Coping with the Reality of Autism

By Janna Farley

Of all the things to worry about with the birth of a child, Misty McGaugh never gave autism a second thought."As a mom, you worry about if your baby will have 10 fingers and 10 toes," the 29-year-old Sioux Falls mom says. "Never did I worry about if my daughter would have autism."But then she caught a special about autism on "The View" last spring. The more McGaugh listened to experts talk about the developmental disability, the more she recognized the signs to watch for in her daughter, Makenna.

"As I watched the show and they were going through the signs to look for, I was in awe," McGaugh says. "I was thinking, 'This is my daughter.' " Of most concern: The then-newly minted 2-year-old was talking but stopped - often one of the biggest warning signs that leads to an autism spectrum disorder diagnosis.After talking with her physician at Makenna's regular well-baby checkup, the McGaughs were referred to the Birth to 3 Connections program. One month later, it was official: Makenna had autism.

Today, Makenna has speech therapy twice a week and occupational therapy once a week. When she turns 3 next month, Makenna will start going to the early childhood program at Hayward Elementary and will be in a classroom of other autistic kids. She's still not verbal, but she's learning sign language, and she will engage her parents in play. "Therapy has really done wonders for her," McGaugh says. "She can tell you 'more' and 'mine' with sign language. She grabs your finger and drags you over to what she wants."McGaugh's story is not unique.Autism, the complex developmental disability that affects the normal functioning of the brain and impacts development in social interaction and communication skills, is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 150 births, according to the Centers for Disease Control and Prevention. Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. It's four times more likely to occur in boys, but girls are not immune.

And this number is on the rise. In the Sioux Falls School District, for example, there are 112 students who have been diagnosed with autism, says Deb Muilenburg-Wilson, director of special services for the district. Twelve years ago, there were only eight.Why autism is on the rise is a cause for much debate. Some think there's a link between autism and vaccinations. Others credit doctors and specialists for simply getting better at identifying the disorder. Still others argue that parents just want a label to slap on behavioral issues.
Support for the child

Whatever the reason, an increase in the prevalence of autism has changed how parents, schools and specialists deal with the spectrum disorder and its varying degrees.A diagnosis of autism is life-altering, says Brittany Schmidt, director of the Autism Spectrum Disorders Program at Sanford School of Medicine of the University of South Dakota's Center for Disabilities. "There are no two ways about it," she says. "Autism is ... lifelong. I haven't met a family who wouldn't want it to be different."

Services available depend on the individual child's needs, as well as age, Schmidt says, and the availability of information and resources for autism has grown exponentially in the past decade. For kids younger than 3, there's the Birth to 3 Connections program. After that, the local school district takes over. The agencies provide information, training, evaluation services, consultations and family support groups for consumers.The earlier a diagnosis can be made, the better, in terms of getting assistance, Schmidt says. That also will help when it comes to integrating an autistic child into the classroom. "The earlier we can intervene, the better chance those youth will have in being successful with their learning," Muilenburg-Wilson says.Specialized early childhood classrooms, like the one Makenna McGaugh will attend, offer a much more structured, scheduled learning environment with a bigger focus on communication than regular early childhood classrooms - usually with fewer students, Muilenburg-Wilson says.

There are four of these classrooms in the district, says DeeAnn Konrad, community relations supervisor for the district. But it's not a one-size-fits-all educational approach. "Autism has a full continuum of abilities and needs within it. Each child presents very uniquely," she says. "As educators, we have to look at each child one at a time and plan each program around their needs. Many of those youth can be successful in classes. Others need more support."The district has invested in training to help teachers understand the strategies that will reach autistic students, Muilenburg-Wilson says. "We as a district have some staff who are specifically trained in autism so they can be leaders in training other staff. We've had to develop some specialized evaluation teams around autism."

In parents' shoes

Communication between teachers and parents is even more critical when it comes to autism. "For all children's learnings, it's important to have close communication between home and school," Muilenburg-Wilson says. "For children with autism, many of the strategies and individual skills need to happen across the environment, so it's important to have an increase in communication, so the children can carry over the skills they're learning to all environments."

The goal is to mainstream students whenever possible.Emotionally, autism can take its toll on parents.

"When families come into our clinic, we try really hard to be cognizant of where they are in the acceptance process or the discovery process," Schmidt says. "Some families have their head around the word 'autism.' Even though it's scary and not what they had in mind for their child's future, they're accepting of it. Other families who come in are either in denial or they just don't want it to be so."Even though the public is more aware of autism, there still is a stigma, says Stephanie Ollerich, whose 5-year-old daughter is autistic. "Nathalie will have a fit in the middle of a grocery store, and I will have parents look at me like, 'Why can't you control your child?' It's happened to me so many times, it doesn't phase me."Support groups help. Ollerich has been involved with a group of parents since her daughter was diagnosed. They still get together at least once a month.

"I really have to remind myself every day that she didn't ask to be this way," Ollerich says. "She didn't ask to have tantrums, to not understand. It's not her fault. It's difficult. So you learn patience. You learn to have lots of patience. It's my job not to just be a mother, but to be a teacher."McGaugh still is learning to navigate autism.

"I still have my good days and bad days. There's a neighbor girl who's six months younger than Makenna, and she'll come over and talk to me. That breaks my heart sometimes. My husband has a hard time accepting that she might never talk."But Makenna is such a happy, happy kid. Someday, my daughter may say something to me. If she does, she does. If she doesn't, she doesn't."