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RESEARCH

* Basic Structural Differences Discovered in Brains of Autistic Individuals

EDUCATION

* The Forgotten Children

Basic Structural Differences Discovered in Brains of Autistic Individuals

[Source: Medical College of Georgia.]

Autistic individuals have a fundamental structural difference in the alignment and wiring of their brain cells, a difference that explains these individuals' proclivity to live in their own world, according to researchers.

"The fundamental structure by which they think and process information is different," said Dr. Manuel F. Casanova, neurologist and neuropathologist at the Medical College of Georgia and lead author on research findings published in the February 12, 2002, issue of Neurology. The structural difference they have found would result in too much communication, too little inhibition and a tendency to shut out much of the world around them, the researchers said.

Dr. Casanova's research team members examined the brain tissue of nine autistic people with a mean age of 12 and found to their surprise that not only do they have smaller minicolumns - a basic organizational unit of 80 to 100 brain cells and their connective wiring - they have more of them. The team reproduced its findings using a different method of microscopic analysis before submitting them for publication.

"We believe that we have uncovered a major source of pathology that has been untouched before because no one looked at minicolumns," Dr. Casanova said. "I pray we are correct because this is standing on the verge of something that could be very important to many people."

The team previously published studies indicating that microscopic differences in the minicolumns of man and non-human primates help explain man's capacity for complex communication. They also postulated that differences in the minicolumns might hold clues to conditions such as autism and schizophrenia in which communication is dramatically impacted.

"Intelligence is not the property of single cells, it's in the circuitry," Dr. Casanova said, referring to the minicolumns where cells take in information, process it and respond.

Despite the general observation that autistic individuals tend to have unusually large brains, the researchers found throughout those brains smaller units of circuitry and many more of them. Everyone has millions of minicolumns yet their presence cannot be detected grossly with even the most sophisticated brain-imaging equipment. A microscope is needed to detect the structures that are about forty-millionth of a meter in diameter (a meter is 39.37 inches).

In autistic individuals, often defined as non-communicative and self-centered, these microscopic structures are even tinier and more numerous so the individuals are literally bombarded with communication and stimulation from the environment. "Even the flickering of a fluorescent light can interfere with an autistic person's concentration," Dr. Casanova said.

Computer modeling of their tiny minicolumns indicates excess signaling between cells along with too little inhibition, he said, noting that about one third of the people with autism also develop seizures, another condition in which signaling and inhibition are out of balance. In fact, case reports have shown that anti-seizure medications - which limit the flood of signals reaching the brain - have reduced the autistic symptoms of those who also have epilepsy. Dr. Casanova theorizes that if inhibitory medications, such as anti-seizure medications, were given early enough to an autistic child, in the first few years of life while their brains are being hard-wired, they could help normalize the flow of stimulation reaching the minicolumns. The Augusta researchers already have begun studying the minicolumns of people with epilepsy to determine their pathology as well.

This peculiar pathology linked to autism begins during early development when germinal cells, which have great potential for developing into different types of cells, start dividing to form the brain's major component, the cortex. "In the cortex, the germinal cells continue to migrate. This provides for progressive layering of cells into minicolumns, almost like rainbow Jell-O," Dr. Casanova said. "So autism results from a defect during creation of the cortex."

But, based on his group's research, Dr. Casanova suggests that these microscopic differences in cell organization may not be a defect at all but a step in brain evolution that enables people to truly focus on complex issues facing today's society, such as technology and science. "Evolution is usually depicted as a ladder where one rung follows the next," he said. "It is really more of a bush with sideway branches or improvisations. Variation in the size and number of minicolumns may represent one such improvisation." Today, less than 1 percent of the population is autistic but the numbers have steadily increased since the 1940s when the first figures began being gathered.

Co-authors on the Neurology article include Dr. Daniel P. Buxhoeveden, research associate, MCG; Andrew E. Switala, computer programmer and mathematician, and Dr. Emil Roy, computer applications expert at the Augusta Department of Veterans Affairs Medical Center.

Brain tissue used in the study came from the Autism Research Foundation in Boston and funding was provided by grants from the Theodore and Vada Stanley Foundation and the VA Merit Review Board. "We are grateful to the Autism Research Foundation and to the families who donated brain tissue for study," Dr. Casanova said. "Without the generosity of both, this type of research would not be possible."

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* * *

The Forgotten Children

These are some of the autistic kids denied special care because Ontario refuses to pay

[By Patricia Orwen in the Star.com.]

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Peering cautiously inside his mouth, she felt her stomach turn in shock. Two bloody stumps were all that was left of her 3-year-old's once-perfect front teeth. Little Tony had ground them nearly to the bone, leaving the nerve roots dangerously exposed.

Another child would have been in agony, but her son sat quietly sucking his shirtsleeve.

"I was horrified," recalls Cindy Faria, of Oakville, who rushed the boy to the dentist. "We couldn't believe he wasn't crying ... how could he not feel it?"

The boy needed an emergency root canal. The operating rooms were full but the dentist, believing Tony's insensitivity to pain would allow the procedure to be performed without anaesthetic, went ahead. Tony didn't flinch.

Cindy Faria had already suspected there was something wrong with her firstborn, but this incident left no doubt in her mind. And a specialist soon delivered a gut-wrenching diagnosis — Tony was autistic.

The Farias were devastated. Autism is a severe neurological developmental disability that typically appears during the first three years of life. It affects boys four times more often than girls. Although autistic children appear perfectly normal, they spend their time engaged in puzzling and disturbing behaviour like teeth grinding, spinning, arm flapping or banging their heads against a wall. A third never learn to speak.

Faria remembers fearing the worst for her son.

Shortly after Tony's diagnosis, she attended a program where autistic adults and children were being taken care of. She saw a woman in her 30s suddenly run out and staff had to drag her to the ground. "I watched her screaming," recalls Faria. "She was incredibly upset because in the struggle she had dropped her doll. I just stood there crying. All I could think of was that this is what could be happening to Tony in just a matter of years."

This glimpse of what might be her son's future prompted Faria to immerse herself in the new medical research on autism. She learned that autistic children in the United States were treated successfully with intensive behavioural therapy, known as applied behaviour analysis (ABA). ABA therapists work one-to-one with a child, intensively reinforcing correct behaviour, language and academic skills. ABA costs an average $60,000 a year and children typically require several years of treatment, but studies show the therapy can work miracles — nearly half of autistic children can be taught to function normally. Most of the other half will show some improvement.

Many U.S. jurisdictions classify this as medical care and pay the cost, but Ontario classifies autism not as a neurological disorder that would be covered under the Ontario Health Insurance Plan, but as a psychological disorder with services falling under the Ministry of Community and Social Services. The Farias discovered that this ministry wouldn't pay for ABA.

"When it came down to it, we knew our son's health mattered more than anything ... we were desperate," says Faria. "We would spend anything we had to, if it meant even a chance he could be helped."

She sold her two sandwich stores. The couple mortgaged their house and cashed in retirement savings. Over the next four and a half years, they spent more than $200,000 on ABA therapy.

Tony progressed in ways they never dreamed possible. Today at age 7, he attends a regular Grade 2 class. He has a best friend. He also plays soccer and baseball and loves Pokémon and the Power Rangers.

"Except for learning more subtle social skills, like how to be cool, he is just like every other kid," his mother says.

"Our family has been lucky in some ways," she adds. "We were in a position to borrow money. But now it's very stressful. We're in extreme financial debt and we still have to pay to keep Tony in therapy. How can anyone say this is fair? To date, we have saved the taxpayers millions of dollars that it would have cost to care for him for the balance of his life. It's not right that the government refuses to pay to give him the care he needs."

In 1999, the Farias and 19 other families of autistic children sued the province for $75 million for failing to provide medically necessary treatment and educational services for their children. Parents in British Columbia had already filed a similar class action suit against their provincial government.

In July, 2000, the Supreme Court of British Columbia ruled that the provincial government had discriminated against autistic children. As well, it ruled that autism is a "medical disability just as cancer is and ... both require treatment." The judge also stated that the government's failure to provide treatment violated children's rights under Canada's Charter of Rights and Freedoms. British Columbia has appealed the decision. Faria and the other parents are still fighting their case in the courts.

"Children are at the mercy of the grown ups in this world to decide whether or not they are worth saving," Faria adds. "I feel that in Ontario my son has been declared disposable."

`I don't spend a cent on myself, not even to go to a movie. We eat macaroni most nights. It's the only way we can afford the cost of therapy'

Norrah Whitney,

mother of an autistic boy

`I feel that in Ontario my son has been declared disposable'

Cindy Faria, mother

of an autistic boy

Ontario has since initiated a $39 million a year autism treatment program for a limited number of children age 2 to 5, but there are 900 children on waiting lists for that treatment. Hundreds of other families can't qualify because their children's symptoms are not deemed serious enough. And hundreds of children are being aged out of the program at 6 even though they still need the therapy. The Farias do not qualify because Tony is 7.

In January, Norrah Whitney, a Toronto single mother of an autistic 6-year-old son, filed a complaint with the Ontario Human Rights Commission arguing that cutting off treatment at age 6 is a violation of human rights.

"If he had cancer, the province wouldn't cut off chemotherapy just because he has reached age 6," says Whitney. "Autism is really no different."

When he was 2 1/2, Whitney's son, Luke, ran into walls, ate his feces, and the only sounds he uttered were guttural noises.

Whitney and her husband separated, largely because of the stress of coping with Luke. Whitney and Luke moved into a tiny basement apartment. Relatives lent Whitney money to start her son in ABA therapy. Finally, last year Luke was accepted into the government-funded program. "He's a different child now," says Whitney, who works part time and last year contributed $25,000 to the $55,000 cost of her son's program.

"I don't spend a cent on myself, not even to go to a movie," Whitney says. "We eat macaroni most nights. It's the only way we can afford the cost of therapy.

"Luke is finally learning to talk, finally beginning to relate to people. But his only hope of continuing to improve is to keep going in this therapy. But I cry every night wondering how I am going to keep the therapy going for Luke, wondering what his fate would be if I have to give up ... this is truly a nightmare."

Ontario's minister of community and social services, John Baird, says autistic children who reach 6 are served in the education system, but parents like Whitney and Faria have found this service does not include ABA therapy, the only effective treatment for their children.

"Parents like ourselves are having to do it all on our own," Faria says. "It's devastating enough to have a child who is autistic, but then to have to fight the system every step of the way is complete injustice."

Health experts say the issues raised by the Farias and others are serious, especially given the large numbers of children with autism and the fact that the disorder appears to be on the rise.

In the U.S., the number of children diagnosed as autistic increased 20 per cent from 1999 to 2000, says Marianna Ofner-Agostini, a professor at the University of Toronto's department of health sciences. Preliminary studies in Ontario indicate the number of parents seeking medical help for autistic children nearly doubled between 1996 and 1998, says Ofner-Agostini, who estimates there are more than 3,000 autistic children under 6 in the province. Concerned that autism has become a major health issue, researchers at Queen's University in Kingston are set to begin a national study of the prevalence of autism.

Ofner-Agostini says no one knows whether the numbers are up due to better record-keeping and diagnosis or because there has been an actual increase in the number of children suffering from the problem.

The cause of autism remains mysterious as well. Some experts say routine immunizations in young children might be involved, but there are no studies that have proven any connection. Others suggest that autism is caused by a defective gene and that an environmental trigger such as the vaccine or even a relatively new environmental toxin may activate that gene.

"We are really in the dark," says Ofner-Agostini, herself the parent of a 2-year-old girl, Nadia, who suffers from the disorder.

She and her husband are re-mortgaging their home to pay for Nadia's treatment.

"She bangs her forehead against the wall so often that it's covered in huge bumps and bruises," she says. "We just can't afford to wait until she might get some government help."

Baird describes the Ontario government's program as the best in Canada. "I don't pretend we are going to be able to meet every need, but three years ago, we had nothing and we've gone from nothing to $20 to $40 million. We acknowledge that there are more families that need help, but we are doing our very best."

He says just 55 eligible children are waiting for treatment.

However, NDP health critic Shelly Martel and Liberal social services critic Michael Gravelle say 900 children between 2 and 5 are on waiting lists for autism treatment. With waiting time for some of those children estimated at one to two years, some will reach 6 and be aged out of the program.

"I've been told my Nadia is number 580 on a waiting list of 600 (in

Toronto) and two years is the wait we can expect," says Ofner-Agostini. "This isn't acceptable ... there wouldn't be that kind of wait if she had any other medical problem. Why does our society allow these children to be left out?"

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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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