Autism: Fighting for Our Kids

Kyle's Story

When Tori O’Neal McElrath’s son Kyle was two she began to notice he wasn’t developing in the same pattern that her older son had.

“I noticed Kyle’s language had not kicked in,” McElrath said.

She said her younger son had spent a lot of one-on-one time with adults, interacting with his parents and older sibling. McElrath said that until age two, Kyle had developed “neuro-normally,” but was not speaking. That’s when she decided it was time to visit the pediatrician.

“He told me that [Kyle] was fine, he was normal,” said McElrath.

The pediatrician told her that her son was showing the typical signs of a second child whose older brother often spoke for him. McElrath would later learn that was not the case.

In October 2006 her son’s preschool teacher recommended he be taken to a speech pathologist. The pathologist told McElrath that Kyle was showing classic signs of Persuasive Developmental Disorder Not Otherwise Specified, a diagnosis commonly made when a child only shows some of the signs of a development disorder.

“I Googled it and everywhere I looked, autism popped up. I though what the hell?, said McElrath.

She said she began to absorb as much information on autism and speech disorders as she could.

“As a parent you don’t want to think your child has a broken toenail, much less this,” she said.

The speech pathologist suggested that Kyle be taken to a specialist at Georgetown University.

“I thought ‘okay,’ I will take him and I am going to prove her wrong’,” McElrath said.

After a battery of tests Kyle was diagnosed with High Functioning Autism Spectrum Disorder.

“Technically speaking he has the ability, if given proper intervention, he could adapt and cope and possibly go to college,” said McElrath.

Upon her sons diagnosis, McElrath says she went to the “University of Google” researching autism treatments methods and therapies.

“I did not want to be in denial because denial would be taking away from my child. I had to almost become a Master’s student in autism,” she said.

What is Autism?

According to the Center for Disease Control, autism is a complex and often confusing developmental disability known as a spectrum neurological disorder. It affects how the brain receives and interprets information. Often diagnosed before the age of three, a child might have difficulty with social interaction, communication and speech skills.

The disorder has grown at alarming rates, with one out of 150 children being diagnosed annually. Often children and adults with autism sometimes display repetitive body movement such as rocking, hand flapping or ritualistic behaviors such as stacking or lining up objects in a certain order, or a preoccupation with certain objects.

Symptoms are also classified as an impaired ability to make friends with peers, initiate or sustain a conversation with others. Sometimes a child might lack imaginative and social play.
Other times, according to the CDC, children with autism are prone to outbursts as a result of frustration in not being to verbally communicate. Autistic children sometime undergo hours or speech, physical and occupational therapy.

The Financial Impacts of Autism

McElrath immediately began to seek treatment options for her son. It was recommended that Kyle receive 25 hours of intensive therapy a week; however, her insurance company would only foot the bill for one hour per week.

“We have paid for his therapy out of our own pocket because the insurance company disputed our claim. They said autism was not a neurological disorder,” said McElrath.

Cindy Pike, executive director for the Autism Society of America’s (ASA) Greater Georgia Chapter and mother of an autistic child, said that for many parents the cost of therapy for autistic children is astronomical.

“My son’s therapy bill is more than my mortgage,” said Pike.

While Medicaid in Georgia covers some costs of occupational and physical therapies, Pike says many families face therapy and childcare bills of $30,000 to $100,000 annually, totaling anywhere between $3.5 and $5 million in costs over the coarse of a child’s life.

“What isn’t paid [by insurance], you just have to figure out. People are just determined to do what ever it takes to help their children,” said Pike.

Pike says for many parents the guilt of not being able to provide for their autistic child can be overwhelming.

“No dollar amount is too high, no amount of time you can spend with your child is too much,” she said.

Kyle currently undergoes 15 hours of therapy each week.

“We are throwing in all our resources and we are still short,” said McElrath.

Kyle also undergoes five hours of therapy with his parents at home.

Helping Parents Cope

The ASA is a program that helps parents cope with their child’s diagnoses through classes and seminars.

“There is no A, B and C to autism. There is no protocol to follow once your child is diagnosed,” Pike said. “There are so many element of how to help your child, but there are not quick reference answers.”

Pike said the ASA receives dozens of calls and e-mails every day from parents with a wide range of issues and concerns.

In the late 1990s the autism criteria was broadened, thus making it a “spectrum” disorder. Children who might have otherwise gone undiagnosed, or diagnosed with other disorders, were put under the autism umbrella.

“When the criteria was broadened we certainly saw an increase. We also saw an increase in awareness,” said Pike.

While real cause of autism remains unknown, recently theories such as genetics, vaccines and premature births have been studied as causes, being simultaneously supported and refuted.

“The truth is we just don’t know what causes [autism],” said Pike. “There is no cure, but now we are seeing more treatment options and therapies.”

While speech, occupational and physical therapies are standard, more and more parents are turning to alternative treatments such as diet. Parents are also seeing benefits to school inclusion, keeping children in the regular education classroom versus special education classes.

Staying Strong, Not Wasting Time

McElrath kept her son in daycare and summer programs with non-autistic children.

“I didn’t take my child and slink away with shame, we stayed there at that school,” said McElrath.

She said she saw the value in staying [in mainstream classes] as a message; she wasn’t wasting any time hiding her child from the world.

“His diagnosis caused me very quickly to get off the pity party and focus on my child. There is not time for that, there is not time for pity,” she said.

Pike said an autism diagnosis is an emotional experience for families.

“A lot of people, when they hear their child has autism, they go through a grieving process. You almost have to, but then you have to just jump in and get your child what he or she needs,” Pike said.

McElrath agrees: “I would tell any parent of an autistic child that it is okay to grieve, it is okay to be afraid, but be afraid while moving forward, not even a second can be wasted.”

Both McElrath and Pike have made conscious efforts to keep their families in focus.

“This family is not just Kyle,” said McElrath. “That has been a hard lesson to learn.”

Pike, who has a 14-year-old daughter in addition to her son, said that sometimes the guilt of spending so much time with an autistic child can make it impossible at times to balance the needs of another child.

“You have to go between what is fair and what is necessary. He needs me more sometimes,” said Pike.

She does believe that her daughter is more mature and compassionate as a result.

“There are benefits to growing up around children with disabilities. This greatly impacts children in a positive way. None of us signed up for this. It has totally changed the dynamic of my family,” Pike said.

Recent statistics have shown that the divorce rate among parents with autistic children is higher than the national average. According to Pike, 80 percent of parents with autistic children get divorced within the first five years of diagnosis.

“That just speaks to the amount of stress a family is under,” said Pike.

Facing the World With Autism = Educating the World on Autism

Pike believes that a strong family unit is pivotal to coping with life with autism. She said families need to rely on one another, because the outside world often does not understand what a family is facing.

“Initially when you get a diagnosis and you see the difference between a friend’s child and your child it hurts, and it makes friendships awkward,” she said.

That is why groups like the ASA are so important, says Pike, because families can rely on one another when facing autism and develop relationships with other parents facing the same challenges.

“Nobody else really gets it,” she said. “Going out in public becomes difficult. If my child is having a meltdown while I am in the middle of a conversation, I don’t want to have to stop what I am doing and explain.”

Pike understands that it is easy for people to misinterpret an autistic child’s actions.
“Try to understand. Even if you don’t understand, try not to judge,” said Pike. “There is so much ignorance, stares – parents are dealing with enough they don’t need to deal with that.”
Pike suggests that friends and families of those dealing with autistic children be supportive and informed.

“If you have a question, ask. I would rather somebody come up to me and ask me about my child, than be misinformed,” she said.

Finding Perfection in an Imperfect World

Some of that stress can come from need to “fix” an autistic child, something McElrath has railed against.

“Kyle doesn’t need fixing, he is perfect in his imperfection, and aren’t we all?” she said. “Kyle is a lot of things and this, autism, will not be the thing to define him.”

McElrath said she is inspired by her son’s perseverance.

“I have learned that you can get up every morning and make a conscience decision to be happy despite your circumstances,” she said. “I watch this child kick autism’s booty ever day.”

McElrath describes her child as a “really cool kid with an awesome smile.”

“He could be bitter, but he is not,” she said.

McElrath is continuing to fight her insurance company. She and her husband write letters each month and have gotten their child’s specialist to write as well.

“It is one more thing added to the list of crap we have to deal with. Should I really have to spend time dealing with an insurance company? No. But they don’t know who they are messing with,” said McElrath.

However, McElrath believes that the voices of families dealing with autism are getting louder.

“We are not going to be polite, we are going to be heard and we are going to fight for the rights of our children,” she said.

She is concerned at the rate in which diagnoses are being made – currently the rate is 1-150, when previous it was 1-1000.

“What is it going to take for insurance companies to wake up? One out of 50? No we can’t accept that,” said McElrath.

April 2, marked the first ever World Autism Awareness Day as designated by the United Nations, and on April 9 Gov. Sonny Perdue signed a proclamation proclaiming April Autism month in Georgia.

“This helps increase awareness and acknowledges autism, this brings awareness to an epidemic,” said Pike. “We want government officials to be aware also.”