AUTISM: The signs, the diagnosis, the treatment
Sunday, March 04, 2007
By ERIN MIDDLEWOOD Columbian Staff Writer
Soon after her youngest son was born, Stephanie Wilson noticed he was different from his older brother. Jason cried 12 hours a day. He didn’t hit his developmental milestones. He avoided eye contact.
Doctors brushed off Wilson’s concerns.
“The doctors were saying he’s OK, so I thought he must be OK,” Wilson said. “I’m just a mom.”
It wasn’t until Jason was 4 that he received the diagnosis his parents dreaded: autism.
When Wilson and her husband, Scott, later met other parents of autistic children, they discovered their experience was common.
Autism affects more children than previously thought, according to numbers recently released by the U.S. Centers for Disease Control and Prevention. One in 150 children has autism, a developmental disability that causes impairment in social interaction and communication. It’s unclear whether the rate is rising. “The definition has broadened,” said Geraldine Dawson, director of the University of Washington’s Autism Center. “We can’t determine yet if better diagnosis is the source of the higher number.” There’s no known cure for autism, but research is starting to unravel its mysteries. A study published in the journal Nature Genetics last month pinpointed two genetic links related to the complex brain disorder. The finding holds promise of a genetic test for autism risk. “It would have been wonderful to know right from birth,” said Stephanie Wilson of Jason’s diagnosis. “He would be so much better now if we’d had an earlier diagnosis.” After a year of intensive treatment, Jason, now 5, recently said “Mama” for the first time. His mother wonders how many more words he would say by now if he had started treatment earlier. The later the treatment, the more ingrained children’s behavior becomes, Dawson said.
“That doesn’t mean intervention isn’t effective later, but when it’s earlier, children tend to do better,” she said.
Screening now can reliably diagnose a child at age 2, although researchers are developing methods to identify autism in babies, Dawson said.
The red flags: fixating on certain objects to the point of avoiding exploration at 8 months, or failing to point, make eye contact or turn when called at 12 months.
Skyler Murphy, 4, seemed just fine until he was about 16 months old, said his mother, SueAnn Murphy. That was when he stopped speaking or making eye contact.
“He just completely changed,” Murphy said. Five months later, he was diagnosed with autism.
About 25 percent of children with autism appear to develop normally and then regress, Dawson said.
But research suggests there may be early clues.
One study indicated children who regressed had trouble sleeping and settling as babies. “Maybe those babies were more neurologically vulnerable in some way,” Dawson said. Dawn and Jamie Montgomery noticed strange behavior in their son James when he was about 18 months old.
“He was an incredibly fussy little guy,” Dawn Montgomery said. “He loved to … do the same thing a bunch of times. He’d line things up.”
Dawn and Jamie Montgomery became increasingly concerned. Just before James turned 4, his parents took him to a developmental clinic where he was examined by five specialists.
“It was very traumatic,” Dawn Montgomery recalled. “They said, ‘Your son has autism. There’s nothing we can do.’”
Dawn and her husband refused to accept such a hopeless outlook.
They, like the Wilsons and the Murphys, attacked the problem on many fronts.
In addition to behavior therapy, the families also tried medical interventions such as chelation therapy, which flushes mercury from the body; vitamin supplements; and a gluten- and casein-free diet.
There’s no good scientific backing for these medical approaches yet, Dawson said, although studies are under way.
All the various treatments add up. The Wilsons estimate they spend $700 to $1,000 a month. A “for sale” sign marks their Prune Hill house. Scott Wilson, an airline mechanic, is seeking a transfer to Texas, where the cost of living will be lower for his family.
As prevalent as autism is, services still are lacking in Clark County, said Monica Meyer, who served on the state’s Autism Task Force. The Legislature created the task force in 2005 to improve autism services in Washington.
“We do not have in our community any really good diagnosticians,” said Meyer, whose 23-year-old son has autism.
The task force issued a report in December that recommended, among other things, creation of regional autism centers and screening for all children.
The state Legislature is weighing some of those proposals.
Until more diagnostic services are available, parents should pay attention to developmental charts and their own instincts, Dawson said.
“Make sure your child is acquiring language and social skills as he or she should,” she said, “and then just enjoy your child.”
The Montgomery Family
Diagnosis: Early on, James, now 7, appeared to be developing normally, his parents, Dawn and Jamie Montgomery, said. He was very fussy and would fixate on objects at 18 months, and at 3, his parents noticed he frequently stared into space. He was diagnosed with autism just before he turned 4. “They said, ‘Your son has autism. There’s nothing we can do,’ ” Dawn Montgomery recalled. “We were really upset.”
Approaches: Chelation, behavior therapy, infrared sauna, supplements, diet. His treatments cost at least $500 a month.
Breakthrough: James now looks his parents in the eyes, and plays well with his brother and sister.
Tips: “You absolutely need a support group,” Dawn Montgomery said. Find out more about the one she leads at www.james-project.com.
The Murphy Family
Camas
Diagnosis: Skyler stopped talking at 16 months old. He was diagnosed with autism at 21 months old.
Approaches: Chelation, behavior and relationship therapies, diet, preschool at J.D. Zellerbach Elementary, as well as at Building Bridges in Portland.
Breakthrough: After two months of treatment, including chelation and behavior therapy, Skyler started to talk again.
Insight: “If your doctor says your child is fine, find a new doctor,” SueAnn Murphy said.
GLOSSARY AND TREATMENTS
Autism: A neurologically based developmental disability that affects communication, social interaction and creative or imaginative play.
Applied Behavior Analysis: An autism therapy that studies and modifies behavior. Therapists teach skills that most children pick up on their own.
Chelation therapy: Intravenous treatment to flush mercury, which some suspect causes autism, from the body.
Gluten- and casein-free diet: Some believe that because autistic children often also have gastrointestinal problems, a diet free of gluten (a protein in wheat and other grains) and casein (a protein in dairy products) improves autistic behaviors.
Relationship Development Intervention: Therapy using play to help children build social skills.
EARLY SIGNS
Geraldine Dawson, director of the University of Washington’s Autism Center, said research indicates that children with autism often:
Fixate on objects instead of exploring their environment at 8 months old.
Do not point, maintain eye contact or respond to their names at 12 months.
A common misconception is that autistic children aren’t affectionate, said Emily Hoyt, a behavior analyst at Building Bridges in Portland. She looks for these behaviors:
Not talking at all by age 2.
Obsessive or unusual play, such as lining up toys.
Hand flapping.
Repeatedly opening and closing doors.
A general lack of social engagement.
For more information, visit www.firstsigns.org.
RECOMMENDED READING
Parents:
“Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals,” by Catherine Maurice, Gina Green and Stephen C. Luce.
“Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder,” by Jaquelyn McCandless.
“Facing Autism: Giving Parents Reasons for Hope and Guidance for Help,” by Lynn M. Hamilton.
“The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder,” by Carol Stock Kranowitz and Lucy Jane Miller.
“Unraveling the Mystery of Autism and Pervasive Deve