Misconceptions about raising children with autism.
April 2 marks World Autism Awareness Day. Nationally, autism affects approximately one out of every 110 children born today and government statistics suggest the prevalence rate is increasing 10–17 percent annually.
In the Fox Valley region, there are several families who are living with autism. Three of these families share their very personal experiences with raising their children with autism and the misconceptions behind the disorder.
According to the Autism Society of the Fox Valley’s (ASFV) website, autism is a treatable, lifelong, neurological disorder that significantly affects how a person perceives the world, interacts with other people and communicates. “It affects three things: behavior, social interaction and communication,” says Neenah resident Hallie Shopbell, mother to a child with autism and president of the ASFV, a non-profit organization who provides information and programs to support people with autism in the community.
Psychologists, psychiatrists, developmental pediatricians and school psychologists diagnose autism based on clinical observation and professional testing. “A pediatrician or someone from the school will usually refer the child to our program,” says Suzanne Schultz, lead therapist and Ph.D. candidate for the Fox Valley Autism Treatment Program (FVATP).
Since its inception in 1998, the agency has served hundreds of families in the Fox Valley region. “We help manage the symptoms of autism so the child can function better as a member of their family, as a student in their classroom and as a member of the community,” says Schultz.
Programs like FVATP use behavioral approaches to work on decreasing symptoms, while other therapies such as occupational therapy work on writing and sensory defensiveness as well as social and living skills.
“Most people don’t realize that it takes 250 steps to take a shower,” says Schultz. “We break down each step so the child does not get overwhelmed and can complete the task.”
Commonly referred to as ASD, which stands for autism spectrum disorder, children who are medically diagnosed are placed “on the spectrum” based on symptoms and characteristics that can present themselves in a wide variety of combinations, from mild to severe.
Children who are diagnosed through educational assessments are often given Individual Education Plans, or IEPs, and supported by professionals within their school district. “Parents are sometimes not aware of the services available to them through the school district,” says Shopbell.
There are several outdated theories behind the cause of autism but there is no single cause. In many families, there appears to be a pattern of autism or related disabilities, which suggests there is a genetic basis to the disorder, although no single gene has been directly linked to autism.
All children with autism are cognitively delayed
“Some believe that children with autism do not have emotions and cannot get attached to people,” says Shopbell. “And that is simply not true.” She and her husband have two sons, four-year-old Sam and six-year-old Eli, who was medically diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), a form of autism, at the age of two.
Believe it or not, many believe the vast majority of people with autism are savants, like the character portrayed by Dustin Hoffman in the 1988 film, Rainman.
Disorders like autism are the result of neurological problems that affect certain areas of the brain making it hard for those who have it to communicate with others and relate to the outside world. These problems include lack of speech; unawareness of various physical stimuli, such as pain; limited understanding; and responsiveness to social cues, such as eye contact or smiles, aggression towards others or self, or resistance to changes in routine.
In many cases, a child with autism is cognitively able to do the same things as a neuro-typical child but struggle with the communication and social parts of life. They feel offended when strangers speak slowly or treat them in a manner that is degrading or disrespectful.
Since their son’s diagnosis, the Shopbells have done speech and occupational therapy with Eli. They have used additional resources, such as football camps and Monkey Joes in Appleton, sponsored by ASFV, horse therapy through Beaming, Inc., and community-sponsored events such as Empower Me! Camp and Camp Hope.
Eli is currently a first grader at Coolidge School in Neenah. For most high-functioning children with autism, the school environment can give them the social interaction they need.
“It is hard for me to remember all of the struggles because our son has come so far,” says Hallie. “We have gone from sign language to speaking and we typically don’t have meltdowns anymore.”
A child with autism is the result of poor parenting
Many parents experience harsh looks and comments in public places as they are trying to deal with their autistic child’s behavior. “Because most high-functioning children with autism do not visually appear any different than neuro-typical children, it is often hard to distinguish until something triggers a meltdown,” says Tiffany Niederwerfer, mom to Evan, a five-year-old with autism. Tiffany and her husband recently relocated Madison, but raised Evan in Appleton prior to the move.
Because the disorder is sensory and not cognitive, things that a neuro-typical person does not recognize affect an autistic person. For example, a shopping trip can quickly become overwhelming because of the humming of fluorescent lights or squeaking of shopping carts. “It is not that these children are spoiled, it is that their neurons are not processing the environment,” Niederwerfer explains.
People with autism can respond by stimming, a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stims include hand flapping, rocking or repeating phrases. Others respond by suddenly running away, which can be very frightening for parents in a public place. “If you see a parent struggling with a child, you don’t have to say anything,” says Niederwerfer. “But a friendly, compassionate smile goes a long way.”
Parents of a child with autism are searching for a cure
According to the organization Autism Speaks, autism is four times more prevalent in boys than in girls and current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.
Melissa and Kevin Krull, Menasha, have three children that include nine-year-old, Kaeden, and seven-year-old, Kolton, who are both autistic.
“When we were told by Kaeden’s teacher that they were going to do an autism evaluation, we were stunned and even a little offended,” Melissa remembers.
The answer to treating the disorder is early diagnosis, intervention and a system of support. However, this process is often a stressful and turbulent time for the child, parents and caregivers.
Through trial and error and recommendations, the Krulls have discovered things that make living with autism easier, like exactly what type of cheese Kaeden will eat on his sandwich and to remove the tags from all of his clothes so it doesn’t bother him at school.
Before family gatherings and other social situations, the Krulls have learned that Kolton benefits from body brushing, a technique that replicates movements and stimulates the immature primitive reflexes and calms and soothes the nervous system.
Many families seek the emotional support of others who are living with autism. Over the years, the Krulls have done a lot of research online and attended presentations hosted by the ASFV.
“I don’t want a cure,” says Melissa. “My husband and I are not looking to fix our kids, we just wish that we wouldn’t be judged.” She adds that she doesn’t want others to feel sorry for her because she feels that having a child with autism has brought good things into their lives, too. “My husband and I have learned to work together,” she says. “We compare schedules before planning activities or running an errand.”
Melissa is also studying to be a special education teacher so that she can give back to other families. “I don’t want others to feel as lost as we did,” she adds. “I feel like I have found my purpose in life.”
The Autism Speaks website estimates that 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Chances are that someone you know is currently raising a child with autism. This month, take the opportunity to lend a helping hand or a give a friendly smile.
“If you see someone having trouble, offer to carry grocery bags or open the door,” said Schultz. “Or simply ask if the parent or caregiver needs help.”
Autism Support Groups
Autism Society of the Fox Valley: This non-profit was established in 1989 with a mission to provide information and referral, advocacy, public awareness, education and support for individuals, families, professionals and others who support people with autism. A family membership is $25 and includes access monthly outings to Monkey Joe’s, Appleton, teen events and a parent support group meeting as well as quarterly presentations and annual events including a Bob Burns Golf Clinic and a football camp with Xavier High School, which is free to families affected by autism within the state of Wisconsin. The Appleton Public Library offers a story time for a child with autism and Marcus Movie Theatres offers Reel Movies for Real Needs where theater lights and sound are adjusted. More information can be found at: www.focol.org/asfv
Friends of Autism: This non-profit, grassroots organization, was established in 2000 by John & Karen Sauer. The group has contributed more than $300,000 to research, awareness, and education for autism since 2000. The Friends of Autism Grant Program (FOAGP) is designed to support families of children and adults with autism or ASD by providing funding assistance for extraordinary expenses resulting from, or attributable to, autism.
—By Dana Baumgart