Parenting Tips for Daily Life With an Autistic Child

Learning all you can about autism and getting involved in treatment will go a long way toward helping your child. Additionally, the following tips will make daily home life easier for your both you and your autistic child:

1. Be consistent.
Autistic children have a hard time adapting what they’ve learned in one setting (such as the therapist’s office or school) to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your child’s environment is the best way to reinforce learning. Find out what your child’s therapists are doing and continue their techniques at home. It’s also important to be consistent in the way you interact with your child and deal with challenging behaviors.

2. Stick to a schedule.
Autistic kids tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.

3. Reward good behavior.
Positive reinforcement can go a long way with autistic children, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.

4. Create a home safety zone.
Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your child can understand. Visual cues can be helpful (colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety proof the house, particularly if your child is prone to tantrums or other self-injurious behaviors.

5. Make time for fun.
A child coping with autism is still a kid. For both autistic children and their parents, there needs to be more to life than therapy. Find ways to play and have fun together. Don’t obsess over whether or not these activities are therapeutic or educational. The important thing is to enjoy your child’s company!

Finding help and support
Caring for a child with an autism spectrum disorder can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isn’t ever easy, and raising a child with special needs is even more challenging. In order to be the best parent you can be, it’s essential that you take care of yourself.

Don’t try to do everything on your own. You don’t have to! There are many places that families of autistic kids can turn to for advice, a helping hand, advocacy, and support:

  • Autism support groups – Joining an autism support group is a great way to meet other families dealing with the same challenges you are. Parents can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation many parents feel after receiving a child’s autism diagnosis.
  • Respite care – Every parent needs a break now and again. And for parents coping with the added stress of autism, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks. To find respite care options in your area, see the box to the right.
  • Individual, marital, or family counseling – If stress, anxiety, or depression is getting to you, you may want to see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling—the good, the bad, and the ugly. Marriage or family therapy can also help you work out problems that the challenges of life with an autistic child are causing in your spousal relationship or with other family members.

For Mothers of Children With Autism, the Caregiving Life Proves Stressful

This isn’t the most uplifting pre-Thanksgiving entry, but this new study really resonated with me. Holidays can be particularly challenging for children with autism and their moms. To help Paige (my 13-year-old daughter with autism) enjoy her five-day break from school, I’m going to keep her busy and spend as much time as possible outside.

If you know a child with autism, I know his or her mom would appreciate any moral support you can give. I give thanks daily for the many people in my life who help us in so many ways. The following is a news release concerns research originating out of the University of Wisconsin, Madison:

FOR MOTHERS OF CHILDREN WITH AUTISM, THE CAREGIVING LIFE PROVES STRESSFUL

Common wisdom tells us that to be the mother of a child with autism is to assume a heavier caregiving burden in life.

Now, in companion studies, the daily physiological and psychological toll on mothers of adolescents and adults with autism is documented, revealing patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in caregiving than mothers of children without disabilities.

“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison’s Waisman Center who was involved with both studies.

The new studies, which currently (November 2009) appear online in the Journal of Autism and Developmental Disorders, probe the daily experiences of mothers of adolescent and adult children with autism over a period of eight successive days. On four of those days, the researchers measured levels of maternal cortisol, a hormone released by the adrenal gland in response to stress. Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress.

“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, director of UW-Madison’s Waisman Center, an authority on families of children with developmental disabilities, and the leader of an ongoing longitudinal study of families of individuals with autism. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”

Changes in the pattern of cortisol expression in the general population have been shown to be associated with chronic health problems and can influence such things as glucose regulation, immune function and mental activity. Autism is a widespread condition in the United States, affecting an estimated 1 in 100 children. It occurs on a spectrum of severity and is characterized by deficits in communication and social skills, and the presence of rigid, repetitive behaviors. Many with the condition require lifelong care.

For the “daily diary” study, mothers were contacted at the end of each day and asked a series of questions about time use, episodes of fatigue, leisure activities and stressful events. The data were compared with a nationally representative sample of mothers of children without disabilities drawn from a study known as MIDUS (Study of Midlife in the U.S.), directed by Carol D. Ryff, a UW-Madison professor of psychology.

For a mother of a child with autism, daily life includes at least two more hours of childcare than mothers of children without disabilities. These mothers were also more than twice as likely to be fatigued and three times as likely to experience a stressful event each day. Importantly, nearly a quarter of their days included work interruptions versus fewer than 10 percent of days in the comparison group, suggesting a potential economic impact.

The new findings also reveal a thread of resilience. Compared to mothers of children without a developmental disability, mothers of children with autism were just as likely to have daily positive interactions, serve as volunteers and lend support to others within their social networks. Together, argue Seltzer and Smith, the research results demonstrate the need to develop programs and networks of support for families of people with autism throughout life.

“We need to find more ways to be supportive of these families,” says Smith, noting that the added caregiving burden and potential health problems associated with chronic stress can be a devastating combination. More and better programs of respite for parents and flexible policies on the part of employers, she says, are good places to start. In addition, Seltzer notes that interventions that reduce behavior problems can improve the health and quality of life of both the child and the caregiving mother.

Both studies were funded by the National Institute of Aging, with additional support from the National Institute of Child Health and Human Development. In addition to Smith and Seltzer, co-authors of the daily-diary study include Jan S. Greenberg, Jinkuk Hong and Somer L. Bishop, all of UW-Madison, and David M. Almeida of Pennsylvania State University. Co-authors of the cortisol study include Greenberg, Hong and Almeida, as well as Christopher Coe of UW-Madison and Robert S. Stawski of Pennsylvania State University.

Autism Linked to Brain Inflammation

Carlos A. Pardo, MD, of Johns Hopkins University said in a press release that the findings reinforce the theory that inflammation in the brain is involved in autism, although it is not yet clear whether it is destructive or beneficial or both. Inflammation occurs when the immune system is activated, causing cells to rush into the area and produce swelling.

Despite all the marvels of modern medicine, the autistic brain is still highly uncharted territory. Doctors have struggled to determine the cause of autism since Leo Kanner, MD, first defined it in the 1940s, but the exact reasoning has remained elusive.

Autism is a complex neurological and development disorder that affects about 1 in 500 children. The disorder has become increasingly more common in recent years, although many researchers feel that improvements in diagnosis may account for this increase. It is estimated that as many as 1.5 million American children and adults have autism.

People with autism may repeat words or phrases continuously, have difficulty expressing their thoughts and feelings, are resistant to change, and may display aggressive or even self-injurious behavior.

In the study, researchers analyzed frozen brain tissue from 11 deceased autism patients aged 5 to 44 and found that inflammation is clearly a feature of the disease in certain regions of the brain. Compared with normal brains, the autistic brains showed evidence of active inflammation in various regions, although it was most prominent in the cerebellum.

They also found ongoing inflammation in the fluid surrounding the brain and spinal cord. And they found cytokines, or potent chemical messengers that are secreted by the immune system and lead to inflammation.

Scientists say their findings open up “new possibilities for understanding the dynamic changes that occur” in autistic brains. They speculate they could lead to new treatments and, potentially, specific diagnostic tests that look for inflammation in the spinal fluid of autistic patients. There is currently no blood or lab test to check for the disease.

Imaginative Play Therapy For Autism

“The Joker has stolen the world’s biggest diamond, and it’s up to Batman and Robin to get it back. On a video monitor, hands move toy action figures through the paces of the story, as an off-camera voice speaks the dialogue.”

John, age 6, watches the monitor with rapt attention. He is autistic, and this is a technique called “video modeling,” used by educators at the New England Center for Children (NECC) in Southborough, Mass., where John and some 200 other autistic kids attend school.

When the video ends, Jen, his teacher, affectionately ruffles his hair and directs him to a table that holds the same Batman toys seen in the video. He is supposed to play with them in exactly the same way, saying the same lines, as he has just been shown.

Normally developing children play by imagining scenarios and acting them out with toys. Kids with autism do not. They have to be taught how to play this way. The goal is for them to understand the concept well enough to expand on their play, using their own imaginations.

Learning New Behaviors, Changing Harmful Ones

Teaching play with video modeling is something new that the NECC is studying. On the staff working with the kids are not only educators, but also researchers, and they report on what happens at the NECC to the scientific community. Video modeling is just one small part of the NECC’s whole approach, called “applied behavioral analysis,” widely regarded as the gold standard in autism treatment.

In the simplest terms, applied behavior analysis offers carrots, with no stick. Children are engaged in learning new behaviors and helped to change disruptive or harmful ones, by constant positive reinforcement. The curriculum at the NECC ranges from the most basic language and social skills to academics and vocational training. “We plug them into that wherever they’re at,” says Rebecca MacDonald, PhD, director of the preschool program, which includes kids aged 3 to 7.

Another new area she is studying is what’s called “joint attention,” an important early step in relating to others. If you were to turn and look at something, a typical child observing you would probably turn to look at it, too. An autistic child would not notice. “It’s one of the hallmarks of autism,” MacDonald tells WebMD. “They tend not to care what you are looking at or thinking.”

To encourage them to care, she will make something interesting or rewarding happen if the child follows her gaze. For example, she’ll activate an electronic toy by remote control if the child looks at it when she does. Improving joint attention behavior won’t make all other social skills fall easily into place. Like video modeling, it’s just one tool used in the intensive work that the NECC does. Kids who attend the school go for 30 hours a week, all year long.

Starting Early
The earlier this kind of work can begin, the better the outcomes tend to be for autistic children. Autism can usually be diagnosed by 18 months of age, but some scientists hope that in the future, a blood test at birth might detect it.

In May 2005, researchers at the University of California, Davis MIND Institute announced that they had found remarkable differences in blood tests of autistic and nonautistic children. The children had different levels of certain proteins in the blood and more of some kinds of immune cells.

“The idea for early detection is not only that you can intervene early, which is beneficial, but there’s the notion that not all children who ultimately have autism are doomed to it at birth,” David Amaral, PhD, research director at the MIND Institute, tells WebMD.

Scientists have speculated that maybe something in the environment makes children who are susceptible to autism develop the disorder. If researchers could identify the trigger, avoiding it might prevent autism.

“In some cases the information might allow full-blown prevention, and in other cases more tailored treatment,” MIND Institute researcher Blythe Corbett, PhD, tells WebMD.

It’s too early, however, to say for sure what the differences seen in the study mean. “We don’t know whether our findings indicate a cause or an effect,” Amaral says.

It may be that the immune system plays a role in some children’s autism, but “there simply is not going to be a single cause,” he says. “In fact, we think of autism not as autism, but as autisms.”

What’s more, the differences may not be specific to autistic children. “You have to show, for example, that it differentiates kids with autism from kids with obsessive-compulsive disorder or attention deficit disorder,” says Eric Hollander, MD, director of the Seaver and New York Autism Center of Excellence at the Mount Sinai School of Medicine in New York City.

Hollander’s own research has shown that a particular trait in the immune systems of autistic kids relates to the severity of repetitive behaviors, a common autism symptom. This same trait has been linked to Tourette’s syndrome and obsessive-compulsive disorder.

Emerging Treatments
Recently, Hollander studied the use of Prozac for treating repetitive behavior in children with autism. Those who took low doses of the drug in liquid form showed better improvement than those who took a placebo. But selective serotonin reuptake inhibitors (SSRIs) like Prozac are not stand-alone treatments for autism.

  • “The treatment of choice for most individuals is an integrated approach,” Hollander tells WebMD.

At the University of California San Francisco, professor Michael Merzenich, PhD, is working on a computer program to teach language skills to autistic kids through what is called “neural retraining.” It may sound like science fiction, but it’s not all that speculative.

Scientists have come to understand that the brain is not hardwired, but very flexible, or plastic. There are software programs, such as one called Fast ForWord, that can train the brains of kids with impaired language ability to process speech better.

  • “We have very strong documentation that this kind of brain-plasticity-based training can have an effect,” Merzenich tells WebMD.

But programs that exist now are too complex for many autistic kids to use. “The ways that these programs have been designed for nonautistic children just don’t apply to most autistic children,” Merzenich says.

Once Merzenich and his team finish building their program, they will have to put it through years of rigorous testing, which he says they hope to begin later in 2005.

Although its methods are state of the art, the New England Center for Children prides itself on only applying treatment that is backed up by solid research.

  • “People are faced with a raft of alternative treatments that have no merit,” Vincent Strully Jr., the NECC’s founder and executive director, tells WebMD. He counts special diets, secretin treatment, and mercury detoxification among those.
  • “We’re not claiming any cure,” he says, but the center’s approach makes a difference. “It’s advancing the lives of these kids dramatically.”
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