Women Talk: 10 Questions with Debbie Hilibrand, Autism Advocate

It’s April and that means Autism Awareness Month – a particular reminder to people nationally that autism statistics are now an overwhelming 1 in 88, according to the latest 2012 report from the Centers for Disease Control. Autism wasn’t really in the news ten years ago and not even 20 years ago, when autism warrior mom Debbie Hilibrand started a micro-revolution. A graduate of the University of Chicago with an MBA in Finance and Economics, Debbie went from business school to Wall Street and met her husband on the trading floor. After they married and started a family, Debbie found out that her son, at age 2 ½, had autism.

At the time, her pediatric neurologist said the incidence for autism was 1 in 10,000 and there weren’t any birth to three-year-old early intervention services available for kids. So, she decided she had to carve her own path and sought out people, teachers and therapists, to help work with her child. She moved from New York to Connecticut to seek out services and an appropriate and nurturing education for her child. But, she didn’t stop there.

Debbie combined her educational knowledge and entrepreneurial spirit to give back to the community and help families who were in the same position. She volunteered at various autism organizations and then founded The Hilibrand Foundation to support work related to autism. Debbie Hilibrand says, “The joy is to meet other people and they are out there and that is a great pleasure”, to help, to organize, to spearhead and to create a better world for individuals like her son. On April 25, 2012, the  UJA-Federation of NY will co-present, with the support of the Hilibrands, the fifth annual UJA Hilibrand Autism Symposium focusing on transition and employment issues for individuals with autism.

10 Questions with Debbie Hilibrand

BR: I heard you helped to create the “walk” movement in autism.  Can you tell more about that?

DH: Twenty years ago, no one knew about autism. When my generation was school age, kids with disabilities were sent to separate schools. As we all grew to become parents, so many of us were ignorant about disabled individuals and how to make them a part of the community. When we lived in Westchester, parents would laugh at my son at the public pool. I moved to a town in Connecticut that had a philosophy of supporting individuals with disabilities into the greater community, schools, recreation and every day life. My son flourished in this welcoming environment. But, I knew that the vast majority of parents were plagued by isolation from their community. Burdened by the demands of raising an autistic child, many parents were longing to connect with other parents to create their own community. I thought how could I help erase public ignorance about autism and give back to the autism community? I became involved in medical research with the National Alliance for Autism Research (NAAR). To raise money for medical research and heighten community awareness we created a national walk program. Wanting to lead by example, I undertook a daunting task of trying to rally the Westchester and Fairfield communities to attend a big walk fundraiser. There was a lot of face-to- face interaction with PTAs and other groups that serviced kids with autism. This was before social media had exploded. You just had to pound the pavement telling people your story. As a board member of NAAR, I helped to search out leaders in other communities throughout the country and so… the national autism walk program was born about 10 years ago.

BR: How do you think your career in finance and economics lay the groundwork for your work with autism?

DH: As a high school student, I excelled on the debate team wining the state championship as a junior. I attended the University of Chicago graduating with a BA and MBA and forged a career on Wall Street. After marriage and my son’s diagnosis it was a natural path for me to become an outspoken advocate for a cause that I was so passionate about. I utilized my business skills at NAAR to help create the infrastructure necessary to sustain a campaign to hasten the pace of medical research. I also joined other committees to support issues related to education and the delivery of services.

BR: What kinds of committees did you join?

DH: My deepest passion is for medical research. I am constantly questioning the alarming rate of autism statistics over the past twenty years. With parents from NAAR, I found people who were asking the same questions I was. I started reading early autism scientific proposals and fellowship grants. I helped spearhead the Autism Genome Project, which identifies some of the underlying genetic causes of autism with the hope of leading the path towards pharmaceutical interventions, among other benefits of genetic research. I was also invited to work with Yale’s Child Study Center to help build community awareness and disseminate best practices. I have been actively engaged with Abilis to help create a community of inclusion where individuals with autism are working and creating a gift store of crafts — making the merchandise, selling it, doing inventory and gaining needed job skills for competitive employment. And of course, I am integrally involved with the UJA Federation of NY and their quest to improve the lives of individuals of all ages who have autism.

BR: There are so many autism organizations these days and so many conferences–how do you decide what to explore given that you are not only an autism advocate, but also a parent of two children?

DH: I am constantly reassessing my priorities. As a guiding rule, I ask myself, what is the role that I can play that has meaningful output? Am I a decision maker at this meeting? Do I want to be? Many people who are advocates get stuck creating a project and their whole identity is wrapped up in that project – professionals in the non-profit world call this founders syndrome. When this happens they don’t become involved in other significant projects. I’d rather be thought of as a “philanthropic entrepreneur” and utilize and leverage resources of other organizations to maximize the potential for social change.

BR: Do you think the world is a different place for individuals with autism than it was 20 years ago?

DH: As dynamics have changed there is so much more awareness and because of this, it makes it easier to live day to day. People are more receptive to individuals with differences. It is easier to go to the movies, the museum, a restaurant, a bookstore or just the beach. While I am encouraged by the change in social acceptance, I don’t want to ever loose the sense of urgency about the mission to make lives better for those who live with autism. I am always asking: What can we do to make the change faster?

BR: Can you tell us about the past five years of the UJA Hilibrand Autism Symposium?

DH: Each year we put together a distinguished panel of speakers to highlight important issues faced by the autism community. We have had panelists talk about the alarming rates of autism growth, employment models, special needs trusts and wills and more. The conference is held in NY and over 250 people attend; we also video conference to sites across the country to engage more communities.

BR: What are the highlights of this year’s conference on April 25?

DH: The past two years or so, I’ve become really interested in transition issues. There are now so many services for babies and young children, but once you age out of school at 21, the choices become very few. This year, the event is called Culture and Community: Exploring the Changing Dynamics of Living with Autism, and we are featuring Roy Richard Grinker, the anthropologist who wrote the wonderful book, Unstrange Minds. We are also excited to have The New York Times reporter, Amy Harmon, who will speak about transitional programs for young adults. We have an employment panel and a session on autism and criminal law since we need to start training people working in enforcement on how to work with individuals with autism.

BR: Can anyone attend the conference?

DH: Yes! There is even a webinar component and you can stream it from your computer.  We will also be tweeting all day @UJAfedNY. To participate in the live Twitter conversation during the symposium, please use the hashtag #autismuja. For more information about the conference, please visit our online event program and to register for the event, click here.

BR: How has your role as an activist in the autism community shaped you?

DH: I am personally driven to stay on the cutting edge of all things autism! I scour the internet, attend conferences and network with parents, researchers and service professionals. I am energized knowing that sharing the most innovative programs and varied perspectives of life with autism, helps other families who are also searching to carve a path for their loved ones.

BR: What are you doing now? What do you to for fun?

DH: Like any parent, I try to balance my passions as a “philanthropic entrepreneur” with every day family life and fun. Right now, my son is enjoying double decker bus tours. So far this year, we’ve taken one in Philadelphia and one in Manhattan. This summer, we will venture to Brooklyn!

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