Norris Family: Learning to Adapt
Looking back, there were signs, vague but persistent, that Noah was a little different from other children. As an infant, the tow-headed boy would sit in his bouncy seat, mesmerized by the light glinting off leaves and shimmering through the windows of his home in the Pacific Northwest. As a toddler, he was both connected to his mother and disconnected at the same time. He would stare at his mother's face but avoid hugs. He didn't raise his arms to be picked up, the way other youngsters do. When playing with toys, he would stare at their parts, as if he were trying to figure out how they worked, recalled his mother, Kriston Norris.
Shortly before his third birthday, Ms. Norris took Noah to a family celebration. Noah didn't talk much or gesture, and what he did say was hard for most people to understand. He associated people with their vehicles, so his grandmother was purple van. Ms. Norris's aunt, who was also Noah's pediatrician, later called her to talk about referring Noah for developmental testing. She remembers her aunt's words: "'I think it's time to look into some things. We might look for autism.'"
A mother knows
The minute she heard the word, 'autism,' Ms. Norris said, "I knew." Even before the diagnosis came – before the day spent with developmental specialists at a university clinic – she just knew, unequivocally, the way parents sometimes do. "I knew, without a doubt, that Noah had autism."
Ms. Norris, a participant in the Simons Simplex Community, shared her story in the hope that it would help other families. She is calm and patient, detailed and friendly. She already was familiar with autism by the time her aunt mentioned it. She had studied the then-rare disorder for a high school report in the 1980s, learning about the debunked theory that uncaring "refrigerator" mothers caused autism. She even tried, unsuccessfully, to work with children with autism as part of a class she took for students interested in becoming teachers.
Life took her in a different direction – at least temporarily – and she worked in retail management for Banana Republic and Nike after graduating. Noah would change that career path.
Now 13, Noah was diagnosed in 2003, about a decade into the storm of newly-diagnosed autism cases that began gathering in the 1990s. Public awareness campaigns and research efforts were struggling to catch up. His diagnosis came on a winter day. Afterwards, his stunned parents left the clinic in Portland, Oregon, with the word "autism" on a piece of paper – and not much more to guide them.
"When he was diagnosed, there was no road map. Autism Speaks wasn't around. There was no packet of information handed to parents saying, 'This is what you do,'" Ms. Norris recalled. The specialists did not paint a rosy picture. "The thing that traumatized me is they started to tell me what he couldn't do. They didn't give you a lot of hope. They didn't tell you what to do."
First steps on the autism journey
But fortunately for her, some help was on the way. She got a call from an assistant at the clinic about an early intervention study at a hearing and speech institute in Portland. The research involved two women who would become well-known in the field: psychologist Brooke Ingersoll and speech-language pathologist Anna Dvortcsak. Ms. Norris enrolled her son in the first of two studies there in which he would participate. Research team members observed Noah and taught him how to use gestures, she recalled. In the second study, researchers investigated a new way of teaching communication skills to children with autism spectrum disorder.
His whole entire life has been changed because he was in the research projects.
Participating in educational research can be a way to get cutting-edge therapies at no cost. There are risks and no guarantees, however. Some children may be placed in "control groups" that do not receive the new therapy, or the treatment being studied may be ineffective. But in Noah's case, his mother said, he received the therapies, and they worked for him. "His whole entire life has been changed because he was in the research projects," she said. Dr. Ingersoll and Ms. Dvortcsak described the intervention they developed in the book Teaching Social Communication to Children with Autism, published in 2010.
Noah attended a special education preschool through his school district. His mother also enrolled him in another preschool, this one for typically developing children, to push him outside his comfort zone. To ease the transition, his parents paid for an aide to help him there – but only when absolutely necessary.
Adapt + Autism
"Adapt" became their family watchword. Noah, his parents and baby sister, Sara, would adapt to life with autism, each in their own way. "He feels a great sense of accomplishment when people say he's learned to adapt," she said. "It's a great word."
It might have been easier to "hole up," staying home to avoid the stress of taking a youngster with autism to play dates, restaurants or the mall, she said. Many parents say they've endured icy stares or unkind comments from strangers when their children flapped their hands, rocked or had a tantrum in public. Ms. Norris knew that when she went to McDonald's, her son was going to explore by "licking the entire booth. I had to let that go, or stay home." She opted to go out: "I never wanted to keep him hidden," she said. Her friends were understanding.
She also signed up her son for a study of Qigong Sensory Training with Dr. Louisa Silva. Qigong is a form of massage taught to parents; in videos, it looks like gentle patting on the head and body.
Afterward, Ms. Norris noticed that Noah's sleep and awareness improved, and his diet expanded. Like many children on the spectrum, Noah was a picky eater, subsisting mainly on peanut butter sandwiches. One day his mother was stir-frying a medley of zucchini, mushrooms and other vegetables that, frankly, small children rarely find appealing. Noah pulled up a little chair to the stove and asked, "What's that smell? What's that thing?" Then he wanted to taste a sampling of the gritty, chewy and strong-flavored vegetables. His mother was amazed. He was opening up, in small ways, to the world around him.
Eager for more information, she searched the internet and found the Interactive Autism Network. There, she learned about the Simons Simplex research into families that have one child with autism. The entire family went to the University of Washington to give blood and complete screenings for the project. Like other Simons families, she hoped the research would improve medical knowledge about autism.
As a parent, Ms. Norris did not focus on why her son had autism. Since he was her oldest, she didn't compare his growth to anyone else's. "I learned to mother and parent Noah as Noah is." His family embraced autism as a facet of Noah. Noah learned to be comfortable with the label, too.
Noah teaches his class
In first grade, Noah made a presentation to his class about his autism. He wanted his classmates to "know why I wandered around the room and other stuff that I did – like chew on stuff," Noah explained to us via email. Noah recalled the presentation as fun and positive. He remembers his classmates being happy when he invited them to go with him to a social group run by an autism specialist.
His mother said the result was positive: other kids in their small Oregon town accepted Noah for who he was, differences and all. Noah excelled in math, and struggled with handwriting, motor skills and sensory problems in elementary school, not unlike other children with ASD. For example, sometimes he would chew on items without being aware of it.
A new challenge for Noah
This is different. This isn't autism.
As time went on, his family noticed something else about Noah. By the time he was in sixth grade, he would walk through the kitchen and touch objects in a certain pattern. He would ask teachers the same questions in lengthy question-and-answer sessions. He would walk sideways and backwards sometimes, so that he would face in the same direction as the family's green Ford Expedition parked outside. And he would spin, in patterns of four, even through the aisles of the supermarket or near the sidewalk curbs, where he could fall. He would wander away to investigate a question that was hounding him – which classroom was better, which playground was better – even though he knew he shouldn't stray.
Spinning and wandering, of course, are symptoms of autism. Having "restricted, repetitive patterns of behavior" are partly diagnostic of ASD. But Ms. Norris said to herself, "This is different. This isn't autism." Her son was upset by his behavior, something that wasn't necessarily true of behaviors coming from autism.
Her son's pediatricians referred her to a psychiatrist to investigate her concerns about Noah. The diagnosis: Obsessive Compulsive Disorder (OCD), a type of anxiety disorder marked by obsessions and compulsive rituals that are time-consuming, distressing and even disabling.
In recent years, doctors have focused on the presence of other disorders in people with ASD. Studies of children with autism have found that from 8 percent to 37 percent also have OCD. Common compulsions included having their parents perform daily routines a certain way, or having to ask a question or say the same thing over and over.1, 2, 3
Getting the OCD diagnosis meant Noah could get appropriate treatment – in his case medication and therapy – to help him "push back" against the intrusive thoughts and compulsions that "bully" him. His mother met with the IEP team at school. The school arranged for students to help Noah with his tray in the lunchroom, when he had to spin or walk a certain way. As they did in first grade, many classmates accepted his OCD and wanted to help. Once in a while, a kid would make an unkind comment about Noah's behavior, but another child would respond, "That's how Noah is, he's really smart, leave him alone," his mother recalled.
Noah vs. the OCD bullies
Noah works hard to wrest control of his life from his OCD "bullies," which try to force him to spin and perform other rituals that he doesn't want to do, his mother said. When he grows up, Noah said, he wants to use his experience to help other kids with OCD. He wants people to know that OCD "is not like a behavior thing" he can turn off and on, he said.
Noah is in middle school, and doing better managing OCD, Ms. Norris reported. Like other boys his age, he likes to play outside, ride his bike, "look up stuff" online and listen to music.
Ms. Norris now works as a special education aide to students with special needs. She uses some of the skills she developed parenting Noah to guide other children through their school day. For instance, she may draw circles around pictures that students are supposed to cut out, making it easier for those with delayed hand skills to accomplish the task.
She wonders what is ahead in high school, what challenges are around the corner for a teen with autism and OCD, and a family dedicated to helping him. One expects this family will do as it's always done: "adapt."
About this profile
Ms. Norris was one of many SSC@IAN members who responded to our request for families to feature in articles. We extend our thanks to the parents who contacted us, volunteering their time so that their stories might help others. More families will be featured in future articles. If you are an SSC participant and would like to included, please email firstname.lastname@example.org.
Obsessive Compulsive Disorder information from National Institutes of Health
- Leyfer, O.T., Folstein, S.E., Bacalman, S., Davis, N.O., Dinh, E., Morgan, J., Tager-Flusberg, H. & Lainhart, J.E. (2006) Comorbid psychiatric disorders in children with autism: interview development and rates of disorders. J Autism Dev Disord. 2006 Oct;36(7):849-61. View abstract.
- Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T. & Baird, G. (2008) Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. J Am Acad Child Adolesc Psychiatry. 2008 Aug;47(8):921-9. View abstract.
- Joshi, G., Petty, C., Wozniak, J., Henin, A., Fried, R., Galdo, M., Kotarski, M., Walls, S. & Biederman, J. (2010) The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: a large comparative study of a psychiatrically referred population. J Autism Dev Disord. 2010 Nov;40(11):1361-70. View abstract.
Photos from Kriston Norris.