It began with repeated ear infections. Christine DelHomme, a New Orleans resident and mother of three, recalls the chain of events that led to her daughter Catherine's autism diagnosis. Catherine suffered several inner ear infections and a loss of verbalization, which seemed to be a product of diminished hearing capacity.
"There was a lot of grunting and a lot of groaning, a lot of pointing," DelHomme says. But her daughter's attempts at speech stopped.
A pediatrician suggested DelHomme seek specialists to test Catherine's speech and hearing. When the audiologist said it was so precise Catherine could "hear a feather fall on the floor," DelHomme realized that the issue was not physical. After four months of testing, Catherine was diagnosed with autism in 2003, at age 2.
Autistic disorder, Asperger's syndrome and pervasive developmental disorder all fall under one umbrella diagnosis: autism spectrum disorder (ASD). Its growth is undeniable: the Centers for Disease Control and Prevention (CDC) report that as of 2012, one in every 68 children born in the U.S. was diagnosed with the disorder (up from 1 in 150 in 2000). Doctors aren't sure if there are more ASD diagnoses due to increased awareness and streamlined testing tools or whether the disorder is appearing more often.
People with autism are often diagnosed with co-morbidities (related conditions), such as mood, anxiety or sensory processing disorder or language processing delay. These manifest during the early phases of cognitive development, but parents aren't always aware of the warning signs.
"As a young parent, I guess I really didn't understand what were these milestone things that [the healthcare professionals] were looking for," DelHomme says.
If a baby does not babble, coo or gesture by 12 months, say single words by 16 months or two-word phrases by 24 months, or if there is a loss of language or social skills at any point, he or she should be evaluated by a doctor. Early diagnosis is key.
"As we are progressing toward [viewing] autism spectrum disorder as a learning disability, it is important to remediate those functional deficits as soon as possible," says Pat Blackwell, a developmental psychologist. "Otherwise, the child will not have the skills needed for play, school, or social interaction ... to not remediate will further impair those abilities."
When a parent or caregiver suspects an intellectual delay, the first step is to consult a pediatrician, who may refer the individual to a doctor or psychologist specializing in developmental pediatrics. A team of specialized therapists will begin a battery of diagnostic tests to determine whether the child is on the spectrum.
These evaluations are performed at diagnostic centers; however, they often have long waiting lists. Private options are available, but these psychologists sometimes do not accept insurance. Insurance policies may not cover private testing, or caregivers may be responsible for submitting medical claims.
Faced with a six-month waiting period, DelHomme chose to enlist a private evaluation service despite the cost.
"By the time [caregivers] get to that point, they don't want to wait six months — their child is in crisis already," DelHomme says.
After an autism diagnosis, the referrals to specialized therapy programs begin. Most doctors recommend an occupational therapy program.
"The most common concern is the child regulating themselves: task management, being able to tolerate being in their environment, and sensory sensitivity and how they're responding to stimuli," says Sharon Crane, a licensed occupational therapist and co-owner of Crane Rehab Center. She stresses the need to continually integrate the suggested therapies into the child's day — not only during the designated therapy time. If the skills are "compartmentalized" into only the hour or two devoted to therapy, the child will never generalize those skills.
"We go through the activities of the day and give suggestions on how to perform these routines in a way that includes the therapeutic activities," she says.
Kate Lacour, a licensed art therapist and co-founder of NOLArts Learning Center, suggested supplementing the multidisciplinary therapies that treat ASD with creative expression.
"Creative, social, community and academic interventions are not alternatives to medication and [therapies such as] applied behavior analysis (ABA), but complements," Lacour says. "Playing music in a public youth jazz venue, painting a mural with peers, baking in a youth cooking class — these represent chances to generalize skills ... like 'tolerating waiting without whining.'"
As Sarah Ambrose, music educator and co-founder of NOLArts has observed, creative expression is just as essential for kids on the spectrum as for neurotypical children.
"[Art is] that big thing in our lives that sparks joy," Ambrose says. "[It's] what's missing from your average day of therapy. [Art is] the everything else. And every human deserves the everything else."
After years of consistent multidisciplinary treatments such as ABA, art therapy, specialized ballet lessons, OT and speech therapy, not to mention parental and community involvement, DelHomme sees Catherine's social connections and academic success as indicators of her progress. At age 15, Catherine is an honor roll student and performs in her dance school's annual recital. DelHomme offers simple words of encouragement to families like hers: "It gets better."
There are many local resources for individuals and families in New Orleans to ease the transition from diagnosis to treatment. DelHomme urges caregivers to remember they are their child's biggest advocate.
"If you're not happy with the [professional] you're working with, change," she says. "Find somebody that fits your child's needs."