The death this week of an autistic boy receiving a controversial treatment laid bare the emotionally raw world of autistic families, who face a poorly understood condition that robs their children of many childhood qualities and isolates caregivers as surely as sufferers.

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Abubakar Tariq Nadama, a 5-year-old who had been living in Monroeville the last few months, died Tuesday while undergoing intravenous chelation, a treatment designed to remove toxins from the body, in the Portersville office of Dr. Roy Eugene Kerry.

Though the question of whether the Butler County death was linked to the treatment has not been answered, the tragedy has inflamed a community already divided between those who believe autism is a neurological disorder with no cure and those known as "bio-meds," who believe it is a treatable condition related to sensitivity to certain toxins.

The boy's mother, Marwa Nadama, who brought the boy here from England for the treatments, declined to comment yesterday. Kerry remained unavailable for comment as well, and his offices in Portersville and Greenville were quiet.

Cindy Waeltermann: "Emotions run high on both sides."

Cindy Waeltermann, mother of two autistic sons and founder of a Pittsburgh-based national advocacy group, said she heard from a number of people angry at her caution to other parents about trying alternative treatments. She issued the comments to AutismLink members Wednesday and they were printed in yesterday's Pittsburgh Post-Gazette story about the boy's death.

Though Waeltermann was harshly criticized by several people for urging parents to research physicians and therapies before trying them, she said she believes the bio-meds may have the key to treating autism and has adopted some of their therapies for her own sons.

"Emotions run high on both sides," she said yesterday. "I think people who really get into the bio-medical aspect of autism are often ridiculed as zealots, because a lot of their theories haven't been proven. A lot haven't been disproven, though. I've seen a lot of kids doing well on bio-medical treatments."

Waeltermann founded AutismLink after her son Christopher's 2-year-old checkup, where, she says, her doctor told her that he "probably had autism and to come back in six months."

Waeltermann, dealing with a child who didn't speak, avoided eye contact, and engaged in repetitive behaviors, went home and got on the Internet -- "my inner sanctum."

She quickly decided she must have Christopher, now 8, analyzed and his treatment started if indeed he was autistic. But there was a long wait. It was seven months before the diagnosis of autism was confirmed. She ended up hiring a specialist to come to her home and teach her the behavioral therapy regimens typically used for autistic children so she could begin them right away.

The experience left her frustrated with the medical community and feeling isolated. As a "computer geek with an ax to grind," a Web-based support group was a natural for her.

The community she sought to pull together has been a tremendous help to her and many parents, as have other advocacy groups. Like many parents of autistic children, she has found the nature of her children's illness (her second son, Alex, 6, is also autistic, though not nearly as severely as his brother) to be singularly difficult.

Autistic children often seemed locked in their own worlds. Parents are left pouring their energy and love into children who may rarely meet their gaze or respond to their voices. Parents engage in often complex and time-consuming regimens to help their children learn to engage the world, and in the process find themselves cut off from that world.

"A typical day? A child who wants to do nothing but sit on the computer 24/7 and play with computer programs about trains. Who throws a tantrum if you take him off the computer. A lot of tantrums. A lot of repetitious behavior. I love my kids, but it's hard, it's very hard. You see people with typical kids and it's hard. You see the way it could have been. I don't have friends with typical kids anymore. Others don't understand my life. I don't feel comfortable with them anymore."

Having some of the people who do understand attacking her doesn't make her comfortable, either, but she empathizes with parents seeking alternative treatments, something she herself has done.

There have been arguments within the community of families of autistic children over the years, she said, mostly over competing types of conventional therapies that now are often used together. But the growth of chelation and other bio-med therapies has created a deep rift.

"We're desperate. We want to help our kids. We pretty much would go to the ends of the earth for them. There are parents giving their kids treatments that we don't know are safe -- that's pretty desperate.

"I don't think the parents should be blamed for doing what they think is best. I think the medical community should be blamed for not being there to help them. We have several discussion boards online and I'll tell you what, the level of knowledge of some of these parents blows me away. They have researched this because no one has been there to help them."

She uses some of the dietary restrictions recommended by those who advocate a bio-medical approach. She doesn't plan to use intravenous chelation because she's not comfortable with the level of scientific evidence on its efficacy. But she believes, as many parents of autistic children do, that there is a link between mercury and autism. She thinks the bio-meds "are going to have the last laugh in the end. I think these things work."

She remains skeptical of the traditional medical community and resents what she sees as its attitude toward parents seeking alternatives.

"I'm not a wacko alarmist, like doctors make us out to be -- crazy parents looking for someone to blame. We're not. We're looking for answers, and we're not getting them."