Brandelyn Bergstedt counts herself lucky for little things other people probably don’t think about. Her daughter, Claren, 8, doesn’t beg for toys on television and doesn’t whine about being bored. In fact, she loves books like, “Horton Hears a Who” and can recite many stories word for word. She stores hundreds of books in her head like a library. She loves music — Shakira is one of her favorites. But the smart, affectionate, special little girl has never had a play date and probably will never look forward to mommy-daughter spa days or other “normal” activities her mother had envisioned when her daughter was born. Every day her mother is reminded that their version of “normal” is now different. It’s been that way since Claren was diagnosed with autism at age three.
What is autism? Chances are you or someone you know has been affected by autism, or you’ve heard about it through the media. Autism spectrum disorders (ASD) refer to a set of complex disorders related to brain development, including Rett syndrome, childhood disintegrative disorder and Asperger syndrome. These disorders are characterized by varying degrees of impairment in communication, social interaction and repetitive behavior. Autism spectrum disorder can also be associated with difficulties in motor coordination, intellectual disability and physical health issues.
Dr. Bryan King, program director at the Autism Center at Seattle Children’s Hospital, introduces autism spectrum disorder by identifying two points. One, that the word spectrum is especially important in conveying the variability of both the presentation of the disorder, as well as the significance of the impairments that are associated with autism. “We can see autism affecting someone in the way that might be quite subtle, such as an inability to make good social connections, and it can go all the way to someone who is non-verbal and completely pre-occupied with very rigid and stereotyped behaviors that get in the way of their ability to do much else,” says King.
Within these two ends of the spectrum, there is everything in between. King aptly states, “If you’ve seen one person with autism, you’ve seen one person with autism.”
There are commonalities, however, and autism is largely defined by two core areas of difficulty: the first area being a deficit in social communication and interaction, the second area being a restrictive, repetitive pattern of behavior or interests. Another defining feature of the disorder (though not specific to autism, but for anything to rise to the level of disorder) is that the symptoms must cause “clinically significant impairment,” that is, the presented behavior must significantly interfere with everyday life for the individual.
King remains optimistic regarding social acceptance of those with the disorder. “One of the really positive outcomes of the fact that the autism is becoming increasingly recognized is that people are seeing just how common it is, that at some level the stigma associated with having autism seems to be diminishing a little bit. We can have a building that says ‘Autism Center’ out front, and people are willing to drive up and walk in.”
A day with Claren It started with a car ride from her Bellevue apartment to Little Bit Therapeutic Riding Center in Woodinville, where Claren takes weekly riding lessons. Claren picks “Illegal” by Shakira from her mom’s iPod. As the song comes to a close, Claren asks with much urgency, “Mommy, what do you have?” and her mom starts listing off the songs that are available once again. Claren can’t stand not to hear her favorite song finish – it’s almost a painful experience, her mom explains.
“One of the hardest things to get used to is that you can’t just teach her to deal with shutting off the music mid-song; no matter how consistent we are, she has the same reaction every time. But there is a distinction between what Claren wants and what is good for her,” she says. Later on during the car ride, Brandelyn tries to engage Claren in conversation, but at one point the little girl simply stops replying, and says she doesn’t want to talk anymore. “When she’s sick, it’s harder for her to form responses,” Brandelyn explains. Claren wasn’t feeling well this day.
At the riding center, Claren reads a list of what will occur. “Give carrots to Gigi. Pet Gigi …” Tall for her age and wearing furry black boots and a purple down jacket, Claren hoists herself onto the horse. Her mother watches as the horse is slowly walked around the arena with instructors on both sides of Claren and another leading the horse. She benefits greatly from her weekly lesson, which not only promotes motor skills but also helps with focus, her mom said.
Brandelyn is especially proud of Claren’s riding lesson, given a recent setback in the fall. On this particular day she tried to delay getting on the horse saying, “You can go potty,” (Claren confuses her pronouns, often referring to herself as “you”). Brandelyn was confused because she had just used the restroom. “This is where I kick myself; I didn’t clue in fast enough. She was trying to cue me that something was wrong,” she says. Her mom and the instructors could only stand by as Claren began to meltdown, refusing to leave the platform because she wanted to ride, but refusing to get on the horse, too.
“I could see it in her eyes. Almost like she was begging for help but didn’t know how to ask.” Her mother imagines that, during her frustrated episodes, Claren’s mind might be like a television that has been switched to a channel that only receives static.
After her lesson, Mom gives Claren several options for lunch and she chooses Panera in downtown Bellevue. As soon as the car starts, Claren asks with a serious and low voice from the back seat, “Mommy, what songs do you have?”
“Here we go again,” her mother says with a laugh. “There is a lot of repetition in our day. I don’t really notice it, but other people do. Sometimes I forget how unusual it is.”
As she sits down to lunch Claren says, “They won’t sing ‘Happy Birthday’ here.” Since her second birthday, Claren cries when she hears the birthday song. When she hears it she says, “You can walk out,” which is her way of saying she needs to leave. And they do. On this day she hears music playing faintly in the background and says, “It’s not Tchaikovsky.”
Mom carefully monitors Claren’s food intake. Food is a sensory experience for her but she can’t properly sense when she’s had enough. She struggles a bit using her fork and spoon.
There’s a bit of time to kill before her occupational therapy appointment so her mom suggests she pull out a book. If you ask her what her favorite book is, chances are she won’t respond. “She’s used to people trying to engage with her, to get her out of her world, but sometimes she doesn’t want to come out,” her mom says.
“Claren reads ‘Yellow Elephant?’” she asks. Her mom prompts her to say, “I will read.” Not only does she often mix up her pronouns, she also asks permission to do things most kids simply do, like read. Her reading skills seem impressive – but then you realize her memory skills are on display. And they are amazing. She’s not reading, she’s looking at the pictures and reciting the book, word for word.
After lunch, mom and daughter arrive at Bothell Pediatric & Hand Therapy. Mom sneaks out briefly to pick up some groceries; she sometimes uses physical or occupational therapy appointments as a time to run errands (she admits that it takes much less time without Claren along). Claren has a close and strong support system in addition to her mom, including her father, her grandparents and several uncles.
The clinic is full of racing children and Claren is led to a brightly colored room with larger-than-life toys, pillows and even a golden retriever service dog. Claren’s therapist goes over her schedule – made of pictures. First he sets her up in a hammock suspended from the ceiling, and she lies on her stomach and works on a puzzle. The pressure allows her to focus more than she has all day. Then she spends time in the computer room, where she typed, “My name is Claren.” Writing is difficult for her. One of the big goals is for her to write in pen, as well as master tasks like dribbling a ball 10 times in a row.
On the way back from occupational therapy peek-a-boo is played. Back at her home, Claren immediately sits down with a book, asking “Claren will read ‘Happy Birthday Little Pookie?’” In the next few hours, Claren will perform a show in the “dance studio” down the hall before dinner, and then have bath time and stories before bed. “Bedtime is when there is a lot of affection, it’s a nice way to end your day,” her mom says.
Claren heads to the “dance studio,” which is actually a yoga studio in their building. As she gets closer, Claren says, “It’s not Tchaikovsky.” No one else even hears music for another couple of feet. Claren sets up her mat and goes through several children’s yoga cards her mom brought, reciting the poems that go with each pose and struggling a bit to get in the right position. Her mom watches from a nearby bench and says, “I wouldn’t change Claren. But not knowing what she’s thinking, feeling, or what she hopes for is so incredibly hard.”
Claren moves her mat to the mirror and stands in her best version of a ballerina in first position. Her mom says, “Show us what you got!” Claren gives her a blank look. “That means show us what you can do!” Still Claren is confused. Then her mom starts reciting “Dancing with Degas,” a children’s book and Claren begins to move around the room. She whips around, not very gracefully, but with purpose. She’s smiling and giggling and occasionally bumping into the mirror.
When the story comes to an end, she stops dancing and curls up on a mat, a tired, yet accomplished ballerina.
Claren’s dance is a lot like her – little out of rhythm, but with no shortage of heart.
What the Research Says
Dr. Sara Webb, a research associate professor and affiliate at the Center on Human Development and Disability at the University of Washington, is researching the brain behavior in individuals with autism spectrum disorders.
Sara Webb’s work looks at what parts of the brain are related to presented behavior. She uses this information to understand more about the genetic genealogy of the disorder. As there is no “biological test” for autism, she looks at sub-components of behaviors such as attention-perception learning (how children with autism visually process and attend to social information) and memory in an attempt to better understand their relation to social, language and behavior disruptions seen in the disorder. “By breaking it into smaller pieces we can understand the diversity and the variability in the behaviors that we see. Something like autism is so big to understand as a whole, we try to break it into smaller component pieces,” explains Webb.
Looking at physiological signals the body gives allows Webb to see how kids are processing information in their environment. “For example, a child with autism may not be interested in looking at another person in the face, so that is the behavior you see, that the person is not making eye contact, and we can use brain, body and heart rate responses to understand more about that behavior.”
Webb contributed to work recently featured in TIME magazine’s “Top Ten Medical Breakthroughs,” identifying the benefit of early intensive intervention for children with autism using the Early Start Denver Model. The research shows that receiving early intervention resulted in improved perception of social stimulants and normalized patterns of brain responses under social attention, faster and more similar to “neurotypical kiddos,” as Webb calls them.
“We know of more genetic disorders that are related to autism than we knew 15 years ago, we know in some cases that there are known causes of autism in terms of the genetics. I think we need more work to understand why childhood disorders are more prevalent today; autism is not the only one we’re seeing more cases of,” she says. Webb is hopeful, however, that as more links are found between genetics and behavior, more will become clear about the causation of the disorder.
Meet FEAT FEAT stands for Families for Effective Autism Treatment. FEAT of Washington is a nonprofit organization that was founded in 1996. Its mission is to support families and help them connect to science-driven clinical intervention techniques. Learn more about this Bellevue-based organization at featwa.org.