All About Autism

This week, I am continuing our discussion of some of the 2022 research that provided me with new insights into the many facets of autism. The science of Autism is constantly evolving.  

Parental Genetics  

• Integration of environmental factors and genetics is recommended to allow for a more comprehensive understanding of ASD and its impact on individuals over the course of their lives.  

Environmental Factors  

• Studies indicate that females diagnosed with ASD have a greater chance for genetic mutations.  
• Females with ASD are more likely to camouflage their symptoms in order to fit in with children whose development is typical. This makes it more difficult to provide early diagnosis and treatment options.  

Underserved Communities  

• Racial and ethnic biases that exist both in research and patient care can hinder swift ASD diagnosis and intervention among often unrepresented populations.  
• Parent training is being developed to be culturally adapted and delivered by physicians who have a strong background in the needs of specific cultural groups.  
• More intense community engagement and a focus on inclusion is needed to serve a wide range of individuals with autism and their families.  

Disorders Associated with ASD  

• Genetic markers often associated with ASD are also tied to developmental conditions such as ADHD, intellectual disability, and obesity.  
• Individuals diagnosed with ASD have a greater likelihood of developing anxiety, GI issues, epilepsy.  
• 18% of the general population is affected by anxiety. 40% of children with Autism and 50% of adults with Autism experience some sort of anxiety disorder.

Over the next few weeks, I thought I would share some of the highlights in Autism Research in 2022.

Early Identification

• CDC updated developmental milestones to track what 75 percent of children can do by certain ages instead of 50 percent, which was typical in the past. New research reinforced the need to focus on milestones and the importance of early intervention.
• The Baby Siblings Research Consortium showed that maternal education levels and early gestures are important predictors in language skills, which are important predictor of the autism spectrum disorder (ASD) diagnosis.

Parent-Mediated Interventions in Training

• A review of 30 studies showed promising results from parent mediated interventions, but more research is needed.
• Parent mediated interventions can be used for teaching everything from core autism symptoms to self-care tasks (toothbrushing).

The Brain

• The greatest differences in gene expression in the brain are in sensory areas like the visual cortex, which may explain why so many persons with ASD have sensory processing issues.
• The visual area (the occipital cortex) was enlarged at young ages more so in children who have siblings who have a diagnosis of ASD, demonstrating that genetic inheritability plays a role in brain activity involved in sensory processing in families.
• The amygdala (another brain region) may relate to anxiety with persons with autism. Certain areas of the amygdala are different in size and may explain variability in anxiety.
• It seems that the ability to make gains or show potential for change over time is correlated with differences in brain structure. It is established that persons with ASD experience higher levels of anxiety, which appears to be linked to insistence on sameness.

Next week I will provide additional information about parental genetics, environmental factors, underserved communities, and the variety of disorders often associated with ASD.

I have been writing for several years about the benefits of exercise and how exercise, when developed as a life skill when a person is young, can provide lifelong benefits. We know the benefits of exercise as they relate to combatting disease, managing weight, stabilizing mood, boosting energy, and helping people get good quality sleep. The need for exercise is more important than ever now that people are striving to include their mental wellness as part of a healthy lifestyle.

The onset of COVID-19 and subsequent shutdowns pushed many into a state of social isolation. Children and adolescents were especially impacted, and we are seeing an increase in mental health problems among young people. According to a recent Wall Street Journal article, depression is the second-most prevalent mental illness among children and adolescents.

While past research has indicated that exercise can improve and even alleviate symptoms of depression in adults, there has been little research centered on whether exercise impacts the mental health of children and adolescents. A breakthrough study released by international researchers in JAMA Pediatrics this week supports the idea that moderate physical exercise does in fact help decrease depressive symptoms in children, especially those age 13 and older who participate in activities such as team sports and aerobics, including running and jumping, for an average of 50 minutes three times a week over the course of 12 weeks or less.

Exercise can be fun and engaging, and helping children discover the physical activities that they enjoy most can increase the chances that they will continue to keep moving. Although a challenge for some, team sports allow children the opportunity to socialize and develop strong bonds with their peers, which helps foster feelings of belonging.  

While additional research is still needed to further support the benefits of exercise in children and adolescents, this study shows that exercise, along with a well-balanced lifestyle and support from a network of family, friends, and caregivers, can help young people combat depression naturally and exhibit resilience during some of life’s most challenging times.

On a personal note, Ryan started running at a very young age. You can see him participating at the Charlie Barber Children’s Run at age 2. Yes, he really started running when he was 1. There was a children’s mini marathon at the Peninsula when he was 9 and that got him off to a good start. He participated in the McDowell Cross Country with assistance and support from the coach. When we joined LECOM, you could find him on the treadmill every day.         

Today, we are at Planet Fitness for a 60-minute workout on the treadmill. Exercise is a regular part of his life and I feel that because he had an early start, he views it as a “daily” activity. I have always believed that running helps decrease his repetitive behaviors and reduces some of his anxiety. I can’t imagine a day for him without exercise!

President Biden recently signed into law The Consolidated Appropriations Act, 2023, which contains some significant victories for the community of persons with Developmental Disabilities and Autism.  These include:

• The first expansion in a decade of the Autism and Developmental Disabilities Monitoring Network, which works to understand the number and characteristics of people with Developmental Disabilities and Autism, racial and ethnic disparities, and access to services for those who live in various areas of the country.  They are also expanding monitoring of outcomes for young adults transitioning from school age to adult services.

• Increased funding to provide more training opportunities for future health professionals to help improve access to high quality health care for persons with Autism and Developmental Disabilities.

• Supports implementation -focused research that targets caregiver-mediated interventions, including caregiver skills training.

• For the first time, supports ongoing work at the National Institute on Aging to understand how autism spectrum disorder (ASD) affects the aging process.

• Increased funding for vocational rehabilitation programs, which assist persons with Autism and developmental disabilities to receive training and resources to obtain competitive, integrated employment

Thanks goes out to Autism Caucus co-chairs Reps. Chris Smith (R, NJ) and Mike Doyle (D, Pa) as well as Senators Amy Klobuchar (D, MN), Thom Tillis (R, NC), and Robert Menendez (D, NJ) who have championed these efforts for many years.

To learn more about this milestone and the positive changes it will bring, please visit https://www.autismspeaks.org/advocacy-news/milestone-wins-autism-community-federal-bill.

As Christmas is now only a few days away, I began thinking of Christmas throughout the years.
Christmas was always an important day in the Barber household.

Mother loved decorating the house for Christmas, and she would take days to
complete her decorating.

And, yes, we had lots of Christmas birthdays. Joe’s birthday is Christmas, mine is the 27th
and JoAnne’s was the 3rd. Since we were close in age, we always had one large birthday party and for many years it was at Evan’s Skateland on West 8th
Street.

On Christmas day we would go to Church at St. Peter’s after opening our presents. Then it
was on to, as my father called it, the Barber ranch/family home. Santa (Uncle John) always made an appearance. We believed in Santa until we were quite old as we knew that it wasn’t possible for our parents to buy us birthday and Christmas presents!

Once we were teenagers, we began going to Midnight Mass and then on to our great friend,
Louise Behringer’s home for brunch. Looking back, I can’t even imagine brunch at
1:30 a.m.! But we did!

Many traditions are carried on as I celebrate with Ryan during the holidays.

Ryan has experienced every kind of Christmas imaginable. Regardless of the weather, we have been fortunate to spend this special day surrounded by family and good friends. Christmas Eve always
finds us at St Patrick’s with Aunt Jeanne.

When Ryan was just 3, I explained to him that, just as Jesus received 3 gifts from the Magi, he would as well. So, over the years he grew up knowing that there would be 3 gifts under the
tree Christmas morning.

What are some Christmas traditions for you and your family? Wishing you a very happy holiday season and a joyous near year!

Henry Ford said, “Coming together is a beginning. Keeping together is progress. Working together is success.” This quote is especially impactful to me as I think about the wide range of stakeholders who have helped mobilize the mission of the Barber National Institute since its very beginning in the early 1950s. Even before Dr. Gertrude Barber established the first class for children with disabilities, she had support from a group of parents who saw the promise in what Dr. Barber was doing to help provide critical services for children with disabilities.

Today, our programs have expanded in ways that seemed impossible at one time. As I think about the success of our programs, I reflect on who is in my village. This year, we had so many key stakeholders come together to make the following possible:

“Christmas in the City” Barber Ball, which took place on Saturday, December 10 at the Bayfront Convention Center, marked 50 years of this annual gala that benefits programming at the Barber National Institute. Thanks to the efforts of our chair couple Tim NeCastro, President and Chief Executive Officer at Erie Insurance, and his wife Lisa NeCastro, and over 1,200 guests who attended, we were able to raise funds for our pool renovation project, which is expected to start in June 2023. 

Operation Warm delivers winter coats to young children in need in our communities at no cost to families. With the motto of “more than a coat”, the nonprofit organization believes that it is important to focus on meeting the needs of the whole child. A winter coat provides physical warmth and protection just as it proves confidence and hope for a brighter future. Our partners at PNC Financial Services have collaborated with Operation Warm to help the Elizabeth Lee Black School obtain coats for our students in need.  I would like to offer a special thanks to Jenny Weigold Geertson, Vice President and Director or Client and Community Relations for the Northwestern Pennsylvania Market of PNC, for her work in coordinating this year’s delivery of winter coats for our students.

The Kahkwa Club is working to enrich the lives of disadvantaged students at the Elizabeth Lee Black School this holiday season through a gifting program. Thanks to the generosity of Kahkwa Club members, students will receive gifts they request. I want to extent my gratitude to the Board of Governors at the Kahkwa Club along with Kal Darres, General Manager, and Hillary Kaczay, Director of Administration/Membership, for supporting and coordinating this gifting program.

Thanks to everyone who supports the diverse programming for both children and adults at the Barber National Institute. It really takes of village to accomplish great things!

While the holiday season is a time of joy and celebration for many, some families struggle with food insecurity and the stress that comes along with it. The staff of the Elizabeth Lee Black School established a food pantry several year ago as a way of supporting families of students who could benefit most from having access to nutritious and non-perishable food items.

Through the graciousness of Barber National Institute staff who donate toward the food pantry each year, the Elizabeth Lee Black School is able to create several hand-crafted baskets containing a wide assortment of food items, including cereal and bread, soup, pasta and sauce, peanut butter and jelly, canned vegetables and fruits, juice, and snack bars.  

There is no shortage of generosity being expressed by staff who want to support students at the Elizabeth Lee Black School and their families. An outpouring of kindness from our remarkable staff is something that is noticeable throughout the year, but it is especially apparent during the holiday season.

Our staff really embody the values of the Barber National Institute, and I am so proud of everything our staff members are able to accomplish by using these values to navigate their efforts both in and outside the organization!

In addition to supporting students and their families by offering food baskets during the holidays, the Barber National institute, through the Employee Service Fund, provides financial support to 501(C)3 nonprofit organizations nominated by staff each year. Some of the charities receiving donations include the United Way of Erie County, ExpERIEnce Children’s Museum, Hope on Horseback Therapeutic Riding Center, Special Olympics of Pennsylvania, and Sisters of St. Joseph of Northwestern Pennsylvania.

Merry Christmas!

The four weeks leading up to Christmas are always quite busy, which means it can be very easy to forget about stopping to reflect on all there is to be grateful for during this time of year.

As we approach the next four weeks, I want to provide some of the things I am most grateful for:

• The gift of family, good health, and the opportunity to give back to the community I love.

• The caring and compassionate nature of those around me who have a way of lifting my spirits during Christmas and all year round.

• The dedicated staff of the Elizabeth Lee Black School who see the full potential of all our students.

• The beauty of the season, from Christmas trees and lights to the smiles I see on children’s faces as they enjoy the magic of the holidays.

• Growth, whether it be personal or professional, that helps me realize my own ability to adapt and look at challenges as a possibility of learning something new.

Wishing you and your family peace and joy in the coming weeks. What is on your list of things you’re grateful for this holiday season?

As Thanksgiving approaches (and the Ladies Only Luncheon is history), I always take a moment to think about what I am thankful for. I’ll share a few of my thoughts…feel free to add on!

I am thankful for:

• Ryan, who has taught me much, and helps me be a better person each day
• My family and friends who have always been there for me in good times and those that were challenging
• The creative, committed, and enthusiastic staff members who work with our children, adults, and their families
• The children and adults themselves, who remind me every day that life is precious, and that each of us is given special gifts to share with others
• Everyone who supports the work and the mission of the Barber National Institute. The dreams of Gertrude Barber continue to grow and flourish
• A country founded on the values of freedom, liberty, and justice for all
• The thousands of health care workers who supported us through the pandemic

The list could go on and on…..

Happy Thanksgiving!

I can’t believe it!  Our Ladies Only Luncheon is Saturday, and we are celebrating our 20^th anniversary! 

It seems like yesterday that Amy Borden, a parent of one of our students came to me and offered to sponsor a luncheon “For Ladies Only”.  She had chaired such an event for her daughter’s former school in Boston, and it was a great success.  Amy and a few of her friends were interested in doing this for us if we agreed.   Of course, I immediately said yes!    And that was the beginning of the luncheon.  We scheduled it for the Saturday before Thanksgiving at the Kahkwa Club. We hoped for 75 guests the first year as we were quite late in beginning our plans at the end of September.  To our surprise, we had 150 guests!  Within 5 years we had a “sold out” event and have ever since. The success of the Ladies Only Luncheon can be attributed to many: 

The women who worked on the planning committees over those years.  When I say worked, they certainly have!  

The chairwomen, who graciously took on this role.

The patrons. Usually, we have about 170 women who agree to support the luncheon with their additional donation.

The corporate sponsors, many of whom come back every year.

The gift basket donors who generously donate a basket valued at $300+.  Traditionally, we have over 35 baskets valued at $300 to $1,000, which can be won with a $1 ticket.  I daresay our gift basket raffle is the best in town! 

The ladies who attend to support the children of the Barber National Institute. 

The Kahkwa Club, which creates a welcoming ambiance  and a sumptuous lunch for our guests. 

The list could go on and on so I will close by saying THANK YOU to everyone who has made these 20 years so successful! It truly has become a tradition and the Kickoff for the Holiday season. 

THANK YOU!