All About Autism

May is Children’s mental health month, a time to shine a light on mental health and mental illness, as well as treatments and services that are available in your community.

At the Barber National Institute, I consider one of our greatest mental health resources the children’s partial hospitalization program. Back in 1998, we realized that a number of our children had both intellectual disabilities as well as mental health disorders. We determined a program was needed that could help to reduce challenging behaviors through a combination of behavioral treatment, pharmalogical management, and changes in environmental structure.

We planned to provide functionally-based intensive intervention in the areas of communication, self-help, and social and emotional skills, thereby facilitating age-appropriate interactions. We would also provide parents with information in training in the effective methodologies to minimize the impact of the disorder on the family. We applied and secured our initial license to offer a children’s acute partial hospitalization program, becoming one of the first school-based partial programs in Pennsylvania.

Our current program serves students who are enrolled in our approved private school. Following referral and acceptance into the program, a psychiatrist observes the student and consults with staff on a weekly basis. A clinical psychologist and mental health specialists are also part of the classroom team. Every 15 days, the psychiatrist and team members meet with families to update them on the student’s progress as well as to discuss any concerns in the home. When the student has met the treatment goals, a discharge plan is developed with the family to assure the continuity of supports, both in the school and at home.

This program has made an invaluable difference for both our children and our families. In most cases, in-patient treatment is avoided and the children are able to remain at home with their families. Although our numbers are small (only 20 children are served at any given time through MH Partial) the intensity of the services yields very positive results. We plan to continue this component of our approved private school program as long as the need exists.

As you continue through the month of May, know that there are resources available to you or a loved one, both in your community and online. Below, I’ve shared some great tools from the National Council of Behavioral Health. Please share other great resources you may have below!

http://www.thenationalcouncil.org/mental-health-month/

In Erie, May is usually when we start to believe spring is really here. After the last few weeks of temperatures in the 30s every morning, I can’t wait! As we were having dinner last night, I commented to Ryan that “FINALLY, we’re beginning to see buds of future leaves on the trees in our backyard!”

Spring is much more than warmer temperatures and blooming flowers. I think we all find ourselves reflecting on the idea of “new beginnings” this time of year. There is something about looking outside and seeing new life that makes each of us want to reorganize, recommit, and refocus on growth.

As I take the month of May to reflect on areas in my life I want devote focus and energy to, I can’t help but think of Maria Shriver’s recent blog, “The Power of Internal Strength.” In it, she shares her powerful message that right now her focus in life is to “build herself up from the inside out.”

My challenge to you this month is to join me as I focus on my internal strength, not just in my body, but in my mind and in my spirit as well. As Maria says, “If you are strong on the inside, you can be a better person, a better parent, a better professional. You can give back because you have given to you, and now you can start from a place of strength.”

Scientists and researchers are constantly uncovering more information related to autism, offering insights into the origins, possible causes and even at times potential cures. I come across dozens of articles on a weekly basis, some of which seem more important than others. I thought I would share on a monthly basis stories that caught my eye.

~ Maureen

Recognizing Anxiety in Children and Teens with Autism

Research has long shown that people with autism have high rates of anxiety disorders. Research also suggests that anxiety tends to have different causes and symptoms in those affected by autism than it does in the general population. For these reasons, the Autism Speaks ATN prioritized the development of the diagnostic and treatment guidelines that became part of a special ATN/AIR-P supplement to the February issue of Pediatrics.

Read the full article here.

https://www.autismspeaks.org/blog/2016/04/26/your-atnwork-recognizing-anxiety-children-and-teens-autism

Brain Scans Could Diagnose Autism Sooner

                A study has found that brain scans may soon be able to assist in earlier diagnosis of autism in boys.  Researchers have been able to identify signs of autism in the images – which can be used to diagnose the disorder and measure its progression. They found boys with autism have changes in the part of their brain that controls social perception – that is, being able to understand a person’s facial expression and tone of voice. In future, the scans could diagnose children at an earlier age, providing treatment when it is most effective.

Read the full article here.

http://researchautism.net/news/article/10489/

Autism Costs More than Double with Age

State spending on adults with autism is dramatically higher than for children, according to a new analysis that may offer hints of what’s to come as more people on the spectrum grow up. In a study looking at per-person spending on autism services in California, researchers found that the state is shelling out roughly $26,500 on average for each adult annually. By comparison, costs for those under age 18 are averaging about $10,500.

Read the full article here.

https://www.disabilityscoop.com/2016/04/19/study-autism-costs-double-age/22200/

Prevalence of Autism Spectrum Disorder Unchanged in New CDC Report

A new CDC report finds the prevalence of autism spectrum disorder largely unchanged from two years ago, at one in 68 children. Rates have been rising since the 1960s, but researchers do not know how much of this rise is due to more children being diagnosed with ASD or if actual cases are increasing, or a combination of both. The CDC’s first prevalence report, which was released in 2007 and was based on 2000 and 2002 data, found that one in 150 children had ASD.

https://www.sciencedaily.com/releases/2016/03/160331154247.htm

Tune in next month for an update on autism research!

Dr. Gaston has been visiting the Barber National Institute for over 3 years. He consults with various classrooms to assist in problem-solving adaptation issues. Sounds great, but what does that mean? Dr. Gaston works with each of our students with physical challenges to help them be as independent and mobile as possible. He does this in a variety of ways. For example, Dr. Gaston may position students in chairs to maintain posture or add a wedge beneath a student’s arm or head to improve eye-hand coordination, just to name a few of his many techniques. These adaptations may seem small, but they enable the student to complete worksheets, use the iPad, work on puzzles, etc.

What’s fun about his visit is that he stops by to introduce us to his new products. He is more than willing to allow us to try out his new items, and he gives us samples of any product we request. Additionally, Dr. Gaston will consult with teachers and therapists on how a piece of equipment that has already been integrated into a classroom is developing and if we need to consider a next step.

Learn more about Grip Solutions at his website here.

Products from Grip Solutions

I was thrilled when Senator Bob Casey agreed to be a guest blogger for Autism Awareness month during his recent visit to Erie and the Barber National Institute. His tireless efforts in the Capitol have made such a wonderful impact. I’m honored to share his words with you today. 

~ Maureen

Eight years ago, a group of parents came to Congress, asking for help with a pressing issue- adequately saving for their children’s future.  Among these parents was a gentleman named Steve Beck, who knew firsthand the challenges many families face when a loved one has a disability.  Faced with a lifetime of extraordinary expenses, parents are told not to save or put assets in their child’s name. Thanks to Steve and other countless parents, we were able to change this dynamic with the passage of the ABLE Act.

Senator Casey

This law will impact many individuals. One person is a woman named Sara Wolff. Sara is from my home county of Lackawanna County. She is someone who has a disability but is very able. She is a law clerk, a well-known speaker and a dynamic person who is an inspiration to many, including me. And in this month, when we celebrate Autism Awareness Month, I want to commend the dedication and commitment of people who are, to borrow a phrase from the Bible, like ‘laborers in the vineyard’ fighting battles on behalf of those who have disabilities.

Throughout my time in public office I have worked to improve and expand opportunities for people with disabilities, and to support those with disabilities such as Autism throughout their lives.  In caring for and supporting people with disabilities we must ensure they have access to support services and a health care workforce that allows them to achieve everything they wish to and can achieve.

Thanks to the continued hard work of disability advocates and families, we are seeing widespread adoption of state implementing legislation—the vast majority of states have enacted laws to pave the way for the opening of ABLE accounts. I’m especially pleased that the Pennsylvania General Assembly passed and the Governor recently signed implementing legislation so that families across the Commonwealth can soon begin to open ABLE accounts. Shortly before the ABLE Act was passed by Congress in 2014 Steve Beck passed away suddenly and unexpectedly. The progress of the ABLE Act in so many states is a testament to his vision and tireless advocacy.

The ABLE Act is grounded in a simple but vitally important belief—that people with disabilities have a lot of ability. That they can not only contribute substantially to our quality of life and the success of our nation, but if we give them some tools, they can lead as full a life as possible. That’s the belief that has guided us in this effort.

Autism Awareness Month stresses the need to recognize, understand, and study autism. We need to continue our research efforts to understand the causes of autism and look at ways to help individuals reach their full potential. I look forward to joining you in those battles along the way.

April is Autism Awareness Month, and it always has a special importance to me because of my brother, Jason. I think a lot of people see the blue for Autism Awareness Day and think it’s great, but they don’t realize so much more goes into Autism and Autism Awareness than that. If you’ve grown up in North East or you’ve known me for a while, you probably know or have heard about my other two brothers, David and Josh, but most people don’t know Jason. Let me tell you a little about him and what growing up with and loving someone with autism has been like.
Like me, Jason is 24, soon to be 25. Like me, Jason loves goofing around, food, pretty girls, and sleeping in on Sundays. But Jason is a lot like a time capsule from our childhood, as many of the things he likes even today are the things that we did and watched before I ever started kindergarten. He loves Sesame Street and when they sing the alphabet. He gets upset when the crows make fun of Dumbo in the Disney movie. He watches Christmas movies in June and falls asleep every night with a Thomas the Tank Engine comforter. Jason is also non-verbal.

I love the promotion of autism and letting everyone know of the triumphs those with autism achieve every day. But I also think a lot of people don’t know about the behind the scenes. Every person with autism is different, and I can only speak to my experiences, but for me autism is a lot like life in that there are many ups and downs.

Brandon and Jason, 2016

For me, autism is growing up trying to understand stims, obsessions and tantrums. Autism is going to school and sharing classes with one triplet brother while the other brother goes to the special ed classes at a completely different school. Autism is going to elementary school, and, when your school adds special education, seeing your brother across the lunchroom with his special education class and hearing the other kids in your class make fun of them. Autism is sometimes only having one parent at your sporting event because the other one had to be with your brother. Autism is your parents trying to balance between making sure the needs of their son with autism are being met with giving attention and love to their other three sons. Autism is being a teenager and watching helplessly as your brother gets angry and attacks your mother. Autism is being 17 and having to deal with the reality that your brother is going to a group home on weekdays so that he can receive even more care. Autism is taking the picture I’ve attached with this text twenty times because he thought it was funny to keep reaching out to steal the phone. Autism is being scared because you know one day you’re going to move away and you don’t know if your brother will ever think about you or miss you because he can’t talk about it.

For all those things, autism is also having a brother be by your side no matter what. Autism for Jason is not having to worry or get upset over girls or jobs or money, but instead because mom said no to a fourth piece of pizza. Autism is showing affection and getting hugs consistently. Autism is finding out what makes your brother laugh and then always being able to go to them when your brother is having a problem. Autism is your brother asking for you to tuck him in to his Thomas the Tank Engine comforter at night, which you love because it gives you a chance to spend quality time with him and let him know you love him. Autism is seeing the innocence of someone who loves purely and is not hardened by a rough world. Autism is someone finding pleasure in some of the most simple things in life like paper, bubbles, and clothes hangers. Autism is someone living life the way they want to unapologetically. Autism is forming the bond of brotherhood that can never be broken.

In living with Jason for almost 25 years, I know him pretty well. I know the experiences we’ve had together, good and bad. I know what he likes and what he doesn’t. But I know two things the most out of everything — one, that I am blessed to have my brother in my life, and two, that although his life is not considered “normal” or “typical,” my brother is happy. My brother cannot be judged highly on his academic prowess or his job or his status or how much money he has, but my brother absolutely has happiness in his life. Isn’t that what we’re all searching for? My brother is happy in his world, and rather than judge it or wish that it were different, I do my best to be part of that world and do what I can to contribute to it.

Established in 1971, The Week of the Young Child™ (WOYC) is an annual celebration sponsored by the National Association for the Education of Young Children
, created to focus public attention on the needs of young children and their families and to recognize the early childhood programs and services that meet those needs.

For every dollar spent on high-quality early education, society gains as much as $16 in long-term savings. Research has proven that children who participate in high quality preschool programs are far more likely to experience greater educational achievements, strive toward higher vocational aspirations and contribute to society in adulthood. The WOYC is a time to plan how we—as citizens of a community, of a state, and of a nation—will better meet the needs of all young children and their families.

At the Barber National Institute, we have long been invested in early childhood education. In fact, we first began our preschool programs for children with special needs in 1952.

What do we have available in 2016?

Our Pre-K Counts program is part of a statewide initiative to provide a high-quality preschool experience free of charge for children of qualifying families. Pre-K Counts is designed to assist children who may be considered “at risk” because of the family economic, language, cultural or other circumstances which may prevent the child from developing the skills necessary to enter kindergarten ready to learn.

Happy Hearts Early Childhood Program, a fully inclusive preschool, provides a state-of-the-art educational experience where all preschool children have the opportunity to learn and grow. We began this program in the early 1980s, to allow neighborhood children and children of our staff to attend preschool. Today, we serve typical children as well as children with hearing impairments and identified developmental delays. Happy Hearts is a four-out-of-four Keystone Stars Certified program and aligns with a progressive, innovative curriculum that encourages the development of creativity, self-direction, positive peer interactions and communication. Our history of providing individualized education allows us to guide each child toward his or her potential.

We also offer a specialized preschool program serving preschool-age children who require a more structured classroom environment and a higher staff to student ratio.

Our involvement with young children doesn’t end there. By partnering with organizations such as PNC Bank’s Grow Up Great program, together we help to promote and encourage all children to reach their fullest potential, while sharing the resources to help make it possible.

Our WYOC includes several fun activities, including a parade, a fair, a movie day, and even a dance – with Disney princesses!

Do you volunteer?

As we begin National Volunteer Week, I thought back to my “early days” of volunteering. In the Barber family, 13 was the magic age to begin volunteering. A girl had two options: be a candy striper at St. Vincents or volunteer at the Barber Center. It’s probably no surprise that I chose the Barber Center! In those days, I was the “extra-extra helper” who did whatever the teacher and aide needed at the moment. Over the years, as I gained more experience with volunteering, I was given more responsibility. Back then, the Barber Center was located at the former TB hospital at 136 East Avenue. It consisted of 4 classrooms on the first floor; the second floor was for adults; the basement doubled as a cafeteria and our PT area. I worked with pre-school children who were hearing impaired as well as children with intellectual disabilities and physical challenges. Classroom size was so much larger than today – I remember there being 18-20 children in each class! Certainly, they needed as many hands as they could get!

A group of BNI’s first volunteers

In many ways, I truly believe that these early volunteer experiences shaped me into the person I am today – much like I feel that Ryan’s volunteer experience at Bello’s has influenced him. It was because of my volunteer work at BNI that I chose to study special education after college. (Of course, my Aunt Gertrude Barber was a strong influence as well!) Whether or not you are lucky enough to volunteer in your future career, volunteering is a great way to gain exposure to a variety of industries, meet potentially influential people, build relationships, and begin to establish a network of professional contacts.

But the benefits of volunteering don’t end there. Volunteering:

• Gives you a sense of purpose
• Establishes strong relationships
• Benefits your community, and society at large

In fact, studies show that volunteers live longer and are healthier – what more can you ask for?

The best part is, it’s never too late to start volunteering. There are several great resources online nowadays, making it easier than ever to get involved. I promise, you’ll get more back than you ever imagined!

Following Sunday’s op-ed in the Erie Times News, I thought that I might share a mom’s perspective on employment. Ryan began volunteering at Bello’s Market, a family-owned grocery store and meat market in Erie, during high school. As with any “new” volunteer, there were “ups and downs” as he became familiar with the job and its expectations. Upon graduation, Mr. Bello asked him if he would be interested in continuing his work as a paid, part-time employee.
Of course, Ryan’s first response was, “Definitely, yes!” Like any of us, Ryan values his paycheck as the key to being able to enjoy his favorite activities, such as bowling, skiing, going to lunch, and going to the movies. So, Ryan began two mornings a week. As he became more proficient in his job, Mr. Bello asked him to work three mornings a week. Again, Ryan was really excited – more hours equal more money! And he still could go out to lunch and report to work at the Barber National Institute by 11:30.

Now, four years later… Mr. Bello recently asked him if he would be able to increase his hours two mornings a week. Surprisingly, Ryan’s first response was, “No!” I couldn’t understand why he would say no, given his excitement about additional hours in the past. Later that night, I asked him why. He quickly responded: “If I work more hours, I can’t go to lunch or I’ll be late for work at BNI.”I explained to him that his hours at BNI could be adjusted so that he could work the additional hours and still have time to go to lunch. He was thrilled to realize this and promptly Mr. Bello “Yes!” the next day.

Ryan’s unexpected initial reply prompted me to think more about the concept of Employment First. Many years ago, I learned that you can’t fit a square peg in a round hole, whether that is in education or the work force. While our goal remains to secure meaningful work for all individuals, we first need to consider the individual’s wants and needs; a full-time job may or may not be the best fit for everyone. I believe Ryan is a great example of that: he thoroughly enjoys working two part-time jobs – but also, treasures the lunch in between them!

Something momentous occurred in Pennsylvania a few weeks ago. No, it wasn’t the budget passage, although that was very important, too. As part of the celebration of Intellectual Disability Awareness Month, on March 10 Gov. Tom Wolf signed an executive order establishing an “employment first” policy for adults with disabilities in Pennsylvania

With “employment first,” competitive, integrated employment in the community is not only the preferred option, but the ultimate goal for people with disabilities. Wolf’s actions are in line with a critical priority from the U.S. Department of Labor, Office of Disability Employment Policy (ODEP), that calls on states to invest in systems that increase these opportunities. This mandate reflects growing support for a national movement centered on the premise that all citizens, including individuals with significant disabilities, are capable of full participation in integrated employment and community life.

Recall that before the 1970s, the majority of adults with intellectual disabilities were confined to institutions. Few people, if any, believed these individuals could live in the community, let alone be employed. Pennsylvania, with Erie’s Gertrude Barber in the forefront, led the charge to being adults out of institutions and back into the community.

However, living in the community did not necessarily mean having jobs that are completely integrated into the community. Most adults attend programs that emphasize activities to develop daily living skills, while others are in pre-vocational training programs.

The Workforce Innovation and Opportunity Act of 2014 created greater emphasis on the concept of supported employment that focuses on training individuals on the job with a job coach, helping to ensure success in the position.

In truth, this approach has been used with great success since 1986 at the Barber National Institute, demonstrating that adults with disabilities can indeed be valued, dedicated members of the competitive workforce. Over the past 30 years, the Barber National Institute has placed more than 500 adults with disabilities in jobs with local employers, including in food service, housekeeping, light manufacturing, retail and other industries.

On a national level, research tells us that every dollar spent on supported employment leads to a return of $1.46 for society. So we should not be surprised that supported employment is successful.

Yet, statistics show there is still much work to do. Unfortunately, only 20 percent of Pennsylvanians with a disability participate in the workforce, compared with 70 percent of people in the community at large.

How does being an employment first state affect us all? As we celebrate Autism Awareness Month in April, consider that approximately 50,000 adolescents with autism spectrum disorder turn 18 each year in the U.S. Without employment opportunities, these young people will be idly sitting at home, and yet they have the abilities to be doing so much more.

To reverse this situation, we have to establish a system in which training, also known as transition planning, occurs during high school if these students are to move ahead to the world of work upon graduation. This training begins with community work experiences, giving students a chance to experience the workforce, learn what they like and dislike, and interact socially with co-workers.

Being an employment first state is about believing that individuals with disabilities should have the opportunity to work alongside those without disabilities, giving them a fully integrated, and competitive, work experience, including equal wages and benefits. As an employment first state, the focus and the priorities of services will significantly change.

But in order to achieve these ambitious goals, it’s up to the community to embrace them. We need more employers who are willing to say, “Yes, I support employment first and I will offer job opportunities.”

I believe if any community in Pennsylvania — or the nation — can be successful, it is Erie.

Often, we don’t embrace what we don’t understand. Now, as we observe Autism Awareness Month, my hope in writing is to help the Erie community understand, and in turn embrace, this important initiative. We can be a community that supports one another and show that Erie, once again, is a leader in this culture change.