Shelly Grabe still remembers the day her youngest son lied for the first time. While most parents would have reprimanded the behavior, she couldn’t have been happier.

For Grabe and other parents of children diagnosed with an autism spectrum disorder (ASD), social norms like lying and cursing — acts considered reproachable by most parents’ standards — actually become moments of joy.

“The first time your kid lies you celebrate it, because they’re so honest,” she says. “To come up with a lie requires imagination, which a lot of our kids are lacking.”

These moments of engagement give hope to parents like Grabe — hope that their child will eventually learn to break through the socially isolating barriers that define the autism spectrum disorders. Lack of social capacity is just one of many symptoms of autism, a behavioral and developmental impairment characterized by difficulties in social interaction, learning, attention, sensory processing and cognitive functioning.

ASDs do not discriminate by race, ethnicity or socioeconomic group, though boys are four to five times more likely than girls to be diagnosed, according to data from the Centers of Disease Control and Prevention.

In large part, autism remains an open-ended question. Even with the surge in research in the last decade, everything from autism’s definition, to its causes, treatments and even whether it can be conclusively defined as a modern epidemic is under intense investigation.

Once considered a rare disease, approximately 1 in 110 children in the United States is now diagnosed with ASD. And these numbers have surged in the last two decades. As recently as the 1980s the incidence was just one person in every 2,000.

In fact, in a just-released study by South Korean and US researchers last month, the incidence of autism is now believed to be as high as 1 in every 38 children. Funded by the advocacy organization Autism Speaks, the study followed 55,000 7- to 12-year-old children in a community outside Seoul, South Korea.

“They came up with the startling number that one in 38 children has an autism spectrum disorder,” explains Geraldine Dawson, Ph.D., chief science officer for Autism Speaks. “This raises an important question for the U.S.: How many kids in the general education classroom actually have an ASD but not a diagnosis? These children may have gone under the radar.”

As Dawson points out, it remains unclear whether this dramatic increase is due to changes in diagnostic criteria and/or detection (essentially broadening the number of people who would be considered to have an ASD); or whether there is an actual increase in cases.

The uncertainties surrounding autism have certainly led to contentious debate, and these days it seems everyone is chiming in, from neurologists and psychologists to politicians and a host of celebrities.

The result is a maze of statistics and data, confusing medical jargon and ultimately stress and frustration for parents trying to determine what’s best for their children.

Here we attempt to sort out the mystery of ASD and uncover potential causes of the disease, as well as expose the challenges that come from attempting to manage it.

A Little Bit of a Long History
One of the earliest examples of the enigmatic nature of autism comes from a famous story of a young boy found roaming the woods near a small village in 19th century France.

Appearing to be about 12 years old, the boy could not speak or communicate in any way. He threw terrible tantrums, was unaware of all societal norms and customs, and as he wandered half-naked through France’s deep, cold winter snow, he appeared to show no sign of pain. Brought in by a group of huntsmen, the entire village was baffled by the young man.

After being taken in and studied by Dr. Jean-Marc Gaspard Itard he seemed to make little progress. In his classic 1807 book “The Wild Boy of Aveyron,” Itard described the boy (who he named Victor), to be strangely detached from his caretaker. Even after several years, Victor showed no imagination, little memory, a peculiar gaze, an awkward gait and extreme tolerance to hot and cold temperatures. And though apparently not deaf, he seemed oblivious to “the shrillest cries.” Today, Victor’s story may sound eerily familiar to those diagnosed with low-functioning autism.

Despite this early discovery, it wasn’t until 1943 that the term “autism” actually came into parlance. Dr. Leo Kanner used it to describe 11 children with behavioral similarities that he identified as “insistence on sameness” and “autistic aloneness.”

Then in the 1960s, Bruno Bettleheim’s “refrigerator mother” theory popularized the notion that autism was a child’s response to having an unloving mother who failed to provide adequate emotional support. This theory has since been discredited.

By the 1990s, diagnostic criteria had changed and autism became understood as a spectrum of disorders ranging from the relatively milder Asperger Syndrome to classic Autistic Disorder and Pervasive Development Disorder — not otherwise specified (PDD-NOS). Each child can be affected differently, with different ages of onset and different degrees of severity.

What Causes Autism?
ASD’s cause is one of the most hotly debated matters concerning the disorder. Many experts assert that several causes combine to result in ASD — genetics, environment and vaccination have all been studied as potential culprits. Here we’ll go through each in greater detail.

Genetics
Like most disorders, genetics is thought to play a prominent role in the development of autism. Grabe says that from an early age, it wasn’t difficult to see that her son was different from his older brother, but pediatricians assured Grabe she was simply witnessing Colter's emerging personality.

As Colter cried inconsolably and had to be taught to play with each toy in the house, Grabe knew the problem couldn't be explained away as a simple personality trait.

“He wouldn’t let anyone hold him, and would turn stiff as a board when his father — who is very loving — would try to pick him up,” Grabe says. “It looked almost like Colter was in pain.”

It wasn't until Grabe’s son lost his language skills (at age 1) that pediatricians finally recognized a problem. Within two months, two different psychiatrists diagnosed him with autism.

Grabe says she’s confident that genetic factors caused her son’s autism. She notes that the repetitive behavior characteristic of ASD is a common trait throughout her family.

“I have ADHD, and my husband bounces his leg up and down so badly it shakes the house,” she explains. “My whole family has ticks like that.”

Indeed, Grabe’s observations parallel a theory developed after a surge of Asperger Syndrome cases in high-tech Silicon Valley. The theory holds that the high concentration of technology professionals in the area, who have complex analytical skills and often prefer jobs with less social interaction, may actually carry some of the genes that contribute to autism.

Though they may not have the disorder themselves, it’s possible that when individuals with similar traits reproduce, their genetic combinations increase the likelihood of producing children with ASD.

Scientists have also discovered a tight incidence of autism among twins. Research shows that if one identical twin has ASD, the other is between 60 and 96 percent as likely to have the disorder. Though the outcome is not guaranteed, the findings implicate a very strong genetic component. A number of different genes are likely involved in vulnerability to ASD, and pinpointing them is currently a main area of research.

Environment
Despite the bevy of studies indicating genetics as a key cause of autism, still many in the scientific community consider environmental factors an equal contributor.

Today, toxins are found in everything from cleaning products to produce. These chemicals are potentially harmful to anything they come in contact with, but especially damaging when exposure involves pregnant women and their fetuses.

In fact, mercury may be one of the most scrutinized environmental agents when it comes to autism. Though it’s clear that this highly toxic chemical can cause brain damage, what remains uncertain is the level that’s safe to the developing nervous system, according to a statement by the MIND Institute of UC Davis, one of the leading autism research facilities.

Certain medications can also be toxic. For example, thalidomide and valproic acid were prescribed for morning sickness until it became evident they caused major birth defects. In recent works, these medications have been linked to increased risk of autism.

Diet and specific food sensitivities are another potential source of concern. Children with ASD have been found to have allergies to gluten (found in wheat), casein (found in dairy products) and other sugary, processed foods.

Inching scientists closer to understanding how some toxins exert influence, researchers at the University of California, Davis found that children with autism are more likely to suffer from mitochondrial dysfunction.

Their study in the Journal of the American Medical Association explained the dysfunction as the cell’s inability to produce energy, causing oxidative stress, which is the same reaction that causes cars to rust and apples to turn brown — not so good for a developing nervous system.

Other pathways toward ASD symptoms are via digestive tract changes, inflammation of the brain and gut, and nutritional deficiencies caused by the body’s inability to absorb vitamins such as zinc, vitamin D and magnesium.

The Vaccination Controversy
One of the most divisive and heated debates concerning autism’s cause is that surrounding the supposed risk of vaccinations.

The measles-mumps-rubella (MMR) vaccine is of particular interest, as many parents have observed symptoms of autism shortly after exposure to this vaccine.

Some say it is simply coincidental that signs of autism appear at the same time that these vaccines are scheduled, around 12 to 18 months of age.

This controversy erupted in 1998 when prestigious medical journal The Lancet published a paper by Andrew Wakefield claiming an association between the MMR vaccine and autism. But in February 2010, after a three-year investigation, Britain’s General Medical Council found Wakefield guilty of unethical research and the article was retracted.

Wakefield has since moved to Austin and still stands by his original findings. He continues to attend lectures and conduct research involving the environmental causes of autism with a determined focus on vaccines.

“I’m not anti-vaccine,” Wakefield explains. “I’m for safety-first vaccines.”

He says he questions the excess of toxins used in immunizations such as mercury in thimerosal-containing vaccinations.

Whether thimerosal contributes to ASD has not conclusively been determined. A study partially funded by the MIND institute found that mice with immune system dysfunction were susceptible to the brain-damaging effects of thimerosal.

The preservative has been used in many vaccines, but due to uncertainty about its safety, it has been removed from most. It is still used in flu shots and found in some consumer products, as well as in some fish.

The MIND institute encourages mothers to be prudent, avoid mercury and request shots and vaccinations that are thimerosal-free.

After the article’s retraction, Wakefield continued his research at the Thoughtful House Center for Children in Austin. He says he is concerned with the cumulative effect of so many vaccines interacting with one another.

“Anything that injures the development of the brain could create autism,” he says.

With collaborators from the University of Pittsburgh and Washington, his research on effects of vaccine schedules on monkeys with compromised immune systems has been published in the journal NeuroToxicology. Currently he and collaborators are working on accounting for the rarity (and possible non-existence) of autism in Somalia.

Wakefield says that due to the powerful interests of pharmaceutical companies — as well as government liability — there’s enormous pressure on scientists to not investigate the implications vaccinations may have on development of autism.

“That to me suggests something is being hidden,” Wakefield says. He relates this to a widespread effort to discredit his book, “Callous Disregard.”

However, according to many practicing physicians and other experts, “studies continue to show that vaccines are not associated with ASDs.”

Nevertheless, much like Wakefield, many scientists disagree. For example, there is evidence that vaccines may be potentially unsafe as well as evidence of “vaccine sensitivity” in children with weakened immune systems and genetic predispositions.

Furthermore, a new scientific review published in the Journal of Immunotoxicology by Helen Ratajcak, a former senior scientist of a pharmaceutical company, claims the debate is not over.

In Ratajcak’s review of the entire medical literature on autism since 1943, she finds there may be reason to suspect that vaccination causes brain inflammation, which could indeed result in autism.

As a result, Wakefield urges parents to inform themselves and do their own research.

“I certainly recommend reading, becoming informed and talking to a doctor who is sympathetic to the idea that the current vaccine policy is not one-size-fits-all,” he says. “We’re all individuals who respond in different ways.”

While many would like to see this debate put to rest, studies show that vaccine safety is still a primary concern among most parents.

The Myriad of Autism Treatments
With no known cure for autism, parents are forced to choose from a variety of treatments in the hope that their child will one day become an independent adult.

Because the causes and symptoms of ASD vary, what works for one person may not work for another. And to understand the costs and benefits of a certain therapy, some parents sift through heaps of information, while others learn, through trial and error.

Despite the differences in pursuing treatment, a few points do seem clear. For instance, the earlier therapy is applied to an autistic child, the better chance of success. This makes early diagnosis especially important.

Secondly, most experts agree that treatment needs to address communication and behavioral deficits. This treatment can be intensive, up to anywhere between 25 to 40 hours a week.

Applied Behavior Analysis is the most widely accepted treatment for ASD. It uses a system of individualized training that reinforces positive behavior and discourages negative behavior. Later in life, occupational therapy teaches life skills from personal dress to social skills.

Still many other forms of autism therapy exist, from sensory modification to physical therapy, as well as equine and speech therapy, among others. Each of these uses different approaches and strategies to tackle the various symptoms of ASD.

Still other therapies involve a more comprehensive biomedical approach. They treat a combination of biological, medical and behavioral aspects of ASD. This form of treatment often includes diet restrictions, eliminating gluten and casein as well as processed foods, chelation and in some cases enhanced vitamin supplementation to address the nutritional deficiencies common in children with ASD.

At present, this multifactorial therapy is considered somewhat controversial, yet it is gaining wider acceptance in the medical field. Public health figures say there is no proven evidence of the effectiveness of these treatments other than anecdotal, and warn that some (like chelation for example) can be potentially dangerous.

But parents like Tracy Burwell say they’ve found the biomedical approach proves effective for them. After her son was diagnosed with mild autism at the age of 3, Burwell says she felt lost in the endless maze of treatment options.

“The doctor diagnoses your child, but they don’t really help you after that,” she says. “It’s like, ‘here’s a little pamphlet’ and go figure it out on your own.”

So she did. She hit the search engines and researched as much as she could.

Immediately after the diagnosis, she put her son, Jackson, on a gluten and casein-free diet, and moved to Austin to be closer to the Thoughtful House Center for Children (THCC). According to their website, the center’s mission “is to advance the treatment and understanding of developmental disorders through medical care, education and research."

After a series of tests, the THCC found that the boy had mercury and lead poisoning. He was prescribed a regimen of B-12 and other minerals to detoxify him.

“Once we started him on it, it worked wonderfully,” Burwell says. “I truly believe it was the combination of nutrition, exercise and holistic medicine that brought Jackson further down the line of recovery.”

He is also involved in behavioral therapies such as equine, speech and Applied Behavior Analysis. By age 4 Jackson said his first word, at 5 he started saying "mom." Today, he frequently tells his mother that he loves her.

“You have to accept the diagnosis, then figure out what you need to do. All I really want is Jackson to be a productive member of society,” Burwell says. “It’s all about hope.”

Living with Autism
The effects of autism affect more than just the individual. The stress of dealing with this condition puts immeasurable strain on the entire family.

Statistics show that there is a staggering 80 percent divorce rate among parents with autistic children, and siblings often feel neglected as their parents become consumed with caring for their autistic child.

Hectic days are filled with school, going to therapies, therapists coming to the house-- because there is nothing these parents won’t do to help their child.

As Burwell puts it, “My week consists of Jackson, Jackson and more Jackson.”

She says she wonders what she denies her youngest son, but luckily Jackson and his little brother are the best of friends.

Former Major League Baseball Player Greg Swindell remembers the heartbreak he felt when his son, Dawson, was diagnosed with low-functioning autism at 18 months.

“He was a normal baby, started talking and making sounds, then at around 15 months began to revert and never spoke after that.“ Swindell says. “It was complete shock, not knowing what autism really was, and I was extremely saddened that my only son would be diagnosed with this.”

The astronomical costs alone can become overwhelming, and often can cause unbearable pressure and stress. In the beginning Swindell says it cost him nearly $5,000 out of pocket a month before insurance started helping his family cover therapy costs. He now spends an estimated $60,000 a year.

For many others, insurance covers no expenses at all, and for those who are on restrictive, organic, gluten-free diets the cost of food can add up quickly. The Center for Disease Control estimates that the lifetime cost of one affected person could reach as much as $3.2 million, and for many, insurance doesn’t cover a single expense.

Giving Hope
Fortunately, that’s where Maggie’s Hope comes in. Unlike autism non-profits that raise money for research, Maggie’s Hope provides funding to families struggling to afford the mounting costs of living with the disorder.

This story of hope for families dealing with ASD begins with Maggie Scarbrough.

“Maggie was a vibrant, healthy, amazing and perfect child,” her parents write in the non-profit’s mission statement.

But as for many parents familiar with the narrative of autism, her story takes a dramatic turn. Ear infections begin to plague the otherwise healthy baby girl, and she was put on a consistent rotation of antibiotics.

“Our little girl, as we now know, had a compromised immune system,” the manifesto reads. “Round after round of amoxicillin further weakened her ability to fight environmental toxins.”

She received another round of vaccines and flu shots, and by 20 months she began to show symptoms of autism. Her family, including her aunt, Loriana Hernandez, local anchorwoman for FOX-7 news, worked desperately to sort through the maze of treatments and rising costs.

“While realizing I could not help my sister on my own financially, I began to wonder what other families do and how they get by,” Hernandez says. “My entire family pitches in to make the bills for them.”

Maggie’s Hope was born out of this frustration. Hernandez's position at FOX-7 News allowed her to air a story on autism, which compelled viewers to take up Maggie's cause.

“I have friends who spend $400, $4,000 and even $10,000 a month, depending on what they’re willing to spend or risk financially, Hernandez explains. “Remember, the goal is to get these children help between 3 to 8 years old while they are developing before it’s too late. They know it’s now or never. Some take loans out on their homes or sell them to help pay for these treatments.”

Through Maggie’s Hope, families can apply for bi-annual grants that may help pay for treatments or special foods.

While hundreds of families applied for grants in the non-profit’s first year, Hernandez says low funds limited assistance to only 10 families. She cites this as a central struggle facing not only the autism community, but society as a whole.

“Who will take care of thousands of grown autistic children who can’t take care of themselves?” she asks. “We have a choice: help them now and go broke or we’ll pay for helping them later through group homes and whatever is available and necessary.”

As for Maggie, now 5, she’s progressed tremendously through a combination of biomedical and traditional behavioral treatments, her aunt says. She also goes to a psychologist with her older sister to help them both deal with the disorder.

“Try anything, anything to find hope,” Hernandez says. Her advice to others dealing with a loved one on the autism spectrum: “Take a deep breath, be patient and please ask for help. This is not a journey anyone can go alone.”