Taking on autism

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Mon, Apr. 17, 2006

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*Taking on autism*

*Despite warnings that there is no cure, a couple are banking on a blend

of mainstream and alternative therapies for their twin sons.

**By Josh Goldstein*

*Inquirer Staff Writer

http://www.philly.com/mld/inquirer/news/magazine/daily/14360630.htm

*

Bradley and Connor Elliott with dad at a playground near their

home..

[foto] BOB WILLIAMS / Inquirer

Bradley and Connor Elliott with dad at a playground near their

home..

Marie Elliott knew something was wrong when her 20-month-old twins

stopped talking.

They were soon diagnosed with forms of autism. And doctors said the boys

would suffer lifelong disabilities.

" Like a lot of parents, we said that is not good enough, " said the boys'

father, Elliott, a trauma surgeon in Delaware County.

So he and his wife used their expertise and much of their savings to

create an intensive home treatment program that straddles mainstream and

alternative medicine.

The twins spend dozens of hours each week with traditional therapists to

develop attention and language skills. And twice a week they sit in a

special sauna trying to eliminate heavy metals and other toxins from

their systems - a controversial therapy that some believe may help.

Three years later, the hybrid regimen seems to be working.

Recent follow-up examinations of the twins, who turn 5 tomorrow, found

Connor " appears to be functioning normally, " according to a medical

evaluation. Bradley improved but at a slower pace, and is about a year

behind his brother.

The Elliotts' treatment program puts them in both camps of a debate

raging between the medical establishment and advocates of alternative

therapies. Mainstream doctors often warn against unproven treatments,

citing their danger, while some parents chafe at the lack of knowledge

and look for options.

About one in 166 children are diagnosed with autism spectrum disorders.

The rate is 10 times higher than in the late 1980s, according to an

analysis of autism rates in a major metropolitan area by the U.S.

Centers for Disease Control and Prevention.

The increase stems from better diagnosis, more awareness and an

unexplained rise in cases, experts say.

Autism spectrum disorders are complex developmental conditions that

encompass a range of behavior, including poor social and communication

skills. Two related, milder conditions are Asperger's syndrome and

pervasive development disorder not otherwise specified.

Bradley was diagnosed with autism while Connor was found to have the

less severe developmental disorder.

Autism and related conditions are believed to be genetic, but it is

unclear if an environmental trigger contributes to the disease in some

people, said Maureen A. Fee, head of developmental pediatrics at St.

's Hospital for Children in Philadelphia.

" We are just not far along enough in the science to understand the cause

in every case, " she said.

That lack of answers leads many parents to consider unproven treatments

and doctors to caution against them.

" I certainly understand the emotional aspects of parents wanting to make

sure their child is getting every treatment available, " said E.

Levy, director of the Regional Autism Center at Children's Hospital of

Philadelphia. " Unfortunately, most of the . . . alternative therapies

have not been subjected to rigorous scientific study and some may be

harmful. "

One of the most troubling alternative therapies to the medical

establishment is chelation, a process often involving a compound given

intravenously to help remove heavy metals from the body.

In August, a 5-year-old autistic boy in Portersville, Pa., died while

undergoing chelation therapy at a doctor's office. The death was the

result of heart failure from a lack of calcium in his blood - a known

danger of the care - the CDC reported.

" Many of us draw the line at chelation, " Fee said. " If an alternative

therapy is not going to be harmful, there is no downside, but we have

always been concerned about chelation doing some harm. "

The mainstream medical approach focuses on developmental and educational

therapies.

" Parents should be cautioned about the possibility of misinformation,

especially from Internet sources " that allege association with

measles-mumps-rubella vaccine and miracle cures, cautions the American

Academy of Pediatrics.

Many parents link autism with the vaccines. The timing of the shots and

children's developmental problems lead many to blame mercury or other

factors in the shots.

" I think it is complicated, " Marie Elliott said of the vaccines, " but I

think they had a role. "

Lab tests showed that her twins had high levels of heavy metals and

other toxins. So the Elliotts used a variety of measures, including

chelation, to remove them.

Elliott cautions parents to choose carefully the health

professional and chelating agent. The Elliotts, for example, use a

different chemical agent - glutathione - from the edetate disodium

(Na2EDTA) involved in the Portersville boy's death.

The Elliotts say they have spent more than $150,000 on their program

over three years, an amount beyond the reach of many parents.

In their basement, the parents have set up two classroom areas for the

boys. They've hired and trained their own team of six therapists to

supplement county-funded therapy.

Altogether, each boy receives about 35 hours a week of educational and

developmental work including speech, physical, occupation and play therapy.

The parents have created a physical therapy room with trampoline,

workout mats and a swing. The room also houses the sauna that uses

infrared light, not high heat, that helps detoxify the twins.

They dedicate a shelf in the kitchen to vitamins, amino acids, minerals

and other supplements that Connor and Bradley take each day.

The boys are on gluten-free and casein-free diets to help ease

gastrointestinal problems that often accompany the condition. The diet

eliminates dairy products as well as foods rich in gluten, such as

wheat, rye, beans and cabbage.

Their physician father credits the long hours of traditional therapy for

much of his sons' progress. Still, he thinks their diet, the

supplements, and " the detoxification . . . has had a major effect. "

A doctor who cares for gravely injured trauma patients, Elliott relies

on his medical training to treat gunshot victims and people hurt in car

crashes. So he is frustrated when he hears from autism experts that

there is little to be done for his kids.

Even more infuriating are those parents and doctors who see Connor now

and conclude he must not have had autism.

Elliott has documented every aspect of the twins' treatment and holds

the results of recent tests on the boys at the nationally known Kennedy

Krieger Institute in Baltimore as evidence for his multifaceted approach.

He hopes others can be helped and that parents without his financial

resources will be able to tap the array of treatments his boys have

received.

Elliott also credits his wife for spearheading the twin's regimen and

maintaining some normalcy in the house for their older sons, ,

10, and , 8.

" She has given her life for these kids, " Elliott said at the family's

home in Media, Delaware County. " I get to go away and help people. It is

easy. Autism is hard, there is no road map. "

But there is progress, at least for the Elliott twins.

Elliott talked emotionally about looking forward to a vacation

for the first time since his sons were diagnosed.

" Bradley is going to jump into my arms, look me in the eye, and call me

daddy. "

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/Contact staff writer Josh Goldstein at or

jgoldstein@... ./

*Web Resources*

For more information about autism, check out these sites online:

*Autism Society of America*

http://www.autism-society.org

*Autism Treatment Network*

http://www.autismtreatmentnetwork.org.

*Cure Autism Now*

http://www.cureautismnow.org

*The Autism Research Institute*

http://www.autismwebsite.com/ari/index.htm

*

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