Imagine that you’ve been planning a trip to Italy for a long time. You’ve read guidebooks, learned a little of the language, soaked up the culture. The time finally comes and you make the long flight to a foreign country. But when you get off the plane, it doesn’t look at all like Italy – and you hear a voice saying, “Welcome to Holland!”
Holland!? This isn’t where you planned to go. You want to get back on the plane and go to Italy.
But Holland is where you are, and as you look around you notice that it’s a nice place, too. It has pretty flowers. The people are friendly. It’s not Italy, but it’s OK.
“That’s what you feel like when you discover your child has autism,” explains Charlene Hubbard, a single mom living in Nashville. “You have to completely change your thoughts on parenting. You realize it’s not what you expected, but it can still be a wonderful experience.”
Hubbard has been to both “Italy” and “Holland.” Her firstborn son is a typically developing preteen, while her 9-year-old son, Dusty, has the life-long, neurobiological condition that significantly affects how a person perceives the world, interacts with other people and communicates.
One Out of Every Five
According to the Autism Society of Middle Tennessee (ASMT), autism is a “spectrum disorder,” meaning that the symptoms and characteristics can present themselves in a wide variety of combinations, from mild to severe. It is one of a group of disorders that fall under the broad heading of Pervasive Developmental Disorder, or PDD.
Dusty, like a percentage of other children with autism, is also mentally challenged. On the other hand, Matthew Copaus, whose art is featured in this issue (page 63), is a bright 11-year-old who is a published author and illustrator. And 5-year-old Anna Winter of Franklin is severely developmentally delayed at this point, has almost no verbal skills, but is making great progress with a variety of therapies and a specially structured preschool environment.
Generally, children with autism develop language very slowly or not at all, and their speech may be difficult to understand. They often do not respond to social cues such as eye contact or smiles, and show little interest in making friends or interacting with others. Many have an impairment that makes them extra or less sensitive to their sense of touch and hearing. In play, children with autism may lack spontaneity or imagination and often do not imitate others’ actions.
Autistic behaviors include obsessive interest in a single object, activity or person; repetitive motion; throwing tantrums for no apparent reason; and difficulty with changes in routine, among others.
Statistics from the Centers for Disease Control and Prevention (CDC) indicate that in 2001, autism occurred in about one out of every 500 individuals. Some experts say that the number may be as high as one in 250 when Asperger’s Syndrome, a milder form of autism, is included. The disorder is four times more prevalent in boys than in girls.
There is no known cause for autism, although there does seem to be a genetic link. Environmental pollutants are also under investigation as a possible cause or trigger in susceptible individuals, but there is no conclusive evidence to date. And because autism is a condition in which the brain processes information in an atypical manner, rather than a disease, there is no cure.
However, early diagnosis and intervention can dramatically improve the outcome of a child with autism. To help with communication – the delay of which is often one of the first clues a parent has that something may be wrong – speech/language therapy is usually started immediately after diagnosis. Occupational, art and music therapy; special diets and supplementation; medications; special education services; and other interventions may all be used at some point.
Detecting a Problem
One of the frustrations parents often experience is the difficulty in diagnosing autism. Melinda and Scott Winter of Franklin, parents of Anna and her typically developing older sister Jessica, still fight back the tears when remembering their struggle to find out why Anna didn’t talk.
“At first we thought we had the perfect child,” says her mother. “She slept all the time and hardly ever cried. It took another person saying something before we realized something was wrong.
“Not long after I’d started taking Anna to Mother’s Day Out, a teacher said she thought Anna had a hearing problem.” The teacher dropped a book behind the toddler and Anna showed no reaction. “Then I called her name and she didn’t even turn her head,” Winter says.
A hearing test was normal, but Anna’s parents noticed that she didn’t respond to them or her older sister. “There was no eye contact, no interaction, no language,” Winter remembers. “We knew there was something very wrong.”
Anna’s pediatrician dismissed their concerns at first, but at their insistence finally helped them get more testing. Winter says, “It took six hours of all kinds of tests, but at the end of the day they gave us a diagnosis of mild to moderate autism. She was 32 months old.”
It wasn’t long before they discovered that Anna also had food allergies that affected her behavior and learning ability, a common occurrence among people with autism. Winter discussed diet and exchanged recipes with other moms at their children’s group speech therapy sessions at Vanderbilt’s Bill Wilkerson Speech and Hearing Center. “Getting wheat and milk out of her diet made a night and day difference,” she notes, “but it’s hard on the rest of us. We have ‘our food’ and ‘Anna food.'”
A child with autism affects the whole family. “It’s never ‘normal’ at our house,” Winter laughs. “It’s always exciting. But it’s also stressful because everything is all about Anna. We don’t use the term ‘special needs’ because Jessica interprets that to mean that Anna is special and she isn’t.”
The developmental delay often experienced by children with autism also poses unique challenges to their families. “I can’t leave Anna alone in a room, or she’ll end up finger painting on the walls with applesauce or take all her clothes off,” Winter says. “She looks like a 5-year-old, but developmentally she’s about 18 months old.”
Charlene Hubbard, Dusty’s mom, says it’s a huge challenge to find a babysitter for her son, who also cannot be left alone in a room. “It has to be a special person who knows something about autism,” she notes. “Dusty has no perception of danger, so someone has to watch him every minute.”
Education in the public school system is another challenge faced by families of children with autism. Just like typically developing children, those with autism have different strengths, interests, deficits, learning styles and needs. Some function well in a regular classroom with assistance; others need to be in a special classroom for part or all of the day. In more severe cases, parents and educators focus more on learning life skills and self-care than academics.
“Just getting Dusty dressed and on the bus is challenging,” Hubbard explains, “and that’s just the beginning of the day.”
Melinda Winter says getting Anna ready for preschool takes the entire family at least an hour every morning. “(Her sister) Jessica sings to her to calm her down while I get her dressed and Scott (Anna’s dad) fixes breakfast.”
Rita Copaus of Murfreesboro has sidestepped the public education issue by homeschooling her two sons. Her typically developing younger son, Christian, is 7 and in the second grade, while Matthew, who has autism, is in fifth grade.
The former kindergarten teacher began homeschooling six years ago, just after Matthew was diagnosed at age 5. “Back then nobody was homeschooling special needs kids,” she says. “I just took a leap of faith and said I’d take it one year at a time.
“Kids with autism learn best with lots of visuals and manipulatives,” Copaus explains, “but that also makes it more fun for any child. We take lots of field trips and the boys use their new skills in the real world. For instance, we might write a letter, then count out money to buy a stamp and then go mail it at the Post Office.”
She says she was very structured when she first started homeschooling, and Matthew would “just fall apart if his schedule wasn’t adhered to.” Then she decided to keep changing the routine so he wouldn’t get rigid. “Now, if we tell him ahead of time what to expect, he does OK with that.”
Communication is still the biggest challenge in the Copaus family. Even with intense speech/language therapy, Matthew has problems focusing, listening, answering questions and following directions. “But it’s not a huge problem,” Copaus notes, “and we’ve developed strategies to deal with it.”
She says it’s helped that Matthew has been able to convey why and how different things affected him as he progressed with his communication skills. “When he was younger, it was torture for him to have his teeth and hair brushed. We didn’t know why until he was able to tell us that it was very painful because of his hypersensitivity to touch,” she explains.
Copaus and her husband, Marvin, try to find and focus on all the unique and special abilities each of their children has. “Christian is an excellent swimmer and is very creative. Matthew is a talented illustrator and author, and will soon have a story published in a monthly magazine about children with special needs. And now that they’re getting older, we try to spend some special one-on-one time with each of them, too.”
Charlene Hubbard notes that the general community can learn a lot from families who have a child with autism. “We tend to take life for granted when we hurry through it, but this really slows you down and makes you appreciate all the little things. Don’t take anything for granted with your child,” she says. “Find the unique qualities in each one and enjoy your children for the gifts that they are.”
That’s good advice for any parent.
Nancy W. Brown is the mother of two unique children, as well as a freelance writer. She and her family live in Bellevue.