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

AWARENESS

From Time Magazine:

* "Vaccines: Are the Shots Safe?

* First Person: Amy Lennard Goehner - My Son

* First Person: Karl Taro Greenfeld - My Brother

* 'The Geek Syndrome'

TREATMENT

* Autism Intervention Making A Difference In Children's Lives

Vaccines: Are the Shots Safe?

[By Alice Park in Time Magazine. All of the follow articles, except for the last are from the April 29, 2002 edition of Time Magazine. See main story, The Secrets of Autism, in the previous post.]

Ask the parents of autistic children whether they believe childhood vaccines can cause autism, and the answer will probably be yes.

They have heard of too many cases of babies who were perfectly normal until they got their measles, mumps and rubella (MMR) shot and then within weeks - if not days - started throwing tantrums, losing language skills and generally tuning out.

Ask doctors the same question, and they are likely to cite the panel of experts convened by the Institute of Medicine last year.

It studied the evidence but found no explanation for how vaccines might possibly cause autism.

Included in the review were studies that showed no significant difference in the incidence of autism disorders before and after MMR immunization became routine in 1988 in the United Kingdom.

"We bent over backward to look for the biological mechanisms that would support a link," says the panel's chairwoman, Dr. Marie McCormick of the Harvard School of Public Health.

But failing to prove that something can happen is not the same as proving it doesn't, and the issue is still a matter of furious debate.

The only scientific evidence against childhood vaccines comes from Dr. Andrew Wakefield, formerly at the Royal Free Hospital in London.

His theory is that autism stems from a severe immune reaction to something in the vaccine.

In February he published a paper showing that immunized children with autism and bowel disorders have higher levels of measles particles in their intestinal tissue than normal children do.

The evidence is not entirely persuasive, however; measles particles in the tissues do not necessarily mean that the virus - or the vaccine - causes autism.

What about all the children whose symptoms appeared shortly after their MMRs? The association may be purely coincidental.

The shots are given at 15 months, which is when behavior and speech patterns in babies usually become sufficiently pronounced for parents to start noticing that something is wrong.

Most of the evidence suggests that autism is primarily a genetic disorder.

It may be that some symptoms appear immediately after birth but are too subtle to be spotted in the first year or so of life.

To get more definitive answers, the National Institutes of Health and the Centers for Disease Control have each launched their own investigations.

Karyn Seroussi of Poughkeepsie, N.Y., for one, supports this research.

"If it's the shots, I want to know," says the autism advocate and parent of an autistic son.

"If it's not, I want to know what the heck it is that's causing autism." On that, both parents and doctors can agree.

* * *

First Person: Amy Lennard Goehner

My Son

I didn't know the world my friends with normal - or, as we call them, typically developing - kids lived in until recently.

Two and a half years ago, my husband and I adopted our second child, Joey.

And as he has grown to be a toddler, every milestone he has reached has been bittersweet--a celebration but also a painful reminder of all the milestones our 8-year-old son Nate has never reached.

Before Joey could even talk, he would point - as if to say "Hey, Mom, look at that dog over there" - the way kids do to engage you.

I flashed back to the evaluation forms we filled out for Nate when we were taking him to specialists.

One question that appeared on every form was "Does your child point?" It's a major developmental step, a gesture that communicates a child's desire to share something outside himself.

Nate never pointed.

When Nate was not talking by age 2, we took him to a big New York City hospital to get him evaluated.

The neurologist gave us his diagnosis almost apologetically, in a very quiet voice.

I remember just two words: "Maybe autistic." When I stopped crying, I went to my office and called everyone I had ever met who was in any way connected to the world of special-needs kids.

We made a

lot of mistakes before finding the perfect match for Nate (and us): a wonderful speech therapist whom we later dubbed our captain.

When she met Nate, he was nonverbal and running around her office like a self-propelled buzz saw.

She looked at us calmly and said, "Let's get busy.

We've got work to do." We've been working ever since.

In addition to continual speech, behavior and occupational therapies, we have dabbled in what one of our doctors called "the flavor of the week" - vitamins and supplements and other "can't miss" cures.

We also shelled out a small fortune for every must-have tool that Lori, Nate's occupational therapist, mentioned even casually, including weighted vests (to help "ground" Nate) and special CDs (to help desensitize him to loud sounds).

"Every time Lori opens her mouth, it cost me a hundred bucks," my husband once said.

Recently I read Joey a picture book that contained illustrations of fruit.

Joey pretended to pick the fruit off the page and eat it, offering me a bite.

Again I flashed back to those evaluation forms: "Does your child engage in pretend/imaginative play?" Nate's idea of play is to drop sticks and small stones into a drain at the playground.

He could do this for hours if we let him.

Last week Joey took a long noodle from his bowl of soup, dragged it across the table and said, "Look, it's a train.

There's the freight car." Then Nate took a noodle from his soup.

He tossed it onto the ceiling.

Yet maybe because I entered motherhood through the special-needs world, I somehow feel more a part of it than I do the "normal" one.

The challenges in this world are greater, but the accomplishments - those firsts - are that much sweeter.

The other day I heard Joey singing a song about trains, and I realized that I couldn't remember the first time I heard my second son sing.

I just took it for granted.

With Nate, I never take anything for granted.

I remember that when Nate was 6, I was invited to hear his class put on a concert.

I had no idea what to expect, as Nate doesn't sing.

What he does do is make loud repetitive noises, occasionally while rocking back and forth.

But I went anyway.

And when the music teacher approached Nate and began to sing a song Nate loved to listen to, Nate looked down, stared at his hands and very quietly chimed in, "A ram sam sam, a ram sam, gooly, gooly, gooly ...

" The other moms rushed to hand me tissues as tears streamed down my face.

I was listening to Nate sing.

For the first time.

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* * *

First Person: Karl Taro Greenfeld

My Brother

My autistic brother Noah and I once played together.

He was two, and I was a year older.

We wrestled, and I tickled him.

He responded in a high-pitched giggle, halfway between a baby's gurgle and a child's laughter.

I can't remember ever playing with him again.

Noah stayed forever a baby, profoundly retarded, always dependent, never very communicative.

And my role changed, much too early, from playmate to steward.

There was barely any sibling rivalry.

There were no battles to be fought.

He would always be the center of attention.

I was treated as a sort of supporting player.

Because my father had written a trilogy of books about our family with Noah as the title character (starting with "A Child Called Noah," 1972), I would often be asked what it was like having an autistic brother.

I never figured out how to respond.

The answer I always gave - that I had never known any other life or any other brother - seemed cryptic and somehow unsatisfactory.

But that remains the only answer I can give.

Noah, who can't speak, dress or go to the bathroom completely unassisted, will always be the center of our family.

He never earned that role; his needs dictated it.

I wasn't consciously resentful of this as a child.

There was no more reason to be angry about this than there was about the rigid laws of basic arithmetic.

I accepted the fact that Noah and his problems could fill a battleship of parental duty and obligation, leaving my mother and father too spent to worry about the more banal problems of their normal son.

But at some point in my early teens, in the confusing years of adolescence, I stopped having friends over.

Noah's condition dictated what we ate and when we slept and to a great degree how we lived.

We never had fancy furniture because he chewed on the couch cushions and spit on the carpets.

He would pull apart anything more complicated than a pencil.

I was ashamed of our home and family.

Already marked as different by virtue of being Asian American in a predominantly white community, I came to see Noah as an additional stigmatizing mark.

My father used to say every family has a skeleton in its closet.

Only ours was out in the open.

I don't even remember if I talked about Noah in school.

My friends knew about him, but after the first few questions, there wasn't much to say.

Noah didn't change.

Autism is a condition, I knew from close up, for which there are no miraculous cures.

So he always stayed Noah.

This kid who shared the same black hair and brown eyes as I had but couldn't talk and wanted to be left alone.

So what was there to say about Noah? He was my brother who was never going to grow up.

Noah is 35 now and has been living in institutions since he was 18.

My parents visit him every weekend at the state-run Fairview Developmental Center in Costa Mesa, Calif.

I go whenever I am in town.

(Currently I live in Hong Kong.) We bring Noah his favorite foods: sushi, fresh fruit and Japanese crackers and take him for a walk or a ride.

Sometimes he lashes out at me.

Spitting.

Scratching.

Pulling hair.

But he knows me; I can tell by the wary squint he gives me.

We're brothers, after all.

My parents are now in their 70s.

My father underwent open-heart surgery a few years ago.

Eventually, the responsibility for Noah will fall solely upon me.

I imagine I may have to move my own family back to California to visit him every weekend, so that those caring for him will know that despite Noah's temper tantrums and violent outbursts, he is loved; he is a brother and part of a family.

He is still the center of my life.

My travels, from Los Angeles to New York City to Paris to Tokyo to Hong Kong, will always bring me back to him.

I don't know any other life.

I have no other brother.

* * *

First Person: Temple Grandin

Myself

I was 21/2 years old when I began to show symptoms of autism: not talking, repetitious behavior and tantrums.

Not being able to communicate in words was a great frustration, so l screamed.

Loud, high-pitched noises hurt my ears like a dentist's drill hitting a nerve.

I would shut out the hurtful stimuli by rocking or staring at sand dribbling through my fingers.

As a child, I was like an animal with no instincts to guide me.

I was always observing, trying to work out the best ways to behave, yet I never fit in.

When other students swooned over the Beatles, I called their reaction an ISP--interesting sociological phenomenon.

I wanted to participate but did not know how.

I had a few friends who were interested in the same things, such as skiing and riding horses.

But friendship always revolved around what I did rather than who I was.

Even today personal relationships are something I don't really understand.

I still consider sex to be the biggest, most important "sin of the system," to use my old high school term.

From reading books and talking to people at conventions, I have learned that autistic people who adapt most successfully in personal relationships either choose celibacy or marry someone with similar disabilities.

Early education and speech therapy pulled me out of the autistic world.

Like many autistics, I think in pictures.

My artistic abilities became evident when I was in first and second grade, and they were encouraged.

I had a good eye for color and painted watercolors of the beach.

But words are like a foreign language to me.

I translate them into full-color movies, complete with sound, which run like a videotape in my head.

When I was a child, I believed that everybody thought in pictures.

Not until I went to college did I realize that some people are completely verbal and think only in words.

On one of my earliest jobs, I thought the other engineer was stupid because he could not "see" his mistakes on his drawings.

Now I understand his problem was a lack of visual thinking and not stupidity.

Autistics have trouble learning things that cannot be thought about in pictures.

The easiest words for an autistic child to learn are nouns because they relate directly to pictures.

Spatial words such as over and under had no meaning for me until I had a visual image to fix them in my memory.

Even now, when I hear the word under by itself, I automatically picture myself getting under the cafeteria tables at school during an air-raid drill, a common occurrence on the East Coast in the early 1950s.

Teachers who work with autistic children need to understand associative thought patterns.

But visual thinking is more than just associations.

Concepts can also be formed visually.

When I was little, I had to figure out that small dogs were not cats.

After looking at both large and small dogs, I realized that they all had the same nose.

This was a common visual feature of all the dogs but none of the cats.

I credit my visualization abilities with helping me understand the animals I work with.

One of my early livestock design projects was to create a dip-vat and cattle-handling facility for a feed yard in Arizona.

A dip vat is a long, narrow, 7-ft.-deep swimming pool through which cattle move in single file.

It is filled with pesticide to rid the animals of ticks, lice and other external parasites.

In 1978 dip-vat designs were very poor.

The animals often panicked because they were forced into the vat down a steep, slick decline.

They would refuse to jump into the vat and would sometimes flip over backward and drown.

The first thing I did when I arrived at the feedlot was put myself inside a cow's head and see with its eyes.

Because their eyes are on the sides of their head, cattle have wide-angle vision.

Those cattle must have felt as if they were being forced to jump down an airplane-escape slide into the ocean.

One of my first steps was to convert the ramp from steel to concrete.

If I had a calf's body and hooves, I would be very scared to step on a slippery metal ramp.

The final design had a concrete ramp at a 25o downward angle.

Deep grooves in the concrete provided secure footing.

The ramp appeared to enter the water gradually, but in reality it abruptly dropped away below the water's surface.

The animals could not see the drop-off because the dip chemicals colored the water.

When they stepped out over the water, they quietly fell in because their center of gravity had passed the point of no return.

Owners and managers of feedlots sometimes have a hard time comprehending that if devices such as dip vats and restraint chutes are properly designed, cattle will voluntarily enter them.

Because I think in pictures, I assume cattle do too.

I can imagine the sensations the animals feel.

Today half the cattle in the U.S.

are handled in equipment I have designed.

* * *

The Geek Syndrome

By J. Madeleine Nash

At Michelle Winner's social-skills clinic in San Jose, Calif., business is booming.

Every week dozens of youngsters with Asperger syndrome file in and out of therapy sessions while their anxious mothers run errands or chat quietly in the waiting room.

In one session, a rosy-cheeked 12-year-old struggles to describe the emotional reactions of a cartoon character in a video clip; in another, four little boys (like most forms of autism, Asperger's overwhelmingly affects

boys) grapple with the elusive concept of teamwork while playing a game of 20 Questions.

Unless prompted to do so, they seldom look at one another, directing their eyes to the wall or ceiling or simply staring off into space.

Yet outside the sessions the same children become chatty and animated, displaying an astonishing grasp of the most arcane subjects.

Transformer toys, video games, airplane schedules, star charts, dinosaurs.

It sounds charming, and indeed would be, except that their interest is all consuming.

After about five minutes, children with Asperger's, a.k.a. the "little professor" or "geek" syndrome, tend to sound like CDs on autoplay.

"Did you ask her if she's interested in astrophysics?" a mother gently chides her son, who has launched into an excruciatingly detailed description of what goes on when a star explodes into a supernova.

Although Hans Asperger described the condition in 1944, it wasn't until 1994 that the American Psychiatric Association officially recognized Asperger syndrome as a form of autism with its own diagnostic criteria.

It is this recognition, expanding the definition of autism to include everything from the severely retarded to the mildest cases, that is partly responsible for the recent explosion in autism diagnoses.

There are differences between Asperger's and high-functioning autism.

Among other things, Asperger's appears to be even more strongly genetic than classic autism, says Dr. Fred Volkmar, a child psychiatrist at Yale.

About a third of the fathers or brothers of children with Asperger's show signs of the disorder.

There appear to be maternal roots as well.

The wife of one Silicon Valley software engineer believes that her Asperger's son represents the fourth generation in just such a lineage.

It was the Silicon Valley connection that led Wired magazine to run its geek-syndrome feature last December.

The story was basically a bit of armchair theorizing about a social phenomenon known as assortative mating.

In university towns and R.-and-D/ corridors, it is argued, smart but not particularly well-socialized men today are meeting and marrying women very like themselves, leading to an overload of genes that predispose their children to autism, Asperger's and related disorders.

Is there anything to this idea? Perhaps.

There is no question that many successful people - not just scientists and engineers but writers and lawyers as well - possess a suite of traits that seem to be, for lack of a better word, Aspergery.

The ability to focus intensely and screen out other distractions, for example, is a geeky trait that can be extremely useful to computer programmers.

On the other hand, concentration that is too intense - focusing on cracks in the pavement while a taxi is bearing down on you - is clearly, in Darwinian terms, maladaptive.

But it may be a mistake to dwell exclusively on the genetics of Asperger's; there must be other factors involved.

Experts suspect such variables as prenatal positioning in the womb, trauma exxperienced at birth or random variation in the process of brain development may also play a role.

Even if you could identify the genes involved in Asperger's, it's not clear what you would do about them.

It's not as if they are lethal genetic defects, like the ones that cause Huntington's disease or cystic fibrosis.

"Let's say that a decade from now we know all the genes for autism," suggests Bryna Siegel, a psychologist at the University of California, San Francisco.

"And let's say your unborn child has four of these genes.

We may be able to tell you that 80% of the people with those four genes will be fully autistic but that the other 20% will perform in the gifted mathematical range." Filtering the geeky genes out of high-tech breeding grounds like Silicon Valley, in other words, might remove the very DNA that made these places what they are today.

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* * *

Autism Intervention Making A Difference In Children's Lives

Children with autism are often trapped in a maze of confusion, waiting for the right key to unlock and free them from an invisible prison which holds them captive.

The DeSoto County School District's Program for Autism Early Intervention not only has the right set of keys needed to open the doors of opportunity for children with autism, the district has become a model program in the state, according to Wayne Bartley, parent of an autistic child and coordinator of an upcoming celebrity golf tournament benefiting the school district's program.

Enrollment is up from 30 to more than 70 children, and three of six new interns regularly work with autistic children, whereas a year ago no interns worked exclusively with children with autism. Ground breaking research and an emotional support network between parents and educators is giving parents hope that the disorder, which affects millions of children and adults in America, can be conquered.

"Typically, you have parents who have to fight for kid's rights and here in DeSoto County, you have a school system which cares about these kids and their rights to live and learn just like other students," Bartley said in a round table discussion on autism with educators and teachers.

Once again, Bartley is hoping that the second annual "Give A Kid A Chance To Be A Kid" Celebrity Golf Tournament May 9, benefiting the DeSoto County School's Program for Autism Early Intervention Education, will be a success.

Last year, as chronicled in a special series in the DeSoto Times Today, the golf tournament raised more than $19,000 for autism intervention.

"We invested one-hundred percent of that in people," said Bartley. Interns were given bonuses to reward them for their efforts, he said, in addition to other incentives such as working on a private basis with autistic children and their families as a means of earning extra money.

The $600 per child that the school district receives from the state for children with autism and other special needs doesn't go far when one considers the intensive therapy required when working with autistic children, Bartley said.

Often, the public's perception of the disorder is misguided. The popular, if not inaccurate notion of autism is of an uncommunicative child rocking uncontrollably in a corner-not a child who scores a perfect "36" on the American College Testing exam, as was the case with one autistic DeSoto County student.

Of the 25 to 30 students in the school system diagnosed as autistic, there are another 30 to 35 which are higher-functioning students with Asperger's Syndrome, which is included on the spectral disorder of autism.

"The thing about autism is that it's not one size fits all," Bartley said. "That makes it doubly challenging." Dr. Sheila Williamson is a consultant and clinical psychologist for the intervention program. She is amazed at the success of the program, especially at Southaven Elementary School, where Bartley's son Justin is a student.

"We have people moving in all the time," Williamson said. "When you do something well, people often move into the school system just to get the services." Those services include one-on-one interaction, social skills training, and language skills development.

Bartley and other parents have been concerned that state cutbacks in education might mean less funding for programs like the early intervention program.

However, Wynelle Leonards, special education supervisor for the DeSoto County Schools, said the state's cutbacks in education will not have a great affect on special education services.

"I don't think we are going to feel it (cuts) as much as other school districts," she said, adding that her budget for the program and other special education programs will be submitted May 1.

Still, parents like Bartley say the intervention program is wholly dependent on donations and fund raisers to continue the progress which has been made in autism research and education over the past year.

"I'm convinced that 85 percent of improvements are related to the attitude of people around them," Bartley said. "That's where these interns play such an important part. You just can't find anybody to do this kind of job." (Coming Tuesday: a look at interns involved in the autism early intervention program and the children they help.)

* * *

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