Autism Speaks/NAAR merger-An interview with Ann Boeker Gibbons from ASQ

[Guest guest]

http://www.autismspeaks.org/inthenews/ann_gibbons_interview.php

Article Reprint

The Autism Speaks ::NAAR Merger: An Interview with Ann Boeker Gibbons

By Diane Twachtman-Cullen, Ph.D.

The straight scoop on a powerful new organization in the autism community

Ann Boeker Gibbons with her son Philip at the October 2005 Long Island Walk for Autism Research

BIO

Ann Boeker Gibbons, a former attorney and investment banker, is an information technology consultant in Chevy Chase, land. In 1998, she founded the land Autism Project to open a school-based intensive behavioral program for children with autism. She is a founding board member and past president of Families for Intensive Autism Treatment of land. Ms. Gibbons was appointed to chair the NAAR Board of Trustees in September, 2005.

DT-C: What brought you to the world of autism and specifically to NAAR?

Ms. Gibbons: I came to the world of autism kicking and screaming, as did my son, who was diagnosed with autism. He regressed around his second birthday and like most mothers, most fathers, and most families, my time was really absorbed with trying to figure out what might be an effective course of action to treat my son. I focused on that little starfish for several years. By the time he was established in an excellent

"...people are going to start to see my son first as a young man, and as someone with autism second."

behavioral program, I could take a deep breath and look around. I had been attending lectures or any public meetings that NAAR had provided from its inception in 1994 until 2000. In 2000 a couple of women in Pittsburgh finished the “race for the cureâ€â€”one of those breast cancer runs—and they turned to each other and said: Why aren't we doing this for Jake? [one of the woman’s sons]. Those two girl friends—one who had a child with autism— decided that they were going to have a run or a walk for NAAR, and that was the genesis of our walk F.A.R. for NAAR program. I was very impressed—very impressed— but still I did nothing. And then we got the NAAR newsletter. Someone had said to me would you like to replicate this in D.C. I told the lady from NAAR that I couldn't really deal with it at the time. Then, as I said, we got the newsletter. My other best friend who does not have a child with autism looked at it and said, “They raised $250,000 in the inaugural event in Pittsburgh and you said no?!†She said she'd help me. So we went back to NAAR and we agreed to host a walk in Washington D.C. in 2001. In our first walk we raised $620,000. So, we knew we were doing something right! That’s how I became involved with NAAR— as a fundraiser. Then I made it onto the board, and worked on the board for three years or so, and then assumed the position of Chairman of the Board of Trustees this past September.

DT-C: That’s really interesting. I was not aware of that. I know that Walk F.A.R. for NAAR has been the signature fundraising event for NAAR, and I'm wondering, with the new merger, is that going to continue?

Ms. Gibbons: We thought long and hard about this affiliation and from the very beginning we were pleased to hear that Autism Speaks was very interested in our walk program and in supporting its growth. It’s not that it would be a sole or a primary source of income for us to work together with our walk program, but even though I'm a “money person†it’s not the bottom line with the walk program that interests me. It’s an opportunity for families to get involved—and I'm not a touchy-feely person—but I was just blown away at the starting line of our first walk in 2001. I looked back and there were 5,000 people standing behind me, and I had never had that since my son was diagnosed. I had known that my sister and my mother and my father and my brothers were standing behind me, but I didn't really get a sense that my neighborhood and my city, and our employers were standing behind us, and literally they were. It was an unbelievable feeling. So, if I do nothing in the merged organization but make sure that that continues, I'll have done enough.

DT-C: So, continuing the walks is the plan at the present time.

Ms. Gibbons: Absolutely. There’s no question that the walks, which will henceforth be known as the Walks for Autism Research, will continue. Our next walk in Washington D.C. is scheduled for Sunday, May 7th and I’m going to be there. Parents As Partners, which serves a vital role in connecting researchers with members of the autism community will also continue.

DT-C: I’m sure that most of our readers are well aware that NAAR has made tremendous contributions to the autism community. Can you “put a face†on the extent of that contribution in terms of a dollar amount and the approximate number of research studies that NAAR has funded?

Ms. Gibbons: To date, NAAR has committed nearly $30 million to fund more than 270 autism research projects, fellowships, and collaborative programs worldwide—more than any other non-governmental organization.

DT-C: Wow! That’s really something. Let me shift gears here. The recent announcement of the Autism Speaks— NAAR merger has the autism world buzzing. Can you tell us when this will be official and what the name of the new organization will be?

Ms. Gibbons: The two organizations expect to have all of their approvals in place by January 31st. The two organizations will collectively be known as Autism Speaks. We’re consolidating the two charities over a number of months, so there are some legalistic technicalities about what the actual moment when things actually end is, but we are hoping that all the documents will be signed by January 31st. We’ve already commenced planning our activities together.

DT-C: Will this new organization be a conglomeration of the two, or will it be a whole other organization?

Ms. Gibbons: Well, I guess it depends if you’re asking as a corporate lawyer, a donor, or as a mother of a child with autism. As a corporate lawyer we will be rolling into their organization, legally speaking. As functioning entities we will blend and assimilate into one large functioning agency that will retain our grass roots organization, our lobbying effort, and which will continue our mission, and our mission as you know is limited to biomedical research. Autism Speaks has embraced our mission to accelerate and fund this research.

DT-C: Are you able to share some of the organization’s major goals for the future that may be beyond the newly announced database and the research initiatives?

Ms. Gibbons: I have no doubt that our mission is going to be carried out—the mission that I embraced when I came to NAAR. It’s a narrower mission than I have in caring for my son. I am interested in every aspect of his life as he grows into a happy and satisfied adulthood. But I felt that the dearth of attention and the dearth of fundraising—I mean the glaring error, the glaring hole is biomedical research, and I have no doubt that that is where their focus is going to be—our focus is going to be—because I will be involved in the future organization. But as far as a larger mission, they are and have already, and are continuing to entertain the possibility of joint ventures with other organizations. But their priorities will be and will remain research, treatment, and awareness.

DT-C: You said that you will continue to be involved. Do you know at this point what the nature of your role will be?

Ms. Gibbons: I will become a board member in Autism Speaks, and I will remain as active as I have been with NAAR.

DT-C: What can you tell us about the leadership structure of the merged organization?

Ms. Gibbons: The leadership will draw upon the talents and energies of key people from both organizations.

DT-C: With autism awareness month looming large, are there any plans in the works that you can share with our readers?

Ms. Gibbons: Oh, absolutely. Every April for the last few years NAAR has had a volunteer retreat in Washington, D.C. and we have organized a Capitol Hill grass roots day where we go and visit as many as 60-80 congressmen, senators and their staffs, to bring them our message. We are very pleased that the plans for this April—Capitol Hill day and volunteer retreat are in place. There may be a different name on the front of our folders, but Autism Speaks has embraced our grass roots lobbying effort, and we’re going forward. We’re very excited. We’re making appointments. We take April very seriously!

DT-C: What has the feedback been from the autism community regarding this new merger?

Ms. Gibbons: Very, very positive. Our volunteers are thrilled. They’re families of children with autism. They want to call their own, Suzanne who sat on the couch of “The View†last week and told her story. She’s a lovely woman, and she embraces us literally and figuratively. We want to be a part of that. We want to work together. Those of us out in the trenches have always been dismayed that there is a cacophony of voices in the autism community. It doesn’t make any sense. So, we’re very excited about the additional resources that this group brings to the table. We’re particularly grateful for the attention that we’re getting outside the autism community.

DT-C: Do you get a sense of how the research community feels about this merger, given that NAAR has been a true beacon for them?

Ms. Gibbons: The scientists are very relieved to hear that we’re going to have the same generous but rigorous grant approval process.

DT-C: What does it feel like to you personally to know that you have made such a significant contribution to the autism community—a contribution that is a benefit to your son whether it is direct or indirect?

Ms. Gibbons: It’s very kind of you to say so, but let me set you straight. I’m no hero, and my son at the end of the day still has autism. I’ve done nothing to alleviate that. The lady across the street has a grandchild who was just diagnosed at eighteen months with autism and she came to me and said what the heck are we going to do. All I could tell her were the exact same things that I was told 15 years ago. How heart breaking is that!

DT-C: I hear you and I know exactly what you mean, but research today does so much to inform intervention practices, that I think it’s just a matter of time before it trickles down into the schools. Actually, that’s the mission of ASQ to get the research word out so that it can be applied to children with autism.

Ms. Gibbons: Oh, absolutely. I’m not pessimistic by any means, but we have had access to best practices and so does my neighbor, but it’s just not good enough. And you know, at the end of the day I think I do what I do because my mission was chosen for me. I didn’t choose this mission. And, if I have a little more time and I don’t have to work full time—I think it would be a crime for me to leave that time on the table and not do something.

DT-C: Well, what you do, you do extremely well. Hats off! Last, but not least, is there anything that you would like to communicate to our readers either about the merger or anything at all?

Ms. Gibbons: Boy. That’s a big one. Let me think. I think that with increased awareness and better funding for medical research we’re going to get to a point where I have better advice for my neighbor. Also, I’m seeing a wonderful change in the community, because we move one little step ahead every time someone like Suzanne goes on a show like “The Viewâ€, because people are going to start to see my son first as a young man, and as someone with autism second. I just want my son to be able to be Philip first, and for the rest of the situation to fall into place. I think we’re getting there. I don’t know if that really answered your question.

DT-C: Yes. It answered it quite eloquently. I’d just like to say that you’ve been a major player in bringing the “rest of the situation†closer to falling into place, and I would personally like to extend to you my congratulations on everything that you have done and been to the world of autism, and all that I know you will continue to be in Autism Speaks.

Ms. Gibbons: Oh, that’s very sweet, but I’m going to hark back to London— and London [co-founders of NAAR]—I mean we wouldn’t be having this conversation without them. always closes his lectures with a quote that goes something like this and it applies here, “If I have seen farther, it’s because I have stood on the shoulders of giants.â€

DT-C: Wow! That’s really beautiful. I want to thank you so much for taking the time from your busy schedule to chat with me today. I wish you and Autism Speaks much success.

Ms. Gibbons: Thank you so much, it’s been a pleasure.

Editor’s Note: At the end of this interview I knew that I had been in the company of one of those giants. ASQ extends its congratulations and best wishes to the newly organized Autism Speaks.

This is a reprint of the full article Subscribers get articles like this in each and every issue