Interview with Joe Forgione
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!