Autistic child’s mom shares

Giving birth to a son opened a lifetime of possibilities for Tina Dula. A medical condition that appeared two years later seemed to slam the door shut on those dreams.

After her son Myles retreated into a shell, lost language skills and became self-destructive, a diagnosis of autism confirmed her suspicions, but it rang like a death sentence on her plans for parenting.

Her path was new and definitely unclear: speech therapy, behavioral therapy, medications, supplements, insurance. The confusing clutter of information she faced kept the Roswell mother surfing the Internet into the wee hours of the morning trying to find answers.

Now, Dula tries to provide answers, information and direction to families facing similar challenges through her organization, Myles-a-Part. The 2-year-old foundation will receive proceeds raised from Fashion for a Cure, a gala tonight in Atlanta sponsored by the North Suburban Chapter of Jack & Jill of America.

Dula launched the organization to provide families with financial and emotional support. Every family dealing with autism has a different journey, she said, but all share many of the same struggles.

“We’re always fighting,” Dula said of families often plagued by financial strain. “Sometimes, within the shadow of the debate [about autism’s cause] are people who simply cannot afford to help their children.”

Costly treatments

About 67 percent of recommended therapies for autism patients are not covered by insurance, she said, and out-of-pocket expenses can be a struggle for even the most affluent families. For instance, Applied Behavioral Analysis therapy, a common treatment, can range in cost from $35 to $100 an hour, and most therapists recommend 40 hours a week.

As part of a biomedical regimen, Dula’s son Myles takes about 50 pills a day for conditions including detoxification, hyperactivity and other behavioral issues; none is covered by insurance. The family spends about $280 a month on supplements and prescription medication.

Myles also receives B12 shots to promote speech and help with calmness at about $60 a month, intravenous chelation for detoxification at about $180 a week and sessions in a hyperbaric chamber that oxygenate the brain, promote speech and decrease compulsive behavior at $50-$100 an hour.

“It’s very complicated,” said Dula, who works part-time at a church and estimates her family’s out-of-pocket expenses at $13,000 a year. With the help of a state voucher, Myles attends a therapy-based school that costs $30,000 a year.

Days after Myles was first diagnosed, Dula’s husband Samuel lost his job. The family was forced to make financial sacrifices, including selling much their furniture to help pay Myles’ mounting expenses. Now, even with some insurance coverage and a state waiver that underwrites therapies and activities designed to integrate the child into the community, the family sometimes struggles to afford the comprehensive treatments.

“It’s been a very expensive undertaking but worth it,” Dula said.

Good days, bad days

As the incidents of autism increase, awareness and coverage by insurance companies increase.

Decades ago, one in 10,000 children was diagnosed with autism. Now, the rate is one in 150 children nationally (a new diagnosis every 20 minutes) and one in 130 in Georgia. Those diagnosed are disproportionately male; statistics say one in every 94 boys has autism.

For Dula, every aspect of her life has been turned upside down by autism.

“My life is like B.A. [before autism] and A.A. [after autism],” Dula said. “I can now see how far we’ve come. It’s not paradise, but it’s not the really dark place where it was when we first got the diagnosis.”

She rejoices in the good days when Myles says a new word, does not bang his head all day or sits through an entire meal at a restaurant without an emotional outburst.

Her best day came two years ago when her partially verbal son, whose ability to express thoughts or feelings in a complete sentence was questionable, said the words a mother longs to hear: “Mommy, I love you.”

“I just lost it,” she said. “I fell to my knees and just cried. That was one of the best moments of my life, and I cling to it.”

Fashion for a Cure. 7-11 p.m. today. $125. Atlanta Marriott Marquis. For more information: www.nsacjj.org or e-mail fashion foracure@yahoo.com.

Autism Facts

Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder affecting the normal functioning of the brain. It is characterized by delays/deficits in communication, socialization and behavior. At this time, there is no cure.

> 1 in 150 children (1 in 94 boys) is diagnosed with Autism Spectrum Disorder (ASD), according to 2007 data from the CDC. In Georgia, the rate is higher: 1 in every 130 children

> More children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined.

> Many children with autism employ five or more treatments at any given time. About 67 percent of these treatments are not covered by insurance or Medicaid.

> 80 percent of couples parenting children with autism divorce.

> 46 percent of mothers of children with autism report suffering from depression.

> African-American and Hispanic ASD children are diagnosed, on average, 18 months to two years later than children from other ethnic groups, and tend to receive less aggressive and effective intervention.

Source: Myles-A-Part Foundation

AUTISM RESOURCES

> Myles-a-Part (678-575-0014, www.mylesapart.org). Provides emotional and financial support to families of children with autism.

> Autism Society of America, Georgia Chapter (770-904-4474, www.asaga.com). Provides information on treatment, research, legislation and resources to assist families.

> FOCUS: Families of Children Under Stress (770-234-9111, www.focus-ga.org). Offers comfort, information and programs for the more than 2,500 families in metro Atlanta and surrounding counties.

> Parent to Parent of Georgia (770-451-5484, www.parenttoparentofga.org). Provides support and information to parents of children with disabilities.