Life After an Autism Diagnosis

Nov. 4, 2008 — -- Four years ago, when a neurologist diagnosed Judith Ursitti's son, Jack, with autism, she packed his baby blankets in a box and gave them to Goodwill.

"Jack is a different boy than the engaging baby he was," Ursitti explained of her son, now 6 years old. "Throwing away the baby things for me symbolized that our lives were changing."

Such is the turmoil faced by the families of the estimated one out of 150 children across the country diagnosed with autism.

Autism Spectrum Disorder has garnered many names.

Some call it "the unwanted guest" or a "life sentence." Some say it is a genetic disorder; others call it an environmental illness. There is no scientifically proven cause or cure for autism, and although numerous treatments are available, no road map is given to indicate what option is best for each child.

And because many insurance companies do not cover the cost of treatments for autism, many parents forgo them because they cannot afford to pay.

"There isn't one stream that families find themselves in where they get carried along," said Dr. Jon Markey, a child psychiatrist at William Beaumont Hospitals. "Life after diagnosis is normally a haphazard unfolding and everything is learning as you go."

Ursitti recalled feeling uncertain about what the next step should be after hearing her son's diagnosis. She said their doctor had told them that Jack's autism was a lifelong illness. Unwilling to accept this answer, she scoured numerous Web sites for more information.

Ursitti took Jack to another specialist, who recommended applied behavior analysis, a form of treatment aimed to teach a child with autism basic language, social and behavioral skills through structured repetition. The Ursittis pulled up roots from their hometown in Texas and headed to Massachusetts to begin applied behavior analysis for Jack.

"All the dreams we envisioned of staying in Texas, our child being valedictorian or a star athlete like his father, we had to let that go," said Ursitti.

With such a broad, expensive and increasing diagnosis, support and care for each autistic child depends on the family's unique financial and emotional dynamic. Some families have had to rethink dreams, move across state lines, change professions and sometimes alter a marriage when adjusting to life with an autistic child.

Becoming the Advocate

For some families, the diagnosis was a call to action.

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In 1999, Kim Stagliano and her husband, Mark, of Bridgeport, Conn., received a double diagnosis. Doctors told the Staglianos that their two daughters Mia, who was 3 years old, and Gianna, who was 4 years old, had autism.

"Immediately we thought, 'what can we do to fix this?'" said Stagliano.

Within the folder packed with pamphlets that Stagliano received from her doctor, she said she tried to find a list of treatments or educational services, but failed.

Stagliano recalled that the only advice she received was in a pamphlet that read: "There is no cure for autism. You can only hope to give your autistic child the most comfortable life possible."

Stagliano connected with many families whose children also had autism to better understand her daughters' diagnosis and treatment options. By the time her third daughter was diagnosed with autism, Stagliano decided to share her autism experience with others.

Hear Kim Stagliano tell her story.

Stagliano is now managing editor for Age of Autism, a blog that provides information on the latest news and debates regarding autism.

"It makes my load easier to bear when I know I'm helping others in some way, shape or form," said Stagliano.

Markey said advocacy is a healthy coping method for families dealing with disabilities.

"Every parent chooses to advocate differently but the goal is to act," said Markey. "Too many families transition into depression after a diagnosis."

For Better or Worse

Unfortunately, such a transition is not hard to imagine for some families that face uncommon challenges in dealing with the condition.

Jennifer Wood remembers how difficult it was for her son Jason to receive a formal autism diagnosis nearly a decade ago. Wood says she grew frustrated after multiple doctor visits. Even after Jason's diagnosis at age 2, she said she did not fully understand what treatment options were best for Jason.

That's when Wood, a computer engineer living in Michigan at the time, said she toyed with the idea of going to medical school. When Jason began to have violent tantrums, she sealed her decision to switch careers. Wood attended the University of Hawaii medical school to become a child psychiatrist.

"There has to be honesty and openness on how overwhelming this is and how it's not what families have signed up for," said Markey. "It's creating a balance between acknowledging fear and frustration and not moping in it so you're able to carry on."

"I'm glad I'm doing this, despite the hardship of raising three children," said Wood. "Even now as a student I've had contact with [autistic] children and I feel I've already made a difference."

Jason's diagnosis also signaled the beginning of the end of Wood's marriage, she said. Her acceptance to medical school in Hawaii also contributed to her divorce. Wood is not alone. The National Autism Association, which is conducting a national divorce survey of autism families, estimates an 80 percent divorce rate among families with autistic children.

According to Markey, acceptance of an autism diagnosis is one of the most difficult stages for a parent's transition to the unexpected lifestyle.

"Sometimes parents exaggerate the progress their child can achieve," said Markey. "The disappointment is in realizing that the child often will not achieve a fully comprehensive developmental level."

Markey said an autistic child's lack of social interaction and emotion toward a parent may also contribute to the frustration.

"For a parent, an autistic child is not naturally gratifying -- the amount of energy they have to put in for an outcome from the child is doubled," said Markey.

The Child Left Behind

When Jason was 6 years old, he slammed his older sister Susannah's head against the wall, leaving her unconscious for several days, said Wood. Susannah spent a year in speech and physical therapy.

"I used to feel guilty when I watched her struggle to walk and talk and use the toilet again," said Wood. "Susannah still feels resentment toward Jason from that."

Because some autistic children require constant attention, Markey said, children without autism may feel threatened by their autistic sibling and neglected by their parents.

In school, more attention is given to Jason than to her daughters, said Wood. Her daughters Corina, 8, and Susannah, 12, are referred to as "Jason's sisters" by other students, not by their own names.

And at home, Wood struggles to keep a fair family dynamic. Her daughters feel there is a double standard with the way she responds to Jason's behavior and the way she disciplines her daughters, she said.

"[My daughters] don't see Jason's behavior as a disability -- they see it as a personality," said Wood. "They don't understand why he is not punished for actions the girls would normally be punished for."

Markey recommended that families step outside of the parent-child relationship and share with their non-autistic child stories and frustrations.

"So many times we look for support groups, but the key is creating a support group structure within a family," said Markey. "If there is open communication, a sibling will not be embarrassed by autism or overshadowed by autism."

Wendy Stone, director of the Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders, agreed. Although many treatment programs focus primarily on the development of the child with autism, Stone said inclusion of the parent into any treatment also important.

"The MO has been to treat the child only, but when you leave the parent out of the equation then it's not introducing all aspects in treatment," said Stone.

Moving Forward

With financial and educational services at times struggling to meet the growing number of autism diagnoses, more families are learning to adjust with or without outside support. Stories similar to those of Wood, Stagliano and Ursitti often reveal parents having to comfort their autistic child during tantrums while the family may experience their own physical, emotional and financial meltdowns.

According to Markey, oftentimes families become so consumed in what others can do for their child that they may forget that a loving and stable family life is also critical to a child with autism.

"Every family has to figure it out their own way what feels right," said Markey. "But overall they should be aware in a family that there's potential of isolation if there is no balance."

For Ursitti, who has still not heard Jack speak his first words, learning to adjust has meant learning to change her yardstick for success. It's no easy task; Ursitti said she sometimes finds it difficult to run errands with Jack during the day.

"It's horrible when you're already in an isolating situation and people who don't even know you will single you out as a bad parent because your child is 'out of control,'" said Ursitti. "Sometimes I think they don't get us."

But she said that even though it's hard at first, she has found that she is able to rise to the occasion.

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"Adjusting to autism is like strength training," Ursitti said. "At first you're really hurting but after a while you realize, 'Oh yeah, I can carry this.'"