Autism—A Family’s Journey and the Lights Along the Way

Note: April is National Autism Awareness Month.

Carolyn Hayer with son Chris and their family

Carolyn Hayer with son Chris and their family


Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, a federally funded Parent Training and Information Center.


Autism.

There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.

I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.

As I reflect on the past 30 years I recall so many memories.I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.

I remember…calling anyone and everyone I thought might help my family; the feelings of isolation at the playground, Sunday school, birthday parties, and all the other places where we just never seemed to fit in; the stress before every outing, wondering if there would be a meltdown or some other embarrassing event; wondering if my marriage would survive the stress; and the feelings of inadequacy for not parenting my children the way I thought I should have.

I remember the fear, guilt, and sheer terror of not knowing where my child was that day when he wandered off. But I also remember the intense relief and gratitude I felt when he was found.

I remember the vast uncertainty I felt when Chris was diagnosed, wondering what his life would be like as he grew to adulthood. And now that we have reached that point, I want to share some of the bright lights we encountered along the way, especially for those of you who may be new to the journey.

When he was four, I remember watching Chris climb aboard the school bus to begin the 45-minute ride to his “special” school. My gut told me that he needed to be with his community friends, and I spent years trying to persuade my school district to serve him in our local school. I learned about Chris’ right to be included with his neighborhood peers when I attended a workshop hosted by the New Jersey Statewide Parent Advocacy Network (SPAN), our state’s federally funded Parent Training and Information Center. SPAN became one of the bright lights on our path. The information our family received from SPAN allowed us to develop an IEP (individualized education program) that brought Chris back to our home district for high school. I remember watching anxiously as he disappeared into the building on his first day of high school, also his first day of school in a general education setting. Despite my concerns, I remember how kind and supportive Chris’ peers were to him; serving as beacons lighting our journey. I remember Chris learning math, reading, and how to play an instrument—things I was told he wouldn’t be able to do—and working with teachers who never gave up on him. And I will never forget, four years later, watching him climb into a limo with friends to attend the senior prom. My heart was so full of happiness and pride I thought it would burst.

This journey has taught me a great deal; autism has been my teacher for some of life’s most important lessons:

Gratitude.

Autism helps you to be grateful for the small things, the things you might have overlooked had they not been such a struggle to achieve: hugs, first words, friends, independence, general happiness and physical health. I’ve learned to take nothing for granted.

Community.

I continue to be in awe of, and inspired by, all the people we’ve met on this journey, most of whom have gone out of their way to help us any way they could: doctors, teachers, therapists, neighbors, friends, strangers, other families on the same path, and my colleagues at SPAN. Today, Chris has a circle of support that makes it possible for him to live a full, rich life. My husband and I appreciate the love and support of family; siblings have been caretakers and cheerleaders, and extended family members step up and help, no questions asked. Autism has taught me that I can’t do it all alone, no matter how hard I try. We need the support of others and must learn to accept it graciously.

Courage.

Fear is an everyday struggle on this journey. I fear what will happen today and in the near future, and dread what might happen to my child when I’m not able to care for him. I feel trepidation in trying something new, and doubt with every life decision. But sometimes I must take a leap of faith. In this, I have always been rewarded, either with success or increased knowledge, both very valuable. I have learned to trust in myself and follow my gut.

Forgiveness.

Of yourself and others. Don’t hold onto past mistakes and don’t carry the burden of anger and resentment toward others. Learn to let go, learn from your experiences, and move on.

Humor.

Laugh at yourself and your circumstances. Laughing releases endorphins and helps you feel good. We can learn a lot by seeing the world through a different lens and by not taking things—or ourselves—too seriously.

In closing, what I want to share with you more than anything is how immensely proud I am of Chris and all he has accomplished. He is a 30-year-old man living with autism, working and volunteering in the community, and often struggling to find his voice and get by in a world that can be overwhelming for him. Yet he manages to do it with dignity and grace, with unwavering support from the circle of love and light that surrounds him—his parents, siblings, and extended family; his peers, support staff, and therapists; our neighbors and friends. I shall always be thankful for Chris and the guiding lights that autism brought into our lives.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Another Journey

Note: April is National Autism Awareness Month.

The Bae family during trip to England

The Bae family during trip to England

Just like any other school day, Eugene, my son with autism, left on the bus this morning to go to a day program provided by our school district. For the last 20 years, he and I wait for the bus by sitting on our front porch. As he steps on the bus, he shouts at me with his happy high-pitched voice, “Bye Mom!” This is our ritual to begin each new day, to meet that day’s challenges, emotions, promises, and hopes.

In June this year, he will age out from the district program. I cannot help being emotional whenever I think about his first day of preschool and the journey that Eugene and our family have been on since then. On that day, I cried in the car for two hours after separating from my miserable, crying child.

Since that first day, school has been a challenging place for both Eugene and me. While Eugene was learning the alphabet and phonics, I studied the never-ending list of special education acronyms.

Just like other special education moms in this world, when my child cried about his school work, I wept on my steering wheel, but when he was happy in school, I felt like I had the world on a string. At times, figuring out how to navigate the world of special education for our son with autism while struggling with his atypical behaviors seemed like a brutal mission for a family like us, and we often felt we were not understood, not just because of our heavy Korean accents

However, our fundamental concern has not changed in these 20 years, and that is to help our son reach the final destination for his journey—Eugene being able to live an independent and inclusive life in the community. Of course, this is the same concern shared by thousands of moms and dads who have children with disabilities.

Young and Eugene Bae

Young and Eugene Bae

As a family we have had to adjust the sails of our ship quite a lot to reach this destination. We had to get past phrases like “below average range” or “socially maladjusted” since they were not helpful in steering the path for our son. As a family, we now see more clearly the incredible strengths and positive qualities of a young man who is able to say proudly “I am a person with autism.” We have learned that it is more helpful for us to make sure that Eugene is in the center of all service plans than putting systems first and having him fit around these systems.

Because of putting Eugene at the center, we have become more efficient in figuring out how to change the world around us and finding the resources we and Eugene need to reach our goal. As Eugene grew, our family grew too and our minds opened up to the new experiences that our son brought us.

I am not completely positive about Eugene’s future in the community. I see and feel the gaps between how my family and how society see the possibility of Eugene becoming a “successful” member of the community, and how we define success.

Many people still have a difficult time moving away from the stereotype that measures people with autism and other developmental disabilities as a social cost. However, I also believe that our society is moving in a better direction, becoming more able to envision a person with a disability as a valuable asset.

We have witnessed the notably increased capacity of our schools and workplaces to accommodate individuals with disabilities since the first form of the Individuals with Disabilities Education Act became law in 1975. These accomplishments were not possible without the sacrifices and efforts of so many parents, educators, and leaders of this country. Today, their legacy continues through the next generation of families, educators, and leaders, and it only expands as we as a family sail toward the final destination of our journey.

The next three months will be an interesting time for our family. Frankly, it makes me nervous thinking that Eugene will no longer be in the classroom. There will be no more IEP meetings to attend and no school buses to pick him up.

Eugene and our family know that this is a start of the next stage of journey. However, this time, Eugene will be the captain of the ship, steering us toward that goal of independence and community inclusion. This time, I am not crying; I will take a deep breath to prepare myself for another thrilling sea of possibilities and opportunities.


Young Seh Bae, Ph.D. is Executive Director of Community Inclusion & Development Alliance (CIDA) a federally funded Community Parent Resource Center in Queens, New York. She was a faculty member of Teachers College, Columbia University, and served as president of Korean-American Behavioral Health Association.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Evidence-based Practice and Autism

Note: April is National Autism Awareness Month.

Evidence-based Practice cake


Katie is an 18-month-old who does not respond when her mother calls her name, likes to watch spinning objects, and does not use words or gestures to communicate.

Jose is a 17-year-old student who gets stellar grades in all his courses, started the cyber security club in his high school, but he does not have anyone he can call his friend.

This toddler and teenager reflect the continuum of abilities and disabilities that is autism spectrum disorder (ASD).

As a society, we in the United States are doing a truly remarkable thing. We have made a commitment to provide an appropriate educational program in the least restrictive environment for children and youth with ASD and other disabilities, and to make sure that the practices in these programs are based on evidence of effectiveness.

But, where do teachers, other practitioners, and parents look to find out which practices are based on research evidence? We would not expect them to go to the research journals to search out the practices that work.

In 2007, the Office of Special Education Programs (OSEP) funded the National Professional Development Center on ASD (NPDC) to promote practitioners’ use of evidence-based practices. One of the first activities of the center was to conduct a comprehensive review of the focused intervention research literature. NPDC conducted an updated review in 2014. The review screened 29,000 articles on autism and identified 27 practices as evidence-based.

To identify interventions or teaching strategies by name and definition is not enough information to prepare teachers and others to use them in their work with children and youth with ASD. They need to be translated into specific, practical descriptions, with examples of how to use the practices to support learning and development.

With funding from OSEP, NPDC investigators created online modules for all of the 27 practices. The modules contain clear directions about how to implement practices and include video examples, fidelity checklists, and downloadable PDFs for all the module content. The website is free and has over 45,000 registered users to date.

It has become a major source of information about evidence-based practice for children and youth with ASD in this country and around the world. For example, over 400 teachers are part of the CAPTAIN Project in California and they are committed to incorporating these practices into their programs for children with ASD. The SOTIS program in Warsaw, Poland is using these practices in multiple autism preschool centers. Individuals from China, Italy, Saudi Arabia, Morocco, and Poland have voiced interest in translating the practices into their native language.

Knowledge about effective interventions does not stand still. In the years since the last review ended in 2011, we have located over 26,000 articles published on autism intervention and have launched an update of our previous review through the new National Clearinghouse on Autism Research and Practice at the Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill.

Over 150 reviewers are currently evaluating the quality of research articles to be included in this updated review. There is always new work to be done in this area and, pending funding, we hope to extend the review to interventions that have been conducted with adults with ASD and to conduct an annual update to the evidence base, including updating the online modules with new information from the research literature.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Project ASD: Special Educator Preparation in Autism Spectrum Disorders

Note: April is National Autism Awareness Month.

Supporting Children and Youth with Autism

April is Autism Awareness Month, and a perfect time to highlight the OSEP-funded Project Autism Spectrum Disorders (ASD) at the University of Central Florida (UCF). Since 2004, this innovative personnel preparation project has been addressing the critical need for special educators prepared to serve the increasing numbers of children identified with ASD. A nationwide listing of teacher shortage areas revealed 48 states reporting shortages of special education teachers for the 2016–17 school year, with many states identifying the specific need for special educators prepared to serve students with autism.

What is Project ASD?

Two federal personnel development projects currently support Project ASD at UCF, projects ASD IV, funded 2014–18, and ASD V, funded 2016–20.They represent the culmination of over a decade of research focused on teacher preparation in ASD. Project ASD’s graduate program addresses persistent gaps in services, including the need to (a) increase the number of highly effective special educators serving students with ASD, and (b) prepare special educators with specialized knowledge and competencies for working with students with ASD. Project ASD addresses identified gaps by implementing three primary goals:

  1. Recruit high-quality graduate-level scholars including traditionally underrepresented groups with potential to become highly effective special educators for students with ASD.
  2. Prepare scholars in an evidence-based special education program that includes field experiences in urban, high-poverty settings, and leads to state certification in Exceptional Student Education (ESE) and endorsement in ASD.
  3. Retain scholars through completion of the program and induction into the profession through ongoing advisement, financial and academic support, and mentorship.

Master’s Degree and Certification in ESE and ASD

Project ASD has supported over 300 scholars in earning a master’s degree and full certification in ESE, and State Endorsement in Autism. The success of the project can be attributed to ongoing collaboration between university faculty, school district personnel, agencies, and families. Project ASD employs a multi-faceted recruitment model targeting exceptional scholars dedicated to the field of special education, including those from traditionally underrepresented groups. Scholars receive support to complete a graduate program of study, which prepares them to implement evidence-based practices for students with ASD to increase student achievement across domains including academic, communication, social-emotional, independent functioning, and vocational. Project ASD also hosts a Mentor Demonstration Classroom program that features project graduates who understand the challenges of the master’s program, and the unique needs of beginning special educators in classrooms for students with ASD. These exemplary teachers provide video demonstrations, serve as guest speakers, and open their classrooms to provide Project ASD scholars with opportunities to integrate coursework and field experience.

In addition to its close work with scholars at UCF, Project ASD disseminates information related to teacher preparation in ASD through publications as well as numerous presentations at state and national conferences. Teacher Education and Special Education recently published an article featuring Project ASD’s Quality Indicators for Classrooms Serving Students With ASD instrument. For further information, visit the Project ASD website, or contact the project directors at projectasd@ucf.edu


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Eleazar Vasquez III, Director and Associate Professor for the Toni Jennings Exceptional Education Institute
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Director and Associate Professor for the Toni Jennings Exceptional Education Institute
Cynthia Pearl
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Faculty Administrator in the Exceptional Education Program
Matthew T. Marino, Professor in the Exceptional Education Program
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Professor in the Exceptional Education Program

“When You Look, Make Sure You See”

Dwayne, Julian, Martina and Jared Ballen. (Photo courtesy of the Ballen family.)

Dwayne, Julian, Martina and Jared Ballen.
(Photo courtesy of the Ballen family.)

A few years ago my sons Julian and Jared attended tennis camp at the University of North Carolina. During the camp’s awards ceremony, tennis coach Sam Paul announced that counselors and campers unanimously agreed Julian clearly won the category for best attitude.

Coach Paul quickly realized during the camp that Julian, who has autism, was not at the same athletic level as other campers, many of whom were younger and more skilled. At the same time, he had something valuable to contribute.

Coach Paul took the time to not just “look “but “see” Julian, and what he witnessed, he later told me, left an impact. No matter the task facing Julian, it was always carried out with a smile and cheerful readiness. He also noticed the positive effect Julian’s presence had on other youngsters.

A number of the campers began to take attitude cues from Julian. In a couple of instances, a potential tantrum was replaced with a more reflective, and productive reaction. It was the Julian effect in full flower.

What Coach Paul engaged in that week was inclusion. He had no professional training for it, nor was he necessarily pre-disposed to do so. He simply wanted Julian to have the same experience as the other children attending camp. Inclusion should be practiced throughout society and not just confined to those areas where special programs and trained professionals are in place.

My brother Michael provided another clear example of inclusion during our family’s 2013 Thanksgiving gathering at his house. During a post-meal trivia game, Michael announced that he wanted Julian as his partner. The subject of the afternoon was Disney trivia. Michael was acutely aware of Julian’s passion for all things Disney, especially the animated movies and theme parks.

Julian, full of excitement and a staggering amount of Disney knowledge, was the star as he and my brother destroyed a team comprised of five other family members. Michael, a municipal police department official, found a way to bring his nephew out of the corner and to the table of engagement. All it took was recognition and desire. That is inclusion.

My wonderful wife, Martina, and I have always believed that inclusion is a full family endeavor that takes all forms. Julian does the same amount of chores his brother Jared does. If one takes out the trash then the other is expected to roll out the recycle bin. Julian is expected to clear his dinner placement and put the dishes in the washer. He has responsibilities that fit with his capabilities, just like his brother. This too, is inclusion.

I’m hopeful that we all consider opportunities to practice inclusion in everyday life. It begins with the simple idea of, “When you look, make sure you see.” It’s also important to understand that inclusion is not just a one-way street. Those being included often have something to teach us about ourselves and the human community. I’m sure Coach Paul would wholeheartedly agree.

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Author of ‘Journey With Julian’, an autism advocate and speaker, and a network television sportscaster with the CBS Sports Network.

Know It 2 Own It: Advocating for Your Rights on Campus

As we approach the end of the school year, most high school seniors are preparing for graduation and their future. At this time, I’m reminded that each passing year, more and more students with autism and other disabilities are attending college with their peers. For many of them this will be their first time away from home, a time for excitement and a time for independence. It will also be the first time where they will be responsible to advocate for their own needs at school.

The transition from high school to college can be tough, especially for students with disabilities; however, when students know their rights and where to get help, the transition can be made a little easier. Some students, such as Elijah a high school senior from Jacksonville, Florida, learn the importance of advocating for themselves and their needs for accommodations while still in high school. Here is his story and his wish for all students with disabilities.

A student’s ability to advocate for himself is important to succeed at the college level. Every year, I have an opportunity to meet and work with a group of about 15 autistic college students from various backgrounds and ranging in age. Some of them are traditional college students, others are accessing college through a Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) program or a modified course of study. All of them say the same thing – it can be hard.

Part of my job at the Autistic Self Advocacy Network is to provide incoming students with training in self-advocacy through our Autism Campus Inclusion program and give them the tools and resources they need in order to effectively advocate for themselves and get the most out of their college experience.

Under the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, colleges and universities are required to remove any barriers impeding the student, whether these are architectural, communication related, or transportation and to provide reasonable modifications to rules, policies, or practices. It is, however, the student’s responsibility to know his or her rights and how to advocate for appropriate accommodations. These accommodations could include:

  • Wearing noise-cancelling headphones in class,
  • Using laptops for note-taking
  • A place to doodle, fidget, pace, or sit on the floor in order to focus and learn.
  • Live in a single dorm room, even as a freshman if needed
  • A quiet testing space
  • Alternative formats of classroom materials, textbooks, and tests

In addition to getting the word out about self-advocacy, we’ve created resources such as Navigating College and Autism Campus Inclusion (ACI) to assist students with disabilities as they navigate through higher education.

Autistic and other students with disabilities will often face barriers from the day they set foot on campus. In order for these students to succeed in college, we say, self-advocacy is needed. You have to know your rights, have a plan for getting the accommodations and modifications that are appropriate and needed, and be prepared to face an array of challenges. However, by creating a community on campus and bringing students together to share their experiences we remind one another that self-advocacy is easiest when we know we aren’t alone.


The opinions expressed and materials contained in this blog are not an endorsement by the U.S Department of Education and herein do not necessarily reflect the position or policy of the United States Department of Education.