The faces of autism look no different than those without it. So when Hermie Sadler poses for a picture with his daughters (from L to R) Naomi, Cora and Halie, it's impossible to tell that Halie is autistic. (Courtesy of Hermie and Angie Sadler)
It was almost seven years ago when I wrote a story about giving a little boy a chance. The boy was my adopted nephew R.E., who was the child my brother and sister-in-law couldn't have on their own.
Adoption, as you may know, doesn't happen quickly, if at all, so we considered it a blessing when R.E. came into our lives. Nearly seven years later, we still do, even if R.E. isn't going to grow up to be like Eric Dickerson or Jim Palmer – Hall of Fame athletes who, like R.E., were adopted.
You see, R.E., which stands for Robert Evan, is autistic. For him, little things like smiles come easy; other little things like having a conversation don't.
He goes to school like other 6-year-olds, rides the same bus, can say his ABCs, loves Lightning McQueen. But he's not potty trained, he'll never drive a car, and he'll probably never live on his own.
"He is our miracle kid, because he is the person who has opened our eyes to being patient," my brother Evan said the other day. "But it's a lot of work."
That's a common theme when it comes to autism, which has become all too prevalent.
According to the Centers for Disease Control and Prevention, autism impacts 1 in every 150 American children and almost 1 in 94 boys, making it more common than pediatric cancer, diabetes and AIDS – combined. There is no known cause – a recent study released Wednesday showed a possible genetic link to autism – and no known cure. In fact, there isn't a lot known about autism, which makes it scary and frustrating, and why with April being Autism Awareness Month it's so important for those who live with it every day to spread the word.
"Our part is to create awareness," said NASCAR driver Elliott Sadler, whose niece, Halie, is autistic. "It's not to tell you how to deal with it. It's not to dwell on how bad it could be for us, but how good it can get."
Sadler is one of a handful of professional athletes who have been touched by autism. Fellow Sprint Cup driver Jamie McMurray also has a niece afflicted with autism. Former NFL quarterback Doug Flutie's son is autistic, as is golfer Ernie Els's son.
To help raise awareness and much-needed funds to help families with the cost – the lifetime cost to care for an autistic child is between $3.5 million to $5 million, according to the Autism Society of America (ASA) – Sadler and his brother Hermie, Halie's father and a former NASCAR driver himself, have established a foundation which has raised and donated more than $500,000 for out-of-school programs for those who can't afford necessary care.
Beginning Thursday, Elliott Sadler will be auctioning off a race-worn helmet. All proceeds raised in this auction will go to the Hermie & Elliott Sadler Foundation.
Beginning Thursday, Elliott Sadler will auction off a race-worn helmet, with all proceeds going to help families raising autistic children.
(Courtesy of the Sadler Foundation)
When Halie Dru Sadler was diagnosed eight years ago, her parents didn't know what autism was. That's not unusual when you consider there is no clear-cut definition of what autism actually is.
Its definition according to the ASA is "a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills." But exactly how that definition translates into real life varies from person to person.
When Halie was younger, she would beat her head on the kitchen floor until she bled. She did it out of frustration because she couldn't communicate with others.
"She was trying to get us to understand something or to do something and we couldn't figure it out," explained Hermie Sadler, who competed in NASCAR for a dozen seasons.
Thanks to early intervention – Halie, now 10, was diagnosed when she was 2½ – she's gone from being non-verbal and extremely shy to a "social butterfly." But it took years of work, a ton of sacrifice and a lot of money.
Because the Sadlers didn't feel the local school system in Emporia, Va., was equipped to give Halie the attention she needed, they enrolled her at the Faison School for Autism in Richmond, Va. For three and a half years, five days a week, Angie Sadler and her daughter made the 160-mile commute to and from school. While Halie was in class, Angie waited, then drove them home every afternoon.
It's a sacrifice the Sadlers were willing and able to make. But at $60,000 a year, not everyone is so lucky to have the means to send their child to a school like Faison. Many have to rely on public school systems, which have a difficult time meeting the individualized needs autism demands.
"Each individual kid is so unique and so different on the autism spectrum, there isn't one program that works for all of them," explained Becky Geisler, a special education instructor in Guadalupe, Calif. "I have four autistic students in my room [in a class of 11]. Some are a lot more congenially aware than the lower-functioning kids. It varies. Each one varies, which is why it's so hard."
While Halie is a social butterfly, my nephew R.E. doesn't seem to be concerned with communication. He's content doing his own thing, which doesn't always fit in with the "norm." He'd push pool balls across a pool table for hours if you let him. That's the harmless part.
R.E., now six, was diagnosed with autism when he was three.
But if left to his own devices, he'd put on a diaper and roam about the house fiddling with anything he can find, which for him means opening and closing his Nintendo DS or turning the TV on and off or accidentally breaking something, which happens often.
"You turn your head for two seconds and something happens," my brother said, at which point he had to get off the phone because something happened.
And if you're out at a restaurant and he doesn't want to be there anymore, look out, because he will throw a fit that's difficult to stop. R.E. and Halie have this in common.
"There are times when I just want to reach inside R.E. and help him, but I can't," my brother said, "and it's one of the most frustrating things in this world."
This is the ugly side of autism, the side that either brings families together or tears them apart.
Because there is no off button when it comes to autism, a family's life revolves around that child. Husbands and wives have very little, if any, time to themselves. Siblings' needs become secondary. Grandparents are called in to help. So are aunts and uncles. But the relief lasts only a few hours, then it's back on again.
"Nobody understands what an autistic family goes through," my brother said. "It's hell. Some days you want to get up and walk away. But you know what? You can't. It's your kid."
Some statistics put the divorce rate of couples with an autistic child at 80 percent, though an informal poll done by the National Autism Association put the number much lower. Regardless, there's little doubt that autism puts a strain on a marriage.
"We've been married 14 years and we're still strong in some ways because of Halie's situation, but it is a daily grind," Hermie Sadler said. "We don't have a lot of time for us to do the things you like to do with your wife or your girlfriend.
"And it's also a strain on the other kids, because my oldest child, she doesn't get to do a lot of the stuff a lot of kids her age are getting to do because we need her to be a role model and we ask her a lot of times if she does stuff to include Halie with her because we want Halie to be involved with the other kids."
And when Halie grows up, what then? Same for R.E. and the other 1.5 million Americans living with autism. Will they ever go on a date? Will they finish school? Will they be able to live alone?
"All those things that you take for granted with kids, we just have a different set of things that concern us about Halie," Hermie Sadler said. "That being said, I've said this 100 times, she has taught us as much or more than we've taught her."
A miracle, a menace – that's autism.