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

AWARENESS

* The Lost

* Teenage Web Guru Overcame Autism

RESEARCH

* Therapeutic Cloning Used in Lab

* A Birthing Success, An Ethical Debate

MEDIA

* About Autism/Pervasive Developmental Disorders: Online Magazine

* Media Alert: Adult Autistics on NPR's This American Life

* Autism Asperger’s Digest Magazine Expands to 52 Pages

* Letters to the Editor

The Lost

Dedicated father enjoyed helping autistic son.

More than 3,000 people are dead or presumed dead in the terrorist attacks on Sept. 11 against the World Trade Center and the Pentagon, and in the downing of United Flight93 in Pennsylvania, authorities say. Here is one story that involves an autistic child.

The happiest day of Troy Nilsen's life, his wife said, was the day his first child, Scott, was born.

"He said to my mother, 'I have a son now; she can have as many girls as she wants,'" recalled Jennifer Nilsen with a laugh.

Scott was diagnosed with autism when he was 2 years old, but his condition did nothing to dampen his father's joy.

"My husband stood behind our child 100 percent," Jennifer said. He would read to Scott and put him to bed every night. He taught Scott, now 5, the alphabet and did cognitive exercises he picked up from his many books on autism.

Since Troy Nilsen, 33, a network manager at the eSpeed division of Cantor Fitzgerald, was lost, it's hard to know how much Scott and the couple's 3- year-old son, Ryan, understand what happened.

"I think Scott knows," his mother said. "He knows Daddy's not here any more."

"It's horrible without him," she said. "We're miserable." But, she said, she's comforted by the thought that the boys still have their father as a guardian angel. "Even though Troy's not here, I believe he's guiding them."

Nilsen, the man his wife had known and loved since they were teenagers growing up in Staten Island, still guides her, too. "I talk to him all the time, tell him how I'm feeling," she said. "I know he hears me."

Since the couple was married in 1997, their life together had gradually fallen into place. The old house they bought on Staten Island is transformed - new walls, new floors, new bathrooms, all installed by Nilsen himself over the years.

Three weeks before the terrorist attacks, the family took their first vacation in five years - a week by the beach on the New Jersey shore. And they had plans - to buy a new minivan, to move to a larger house, to take more vacations.

"I can't bring myself to say that he's dead," his wife said. "I always say 'gone,' not 'dead,' because he's too young, too healthy.

"It's horrible, plain horrible," she said. "We talked about having three children. Now that's gone, too. We were supposed to get old together."

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Teenage Web Guru Overcame Autism

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A young entrepreneur who suffers from a form of autism, has launched a Norfolk web design company that is already attracting clients from as far afield as America.

Joseph Hill, 17, may not have passed his driving test yet but he certainly has a drive for ambition.

For the boss of Triffik.com, of Wreningham, left school before his A-Levels to take on the challenging responsibility of running the company.

The story is all the more remarkable, because Joseph suffers from Asperger's syndrome.

"Asperger's people are focussed and dedicated to a specific task. That helps me enormously in being driven to achieve success for both the business and the clients," he said.

"There are many famous people with Asperger's, one of whom is Bill Gates. Now he hasn't done badly for himself, has he?"

Despite his age and the occasional frustrations of his condition, he knows what he is talking about. The former Notre Dame High student was building complex web sites by the age of 15.

He has already carried out consultancy work for the Office of Government Commerce (OGC), the Norwich-based former Central Computer and Telecommunications Agency.

And he has also had enquiries from Washington asking him about maintaining a web site for a fair trade organisation.

His many other projects have included developing a search engine for an antiques shop.

Joseph has a clear vision of where he wants his company to go.

"I want to be moving away from having to design myself, and instead to be discussing with companies what they wish to achieve from their e-presence."

He added: "I am entirely confident that I have the abilities to succeed, and am spending much of my time preparing for a new product due to be launched in May. This required a tough decision as whether to leave school and have the product out this year, or to wait another 12 months."

*Contact Triffik.com at 1 & 2 The Marshes, Wreningham, Norfolk, NR16 1BL. Call (01508) 489400/488 379 or 07761 765 299.

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* * *

Therapeutic Cloning Used in Lab

AP - For the first time, scientists say they have used the ethically sensitive technology of therapeutic cloning to repair an inherited disease in a lab animal.

While still far from human use, experts say this demonstrates the potential power of the approach to correct many common ills that affect people.

Most of the steps in the work have already been accomplished individually in lab animals. Scientists have used so-called therapeutic cloning to make embryonic stem cells that can develop into many different kinds of tissue, such as muscle or nerves. But until now, they have not been put back into an animal to treat a disease.

The experiments involved repairing an immune system defect in mice. First, they made clones of the animals to harvest embryonic stem cells. Next, they fixed the genetic defect in these stem cells. Finally they put the repaired stem cells into the adult animals, where they partially overturned the immune defect.

"This really is a tremendous confluence of very, very challenging technology, wrapping them all together into a model therapy," said Dr. George Daley. "We are the first to do this all the way."

The experiments were conducted by Daley and Rudolf Jaenisch at the Whitehead Institute for Biomedical Research in Cambridge, Mass. Two reports on the work were to be posted online Friday by the journal Cell.

"Putting it all together in sequence is dramatic," said Dr. Neil Theise, a stem cell biologist at New York University. "The fact they are doing it in a model of a human disease is very canny, and certainly this will have a big impact on the public debate."

Therapeutic cloning starts with cells derived from test-tube embryos that are genetic twins of the recipient. Many, including President Bush and some members of Congress, are opposed to cloning of all forms, including the therapeutic variety.

Some scientists, including Daley, have proposed calling the procedure "nuclear transplantation therapy" to avoid confusion with reproductive cloning, which is intended to produce a whole person.

The latest experiments were conducted on inbred mice that had severe immune deficiency because of a genetic defect that prevented them from manufacturing antibodies in response to infections.

The researchers started with skin cells from the adult mice's tails. Then they removed the nucleus from a mouse egg and replaced it with a nucleus from one of the skin cells.

In a lab dish, the egg grew into a blastocyst, an embryo containing about 100 cells, including embryonic stem cells. Unlike stem cells in adult creatures, which are generally programmed to produce just one kind of tissue, the embryonic stem cells can potentially grow into anything.

Since the embryonic stem cells were genetically identical to the immune deficient mice, they carried the same genetic defect. So the scientist used gene therapy to fix the bad gene and then put the stem cells into the animals.

The goal was to give them stem cells that would make healthy blood cells. The process worked, although not totally. Disease fighting cells known as B cells and T cells ordinarily make up about 40 percent of the animals' blood. After the experiment, they comprised about 3 percent.

"That was still enough to generate antibodies in these mice," Daley said. "We would expect this level of reconstitution would provide significant immune function and have significant benefit."

Daley said he believes the results will improve with more work. Used in humans, the procedure could potentially supply cells that would correct a variety of ills, such as muscular dystrophy and neurologic diseases.

"In theory, it should work for potentially any genetic disease that could be treated by cell therapy," Daley said. "Obviously there is an enormous number of challenges that any particular disease would face."

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A Birthing Success, An Ethical Debate

Genetic screening allowed a woman to avoid passing early Alzheimer's to her baby. But some ask what's next?

Is it ethical to use high-tech genetic selection to ensure that a child is born without an unwanted hereditary trait?

That question is roiling the medical world after yesterday's announcement that a 30-year-old woman used genetic screening to avoid passing on a form of early-onset Alzheimer's disease to her baby daughter.

It marked the first use of such genetic testing to prevent that disease, and it raised questions about when, or if, medical science should intervene in a person's genetic makeup.

"There are some enormous ethical issues - much bigger than with cloning," said Arthur Caplan, a medical ethicist at the University of Pennsylvania.

+ Article continues at:

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About Autism/Pervasive Developmental Disorders

Weekly Online Autism Publication March 10, 2002

In This Issue

· Newsletter Spotlight

The Medicaid HCB Waiver

· Featured Items

Growing Up Is Hard To Do

Viral Theory Research

SSI/SSDI Benefits

Autism Spectrum FAQ

· In Our Forums

Children at home?

Autism restricting the family

* * *

Media Alert: Adult Autistics on NPR's This American Life

Public Radio's program "This American Life," hosted by Ira Glass, will focus this week on an adult autistic's struggles to cope with the world. Ira has a nice way of highlighting the human aspect of many issues, and I am pretty confident that this program will be worth catching. In Asheville, NC, the program will aired Thursday evening at six. Check your local listings for date and time. Thanks to Eddy Ball.

* * *

Autism Asperger’s Digest Magazine Expands to 52 Pages

The Autism Asperger’s Digest, the nation’s only magazine devoted to autism/AS, has grown from 36 to 52 pages, with the release of the March-April 2002 edition. “We’re very excited about this new format,” stated Veronica Palmer, editor of the magazine, “as we can provide even more information for parents and professionals, and move in new, exciting directions with the magazine. For instance, starting with our May issue, we’ re debuting a regular column written by and for adults with autism/AS.”

“Over and over we hear from readers about how useful and meaningful the magazine is to them. We frequently receive comments about the positive approach we take to autism. Mostly parents or professionals write to thank us for some idea or program or technique they read about in an issue that made a change in their child’s life. That’s really why we do what we do. The response from the autism community to each issue of the magazine has been wonderful.”

In publication since November 1999, the magazine includes originally written articles, full-length excerpts from newly released books on autism, and regular features written by noted experts in the field.

Highlights of the March issue include:

Articles:

Can Enzymes jump-start recovery in Autism?

Is this autism’s latest fad, or an effective means of helping our kids?

The Sensory Learning Method

Combing vision, auditory and vestibular work to help individuals with autism

Enhancing Social Skills in the educational years

Teaching social skills is an ever-changing process; skill streaming is a great first step.

Reflections on Asperger’s: A Few Good Things

A 68-year old woman, recently diagnosed with AS, reflects on her life.

A Journey of Discovery

Deeply touching and personal insights about discovering the wonderful mystery of autism.

Books:

From Goals to Data and Back Again: Adding Backbone to Developmental Intervention for Children with Autism

A nuts and bolts book about writing developmentally appropriate and measurable goals for students with autism spectrum disorders.

Inclusive Programming for Middle School Students with Autism/Asperger’ s Syndrome The transition to middle school is often difficult for children with autism. Sheila Wagner provides a road map to navigate successfully through these tumultuous years.

Reaching Out, Joining In

Teaching Social Skills to Young Children with Autism

Concrete, proven methods address four major areas of social behavior: play skills, the language of social skills, understanding another person’s perspective and using these skills in an inclusive classroom.

Regular Columns in every issue

Autism: The Way I See It, by Temple Grandin

Happy People on the Autism Spectrum

Special Education Law, by Reed Martin, J.D.

How Far We Have Come…How Far We Still Have Yet to Go!

Ask the Experts

What to do about Non-compliance

Research Update

The Road Less Traveled: The Autism Autoimmunity Project

Inspiration: Autism, by Jennifer Kummins

Beauty: Inside and Out

Straight Talk About Language & Communication

By Diane Twachtman-Cullen

Misconceptions About Asperger Syndrome

NetNews

What new and great on the web

Into the Light:

Our Journey through Early Intervention, by Jacqueline McCracken-Houck

Follow one parent as she negotiates for services for her child just diagnosed with autism

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* * *

Letters to the Editor

On the Autistic Boy Scout Troop

I realize - "The length of a minute depends upon which side of the bathroom door one happens to be standing" - but I am sad to hear:

It brings to mind reading of Black citizens allowed to join the Military Forces and die for our country. But they had to do it with their 'own kind.'

Chris Collier chriscollier@earthlink.net

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=mmr <-- address ends here.

Dear Ms Jones,

I read your statement regarding the imposition of the MMR vaccine on all children and not offering a choice of individual jabs. You state as your reason your near death experience in life from measles. Your personal experience has blocked your sense of reason. Parents are not objecting to vaccinating their children. They want to minimize the risk to the welfare of their children and asking for a choice of individual jabs.

What is wrong with that in light of the fact, that the MMR vaccine was not thoroughly tested by the vaccine manufacturers before being brought to market and the weakness of the overseeing government agencies to insist on such testing? The first law of prevention protocols is: "do no harm" Parents suspect the triple jab may do harm. If proper testing had be done

all questions of harm would have been put to rest. I do not know your

experience with Autism. I have a lot of personal first hand experience. Many children struck by autism have a life close to "living death". The entire extended family must sacrifice both emotionally and financially to attempt to make that child be the best that is possible. Put aside the strain on the community at large.

I am sure your position on this subject would shift if a child or grandchild of yours was struck autistic after an MMR jab!

Paul Shapiro, USA, thepaulshapiro@yahoo.com

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Won't Vouch for Vouchers

I am writing In response to the commentary by Jonah Goldberg in "Supreme Court Shouldn't Kill School Choice". In is commentary Mr. Goldberg argued for a voucher plan, or "school choice" as he calls it, and dismissed those who protested this violated separation of church and state. First, since this is an e-mail list for people dealing with autism, why didn't he speak to the relevance school vouchers have for young people with autism? I suspect it is because a school voucher plan is squarely not beneficial to children with disabilities, especially more severe disabilities like autism.

Putting aside his argument dismissing the separation of church and state, I am concerned about children being left behind under a voucher plan.

Honestly, how many non public schools accept children with disabilities? How many openly accept children with autism? Even if someone wanted to start a private school for children with disabilities the government funds from vouchers are nowhere near enough to cover the expenses. That's because the voucher plan is not for the benefit of our children, our children with autism. Instead our children would be left behind in public schools whose funding is further depleted. Depleted because some of the easier to teach students are accepted to the private school under a voucher plan.

Remember, it is the private schools that have the choice whether to accept a child or not, not the parents' choice.

Why would some government officials support a voucher plan you might ask? Well, speaking from my experience here in Michigan where a statewide proposal for school vouchers was defeated, it's all about money (and getting political support from some in the religious community). Many of the voucher plans, like the one proposed in Michigan, only give the parents a fraction of the amount actually spent to teach a child. In Michigan the parent would have received about $3,300 per year, where total funding per child was about $6,600 per year.. While the parent would have gotten only $3,300, the public school would lose $6,600 per child leaving. State spending is reduced by $3,300 per child. It's a hell of a way to trim a budget.

I know that the Supreme Court will be considering Cleveland's plan based on constitutional grounds. If the court finds a voucher plan does not violate the U.S. Constitution, I will be first in line to challenge the plan on other grounds. Namely, that schools collecting public funds must abide by civil rights laws prohibiting discrimination based on disability and education laws protecting the rights of children with disabilities.

Michelle Fecteau, Mother of a 12-year-old with autism

Member of Sacred Heart Church in Detroit

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BMJ Editor Sets Record Straight With Hurt Feelings

"Lenny Schafer misunderstands me, which is probably my fault. I was not in my editorial “bemoaning [my] profession’s loss of patient subordination.” Rather, I celebrate it. Similarly, I was not arguing that “in a rational world, the expert’s informed opinions could only prevail over those of the public lemmings.” Instead, I was arguing that “rationality” is only way to view the world and not intrinsically superior to other ways. And I was certainly not suggesting that doctors are more rational than patients and therefore superior. Many patients are smarter than their doctors. Einstein, Darwin, and Newton must all have consulted doctors.

Initially I was hurt that I was so misunderstood, but I think I can see why.

I started my editorial from the intellectual position of, I judge, many but not all BMJ readers—that is, that doctors ultimately do know best. It’s always important to start from the point of view of your audience—or else your words or images are immediately lost. I then pointed out that most (but not all) doctors have already accepted that individual patients have the right to ignore their advice. The rest of the editorial then discussed whether the views of a large part of the population might prevail over the advice of “medical authorities.” My conclusion was not that this was a good or a bad thing but rather that it was probably inevitable.

But I do think it’s a good thing. I’m suspicious of priesthoods—be they theologians, necromancers, doctors, scientists, or spin doctors—deciding what the rest of us should think, believe, and study.

I end with a quote from Philip Roth. “There is truth and then again there is truth. For all the world is full of people who go around believing they’ve got you or your neighbour figured out, there is really no bottom to what is not known. The truth about us is endless. As are the lies.”

Richard Smith Editor, BMJ

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What About After School Age?

I very much wish this newsletter would deal with the autistic person after school. There is so very little for them. I know too well what I am talking about. My daughter is now 26 and there are so very few services or opporitunities for her. No one seems to think of life after school.

Margaret Dyhouse dyhouse@bigfoot.com

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You're Depressing

I find the FEAT newsletter to be very discouraging with one story more sad than the next. I think it would be most advantageous to all subscribers if you would offer any suggestions or "hope" that might help our children.

Gloria Dollinger [mdolling@optonline.net]

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Sliced Bread Status

I am so glad I have subscribed! I find your articles interesting and information that I have not already received.

Just want to say I think you are doing a great job! Good work needs to be rewarded! KEEP GOING STRONG!

Wendy JCWW@aol.com

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

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Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy Catherine Johnson PhD • Ron Sleith • Kay Stammers • Edward Decelie

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