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Posts Tagged ‘Alison Tepper Singer’

This week’s show focused on the new study in Pediatrics indicating autism prevalence rates are now 1 in 91. Autism Science Foundation President Alison Singer discusses the data, describes what the autism community really needs, and answers the question of whether autism is caused by vaccines.

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by Shannon Des Roches Rosa

Autism Science Foundation president Alison Singer is well known in the autism community for her formative role at Autism Speaks and for leaving Autism Speaks to found the Autism Science Foundation.  

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By Alison Singer
President, Autism Science Foundation

This post is in response to Marc Rosen’s examiner.com post “Why Autistic People Don’t Like Autism Speaks”. http://www.examiner.com/x-21742-Long-Island-Autism-Examiner~y2009m9d7-Why-autistic-people-dont-like-Autism-Speaks#comments. I am posting here because of the 1000 character limit at examiner.com.

In  his blog post, Marc Rosen writes, “Another huge reason why autistics hate Autism Speaks is their film ‘Autism Every Day’, in which they film their then-Executive Vice President, Alison Tepper Singer, saying that when her daughter was first diagnosed, she seriously contemplated driving her car, with her autistic daughter inside, off a bridge… By her own admission, apparently, she would have preferred to murder her own child than to have an autistic child.”

The film Autism Every Day was produced several years ago, and I still get questions about what I meant by my comments, particularly the comment about  contemplating driving off the George Washington Bridge rather than put my daughter in a school for kids with autism. Everything I said in the Autism Every Day video was an honest reflection of how I felt at the time. When I went to see the schools that the New York State Department of Health recommended for my daughter Jodie, I was sick to my stomach. It was out love for her that I would never let her be in a place like that. It brought back very difficult memories of when my brother was institutionalized when we were kids. I certainly don’t want to kill my daughter. I love my daughter and am incredibly proud of her and of all the progress she has worked so hard to make. I am part of this community because of my love for her. The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did. If I had the film to do over again, I would certainly try to make that point more clearly than I did. I certainly did not mean to offend anyone or suggest that Jodie’s life (or anyone else’s) was not valued.

After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options. This was at the start of our journey. When Jodie was diagnosed, I didn’t know what to do. I called the New York State Department of Health, said that the neurologist thought she should go to a special education preschool, and asked them to give me some names. Given the lengthy waiting lists at most schools, try to imagine the type of state supported school that has an opening in March. Fortunately, after this terrible day I connected with other parents in my town and found a great special education preschool where Jodie thrived. We had to wait a year for a spot to open, so before she started we did a home ABA program. That therapy also helped her tremendously. I had no idea these options even existed on my fateful “school visit” day. But the truth is that after I visited the state schools that day I pulled my car over to the side of the road and really did think about whether we would all be better off if I just drove the car off the bridge with the two of us in it, and whether that might spare her the suffering that my brother experienced in Willowbrook. Those thoughts were not rational, although those feelings were real. I am not the only mother to ever experience those desperate thoughts. Fortunately, it didn’t last very long and after a few minutes I drove home. Many parents called and emailed me after they saw the film and said they had experienced the same moments of desperation. Please know that those feelings stem from love and desperation. We love our children.

I have spent a lot of time in the last year or so speaking with members of the neurodiversity community and have learned a lot from these conversations. These relationships have been very productive for me, and I have a much better of sense of the issues now. I have changed my behavior and rhetoric in response to some of the very good points people have made, and continue to speak frequently with many of the leaders of the neurodiversity community. There is still one big issue, however, on which we disagree. I do still feel that genetics research is the best chance we have for understanding the mechanism of action of autism and creating targeted therapeutics. This remains as a sticking point in my relationships with many of the leaders of the neurodiversity movement, although I do think that we have tried to be friends and continue to talk about this issue. I also don’t think that a belief in the importance of genetics research detracts from my eagerness to support research into supports and services and expansion of funding for this critical area. I have been extremely vocal on that issue at the IACC meetings.

I also think a lot of these issues stem from the heterogeneity of the autism diagnosis. I truly pray for the day to come when my daughter can blog or self advocate. She still has a long way to go in overcoming significant cognitive challenges. But I look at the type of work that Dr. Mark Baer is doing at MIT and am really hopeful that Jodie and other kids like her will someday be able to benefit from that type of research.

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ASF-Square-LogoBy Debra E. Blum
The Chronicle of Philanthropy
Issue dated August 20, 2009

http://philanthropy.com/premium/articles/v21/i20/20090812.htm

Few nonprofit leaders would consider 2009 an ideal time to start up a charity.

But Alison Tepper Singer isn’t letting the recession deter her. What she believes is an important gap in autism research can’t wait for the economy to rebound, she says.

Ms. Singer created the Autism Science Foundation, in Scarsdale, N.Y., in April, after resigning as a top official of one of the country’s biggest and best-known autism charities. The departure was prompted by a disagreement over a hot-button topic: whether to support research into a possible link between vaccines and the onset of autism.

Ms. Singer sees inquiry into vaccines as a red herring that diverts money from other research. “That question has been asked and answered, and the answer is, No,” she says. “One more dollar in that area is one dollar too many. It’s time to move on and support science that will yield new and useful information.”

Her former employer, Autism Speaks, in New York, believes vaccine research remains a small but important area to investigate. “If there are unanswered questions of science, we will explore them,” says Mark Roithmayr, the group’s president. To date, Autism Speaks has dedicated $131-million to research, with less than 1 percent going to vaccine-related studies, a spokesman for the organization says.

Fund Raising a Challenge

Ms. Singer’s new autism charity joins an alphabet soup of organizations — most of which were formed in the past decade or so — raising money, seeking attention, and tackling the disorder from different angles, based on competing ideas about its cause, treatments, and potential cures. Just two dozen groups existed in 1999, and now there are more than 100.

Charity observers say the newest group faces the tough task of carving out its niche and getting its very specific, though nuanced, message out to a broad audience in an already crowded field. And they say how the organization fares may provide clues about whether donors have the will or the means during a recession to support so many charities. “All of the challenges a new organization faces are made more severe by this economy,” says Bob Harrington, director of the strategic restructuring practice at La Piana Consulting, in Oakland, Calif. “There’s a risk in splitting the potential funding community in too many pieces, especially when money is tight, but, like any new organization, it has to make its compelling case for why people should support it over the others.”

Ms. Singer says she intends to keep the Autism Science Foundation extremely lean, with no paid employees and an office in the basement of her home.

The seeds of the new group were planted shortly after Ms. Singer resigned from Autism Speaks, frustrated that even its relatively small investment in vaccine studies was a waste of money and that it wasn’t doing enough to counter the increasingly vocal people urging parents to skip vaccines out of concern that they cause autism. She says many parents who blame vaccines for autism choose not to have their children immunized against other diseases, such as mumps and measles, and they often turn to alternative and, some would say, risky treatments to try to cure the disorder.

Autism is a complex brain disorder, ranging from mild to severe, that affects behavior and impairs social and communication skills. No one knows exactly what causes it — though many scientists believe it is largely genetic, with perhaps some environmental components — or how to prevent it, cure it, or fully treat it. The incidence of autism has been rising fast in the past couple of decades, with the latest estimates saying that as many as one child in every 150 has the disorder.

News Spread Quickly

Whether donors will embrace yet another autism charity remains to be seen.

Adrian M. Jones, who serves on the board of the more-established Autism Speaks, worries that the creation of new groups will simply splinter the autism field.

“Is the community better with Coke and Pepsi? I don’t think so,” says Mr. Jones, a managing director at Goldman Sachs. “There’s enormous merit in serving the community as one entity, bringing everyone in together, driving hard in a coordinated way toward what we all want: getting our kids educated, getting them health care and home care, and, eventually, an understanding of autism, its causes, and how to treat it.”

The Autism Science Foundation, however, is betting that potential donors will appreciate its role as an alternative.

News of Ms. Singer’s resignation from Autism Speaks spread quickly throughout the busy Web sites, blogs, and online discussion lists for people interested in autism.

So many people contacted her, Ms. Singer says, thanking her for taking a stand and entreating her to start a new charity that she felt inspired to do so.

Ms. Singer worked with Karen London, another longtime autism-research advocate who had experience starting a charity. Fifteen years ago, Ms. London started the National Alliance for Autism Research, which merged with Autism Speaks in 2006.

So far, the Autism Science Foundation has relied heavily on word-of-mouth, e-mail messages, and social-networking sites, like Facebook, to introduce itself to potential supporters. When it announced its formation in the spring, it also kicked off what it calls its First 100 Days campaign, a mostly friends-asking-friends effort.

Ms. Singer says the group already has hundreds of donors and volunteers but that it’s still too early to make public its finances or share plans for future fund-raising efforts. She says donors appreciate that the organization has pledged that every dollar raised will go directly to grants, which the organization expects to start making by the end of the year.

Louise Bach Capps, from Mechanicsville, Va., whose 5-year-old son has autism, started a Facebook group for parents of autistic children interested in the new organization that has attracted more than 430 members. She says she got involved as soon as she heard about the Autism Science Foundation.

“I’m happy to be involved now with like-minded people interested in really hearing the science,” Ms. Capps says.

Ms. Singer is not naïve, about what it will take to turn the group into something bigger.

As a former producer in the broadcasting industry, she knows the importance of communications, she says, and as a key part of the Autism Speaks team that helped to turn the puzzle piece into a recognizable symbol of autism, she understands marketing and developing a recognizable brand name. She says that for now the group needs to lean on its message against vaccine research, but she hopes to be able to move past that over time and attract anyone interested in supporting autism research.

“In a mission statement, you don’t want to say what you are not going to fund,” Ms. Singer says.

http://philanthropy.com/premium/articles/v21/i20/20090812.htm

 


Copyright © 2009 The Chronicle of Philanthropy

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