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Wellness

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photo by Kurt Leggard,
Mark Biondi , Executive Director of Luv Michael, Dr. Dimitri Kessaris, co-founder Luv Michael
Lisa Liberatore, MD Founder, Luv Michael 
Father Alexander Karloutsos, Pastor of the Dormition of the Virgin Mary Cathedral. 

What I Learned by Listening to Autistic Adults, Families and Researchers

I attended the Luv Michael conference with one goal: to listen. I wanted to better understand what families raising autistic children experience, what autistic adults want us to understand, and whether all the autism research we hear about is actually making a difference in people’s everyday lives.

photo Kurt Leggard

I left thinking about something much simpler than genetics or laboratory research: independence. What does independence look like when going to the dentist can feel overwhelming? What happens when an autistic child becomes an adult? What if someone can speak beautifully in front of an audience, yet struggles privately with anxiety, sensory overload or completing everyday tasks? Most importantly, are we listening to autistic people themselves? Those questions stayed with me.

There Is No Single Autism Experience

photo Kurt Leggard, Maria Kontaridis, PhD 
Executive Director of MMRI 

What Can Genetics Tell Us About Autism?

Autism can have a strong genetic component, but that does not mean scientists have discovered one “autism gene.” Researchers are studying many different genetic variations. Some may have relatively small effects, while rarer genetic changes can have larger effects. Some are inherited, while others occur spontaneously, known scientifically as de novovariants.

photo Kurt Leggard

What surprised me was how much genetics can tell us and how much it still cannot. Genetic information may help researchers identify biological pathways, understand certain medical risks and give some families useful information. It cannot tell parents exactly who their child will become or predict someone’s personality, abilities, independence or future. It also cannot be used to simply blame one parent.

Environmental influences are also being studied, including parental age, premature birth, pregnancy complications, maternal health, certain prenatal exposures and air pollution. One point was emphasized: association does not mean causation.

The presentation also addressed vaccines. Current scientific evidence does not support vaccines as a cause of autism. Researchers continue to investigate infections, immune responses and other environmental factors that could potentially interact with genetic susceptibility. Some of those ideas remain hypotheses requiring much more research. I appreciated hearing that distinction. Science should be able to say, we don’t know yet.

A Trip to the Dentist Changed How I Thought About Accessibility

One of the simplest examples of the day may have taught me the most.

A dental professional described caring for an autistic patient who had difficulty tolerating a traditional dental appointment. Think about the experience: bright lights, unfamiliar smells, equipment noises, water, vibrations, someone touching your face and being asked to remain still. Many of us find the dentist uncomfortable. Imagine experiencing those sensations with heightened sensory sensitivity while struggling to communicate what is bothering you.

Photo Kurt Leggard, David Forlano, DDS 

The dental team didn’t force the patient through a traditional appointment. They slowed everything down. One visit might involve sitting in the chair. Another might introduce the overhead light. Instruments, sounds, water and vibrations were introduced gradually. Some appointments were extremely short.

My first thought was how much patience that must require. Then I realized I was thinking about it the wrong way.

The patient wasn’t failing to adapt to healthcare. Healthcare was learning how to adapt to the patient.

That is accessibility.

Listening to an Autistic Adult Changed the Conversation

Photo Kurt Leggard, David Cooke , Autism Advocate, Luv Michael Employee 

Research can explain a great deal. Hearing an autistic adult describe his own life gave the research meaning.

He spoke openly about executive functioning, anxiety, sensory overload and difficulty making decisions under pressure. He explained how someone can know that something needs to be done yet struggle to make their mind and body begin the task. He also described a period when managing his apartment, maintaining responsibilities and working became overwhelming.

Photo Kurt Leggard

What struck me was that many people meeting him might never recognize those challenges. He speaks for himself. He teaches. He advocates. He participates in his community. His disability can sometimes be invisible. That doesn’t mean the challenges disappear.

It also changed the way I thought about independence. We often describe independence as needing no help. Most of us rely on other people in some way. We call friends, ask family members for advice, hire people to help us and lean on our communities. Support does not erase independence. For some autistic adults, the right support can make greater independence possible.

The speaker talked about finding community and mentorship. He began teaching classes about things he enjoys, including Montauk, chess and board games. He also became an advocate, even speaking at a public meeting about housing and what independence means from his perspective as an autistic adult.

His voice mattered.

What Happens When Someone Cannot Tell Us What They Need?

He raised another question that has stayed with me: What about autistic people who cannot stand at a microphone and explain what they need?

He spoke about wanting to advocate for people with higher support needs, including nonspeaking autistic individuals and people who communicate differently.

Imagine knowing something hurts, feeling frightened or overwhelmed, yet not being able to put that experience into words other people understand. A behavior we interpret as “acting out” may sometimes be communication. It could mean pain, fear, sensory overload or simply, “Something is wrong and I don’t know how to tell you.”

That is why communication research matters. It is also why listening matters.

His Dreams Sound Familiar

Photo Kurt Leggard, Chef Jack Formica, Jenna Carballo, resident of Luv Michael, Lisa Liberatore, MD Founder, Luv Michael 
Photo Kurt Leggard

Those aren’t abstract questions. They are questions about someone’s future.Autism Research Has to Follow Children Into Adulthood

Historically, much autism research has focused on children. Autistic children grow up.

Researchers are increasingly examining adult health, housing, employment, communication, relationships, safety and aging. They are also studying medical issues that may occur alongside autism, including gastrointestinal problems, sleep difficulties and epilepsy.

Researchers from the Masonic Medical Research Institute, or MMRI, also shared some of the work happening in their laboratories. Scientists can take cells from an individual and reprogram them into stem cells, which can then be developed into different types of cells for study. Researchers can create three-dimensional structures called brain organoids, laboratory models that allow scientists to study aspects of how brain cells develop and communicate.

Photo Kurt Leggard

If researchers identify a particular genetic change, they may be able to study how that change affects cells and biological pathways. That creates another question: Can understanding what is happening biologically eventually lead to an intervention that improves someone’s life?

MMRI researchers discussed projects involving specific genetic mutations, possible interactions between environmental exposures and genetic susceptibility, the gut microbiome, adult quality of life, and PANS and PANDAS. The projects are very different, which reinforces one of the biggest lessons of the day.

There isn’t one autism question to answer.

When Does Autism Research Really Matter?

After listening to the presentations, I don’t think the goal can simply be finding another gene or publishing another study.

Photo Kurt Leggard

Research matters when it reaches people.

Can someone communicate that they are in pain? Can someone receive dental care without being traumatized? Can an adult find meaningful employment? Can someone live safely in their own home? Can families get better answers? Can a nonspeaking person have a reliable way to communicate what they need? Can an autistic adult grow older with dignity, support and choices?

Those are outcomes people can feel.

Photo Kurt Leggad

I Came to Learn About Autism. I Left Thinking About Humanity.

I did not attend this conference as a scientist, physician or autism expert. I attended as a journalist, a mother and a person who wanted to understand.

There is still so much I don’t know. There is also so much science doesn’t know. What became clear to me is that autistic people cannot be reduced to statistics, diagnoses or debates about what causes autism. They are children who grow into adults. They are employees, teachers, neighbors, advocates, sons, daughters, friends and community members. Some may need a little support. Others may need significant lifelong support.

Photo Kurt Leggard

Every person deserves to be seen. Every family deserves to be heard. Every person deserves the opportunity to communicate in whatever way works for them.

Research is important. Housing is important. Employment is important. Healthcare is important. Perhaps the most important thing we can do first is listen.

That is where understanding begins.

Real Talk. Real People. Real lives.

other articles to read: https://hamptonsmouthpiece.com/luv-michael-real-families-and-a-community-that-said-yes/

I Ain’t Scared of You MF’s

Photo: Kurt H. Leggard

Joy Can Exist Right Alongside Disappointment

“Is This Worth Disturbing My Peace?”

“I’m Not Saving Joy for Later”

I’m not handing my joy over to anybody else.

I thought I understood the word microaggressions. Then I watched LIMITLESS: The Dr. Chester Pierce Story and sat down with director and producer Gloria Respress-Churchwell during the Martha’s Vineyard African American Film Festival.

LIMITLESS
The Dr. Chester Pierce Story
photo credit: Butter Pecan Productions

Dr. Chester Pierce was a Harvard-trained psychiatrist and physician, athlete, researcher, educator, mentor and humanitarian. His work took him from Harvard to Antarctica and even Sesame Street. Yet as impressive as his accomplishments are, I found myself thinking less about his résumé and more about the experiences that shaped the man.

What was it like to repeatedly enter spaces where he was the only Black person? How did those experiences influence his understanding of racism and human behavior? Most importantly, what can his work teach all of us today?

That’s where my conversation with Gloria became much bigger than a discussion about a documentary.

It became Real Talk for Real People.

Before He Named Microaggressions, He Lived Them

To understand Dr. Chester Pierce, Gloria told me, you have to understand his parents. His mother believed deeply in community and service, while his father worked at the Nassau Country Club and had limited formal education but tremendous awareness. People sometimes spoke freely around him as though he weren’t there. He listened, absorbed what he heard and brought those lessons home to his sons, helping them understand how to navigate spaces that weren’t always designed to welcome Black men.

All three sons eventually attended Ivy League schools. Chester chose Harvard.

Some of the lessons his parents taught had nothing to do with academics. Gloria shared that Pierce was taught never to pose for a photograph with his arm around a white woman. That may sound unimaginable today. For a young Black man of his generation, it was a lesson about safety. Those experiences matter when we consider the man who would eventually give us language for something many people experienced but couldn’t always explain.

What Exactly Is a Microaggression?

This was the part of my conversation with Gloria that I really wanted to understand.

I told her I’ve always struggled somewhat with the word micro. There can be nothing small about repeatedly experiencing something that makes you feel as though you don’t belong.

Gloria explained that blatant discrimination is usually easier to recognize. A racial slur is obvious. Segregation is obvious. A microaggression can be much more subtle. It might be a comment, assumption or behavior that communicates something about a person’s race or identity without anyone explicitly saying it. Sometimes you leave the interaction wondering:

Did that really happen? Did they mean it that way? Am I reading too much into it?

The person on the other side of the interaction may be thinking something entirely different:

That’s not what I meant at all.

That is where I believe we have an opportunity for conversation.

Understanding microaggressions doesn’t require us to assume that every uncomfortable interaction is racist, nor does it require us to assume that every person who commits a microaggression intended to hurt someone.

It asks us to consider something more nuanced:

Can our intentions be different from the impact of our actions?

Two People Can Experience the Same Room Differently

I shared something with Gloria that I’ve experienced many times. I can walk into a room filled almost entirely with white people and immediately recognize that I’m the only Black person there. A white friend can walk into that same room beside me and never notice. Neither one of us has done anything wrong. We’re simply experiencing the same room through different histories. My awareness comes from having spent a lifetime noticing when I’m the only one. My friend may never have needed to develop that awareness.

Pierce knew that experience well.

One image in LIMITLESS shows him with his Harvard football teammates. He is the only Black man. During his junior year, Harvard traveled to the University of Virginia to play football in the Jim Crow South. Pierce encountered segregation that many of his teammates from the North had never personally experienced. His teammates could enter through the front. Pierce could not. When he was required to use another entrance, Gloria told me his teammates followed him.

I loved learning that.

They couldn’t experience racism exactly as Pierce did, but they could recognize that their friend was being treated differently and choose how they responded. To me, that’s an early example of something we talk about frequently today: allyship. Sometimes allyship isn’t knowing exactly what to say. Sometimes it’s simply deciding not to leave someone standing alone.

When a Small Moment Has a Larger Impact

This conversation became personal for me. My husband and I moved to Sag Harbor year-round to raise our daughters in 2001. We loved the community, but our experience also came with challenges. Our oldest daughter was one of only two Black students in her grade. In high school, she was earning grades in the 90s. When students were being considered for AP English, the teacher who would teach the class told us she couldn’t recommend our daughter because she would be the “weakest link.” I remember being confused.

If her grades demonstrated that she could handle the work, why wasn’t she considered ready?

I can’t tell you what that teacher intended. I don’t know what was in her mind, and I think that’s important to acknowledge.

I can tell you about the impact.

My husband and I worried that our daughter wouldn’t be supported in that classroom, so we decided not to place her in the class.

At the time, we believed we were protecting her. Looking back, I can also recognize that her classmates who took AP courses received academic preparation she didn’t have before entering college.

That’s one way I understand microaggressions today.

The moment itself may appear small to someone on the outside, but sometimes that moment influences a decision, the decision affects an opportunity, and the impact continues long after the original conversation has ended.

“I Didn’t See It”

One of the most difficult parts of talking about microaggressions is that another person may genuinely not see what you see. I’ve heard, “I didn’t see that.” Maybe they didn’t. The problem comes when “I didn’t see it” becomes “therefore it didn’t happen.”

There’s a difference.

Gloria and I kept returning to one word during our conversation: empathy. Empathy doesn’t require us to have identical experiences. It doesn’t even require us to immediately understand everything someone else is feeling.

It asks us to remain curious.

  • What happened?
  • Why did that affect you that way?
  • Is there something about this experience that I’m not seeing?

Those questions create room for conversation instead of immediately putting two people on opposite sides.

Racism, Mental Health and Resilience

Pierce understood that repeated experiences with racism could have psychological consequences, which made me wonder about something much more personal.

What did all of this do to him?

Gloria couldn’t definitively answer that question. Pierce wrote and spoke about racism, mental health and microaggressions, but she hadn’t uncovered much where he explicitly discussed his own emotional wounds. That left us wondering whether a Black psychiatrist of his generation would have felt comfortable publicly acknowledging that vulnerability.

We may never know.

What we do know is that Pierce continued moving forward.

I asked Gloria whether our celebration of Black resilience can sometimes cause us to overlook why that resilience was necessary in the first place.

Her answer offered an interesting perspective. Racism is something another person can do to you. Resilience is something you can control.

Pierce couldn’t control another person’s prejudice, but he could decide whether it would determine the boundaries of his life.

He became a physician and psychiatrist, conducted research in Antarctica, contributed to Sesame Street and mentored generations of people.

Still, resilience doesn’t necessarily mean an experience didn’t hurt.

It means you found a way to keep moving.

Why This Conversation Still Matters

Nearly 60 years after Dr. Chester Pierce gave us the language of microaggressions, we’re still using it because we’re still experiencing them.

That doesn’t mean we haven’t made progress.

Gloria pointed to mental health as one example. Conversations about therapy, anxiety, trauma and emotional wellness are far more open today than when Pierce entered psychiatry, including within Black communities.

There is also greater awareness of how our different backgrounds can shape the way we experience the same schools, workplaces, neighborhoods and social spaces.

Maybe the next step isn’t arguing over whether every interaction qualifies as a microaggression.

Maybe it’s becoming more comfortable asking questions.

Understanding a microaggression doesn’t require a white person to feel guilty for being white, just as sharing an experience with racism doesn’t require a Black person to prove what another person intended.

  • There is room between those two positions.
  • That room is where listening happens.
  • It’s where someone can say, “I didn’t realize you experienced it that way. Tell me more.”
  • It’s where another person can explain without automatically assuming the listener is incapable of understanding.
  • It’s where empathy begins.

That is what stayed with me after watching LIMITLESS: The Dr. Chester Pierce Story and talking with Gloria. Dr. Chester Pierce gave us more than a word. He gave us language that can help us talk about experiences that are sometimes difficult to see, explain or understand. Nearly six decades later, perhaps the goal shouldn’t simply be to decide who is right or wrong. Maybe we should start by trying to understand what the other person sees.

That’s a conversation worth having. Real Talk. Real People.

©hamptonsmouthpiece
©hamptonsmouthpiece
©hamptonsmouthpiece

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Aging with Confidence and Purpose! This is 60!

What does 60 look like?

After my mother died in 2017 at the age of 69, I made a decision that changed my life. I wasn’t going to spend the next chapter simply growing older. I was going to become healthier. That was the beginning of my wellness journey. It wasn’t about losing weight or looking younger. It was about deciding how I wanted to live the rest of my life. I started eating differently, moving my body more, making sleep a priority, protecting my peace, and finally putting myself first. Looking back now, I realize this is the foundation of what 60 looks like for me, not chasing youth, but choosing health, strength, and purpose. I wrote about that journey in Putting Me First: How My Wellness Journey Began and Where It’s Headed, and I now understand it wasn’t just about improving my health. It was about reclaiming my life.

Not because I’m trying to compete with someone who’s 30 years younger than me, but because I genuinely like the woman I see in the mirror. That wasn’t always true. Learning to love the reflection staring back at me has been its own journey, something I wrote about in Real Talk: Loving What You See in the Mirror. Confidence doesn’t come from looking younger. It comes from finally accepting yourself.

It’s continuing to learn, to laugh, to dream, and to believe your best chapters may still be ahead of you. That’s exactly what inspired me to write Youth Is a Whole Mood.

“Wow… that’s so young.”
Maybe that’s because it is.
Or maybe it’s because our definition of aging has changed.