SCHAFER AUTISM REPORT CALENDAR OF EVENTS: EVENTS@doitnow.com

(Formerly of the FEAT NEWSLETTER)

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

Hello Friends, Contributors and Supporters of the FEAT Newsletter.

We've Moved.

Myself and others, who create daily the FEAT Newsletter, (mostly me) are moving to a new publication venue that has a new name, as you can see. We'll provide the same news, information and commentary our readers signed up for.

Our national news and advocacy usually takes us beyond the Greater Sacramento borders where FEAT is focused primarily on the advocacy of behavioral programs for autistic pre-schoolers.

By becoming independent from this important, but different priority, I can now better focus on building the much needed national advocacy network I've been working on, in addition to the news and information we provide daily.

Our new publication will continue to support the FEAT families and children of Northern California, along with the needs of autistic children and adults, everywhere.

I have never seen a more dedicated, generous and effective group of volunteers than those with FEAT. Every community should have a parents' advocacy organization like it; Sacramento just got lucky. Special thanks goes to Michael McIntire, FEAT's server guru, for his contributions and good works over the years.

The new publication is the Schafer Autism Report. There is no change in editorial policy.

I'm excited about where we're going -- as I have been every day with each new post that brings critical information and hope to our community.

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My Story

This article appeared in the Winter 2002 print edition FEAT newsletter that primarily is distributed locally (which I do not edit). It's a good story and it gives me the opportunity to tell you about myself and how this unique project came into being; an incidental gesture of friendship to a handful of autism parents in 1997 morphs into a life's calling.

The love that grew Schnidler's list grows this one. And it is no different a love by any parent who would not turn their backs on the wretchings of autism. It's the love behind the choice to face it head on to save one's child, to not go gently into that dark night. Every parent who takes on this cause brings with them their light of hope to the rest of us, for to save one child, is to know we must save them all. This is my little light, and I'm going to let it shine.

Lenny Schafer

Izak's dad

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"Lenny Schafer Keeps The Country Better Informed about Autism" FEAT’S Online Newsletter entering its Sixth Year

[By Denise Minor.]

By all professional standards, it was a year of recognition for FEAT’s daily online newsletter.

“The FEAT newsletter is absolutely fantastic in its breadth and fairness of coverage. You are doing an excellent job,” wrote Sandra Blakeslee, science writer for the New York Times.

The online service is “a fine publication,” wrote Dr. Marilee P. Ogren in a personal note from her office at the New England Journal of Medicine.

In April, Editor Lenny Schafer was chosen as a speaker at the Power of One autism rally and conference in Washington D.C., and later in the year at the Autism Society of America conventions in San Diego, CA. Considering all the kudos Schafer had been getting nationally, I decided it was time for a personal interview with him about his life and about his brainchild: the Sacramento-based FEAT Daily Newsletter with about 20,000 readers internationally.

“Come over anytime,” Schafer said on the phone. “I’m always here.”

How sad, I thought, he spends so much time at the office. I wasn’t, however, surprised. On any given day I might open my mailbox to find anywhere from two to 10 new articles about autism or related subjects. I could only imagine how much time Schafer and his employees must spend reading through everything from the nation’s largest daily newspapers and magazines to journals as obscure as Singapore’s The Straits Times of Asia in order to gather all those articles.

When I pulled up to the small condominium on Old Placerville Road, I looked back at the address I’d written down. Could this be the place? It didn’t look like a business office. When Schafer opened the door, I knew there had been no mistake. He ushered me into his small living room. All the curtains were drawn so my eyes had to adjust to the dim light. More than half the room was taken up by a workstation with a large and a small computer. Books and newspapers piled everywhere.

There was barely space in the other part of the room for the couch, which was outfitted with a slipcover straining at the zipper, and a small television on a stand. Brown shag carpet covered the floor. “Let’s go to the kitchen,” said Schafer. “There’s more light.” We sat down in a plain room at a table covered by a plastic cloth. The walls were bare except for two small pictures - one of Lenny’s son Izak, 14, and another of a man who looked very much like Lenny, but older. On the table was a binder whose cover read in large print, “IZAK’S HOMEWORK.” “So this is it?” I asked.

“This is where the newsletter that has received so much attention is produced?” Schafer nodded. “This is it.” “And your employees?” Schafer laughed until he coughed. “I’m it,” he said when he had recovered. “But I do have parent volunteers who help me collect information from their own living rooms. I sat back and allowed my preconceived notions to adjust to reality, then started asking more about this man who, by all appearances, lived for little more than to care for his son and put out this incredible information service. “I come from Detroit,” said Schafer. “My career there was in newspapers and in activist politics.” In his hometown, Schafer co-published a small community newspaper from 1969 to 1974. The publication was a medium for publicizing issues he considered important such as the anti-war movement, civil rights, and women’s liberation.

In 1979 he moved to San Francisco where he went from working a blue-collar job at a printing company to owning his own computer graphics company with 25 employees. Schafer married, and in 1986 he and his wife adopted a daughter, Tessa, and then Izak in 1988. His wife was primarily in charge of caring for their new son because Schafer typically worked long hours.

By 1989, the competition in the computer graphics field was getting very stiff and the technology was changing every three to four months. Schafer felt he had no choice but to keep up, and he found himself often working 80 hours per week. It was then, as Schafer found himself working feverishly to keep his business afloat, that Izak was diagnosed with autism. The pressure was too much and Schafer felt that his life was crumbling. “My marriage was going down the tubes. My business was going down the tubes. My son was going down the tubes,” said Schafer. "Talk about mid-life crisis.

In the mean time, Izak’s social worker informed the Schafers that they had the right to reverse the adoption because of Izak’s autism. “I was incredulous,” said Schafer. “I asked what would happen to him if we did. She said he would go to an institution.”

Reversing the adoption was not an option for either Schafer or his wife. “I couldn’t figure out how a person could unlove their son. If I could do that, then he would have been adopted for all the wrong reasons. At this point, Schafer felt like he was at a crossroads. “If I totally committed myself to my business I could save it. If I totally committed myself to my marriage, I could save it. And I felt that if I totally committed myself to my son, maybe I could save him,” he said.

“But I couldn’t do all three at once. I had to choose.” So Schafer abandoned his business, separated from his wife and started investigating what could be done for improving the chances for his son to lead a decent life. His research first led him to trying a technique called options, similar to the methods espoused by Stanley Greenspan. He saw positive responses from Izak, and that spurred him to look further. Schafer then learned that Sacramento was a hotbed of activism for autism-related issues, particularly in the area of education. An added bonus for Izak was that his mother had earlier moved to Sacramento and could see him more often if he lived in the same city. Schafer packed his bags and moved west.

“A small band of FEAT parents showed me around. I was immediately impressed by the amount of time and energy they saved me,” he said.

This same group of parents was in the midst of working to launch Applied Behavior Analysis (ABA) services for home programs for autistic children. They were also very active in fighting to get school districts and Alta California Regional Center to fund these programs.

Izak benefited immediately from the groundwork that had been laid by the founding FEAT mothers and fathers. He got a home program and he was in the first class of the newly opened ABC School for children with autism spectrum disorders.

By now, Schafer felt like it was his turn to begin contributing to the community that had done so much to help him. He had continued his investigations into everything concerning autism, and decided he would come up with a way to share the information.

“Before the internet, we used the phone, the library, the mail - all the traditional means of research. It was labor intensive,” said Schafer. “You could spend the entire day on the phone just tracing down the simplest thing.”

Because of his experience in the computer world, he had access to the Internet, which until the mid- 1 990s was something that was used mainly for the military and for universities to communicate with each other.

“The Internet was much more difficult to use then. It was based on an arcane computer language,” said Schafer. “But it was better than mail.”

Schafer used the Internet to check bulletin boards and online databases for information about autism, then photocopied the material and passed it on to a handful of other parents.

At about that time, there were what Schafer terms two “simultaneous explosions” which were the catalyst for his online news service - the leading edge of the autism epidemic and the launching of the World Wide Web.

“Because of the WEB, the Internet took off and it grew exponentially. A lot of people were stumbling around. They didn’t know how to use it,” said Schafer.

So in 1997, Schafer began pulling information off the WEB and sending it to a “cc” list of parents which in six months grew from 50 to 100. But he wasn’t satisfied with the product.

“One problem with taking something off the WEB back then is that you break up the format. You get this jagged piece of stuff that’s hard to read,” said Schafer. “I have a graphics background, and I figured that since I had more than a few readers, I might as well start cleaning it up into a standard format.” “As soon as I did that, I realized I had a newsletter,” he said.

Soon, the newsletter started getting a huge response. “Everyday I’d have 50 to 100 e-mails in my box,” he said. “If I’d go away for two days, I’ d come home and be overwhelmed.”

Exponentially, people started subscribing to this novel electronic news medium. The second year there were 150 names on the list. By the third year, there were 300. Now there are over 10,000 subscribers, but it is estimated that the actual readership on any given day is between 20,000 and 30,000 because of the “pass along” rate, or forwarding of messages. Readers send the articles to their friends, relatives and health care professionals. The newsletter is also directed to other autism email lists, which have hundreds, and in some cases thousands, of subscribers of their own.

“This was all done in the spirit of making photocopies for friends,” said Schafer.

The material he sends out covers issues as divergent as school district politics to new studies on parts of the brain. “It’s part of helping people keep themselves educated,” said Schafer. “If I’m saving people 30 minutes a day in time they would spend investigating, and you multiply that by 10,000 subscribers, then the newsletter is doing a significant service just in time saved.”

There have been no problems with copyright infringement of the material, he said, because there is a “fair usage exemption” when material is used for educational purposes and no one is making money off it.

And no one is making money off it. The newsletter is free and Schafer receives no monetary compensation for the estimated 60 to 70 hours per week he works on the newsletter, many of those hours after he has put Izak to bed. He supports himself and his son mainly with adoption money the state gives to people who adopt children with disabilities.

But Schafer gets a very different type of compensation: personal satisfaction from helping parents and the children who have autism and professional satisfaction from producing an excellent educational news service.

At the end of our interview, Schafer walks me through his dark living room to the front door. We step out into the bright sunlight and I say goodbye to him as he stands on the stoop eating an apple. I ask if I can stop by if I need more information.

“Anytime. I’m always here,” said Schafer. “At least until they find a cure, this is where you’ll always find me.

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PRODUCTION NOTES:

* We will be catching up on the news that gathered over the last few days, shortly. Thank you for your patience (this is easy to ask for, parents with autistic children define patience).

* DIGEST Subscribers. Our subscription system is still being installed. For a short period you will receive our postings daily, rather than weekly until we finish with its installation. I expect this to take no longer than a week. If you prefer, I can suspend your subscription during this time and then restoring it when complete. Let me know: schafer@sprynet.com

* CALENDAR OF EVENTS: The new address is EVENTS@doitnow.com

* READERS POSTS: POSTINGS@doitnow.com

* SUBSCRIPTIONS: SUBS@doitnow.com

* NEWS: POSTNEWS@doitnow.com

* EDITORIAL: EDITOR@doitnow.com

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Lenny Schafer, Editor@doitnow.com • Kay Stammers • Edward Decelie CALENDAR EVENTS@doitnow.com Michelle Guppy • Ron Sleith

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