All About Autism

In this graduation season, there will be many commencement speeches made around the world. I always find this time particularly uplifting – a call to look to the future, to work hard for your dreams, and to never stop trying to achieve them. Recently, a friend sent me the transcript of Emory College’s keynote address, given by renowned epidemiologist William Foege. I was so moved by it that I wanted to share a briefer version of his incredible insights with you.

~Maureen

“Lessons I am Still Desperately Trying to Learn”

Chapter 1: Obituaries

Every day we edit our obituaries. It’s not until you get older that you realize how good a life has been. Consciously, edit your obituary each day so you may realize that sooner; edit with care and gusto.

Chapter 2: Life Plans

50 years ago, everyone’s advice was to develop a life plan. Times have changed. My advice? Avoid a life plan. You enter a world of infinite possibilities, confusing ideas and continuous changes. A life plan will only limit your future.

Chapter 3: Instead of a life plan, develop a life philosophy

And then you will have tools to evaluate every fork in the road. What is truly important to you?

Chapter 4: Integrate your world of knowledge

Become globalists, concentrated on the needs of the group rather than your own needs. Be good ancestors – remember the children of the future have given you’re their proxy and are asking for you to make good decisions. Because each of us can do so little, it’s important we do our part. It may be a little contribution, but we each have to make that contribution.

Chapter 5: Actively seek mentors

Identify people who have the traits, ideas, and philosophies you want and get their help, always asking “how best to live?” Borrow their wisdom. I’m in my eighties, and I still seek mentors. Many of them much younger than me.

Chapter 6: The world is expanding

For all the problems of the world, I tell you there has never been a better time to be alive and enjoy that. An example: you have been exposed to as much knowledge in one year of college as Aristotle was in his entire lifetime.

Chapter 7: Seek equity

I avoided dying of tuberculosis, food poisoning, toxic water because of a government and much more – not because I deserved it but because of a coalition of government, religious institutions, and public and private groups all conspiring to help me, born in this country. And your story is the same. So what can we do? Seek equity and justice so others can tell that story someday.

Chapter 8: Seek serendipity

We often think of serendipity as a random good fortune, but the original story tells about three men, finding small clues that other people missed, figured out where the lost camel of Serendip (now Sri Lanka) was. We are told this can be learned by living in the moment and looking for connections. Thoreau said: “It’s not what you look at that matters, it’s what you see.”

Chapter 9: Civilization

We like to feel we are civilized, but how do we measure that? All usual measures (science, wealth, education) fail, except one. How people treat each other. Kindness is the measure of a civilized person, of a civilized university, of a civilized state. It is the measure of a civilized nation. How you treat people is the healing force in the world.

And finally, Chapter 10: Finding our way home

In the book “Cutting for Stone,” there is an unforgettable line, and may this phrase stick with you forever: “Home is not where you are from. Home is where you are needed.”

As I congratulate you on what you have done, I also hope we all find our way home.

Read the full transcript here.

Congratulations to all of the 2017 graduates!!

Last night was a momentous evening at the Barber National Institute! We celebrated the 2016 graduation with over 70 preschool, elementary, and high school students. Each of our students comes to the stage and receives their diploma. A representative from the local school district presents their official diploma to the high school graduates. We close the program with our school song, which was written by one of our teachers (Julie) and her husband Chris, members of the band Tennessee Back Porch when Dr. Gertrude Barber passed away. It has been sung at every graduation since! There were only a few dry eyes in our crowd of 400 family members and friends of our graduates!

Celebrate What’s Different, By Chris & Julie Moore

There’s a light on the shore of Lake Erie

Through the fog of ignorance it shines

Where a future awaits every child

Yours and mine, yours and mine

Building on the dream of Gertrude Barber

That for everyone there is a place

Knowing the light is always there to guide us

On our way, on our way

And we’ll celebrate what’s different

Knowing we’re all the same

The dream of school and family has come true

You will learn from me, and I will learn from you

And we’ll spread the light to others every day

And the Barber National Institute’s the way

Certainly, no one would argue that a healthy lifestyle is an important goal for all individuals, both young and old. This National Physical Fitness & Sports Month is a great time to renew your commitment to a healthy, active lifestyle. Children with special needs in particular benefit from having a healthy influence in all aspects of their life: social, physical, and mental. The participation of children with disabilities in sports and recreational activities promotes inclusion, minimizes negative behavioral incidents, optimizes physical functioning, and enhances overall well-being. Despite these benefits, children with disabilities are more restricted in their participation, have lower levels of fitness, and have higher levels of obesity than their peers without disabilities.

Four years ago, I came across an article that mentioned a program aimed at teaching adults with disabilities how to ride a bicycle. I was unaware that many adults with disabilities were never presented with the opportunity to learn this skill many of us take for granted as children.

Thus, “Learn to Ride” Bike Camp was born. This Barber National Institute camp is a four-week program designed to help children develop skills to ride bicycles independently. Bike Camp is open to any youngster in the community who is able to pedal but who has not been successful riding without training wheels.

Going into our fourth consecutive summer, it has been wonderful to see such tremendous results. Nearly all students who participate in our bike camp are able to ride their bikes independently by the end of the four weeks – those that do not have still made remarkable progress towards reaching that objective.

Not in the Erie area? This blog post from 2015 does a wonderful job of sharing some pointers for teaching your child how to learn to ride a bike:http://www.huffingtonpost.ca/joanne-giacomini/special-needs-bike_b_8312246.html

Interested in starting your own “Learn to Ride” bike camp? Contact me for tips and plans on how!

In honor of National Mental Health Awareness Month, I asked Rochelle Von Hof, Ph.D., Director of Clinical Programming and Services at the Barber National Institute, to say a few words about her experiences in this vast and ever-changing field. 

~ Maureen

Dr. Rochelle Von Hof

Hello!  Let me take a minute to introduce myself.  My name is Dr. Rochelle Von Hof.  I am the Director of Clinical Services and Programming at the Barber National Institute.  I have been with the Institute since March 2011; however, I have been in the mental health field since 2004.  I have a passion for working with children, adolescents and families who have experienced trauma or have relational issues.  When I started my journey into mental health I had no idea that it would lead me into this direction.  Originally, when I started my career I thought I was going to be a teacher for special education.  Boy did that change!

When I first entered the field it seemed that anyone could get services and have these services for almost any length of time.  This is one of the biggest changes that I have seen in the field.  In the current world, it seems that it is difficult to get children approved for services.  I often hear of children being denied services or only getting part of their services approved.  This is something that I think is frightening due to the potential impact on the child’s recovery and overall wellbeing.  I feel that if a child is prescribed services by a psychologist or psychiatrist it is something that should be honored.

Outside of payment and authorization for services, one of the most positive growths I have seen in this field is the improvement of delivery of quality services and the view on trauma.  There has been a large focus on quality improvement initiatives and quality checks being conducted.  This is something that has grown since I began the field.  It is really nice to see that our auditors want to see that children and families in services are improving and that the clinician is clearly documenting this.  Quality is another passion of mine because I believe it is a quality service that drives an agency to be successful.  I believe that every individual being served should receive the same quality treatment no matter who the individual’s therapist is.

The view towards individuals who have been traumatized has also improved.  In some agencies they treat everyone as if they have experienced a traumatic event.  Other agencies, such as Barber National Institute, have become Certified Trauma Informed Learning Communities.  This is a movement to spread the word about trauma throughout the agency, to educate staff and clients about trauma, and to increase safety awareness.  Additionally there are evidence based models of treatment, such as Trauma Focused Cognitive Behavior Therapy (TF-CBT) and Eye Movement Desensitization Reprocessing (EMDR), empirically proven to help children, adolescents and adults recover from the traumatic event.

As the mental health community grows I would like to see more funding available for the children’s services.  I believe that the split between funding for adults and children is 80/20.  It would be nice to see the split in funding be closer to equal amongst the two populations.  If children have a better chance of getting services early in life than maybe they will not need as many services or intensive services later in life.

At the Barber National Institute we offer a variety of mental health services to children and families.  These services include Early Intervention, Behavioral Health Rehabilitation Services (BHRS), Family Based Mental Health, Acute Partial Hospitalization Program, Blended Case Management, and the Outpatient Clinic.  For adults the mental health services offered include Adult Behavior Specialists, Blended Case Management, Adult Partial Hospitalization Program, and the Outpatient Clinic.  All of our therapists are highly skilled and trained in a variety of backgrounds.  Our clinical therapists receive monthly trauma training and consultation from a local trauma specialist.  The therapists also receive training in family therapy.  Additional trainings are offered to the clinicians throughout the year as well.

It is important to seek mental health help if you feel that you are struggling with anxiety, depression, or even a recent change in your life.  Feel free to reach out to the Barber National Institute for an appointment or to help answer any questions you may have.

Dr. Von Hof joined the Barber National Institute in 2011 as a mobile therapist and behavior specialist, and also served as program director of the family based mental health program. Dr. Von Hof was awarded a doctoral degree in psychology from Walden University in January of 2017. Her dissertation focused on the effects of childhood trauma on family dynamics. A graduate of Mercyhurst University, where she received bachelor’s and master’s degrees, Von Hof completed additional training in family therapy, trauma focused cognitive behavior therapy and Parent Child Interaction Therapy (PCIT.)  She has extensive experience relating to the treatment of trauma and other mental health issues.

I recently had the opportunity to attend the conference “Treating OCD in the Autism Community,” sponsored by the Obsessive-Compulsive Foundation of Western Pennsylvania (OCDFWPA) and Autism Connections of PA. Going into the conference, my driving questions were: “How does OCD look in a person with autism? How do you differentiate the repetitive behaviors which we find in autism from OCD?”

As it turns out, this really was one of the major thrusts of the conference. I learned that in OCD, one has recurrent and persistent thoughts that are intrusive and unwanted. Often, the focus of these thoughts and behaviors centers on the themes of contamination, harm, hoarding, counting, and/or doubt. A person with an OCD wants to stop these thoughts from occurring and is significantly distressed about his/her inability to control these symptoms.

While the person with autism spectrum disorder often insist on sameness, adherence to routines, has highly restricted interests and focuses his thoughts and behaviors on repeating things and engaging in repetitive behaviors, in contrast to a person with OCD, a person with ASD is not bothered by his thoughts and behaviors, may not want to stop the thoughts, and may likely enjoy his specialized interests. With OCD, symptoms can wax and wane and the focus of the OCD can change over time. In persons with ASD, symptoms are typically recognized before 24 months of age, but may look differently at different stages of life. 

Ryan began exhibiting repetitive behaviors when he was only one year old. He thoroughly enjoyed opening and closing doors, whether it was the microwave, a cupboard door, or closet doors. I thought this was rather odd, but at the time I did not make the connection to autism. Another repetitive behavior he had very early on was an interest in walking the stairs. When we would go to my brother’s or sister’s houses, he would repeatedly walk up and down the stairs. I attributed this to the fact that stairs were a novelty to him, since we had no stairs in our home. Around the time Ryan was 18 months old, I began putting the pieces of the puzzle together and realized that I was seeing more than just a repetitive behavior. It was at this time that my brother, pediatric neurologist Joe Barber, completed an evaluation and gave Ryan the diagnosis of ASD.

Over the years, Ryan has always had some repetitive behaviors that, for him, are calming and reduce anxiety. What I learned at the conference was that these behaviors that I see are not OCD-related, but in fact another symptom of autism.

The OCDFWPA has a wealth of resources on their website, which I encourage you to review: http://www.ocfwpa.org/resources1.html.

I hope you all have a wonderful Mother’s Day this weekend!

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

Tracing autism’s trajectories could help explain its diversity

There is enormous variability in the developmental trajectories of children with autism, which shows how little we know about a child’s future at the time of diagnosis. Much of this uncertainty stems from how we study autism. Currently, the trend is to group children together based on features they share at a given point in time, and then assume that children within a particular group will share a similar developmental path. But children develop at different rates, and their individual developmental paths are rarely linear. In this new research article, scientists propose the term ‘chronogeneity’ to describe the heterogeneity of autism features over time.

Read the full article here.

Study Looks At How Autism Impacts Parents

Moms and dads of kids with autism spend less time together than couples with typically-developing children, new research suggests, but that doesn’t mean they don’t support one another. In a study looking at the day-to-day experiences of parents of kids on the spectrum, researchers found that such couples spend an average of 21 fewer minutes per day together.

Read the full article here.

Social-Emotional Skills in Early Childhood Support Workforce Success

Across the country, business executives have observed that too many employees and job applicants lack the “social-emotional skills” necessary to succeed on the job. This has consequences for the capability of businesses to compete in the global economy. Businesses need employees who can communicate well with coworkers or customers, collaborate to solve problems, and persevere to overcome challenges. The truth is, the foundation for these skills is laid in a child’s earliest years, as much of a child’s brain architecture is developed during the first five years of life. This directly impacts the development of the social and emotional capabilities that support long-term success in school and the workforce. In a recent Zogby Survey of 300 business decision-makers, 92% agreed that early childhood experiences affect the development of social-emotional skills later in life.

Read the full article here.

Tune in next month for an update on autism research!

Did you know that April is National Volunteer Month? Volunteering is essential to a healthy community – it creates ownership, builds relationships, fosters civic responsibility and fulfills vital needs. Thousands of people in the Erie community have given the gift of themselves by choosing to volunteer. While the Barber National Institute thrives from dozens of volunteers on a daily basis, I thought I would ask two of our long-time volunteers and friends a few questions about their love of volunteering. 

To all of our loyal friends, thank you for all you do each and every day to make the dreams of children and adults of the Barber National Institute come true!

~ Maureen

How long have you been volunteers?

We have been volunteers most of our adult lives. Judy started in the schools our two sons attended in Ohio, then with the local hospital auxiliary, on church committees and at the local library. She met Dr. Gertrude Barber when we moved to Erie in 1996 and she began volunteering at the then-Barber Center and is in her 20th year.

Jim’s volunteer career began in earnest when we moved to Lewistown, PA in 1981, where he was a member and, at the time, chair of the boards of the local hospital and economic development corporation. Since living in Erie he has volunteered as a board member with United Way, VisitErie, Erie Regional Chamber and Growth Partnership, Athena, Erie Together, and most recently, Erie Arts and Culture.

Judy and Jim share two other volunteer activities. They are both members of the Erie Regional Library Foundation board and are eucharistic ministers at St. Jude the Apostle Church.

What inspired you to begin volunteering?

We are both inspired by the belief that we have a responsibility to help those in need and to give back to the community that enabled us to earn a living. Judy likes to look where there is a need to fill a spot not covered by staff. Jim is inspired by the challenge of helping bring people together to build organizations devoted to the community’s greater good.

What do you look for when selecting a place to volunteer with?

When we look to volunteer, we first decide what interests us, and more importantly, what moves us when we see a need. Then we talk to friends who might know something about where our time and talents might fit best. Reaching out to places that might be a good fit for them and us as volunteers, we then explore what needs to be done, and how that matches our skill sets and available time.

What have you learned as a result of being a volunteer?

Both of us have learned that there are so many caring people, both staff and other volunteers, in the organizations where we choose to volunteer our time. We also know that we get back far more than we give in our volunteer services. For example, at the Barber National Institute Judy enjoys seeing that what she does as a volunteer pleases and makes things easier for the staff she works with. And Jim, who tutors in the Adult Basic Education classes at the Barber National Institute, gets as excited as his students when they succeed in the classroom and are able to carry that success into their everyday lives.

What is one thing you wish more people understood about volunteering?

We wish more people, including retirees like ourselves, realized how easy it is to volunteer. You can decide how little or how much time you want to spend, and you will be welcomed. The need for volunteers always exceeds the supply, And we promise that when each time you volunteer comes to an end, you will feel good about being able to give back to others and that what you have contributed in time and talent has made a difference.

This Saturday, I’ll be walking in my 16^th annual walk for Autism. When I started, Ryan was in first grade. He received a diagnosis of autism when he was 18 months old. When I heard about the first walk, I knew that Ryan and I would definitely be there. I wanted to walk:

• In encouragement of Erie’s children and families impacted by autism
• In appreciation for the outstanding services available for children with autism
• To expand awareness of autism
• To let parents who just received an autism diagnosis know they are not alone
• In thanks for the overwhelming support I have received from my friends and family
• To help boost autism research
• To express my gratitude to the many individuals who have helped Ryan

Ryan at one of his earliest walks

Amazingly, after 16 years, on Saturday I will be walking for these same reasons. However, I do have some new additions:

• In honor of the thousands of adults with autism graduating from school and entering the world of work
• To enlighten employers of our community on how employees with autism can become wonderful assets to their companies
• To reacquaint myself with children and families who once attended our school and have now moved on to exciting new educational opportunities but are always a part of the Barber National Institute family

This day, along with dozens of others across the country, is a strong statement to the world of the compassion, conviction, and commitment of individuals from many walks of life to autism.

To register for the 16th annual Autism Society of NWPA’s Walk, visit:

http://nwpa-asa.org/events/walk-information/

As we mark Autism Awareness Month this April, there is great hope that 2017 will become a banner year for adults on the autism spectrum.  The optimism arises from the draft budget that Gov. Tom Wolf has submitted to the Pennsylvania Legislature, which includes significant changes to two major sources of government funding for individuals with autism and their families.

The funding is described in legislation known as a waiver, specifically the Person/Family Directed Services waiver and the Consolidated waiver.  Historically, this waiver funding has only been available to individuals with intellectual disabilities.  When children with autism turn 21 years of age and graduate from school, they are no longer eligible to receive any government-supported sources of funding.   In other words, young adults are not eligible to receive most services that would help them train for and locate a job, live independently or even receive vital therapies or other supports. As autism has become the fastest growing disability in America, this means that thousands of young adults suddenly find themselves without the help they need.

The changes Gov. Wolf has proposed for these waivers, and the funding they provide, would expand the eligibility for services to include people with a diagnosis of autism who do not have an intellectual disability.

In essence, the waivers work by enabling Pennsylvania to receive federal funds that will match the amount designated by the state. This funding can then be used by the individuals and their families in numerous ways, whether by covering the costs of a job coach, of residential living arrangements, community-based services, and much more. Now, not only will people with an intellectual disability be eligible for this funding, but individuals with autism will as well.

You might be thinking that this change will affect only a small percentage of our state’s citizens, but what Gov. Wolf has tapped into is, in fact, a national issue. Currently, 3.5 million Americans are diagnosed with ASD; an estimated 40% – 50% of these individuals do not have an intellectual disability that made them eligible for services under the current waivers.

I applaud Governor Wolf’s inclusion of these waiver expansions in his budget; he is blazing a trail I hope the rest of our nation will follow. Make no mistake, the efforts required to continue down this path are enormous. On one hand, we must strive to search for and make the most efficient use of our scare societal resources. However, we must continuously seek to grow and expand these resources as we prepare for the thousands of children with autism in our country who will soon be entering adulthood.

Being prepared to meet this need will require some creative and, more importantly, collaborative thinking across services and sectors in various service systems.  One such example is Gov. Wolf’s proposal to create a Department of Health and Human Services that will combine the departments of Human Services, Health, Aging, and Drug and Alcohol Programs to streamline services and hopefully reduce costs.

Gov. Wolf’s budget will move Pennsylvania forward in this critical social issue, supporting individuals and families with autism, and leading to a real difference in the opportunities they will have in our state. Let’s show the governor our support by contacting our local legislators and encouraging them to vote “Yes.”

As a parent of a child with a disability, one of the thoughts I had throughout Ryan’s educational career was, “Will he be prepared for life after school?” Thinking back, Ryan was seven years old when my brother, pediatric neurologist Dr. Joe Barber, said: “It’s important to begin planning for transition now, and not to wait until he’s in high school.” At first, I was taken aback; but the more I thought about this concept, I knew he was right. So, at each of his IEP meetings I would always preface the discussion by saying, “What we are planning today needs to address what he will need when he turns 18.” I do believe that Ryan was better prepared than most because of my continued focus on preparation.

The recently published findings of a 2012 study, exploring the characteristics and experiences of 13,000 students between ages 13-21, suggest
some disturbing facts surrounding this issue:

• Youth with an IEP are more likely than the
  ir peers to be socio-economically disadvantaged and to face problems with health and communication
• This same group is also more likely than any other youth group to struggle academically, yet by contrast, they are less likely some form of school-based support
• Five groups – Youth with autism; intellectual disabilities; multiple disabilities; deaf/blindness; orthopedic impairments – appear to be at a higher risk than all other youth for challenges in making successful transition from high school

What is most startling to me is that for many years we have drawn attention to the importance of transition for students with disabilities, yet these statistics would indicate that our success has been minimal.  Is this occurring because we have insufficient funding? Perhaps we have not dedicated sufficient focus to the policies that would have decreased, if not eradicated, this problem. Whatever the underlying issue, we must renew our attention to this important area to provide greater support to these students.