Local Chapter of Autism Speaks Splits From Autism Speaks

Apparently the good folks of Burlington, VT have wised up to the fact that Autism Speaks sucks the money out of local communities and does not give back.

Local autism group splits off from national nonprofit
October 21, 2007
By LISA D. CONNELL

BURLINGTON – The state chapter of a national autism group has spun off to form a separate nonprofit.

The Burlington-based Autism Support Daily was formed by a group of advocates who split off from the national Autism Speaks last year.

The schism was over money.

Now there will be two autism fundraising walks in Vermont. Autism Support Daily held its event on Sept. 29; Autism Speaks, which had its own walk scheduled for Sept. 30 postponed its fund-raiser because of the timing conflict. It plans to hold a similar event in early summer.

That's because the Burlington group questions how locally raised funds were used by the national organization. Autism Support Daily believes money raised in Vermont should remain in Vermont.

The local organization also questions how much of that money should be devoted to medical research, and how much should be made available to help local families with autistic children cope with living and medical expenses.

The chance that a child, particularly a boy, will develop autism is now about one in 160, records note. NIH officials define autism as a complex brain disorder.

"Autism involves communication and social difficulties, as well as repetitive behavior or narrow interests. Autism is often grouped with similar disorders, all of which may be referred collectively as autism spectrum disorders. The underlying causes of ASD are unclear. Currently there is no cure for the disorders and treatments are limited," an online report states.

New York-based Autism Speaks in its first Vermont walk last year raised about $50,000, according to Erica Jacobson, an event planner and fund raiser for one of the New England Autism Speaks chapters. Jacobson, who earned a bachelor's degree in sociology from Northeastern University, has spent her career working for nonprofit groups.

She is relatively new to the national group's staff. She said she walked alongside Autism Support Daily members last year. One of Jacobson's tasks has been to rebuild staff at the New England regional office. Jacobson said that she is completely supportive of Burlington-based Autism Support Daily.

"As a parent, you want what's best for your child," she said.

For members of Autism Support Daily, that means giving out all of the money raised for an awareness walk in Vermont to local families in need. The group's Web site, www.autismsupportdaily.com, gave its first financial award at the close of December 2006.

The first "wish it could be more" grant totaled $1,350. Three additional grant awards were given out for $10,906, $2,600 and $2574, totaling $16,080.

According to the group's Web site, funds are given "to families of children and young adults with autism to help them offset the huge expenses they incur on a daily basis in order to get necessities, prescriptions, supplements, and many other items that place a huge financial burden on families."

The names of the 10 leaders of Autism Support Daily, including Angela Timpone and an honorary member, comprise the group's executive list. The all-volunteer organization, recently received its 501(C) 3 nonprofit charitable status, said Timpone.

That's a major difference between Autism Speaks and Autism Support Daily, she said. There is no payroll for any of the staff of the Vermont group, Timpone said.

"Think of this as a grassroots effort," said Timpone. "I think we're completely different."

Autism Speaks Inc., which was formed in February 2005, is the largest national autism group. Its focus, according to its Web site, is on medical research. Its total public support revenue for 2006 was $33.3 million. Its mission is to "aggressively fund global biomedical research into the causes prevention, treatments and cure for autism," according to the Web site, autismspeaks.org. Autism Speaks has 26 board members, plus 20 upper management employees at its offices based in Manhattan in addition to employees working in states across the country, according to its 990 form filed with the IRS in 2006.

Seventy-five percent of the money raised during a state walk goes toward funding research, research dollars overseen by the national group, Jacobson said. The other 25 percent goes toward running the organization, she said.

"It's not a competition. We're all here for the same cause," said Jacobson. "We're here for research and we're here for awareness."

Timpone agrees that more research is needed. "Why is this? We're in the midst of an epidemic and more research does need to be done but at the same time we need the organizations to help support the family who is here now with autism."

"We are not in any way saying we don't support Autism Speaks," said Timpone during a telephone interview. "There needs to be an added component to that. There's families in Vermont that really need help."

Jacobson said she received an e-mail from the local group, indicating it would go its own way. If she had known earlier on of the Vermont group's concerns about where the money raised should be directed, she would have made an effort to deal with Timpone's concerns, said Jacobson.

"We are also dedicated to helping families," said Jacobson. Whether a parent or adult supports the goals Autism Support Daily or Autism Speaks, there is commonality among the two groups, she says. "Because at the end of the day, it's just people supporting autism research and awareness, whether they're directly affected or not," said Jacobson.