Those catch his eye for a few seconds. That’s okay. He still gets the job done really well and with a great attitude.

Cash on a tree

Pay real money, at market rates.

If someone is doing a job for you, it’s only right to pay what someone else would make if the end result is similar or even better! Pay immediately (I am working on this as cash on hand is not something I am used to having). This reinforces the work behavior and is most respectful.

It’s okay to pay in advance.

And teach what an advance means. Sometimes I do this because I only have $20 dollar bills, and our rate is an odd number. But I still want to pay on time so I give and talk about an advance, especially noting that not all bosses do this – I don’t want to set up an unrealistic expectation for his next job. Hold the person accountable to the task owed to you in a timely manner so everyone wins.

Appreciate behavior you may not expect.

My second lawn person laid down on the grass the first time he cut it to eyeball everything, making sure it was even. He looked like a golfer lining up a putt. I said “You are super attentive to detail and that’s admirable.” He didn’t feel the need to check like that after the first time he made sure things turned out right. I did not correct him – he seemed satisfied with that one and only quality assurance check.

Again, win/win.

measuring grass

Point out visual results.

My autistic friends tell me the best jobs are ones where they can visibly see change as a result of their work. Recently I taught my new helper how to manually edge the lawn. Once he got the hang of it, the work went quickly. Then we stood and I pointed out how neat it looked, and once he focused on that, he smiled.  The next time he cut the grass, he finished, stopped and looked around at both the edging and the lawn, and said for the first time “Look how great it looks!” It’s possible he missed that in the past and didn’t look at the big picture. Helping people appreciate their own good work is a great practice we all could do more!

Don’t sugar coat things.

If you ask your employee to do something new, you may hear “I don’t want to do that.” Explore what he or she is thinking. That may mean “I’m not confident in that skill” or “I have no idea what you expect,” or “I don’t like it.” Help the person learn the new thing if that’s what you think is going on. And if it’s truly “I don’t like that weed whacking” then it’s okay to say, “Well, I can’t pay you for that part then if I need to do it myself.” Fair is fair, and teaching this early on is respectful.

In the same vein, if something is done poorly, point it out and ask why they think that happened. Maybe they got distracted and missed a spot. Or you may hear something like “Well, it’s been a really long time since I’ve done that,” which may mean, “I don’t remember how” or “I don’t know how and I am too shy to say so.” 

Give the person time to explain and see what you as a supervisor can do to help. Autism is in part a communication disorder and sometimes it takes a little detective work to figure things out and that’s okay.

apple pencil

Know what motivates the worker.

In my current situation, money = Apple products. The request for a very significant raise this season was because this worker wanted a new tablet. I explained that bosses pay a rate for a job regardless of what the employee might want to buy and that a financial goal is not the employer’s concern, but it’s really good to have one. This led to a discussion about fair market rate and about the cost of living increase over last year. So this worker negotiated a raise, just a smaller one than he proposed, and not one based on the latest tablet upgrade he wants.  Last night I paid him cash immediately and he exclaimed “THIS IS A NEW APPLE PENCIL!” Tying cash money to a tangible spending goal is a really great skill to see in a young worker! And it honestly reinforces my having cash on hand for him.

Teach about how this job can help get future jobs.

We have had discussions about what other jobs my helper is interested in (restaurant work). We’ve talked about me as a “reference” and discussed how new bosses want to check references.  “Are you on time? Do you learn fast? Do you take correction with a positive attitude?  Do you finish your work? I would say YES to all those things. That makes me a good reference.”  This got a response of “OH!” and now this young man knows a new thing about the hidden curriculum of work.

I learn more every single time it’s lawn cutting day. This current worker decided to leave one third of the job to do today because he likes getting paid twice in one week, it seems. Or maybe yesterday he met his goal of an Apple pencil, and today he is starting over with a new quest. That’s fine with me.

Having his help sometimes feels priceless! I benefit from his positivity and also of course, from the labor I don’t need to do so I can focus on other chores. So I recommend you think about that kid down the block, or a relative perhaps, and consider being their first boss. Who knows, you might kick off an entire career for someone while making your life a little easier in the process.

Classroom with children sitting on a circle mat eagerly raising hands

Opinion: Sorted Children Lead to Sorted Adults

I walk into school on my first day of kindergarten and an adult points me in the direction of my classroom.  Whew.  Made it!  I’m in the “Trauma, Depression, Anxiety, OCD, Autism classroom”.  It’s where people like me go to get the support they need. Next door is the “Hearing Impaired Wheelchair User classroom”. Okay, so yes, I’m being over the top. Realistically, when I was in kindergarten 30 years ago, we didn’t talk about mental health and anyone with autism was “taught” in another school or in the basement. 

“It is absolutely absurd that we sort people with disabilities. We sort them in school. We sort them at work. We sort them in the community. We wouldn’t do this to people outside of the disability world. So why do we do this to people with disabilities?”  

LRE is an initialism that came into my world when we were preparing for my son to begin his school career. LRE stands for Least Restrictive Environment, and it basically means that students with disabilities have the right to be educated with their typically developing peers in general education as much as possible for each student. “Each student” means that each student needs something different to be successful, not each student with an autism diagnosis needs an autism support classroom. I said it. Many students don’t need to be in classrooms with their diagnosis on the wall to be successful. 

Let me share an example. My son attended a preschool and was in a classroom where all the students had a diagnosis of autism. He would come home from school twisted in knots from overstimulation. Why? Because much like my son had behaviors (not always negative but certainly loud and many), so did the other students in his room for five hours a day.

First, they were four years old and that’s what four-year-old children do. Second, his wants and needs didn’t always mesh with everyone else’s. My son needed a structure and routine that flew in the face of other students’ necessary structure and routine. With these conflicting needs, the students would implode or explode, and need to recover. It is hard to learn feelings and coping skills when the classroom (the world) is loud. 

The knot twisting stopped when he went kindergarten and was in the least restrictive environment (LRE). He started in general education, and attended with 20 other students, with the support of a paraprofessional. Start with inclusion and adjust when a student communicates they need something to be changed.

Oftentimes, what is needed is not a segregated space where all the autistic kids go, it is person-centered support in inclusive, safe spaces where everyone can be themselves to learn, practice coping skills, and build healthy relationships with themselves and others. This applies to all students. They learn from each other, and they have the right to have access and explore learning opportunities within the general education curriculum, including health education. This doesn’t always happen in the segregated settings.  

There is only one world we all live in. We should not be modeling for any student that it is a best practice to sort people by a diagnosis.

E.R. Heffel

no one is more cherished in this world than someone who lightens the burden of another. Thank you volunteers

Volunteer Appreciation Week 2023

Volunteers! Where would we be without you?
Your contributions of time, energy, and expertise have helped us in so many ways. From organizing events, providing support to families, raising awareness, and fundraising, you have been there for us every step of the way. Your hard work and dedication have enabled us to reach out to more people and provide them with the resources and support they need.
Photos of volunteers at events, fundraisers, and sensory friendly performances.
Your generosity and kindness have touched the hearts of many families in our community. Your willingness to lend a helping hand and be a source of comfort and support to those in need is truly remarkable. Your efforts have not gone unnoticed, and we are forever grateful for everything that you do.
Photo of Mr Messado in top hat

Mr. Messado Delivers Sensory-Friendly Magic

On April 2, 2023, Liberty Magic hosted Mr. Messado’s School of Magic’s first sensory-friendly show. This performance was part of a collaboration between Autism Connection of PA, the Pittsburgh Cultural Trust, Liberty Magic, and Mr. Messado himself. His show required minimal changes because he is a natural working with all children.

During the hour long performance, audience members took active roles in the magic tricks, and Mr. Messado seamlessly flowed with participants’ excited responses, and reveled in their joy. 

Learn more about Mr. Messado’s School of Magic.