Autism is largely a mystery. There is much to be learned about the disorder, beginning with diagnosis. According to the website for Autism Speaks, “Presently, we don’t have a medical test that can diagnose autism.” Parents are often the first to notice the signs—such behaviors as playing with his or her toys in unusual or repetitive ways and not responding to his or her voice being called. Signs of autism are different at each stage. Infants smile and look at others less often, and toddlers often have less eye contact and seem unable to communicate in simple ways like pointing. Preschoolers have trouble in social situations and may spontaneously approach strangers.
Autism Speaks urges parents to “trust their instincts and find a doctor who will listen,” because “unfortunately, doctors unfamiliar with diagnosing autism sometimes dismiss parent concerns, delaying diagnosis and the opportunity for early intervention therapies.”
Because of the mysterious nature of autism, little is known about treatment or management. This can have drastic effects on the lives of children with autism and their caregivers. Last December, Benny Shoup, the 11-year-old son of Lesley Wyatt, had a bad reaction to a switch in his prescription. Benny, who must take medication to help him sleep, was taken off one medication and prescribed another.
“It seemed like he was going through withdrawal,” said Wyatt. “He went from being a normally friendly and social child to screaming for hours. He wouldn’t interact with anyone. He became anti-social.”
Even though Benny does not communicate verbally, he isn’t usually one to shy away from strangers. After three months of uncharacteristic fits, Benny’s regular doctors still couldn’t figure out what was wrong. Wyatt searched for a child psychologist, but was unable to find one in this area. The reaction was severe, with additional symptoms like uncontrollable shaking and tremors, so he was placed on a medicine for Parkinson’s.
“I spent a lot of time worrying, unsure of what to do,” Wyatt said. “It was so scary.”
Her initial assessment had been correct. In the end, they determined he had gone through withdrawal after quitting one medication cold-turkey.
In the beginning, Wyatt had tried not to medicate Benny, opting instead for natural and alternative methods, diets and therapies until he was four years old. When it became apparent that nothing was helping, doctors placed him on varying medicines in an attempt to find one or a combination that would work for him.
Because each child with autism is unique, management and treatment is different for every case. Intervention plans include behavioral management and therapeutic activities that focus on social skills, speech therapy for language and communication development, imitation and play skills, as well as daily living and motor skills.
“I drive up to Des Moines every three months for his appointments,” Wyatt said. “More often if we have problems.”
But Wyatt wants to make it clear that Benny is a blessing. Wyatt and Benny’s father both carried the recessive gene for short rib polydactyly syndrome, which usually results in a lethal type of dwarfism. Their oldest daughter, MacKenzie is now 14 and has no effects from either that syndrome or autism, so Wyatt was unaware of the genetic anomaly. However, when she was pregnant with her first son, Trey, Wyatt learned that he would be born with achondroplasia, a common cause of dwarfism. She was only seven and a half months along when preterm labor began. She rushed to the hospital, where her doctor conducted an ultrasound. Usually a happy time for any pregnant mother, her doctor measured Trey’s bones and informed her of the abnormality. She figured he might be a sick baby, with possible complications with his kidneys, heart and other internal organs, and would grow up as a little person. But she had no warning that he would die just nine hours after his birth.
The loss was devastating. With Wyatt’s husband enlisted in the military, they moved a few times and life became busy. Then, she found out she was pregnant with Benny. When he was born, Benny showed no signs of dwarfism, a huge relief to Wyatt. Benny’s father deployed to Iraq, but came home for leave. Wyatt became pregnant with twin girls.
That August, Benny was diagnosed with autism. In September, her baby girls died, two more victims of the genetic abnormality. Soon after, she found herself raising her two children alone.
But Wyatt does not want people to feel sorry for her. She tries to keep everything in perspective. She believes that all of the loss she’s endured has made her stronger.
“People think I’m crazy when I say this, but it has been the best life lesson,” she said. “You just take it and you figure something out. You have to make the best of what you’re given.”
She admits to having “pity parties” sometimes, but then she remembers there is always someone worse off than her. And on really bad days, she says, “We’ve been through worse. We’ve got this.”
Though Wyatt does receive respite care for Benny, where a care provider takes him out into the community for various activities, MacKenzie has been her mother’s biggest helper. She is also Benny’s biggest fan.
“In a lot of ways, Kenzie has had to grow up too fast. She’s stepped up and taken a very adult role. She plays with Benny, feeds him, and even changes his diapers.”
There are times when Wyatt wishes she could do more for her daughter.
“We can’t do some things, like take vacations, because Benny just can’t do a lot of stuff. But Kenzie doesn’t act like that bothers her,” Wyatt said. “In fact, she’s always doing little things to surprise me. Like when she said she wanted me and Tyler to go out on a date and she’d watch Ben. We only stayed out for two hours, but still. It was nice to have a date with my husband.”
Lesley wants people to know that autism can happen to anyone.
“It’s in your genetic make-up. You can’t see it before it happens.”
Indeed, the causes of autism are also unknown. Aside from genetics, researchers speculate about other factors ranging from chemicals to the environment. Because of worries that common childhood immunizations might cause autism, many parents have opted against recommended shots. This has resulted in outbreaks of diseases that had been controlled for decades. The debate concerning the correlation between vaccinations and autism continues.
In the constant swirl of confusion about autism, one thing is certain: no one understands what it’s really like to have autism. Unless they live with it every day.
“It’s a lonely life,” said Wyatt. “People don’t get it. If my child had cancer, I’d be able to call some support group. But because every kid with autism is different, no one can really tell me what to expect.”
For sure, the behavior aspects that result for autism can draw unwanted attention:
“I wish people wouldn’t stare or talk about him like he’s just some brat. He can’t help the way he acts and it doesn’t help when people say rude things. I just want to say, ‘There’s nothing to see here.’”
In her book, Ten Things Every Child with Autism Wishes You Knew, Ellen Notbohm addresses the public perception of children with autism. She lists off things they would say, if they could. Here are four from that list:
1. I am a child. My autism is part of who I am, not all of who I am. As an adult, you have control over how you define yourself. As a child, I am still unfolding.
2. My senses are out of sync. This means that ordinary sights, sounds, etc. that you may not even notice can be downright painful for me.
3. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear “*&^%$#@, Jordan. #$%^&^$%.” Instead, come over to me, get my attention and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.
4. Listen to all the ways I’m trying to communicate. It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.
Lesley Wyatt wishes she could tell everyone to remember these things and have compassion and understanding. “For the most part, the community has been good with Benny. But there have been times when we’ve been asked to leave a store. We get told we’re disrupting other customers.”
Wyatt said a lot of people say, “Some day they’ll be able to cure him.” But it isn’t really Benny that she’d like to change.
“Sure, I’d like to help him to communicate and be more independent so he could have a better, easier life. But what I’d really change is the public perception of him.”
Wyatt doesn’t like to ask for help, but some people have been there for her along the way. “Dave and Jennie Bethards, my respite providers, and Miss Susie [Street], Benny’s one-on-one at school, have been lifesavers.”
Then, there is Erin Schilling-Berentschot, who approached Wyatt about having a fundraising event for Benny and his family. On Nov. 2, there will be a craft fair and raffle, and all proceeds will go to Benny Shoup.
“We’re working on making the bathroom accessible for him. It’s really tough to bathe him, sometimes. His legs just go stiff, and we have to lug him out of the tub.”
For Wyatt and her family, the chaos of autism is the rhythm of their daily life.
“This is normal for us,” she said. “‘Special’ people are human, too. We don’t want anyone to pity us. We just want people to treat Benny like a normal boy.”