ASAT
Meet our Board Members
Meet our Board Members: Interview with Long-Time ASAT Board Member, Joe Forgione, MBA
Conducted by David Celiberti, PhD, BCBA-D
President, Association for Science in Autism Treatment
Joe, it is a pleasure to interview you for this issue of Science in Autism Treatment, as you are the longest-serving member of the current ASAT board. You have been involved with ASAT since the early years and have actively participated in its growth and development.
Q: As you know, many board members of organizations like ASAT are professionals who have chosen autism treatment as their career path. On the other hand, other members of our board are parents of children with autism who obviously did not choose this path, but the events of their lives have led them in this particular direction. You are neither a professional in the field nor a parent of a child with autism, however, your commitment to ASAT, its mission, and science-based treatment has been steadfast. Can you tell us a little bit about your background and perhaps some of your early influences and experiences that led you to ASAT?
A: I am not a professional in the field of autism, and, in fact, I have no children. I am 61 years old and the only child of two terrific parents. I was born in Brooklyn and raised in Brooklyn and Queens. I am married to a wonderful lady, Lydia. Getting married at the age of 57 and getting a puppy at age 59 – two firsts - is proof that you can, in fact, teach an old dog new tricks. Autoimmune diseases have plagued me since I was a baby. I believe that the effort required to cope with chronic ailments has helped guide my life and shape my values. I recall quite vividly the enormous emotional strain on my parents when they saw me suffer and yet could do little to relieve my physical and emotional pain. Yet they never complained. Seeking effective treatment and sifting through the information about my autoimmune condition had always been in the forefront for my parents. Although autoimmune disease and autism are indeed different, and times have changed, the many parallels set the stage for me to get involved in an organization such as ASAT with its mission and focus championing scientifically-proven research and recommendations. My grandparents were immigrants, and my parents had their education cut short by the depression. I was the first college graduate in my family. I hold a B.A. in political science and economics from Queens College, and an MBA from Fordham University. In college, I pledged Alpha Phi Omega, a national service fraternity (I was always a bit dull!).
My business experience is in the financial services industry, mostly with Merrill Lynch. I left Merrill in 1995 on disability. Since leaving, I have taught numerous courses and summer seminars to graduate business students, and I also conduct arbitrations for the Financial Industry Regulatory Authority. Since 1995, I have worked with several non-profit organizations.
Q: Is there any theme that underlies your work with these various non-profits?
A: As a function of my own experiences, I have come to appreciate how critically important education is for a better life for all young people. I believe that a formula for a successful life includes a broad, high-quality education as well as individual responsibility, family involvement and community support. My work has been with various non-profit organizations whose tenets reflect these values and commitments. I connected with organizations that were involved in supplemental education, such as All Stars in New York City. More than a decade ago, a number of leading All Stars supporters and I talked about launching a school that would introduce inner-city young people to the broader corporate and cultural world. After working 22 years at Merrill Lynch, I knew how critical it was for young people leaving high school or college to know how the world works, and that many people from our inner cities were not being properly prepared by the school system to pursue their career or educational goals. Each year, 200 students between the ages of 16 and 21, from over 40 New York City and Newark high schools, are accepted into the Development School for Youth (DSY) on the basis of their desire to be leaders. The program was designed to provide these youth with practical skills to prepare them for the workforce: skills such as resume preparation, mock interviews, public speaking, how to dress and groom, how to use a PC, etc. We then placed the kids in summer jobs where they obtained practical, on-the-job experience. Currently, I chair the Finance and Audit Committee of the All Stars board, serve on other board committees, and work one-on-one mentoring young people.
Q: That is an incredible program and I know you are being very modest. Is it indeed the case that a school is named after you?
A: Yes, the Development School for Youth is named after me. Friends and colleagues personally donated to fund the program. Unbeknownst to me, the All Stars approached Merrill Lynch executives who coordinated the fundraising with other friends and colleagues.
Q: That is such an incredible story. Being a native New Yorker myself, I am well aware of how important it is for inner city youth to make connections with caring adults, to identify their personal strengths and passions, and to be given the resources to pursue their dreams.
Let's turn our attention to ASAT. How did you first learn about us? What led you to get involved?
A: I was introduced to ASAT by a friend and colleague whose wife was a co-founder of the organization. They told me about their two children and their quest to seek effective treatment for autism. I initially donated to ASAT and was subsequently asked if I would join the board. I connected with ASAT because I could relate my rare autoimmune disease and my family's sacrifice with the pain of the children who suffer from autism and the pain felt by their parents.
I was fortunate to have devoted, loving parents who were tireless in their quest to seek a cure, or at least pain relief, for my suffering. An organization like ASAT, with so many wonderful, caring people, and its goals of educating parents and battling harmful, unscientific research, would have been most beneficial to my parents, who had limited resources and education. There was no ASAT-like organization for my parents when I was younger, but for the thousands and thousands of parents learning of a child‘s autism diagnosis, I can appreciate the important role that ASAT can play in guiding them to the best possible treatment decisions for their child. Again, this ties back to my desire to help children and adolescents access meaningful, high quality educational experiences.
Q: I see the parallels that run through your volunteer experiences, as well as your own personal experience with a chronic illness. Why do you remain involved with ASAT after all these years?
A: Quite simply, there is more work to be done! Although progress has been achieved, partly due to the efforts of organizations like ASAT, many of the old issues continue to exist. Individuals and their families are overwhelmed by the plethora of treatment options; there is a lack of a shared commitment to science; many doctors need education and accurate information; and the media continues to sensationalize pseudo-scientific treatments. ASAT needs to continue to bring valuable insights to parents and afford them guidance and tools to make the best possible treatment decisions for their children. Furthermore, solid scientific research needs to be disseminated and acknowledged. I am glad to be a part of this.
Q: Non-profit organizations such as ASAT benefit tremendously from the participation of members of the community, like you, with strong business credentials and experiences. As you know, our country is facing some tough economic conditions. Do you have any insights on how non-profit organizations can remain viable during these times?
A: I tend to work with non-profit organizations that utilize, or desire to utilize, a business model while not relying on a bureaucratic and unreliable government. A strong board of directors which blends content experts and business people is essential for success. Ideally, at least half the board should be active in raising funds. A board has several critical initiatives, but in order to remain viable, none are more important than fundraising.
In difficult economic times, like today, the non-profits that perform well already have a long track record with a broad, but not necessarily wealthy, base. They also target donors with an array of interests in the population served.
Considering all that still needs to be accomplished, especially in this very difficult economic environment, ASAT, and many worthy organizations like it, need support now more than ever. Whatever an individual can contribute will be greatly valued and appreciated by the children and their families.
Thank you, Joe. I appreciate this opportunity to learn more about your experiences and background. On behalf of ASAT, we are grateful for your service, appreciative of your business smarts, and inspired by your story!
Meet our Board Members: Interview with Barbara Wells
Conducted by David Celiberti, PhD, BCBA-D
President, Association for Science in Autism Treatment
The autism community knows very well that significant outcomes are achieved when parents and professionals work in partnership. ASAT is no exception. In fact, parents played a significant role in the creation of ASAT over 10 years ago. Currently, ASAT has five wonderful parents on our board and I recently had the opportunity to interview one of them. Barbara Wells has served on the ASAT Board for four years.
Q: Barbara, I am delighted to have this opportunity to interview you. Before we talk specifically about ASAT, can you tell us a little about your family?
A: I am a single mom with three kids ages 29, 24 and 18. My oldest is a marine who just returned from Afghanistan. My daughter graduated in May from Temple University with her BS in Social Work. She is currently a social worker for Princeton Hospital. My youngest, who has autism, recently turned 18 and attends a public school. I am in the process of applying for guardianship for him.
Q: We thank you and your son for his service to our country. I understand that you recently participated in a marathon that tied in at least two aspects of your family life. What led you to take this on?
A: I try to stay as healthy as possible which helps me deal with the daily stress of being a single parent with a child diagnosed with autism. I started running because it was an exercise that I could fit in when I had the time and there was very little expense. Linda Meyer, Executive Director of Autism New Jersey, has been my mentor and she ran her first marathon when she was 50. She challenged me to run in the Marine Corps Marathon. As I was training, I kept thinking about my oldest son and the courage it took for him to enlist in the Marine Corps and to serve our country in Afghanistan, and the courage it takes for my son with autism to deal with life every day. I completed the Marine Corps Marathon in 5 hours and 29 minutes. I will turn 50 this June.
Q: That is wonderful. Your family must have been very proud of you! Your youngest son was diagnosed in the mid 90s. Can you tell us a little about your early experiences navigating the many many treatments for autism?
A: Back in the Stone Age when computers were not so commonplace, information on treatments for autism was sparse and not widely available. Most of the information I received was through other parents. I did not realize the breadth of the spectrum of autism. I thought most kids were alike and therefore what worked for one child would work for all children. My early experiences involved watching what other parents did and choosing treatments I could emulate. The New Jersey Center for Outreach and Services for the Autism Community (COSAC), now Autism New Jersey, provided a great parent training that focused on applied behavior analysis. Over the years, I have been able to incorporate what I learned at the parent training into a program for my son.
During this time, we tried the gluten/casein-free diet at home. We did not inform my son’s school that we were pursuing this diet and no change in behavior or ability was noted. It was very expensive, time consuming and stressful on our whole family. The testing was particularly hard on my son. Visits to the DAN practitioner, forcing him to take supplements and not allowing access to preferred foods was a nightmare. I justified the torture because I wanted to find a cure for my son. As is the case with many parents, I wanted to believe that there was a quick fix.
It is also important to note that 10 years ago ABA services were not readily available. Teachers with experience were few and far between. During the course of one year, my son had six different teachers. After a struggle with the school district that ended in mediation, my son was transferred to a private school. His first few months were a struggle, but after an initial adjustment period, he made significant gains in language and ability. Behavioral challenges finally started to decrease. At the age of 15, he returned to a self-contained class in our local public school.
Q: Your experiences are sadly not unique in that the lack of availability of evidence-based practices has certainly increased the attractiveness of other treatments. What do you think is different now for parents of newly-diagnosed children? What is easier and what is harder?
A: Information regarding autism treatment is much easier to find. Treatment summaries, found on ASAT’s website, provide parents and professionals with the most current information. Book reviews, article synopses, links to relevant sites and answers to frequently asked questions provide information that would have taken hours to research on my own. Colleges are offering course work that supports the field of autism which, in turn, has expanded the pool of professionals available to work with our children. Medical professionals are more proficient at diagnosing autism allowing children access to services at an earlier age. In many regards, there has been much improvement.
What I find harder is that many parents continue to struggle with school districts that drag their feet in providing appropriate services. As a parent of a young adult, I also find it hard to find services such as respite, employment and housing for adults with autism. Increased funding streams for research into the causes of autism have produced tremendous advances, but it is harder to find funding for programs for individuals currently in need of support. Finally, it is important to note that with abundance of information on the internet, is an abundance of bad information that can be incredibly distracting, particularly for parents of newly diagnosed children. I appreciate the role ASAT plays in helping parents with their ever so important decision making.
Q: Why have you remained so involved with ASAT?
A: Those famous words, “If only I knew then what I know now bear tremendous relevance to me. I want to help parents use science to help make decisions regarding treatment, not emotions, and ASAT is a wonderful forum through which I can do just that. When my son was younger, I had an overwhelming need to do something…I could not just stand by and watch the slow progression of skills that ABA produced. I realize now that clever marketing had a more powerful impact on the treatment decisions I made than common sense. I wasted a lot of time, money and energy on treatments that had no scientific basis.
Q:What are the various hats you have worn as a board member?
A: Over the years, I have served on almost all of ASAT’s committees such as Public Relations, Finance, and Website. More specifically, I have been involved in updating the Conference page, helping to redesign the website, monitoring the ASAT mailbox and coordinating and processing donations. I look forward to assuming the role of ASAT Treasurer later this year.
Q: What advice do you give parents of newly diagnosed children?
A: Take a very close look and then a second look at the treatments you are considering. When deciding on a treatment, take the time to research claims regarding outcomes. Are the claims based on data that support a change in behavior or ability? Is the claim based on belief that the treatment will produce a change? I can now read statements such as “based on a survey by users”, “thousands of people have stated” or “we asked hundreds of users” and question claims that are biased to sell products. Learn how to take data and make decisions based on what is working for your child.
That is all excellent advice. Thank you for taking the time to share your experiences. More importantly, thank you for all you do to help make ASAT a success!
Meet our Board Members: Interview with Mary Beth Walsh, PhD
Conducted by Josh Pritchard. M.S., BCBA
Q: What got you involved with ASAT?
A: I joined the ASAT Board of Directors in the fall of 2006, recruited to the cause by a behavior analyst who had worked with my younger son who has autism. However, I knew of the organization for years before hand, and used to receive and enjoy the old newsletter. As a long time parent-advocate of effective intervention, I’ve directed many parents to the ASAT website, in particular our Research Summaries on Autism Treatments, and was glad to be able to volunteer with the Website Committee.
Q: What line of work did/do you do and how does it relate to the ASAT Mission?
A: I teach in a graduate program in Roman Catholic pastoral ministry, and hold a doctorate in theology and ethics. This may seem to some to have little to do with ASAT’s mission; however, to my mind, the right of individuals to effective intervention and treatment, and the rights of parents to accurate information based on science are both deeply ethical issues. In addition to being an advocate of science-based intervention for individuals with autism, I also advocate for the inclusion of individuals with autism in communities of faith, and have co-edited a resource booklet, Autism and Faith: A Journey into Community available here.
Q: What experience do you have with autism treatment? How do you think ASAT can help with that?
A: When my son was diagnosed, I was very lucky to make contact with a gifted and kind behavior analyst (Dr. Sharon Reeve, BCBA-D, of ASAT’s Advisory Board) who helped me educate myself about autism treatment and science, and who, more importantly, helped my son tremendously and set our whole family on the right path. But over the last eight years I’ve come to realize my family’s story is extremely unusual. Where we live in New Jersey, we are lucky to have a lot of supports, from a respected advocacy organization committed to science, Autism NJ www.autismnj.org to some excellent evidence-based schools for children with autism, and including great graduate programs that train teachers in science based intervention for autism. This abundance of resources is not the norm. It’s my personal belief that those of us who have been able to access excellent services for our children have an obligation to help other parents.
As Chair of the ASAT Website Committee, I am privileged to be able to read and respond to the emails that come into the info@asatonline.org account from parents around the globe, and I know that most families have a much harder time finding evidence based treatment for autism, or even getting to see what this looks like in real life. At ASAT we receive emails from parents in Oman, Bangladesh, and Brazil, and I am always struck by the tremendous lengths parents are willing to go to in pursuit of effective intervention. Too often the scarcity of science-based intervention for children with autism fuels parental desperation for “anything that works” and allows for the proliferation of quack-based interventions and opportunists willing to prey on vulnerable families, especially during the early, confusing,anxiety-filled years immediately post-diagnosis. Reading the emails we receive at ASAT always recommits me to our mission to provide accurate information about the science behind proposed autism treatments, and to work to increase access to effective, evidence-based interventions for all individuals with ASDs.
