Living with Autism
Autism is a neurological disorder that strikes as many as 1 in every 150 children and affects millions of families worldwide. Every day, 67 children in America are diagnosed with this disease. That's one new case every 20 minutes.
According to the CDC, autism is one of a group of disorders known as "autism spectrum disorders." Children with autism may have trouble interacting socially and communicating and may exhibit unusual behaviors. The severity of the disease varies from child to child. Some attend public school and are considered "high-functioning," while others go their entire lives without ever saying a word.
Currently, there is no known cause and no known cure. But, if you're living with autism, there is no mystery about how difficult and devastating it can be. In the documentary Autism Every Day, eight families living with autism speak out about their struggles.
"This is the national health crisis of our time," says Katie, the mother of an autistic son. "This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it."
Katie says her son Christian progressed normally for the first two years of his life. "He walked, talked, did everything on time," she says. "[He was] a beautiful, loving little boy."
Then, Katie began to notice a regression in his development. "I noticed he was losing words, and I thought I was crazy," she says. "I thought I was doing something wrong." Instead of saying, "I love you, Mommy," Katie says her son would stare at her blankly like he didn't understand her anymore.
A pediatrician chalked Christian's behavior up to the fact that Katie had just given birth to a new baby, but she says she knew there was something else wrong. Eventually, Christian was diagnosed with autism.
Jesse's son Adam also developed normally at first. Then, when he was 18 months old, Jesse says the twinkle in his son's eyes started to fade away. "It was just devastating because I was losing my boy to a world that I didn't understand or could comprehend," he says.
Like many Americans, Jesse says the only example of autism he had ever seen was in the movie Rain Man. "I said, 'Adam's not like Rain Man,'" he says. "That was my reference."
When Michele first noticed that her son Danson was behaving differently, she says she mistakenly thought he was going deaf. After many misdiagnoses, she also learned the truth.
One common symptom is known as "stimming," which is short for self-stimulatory behavior. This physical manifestation of the disease is erratic, repetitive and sometimes uncontrollable. Some children may clap their hands repeatedly, while others may grind their teeth or jump up and down.
Anna, Jesse's wife and Adam's mother, says her son is into head-banging. "He loves to bang his head against you," she says. "Sometimes it hurts."
Katie says Christian uses hand gestures to express himself. She and her husband have tried to redirect these movements toward productive activities, like playing a musical instrument or participating in physical activities.
The creativity and vigilance required to raise an autistic child can be exhausting for some parents. "[It's] physically draining," Jesse says. "You're constantly watching, and if you're not watching, someone else has to watch and see what he's doing [and] try to redirect him, try to keep him connected in our world as opposed to the world he wants to drift off into."
Some parents go to great lengths just to get their child's attention. "Sometimes you just feel so small," Michele says. "Just to get your child to look at you, you will do anything."
Jesse and Anna sold their home and moved in with Anna's mother so they could afford their son's therapy and medical treatment. "We had to make that choice for Adam," Jesse says. "I loved that house. I remember walking out, and I just looked at that house for one last time. It was almost like looking at my life that could have been."
The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation's largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end. Michele's first marriage was one of them.
"Having a child who needs what Danson needs made it really difficult for me to balance my life and be a mother and have a job and be a wife," Michele says. "I didn't give that marriage what I could have because I had nothing left to give."
Now, Michele says she and her ex-husband are best friends, and she's happily remarried. "My husband, Michael, came in and made this choice to love us and to be with us," she says. "He's a calming force in Danson's life."
She says diagnosis of autism rests on three main developmental deficiencies—impaired language, impaired social interaction and repetitive behavior. But Dr. Batra says that because autism is a spectrum disorder, it affects everyone who has it in a different way. "You could have a very severely impacted individual with [no] language. Or, on the other spectrum, have a very high-functioning individual who has plenty of language but may not be able to use it socially, or has some odd behaviors but could go and be in a typical classroom setting."
The warning signs of autism.
According to Dr. Batra, the medical community believes autism is caused by a combination of genetic predisposition and environmental triggers like infections, viruses or trauma at birth. While some parents claim that one of the possible triggers may be linked to childhood vaccinations, the CDC says they found no evidence to support that vaccines cause autism.
"Sometimes when my friends come over and he does something really embarrassing it kind of makes me feel like, 'Why does it happen to me?'" Andrew says. "And it makes me feel like I'm just different from everybody else and I'm trapped inside my own world like David is."
Sometimes he feels upset that the family seems to revolve around David. "I just think they should give me some attention, too. He gets all the attention every day, every second of my life, so, like, I'm just off in my own world."
Andrew also wants other people to see all the great things about David. "What I want people to know is that he's not dumb, but he is really smart in his own way. He can swim really well. He can Rollerblade as well as I can. He can do so many things and he's really lovable. He loves to be with his family."
Scott—Andrew and David's father—says juggling his sons' unique needs "is a constant balancing act and there's a lot of guilt involved."
The hard work sometimes pays off…in a big way. Michele says her son recently spoke to her by spelling out words on a letter board. "The first thing he said to me was m-o-m, s-o-r-y," she says. "He went on to say his best friend is Mom. He went on to say for his birthday he wants jeans and an iPod."
It's important to note that what works for some autistic children may not work for all of them.
Dr. Batra says early intervention and therapy have also helped her autistic sons make great progress and achieve higher function. Her youngest son is now "mainstreamed."
"Because they're not in a wheelchair, or they're not blind or not visibly disabled, they're really harshly judged," Katie says.
"What families and children with autism…what we really need is compassion and understanding. And what so often we're confronted with is scorn and disdain," says Alison, the mother of a 9-year-old autistic daughter. "It would be so much more valuable for people when they see a family struggling with a child with autism in a restaurant or on an airplane to say, 'Can I help you?' Or just to offer a knowing smile. Because that's not a child who is acting out, that's not a mother who doesn't know how to control her child or who's a bad mother. That's a family that's doing the best they can."
Despite the difficulties of raising an autistic child, it can be an amazing experience, too. "I often said that years ago I was looking for a 'love past infinity'—that's what I would call it, something that I loved greater than myself. And when Adam came into my life, it was that love past infinity," Jesse says. "The love that he gives me, the way that he goes through all of this therapy and he's always positive. The simplest things are so difficult for him to do, and he tries his best. It's just made me a better person, a more patient person."