Our goal is to simplify the information gathering and evaluating process. Our approach is to provide multiple perspectives from leading authorities and varies websites on autism related topics. This will provide our readers the opportunity to gather multiple viewpoints from a single location and form the best-educated decisions for their family’s needs.
Disclaimer: The Autism Resource Foundation provides general information to the autism community. The information comes from a variety of sources, and the Autism Resource Foundation does not independently verify any of it, nor does it necessarily reflect the views and/or opinions of the Autism Resource Foundation. Nothing on this website should be construed as medical advice. Always consult your doctor regarding the needs of your family.
Deficits and Behaviors of Autism. Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the distinct characteristics that individuals with autism exhibit. An individual with autism may not be able to express their basic wants or needs. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When the parent cannot determine their child’s needs, both are left feeling frustrated. The child’s frustration can lead to aggressive or self injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning.
A child’s deficits in social skills, such as the lack of appropriate play, are also stressful for families. Individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment. Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these deficits and behaviors are physically exhausting for families and emotionally draining.
However, in families of children with autism this is a challenge. Scheduled dinner times may not be successful due to the child’s inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.Back to Top
Reactions from Society and Feelings of Isolation. Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger’s food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.
Concerns Over Future Care giving. One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try and fight off thinking about the future, these thoughts and worries are still continually present.
Finances. Having a child with autism can drain a family’s resources due to expenses such as evaluations, home programs, and various therapies. Because one parent might give up his or her job because of the care giving demands of raising a child with autism, financial strains may be exacerbated by only having one income to support all of the families’ needs.
Feelings of Grief. Parents of children with autism are grieving the loss of the “typical” child that they expect ed to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (i.e. birthdays, holidays, unending care giving) trigger grief reactions (Worthington, 1994). Experiencing “chronic sorrow” is a psychological stressor that can be frustrating, con fusing and depressing.
Sources of Stress for Siblings
There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of:
- Embarrassment around peers. Jealousy regarding amount of time parents spend with their brother/sister
- Frustration over not being able to engage or get a response from their brother/sister
- Being the target of aggressive behaviors
- Trying to make up for the deficits of their brother/sister
- Concern regarding their parents stress and grief
- Concern over their role in future care giving
Sources of Stress for Grandparents
Like parents, grandparents can grieve over the loss of the “typical” grandchild they expected to have. In addition, grandparents are concerned about the stress and difficult situations they see their children experiencing.
Many grandparents want to help but they often face two obstacles. First, most of them do not have the training in behavior management that is required to handle behavioral episodes. They may offer advice related to their experiences, but these may not be successful for individuals with autism. This can cause parents to become frustrated when they perceive the grandparents as not understanding their situations. Second, grandparents may not be physically able to manage the behaviors of individuals with autism. Grandparents just want to play with their grandchildren and “spoil” them to death. Unfortunately, autism prevents them from achieving either of these desires.
What Can Be Done To Address Family Stress
Luckily, parents can take action to address the stress that they experience. I acknowledge that accessing services or doing any additional tasks can be overwhelming, considering what family members are already dealing with on a daily basis. However, remember that it is only by taking action that challenges can be directly tackled. Below are some suggestions for family members to get started with in enhancing their family functioning.Back to Top
Take Time For Yourself and Other Family Members.
In order to avoid burnout, parents must make time for themselves. Parents often respond to this suggestion by saying that they don’t have any time to do that. However, what you need to keep in mind is that even a few minutes a day can make a difference. Some parents just do such simple things as apply hand lotion or cook their favorite dinners to make themselves feel better. Parents, just like individuals with autism, need rewards in order to be motivated. Parents who have children with autism have even more of a need to reward themselves, because parenting their child is often frustrating and stressful.
In addition to rewarding themselves, family members need to reward one another. Spouses need to acknowledge the hard work that each is achieving. Also remember to thank siblings for watching or helping out their brothers and sisters. It is also important that spouses try to spend some time alone. Again, the quantity of time is not as important as the quality. This may include watching television together when the children are asleep, going out to dinner, or meeting for lunch when the children are in school.
Families may also want to occasionally engage in activities without the individual with autism. This may include mom, dad and the siblings attending an amusement park together. Often families feel guilty not including the individual with autism, but everyone deserves to enjoy time together that is not threatened by the challenges of autism.