Raising a Child With Autism: The Basics
The daily care of a child with
Finding a Balance
It is very easy to allow your child with autism to take control of every aspect of your life. In the book Children With Autism, Carolyn Thorwarth Bruey, PsyD, writes, "Your goal should always be to make your child part of your life, not the center of it."
"In other words," she continues, "do not allow your child's special needs to dominate your life. No child benefits from the exclusive attention of his parents, and the rest of the family suffers if this happens. More than anything, the child with autism needs a strong, healthy family that provides unconditional love, consistency, and structure to his confusing world."
Although every child is unique and the level of autistic tendencies varies widely, there are some factors that have been found to make caring for a child with autism a little easier. The following are some of the most effective ways to help you and your family live with a child with autism.
Establishing a Routine
All children benefit from a consistent routine; however, a routine is often a necessity for a child with autism. Involve all family members in the decision of what the routine should be. Individual needs, temperaments, schedules, and commitments should be considered. The routine allows the child with autism to predict the day's events, which brings him security. Janice, a mother of three boys with autism, ages 19, 10, and 8, says, "I found that a routine helps to keep confusion out of their already confused world. If the routine needs to change, I let them know ahead of time."
Establish a set time for meals, bath, play, activities, shopping, school, friends, and bedtime. Abide by the routine as much as possible. Be sure that family members, friends, teachers, and neighbors are familiar with the routine so they can be supportive.
Sometimes circumstances beyond one's control and the demands of the day interrupt the routine. It is common for the child with autism to protest the change with undesirable behavior, such as screaming, self-inflicted injury, destructive behavior, or verbal attacks. Although the parent understands the reason for the negative behavior, it is important that they respond with the same consistent consequences. Then, return to the routine as soon as possible.
Many experts feel that a consistent environment is the best tool available for children with autism to learn. Consistency in the daily routine, discipline, communication, social interactions, and experiences all contribute to reinforcing their learning environment. Children with autism have trouble transferring what they learn from one experience to another. For example, they may use the proper sign language for drink when they want a drink at school, but may stand in front of the refrigerator and scream when they want a drink at home.
Enforcing the consistency requires a great deal of communication between parents, family members, teachers, and other caregivers. Beth, the mother of two boys with autism, ages 8 and 5, says, "When my youngest son was in the special needs preschool, they used picture cards to help him communicate. They suggested that I make the same picture cards to use at home. This helped us communicate better with each other."
Reinforcing Positive Behavior
Many parents of children with autism do not discipline because they are unprepared to handle the negative behavior. Although there is no magic formula for disciplining any child, many parents believe that behavior modification is most effective in changing the negative behavior of a child with autism. In most cases, if positive behavior is followed with desirable consequences, the child will repeat the behavior in order to gain the reward.
Be very specific when rewarding the child. Verbalize exactly what behavior earned the reward. Instead of saying "Nice job," say "Thank you for picking up the toys." The child will often repeat the comment and be more likely to associate the positive behavior with the praise.
Tangible rewards are sometimes necessary since social interaction is oftentimes undesirable to a child with autism. Privileges, stickers, toys, and tokens can be used as effective rewards. Immediate rewards are usually most effective during the early years, while delayed rewards can be effective with older children. Rewards such as candy are usually effective, but not recommended because they can cause other problems. Janice, the mother of three boys with autism, says that she uses a token system for good behavior. She has a chart for each son on the refrigerator. When she witnesses a good behavior, she allows them to put a sticker on the chart. When her sons accumulate so many stickers, they get a reward, such as a video, toy, or a special treat.
Getting Involved in the Child's Schooling
Investigate the programs in the area and select the one that best meets the needs of your child. It is most common for a community to have home-based, school-based, and private programs available. In the book, Children with Autism: A Parent's Guide , Andrew L. Egel, PhD, outlines specific criteria parents can use to evaluate an educational program for their child with autism. A positive educational program is a key factor in determining the child with autism's future. Therefore, it is important that parents take advantage of early intervention programs, seek out the best schools, and continue to evaluate the educational program in which their child is involved.
Children with autism benefit greatly from early intervention programs. Public Law 99-457 has made it possible for children with special needs to receive services prior to entering kindergarten. Although the programs differ greatly, their main purpose is to assist children in developing skills that will help prepare them for future learning. Many programs also offer services to the parents to teach them techniques that will help their child master specific skills.
In a home-based program the teacher and a variety of therapists will come into the home and work with the child with autism in developing skills in areas such as communication, behavior, and socialization. They often work with the parents as well as the child. The sessions most often last approximately one to two hours per week and are geared toward children age two and younger.
School-based programs are usually taught by licensed special education teachers and therapists and are located in public schools or private facilities. Some programs are restricted to children with special needs, while others integrate children without special needs. The hours of school-based programs are typically 2-3 hours a day, five days a week. These programs usually offer more structured learning activities with a distinct emphasis on socialization. When evaluating a program, consider the following:
- Staff/child ratio
- Availability of learning equipment
- Special services such as speech therapy and physical therapy
- Appropriateness of play areas
- Individual attention given to the child's special needs
- Parent education
Once the child is school age, there are also a variety of programs available to him. Many programs are provided by the public school system and offer a certain degree of mainstreaming, where the child participates in classes with children who do not have special needs. Some programs are held in centers with just students with special needs (possibly just students with autism). Regardless of the location, most school programs offer structured learning activities, specific curriculum goals, individualized instruction, special services, and parent education.
Being an Advocate
Even if the program does not have a structured parent education program, it is important for the parent to be active in the child's education. As mentioned earlier, routine and consistency are necessary for children with autism. It is difficult for this to occur unless the parent and teacher work together. Brenda, the mother of a girl with autism states, "I couldn't have survived without them (teachers). It is difficult to have structure at home, but they taught me specific things to do with her that they were doing at school. It has made a big difference in her behavior at home."
Parents are the greatest advocates a child with autism can have. Becoming informed and staying current on the latest research enables parents to be even more effective. Recent evidence suggests, not surprisingly, that poorer school districts are less likely to have effective programs for children with autism than are wealthier districts. Parents may need to lobby effectively for needed remediation for their children.
"I read everything I can get my hands on," says Valerie, the mother of an 8-year-old boy with autism. "Some of it is valuable and some isn't, but I sort through it with my husband, my son's teacher, and other parents who have children with autism. I want to be informed so I can make the best decisions for my son." Valerie’s approach is important, and her husband’s involvement with their son can also make a difference. While mothers are commonly more heavily involved with education, research suggests that fathers can also play an important role in the educational progress of their children.
Autism Information Center
Centers for Disease Control and Prevention
Autism Society of America
Autism Canada Foundation
Autism Society Canada
Autism Information Center website. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/autism/index.htm. Updated April 30, 2008. Accessed May 5, 2009.
Autism Society of America website. Available at: http://www.autism-society.org/ .
Last reviewed January 2009 by
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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