Parents of children with autism are at the front lines of the challenges posed by autism. They are confronted with added responsibilities associated with parenting a child with autism. These parents are in the seemingly unending position of helping their child learn vital skills (e.g., social, language, etc.) and, in some instances, decreasing problem behavior. This task can appear insurmountable, while also tending to everyday household tasks such a making meals, doing laundry, cleaning the house, and shopping in the community. As a result, parents of children with autism can have increased stress levels. This stress can have a negative impact on parents, such as fatigue, heightened emotional responses, and giving “easy” responses to child problem behavior (e.g., giving a child candy in the supermarket when he begins to get upset). Stress can also affect the entire family. The anticipation of child problem behavior can lead to changes in daily plans or a restricted range of family activities. Autism has been recognized as breaking up marriages, draining bank accounts, and disrupting parents’ sleep. For parents, the circumstance might seem daunting, the challenges might seem great, but with support, optimism, and collaboration with professionals, the potential for improvement is great for the child and the entire family.
Parents are in the best position to confront autism when they have support and they are not facing it alone. Support can come from a number of different sources, including family members, friends, support groups, religious affiliations, daycare, and professionals. These supports can serve different purposes. The primary role of professional support is to teach children skills, address a problem area (e.g., behavior), and pass skills on to parents. There are often many professionals working with a single child with autism, both at home and at school. In order to work successfully with a child parents must be involved and incorporated on some level. Unfortunately, these efforts are sometimes uncoordinated. For example, teachers and/or other professionals often work with a child at home. When these professionals leave that child’s home, parents remain with their child. When parents are unaware of programs and the accompanying teaching procedures, learning opportunities will be lost. A united front between all stakeholders can bring about greater and faster success for a child with autism and his family than professionals and parents working separately.
We know that parents spend more time with their child than anyone else. We also know that children with autism have difficulty applying skills to other aspects of their life (generalization) and holding on to skills over a period of time (maintenance). Taken together, parental engagement as an active “teacher” throughout the day, every day, is critical for their child’s success. Parents need to be equipped to teach their child new skills, to practice recently acquired skills, and to decrease problem behavior. Behavioral parent training helps parents manage the difficulties associated with autism by empowering them with tools to help their child become increasingly independent and to reduce their child’s problem behavior (if necessary). Based on behavior analysis, behavioral parent training provides parents with essential tools such as prompting, reinforcement, and fading. With proper knowledge and guidance, parents can use these tools to develop and implement needed supports to help their child without relying on a professional. For example, parents can develop and implement visual activity schedules and/or positive reinforcement systems after learning how to do so from behavioral parent training. Behavioral parent training would also enable parents to implement teaching procedures when their child returns from school or after professionals have left their home. The net result is that parents are active agents in teaching new skills and promoting generalization and maintenance of learned skills. Sure, parents playing an active role as a “teacher” can seem like another burden placed on an already full plate. In the short term, parents are likely to experience an added stressor to “teach” their child. In the long term, however, the payoff is great. Parenting is like an investment. The more time and effort put in now, the greater the returns later.
Parents must take care of themselves before they can take care of their children. To do this, parents must recognize when they experience stress, how it is manifested, and its possible sources. All parents, especially parents of children with autism, can then benefit from outlets to relieve that stress. Sometimes, it is difficult to find time to relieve or reduce stress. Other times, the typical outlets (e.g., listening to music, exercising, going out with friends, etc.) to relieve stress are simply not enough. In many cases, parents can benefit from learning stress reduction and relaxation techniques from professionals, like deep breathing exercises, breaking down expectations/ goals/ tasks, and cognitive restructuring. We know that thoughts we tell ourselves can increase or decrease stress, depending on the nature of thoughts, and affect our behavior. “The Little Engine that Could” was able to accomplish quite a bit more when she believed with confidence that she could complete the seemingly insurmountable task. Due to its likely impact on parent behavior, the thoughts parents tell themselves can have an impact on their child’s future development. Recent literature (Durand, Hieneman, Clarke, & Zona, 2009) indicated that parents who had negative thoughts about their parenting skills, and not the severity of problem behavior or the child’s cognitive deficits at age 3, was the best predictor of problem behavior three years later. Cognitive restructuring, a component of cognitive behavioral therapy, can relieve parents’ stress levels by changing dysfunctional or unrealistic thought patterns. Cognitive restructuring can also look to improve parenting behaviors by modifying the thoughts parents tell themselves. For example, instead of being rendered inactive by believing thoughts such as, “nothing I do will improve my child and his skills,” “I don’t have time to teach my child new skills,” “my child will be dependent on me forever,” or “my child is like this because of me,” it would serve parents well to view their situation and parenting abilities/potential from a more favorable perspective. Doing so would not only empower them to be even more active in their child’s development, but would also make the involvement more positive and productive.
In summary, by taking care of themselves, parents will be more capable to care for their child, thereby allowing them to manage daily routines. With a united effort between parents and professionals, parents can learn to deal with stress related to autism and, in turn, be better able to teach their child skills that will serve him throughout his life.
Dr. Brian Goldberg is a psychologist and consultant in school districts on Long Island. He is the founder of United Supports for Autism, which is an organization to support families with a child with autism. To learn more about United Supports for Autism, visit www.unitedsupportsforautism.com.
Durand, V.M., Hieneman, M., Clarke, S. & Zona, M. (2009). Optimistic Parenting: Hope and Help for Parents of Challenging Children. In W. Sailor, G. Dunlap, G. Sugai, & R. Horner (eds.) handbook of positive behavior support (issues in child clinical psychology). springer publishing