TRAVERSE CITY — Andrea Hentschel had a mother's hunch that something was wrong with her son about a year and a half after he was born.
"He was saying 'mama,' 'dada,' and then it disappeared," said Hentschel. "We would hear one word every two weeks if we were lucky. Then he started having bizarre behavior, like going into the bathroom and opening and shutting the door for 20 or 30 minutes at a time, and I couldn't redirect him."
That's when she first considered the "A word," Hentschel recalled -- a word no one else wanted to hear.
"The fact that he was affectionate and had fairly good eye contact and wasn't throwing blocks out the window made it harder for people to believe he might be autistic," she said, adding that everyone from her pediatrician to her husband to her father, a teacher, believed Alex was just a late bloomer.
Finally, at 3, Alex was diagnosed by the school system and placed in an early childhood program, which, in hindsight, should have been done earlier, Hentschel said.
"... The earlier the intervention the better the outlook," she said. "Six months in child development is like several years for an adult."
About 1 in 110 children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention, making ASDs more common than pediatric cancer and diabetes combined. And their prevalence is increasing for reasons that aren't well understood, though better awareness is thought to play a role.
ASDs are a group of neurodevelopment disorders that involve mild to severe problems with behavior, communication and socializing. They may or may not cause physical or cognitive impairments.
Although their cause is uncertain, scientists believe age, genetics and environmental factors are to blame. There is no "cure," but some studies suggest that with early diagnosis and appropriate intervention and treatment, as many as 50 percent of autistic children can recover typical function. Another 40 percent can make significant progress.
But because no two people are affected in exactly the same way, navigating the bumpy road that is autism can be harrowing.
In the beginning
Cari Noga and Mike Henderson are just beginning their journey. Their son, Owen, 5, was diagnosed with autism last April, National Autism Month.
Since then they've explored much of the conventional treatment, from speech and occupational therapy for help with communication and sensory issues, to behavioral therapy for help with specific behaviors. They've even tried less conventional therapy like gymnastics.
"The jury is out on whether it's helpful or not," said Noga, a part-time writer in the Northwestern Michigan College public relations department. "A lot of autism treatment seems to be throwing something at a wall and seeing what sticks. And it all costs money. It'd be so much easier if there were definitive answers."
Although the couple has seen progress, Noga said it's unpredictable, like autism itself. Skills and behaviors seem to appear, disappear and reappear in no apparent pattern.
"It's not linear, like you can rely on a particular trajectory. And that complicates things," she said. "We have signs of encouragement, and we think we're going to continue on this track, you're getting better -- or you're not -- but it's all over the place."
On top of that, Noga struggles with the difficult balancing act of parenting autistic and "neurotypical" children at the same time. Daughter Audrey is 2.
"You have to try to divide yourself up," Noga said, "and then there's all the time and effort and money we're spending disproportionately on Owen. I feel perpetually falling short despite my best efforts."
She recalls one day when Owen, who attends Traverse Heights Elementary's early childhood program, couldn't be engaged in anything. So Noga went outside to help Audrey ride her bike on the driveway while Owen looked on from the window.
"There's a huge amount of guilt," she said. "In the winter he seemed to lose interest in everything he loved. He didn't want to do anything. Meanwhile Audrey is embracing everything. She wants to go places, she wants to do things. So somebody's going to be unhappy."
More often than not, Noga said, that someone is Audrey.
"If I grant Audrey's wishes I'm going to get more pushback from Owen. With Owen I'll get fights, sitting in the car. It doesn't seem worth it. So Audrey gets denied unfairly it seems."
Noga said she's learning to give herself a break and to take joy in the small things, like the time Owen took the initiative and asked Audrey to play. Or the time he demonstrated empathy -- characteristically lacking in autistic children -- by asking if Audrey was OK after a fall.
"They're so few and far between, these glimmers of hope," Noga said. "Every once in a while he'll come out with this gem and, especially if you've had trouble with teachers, you want to say, 'Look. See, he can do it.'"
Four years and counting
Now "mainstreamed," Alex Hentschel is a first-grader at Courtade Elementary, where he has a one-on-one aide he depends on less and less. He also gets twice-weekly private tutoring from a psychologist with behavioral-therapy training.
"That seems to be enough outside intervention for now," said mom Andrea Hentschel, a graduate student at Central Michigan University and a consultant for nonprofits. "You have to decide what's best for your family, and if you have other kids you have to meet their needs too."
Although his reading and writing skills are high and he's good at printing and drawing, Hentschel said communication remains Alex's biggest challenge.
"He's 7, and he probably communicates at the level of a 3-year-old," she said. "He doesn't always understand when people are talking to him, when he's supposed to respond. He doesn't understand inflections in the voice. You can't say, 'Where did it go?' even though you were talking about 'it' five seconds ago."
Alex's social skills have improved to the point that he's comfortable asking classmates for help. But he needs to isolate himself in his room for a time right after coming home and doesn't like anyone to invade his space. He likes his little brother but only "in small doses."
"He did not like little kids," Hentschel recalled. "They would come up and take his toys. He didn't know what to do. It was like they were invading his world. Getting into a little bit older peer set, it's wonderful."
Still, life with autism has its ups and downs, she said, especially when it comes to the outside world.
"We are the parents that everyone dreads in a store because he's screaming. Everyone in the place is telling you about your parenting, and it may not have anything to do with anything except that the florescent lights hurt his eyes or there's a smell he's sensitive to.
"A lot of people don't understand it, and they have a hands-off attitude because they don't have any training," she said. "I think we need more awareness and a bigger support structure for parents and more training for professionals like police, firemen, health providers. It's a horrible feeling to go to urgent care and tell them my son is autistic; if you keep him waiting much longer he's going to have a fit."
Hentschel is doing her part to help "educate and advocate" for the time when her son will be alone.
"He's going to have to live in this world when we're not," she said. "We have to build a community around him that will embrace him because when we're gone his world will fall apart."
Meanwhile, she said, Alex and his disability keep "a lot of things in perspective for us.
"It causes difficulty, and it causes stress, but it's not something I would trade," she said. "Everybody's going to have something in their lives."
Kelli Stapleton may be older and wiser, but daughter Issy is heavier. And since Issy, 11, sometimes acts out in violent ways, Stapleton often fears for her own safety.
"She hits me a lot," said Stapleton, who has suffered bruises, swollen eyes, sprained and broken fingers, and even a closed head injury after being knocked unconscious. "She is now much larger than me and has no understanding of the damage she does. There doesn't seem to be a way to stop her. Nor is there anyone who can help us. We've tried."
A fifth-grader at Frankfort Elementary, where she has a one-on-one aide, Issy does well in school. She has friends and is well-known and loved in the community.
But Stapleton worries that Issy might someday kill her and that it could happen in front of her two other children. She also worries about what will happen to Issy then.
"Issy will have nowhere to go. We don't have a facility in the state. We have an absence of any place for intervention," she said.
Meanwhile the family copes as best as they can, enjoying time together at open mic nights at the Cabbage Shed and at the beach in the summer. Stapleton knows she can be a trigger for some of her daughter's aggression, so she tries to stay away from her unless she's calm.
Because of Issy's extreme behavior, she has a Medicaid-funded life coach to help before and after school. It's a fact that makes Stapleton feel guilty even as she's grateful.
"Yes, we have it bad," said Stapleton, producer and host of "Birth Stories on Demand," an Internet radio show about childbirth, and the author of the "Birth Stories on Demand Presents" series of books. "But there are parents out there who have it worse. She's not self-injurious, I'm not a single mom, she could be really low-functioning. She has this one extreme behavior where she hits me. Fix the hitting, and my problem will go away.
"I feel bad for her. She only gets this one life, and it isn't fair."