“Your child has autism.” Experts say that far too many parents are hearing those words today.
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According to a 2009 The Centers for Disease Control (CDC) report, 1 in 110 children is diagnosed with an autism spectrum disorder (ASD) comprising Asperger’s, autism and Pervasive Developmental Disorder – Not Otherwise Specified (PDD – NOS).
An estimated 1.5 million children have been diagnosed in the U.S. alone, and millions more are affected worldwide. The prevalence of the condition has increased 600% over the last two decades, according to Autism Speaks; 20 years ago, only 1 in 2,000 children was diagnosed with ASD.
Experts say it is common for parents to grieve when they learn their child has been diagnosed with autism. Anger, frustration and worry manifest as parents grapple with the fear that the success and independence they had expected for their child may actually not occur, says Lee Grossman, president and CEO of the Autism Society. Grossman’s son Vance, now 22, has autism.
“I was in total denial and mad as hell,” says Grossman.
“My guesstimate is that 95% of kids diagnosed with autism will need a lifetime full of services,” Grossman says, to treat the comorbidities that often accompany the disorder like gastric, metabolic, immunologic conditions and neurologic conditions that may include seizures, as well as challenges of adult life like employment, recreation, transportation and housing.
Sometimes, though, parents feel relief, says Peter Bell, executive vice president of programs and services at Autism Speaks. Bell’s 18 year-old son Tyler also has autism. “Oftentimes, before diagnosis, parents feel isolated and lonely and now have a name to put to their concerns and a reason to explain their child’s differences.”
Early Intervention Matters
Early detection and subsequent early intervention are vital to diagnosing ASD.
Pediatricians must be attentive to developmental milestones; as recently as 10 years ago, pediatricians would often dismiss delays in milestones.
Today, the situation is better, but not perfect. The American Academy of Pediatrics has instituted two autism screening programs during well-baby visits for infants 18 and 24-months old, but these are only recommended, not mandated so compliance is not consistent, says Dr. Lisa Wiggins, a developmental psychologist and epidemiologist at CDC’s NCBDDD.
Wiggins refers parents to the CDC’s “Learn the Signs Act Early” program, which promotes early identification by helping parents pay attention to developmental milestones. And tools like Autism Speaks’ “100 Day Kit” help families through the days following diagnosis.
It’s OK for parents to feel things after their child has been diagnosed, Bell says, but the quicker they can get to someone who can help or educate, the quicker they begin to feel instrumental in getting the best care their child needs. “The last thing you want to do is communicate a sense of ‘goodbye and good luck.’”
Support groups can help parents learn about reliable resources, schools and professionals. These groups can also offer emotional support, says Grossman, who admits to initial resistance about attending. “Somehow I got there. Within the first 10 minutes I was moved like I’d never been moved before.”
The need for support doesn’t start and end after diagnosis. Preschool, kindergarten and elementary school are major transition periods as is adolescence, says Grossman. And, the bridge from high school to adulthood is the greatest transition with much more significant and longer lasting effect. It’s important for families to reach out during these periods to other families and professionals in the community.
Varied Symptoms Means Varied Treatments
Because autism is a spectrum disorder, symptoms range from mild to severe and the level of developmental delay is unique to each individual. Early diagnosis helps identify where children are on the spectrum and map out individualized treatments, says Wiggins.
“The type of intervention, the frequency of intervention, and whether or not it addresses your own child’s particular strengths and weakness is key.”
Affiliated with an early intervention program in metropolitan Atlanta, Wiggins says that early intervention benefits skill development.
The Early Start Denver Model (EDSM) is an example of an early intervention program in which intervention strategies are delivered through an interactive play activity that is child directed to ensure the reinforcement is natural and based on activities the child enjoys, says Dr. Geraldine Dawson, chief science officer at Autism Speaks.
Skills such as teaching eye contact are not taught in isolation. Rather, multiple skills are taught within a shared playful activity, such as gesturing and responding to a request.
Parents can follow through with these activities at home. “It’s much like what all parents do; the activities are just done with greater frequency,” Dawson says.
In a recent research cohort trial, the ESDM model delivered for two years to young children with ASD resulted in significant improvements in IQ, language, adaptive behavior and less severe ASD symptoms.
Also, scientists from many different disciplines at the University of Washington, are conducting an intervention trial with infants who are at risk for ASD to determine if autism symptoms can be specifically reduced or can even prevent autism in some cases by starting intervention at the earliest age possible, says Dawson, who was founding director of the UW Autism Center, which has been designated an autism center of excellence by the National Institute of Health.
A Roster of Practitioners
There’s an array of practitioners that comprise the clinical roster: medical doctors and dentists experienced in working with ASD patients and speech, behavioral and occupational therapists, who can help a youngster acclimate and normalize existing sensory abnormalities.
The lack of comprehensive care in local communities is a significant health challenge for families with autistic children. To address this, Autism Speaks launched the Autism Treatment Network (ATN) which currently includes 17 leading children’s hospitals and academic medical centers in the U.S. and Canada, Bell says.
Parents must explore and be open minded and not stay wedded to one intervention, Grossman says.
Bell says that when Tyler’s autism was identified in 1996, the physician provided a dismal diagnosis that provided little hope for his development, but Bell and his wife Liz remained undaunted.
The Bells read Let Me Hear Your Voice, a book about a family whose children were diagnosed with autism but recovered through intensive and strongly structured behavioral approaches called Applied Behavioral Analysis (ABA).
“The book bucked conventional thinking, and gave us a sense of hope,” says Bell. The couple put together an ABA program and made a commitment to provide all the Bell children, including Tyler, with as normal a life as possible.
It was difficult early on, Bell notes, but now at 18, Tyler is quite mainstreamed--he has developed a passion for painting and will soon showcase his work in a local art show. “He is a tremendous young man,” says Bell. “I couldn’t be more proud.”