Autism Safety Expo 2025

PRESS RELEASE: THURSDAY, JULY 10, 2025

Autism Connection of Pennsylvania Presents Inaugural Safety Expo in Concert with the Jefferson Center for Autism and Neurodiversity


Monroeville, PA: Autism Connection of Pennsylvania, in concert with the Jefferson Center for Autism and Neurodiversity in Philadelphia, is proud to announce its first-ever Autism Safety Expo; a comprehensive two-day event devoted to promoting safety in the home and the community for people of all ages and stages on the autism spectrum and their families.

Autism Connection of Pennsylvania’s Safety Expo is important because it brings together critical resources that help ensure the well-being of autistic people in nearly every aspect of life, from their homes to schools to public spaces. Many families and self-advocates struggle to navigate complex systems when it comes to legal rights, medical needs, emergency preparedness, and physical and social safety. This Expo offers a rare opportunity to access all of that information in one place, with trusted experts who understand the unique challenges faced by the autism community. By creating a safe, inclusive space for learning and connection, the event empowers individuals and families to proactively build safer, more supportive environments.

Dates & Location

  • Friday, October 17, 2025 | 9:00 AM – 4:00 PM
  • Saturday, October 18, 2025 | 9:00 AM – 12:00 PM
  • Monroeville Volunteer Fire Company #4
    • 4370 Northern Pike, Monroeville, PA 15146

Expo Highlights and Resources

This “one-stop-shop” experience invites families, caregivers, autistic people, professionals, and community members to access vital safety solutions covering:

  • Legal Safety:  Guardianship, special education law, rights under the Americans with Disabilities Act, and access to legal aid organizations.
  • Medical Safety:  Including sensory-friendly best practices, medical ID tools, emergency-preparedness plans, and how to navigate healthcare settings comfortably 
  • Community and Social Safety: Safe travel, publicspace accessibility, social-skills training, and resources on self-advocacy and community inclusion.
  • Technology and Adaptive Tools: Exhibitors showcasing assistive tech, safety-alert devices, home-monitoring systems, and calming sensory aids.
  • First Responders Engagement: In person discussions with fire, police, and EMS personnel to build understanding of autism-friendly response protocols.
  • Caregiving & Family Support: Peer support groups, respite resources, and guidance from social-service agencies.

Why Safety Matters

Autism Connection of Pennsylvania surveyed autistic people, families, and caregivers about their greatest concerns. Safety is the utmost priority for people of all ages living in both rural and urban areas, and with different levels of need. In response, the Autism Connection is organizing this event to connect people with critical resources. 

Concerns about safety include wandering, self-harm, medication management, interactions with first responders

Safety is multidimensional: legal, medical, social, and environmental. By bringing together experts from each domain, the Autism Safety Expo offers resources to autistic people and families to proactively build environments, knowledge, and community systems that support neurodiverse safety.


Sponsorship and Exhibitor Opportunities are Available

Show your concern and care for the autism community by supporting this critical safety event. In return you will benefit from positive public relations, increase your brand awareness and visibility, and enjoy exhibit space and networking benefits.

Sponsor Information

Event Table Registration


Join Us!
This free and open event promises valuable tools, insights, and connections to enrich safety and well-being. For more information or to register as an exhibitor or sponsor:

Contact:
Autism Connection of PA
Email:
development@autismofpa.org


About Autism Connection of PA
Since 1996, Autism Connection of PA has served as a trusted resource for families and professionals across the state, offering support groups, educational workshops and webinars, advocacy, and information on art, justice, school, and lifelong planning.

About Jefferson Center for Autism and Neurodiversity
A division of Jefferson Health, the Center champions neurodiverse-aware design and clinical practices, highlighted by its sensory-inclusive Honickman Center in Philadelphia’s city center.


The official registration and financial information of Autism Connection of PA may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.

Interview with Ayana Singh: Science, Empathy and Innovation

Autism Connection of Pennsylvania is thrilled to be chatting with Ayana Singh, a high school freshman who’s already making an impressive impact in the world of science and advocacy. In 2024, she created a well-being and sensory journal for caregivers and people with autism spectrum disorder (ASD) to track progress and day-to-day life online. This year, she created a machine learning model that uses functional magnetic resonance imaging (fMRI) scans to predict autism severity.

Both projects were presented at the Carnegie Science Center as part of the Pittsburgh Regional Science and Engineering Fair (PRSEF), winning notable awards from the U.S. Naval Research Office, Pittsburgh Intellectual Property Law Association, and more.

Inspired by her close family ties to autism, she’s passionate about using technology to make a real difference. We’re excited to hear about her journey, what drives her, and what’s next on her incredible path.

Ayana Singh at science fair

Ayana standing next to her science fair project

Background and Inspiration

What first inspired you to begin researching autism and sensory well-being at such a young age?

What first inspired me to begin researching autism and sensory well-being at such a young age was a deeply personal experience within my own family. My sister and my cousin are the same age, and when they were around 2.5 years old, we began noticing clear differences in their development—differences that raised questions none of us had answers to at the time. Eventually, my cousin was diagnosed with autism in India, but even after the diagnosis, my family struggled to access consistent therapy and support.

Witnessing this made me realize how much of a gap there is in autism awareness, diagnosis, and sensory support systems in many parts of the world, especially compared to the research and resources available in the U.S. That contrast motivated me to dig deeper, and to explore how I could use science, data, and innovation to help families like mine better understand autism and support neurodivergent individuals more effectively. It became more than research, and a personal mission.

How have your personal experiences with family members on the autism spectrum influenced your research?

My personal experiences with family members on the autism spectrum have been the foundation of my interest in this field. Last summer, I had the opportunity to teach piano to a young girl on the spectrum who was the same age as my sister and cousin. That experience was eye-opening. I saw firsthand how deeply she connected with music, how it calmed her and how she seemed to process it in a completely unique way. It made me realize that there are so many dimensions to autism that are still not fully understood. That moment really deepened my curiosity and inspired me to explore different aspects and potential markers of ASD through research.

What drew you to the intersection of neuroscience and machine learning for your project?

What drew me to the intersection of neuroscience and machine learning was a gradual but deeply personal journey. My first project related to autism focused on developing a software program that tracked sensory well-being. It was my personal response to the challenges my family faced in trying to understand and support the unique sensory needs of my cousin, who is on the autism spectrum. 

As I learned more, my curiosity expanded to the possibility of early detection—how powerful it could be for families to receive timely support. That led to my second project, which explored how technology, particularly machine learning, could be used to identify early markers of ASD in a way that’s accessible and scalable across different regions, including countries like India where resources are limited. This naturally brought me to neuroscience and neuroimaging data, where machine learning can help uncover patterns that might otherwise go unnoticed. It felt like the perfect intersection of science, empathy, and innovation.

Research and Development

Could you walk us through your project — how does your machine learning model use fMRI scans to predict autism severity?

My project focuses on using fMRI data and machine learning to predict autism severity, offering a neurobiological alternative to current tools like ADOS and ADI-R, which don’t reflect brain-based changes over time. EEG and eye-tracking studies have tried to address this gap, but they can be uncomfortable for autistic individuals. I aimed to build a non-invasive, adaptable model grounded in brain function.

I used data from ABIDE II, the most recent publicly available ASD dataset. After preprocessing the fMRI scans in Python [programming language], applying brain masks and extracting BOLD signals, I segmented each participant’s brain into clusters using K-Means, grouping brain voxels [three-dimensional representation of brain tissue] based on signal similarity. This helped me analyze whether certain brain regions contribute to autism traits.

Next, I selected key clinical and imaging features such as age, IQ, and BOLD-based brain clusters, and input them into a Random Forest model, chosen for its ability to handle complex data and prevent overfitting. I optimized the model and used feature importance analysis to evaluate which inputs best predicted the ADOS-2 total severity score. My model achieved 87% accuracy (R²), which is high compared to existing studies. In the long term, this model could allow updated, scan-based severity assessments across the lifespan, addressing how autism manifests differently over time, while staying non-invasive and clinically useful.

What were some of the biggest challenges you faced while developing your model?

The biggest challenge which I experienced was preprocessing the fMRI scans which means removing excess noise and clutter from the scans. I had difficulty because I had never done it before, and there were few easy-to-understand resources online. To overcome it, I tried various methods such as employing different python tools and researching implementation.

How did you learn the technical skills necessary to work with machine learning and fMRI data while still in middle school?

I have been learning how to code ever since I was in fifth grade. My first introduction to programming was from mentors at the nonprofit Steel City Codes, which I am now a part of and have decided to give back as a mentor myself.

Was there a specific moment during your research when you realized you were onto something exciting?

The first moment of amazement was definitely seeing the fMRI scans. Afterwards, when I was visualizing the results of the model in scatter plots and different types of charts, I felt hope that the project was moving in the right direction and progress was being made.

Brain Scan

An fMRI scan from Ayana’s project

Recognition and Impact

How did it feel to have your work recognized by the Carnegie Science Center?

Since I am still a high schooler, one of the places I can bring my project and get people’s attention on this topic is the Carnegie Science Center. I really am thankful to the PRSEF who gives us this platform to share and talk to experts, judges, and sponsors with similar experiences and research.

What does it mean to you to have your work shared with organizations like the Autism Connection of Pennsylvania?

It means a lot to have my work shared with organizations like the Autism Connection of Pennsylvania. It inspires me to engage with organizations and nonprofits that share a common goal of improving the lives of people with ASD. Knowing that my research aligns with their mission gives me hope that, together, we can create a future where people with autism have access to better support, understanding, and resources.

How do you hope your research will contribute to better treatment planning for autistic people?

I hope my research will lead to more personalized and up-to-date treatment plans by providing a non-invasive, brain-based way to assess autism severity, helping clinicians track changes over time and tailor therapies more effectively.

Ayana presentation

Leveraging fMRI and Machine Learning to Analyze Gender Disparities in ASD Severity Prediction

Personal Insights

Many students your age are just beginning to explore science. What advice would you give to young researchers who want to take on ambitious projects?

My advice is to start with a question or topic that genuinely means something to you, even if it feels big. Break it into smaller steps, be curious, and don’t be afraid to learn things as you go. Ask for help, learn, and don’t give up on your project(s).

How do you balance your academic work with your independent research projects?

My weekends are devoted to research and any other extracurriculars. Whenever I have time on the weekdays, I am excited to work on researching and learning more.

What has been the most rewarding part of your research journey so far?

The most rewarding part of my research journey has been seeing everything come together, the model actually working, the data making sense, and the results matching what I hoped to find. But even more than that, sharing it with others whether in presentations or papers, and seeing people understand and care about the impact has been incredibly fulfilling.

Future Plans

Are there any next steps or new ideas you’re excited to explore based on your current project?

I want to finish writing my research paper and eventually turn my model into a publicly accessible tool. My goal is to make it available in under-resourced regions, including countries like India, where support for people with autism is often more limited compared to places like the United States.

Looking ahead, do you envision a career combining technology, medicine, and advocacy for neurodivergent people?

In the future, I aspire to become a neurologist, where I can combine research with clinical work. I hope to focus on developing innovative technologies that improve the diagnosis and treatment of neurodivergent people, while also advocating for better support and awareness in underrepresented communities.

Reflection

What is one lesson you’ve learned through this experience that you will carry with you in your future work?

One lesson I’ve learned is the importance of persistence as research doesn’t always go as planned, and being adaptable is crucial. Many aspects of my project didn’t go as expected, and I found myself stuck at certain steps or facing unexpected issues. There
were times when I wanted to quit due to these challenges, but if I hadn’t pushed through, I wouldn’t have reached my end product or successfully completed the project.

How has this research experience changed how you view science, medicine, or advocacy?

My research experience has shown me that science is more than just experimenting in my school chemistry lab. If I did not explore the world of science more, I would not have stumbled upon fMRI and discovered how it connects with ASD. As for advocacy in medicine, I have learnt how important it is to ensure that people, especially those in underserved communities, have access to the tools, support, and treatments they need.


National Institutes of Health Funding: University of Pittsburgh’s Center for Excellence in Autism Research

We have taught about the medical diagnosis of autism for almost 25 years. Before the National Institutes of Health (NIH) funded brain research, teaching felt like simply trying to convince people, without evidence, that behavior and communication were different because an autistic person’s brain and body made them that way.  People still walked away skeptical. Teachers still blamed parenting. Folks said it was vaccines. Giving talks felt weak and at times pointless when too many people had closed minds.

Pictures Speak 1,000 Words

The number of skeptics leaving our classes dramatically reduced once NIH-funded brain imaging and other studies showed the medical facts. Autistic brains are wired differently. Some parts – like the piece that controls facial muscles being really small in many – are very different than average. Teaching with images finally showed how and why autistic people needed to do the various things others found hard to understand. Science helped us stop much of the punishment, torment, and abuse heaped on children and adults who moved, talked, and behaved in ways others found confusing or unacceptable.

The NIH helps parents, other caregivers, and supporters learn to adapt their ways to better nurture and accept the people they love, care for, and support. It helps employers tap talents while giving reasonable accommodations to let people flourish while building corporate revenues. And research helps law enforcement make better decisions on a 911 call response, and judges to better understand when someone makes a disability-based error or simply is doing “autistic things”  lacking criminal intent, which triggered a stranger’s 911 call.

We cannot stand by and watch the erasure of science that’s been truly lifesaving. Dumbing down society by cancelling scientific fact finding is unacceptable. We cannot count the emails and phone calls traded with our very good research friends at the University of Pittsburgh’s Center for Excellence in Autism Research, or with other generous NIH scientists nationwide who help us translate things like highly technical functional MRI science to the literally thousands of people we have reached. It has mattered a great deal. Words cannot express how much.

The Importance of Autism Research 

The Autism Connection of Pennsylvania does not rely one bit on NIH funding to exist. However, our population’s survival relies on the gifts NIH science has provided in terms of our own understanding, and our ability to show others the right way to treat people. This has been critical in preventing or resolving the most dangerous situations: when people explore without fear (“wanderers,”) or are victims of neglect and abuse, or are accused of crimes and fall into the criminal legal system and prison. Homeless people, those without adequate food, people left alone in the world after their parents die, children bullied, adults fired due to basic misunderstandings, people with epilepsy or other common coexisting disorders, children and adults needed psychiatric care and medications – the things we commonly deal with every single day to the tune of about 260 help requests a month – all have been helped by our  understanding how people internally process information, or how they cannot and need external help.

Please do anything you can to save NIH funding. Destroying decades of successful work by extremely smart and incredibly kind research friends is criminal and a huge talent loss, not to mention a tremendous waste of dollars invested for all the right reasons, with critically valuable outcomes to date. The future is in our hands – and we must fight to preserve it for the autism community.


2025 Pittsburgh Marathon Run for a Reason

Autism Connection of Pennsylvania is a charitable partner for the 2025 Dick’s Sporting Goods Pittsburgh Marathon, Run for a Reason!

There are 10 different events during Marathon weekend, and we hope you’ll choose Autism Connection of Pennsylvania as your charity!

How it Works in 5 Steps:

Step 1: Choose Your Event
Select one of 10 events, including the marathon, half marathon, marathon relay, 4-mile fitness challenge, 5K, champions mile, kids marathon, toddler trot, or pet walk.

Step 2: Fuel Your Participation with Purpose
As you register for your event, opt to join the Run for a Reason Charity Program and choose Autism Connection of Pennsylvania in the drop-down. This marks the start of your journey as a champion for change. With every step, you’ll be raising funds to support adults and families affected by autism.

Step 3: Rally Support
Share your commitment with friends, family, and colleagues. Harness the power of your network to amplify your impact. Autism Connection of Pennsylvania can provide stories of impact to inspire those around you to support your participation in this life-changing cause.

Step 4: Raise Funds, Ignite Impact
Every dollar you raise is a testament to your dedication and a catalyst for change. Empower your movement with the knowledge that your participation directly supports autism resources, education, support, and advocacy.

Step 5: Rewarding Your Dedication
If you hit your fundraising minimum (determined by event), your registration fee will be refunded—a tangible token that your commitment truly matters.

Fundraising Minimums:

  • Marathon: $500
  • Half Marathon: $400
  • Back Half Marathon: $1,000
  • Relay Team: $1,000
  • 4-mile Fitness Challenge: $200
  • 5K: $150
  • Champions Mile: $50
  • Kids Marathon: $50
  • Toddler Trot: $50
  • Pet Walk: $50

The Run for a Reason Charity Program is more than just finishing an event—it’s about moving with purpose, becoming an agent of change, and making a lasting, positive effect  in the autism community.

Join us and run for autism awareness, support, and inclusion!

Not a Runner? Not a Problem!

There are many ways to support Autism Connection of Pennsylvania in the 2025 Dick’s Sporting Goods Pittsburgh Marathon Run for a Reason even if you’re not running. Here are some great ways to get involved:

1. Fundraising and Donations

  • Sponsor a Runner: Contribute to a participant’s fundraising goal.
  • Share a story: Do you know a runner with a great story? Email tammi@autismofpa.org to share.

2. Volunteer to Cheer at the US Steel Champions Mile

  • Join Autism Connection of PA’s Cheer Station: Encourage runners along the course while representing Autism Connection of PA.
  • Share on Social Media: Post about Autism Connection’s involvement and encourage others to donate.

4. Corporate and Community Partnerships

  • Corporate Matching Gifts: Encourage your employer to match donations.
  • Sponsorships: Connect Autism Connection of PA with potential business sponsors.
  • Team Participation: Organize a group from your workplace or community to fundraise together.

Even if you’re not running, your support can make a big difference in helping Autism Connection of Pennsylvania continue our vital work. Every effort counts!


Explaining Feelings and Pain Levels to Medical Staff

Willow Marie Iti is an autistic person, who like many, has always found it challenging to explain her body’s feelings and pain levels to doctors. “It often felt distant and subjective. So, I decided to create my own scale to help others understand and be more objective. Here is a free resource from my upcoming book. I hope this helps someone!”

The scale takes a unique approach that includes emotional elements that play a role when a person is feeling pain or discomfort while trying to put the experience into words. Many autistic people have difficulty with interoception – the sense and perception of  internal bodily sensationsso recognizing and communicating internal sensations, hunger, emotions, and pain can be very challenging. Willow’s scale gives insight into the process of identifying and communicating what a person is feeling internally, both physically and emotionally. 

Intuition Versus Fear scale details in post

Intuition VS Fear

Intuitive Sensations (rate intensity 1 -5)

BELLY/GUT

  • Butterflies fluttering 
  • Deep knowing sensation
  • Warmth in stomach
  • Spacious, open feeling

HEART/CHEST

  • Calmness in heart
  • Open/expansive feeling
  • Steady heartbeat

MIND/HEAD

  • Mental clarity
  • Quiet mind
  • Tingling sensation

Intensity Scale for Intuitive Sensations

  1. Whisper-like, barely perceptible
  2. Gentle nudge, quiet but present
  3. Clear signal, steady presence
  4. Strong knowledge, deeply felt
  5. Profound certainty, unmistakable

Circle words that describe your intuitive feelings: 

Gentle * Flowing * Steady * Clear * Peaceful * Quiet * Deep * Certain * Patient * Grounded * Light * Warm * Expansive * Soft * Knowing


Fear Sensations (rate intensity 1 – 5)

BELLY/GUT

  • Pit in stomach
  • Knotted/clenching
  • Churning sensation
  • Tight/constricted

HEART/CHEST

  • Tightness in chest
  • Racing heart
  • Shallow breathing

BODY

  • Sweaty palms
  • Muscle tension

MIND/HEAD

  • Racing thoughts
  • Mental fog/confusion
  • Overthinking/spiraling
  • Difficulty concentrating

Intensity Scale for Fear Sensations

  1. Slight unease, background tension
  2. Noticeable discomfort
  3. Definite distress
  4. Strong anxiety/fear
  5. Overwhelming panic/fear

Circle words that describe your fear-based feelings:

Urgent * Racing * Tight *Chaotic * Scattered * Rushed * Constricted * Pressured * Frozen * Jittery * Tense * Heavy * Trapped * Restless * Clouded


Willow runs Sacred Awareness Facebook page, and she is working on a book that will include resources like the Intuition and Fear Intensity Scale. 


Autistic Language Processing: What Words Mean Versus What People Mean

Autism Connection of PA hosts the Late Diagnosis of Autism virtual support group the second Wednesday of every month, and topics cover everything from masking to finding out how to get an adult autism evaluation. On December 11th 2024, the group explored Autism and Communication.

The Late Diagnosis of Autism Support Group Meeting was held online with an option to leave cameras off, and/or use the chat feature instead of speaking. The topics people brought up during this meeting included:

  • Communication difficulties
  • Difficulties with small talk
  • Offending people inadvertently
  • Positive aspects of communication differences
  • Ask questions to cope when they feel overwhelmed
  • To end conversation “thank” them
  • Sent boundaries by setting time limit
  • Texting communication differences lack of body language
  • Using AI to help with tone in emails
  • To help with conversation exhaustion, run to the bathroom and have concealed fidget items

Social communication has been a concern for, well, my entire experience interacting with people, before and after I knew I was autistic. Interactions with peers in elementary school were baffling, and I often was at a loss when it came to words and meaning. This differs from understanding written communication, and it primarily settles on literal meaning versus social meaning: the difference between what words literally mean and what people mean when they use words, along with the complexity of reading body language, facial expressions, and tone of voice, not to mention the unspoken rules of social discourse that I can’t help but break because they are situational and ever-changing. There are a lot of things going on and I tend to focus on one thing at a time, like many autistic people do.

Balancing between the complex rules of grammar and the even more complex rules of social interaction is very taxing on the brain. During social exchanges, we “read” expressions, gestures, tone, and try to put everything in context. The challenge is that I tend to focus on one thing at a time, and I miss out on important details.

For example, if someone says, “I didn’t expect to see you here,” I know what the words mean, but I don’t know what the meaning of the sentence is. This is because it can mean a number of different things, and if I don’t catch the facial expression or tone, I circle back through all of the possible interpretations, and then I miss whatever follows in the exchange. This can make me a poor conversationalist because my mind tendrils out into thoughts that can’t be controlled, and are set into motion by words. 

When I’m trying to make sense of what a person means, my gut instinct is to rephrase their spoken words aloud to help things make the most sense, which can come off as constantly correcting people, and is usually off-putting. So while I am always striving for best understanding, and I think I am improving the interaction, I may actually be misunderstood in the process.

Person: “He convinced me to vote.”

Me making sense of the statement: “He persuaded you to vote,” seems like correcting, but it’s interpreting. 

Decoding: It’s Just Like Riding a Bicycle

Some of us have to work hard to decode what people actually mean, which takes a lot of time and energy. It’s like how riding a bike comes naturally to many, but for others, it is a lot of work to think about coordinating: push left foot down, then right foot, keep eyes on the horizon, don’t look down, grip the handle bars but not too hard, don’t let the wheel shake or wobble, keep balance but lean to one side while twisting the handle bars and pedaling at the same time to make a turn. Whew! This is how hard interpreting language can be for autistic people who often do things best, one thing at a time.

Man falling off a bicycle

Yes. It is just like riding a bicycle.

When I was a child, I had a stutter, and my speech therapist suggested, “Don’t think about what you are trying to say, think about the words you are using.” I have a clear understanding that there is a language of thought and a language of words, and they don’t always gel. If you’ve ever said, “How should I put it?” you may be able to relate. It – the idea that is in the language of thought – has not been formed into words yet. It just hangs there, and you may not find the words to communicate it at all. For me, words, dictionaries, thesauruses, and etymology have become areas of intense focus, and it’s magnificently complicated. 

The following may appear to be nit-picking about correctness and grammar. I don’t mean to be prescriptive as a general rule, or imply everyone should use standard written English in conversation. To me, it is more important to consider how words create social meaning, than to dictate how they should be used based on grammatical rules that date back to the 1500s, and honestly seem arbitrary (for example, Sir Thomas Smith’s De Recta et Emendata Linguae Anglicae Scriptione [1568] that bases English grammar on Latin, and yes, it’s written in Latin).

(Dictionaries are either traditionally prescriptive and or descriptive, and they’re at odds. The first descriptive dictionary that I’m aware of is Webster’s Third New International Dictionary of the English Language, Unabridged (1961). My favorite is Bryan Garner’s A Dictionary of Modern American Usage (1998). This type of information is probably why people may navigate away from me at parties – I’m a bit of a word nerd, so I’ll stop here with the dictionary usage wars.)

Literal Meaning and Social Meaning Confusion

A social exchange that can interfere with interpreting meaning may go as follows:

Person: “I’m nauseous.”

Me: “You’re not nauseous. I assure you. I feel fine and everyone else seems perfectly okay.”

Why might I, as a literally-minded person, say that? She’s saying she feels sick, and I’m misinterpreting that as her saying she worries she is making others feel sick. I figure that I am doing the person a kindness in assuring her that she is indeed not nauseous since no one appears to be sick in her presence since nauseous literally means “causing nausea or disgust.” Over time, the meaning has changed to “feeling nauseated” in a social context, and in descriptivist dictionary entries.

When it comes to social language – how spoken words are actually used – in this type of exchange, I will most likely be wrong. She may wonder why I would suggest that I know exactly how she feels, and why on earth would I mention that others don’t feel sick?


“Language Nerd Masking © Autism Connection of PA, 2024 is camouflaging knowledge of correct language by trying to blend in by allowing the rules to be bent.” With enough practice, you can even break the rules yourself!


There’s an exhaustive list of words that take up my brain energy and require a lot of effort for me to decode in conversations, because they no longer hold their literal meaning. Two examples:

Impact – is a noun currently used as a verb – maybe because affect doesn’t have as much punch. You wouldn’t say “I was impacted by the car” because it simply doesn’t make sense. Wisdom teeth are impacted. But you would say, “This event impacted my life.” In my mind, I have to rephrase the sentence as “This event made an impact on my life” for it to make sense to me. Also, I have no idea whether the impact was positive or negative. This all takes time for me to process, and if the conversation is moving forward, I miss a beat, or I may get completely lost. 

Myriad – is like numerous but it’s now being used as a noun “a myriad of reasons” that strikes me as odd as someone saying “a numerous of reasons” but it’s how people use the word, and usage prevails.

These and myriad other examples impact my social interactions because I have to  take extra time to figure out what people mean – and that extra time takes my attention away from other words exchanged while I am sorting this all out. The conversation moves forward, and I’m a step behind and can’t catch up.

Words Drive Meaning, Meaning Drives Relationships

Consider the back-and-forth dynamic in conversations, and think about a time when you have asked a “yes or no” question. Did the person simply say “Yes” or “No” leaving something awkward hanging in the air? They may be aware of the awkwardness, but may not be aware of the social rule requiring further information. 

When you’re in the presence of an autistic person, remember that the onus is always on them to sort through meaning. Exchanges that come naturally to non-autistic people take a considerable amount of energy for an autistic person to process, interpret, and respond. And it’s exhausting.

The writer David Foster Wallace explores struggling with peer social interactions as a child in Consider the Lobster and Other Essays. He excelled in standard written English, but he was “actually deficient in Language Arts…[had] only one dialect…[could not] alter his vocabulary, usage, or grammar, [could not] use slang or vulgarity; and it’s these abilities that are really required for ‘peer rapport,’ which is just a fancy academic term for being accepted by the second-most-important Group in the little kid’s life.”

Many of us continue to struggle to feel accepted by the “Group,” as adults.  Taking all of this into account, revisit the bulleted list from the Late Diagnosis of Autism Support Group meeting. What would you add to the list for yourself?


Richard Tambwe Shares His Vision of Hope and Autism

Welcome to Pennsylvania. What brings you to Pittsburgh?

I have been living in Pittsburgh since 2021 (in the midst of Covid-19 pandemic). I am a PhD student at Duquesne University and I am already finishing my program in the Theology Department. Not only does my Christian faith in God encourage me to serve others, but also my area of studies sharpens my social awareness and inspires me to practice my faith by “creating beauty” for social justice. Indeed, there is an intrinsic link between beauty, love, justice, and peace that can be explored ad infinitum.

Why is autism an important topic for you?

Autism is an important topic for me because I am the father to a soon seven-year-old boy who was diagnosed with ASD a few years ago. I am still gradually learning about it and slowly seeing things differently in the line of Rick Guidotti’s “change how you see, and see how you change” (Positive Exposure). For example, when I started seeing my child’s ASD (oftentimes emphasized through the aspect of “disorder”) as a “disability for him,” that is, a limiting condition for him, not a “burden for me or for his mother or the wider society,” I started focusing on him and only him, than on anyone or anything else. This helped me avoid many noises and allowed me to see many other things, including the beauty of the mosaic of life and humanity, in which each one of us has their role to play. As a believer, I am convinced there is a reason why God sent my son with the ASD condition and it is my duty to help him lead a full and happy life, and fulfill all his potential.

You have a vision about hope, learning and resources. Can you share that vision with us?

Here is what I have in mind:

Perception of Disability

The perception of disability, be it physical or mental, is perhaps not the same between the Democratic Republic of the Congo (DRC), the country where I come from, and here in the USA: is there a way to help Congolese refugees arriving here not to feel embarrassed if they have a disability or know of a family member who needs help in this sense? The aim would then be to reassure them and show them that each individual is a gift that adds to the mosaic of the whole human community (every difference deserves to be celebrated, not stifled or annihilated or stigmatized).

Taking Perspective from the Disability Community

As is the case all over the world and perhaps even more so in DRC, where culture sometimes leads people to believe that the origin of any disability is witchcraft or curse, isn’t it important to educate people to approach disability from the point of view of disabled people themselves and for them, rather than from the point of view of society and its general standards? The aim here is to see the people concerned as having a “disability,” not being one themselves, i.e. they suffer from a limiting condition (physical or mental); they are not the ones inflicting suffering on society. They are the ones to be put at the center, considering everything from their point of view (movements, senses, activities, and so forth) and not from society’s great number.

Changing the Narrative

The disabled person is perceived as “different,” not as abnormal or as a stumbling block, a gene, and an embarrassment from the point of view of the majority. They have “difficulties in forming and maintaining social relationships, by impairment of the ability to communicate verbally or nonverbally, and by repetitive behavior patterns and restricted interests and activities” (Merriam-Webster), and not the other way around, where the majority would see them as incapable, lazy, incomplete, lesser, abnormal, etc., as if they were responsible for the limitation they suffer from… They are the ones experiencing “social isolation;” perhaps they are the ones who are disturbed by our inquisitive gaze and not the other way around description as “lack of eye contact.” Educating people with such an awareness is irreplaceable.

Learning from People with Lived Experience

In the case of autism, for example, many parents and relatives are often at a loss, and many of their questions (often unformulated) remain unanswered. Shouldn’t we be a step ahead of them, considering the experience of others who have gone through the same thing, while recognizing that every case is unique, and pointing out resources for certain answers that are already known?

Hope and Encouragement

Wouldn’t there be more impact and positive results if all this were done in a relaxed way, emphasizing aspects of hope rather than despair or fear, joy rather than sadness, possibilities rather than limitations, and so forth? The aim is to reassure the family members of the person living with autism that their child is a person with enormous potential, just like any other child, provided they get an education appropriate to their condition.

Much of what you talk about requires people to change the way they perceive autistic people. Part of that requires empathy and new patterns of thought. What are some ways we can achieve this?

A practical way of doing this could be sharing videos, TikTok posts, art products or production (photos, paintings, music, etc.), Internet links, resources, and so forth, all in an informal, relaxed and pleasant way, while also providing useful information. For example, if I had to recommend the American comedy-drama series “Monk”[1] On Netflix, assuming that the “obsessive-compulsive disorder” of the main character qualifies as ASD, I would have pointed out that Adrian Monk (Tony Shalhoub) is a good example of a successful integration of an individual with disability in the smooth running of a city. But this does not prevent us from grasping the different challenges facing Monk and his entourage throughout the episodes.

Here are just a few examples:

  • Monk’s apparent lack of empathy
  • his phobia of germs
  • his obsession with the idealized image of his late wife Trudy Elliot Monk

Is Monk’s “absence of empathy” or “germ phobia” a problem for him or for the larger society? Isn’t it true that, once Monk is known as such, something else is expected of him (namely, solving homicide’s mysteries with the help of his assistants and colleagues) and not his sympathy or sociability?

Everybody loves Monk’s efficiency, while abhorring his sociability. Nevertheless, whether it is Sharona Fleming (Britty Schram) or Natalie Teeger (Traylor Howard), Adrian Monk’s assistants and fellow cops, they all manage to discover his qualities, understand him and, frankly, love him, all the while keeping him involved in the running of the San Francisco Police Department’s task force dealing with homicides. Besides, Monk’s unconditional love for Trudy (even after she dies) is a model of a lifetime engagement of love.

Inspired by this tragicomic series and the way it is perceived by the audience watching it, and placing Monk at the center, I wonder if it can serve as an example for thinking about policy and advocacy for people living with the disability of autism in the US. It is not a question of charity, which should be left to the religious sphere, but of justice and common sense of give-and-take that govern interactions in a civilized society.


[1] Andy Breckman (Creator), Monk [Comedy Drama Series] (2002-2009), Mandeville Films, Touchstone Television, and Universal Cable Productions.


Autism Connection of Pennsylvania thanks Richard for sharing his vision. A simplified version of the interview is below. 

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