All About Autism

The question of what causes autism has been in existence for as long as doctors have been diagnosing people with autism. While we can’t pinpoint one specific cause of autism, we’re getting closer to identifying the factors that may increase the risk of children developing autism. One factor is a woman’s diet while she’s pregnant.  

A team from the University of Texas Health Science Center at San Antonio, including Dr. Sharon Fowler, a UT Health San Antonio adjunct assistant professor of medicine, recently published a study that suggests there is a link between boys being diagnosed with autism and their mothers drinking diet soda or a similar amount of artificial sweetener, including aspartame, daily during pregnancy or while breastfeeding.  

Some key findings from the study: 

• Boys whose mothers drank one or more diet sodas or products containing similar amounts of artificial sweeteners per day were over three times more likely to be diagnosed with autism than their typical male peers. 
• While there is link between the consumption of diet soda during pregnancy and autism in boys, no significant link was found in girls whose mothers also consumed similar products on a daily basis during pregnancy.  

More research on this topic is needed, but this study provides a stronger reason to delve deeper into how diet could play a role in contributing to the development of autism. With time, more research will be done to develop a more thorough understanding of the potential risks associated with consuming diet soda and products containing artificial sweeteners as well as genetically modified foods, processed foods, and foods containing antibiotics and other additives.  

At the Elizabeth Lee Black School, we’re always looking for new ways to engage our students. We recently invited Jim Donovan, M.Ed., for drumming training for our staff who work with students with disabilities. Jim is an award-winning musician, teacher, motivator and founding member of the multi-platinum band, Rusted Root from 1990 to 2005.  He is also a full-time instructor at Saint Francis University and regularly offers workshops in the United States and Europe.  

Jim was at our school a few years ago for an in-service program and he was very well received.  As that was pre COVID and we have many, many new staff we thought that it was time to bring him back. We are so glad that we did!  The goal of the training was to learn how to use rhythmic and musical strategies to elicit increased attention to task, support nonverbal expression and to encourage socialization.  Some givens: non musicians can effectively use rhythm and sound with their students, prior musical experience is not necessary, and percussion is not necessarily loud and disruptive.  

So, what is percussion intervention?  It’s a technique that uses easy to learn percussion approaches, instruments, and methods as a way to elicit a desired behavioral response.  This is done in an atmosphere of safety, acceptance and positivity.  

Access a copy of a research article that Jim Donovan and his colleagues wrote on the positive impact of percussion and distance learning has on attention-to-tasks in children with autism. 

We have been collecting drums since Jim was last year but utensils and materials that you have at home can be used.   Coffee can serve as a perfect example.    

The question I always ask when new techniques are suggested for working with children with disabilities is, “What if any research has been done to support the technique?”  Yes, in 2010 a study involving 41 students with a diagnosis of ASD was conducted.  For each participant, an initial measure of attention to task in seconds was recorded.  Attention to task was measured during each therapy session and the percentage change from the baseline measure was calculated for each session.  The overall result for all participants was an impressive positive average percentage.  I would like us to consider conducting a replication study in the upcoming months.  I will be discussing this with Mr. Donovan and our team.  

A great way to kick off the start of our 71^st year! 

“I can do things you cannot, you can do things I cannot. Together we can do great things.” These are the words of Mother Teresa.  

As we approach Founder’s Day on September 22, which is the celebration of Dr. Gertrude Barber’s life of service and profound impact, I think about how she possessed a very similar approach to Mother Teresa.   

Dr. Barber saw the challenges faced by people with disabilities and their families. While she knew she could help bring hope and opportunity to these children and adults, she also knew that collaboration was key to ensure that her vision came to life. She could not do it alone. 

She worked with families, schoolteachers, politicians, church leaders, and partners across the Commonwealth, country, and world to mobilize her vision of making dreams come true for countless people who were denied access to an education, fair employment, and a high quality of life. 

Today, in honor of Dr. Barber’s legacy, we too continue to collaborate with members of our community both near and far to create greater independence for those we serve.  

Collaborations continue in the form of ongoing partnerships with well over 20 school districts, artists and musicians who offer their talents in the form of art and music therapy for our students, a wide variety of corporate partners and government agencies who partner with us to provide grant opportunities that allow us to expand technology and programming, as well as countless families, friends, and remarkable supporters we’ve been so fortunate to gain over the years.  

Our challenge today is to continue Dr. Barber’s vision and be change agents as we work to expand opportunities for children and adults with disabilities not only in our community but throughout the world. 

This week, we celebrate the vast contributions of Direct Support Professionals (DSPs) by highlighting the incredible work they do. DSPs should be considered heroes for all they do to create real change in the lives of people with disabilities and their families.   

DSPs are the frontline workers who are both caregivers and advocates for people with a wide range of abilities and needs. Mornings, evenings, weekends, and holidays you will find them in our group homes.  This special week we have an opportunity to be their advocates. We can recognize and reward them for their amazing talents and contributions be it in Erie, Pittsburgh, or Philadelphia.  

At the Barber National Institute, DSPs play a significant role in helping our adults reach their full potential. Through their work, the individuals live healthy, enriching lives where they can interact with others and gain a sense of independence. DSPs also offer the families a deep sense of comfort knowing that their loved ones receive personalized attention and are engaged through life skills development such as cooking and financial management as well as involvement in community events.  

Through their unwavering compassion, dedication, and commitment to providing the highest quality of care, DSPs truly embody the Barber National Institute mission of “making dreams come true for those we serve.” I would suggest that we should advocate for them all year long! 

September 9 marks the 10^th year of the Beast on the Bay. Participants will take on 10 miles of sand, water, and trails as they prove they can Beat the Beast! We’re all geared up for the big day at Waldameer at the entrance of Presque Isle.  

A one-mile adapted course is also available for those at least 12 years of age with physical and intellectual disabilities or autism.  

As we approach the 10-year anniversary, I think about what this event means to not only the Barber National Institute and those we serve, but the many participants, spectators, and volunteers.  

The Beast’s courses are known to be especially challenging, but participants know that these challenges pale in comparison to those faced by both children and adults with intellectual disabilities, autism, and behavioral health challenges. Coming together for a day of friendly competition and fun helps unite us in the goal of supporting the 6,200 individuals we serve and their families.  

I still Ryan’s first year of the Beast very well. Ryan participated on the adaptive course and if you know Ryan, you know that he is a FAST runner.  So, in a few minutes he navigated the adaptive course.  I suggested to him that he might want to try the 10-mile course the following year. He said that he’d think about it. The year quickly passed, and the second year of the Beast was here.  Two of his friends (helpers), Bryant and Craig did the Beast with him.  What did he hate?  The marsh.  He definitely was not doing that again.  Craig and Ryan did the Beast for a few years, and then Brad, Logan, and last year, Drs. Brian and Kate Stark.  When I did not have anyone to Beast with Ryan they generously offered. So, if you are at the Beast, look for Ryan and the Starks.  Ryan is the one who is always smiling and no, he does not do the marsh.  

I’d like to share with you my opening remarks to staff for the 23-24 school year: 

As we kick off our 71st school year, I can feel the enthusiasm and excitement and energy in all of you. I can imagine that our first year,1952, that same feeling was present. 

Those staff did not have the education, training, and resources that we have today. But they had your passion, your joy, and your commitment to our children and families, and we know that this passion is contagious. 

We are grateful for the positive motivation that you bring to this new school year.  You are making a profound difference in the lives of our students and families. Each and every day your work enables the ELBS to be synonymous with excellence, innovation, honor, integrity and outstanding quality and service.  Your actions inspire others to dream more, learn more, do more and become more…. you are a leader.  You are making dreams come true. 

So, smile, breathe, relax, connect with others, be ready to learn something new every day, and celebrate your successes. 

It is going to be a great 71st year! 

Maureen 

I recently heard a Back-to-School ad on the TV and immediately thought, “Can it be time for this already?” Ryan graduated many years ago, but I can still recall how I felt as July turned into August, and we began the back-to-school countdown. Ryan was always very anxious (and I was, too) so I learned over the years how I could help the both of us control our worry. Perhaps some of my ideas might help you and your child. 

• If your child is entering a new school, it is helpful to set up times prior to the start of school for your child to walk through the school building and locate his or her classroom. When Ryan was transitioning to middle school, we walked through the school and located his classroom, locker, restrooms, etc. to allay his anxiety about being in a new school. We even had an album of photos of the staff with whom he would interact. 
• Schedule an appointment with the principal – support of the administrative team is critical for a successful school year. 
• Similarly, request a team meeting prior to the start of school. I asked that all the teachers who would interact with Ryan attend as it is important that not only the classroom teacher, but the ancillary staff become acquainted with his strengths and challenges. 
• Each year I created a handout describing what teaching methods and behavioral strategies were most successful with Ryan. I made sure that the team understood the importance of setting the bar high by including a sample of his best work as well as his efforts when he lacked interest in the work he was doing. 
• Count down the days to the start of school so that your child is prepared for the transition from summer fun to school days. Bedtime and morning routines often change in the summer, so begin readjusting 2 weeks ahead of time so that your child gets used to getting up early and starting the day in a structured way. 
• Remain positive and calm about the new school year. Ryan could always sense my anxiety, which in turn made him become more anxious. 

Ryan was very fortunate to have many GREAT teachers from Mrs. C. in kindergarten through elementary, middle and high school teachers. His success can certainly be attributed to all of them! 

With an unprecedented increase in the number of children being diagnosed with autism, we find ourselves in a time when it is especially important to understand best practices for treating children with autism spectrum disorders while helping to support parents, caregivers, and teachers working with these children.

 Effective Instruction for Children with Autism was first published by the Barber National Institute in 2007 to provide strategies on how to address the unique challenges faced by children with autism, including restricted communication, trouble interacting with others, delayed cognitive development, and irregular behavior.

The field of Applied Behavior Analysis (ABA) is constantly evolving, with newer techniques and more advances in the field every day. The goal of this revised manual is to provide the most recent and valid information on effective instruction for children with autism to parents, professionals, and students to help children with autism achieve their greatest potential.

Dr. Jennifer Musolff, Behavior Analysis at the Barber National Institute, provides her expertise on step-by-step programming when implementing a curriculum to teach children with autism language and social skills.  This guide is designed to help parents and professionals meet the child at his or her current skill level and build a foundation of skills for future growth and development.

Effective Instruction for Children with Autism is available for order through this Barber National Institute webpage. It’s reassuring to know that we can face autism together – get your copy of Effective Instruction for Children with Autism today!

Sensory experiences are essential for brain development in all children. For students with autism spectrum disorder (ASD) or other sensory disorders, sensory experiences can be uncomfortable and counterproductive. Some children may be sensitive to loud noises, movement, and textures. While there are several significant benefits to sensory play for children regardless of age or developmental ability, some benefits include the enhancement of cognitive, fine, and gross motor skill development along with greater independence and sharpening of language and social skills.

For occupational therapists at the Elizabeth Lee Black School, creating a state-of-the-art sensory-based play space so that more students can learn and develop critical skills while feeling safe has been a vision. That vision is now becoming a reality.  Thanks to a grant from Erie Insurance, the Elizabeth Lee Black School will open a new sensory play space in the fall. The play space is equipped with a fitness trail along with various visual, auditory, and kinesthetic components so that learning is more enjoyable and accessible to a broader group of students we serve.

I asked the occupational therapists about their perspectives on the potential the sensory play space has for our students.  “The occupational therapy department is especially excited about the new sensory play space, and not just because we designed it! We created this space knowing the unique needs of our students as well as the desire to create outdoor sensory and play opportunities that were not previously available. We wanted our students to experience this new outdoor space using as many senses as possible, so we incorporated a bird feeder, wind chimes and spinners, bubble tubes, outdoor play kitchen and utensils, steppingstones, and many more items.”

Each classroom will also have their own raised garden bed and the ability to plant, water, and cultivate a flower, vegetable, or herb of their choosing. Our goal with this project was also ensuring accessibility so that all our students can use this space to their fullest potential. We hope that our students and staff are as excited to start interacting in this sensory space soon!

Last summer, Helen Tullio, an Erie artist with exceptional talents, donated her time to decorate the pathway for the fitness trail, which opened last summer. Helen drew the artwork for twelve activity stops along the trail, as well as a brightly colored ribbon rainbow and clouds that surround a butterfly garden enjoyed by students, adults and staff.

This week, I’m so excited to share that the Elizabeth Lee Black School will host a ribbon cutting ceremony to celebrate the milestone of completing the sensory play space. I would like to thank Brian Wilking, Senior Community Outreach Specialist at Erie Insurance, and his team for considering us for a grant as well as our occupational therapists Amanda Richardson, Amanda Schleicher, Julie Baer, Katie Dillen, and Danielle Herman.

Today we celebrate a second independence day in July. Yes, less known, but just as important! On July 26^th, 1990, President George H.W. Bush signed the historic Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against all individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the community at large. 

The ADA has helped millions of people with disabilities, their families, their friends, and society overall. We have seen many wonderful achievements since the passing of the ADA including, but not limited to: 

• Employers are required to give all qualified individuals equal opportunity in the workforce, regardless of any disability they may have. This is perhaps the greatest impact of the ADA. 

• Many physical accommodations have been implemented, such as the construction of curb cuts, ramps, automatic doors, public buses with wheelchair lifts, and countless forms of assistive technology. 
• There has been incredible growth in the overall community’s attitude and mindset regarding people with disabilities. No longer are persons with intellectual disabilities hidden away at institutions; rather, we hear more and more success stories every day about what people with disabilities are accomplishing. You will see some of those stories on our webpage, www.barberinstitute.org. 

These achievements were made possible because of the perseverance and persistence of the visionary advocates who were not satisfied with the status quo. Dr. Gertrude Barber shattered numerous “glass ceilings” in her lifetime, but July 26^th was the pinnacle of her efforts. As a member of President Kennedy’s Commission on Mental Retardation in the 60’s, she was involved in crafting initial legislation for the inclusion of persons with disabilities. She was invited to the White House by President George Bush to see this landmark legislation signed into law. She was so proud to be in attendance!  

Today we celebrate, remember, and thank those who fought for equal rights for persons with disabilities and honor them by living full lives in the community and maximizing every opportunity the ADA has made possible. The importance and need for advocacy in education, employment and community life can never be forgotten.