Conducted by David Celiberti, PhD, BCBA-D
President, Association for Science in Autism Treatment
I am pleased to have this opportunity to interview you, the newest member of ASAT’s Board of Directors. As you know from my letter, as we look to this new year, we are in the process of assessing and improving upon the extent to which ASAT’s efforts support consumers living with or serving adults with autism, an often neglected segment of the autism community. I know you will be instrumental in helping us in this endeavor, and look forward to working with you in the years ahead. Prior to responding to questions specific to your own journey in autism, I was hoping you could share a bit about your professional background.
Very early in my career, and after completing my Masters Degree in Psychology, it was my intention to pursue a private clinical practice. So I initially started working in private industry in order to provide financial support for my continued studies and to pursue my passion for clinical work. Ironically, when I entered the private sector, I found that I enjoyed working with organizations to bring about important changes. At that point, I altered my educational direction, and completed my MBA and Doctorate in Business. After stints in sales and marketing, I began to work, first internally, and for the last ten years, as a consultant in the area of organizational development. I enjoy working at the senior level within organizations, as this allows me to design and facilitate leadership team development, strategic visioning, transformational change and organizational diagnostics initiatives.
Q: That sounds like an incredible and exciting career path. So many autism organizations fail, or are unable to realize their fullest potential, due either to a lack of focus or to goals that are unreachable. We would like to learn more about the first chapter of your personal journey with a child with autism. Your son, Brandon, was diagnosed 18 years ago. What was that experience like for your family?
A: I have three beautiful children; my youngest son, Brandon, was diagnosed at the age of two. Initially, I thought he was the most clever of my three very clever children. Then, I began to see his skills slip away. There is no question that the diagnosis of autism affects the parents and family in a very deep and profound way. And clearly the impact and the reaction to the diagnosis show up in different ways for everyone. I distinctly remember thinking to myself within days of Brandon’s diagnosis, that feeling angry and sorry for myself and asking, “Why me?” was not going to help anyone — certainly not my son.
So I hopped on a plane and headed out to UCLA to see Ivar Lovaas, and then up to New Jersey to visit some of its outstanding educational programs, including Princeton Child Development Institute, The Alpine Learning Group, Eden Services and the Douglass Developmental Disabilities Center. I read everything I could get my hands on. And for me, decisions regarding the most appropriate intervention for my son had to be driven by data. I needed to understand which programs could demonstrate evidence-based outcomes. And I believed — and still believe — that the only intervention that met my criteria, and that was most appropriate for my son, was based on applied behavior analysis.
I organized a handful of families to schedule Dr. Lovaas to come to Florida (where we lived at the time) to train parents and instructors. Brandon began a 40 -hour –a- week home program at age two, and has had the opportunity to work with many very talented ABA professionals over the last 18 years.
Q: How has your professional background shaped your experiences as an advocate for your son and other young people with autism?
A: Soon after Brandon’s diagnosis, I founded several organizations. The first of my endeavors was Reaching Potentials, a non-profit organization focused on early intervention, and parent and staff training. I am proud to say that this organization, thanks to the leadership of Pam Gorski, continues to provide great value to the field. I also founded Global Communities of Support, which provides support and services for teens and adults with autism. GCoS is currently partnering with Ryder University to create community programs for young adults with autism, and is also working with Allies Incorporated to establish additional residential options for adults with autism.
Most recently my focus has been on trying to construct a more abundant approach to collaboration within the autism community. My initial design and participation in Advancing Futures for Adults with Autism was, in part, a way to demonstrate the power of that approach. Working together, 14 of the leading autism organizations started a meaningful national dialogue about adults with autism. We conducted a think tank that included the leading experts in the field, a National Town Hall that brought 1,200 voices of various stakeholder groups together across 16 cities, and finally convened in Washington D.C. to deliver a National Agenda for Adults with Autism. And my latest initiative, Aging with Autism, is focused on creating a community of practice, and on addressing the challenges and needs of individuals with classic autism.
There is no question that my professional skills continue to inform my advocacy work. I think the ability to take the “long view” is critical in creating any sustainable and meaningful change. That, along with thinking strategically about vision and mission, is critical. And finally, once that work is done, the ability to implement a disciplined action plan that really makes a difference in people’s lives is easier. I learned early on that advocating for my son gave me the opportunity, in fact, to advocate for the larger community. The opportunity to support all of the other “Brandons” has brought me great joy. I continue to learn from the parents and professionals in the field and to be impressed by their commitment and passion for this important work.
Q: Eighteen years ago you witnessed a rapidly changing landscape of services at the early intervention level. As Brandon grew older, you have found yourself in unchartered terrain once again. What is your perspective on the state of adult services today? In your view, what needs to change and how can that change come about?
A: Well, I started working on adult services in 2001 when Brandon was eleven. But I really started thinking about adult services when he was a younger child. Concerns about his future and the question of what happens to him when I am no longer able to care for him, is what kept me up at night.
The reality is that the planning process for your child’s future should start early. The challenge for families caring for an individual with autism is that the work is so hard that making it through each day takes all of your energy. In fact for many, it takes more energy than is available, and so the impact on families is devastating.
The other big hurdle in creating effective programs and services for adults is that it is a lot easier to raise ASAT money and interest to support a cute two-year old that is the picture of hope and potential than an adult whose very behavior often makes people uncomfortable. So, when I think about the work of creating quality programs and services for adults with autism, it does take me back to my original efforts to create effective early intervention programs.
The current state of services for adults is a significant concern. There are a handful of programs across the country that are quite good. The need for services is so great, with long waiting lists in every state in the country. The increase in prevalence of autism has created a tremendous demand for services that could be compared to the impact of baby boomers moving through the general population.
There are definitely some pockets of excellence that exist. There are talented parents and other professionals that are passionately focused on creating programs and services that will provide the opportunity for full and meaningful lives for adults with autism. There is a strong group of advocates who believe that with the right level of support, adults with autism, regardless of the severity of their cognitive or behavioral involvement, can participate as fully functioning, competent members of society. And I truly believe that once we see that vision clearly, we will be able to make it a reality. My hope is that AFAA has opened the conversation. We now must continue our research, pilot new and innovative models and replicate those programs that demonstrate best practices and positive outcomes.
Q: Tell us more about your newest organization.
A: In 2008, Brandon, who was then 18 years old, began exhibiting self-injurious behavior that resulted in several hospitalizations and ultimately 18 months in a state developmental center. He became so seriously ill that we almost lost him. I began to meet with agencies, organizations and elected officials both at a state and national level. I discovered that there were few services available to serve individuals with classic autism — those most severely involved, often with complex and challenging behaviors. Sadly, it still took a year and half to get my son into an appropriate placement in the community.
The reality that I couldn’t escape was that if I had so much difficulty in finding services for my son, many families who were less prepared to navigate the system would be left completely without hope. Many individuals with autism would fall through the cracks. It was at this point I dedicated myself to creating a system of supports for families in crisis.
We are talking about the most vulnerable on the autism spectrum, and we know so little about them. We have few programs and services that are designed to meet their unique needs. I feel strongly that we must shine a light on these individuals, challenge our assumptions and begin to create new and innovative programs that are about seeing the potential that lives within each one of them. So it was with these individuals and their families in mind that I founded Aging with Autism (www.agingwithautism.org).
The other focus of Aging with Autism is to create an online community of support. AWA website is a manifestation of the abundance mentality that I mentioned earlier. The website features other autism organizations that are doing important work in the field. Visitors to the site can review the purpose and visions of these other organizations, but they can also donate to these other organizations on the Aging with Autism website if their missions resonate with them.
Q: We look forward to seeing how the future unfolds for Aging with Autism and applaud your efforts to better meet the needs of adults with autism and those who are more classically or significantly impacted by autism. If you could do anything different raising and advocating for your son what would be it?
A: Well, there is no question that I have been sprinting in a marathon. And certainly intellectually, that doesn’t make sense. But I’m quite sure that if I had it to do over again, I’d probably do it the same way. Not that there is a right or wrong way to react to this challenge, but for me it would have to be about being fully engaged.
With that said, in retrospect, rather than compartmentalize my career, my advocacy and my life, I think it would have made sense for me to find a way to combine the three more effectively. And of course, as a parent, you want to have as much quality time as possible with your children. And there is no question that advocacy takes time. I have thought a lot about the commitment I have made to advocacy. Should I have focused in a more singular way on the needs of my son?
And this is the way I process that choice. I believe that my advocacy has benefited my son by bringing new resources to his life. It has benefited my work with him and my own personal growth through connecting with other powerful and passionate parent and professional advocates. And of course, to get a letter from a parent that has benefited in some way from your work is priceless.
Q: Any advice for parents of newly-diagnosed children?
A: Yes, I do have a few suggestions:
- Become an autism expert. Learn as much as you can.
- Be a discriminating consumer of products, programs and services. Examine outcomes – require and make sure you understand the data.
- Understand and challenge any assumptions about your child that limits him or her. You are the expert on and voice of your child. Build an effective team of professionals for your child, but you drive the process.
- Work with other families; they have similar needs and can be a great source of information and support. Together you can do more.
- And even though this is a huge challenge and it often feels like you have to take it one day at a time, find those moments when you have just a little bit of reserve energy. Use this time to take the long view.
- Autism is a lifelong disability. Lifelong planning is critical to providing quality lifelong support. This means seeking legal and financial advice. It also means creating a vision for what your child’s life can look like at its best and creating a plan to make that a reality.
- And finally take a deep breath; take lots of deep breaths. Take care of yourself and if you have a partner in this journey, take care of each other. You can do this!
Citation for this article:
Celiberti, D. (2011). ASAT welcomes Dr. Cyndy Hayes as its newest board member with an interview by David Celiberti, PhD, BCBA-D. Science in Autism Treatment, 8(1), 1-4.