Twelve-year-old Maria Nguyen of Boulder performed in Nevin Platt Middle School’s musical The Lion King, Jr. and will appear in CenterStage’s Shrek, Jr. at the Dairy Arts Center in July. She’s part of her school choir and enjoys parades and amusement park rides. She likes the Denver Art Museum, animals, and the mall.
She’s also on the autism spectrum.
“After seemingly normal development, we saw Maria change from the happy, interactive, inquisitive child that she had been,” says Maria’s mother, Melody McCoy, an attorney in Boulder. “We began to notice she didn’t respond when she was in the other room. When I took her out in the stroller, she got extremely fussy. If I would stop to talk to someone else or look at something, she would just lose it, and we were like, this is not right. And then the regression began.”
Maria became fussier and her tantrums lasted longer. She was less responsive, less able to follow age-appropriate directions, and was indifferent to typical child-like interests, such as animals and games. She also stopped using the language she once had. Maria was diagnosed with autism when she was four years old.
One in every 59 children in the United States has some form of autism, according to Autism Speaks, a nonprofit organization dedicated to improving the lives of those affected by the condition. Donna Murray, vice president of clinical programs and head of Autism Treatment Network of Autism Speaks, says that diagnosing autism is not easy. The challenges, skills, and sensitivities of people diagnosed with autism vary greatly. “It’s not like taking a simple blood test. It’s all clinical symptoms that can be somewhat different because it’s a spectrum,” she says.
Which is why now all diagnoses with autistic-like behaviors, including Asperger’s syndrome, fall under the umbrella term autism spectrum disorder (ASD).
While individuals are said to be on the spectrum if they demonstrate difficulties with repetitive behaviors, verbal and nonverbal communication, and social skills, the way in which an individual represents may range from being completely dependent to entirely independent; hence the degree to which a person’s life is affected by ASD also differs.
Identifying ASD behaviors can be confusing and complicated, but there are signs for which parents can be on the alert.
Identifying the Signs
Though there are a wide range of signs associated with ASD, Autism Speaks lists certain milestones to look for and behaviors and sensitivities of which parents should be aware.
By six months old, children on the spectrum display few smiles or engaging expressions, and little or no eye contact; by nine months, little to no reciprocating expressions; by 12 months, little to no babble and gesturing, and a lack of response to the child’s name; by 16 to 24 months, few to no words.
At any age, children on the spectrum display: intense reaction to stimuli such as lights, noises, smells, varying levels of touch, lack of eye contact, loss of speech, repetitive behaviors, opposition to a slight change in routine, delayed language development, and difficulty understanding others’ emotions.
“Primary care physicians, psychologists, and educators can help with early identification in a number of ways,” Murray says. She oversees a team of professionals who answer questions and provide resources, such as tool kits for families of newly diagnosed children, and information on where to get a diagnosis.
Taking the First Steps
The first steps after a parent notices suspicious behavior, should begin with a screening.
The American Academy of Pediatrics now recommends all children do two screenings for autism at wellness exams between the ages of 18 to 24 months. Parents can request a screening at the earliest sign or complete an online evaluation, which can be found on the Autism Speaks website. A screening can also be requested from the state’s Early Intervention program if the child is under the age of three. Regardless of who does the assessment, it should include interaction between the person evaluating and the child, and it should incorporate a play-based test called Autism Diagnostic Observation Schedule (ADOS).
The wait for diagnosis can be long—nine months or longer. However, there are many things parents can do in the meantime. They can learn more about autism, begin a file with the child’s medical information, and find out what to expect from the evaluation. It is also not too early to look into intervention therapies, which regardless of diagnosis, can help with developmental delays. A diagnosis will come with a variety of recommended interventions and therapies that parents can pursue, that are specific to the individual child’s needs.
Build a Support System
Reaching out to others who can provide emotional support is an invaluable resource. McCoy’s husband, Thanh Nguyen, a stay-at-home dad, went to a few parent support groups, which he found helpful.
One of the first resources McCoy located was the Child’s Learning Center at The Speech, Language, and Hearing Sciences (SLHC) at the University of Colorado in Boulder.
“That was an extremely good resource,” McCoy says of the CU program. She still remembers one of the teachers there, Amy Thrasher, who introduced McCoy and her daughter to Story of Friendship, a program consisting of storybook reading and video-modeling that Thrasher developed to support children with autism. Thrasher also connected McCoy with informational materials such as The Hanen Program: More Than Words.
Because of Maria’s behavioral challenges, McCoy enrolled her in The Joshua School, which offers intensive interventions for children with autism. “They did a lot for her in two years—she was there for first and second grade—in terms of getting her to control her behavior in a school setting so she could learn,” says McCoy. The school was costly, though. Luckily, after her time at The Joshua School, Maria had acquired enough behavioral skills to follow a typical kid in a regular school setting, so McCoy enrolled her at Creekside Elementary School (Boulder Valley Public Schools) beginning in third grade.
Responding to ASD Behaviors
Learning how to respond to behaviors associated with ASD can be overwhelming for families as well as outsiders. Because the disability is not a visible one, the behaviors children display can be surprising to others.
This is the case with Maria now that she is older; people don’t expect a 12-year-old to have delayed speech or a fit. McCoy says the best response is for others to show “tolerance, patience, or just chill. I’ll handle it. I do know what I’m doing. The occasional time that she has a meltdown, I’m aware of it. I’m standing right there.” Or better yet, she suggests, “Ask me, ‘Are you OK? Is she OK?’”
When behaviors come out at home, discover strategies that might change the behavior. “[Maria] was a tantrummer,” McCoy says. “This is a kid who would run through our house turning over tables and chairs, screaming; she would flail on the floor and hit her head. She would hit me.”
McCoy found ways to work with her tantrums. They would sometimes walk to Fairview High School to listen to the marching band. The sounds calmed her. Other times they would walk over to Viele Lake and sit on the dock. “We’d watch the water flow. That was always a good thing to do.”
Seeking Out Activities and Resources
As with any child, focusing on skill sets rather than deficiencies can enhance quality of life. “Some autistic children develop deep knowledge around one topic such as math, computers, or geography,” Murray says. “It’s important we discuss these strengths with their teachers.”
McCoy has been seeking activities for her daughter ever since Maria’s diagnosis eight years ago. She wants what any parent wants—for her child to be able to do things she likes and to be around others her age.
She’s taken Maria to events designed specifically for people with autism, but Maria doesn’t like those as much. She is drawn to performances and public events, and loves CenterStage’s Tapestry Theatre, as well as gymnastics. She also likes converting numbers into Roman numerals, memorizing different cities and countries, and learning languages.
“Everyone’s autism is different,” says McCoy. “There is a wide, wide range. You just have to try everything.”