ARTICLE: The Challenges of Raising a Child With Autism
Raising an autistic child is a long journey, but parents have many options and places to turn for help.
Looking back, Cori Ayala understands that the signs made sense. Before her son Evan was diagnosed with autism at age 3, he had behaved differently from his older brother, Alex. Evan was happy and affectionate, Ayala says. But “he developed pretty rigid routines that had to be adhered to or he would just totally fall apart.”
When she walked Alex to his school in Sacramento, Calif., Evan insisted that they take the exact same route and use the same entry to school every day. When he slept, his parents had to lay his blanket the exact same way, with the same edge touching his upper body. By age 2, Evan spoke no words — not even “Mama” or “Dada.”
When Evan was diagnosed with autism, Ayala says, “It was one of the worst days of my life. I was paralyzed. I was numb. I wanted to retreat to my little house and just close down. I was absolutely devastated and so was my husband.
“I was so afraid of that word ‘autism’ because I thought of Rain Man and other people with autistic kids who were nonverbal and mentally retarded. I had no idea what Evan was going to be like.”
Mary Beth Steinfeld, MD, the developmental pediatrician who diagnosed Evan, understood those fears.
“Mary Beth said to me, ‘Don’t think about the word ‘autism’ if it scares you,” Ayala recalls. “She said, ‘Just think about your son and what strengths he has and where he needs help. Focus on him because he doesn’t scare you.”
And with those words of wisdom, Ayala — like so many other parents — began the demanding journey to help a child with autism grow to full potential.
Coping With an Autism Diagnosis
Robert A. Naseef, PhD, is a clinical psychologist in Philadelphia who wrote the book, Special Children, Challenged Parents. He is also the father of a grown son with autism. Naseef has counseled many parents who have reacted to an autism diagnosis with heartbreak and anxiety, as well as anger and a sense that life has been unfair. He encourages the honest emotions, he says. “You don’t have to kid yourself about how hard it is.”
But “all the while, love makes giving up unthinkable,” Naseef says. “The good thing about getting the diagnosis is that then you get a direction in what will help your child. Usually, when kids get the right help and start making progress, their parent’s mood brightens and you have some hope again.”
Early intervention is key, experts say. “Parents have to get going right away because time is of the essence. You need to get focused on what your mission is,” says Nancy D. Wiseman, founder and president of First Signs Inc., a nonprofit organization that educates parents and professionals about early signs and treatment of autism.
“Your life is going to be different,” says Wiseman, the mother of a 12-year-old daughter diagnosed with autism at age 2. “The dreams that you once had for your child’s future are going to be different. But you are going to be able to build dreams for your child.”
The task is monumental for both child and parent. “The parents have to provide all this external structure for the child to be successful,” says Steinfeld, who is also an associate clinical professor at the UC Davis MIND Institute, a research organization on neurodevelopmental disorders. “We tell people, ‘This is a marathon, not a sprint.'”
Read Up on Autism
Parents of newly diagnosed children often know little about autism, experts tell WebMD. One of the first challenges is to dispel misconceptions and understand realities.
Children with autism are very different. “There’s such a range of function,” Steinfeld says. “There are very high-functioning children who are going to college, driving, taking airplanes, doing fine. But there are children who still need supervision and assistance when they’re in junior high and high school.”
While authoritative books and web sites are a good place to start, Steinfeld points parents toward the National Academy of Sciences’ “Educating Children with Autism,” which can be found online. The in-depth guide helps to familiarize parents with the maze of specialists and therapies.
In particular, the “recommendations” chapter “states what the goals need to be, what the priorities need to be, and how much intervention is needed,” Steinfeld says.
“Children need to have intensive intervention that is teaching them adaptive skills,” she adds. “Left to their own devices, children with autism are interested in their own special interests — whether it’s something like self-stimulation or something like a narrow interest, such as excessive interest in maps, electricity, vehicles, or the solar system.”
Build a Treatment Team to Help Your Child
According to a child’s needs, parents must work with their child’s pediatrician to start building a care team, Wiseman says. These specialists might include: developmental pediatricians, child psychiatrists, speech-language pathologists, occupational therapists, physical therapists, and others.
But be warned: Long wait lists are a common complaint, experts say. In some areas of the country, Wiseman says, “there might be a six-, 12-, or 18-month wait to see some of these professionals.”
According Wiseman’s book, Could It Be Autism?, parents can be assertive by taking these steps:
• Ask to be placed on a list of patients who can come in on short notice if a cancellation occurs.
• Ask your pediatrician to advocate for your child by placing a call to the specialist.
• If you can’t get in to see the specialist right away, ask his or her staff to recommend someone else who can help your child during the waiting period.
Early Intervention and Public School Programs
Every state has publicly funded programs to help children at risk for developmental delays and those diagnosed with disorders such as autism. Pediatricians can refer children to these services, Wiseman says.
For example, for children under age 3, states provide early intervention programs. Why start with children so young? “Their brain is developing during these early years, and it’s committing synapses to a way of thinking. So we’re trying to stop the repetitive, narrow thinking or self-stimulatory thinking and expand their capacity to learn other things,” Steinfeld says.
For children 3 and older, public school districts are responsible for providing an education through an individualized education program, or IEP. But quality can vary from district to district, so Wiseman advises parents to keep watch over their child’s education and services.
Publicly funded programs typically provide speech, occupational, physical, and behavioral therapy, as well as a special education teacher.
While public services are typically free or low-cost, they can be limited. “It usually doesn’t provide the intensity of services that parents want,” Steinfeld says. Many parents supplement with other therapies, for example, after-school music or play therapy.
Parents of newly diagnosed children are frequently blindsided by the major financial struggles that lie ahead. Because publicly funded services often provide fewer services than parents desire — and because insurance often doesn’t cover certain types of therapies — many parents end up paying huge sums out of pocket.
In a 2007 study on the financial impact of autism published in the Journal of Family and Economic Issues, co-author Deanna Sharpe, PhD, CFP, found parents who paid as much as $30,000 per year for behavioral therapy. Sharpe is an associate professor in personal finance planning at the University of Missouri.
Applied behavioral analysis therapy, where an autistic child may have to sit for eight hours a day learning to speak or perform simple tasks, can cost up to $100,000 a year. In Arizona, Gov. Janet Napolitano has signed House Bill 2847 into law, requiring insurance providers there to cover the costs of the treatment.
But in other states, parents have depleted savings accounts, emptied 401(k) plans, or taken out second mortgages. Some have filed for bankruptcy. To add to the burden, one parent often quits a paid job to stay home to supervise the child and coordinate treatments.
“We’re willing to do anything,” Wiseman says. “I’ve downsized my home, I’m willing to go live in a shack just to know that my daughter can have the quality of life that she deserves.”
She urges parents to scrutinize their health insurance plans to understand the benefits and also enlist providers to help get services covered, although the attempt doesn’t always work.
Wiseman and other resourceful parents have even undergone special training to provide some simpler services on their own, such as play therapy or development of communication skills.
Sharpe’s advice: consider hiring a certified financial planner or a chartered financial consultant who specializes in special-needs planning. A financial planner can help parents to develop a monetary strategy shortly after an autism diagnosis.
For low- and middle-income households, “families will have to be somewhat proactive,” she says, in explaining their situation and asking about reduced fees or pro bono work.
Finding Support for Parents and Siblings
Dealing with autism can place stress on couples as well as the child’s siblings, according to experts.
“In the beginning, it’s so consuming,” Naseef says. But in time, “I think the marriages under the most strain are the ones that get put on the back burner. Nobody’s paying attention to it and just dealing with the child’s autism.”
He urges couples to devote some time to their marriage. “It might be hard to get a babysitter, but people figure out ways to have an in-home date,” he says, such as enjoying a quiet dinner and watching a video after the children have gone to bed.
“Take some breaks from talking about autism because it’s not going to go away,” he adds. “You’re going to learn to deal with it over time. You’re going to make progress, your child’s going to make progress, but you need breaks.”
Siblings often feel sidelined by the extensive needs of the child with autism. Furthermore, while some siblings can interact with a brother or sister who has autism, others grieve the loss of a “normal” playmate, Naseef says.
Networking with other parents and siblings can help families cope, he says. Support groups exist even for siblings. One resource: the Autism Society of America web site, which lists local chapters that offer support to families.
Ayala’s son Evan is now 11. With a full-time aide, he has mainstreamed into a public school fifth-grade class and participates in the school’s program for gifted children. “Evan is a very bright boy. He is delightful. He is odd and quirky,” Ayala says, “but he has a sense of humor and is a full participant in our family.”
Raising a child with autism will have its ups and downs, Wiseman says. “There are going to be times when you want to crawl back into bed and put the covers up over your head, and occasionally, you have to give in to that,” she says.
“But you have to get right back up and get going. You have to always keep your eye on the prize, which is your child.”
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