When Dan Guile’s son, Jeffrey, was born nine years ago, the young dad had dreams of participating in stereotypical father-son activities – playing football, going fishing and taking his son hunting. A diagnosis of autism when Jeffrey was barely 1-and-a-half changed all that.
“I was crushed,” explains the Murfreesboro father. “When you hear something like that, you feel like dreams are all taken away from you. I went through every negative emotion there was. I went through fear, anger, sadness. I felt bad for Jeffrey and bad for myself. Every negative emotion you can name, I felt.”
“I was devastated,” his wife, Kristie, nods.
For the first 15 months of Jeffrey’s life, he was like any other child. He reached all the developmental milestones at the appropriate age. He enjoyed playing peek-a-boo with his parents, and he could sing “Ring Around the Rosie.”
Shortly after 15 months, however, Jeffrey slowly stopped using any words and stopped role-game playing, too.
“Between 16 months and 2 years of age, Jeffrey had much more autistic tendencies,” his mom says. “He would start to spin in circles and do a lot of hand flapping,” she says.
Signs of Autism
According to the National Institute of Mental Health (NIMH), many parents of autistic children begin to notice a developmental delay in their children between 12 and 36 months of age. These children can lose language and social skills they had previously acquired; they may begin to reject other people and start behaving in unusual ways.
Other autistic children may have symptoms apparent from birth. Spring Hill mom April Schmidt experienced this with her youngest son, Luke.
“He was screaming pretty much 24/7 from the minute we brought him home from the hospital. I had a sense that he wasn’t comfortable. Nothing made him happy,” Schmidt says. “We kept thinking it was colic, and he would out grow it. Then we blamed it on teething … I mentioned some of my concerns to my pediatrician, but he sort of ignored me, brushed it off, and said, “Oh, he’ll catch up, he’ll catch up.”
Both the NIMH and Autism Speaks, a national organization dedicated to increasing awareness for autism spectrum disorders (ASD), say this response is typical from pediatricians. They often tell parents to “wait and see.”
When Luke was 18 months old, Schmidt decided to take action. “That was when my internal alarm clock went off. I said, “OK, I’m done listening to the pediatrician; I’m done waiting for the him to tell me to do something about this,'” she says.
Luke was originally diagnosed with early childhood development delay (ECDD) – a catch-all used when a child demonstrates developmental delays but is too young to be officially diagnosed with a specific disability.
After reading a magazine article about autism, Schmidt researched the disorder in detail and realized that her son had it, even though therapists and professionals kept denying the fact.
“The day we got the official diagnosis of autism was actually a relief because I felt that we could then tackle the problem. I know this sounds weird, but … I knew all along,” Schmidt says. “It’s not a death sentence. There is potential for healing and improving.”
What Causes Autism?
Even though autism is one of the fastest growing developmental disabilities in the nation, researchers are still uncertain what exactly causes it.
The Autism Society of America says that some children may be born with a susceptibility to autism, but researchers have yet to identify a single trigger.
Researchers at the Vanderbilt Kennedy Center in Nashville argue that up to 20 – 30 sets of genes may play in the development of ASDs, but scientists continue to look for possible environmental and other triggers.
“We know autism is a neurological-biological disorder, so it’s brain-based,” explains Nicolette Brigham, Ph.D., of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD). “Research would suggest that there are genetic components, but there could be other components that play into this; the environment being one,” she adds. “So do we know for sure if it’s genetics or if it’s a certain chromosome? We’re not to that point yet – unfortunately – which is why research is so important, so we can try to determine what is causing it but also how to treat it as well.”
Brigham adds there is an increased risk of autism for siblings. According to the Centers for Disease Control, parents who have a child with an ASD have a two to eight percent increased risk of having a second child with ASD.
At TRIAD, one of the research programs focuses on infants with an older sibling with ASD by studying the infant’s social and communication development. The researchers hope this will be used to design methods of early intervention and prevention.
Life with Autism’s Reality
Living with autism can be challenging and rewarding at the same time. Schmidt cites the unpredictable aspect as the hardest part.
“I never know what I am going to get from one day to the next. One day, Fritos might be Luke’s favorite food, the next, it might make him scream if I offer them to him,” she explains. “It’s like being the parent of a ticking time bomb; you never know when he’s going to blow,” she adds.
“We’re fortunate that Jeffrey is verbal, but it’s not normal back-and-forth speech all the time,” says Kristie Guile. “The biggest problem is true communication. If Jeffrey gets frustrated, he can’t say, â€˜Hey, I’m mad,'” she explains. “On the upside, there’s not a single day that Jeffrey doesn’t make us laugh. He’s very, very happy, probably one of the happiest kids I’ve ever seen.”
“What he taught me is how selfish I am, and how we all can be,” Dan Guile, remembering his initial sadness from the autism diagnosis. “I wondered if he could ever be happy if he’s autistic. But it’s a pure form of happiness,” he adds.
The financial responsibility of autism can be great. The Schmidts spend $1,000 a month for Luke’s supplements, extra therapy and special food.
Both Luke and Jeffrey face difficulty with food; both have limited diets due to sensory issues. The only fruit Jeffrey will eat is bananas; he eats virtually no meats but loves junk food – salty snacks, cookies, ice cream and pizza. Luke also eats no meats or vegetables. He eats chicken nuggets, gluten-free french fries, veggie and potato chips.
This diet may seem unhealthy, Schmidt admits. “In our particular circumstance, if he’ll eat it, we give it to him. We struggle so much for him to eat. We want him to gain weight,” she says.
Luke is on a gluten-casein free diet, which many autistic families believe in and which eliminates all wheat and dairy from the diet. His mom says she’s seen vast improvements in Luke’s digestion although still no weight gain. The gluten-casein free diet does not work for all autistic children.
“There are some families that swear by the gluten-free diet. We found that it does not impact Jeffrey’s autism one way or the other,” Dan says. “Every child is unique. When a child is diagnosed with autism, that’s the start of the challenge. You have to work to find out where that child falls on the spectrum, what that child responds to and start moving in that direction.”
Because autism is considered a spectrum disorder, one child may have mild symptoms and others more serious ones. Some are verbal, others are not.
Early Intervention is Key
“I really feel that Jeffrey’s progress has been because we didn’t delay,” Kristie says. “We didn’t want to wait until he was 2 or 3 and have all that time go by without the wonderful therapy he received during that time frame.”
Brigham concurs. “Early intervention is critical,” she says. “The earlier we can get in and start working, looking at where the child is demonstrating some challenges, and trying to address those challenges through intervention, the better off the child will be in the long run,” she adds.
Dan urges parents to go with their gut feelings. “It goes back to advocacy. We had pediatricians tell us nothing was wrong, but in the end, we went with our gut,” he says.
Because of the intensive therapy that 5-year-old Luke received after his initial diagnosis of ECDD, he has made remarkable improvement.
“It’s like with any developmental disability. You can’t necessarily say that they’re never going to do this, they’re never going to do that. Sometimes children can be capable of a lot of things,” says Brigham. “Again, the whole point is to go in there with early intervention and maximize each child’s potential.”
At 9 years old, Jeffrey has come a long way. He is highly functioning, verbal, interacts with the kids in his class and plays with neighborhood kids. He loves playing on the computer and can even create his own screen savers.
Luke has made improvements, too.
“About a year-and-a-half ago, Luke had maybe 20 words, and now he speaks in sentences, and he initiates conversations,” says his mom, April.
“I took him to McDonald’s Play Place recently, and he actually walked up to a child and said, ‘What’s your name? My name is Luke.’ For him to reach out that way was a huge milestone – huge! Something that parents of typically developing children completely take for granted, and it took my son five years to be able to do it,” she says.
Brigham says each child’s individual future outcome depends on the support they receive and where they fall on the spectrum.
“There are some individuals with autism that live in group homes later in life,” Brigham says. “And then there are other individuals on the spectrum that can have jobs and get married.”
Doan Phuong Nguyen is a frequent contributor to this publication. She lives in Nashville.
Vaccines: Is thimerosal to blame for autism?
Some parents still believe that certain childhood vaccines with the mercury-containing preservative thimerosal in them are to blame for autism in children.
It’s a loaded issue for parents whose children have autism. Yet:
- The Intstitute of Medicine spent four years on studying the subject and in 2004 concluded that mercury preservatives in vaccines did NOT cause autism. The Institute said it was time to move on to look at other possible causes. Several other leading medical organizations (both nationally and internationally) agree with this conclusion.
- Thimerosal was removed from vaccines in the U.S. in 2001. Autism continues to sky rocket.
- To read more on autism, a good starting place is The American Academy of Pediatrics online at aap.org.