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.

Childhood Rise in Autism Cases Real

Since the 1990s, there’s been a dramatic increase in autism (search) among school-age children. The data are from the U.S. Department of Education, and the report hints that the increases seen with time are real.

Research has suggested that the rise in autism could be largely explained by changes in diagnosis, with children who might have been classified as mentally retarded or speech impaired before the 1990s now being classified as autistic. Lead researcher Craig J. Newschaffer, PhD, says the Department of Education figures do not show this, but he adds that the increase in autism may never be fully understood.

“I don’t know if we are ever going to be in a position to explain what has gone on over the last decade,” he says. “The hope is that with the surveillance programs that are now in place we will be in a better position to understand future trends.” Earlier findings from the CDC and others have suggested as much as a tenfold increase in autism and related disorders during the last decade of the 20th century.

The study does not answer the question as to why autism is increasing. But the national data don’t show a decrease in other learning disabilities. Trends for mental retardation (search) and speech and language impairment remained unchanged. This suggests the increase in autism is not the result of an across-the-board increase in special education classification, say the researchers.

Trend May Be Leveling Off
Newschaffer and colleagues from an autism tracking center at the Johns Hopkins Bloomberg School of Public Health analyzed national special education data collected from 1992 to 2001. The findings are reported in the March issue of the journal Pediatrics. The research offers intriguing early evidence that the upward trend in autism cases may be beginning to level off. But Newschaffer cautions that the finding may be misleading.

He says a change in 1997 that allowed children up to the age of 9 to be classified as “developmentally delayed” may explain the apparent leveling of autism cases. Before 1997 the diagnosis was used only for children 5 and under. It is possible, Newschaffer explains, that children with this label who would have been reclassified as autistic after age 5 are now being diagnosed when they are older.

“We will need a few more years of data to determine if the rise in autism is really leveling off,” he says.

Early Diagnosis Is Key
The most recent figures indicate that as many as one in 166 children in the U.S. is autistic or has an autism-related disorder, such as Asperger syndrome. Despite a growing awareness of the importance of early diagnosis, the new report suggests that many children are still being diagnosed at older ages.

Last month, the CDC launched a major public health initiative to promote early diagnosis by raising awareness about child development milestones. “By recognizing the signs of developmental disabilities early, parents can seek effective treatments which can dramatically improve their child’s future,” CDC Director Julie Gerberding, MD, says in a news release.

The focus of the campaign is to get parents to keep track of important developmental milestones such as when their child learns to smile, when they recognize the word “no,” when they learn to speak and play, and how they interact with others. Pediatrician and epidemiologist Marshalyn Yeargin-Allsopp, MD, says the hope is that parents will learn to identify developmental delays as early as possible. Yeargin-Allsopp is conducting an ongoing study of autism prevalence trends for the CDC.

“Parents need to know the signs and bring those signs to the attention of their health care provider,” she says. “After all, parents know their children better than anyone. And providers can’t take a ‘wait-and-see’ attitude. They have to refer a child quickly for diagnostic assessment even if they just suspect a developmental delay so that a child can get intervention services as early as possible, if necessary.”

Early Signs of Autism Identified in Infants

Findings Could Lead to More Effective Treatment. Canadian researchers say they can recognize the early signs of  autism in children as young as 6 months old, and they hope their findings will lead to  better early treatments for the disorder.

In their ongoing study that now includes autism centers across 14 cities in Canada and the U.S., the researchers are following the progression of younger siblings of children with autism.

According to the National Alliance for Autism Research, a child born into a family in which an older child has been diagnosed with autism is 50 times more likely to develop the disorder than a child with no afflicted siblings.

In this study, researchers show that by age 1, siblings who are later diagnosed with autism may be distinguished from other siblings by early developmental behaviors.

“This is groundbreaking work that is pushing the frontier of what we know about the biological nature of autism, and why it emerges so early in life,” says researcher Lonnie Zwaigenbaum, MD, of Ontario’s McMaster University. “Our hope is that it will lead to the development of new and earlier treatments that could make a huge difference for these children.”
High-Risk Kids Followed From Birth

Autism is typically diagnosed in children around the age of 2 or 3 years, but parents often have concerns about developmental delays much earlier. There is strong evidence that autism has its origin in abnormal brain development early in prenatal life, write the authors.

In an effort to better understand the early signs of autism, Zwaigenbaum and colleagues have been observing more than 200 younger siblings of children with autism, many of whom have been followed from birth.

They developed a 16-point observational checklist called the Autism Observational Scale designed to map the development of infants as young as 6 months.

Specific markers include making infrequent eye contact, not smiling in response to smiles from others, and, in older children, exhibiting delayed language skills.

Even as early as 6 months of age, the researchers found that certain behaviors tended to distinguish siblings later diagnosed with autism from siblings who developed normally. These behaviors included passivity and a decreased activity level at 6 months of age, followed by extreme irritability, a tendency to fixate on objects, reduced social interaction, and lack of facial expression.

At 1 year, these same children also tended to have difficulty with language and communication, and they used fewer gestures. Zwaigenbaum noted that almost all of the children in the study who were diagnosed with autism by age 24 months had seven or more of these markers by the time they were a year old.

The findings are reported in the latest issue of the International Journal of Developmental Neuroscience. While the checklist may be useful for recognizing signs of autism in very high-risk children like the ones in the study, its relevance as an observational tool for other children is not yet known.

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