Education – Autism Connection of Pennsylvania

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 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.

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.

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.

Gia sitting on a chair instructing a class

IGIA Movement for Health Visits Autism Connection of PA

IGIA Movement for Health is well known in Pittsburgh, Pennsylvania for its innovative approach that incorporates various somatic practices like yoga, meditation, Hanna Somatics®, and dance to tap into the power of internal movement, stimulate new neural pathways, and improve the mind’s regulation of posture and emotions.

For the autism community, sensory overload and difficulty with interoception can interfere with the ability to recognize and manage emotions, so Autism Connection of PA was ecstatic to be invited to host IGIA Movement for Health for three pilot movement workshops. Three Rivers Community Care is also hosting a class on August 12th.

Care practitioner and IGIA Co-founder, Gia Cacalano, leads the Master Classes, taking cues from attendees to form her approach. IGIA movement practices can be done both seated and standing, they’re accessible, and no two classes are exactly alike. Co-founder and CEO, Harris Farris quietly participated in the first pilot class along with a small group. One autistic participant shares her experience with the class, and encourages others to attend.

Experiencing IGIA for Movement Master Class

I honestly didn’t know exactly what to expect, which can be a great source of anxiety. It was hot outside, and even though it was only 10:15 in the morning, I was already feeling overwhelmed with sensory overload. At least I think that’s what it was. Sometimes it can be difficult to identify what is going on with me, both physically and emotionally. I also realized that I had lost track of time and was running late.

The room was open and large with soft lighting. The instructor, Gia, was welcoming, the number of people in the class was small, and I had a great sense that I could just be myself. Gia explained that there is no wrong way to do the movements, and described how each movement affects the body.

Relaxes the nervous system
Spatial awareness in the environment
Internal spatial awareness – how I moved and how those movements related to how I was feeling
Observational rather than judgmental – no worries about being right or wrong, just noticing
Feeling less self-conscious – less resistance to trying something new
Sense of calm

Video: Harris Ferris demonstrates some simple movements

I recognized some of the movements and I thought, “Hey! These stem from stims!” Self stimulatory behaviors (or self-regulating behaviors) often serve a purpose, and I was perfectly happy to do some hand flapping that transformed into more delicate movements. It turns out that flapping and jumping ignites the lymphatic system, and can improve the immune system.

Visual stims were also weaved into the movements. We worked on eye tracking along with slow, intentional head movements that seemed to broaden my peripheral sight. I was able to take in the entire room visually rather than focusing on specific elements.

“Rocking is a controlled fall,” the instructor said. This statement stuck with me because I usually fight the urge to rock back and forth to calm myself. The slow, intentional rocking movements were among my favorites, and it was especially helpful to know that we were working on balance along with body awareness.

Time passed quickly in the movement class, and even though there was no rigid structure, the instructor came full circle and this helped me recognize that the session was coming to a close soon. We began and ended with foot movements, gradually rocking to a standing position.

I felt grounded and calm after the session, and I continued to notice when my muscles (especially in the shoulders) were getting tight throughout the rest of the day. I can see how practices from the movement class could help me regulate emotions after sensory overload, or when I struggle with interoception (during times when I feel disconnected from what I’m feeling, whether an emotion or hunger, fatigue or thirst).

This was the first of three sessions, and they are off to a great start.

Gia notes that “even simply being present in the room–just observing and breathing–changes the dynamic. Even if someone showed up and just focused on breathing, that would be a complete session.”

If you want to learn more about IGIA for Movement Master Class, please visit IGIA Movement for Health.

To participate in upcoming classes August 10th and 12th register here.

Goodwill Hose Company Ambulance parked on a sunny day

Disability is Not a Crime Training in Lock Haven Pennsylvania

We were thrilled to visit and teach new friends from the first responder community in and around Lock Haven, PA this past week. We listened to our audience’s experiences and training goals, learned how tremendously professional and caring they are in their work, then launched into delivering “Disability is Not a Crime” content.

Everyone in the room had autism or an autistic relative, and one learner manages two autistic employees, so engagement was high. The conversation was so fantastic we stayed well past the end time of 9:00pm, thinking of creative ways to support autistic people in emergency situations.

Blending an autistic presenter (who is an EMT) and a non-autistic trainer seems to help people feel comfortable asking questions no matter their personal experience. We left feeling a little sad that we don’t live closer to experience their beautiful area and work together more to support folks with disabilities in the region.

Huge thanks to Goodwill Hose Company Ambulance Association for hosting us! And thank you to the attendees for sharing stories of finding missing persons who wander (some multiple times), supporting autistic people in car accident responses, and for telling us a few rattlesnake stories we don’t often get to hear!

Since we were at an EMS base for the training, we had the opportunity to take some photos of equipment. We will be using the images to help people understand what to expect in emergency situations in an ambulance. People may be safer if they know a little more about what to expect when they are sick or injured. Believe it or not, it is not uncommon for people to be arrested and charged for fear-based behaviors they may have during emergency situations, when they are injured or sick on the scene, or in an emergency room.

This project is funded by the Pennsylvania Developmental Disabilities Council.

Child Health Association of Sewickley Grant: Spelling

We are glad to share that Autism Connection of Pennsylvania has been granted the opportunity to further our mission of being a lifeline and hub for families and adults in the autism community. With heartfelt gratitude, we announce that we have been awarded a grant of $10,000 by the Child Health Association of Sewickley.

We believe in leaving no member of our community behind. Our organization is disability-led, with a passionate team that includes three autistic board members, and 33% of our staff is autistic. We serve people and families from infancy through older adulthood, with a goal that
everyone receives the support, information, and advocacy they deserve.

This grant is a testament to our commitment to inclusivity and accessibility. With these funds, we will embark on a project aimed at supporting people who are nonspeaking or minimally verbal, hoping to help them communicate their needs and wants—often for the first time.

Here’s a glimpse of what this project entails.

Project Goals

Link families who have had success with spelling to access academic, social, and healthcare needs
Engage families in dialogue with newcomers for whom traditional speech and language services are not sufficient
Emphasize the concept of presuming understanding on the part of nonspeaking autistic young people and promote literacy from a young age
Educate caregivers about autism brain differences that affect spoken communication
Encourage families to explore new communication methods with support from experienced practitioners

Measurement of Success:

Number of new families introduced to spelling for accessing various needs
Number of families using spelling with some success
Engagement of professionals in training sessions
Distribution of spelling boards at no cost
Involvement of families, teachers, and therapists in implementing spelling

This project aligns with our core values of inclusivity, accessibility, and support. We are dedicated to making a tangible difference in the lives of nonspeaking autistic people and their families, ensuring that communication barriers do not hinder their access to healthcare, education, and social engagement. Together, we can break down barriers and create a more inclusive world for people with autism who need access to communication.

Thank you for being a part of our journey.

Empowering Connections: Sophie’s Potluck, A Special Journey

In this uplifting interview with Amy Hart, the driving force behind Sophie’s Potluck, we delve into the story of Sophie, a vibrant 14-year-old on the autism spectrum. Amy shares the inspiration behind starting Sophie’s Potluck and the unique experiences they offer to the community. From the adorable blue peacock logo to the diverse array of activities, this initiative aims to create a supportive and inclusive space for families. Discover how Sophie’s Potluck is fostering connections and providing opportunities for growth.

Tell us a little about Sophie.

My daughter Sophie is 14 years old and an 8th grader in the Pittsburgh Area. Sophie is on the autism spectrum and and can’t always communicate her needs.

Sophie’s signature bow

What drove you to start Sophie’s Potluck?

During the winter, I was looking for new activities that I could do with our friends. We typically paint monthly at Splat: A Make and Take Art Studio in the Pittsburgh Area, Pennsylvania. Everyone really enjoys themselves each time and my friend, John Novogurski, (who created and runs the Sophie’s Potluck webpage) and I thought it would be fun to do something more frequently. So we came up with the idea to run the website so we can notify people of our events, and let people register online.

Getting creative

I am always looking for new opportunities for Sophie to try and then ask friends to join us. Then I started thinking of ways that we could really start to explore some venues that we wouldn’t typically think of going to. With a little brainstorming and lots of support, I began emailing different places all over the city. We hope to grow from here.

Sophie’s Potluck logo designed by April Watt Little and Cheri Foote

Your logo is an adorable blue peacock cuddled next to a cooking pot. What’s the story behind this image?

I always have a bow in Sophie’s hair to keep track of her, and she loves peacocks. It started as a little inside joke, but John came up with the name because when you host a potluck, everyone brings something to eat. So with Sophie’s Potluck, we wanted everyone to bring their best! My friends April Watt Little and Cheri Foote collaboratively took the name and created the logo for us.

What kind of activities do you offer?

We work with all kinds of venues to bring a wide array of experiences to our special needs friends. Our first “official” event was a 45 minute zoo encounter, where the educators there taught us about arctic animals, and brought a few animals (some arctic, some not) out for us to see. It was a wonderful experience for our friends! Our upcoming events include a trip to a farm, we’re building our own terrariums, and creating our own bath bombs! Many other events are in the works.

Sophie’s Potluck Zoo Encounter

Are there opportunities to volunteer?

Yes! With some events, we are limited to the number of people that are able to participate. However, when we have the space, we LOVE to have volunteers come and join us.

Are there opportunities to host events?

Absolutely!! We are open to try anything! You can contact John or me on the Sophie’s Potluck website.

Any ideas or advice for parents and caregivers with autistic loved ones?

I think that we as parents and care givers are a village that need to learn from each other. I have also found that we just need to ask and many people are interested in helping us, as a group, gain new experiences and learn about the world around them.

Sophie’s Potluck not only serves as a platform for unique and enjoyable experiences, it also stands as a testament to the strength of community and collaboration. Amy’s journey is fueled by a desire to explore new possibilities for her daughter and others. As the initiative continues to grow, offering a range of activities and welcoming volunteers and event hosts, it becomes a shining example of the power of collective support. For parents and caregivers on the autism spectrum, Sophie’s Potluck offers not just events but a village of shared experiences, proving that together, we can enrich the lives of our loved ones and learn from one another.

Industrial door opening to a hallway with lockers

Aversive Practices are Abuse

We work to provide hope and encouraging information across all of our media, events, and articles. Occasionally, though, we become aware of negative news that compels us to respond. The recent case of educators abusing three young students with disabilities is some of that bad news. Over the past several decades of our work, we have been consulted on or informed about aversive practices in classrooms all around the state of Pennsylvania. Based on that experience, we are sharing some key points with you.

All families grappling with disability issues in school must rely on the people who call themselves professionals for guidance, and often trust that those in charge have ethics, high standards, and the knowledge needed to guide and educate students in their care. Unfortunately, as in any profession, there are people out there being paid to do their jobs who behave in unethical and sometimes criminal ways.

But how does anyone know what’s right, what’s wrong, and what to do if they get a bad feeling about a person, classroom, or school, especially when dealing with students who have communication difficulties? Here are some tips you could use in decision making about these situations.

Tips for Decision Making

1.) Trust your gut – often said in terms of protecting ourselves from victimization in things like street crime, this also applies to protecting children or adults with disabilities. It’s easier said than done, though. If you get a bad gut feeling, you could request classroom observation for starters to see how your child interacts with or responds to the adults in the room.

2.) Behavior is communication, so watch for school avoidance behaviors (stonewalling on the tasks needed to get out the door, bus refusal, not getting out of the car at drop off time, bed wetting, afterschool distress). Some of these things may be normal separation anxiety, but a pattern or intense behaviors may signal a scary school situation the person does not want to experience. People with regular transition issues who exhibit avoidance in going anywhere is one thing, but if these happen mainly or only regarding school, that is something to pay attention to.

3.) Listen and share with others – talk with parents, teachers, random school observers, and see if you get any inklings on classroom problems. Pay attention to anyone who comes to you asking for help from inside a school – sometimes politics get in the way, and you may be surprised to find adults who cannot or will not do the right thing in the face of obvious abuse, in order to protect their own self-interest and job.

4.) Insist on mandated reporter training on a regular basis in your school. You can do this via parent teacher organizations, via your own Individual Education Program (IEP) process, or sometimes by just requesting it from the district office or building principal. If this is done routinely already, ask to sit in and invite other parents and guardians to participate as well. Keeping this on everyone’s radar is the safest and healthiest thing for a school climate.

5.) Beware the “local autism expert” teacher who may have misled their colleagues about best practices. We have seen or heard of some appalling ones such as:

Overcorrection of a kindergarten student who wet their pants and was made to take them on and off repeatedly dozens of times in response on many occasions
Aversive tastes forced into someone’s mouth
Repeated “nagging,” taught as a technique, which was actually bullying students by loud and forceful repeated commands they could not process auditorily until they tried to leave, resulting in hands on restraints which escalated to panic fight or flight response
Forcing students with sensory issues hands into aversive textures that made them gag (handling goo is not an academic goal nor a skill needed in adulthood)
Public shaming in front of students and adults
Multiple staff repeatedly dragging a high school student by the arms to the bus in September after the student had been in a bus accident the previous June

Sadly, the list goes on.

When things are disrespectful, punitive, fly in the face of disability needs, and are something you would not tolerate as an adult, they are likely not educational and may be abusive.

Safe Educational Environments are Crucial

As advocates, we recognize the vital role that education plays in shaping lives. The recent distressing incidents of educators mistreating students with disabilities underscore the urgent need for vigilance and action. Our decades of experience have shown us that, despite the majority of dedicated professionals in the field, there are instances where some lack the ethics and standards necessary for this responsibility.

In navigating the complex world of education, especially for those with communication difficulties, it becomes imperative to trust your instincts, observe behaviors, and foster open communication with other stakeholders. The provided tips for decision-making serve as a guide for parents, guardians, and concerned individuals to actively engage in ensuring the well-being of students.

It is crucial to remain vigilant against practices that are disrespectful, punitive, and go against the fundamental needs of people with disabilities. By staying informed, advocating for mandated reporter training, and fostering a culture of transparency, we can collectively contribute to creating safer and more supportive learning environments for all.

What to Do if You Suspect Abuse

Contact the school’s administration about your concerns and request unannounced visits to the classroom.

Include mandatory training for reporting suspected abuse, and training for positive behavior supports in the Special Education Services section of your child’s Individual Education Program (IEP). Visit PaTTAN’s website for Customized Professional Development and Technical Assistance.

Email ra-pdespecialed@pa.org to alert the Pennsylvania Department of Education (PDE) about suspected abuse.

Students who are concerned about abuse in school can visit Safe2Say Something for information about making an anonymous report.

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

Who Will Do the Laundry? The Double Empathy Problem

The Double Empathy Problem

“The most important thing in communication is to hear what isn’t being said.” – Peter Drucker

The double empathy problem posits that difficulties in social interaction are not solely the responsibility of the autistic person, but also result from a lack of understanding and empathy from people who are not autistic.

Explaining the double empathy problem poses its own challenges, so I’m quite literally illustrating the concept with a question: Who will do the laundry?

Who Will Do the Laundry?

Autistic grief is authentic, deeply felt, almost tangible. And it can manifest in a way that can be baffling to non-autistics. We have seen this when someone on the spectrum receives news of the loss of a parent or caretaker. “Who will do the laundry?” is a type of question a person on the spectrum may ask. It can seem pragmatic, almost unfeeling, but it is a distilled expression of grief concentrated into an overwhelming question.

Difficult to explain, so I’ll illustrate.

Years ago, a close friend who is not on the autism spectrum talked about the loss of his mother to breast cancer when he was 11 years old. Her death was an abrupt devastation. When he spoke about the experience, he formed descriptions of being snuck into her hospital room for brief visits, and even with her deteriorating state, he thought that she would eventually come home.

She never did. But the feeling of her possibly returning lingered. “I remember the moment I truly understood that she wasn’t coming back. I went to the basement to find my father standing next to piles of laundry. His head was bent. He was sobbing. And I knew that I would never see her again.”

Who will do the laundry?

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

This is how the question Who will do the laundry? feels.

An Overwhelming Question

Who will do the laundry? is an expression of grief concentrated into a plea that really captures the questions, “What is life without them? How do I go on?”. When an autistic person demonstrates grief in this concrete form, a non-autistic person may perceive a lack of empathy. In turn, the autistic mourner may feel that others have no empathy for their despair, depending on their reaction to the overwhelming question.

My friend’s description of the laundry room scene illustrates his father deeply grieving with echoes of Who will do the laundry? quietly implied. In both cases, it’s not about the laundry. It is about the loss.

Tammi Morton, Director of Operations