All About Autism

The Centers for Disease Control and Prevention (CDC) released 2 reports yesterday looking at the rate of children diagnosed with ASD. These findings are based on surveillance data from 11 communities that participate in the CDC’s Autism and Developmental Disabilities Monitoring Network. The data are not nationally representative and vary widely by location – from a prevalence of 1 in 22 children in California to about half as many in Maryland. The CDC says more research is needed to understand this variation.

In 2020, about 1 in 36 children had been diagnosed with autism by age 8, according to the CDC – about 2.8%. That’s up from a prevalence of 1 in 44 children in 2018 and 1 in 150 children in 2000.

Some important findings:

For the first time, diagnosis was more common among Asian, Black and Hispanic children than it was among Caucasian children. The CDC researchers note that this shift “may reflect improved screening, awareness, and access to services among historically underserved groups.” In fact, between 2018 and 2020, autism prevalence rose more than twice as fast among Asian, Black and Hispanic children than it did among Caucasian children.

Still, some trends have stayed consistent.

Autism prevalence is significantly higher among boys than girls – in 2020, there was about a four-fold difference. But it was the first year that more than 1% of 8-year-old girls had been diagnosed with autism.

In recent years, good progress had been made in early detection of autism – an earlier CDC report found that children born in 2014 were 50% more likely to receive an autism diagnosis or special education by age 4 than those born in 2010.

I was very interested to read what if any impact did COVID have on diagnosis. CDC found that there were “sustained lower levels” of evaluations and identification of autism across most of the surveillance network.

In first six months of the pandemic, there were 217 fewer evaluations for every 1,000 children at age 4 than there were four years earlier. There were also nearly three fewer identifications for every 10,000 children, according to the CDC report.

Since we know the impact of Early Intervention, my concern would be that many children did not receive evaluations, did not get a diagnosis and so were unable to start services until a later age…which could have long term impact.

Looking back to 1995 when Ryan was diagnosed by my brother, Dr. Joe Barber, an Erie pediatrician and child neurologist, we have come so far.  My question always is where will we go from here?????

Many if not most people are familiar with Down syndrome. However, for those who are not, a few facts: 

World Down Syndrome Day (WDSD) is celebrated annually on March 21 to bring global awareness about Down syndrome, a condition in which a child is born with an extra 21st chromosome. 

The 21st day of March, which has been observed by the UN since 2012, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. The medical term for having an extra copy of a chromosome is “trisomy” so Down syndrome is also known as Trisomy 21. 

Each year, 1 in 700 babies are born with Down syndrome in the U.S., which is about 6,000 babies annually.  

The theme for World Down Syndrome Day 2023 is “With Us Not For Us.” The Down syndrome international network (DSi) seeks to establish a human rights-based approach to disability. They are campaigning for the right to legal capacity, supported decision-making and easy-to-understand communication. 

We celebrate World Down Syndrome Day at the Elizabeth Lee Black School with the ROCK THE SOCKS DAY, as the karyotype for Down syndrome looks like mismatched socks. So, when you are walking through our halls and you see our staff and students with mismatched socks, you will know that we are celebrating a very special day.  

With Saint Patrick’s Day quickly approaching, I wanted to focus on the legacy of the shamrock. More specifically, I wanted to share some history about the Barber National Institute shamrock. 

We all know that the shamrock is the familiar emblem of Irish culture. Often, I have been asked, “Do you have a shamrock for your emblem because the Barber Family is Irish?” While we do come from an Irish heritage, the shamrock truly has a meaning that extends beyond just our lineage.  

I recall sitting with Dr. Barber as she explained her concept of the shamrock to artist Frank Fecko. Each of the three leaves has significance: faith, hope, and love.  

Through faith, hope, and love, we can reimagine the opportunities available to people with disabilities and their families. We can build bridges and break down barriers. We can help create a brighter future for those who want to be seen, heard, and respected for their valuable contributions.  

Dr. Barber’s dream for better lives for children and adults with disabilities could have remained a dream, but in fact became a reality because of the continued support of our staff, the Erie Community, and an ever-expanding group of stakeholders. This is where the shamrock’s stem comes in. It represents our community of supporters, our children and adults, families, staff, and friends. Frank used Dr. Barber’s guidance to design our shamrock, an emblem we have used every day since! 

Today, the shamrock endures as our promise to future generations that the Barber National Institute will continue our commitment to serving children and adults with disabilities and their families. It’s comforting to think that we will continue to see this “lucky” green symbol for decades to come! 

Early literacy: is it ever too early to start? 

My response would be a definite “No.” A baby’s brain begins forming connections very quickly after birth, and these are the connections that will build the foundation for life-long learning. It’s estimated that around 90 percent of a children’s brain development occurs by the age of 5, which makes learning experiences so critical early in life.  

I remember reading to Ryan as an infant.   One of my favorites was “How much do I love you.”  Reading was an activity we did every night.  By the time he was a toddler, he was pointing at the figures on the page and helping me turn the pages.  Why read stories to your child?  When you read to your child, they are hearing new words beyond those they hear at home as the family goes about its daily business of getting ready for school, eating, bedtime, and shopping. Through reading, children hear more complex and sophisticated language, which becomes the building blocks of their literacy and language development. 

 There is some interesting but rather startling data as to the amount of reading parents did pre pandemic and during the pandemic. There was a dramatic decline in the amount of reading done during the pandemic in the homes of families struggling with poverty. Children did not attend school, parents lost jobs, how would parents find the time to read?  So, children, especially the early learners, returned to school and are now struggling to meet the reading benchmarks.   Research indicates that struggling readers in first grade are 88% more likely to be struggling readers in 4^th grade.  That is why there is so much attention on 3rd grade reading scores because if our children are not on track by the end of third grade their chances for success decrease substantially.  

So, if you are a mom or dad, grandma or grandpa, pull out your books and start reading… I am. 

For this week’s blog, I have invited Cecelia Hollands, the Director of Clinical Programming for Barber Behavioral Health, to discuss the teen mental health crisis and what services the Barber National Institute can provide in helping address mental health needs of teens and their families.

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, which I am certain will help teens and their families locate accessible and effective mental health services.

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In her most recent blog post from February 23rd, 2023, Dr. Maureen Barber-Carey wrote about a recent report released by the Centers for Disease Control (CDC) pertaining to teen mental health; Sadly, the statistics are both shocking and sobering.  As the Director of Clinical Programming for the behavioral health programs at the Barber National Institute, I am all too aware of the barriers facing adolescents in today’s world, especially if one considers the complicating factors of being an adolescent girl or identifying as LGBQ+.

While it should be noted that the data shows that all teens’ mental health has declined within the last decade, certain subsets of youth have far different experiences than some of their peers.  The CDC report, which looked at the ten-year period between 2011-2021, found that the number of teen girls who feel persistently sad and/or hopeless has grown by a staggering 60% since 2011.  Nearly 25% had made a suicide plan.  Additionally, almost 25% of female students experienced sexual violence within the past year and 14% reported having been physically forced to have sex.  Teens who identify as part of the LGBQ+ population are more vulnerable to all forms of violence than their peers.  According to the report, nearly 70% of LGBQ+ students had experienced persistent feelings of sadness or hopelessness during the past year, and almost 25% had attempted suicide.  

It should be no surprise that exposure to violence and/or the experience of sexual trauma is deeply intertwined with teen mental health and substance abuse.  It follows that nearly 30% of female students reported having used alcohol within the past 30 days.  Furthermore, students who identify as LGBQ+ were more likely than their peers to engage in use or misuse of all substances, including illicit drugs, alcohol, marijuana, and vapes.

There are numerous factors which have contributed to the state of teen mental health as it stands today (more than I can get into here), however, these factors are deserving of attention, reflection, and examination, which is why I would recommend reviewing the full CDC report.  Of equal importance is to examine what type of preventative measures can be taken, and what services exist to treat teens who are experiencing a mental health crisis.  At the Barber National Institute, we offer an array of services targeted for children and teens who are experiencing a mental health concern.  Our clinicians all receive annual training in suicide prevention and working with the LGBQ+ population and take a trauma-informed approach to caring for their clients.

Housed within our Intensive Behavioral Health Service (IBHS) line, we have master’s level mobile therapists (MTs) who can meet with their clients in a variety of settings, including the home, school, and community.  Our MTs all receive training and certification in Trauma-Focused Cognitive Behavioral Therapy (TF-CBT).  An MT will work with you and your teen to identify mutually agreed upon treatment goals.  While much of their work will be working one on one with your teen, the MT will also work closely with the parent or caregiver throughout treatment so that parents are aware of how to best support their teen outside of the context of therapy.  

Slightly more intensive than mobile therapy in terms of the frequency of services and the types of services offered is our Family-Based Mental Health (FBMH) program.  This program is designed to treat the behavioral health needs of children and teens whose mental health is severe to the degree that they are at risk of some type of out of home placement (such as foster care, inpatient psychiatric care, or long-term residential treatment).  All our FBMH therapists receive monthly training in Eco-Systemic Family Therapy through the Western Psychiatric Institute and Clinic.  FBMH therapists work in a team of two and handle the therapy needs, case management needs, and crisis needs of the client and his/her/their family within the home, school, and community settings.  While your teen might be the “identified patient,” practically speaking, FBMH therapists work with the entire family system to assist with stabilization, establishing appropriate roles and rules within the home, and helping parents/caregivers best support the needs of their child or children.

Last, our Acute Partial Program is a short-term, 15-day program that is meant to provide immediate stabilization for children and teens whose behavioral health needs are causing severe disruption to their everyday functioning.  Programming is offered Monday-Friday (roughly equivalent to school hours) and encompasses psychiatric care, group therapy, individual therapy, and family therapy.  While in the acute program, clients participate in intensive group therapy and receive regular individual therapy so that they can learn tools to provide a healthy, safe means of coping with their particular challenges.  Additionally, clients and their families have an opportunity to meet with our psychiatrist several times within a treatment stay to explore whether medications might be appropriate.  

For more information on these programs, you can visit our website at barberinstitute.org or contact me at Ceceliahollands@barberni.org

Cecelia Hollands, MA, LPC

In my last two blogs, I discussed some of the latest research in ASD. Today, I am following up with a look at the mental health challenges during the teenage years. These years can be challenging for anyone, but recent data released by the Centers for Disease Control and Prevention shed light on a troubling trend that is impacting teen girls especially hard.  

Research has shown that teen girls faired significantly worse than their male counterparts when it comes to mental health challenges, thoughts of suicide, exposure to violence, and persistent sadness and hopelessness.  

The Youth Risk Behavior Survey (YRBS) Data Summery & Trends Report, a publication of the CDC’s Division of Adolescent and School Health (DASH), highlights data collected among a nationally representative sample of U.S. high school students. The survey considers several issues facing teens: sexual behavior, experience with violence, substance abuse, and mental health and suicidality.  

According the YRBS Data Summary & Trends Report: 2011-2021, 42% of high school students felt so sad or hopeless that they stopped doing usual activities. However, 57% of female respondents were impacted by persistent feelings of sadness as compared to 29% of male respondents.   

Access the full YRBS Data Summary & Trends Report: 2011-2021.  

What is the root cause of this startling trend of increased persistent sadness at a much higher rate among females? There are several factors, including increased isolation brought on by the COVID-19 pandemic, bullying in schools, influences of social media and 24/7 news outlets, stress combined with a lack of coping strategies, and untreated mental health conditions such as anxiety and depression, that are helping fuel this national issue.  So, the question is, what are we as educators and providers going to do to support high school students???? Your thoughts? 

Ryan and I have been looking forward to Random Act of Kindness Day on February 23. Each year we discuss how we shall celebrate.  Often, we decide that for the entire week, we will practice random acts of kindness and discuss them at the dinner table. Some of his thoughts for this week include: 

• Fold my clothes
• Put clothes in the laundry bin instead of leaving them on the floor 
• Read to Happy Hearts children on Tuesday
• Clean the children’s classrooms, locker rooms, gym, and cafeteria 
• Hold open the door for others 
• Say something kind to everyone I see 
• Focus on work when I’m at work 
• Be calm 

As I thought about the topic of kindness, I began to consider how kindness is taught. The rampant problem of bullying in schools underlies a deeper issue – are we teaching our children to be kind?  I saw with horror the pictures of the young girl who was attacked in school and then committed suicide.  How can that possibly happen? 

It is never too early for children to hear from their parents that kindness and caring for others must be a top priority. I think that Ryan and I were talking about this when he was three years old.   Learning to be caring is like learning anything else.  It takes practice. Lots of it.  This begins with us, the parents, as we are our child’s first teachers.  We do play an important role as mentor and role model. We may not be aware, but our child is observing us and seeing how we handle everyday situations.  The way we respond is, no doubt, the way that he/she will respond. 

Ryan and I often talk about the news, the war in Ukraine, the struggles of homeless people, what it means to have a job or to lose one’s job.  We talk about how we can help others whether they are in Erie or across the world.  I often say to him, “We have so much that it is our responsibility to help others.” 

I like to think that this week is a great reminder to all of us to be kinder to the people and the world around us.  Our world can certainly use an extra dose of kindness.  

Last week, I discussed the fact that Autism rates have tripled. It is not clear whether this is due to better detection and reporting or an increase in the number of Autism cases. 

There is no known single cause of autism spectrum disorder (ASD), but it is generally accepted that it is caused by abnormalities in the brain structure or function. Brain scans show differences in the shape and structure of the brain in children with ASD compared to neurotypical children. 

We do know that genetic factors may be the most significant cause for ASD.  Much of the risk of developing ASD, around 83% according to one analysis, comes from inherited genetic factors.  A child can inherit risk factors from one parent or both.  Early studies of twins had estimated heritability to be over 90% meaning that genetics explains over 90% of whether a child will develop ASD.  Researchers estimate that 2,000 to 3,000 genes contribute to ASD.  

Much has also been written about environmental factors or influences. These influences appear to increase the risk that a child will develop ASD. However, it is important to keep in mind that increased risk is not the same as cause.  

Other factors may include: 

• A child’s sex. Boys are about four times more likely to develop ASD than girls are. 
• Their disorders. Children with medical conditions such as fragile X, tuberous sclerosis, Rett syndrome have a higher-than-normal risk pf ASD or autism like symptoms.  
• Extremely preterm babies. Babies born 26 weeks before gestation may have a greater risk of ASD.  
• Parent ages. There may be a connection between children born to older parents, but more research is necessary to establish this link. 

One of the greatest controversies in ASD centers on whether a link exists between the disorder and childhood vaccines. NO reliable study has shown such a link. The original study that began this debate was retraced due to poor design and questionable research practices. 

I hope that my brief review has helped you better understand the causes and risk factors of ASD. 

Over the last 2 weeks, I discussed some of the key research for 2022.   However, there was an additional study recently published in the Journal of Pediatrics that I wanted to bring to your attention.  A team from Rutgers University looked at the trends in the identification of children who have been identified as having Autism Spectrum Disorder (ASD) by the age of 8.  There are 17 Center for Disease Control and Prevention (CDC) sites across the U.S. which estimate the rates of ASD based on the combination of medical diagnoses and records from schools and health care providers. New York and New Jersey saw, between the years of 2000 and 2016, a tripling of Autism rates. 

Nationally, the CDC in 2021 reported that the rise in ASD rates has been similar to New York and New Jersey.  One in 54 children have been diagnosed with ASD by the age of 8 in 2016 compared to 1:150 in 2000.  Why is that?   

I believe that there is a much greater understanding and awareness of ASD. I remember when Ryan was a young child, probably around the year 2000, and a staff at Wegmans asked me about him.  I explained that he had Autism and the person thought that I said that he was “artistic.”  I don’t think that would happen today.  

The Rutgers study did find that there was a sharp increase in the number of 8-year-olds diagnosed with ASD who did not have intellectual disabilities. There was a fivefold increase from 2000 to 2016 compared to a twofold increase.  I believe that in 2000, children with Intellectual Disabilities (ID) were the ones initially seen as having a challenge and the population of children without ID were overlooked.

Today, I believe that physicians have gotten much better in identifying the children with ASD without ID.  Next week, I will talk about what is and what is not a risk factor for ASD, including vaccines, genetics, and viral infections. 

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.