All About Autism

I had the opportunity to participate in the PNC Grow Up Great Advisory Board meeting last week. It is always a wealth of information, so I thought that I would share some of the key points with you. 

PNC celebrated its 19^th annual Great Month, which occurs every April.  A host of in-person and virtual activities occurred across the PNC footprint.  Some included a Donors Choose flash fund with 1.9 million in teacher requests filled, 10,000 Can Do Cans were assembled by volunteers, 218 trikes and 218 wagons were built, school supply drives were conducted across all markets, to name but a few of the programs.  

Sesame Workshop announced a multiyear focus on children’s emotional wellbeing with research-based resources and Sesame content. Their strategies support all families from celebrating joyful, everyday moments to teaching children the skills they need to understand and manage their feelings. They also are addressing how to help caring adults recognize the signs of more serious mental health challenges. 

Steve Barnett summarized a National Institute for Early Education Research (NIEER) Fall 2022 survey.  The survey asked 1,000 parents of children ages 3-5 about their children’s experiences with preschool, and childcare with results compared to pre-pandemic data. Some of the findings were: 

• Preschool enrollment has come back but not in the lower income groups (under 25,000K). 82% of families identified costs, and the absence of childcare. 
• Concern remains regarding the continued drop in parents reading to children and the potential impact on early literacy.  85% read to the child pre-pandemic and 73% in Fall of 2022.   White families dropped from 91% pre pandemic to 78% Fall 2022. Hispanic families read 77% of the time whereas in Fall 2022 53% 
• Educational level appears to impact reading as 47% with less than high school read to children vs 85% with a BA or higher read.  
• 50% of children do not play outside every day. Why? Perhaps, Dangerous neighborhoods? 
• How states set priorities for ECE can depend on the wealth of the state. 
• Equity and justice in the community: Your neighborhood should not determine your success. 

PNC voluntarism continues to grow exponentially.  Great Month 2023 saw a 95% increase in employee voluntarism compared to Great Month 2022.  The impact on employees and participating organizations is significant. 

The collegiality of the meeting always leaves me with more food for thought…… 

For this week’s blog, I have invited Cecelia Hollands, the Director of Clinical Programming for Barber Behavioral Health, to discuss the role of technology in mental health, especially as it relates to children and youth. This is an especially timely topic considering May in Mental Health Awareness Month. Although technology does present challenges, it also, under the right circumstance, has the potential to connect people.

Cecelia is a licensed professional counselor who has worked in mental health in the Erie area for ten years in various roles, including as a psychiatric rehabilitation specialist, mobile therapist, and outpatient therapist.  In addition to her work at the Barber National Institute, Cecelia also serves on the Board of the White Pine Center for Healing. 

I want to thank Cecelia for offering her perspectives and wealth of expertise on this topic.

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Several weeks ago, I presented at a mental health fair to a group of parents on the topic of the role of technology as it pertains to mental health in children and youth.  As I was preparing for the presentation, I began thinking about my own experiences parenting my two-and-a-half-year-old.  I was reminded of an incident that occurred about a month ago, when I had momentarily left my daughter in the living room so that I could retrieve something to drink for her.  As I was filling her sippy cup, I became aware that the theme song from Blippi was playing somewhere in the background.  When I returned to the living room, my daughter was relaxing comfortably on the couch, remote in hand, watching her program.  In the minute or two it had taken me to get her a drink, she had picked up the remote, turned the television on, and selected Blippi from the Netflix menu.  I was stunned!  Though I was amused more than anything else, I was also mildly concerned that, at just two-and-a-half, she had the wherewithal to use the TV independently.  In that moment, I was reminded of just how ubiquitous technology is and how my daughter will never know a time when tablets and smartphones are not part of everyday life.  Research is clear that the question is not whether technology impacts the development of children and adolescents, but how.

            The most current research suggests that children and adolescents who spend more than one hour per day on a mobile device are at increased risk for developing depression and anxiety.  According to the Pew Research Center, 95% of U.S. teens use a smartphone and 45% of those users report that they are online “almost constantly.”  In fact, a study by Common Sense Media found that the average American teenager spends an average of nine hours per day using technology; the average for eight to 12-year-olds was six hours.  Essentially, “the vast majority of American children and adolescents are spending six to nine times more time with technology than is required to begin experiencing negative mental health symptoms” (Common Sense Media).

            In addition to putting children and youth at greater risk of developing depression and anxiety, excessive technology use can also contribute to distractibility, poor emotion regulation, difficulty completing tasks, and difficulty making friends.  Technology use affects us on a neurological level as well and is associated with both transient changes in arousal and mood and long-term changes in behavior and brain function.

            It’s difficult to discuss technology use amongst children and teens without addressing the impact of social media.  Research by the Child Mind Institute supports the hypothesis that social media use can be detrimental to self-esteem.  Excess time spent on social media can lead children and youth to judge their value based on “likes” and increases the likelihood of weight dissatisfaction and self-objectification.  A 2015 poll found that the average 16 to 25-year-old woman will spend over five hours per week taking “selfies.”  Disturbingly, a 2018 poll from the American Academy of Facial Plastic and Reconstructive found that 42% of surgeons were asked by their patients to perform procedures that would improve one’s appearance in selfies.  In fact, there is now a term for children and youth who fixate on their appearance due to social media:  selfie dysmorphia (sometimes called Snapchat dysmorphia).  Fixation on one’s appearance can lead to more serious issues, such as body dysmorphic disorder, anxiety, and depression.

            Social media has also created another pathway for children and teens to bully one another.  Cyberbullying is linked to an increased risk of depression, and frequently, victims suffer in silence, so parents and caregivers may be completely unaware that it is even occurring.  Some studies have shown that the effects of bullying can be as bad as or worse than childhood abuse.  According to research by the Pew Research Center, 46% of youth report having been bullied online.  A similar poll from the Cyberbullying Research Center found that 13% of youth reported having bene perpetrators of cyberbullying.  Interestingly, “bully-victims,” or those who both are targeted and target others, are most at risk for developing depressive symptoms.

            All this is not to say that technology is without merit.  Throughout the pandemic, it was the ability to provide telehealth sessions that enabled clients to continue their mental health treatment without risk of exposure to COVID-19, not to mention the innumerable apps that have been developed to give users instant access to mindfulness exercises, meditation exercises, and psychoeducation on their diagnosis.  Social media can be used as a tool to connect to others via online support groups and for therapists to connect to each other to help clients obtain care with providers who specialize in treating certain diagnoses.  The key is for parents and caregivers to teach children and adolescents how to use technology safely and responsibly.  To establish safe guidelines for technology use:

• Don’t overreact.  Technology isn’t going anywhere, so we need to teach healthy habits early.
• Teach children about responsible online activity, especially in the areas of safety/privacy.  Make sure they know that they can speak to an adult if someone online is engaging them in scary or hurtful information.
• Use your judgment.  Establish tech-free zones and determine what counts as screen time (for example, does doing homework count?  Video chatting with a friend?)
• Protect bedtime.  Limit technology use for 30 minutes before your child or children go to sleep.
• Pay attention.  Discuss with your child what types of sites are off-limits and don’t allow them to have their phone or tablet in their room.
• Teach (and model) good online behavior.  Discuss cyberbullying, what to do if they witness cyberbullying, and over-sharing online.
• Foster real-life friendships.  Help your child develop social skills and “real-life” relationships.

For better or worse, technology is here to stay.  To protect children and youth from technology’s potential deleterious effects on their mental health, parents and caregivers must not only help children learn about safe, balanced, and healthy habits, but also to model those habits on a daily basis.

Cecelia Hollands, MA, LPC

I had the honor of speaking at the Project SEARCH graduation held on the campus of AHN St. Vincent Hospital this week. 

 Local sponsors of Project SEARCH include AHN St. Vincent Hospital, the Erie School District, the Office of Vocational Rehabilitation, and Erie County Department of Human Services, and the Barber National Institute.   

Project SEARCH began over 27 years ago at Children’s Hospital in Cincinatti. It was designed to assist students with disabilities in their final year of school in making the transition to work.  Students attend the program for a full school year at the host business (AHN St Vincent) where they become familiar with the culture of the organization, the various job opportunities available and work as as a contributing team member. Students receive hands on training through worksite rotations, supportive job coaching and individualized career exploration.  Through this training they are able to build their communication, problem solving, technology and team building skills which will assist them in securing employment upon graduation.  

Project SEARCH is definitely a win for employers as well. They can achieve a diverse and inclusive work culture where people of different backgrounds, perspectives, and ideas are given the opportunity to learn and grow within their career path.  Much has been written about the many, many benefits of employing persons with disabilities. We do know that organizations whose workforce reflects the diversity within their community are resilient, innovative and adaptable.   

It was great to have one of own preschool graduates, Averi, who also graduated from Project SEARCH.

When Dr. Barber established the Barber Center over 70 years ago, it was with the goal that all children and adults with disabilities would become active participants in their community. It was a dream at that time.  Today, Project SEARCH makes that a reality.  

This week marks National Nurses Week, and I want to highlight our exceptional nurses who provide the most skilled and compassionate care to our students. We have two wonderful nurses, Keri Moore, Kayla Litz, and Etta Loreti. I recently asked each of them about what they find most rewarding about working at the Elizabeth Lee Black School and what motivated them to enter into the nursing profession.  

Keri  

Every day is different and has its own unique set of challenges.  I enjoy watching the students grow and learn new skills throughout the year. This is my second year at ELBS! 

I would recommend anyone considering nursing try to gain some experience as an aide in a local hospital or nursing home to see if nursing is really right for them.  Nursing is a very rewarding career, but it takes a special individual to become a great nurse!  

Kayla 

My favorite part of working at ELBS is the interaction with the students. The diversity in them and getting to know each student on deeper levels to not only fulfill their needs but to also show them how important and valued they are. September marks one year working at BNI. 

It is an incredibly rewarding career if you find a location that drives you, makes you happy and allows you to find your purpose. 

Etta 

I have been a nurse for 26 years, at BNI for 8 years and ELBS for 2 years.  The kids at ELBS are fun to work with since I see the world through their eyes, and you never know what they are going to say!  The hallways are always filled with the kids’ artwork, and it is so cheerful. 

We are so grateful to our nurses for all they do to make our students as comfortable, safe, and healthy as possible! 

In celebration of Better Speech and Hearing Month, I wanted to recognize Amy Moczulski, Carly Stewart, Colleen Klenz, Stephanie Jordan, and Abigail Hagan, our school’s exceptional speech pathologists who impact our students in a positive way in and every day.  

I asked each of them about their experiences at the Elizabeth Lee Black School and what they enjoy best about their work. Undoubtedly, our incredible team of speech pathologists provide life-altering treatment for so many of our students!  

From left, Stephanie Jordan, Carly Stewart, Amy Moczulski, Colleen Klenz, and Abigail Hagan. 

Amy  

It’s hard to list only one thing I love about my job!! The most exciting part is working with such a diverse group of students with varying complex communication needs. I love that after all these years, I am still learning alongside my students every day. They push me to continually adapt and grow as a clinician to meet their communication needs to reach their fullest potential. This is my 14^th school year at ELBS! 

I would encourage anyone pursuing speech language pathology as a career path. It offers so many opportunities across so many different areas. Many people don’t realize how large the scope of practice is for speech-language pathologists. SLPs treat across the lifespan working in areas of practice including fluency, speech production, language, cognition, voice, feeding and swallowing, and so many more. Additionally, SLPs work in a multitude of settings, including schools, hospitals, NICU, private practice, skilled nursing facilities, etc. 

Colleen  

I find it most exciting that no two workdays or students are the same! Every student at ELBS is so unique – from the way they communicate to their personalities. Figuring out how best I can serve my students while promoting increased communication throughout their school day makes my job so rewarding! I have only been employed by BNI since October 2022, however, I worked as an SLP in a skilled nursing facility for 5 years prior to coming here. 

A career in speech-language pathology is so rewarding! Because our scope of practice is so broad, SLPs have the ability to work in multiple different settings (e.g., schools, hospitals, nursing homes, outpatient clinics, etc.) with individuals of all ages ranging from infants to geriatrics. Many people aren’t aware that we not only work with individuals with speech & language needs, but can also treat those with swallowing, hearing, voice, and cognitive disorders. 

Carly  

At ELBS, there is a big focus on working as a comprehensive team with other professionals to best help our students. It is so beneficial to be able to have the support of others on the team all working together to accomplish the same goals for the students. Also, I love being able to work with such a wide range of students who all have different skills and needs. There is never a boring day at ELBS! This is my 7^th school year. 

One of the major perks of becoming an SLP is that you are constantly learning and growing in this field. There are so many different settings, age groups, and areas you can work in. It is also amazing to see a student/client find their voice and to be able to know that you were a part of helping them achieve that.  

Abigail 

I enjoy providing augmentative and alternative access and methods to communication to students who are unable to communicate through verbal means. It is a constant challenge, always evolving with new technology, and very rewarding to help them communicate with others around them. I have been working here for 5 years. 

I would let them know how rewarding this career is. It is important to remember the difference we make in others’ lives, especially our students. 

Stephanie  

The most exciting part of my job is feeling like I learn something new every day from my students and the teachers, classroom staff, and therapists I work with. It is also exciting to watch my students grow and make progress. I have been here since August 2017 (currently in my 6^th school year). 

The field of speech pathology is great because it gives you so many possibilities. You can work with anyone from newborns to the geriatric population and every age in between in a variety of settings including schools, nursing homes, hospitals, and more. This is a field that never gets boring! 

Each September, the Barber National Institute offers the Beast on the Bay, which is comprised of a rigorous 10-mile course with 30 obstacles – it’s a challenge that tests even the most skilled athletes.  

While many are getting ready for the Beast, which is several months away, the Mini-Beast is in full swing this week. “What exactly is the Mini-Beast?,” you may ask. It’s an opportunity for Elizabeth Lee Black School students to hop, jump, skip, toss, and push their way through unique and fun obstacles at their own pace.

After all, everyone deserves the opportunity to Beat the Beast! 

The Mini-Beast contains a variety of activities that are accessible to a diverse array of activities and provides a high level of engagement to each of our students. Brent Manti, our school’s physical education teacher, is very instrumental in creating a physical education program that is inclusive and supports each student in his or her development.  

Thanks to the Emergency for Non-Publics Schools (EANS) Grant, the Elizabeth Lee Black School was able to obtain Lü Interactive Playground, which transforms traditional school environments into immersive and interactive spaces using a wide range of applications in combination with world-class audiovisual equipment. The Lü Interactive Playground will certainly provide an added level of engagement during this year’s Mini-Beast! You can learn more about the Lü Interactive Playground by visiting https://lu-play.com.  

The Mini-Beast is in full swing this week, which is preparing us for the Beast in September. Learn more about the 10^th annual Barber Beast on the Bay taking place on September 9 by visiting the office website, www.barberbeast.org.  

As you may have seen and heard in the news recently, the 2023 Jay and Mona Kang Art Show, which was to take place both in-person and online, is being offered exclusively through our virtual platform located at https://2023.barberartshow.org.  

You may ask, “Why was this change made?” Last week, the Barber National Institute was faced with a credible threat from a member of the community. For the safety and security of our employees, children, adults and families we serve along with a wide range of stakeholders from the community, we chose to offer the experience online.  

While it may be disappointing to not be able to see so much beautiful artwork in person, we are committed to keeping everyone as safe as possible. We are working with local agencies to ensure that the highest levels of security are followed.  

The Art Show continues to be a great way to support the work of local artists, and it also serves to support the mission of the Barber National Institute. Our patrons are supporting the show as well as our mission to provide the highest quality of services to children and adults with disabilities. We are hopeful that next year’s event will have an in-person component.  

You still have time to browse this year’s online gallery. Don’t delay or your favorite piece of art may be sold! 

The annual Art Show has been a Barber National Institute tradition since 2006. Initially, we wanted to have an event that would celebrate “April is Autism month”. As we discussed ideas, we felt that it was important to recognize both children and adults with autism and other disabilities as well professional and amateur artists who support people with disabilities. And so began the first Art Show.

We were assisted by the Erie Art Museum who loaned us their panels for the exhibit. There was an overwhelming response the first year. People wanted to participate, and the public responded with their interest in attending the show.

The show grew over the years until 2019 when we were forced by the pandemic to move to a virtual platform.  Yet the show continued to grow as persons across the country could participate since it was virtual.

This year, we have nearly 300 paintings, photography, and scriptures from youth, adult, adult amateur and adult professional artists.

The in-person galleries will be available for viewing at the main campus of the Barber National Institute from April 15-April 17, 2023. This will be the first in-person art show since the start of the COVID-19 pandemic.

Online galleries will also be available from April 14-April 27, 2023 for those who want to conveniently browse a wide range of artwork from anywhere.

The Jay & Mona Kang Art Show is one of the region’s largest and most diverse art exhibits, featuring creative works of youth and adult artists across a variety of media.

For more information, please visit http://www.barberinstitute.org/events/art-show.

The Art Show is a great way to support the work of local artists, and it also serves to support the mission of the Barber National Institute. Our patrons are supporting the show as well as our mission to provide the highest quality of services to children and adults with disabilities.

Don’t delay or your favorite piece of art may be sold.

As we begin the Autism Acceptance month of April, I thought that I would review some of the basic facts about Autism. 

•  Autism is a neurological disorder that impacts social skills, communication skills and may result in repetitive behaviors and restricted interests.  
• In 2023, the CDC reported that approximately 1 in 36 children in the U.S. is diagnosed with autism spectrum disorder (ASD), according to 2020 data. 
• Boys are four times more likely to be diagnosed with autism than girls. 
• Most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2. 

• It is a spectrum disorder.  31% of children with ASD have an intellectual disability (intelligence quotient [IQ] <70), 25% are in the borderline range (IQ 71–85), and 44% have IQ scores in the average to above average range (i.e., IQ >85). 
• Autism affects all ethnic and socioeconomic groups. 
• Early intervention/Education affords the best opportunity to support healthy development and deliver benefits across the lifespan. 
• There is no medical detection for autism. 
• There is no one cause for autism, but it is believed to be a genetic disorder with many genes involved. 

As I looked back on the Autism month blogs that I have written these past 10 years, I am struck by the fact that the incidence of Autism has increased so dramatically.  I would guess that is in part due to the exponential increase in awareness among parents, physicians, educators and the general public.   No longer, I hope, is there a stigma attached to having a child with a disability.  If 1:44 children have autism, then many if not most people would know a child or adult with Autism.  

So, in 2023, what should our focus be moving forward?  I believe it should be on supporting, including and engaging adults with Autism in all aspects of our lives.  For children with Autism, Early intervention and educational programs are provided from infancy to 18 or 21 years of age.  But the mandate for services ends.  There are programs for adults, but the availability can be based on where you live.  And, of course, as it is a spectrum disorder, some adults are pursuing higher education while others may be looking for vocational training, day programs, supported employment.  

We, as individuals, and as a society need to continue to explore how adults with Autism can find meaningful engagement.  What works for one person may not work for another. 

On a personal note…. My son, Ryan, would tell you that he has 3 jobs. He is employed at Bello’s grocery store and does maintenance work.  His 2 other jobs are “helping the kids at the Barber Center by cleaning their classrooms and reading to the kids every Tuesday.”  He is very proud of his work, which offers him dignity, confidence, and drive.  Vacation is not a word in his vocabulary. He plans to continue working forever as he does not want to ever retire.  Then, when he is 90, he will go to heaven and do the same work there. Of course, we will be going together…. 

Due to the important announcement from the Centers for Disease Control and Prevention last week regarding an increase in autism spectrum disorder (ASD) rates, I posted a blog on Friday, March 24.

In case you missed it, please visit my blog post on Rising Autism Rates: Factors Impacting Diagnosis, Treatment, and Intervention.

What are your thoughts on the factors leading to increased diagnosis in the U.S.? Undoubtedly, this will be a discussion point for years to come as children with ASD move into adulthood and require continuation of care.