I was poking around on my Facebook page and found this in my ‘Notes’ section from over four years ago (August 2010). I remember posting it, and much of what I have written about in this blog is based on this article, but expanded to give you our personal experience. At the time I found it on the Autism Society of America’s website and remarked in my post that it was refreshing to know that a national website was reflecting what we were dealing with, describing it perfectly. I thought it was worth re-posting on here as well. Its a great summary of a lot of the areas I’ve gone into detail about. If you have family or friends with a child with autism, it’s worth going back to from time to time as a ‘refresher’. Four years later it still rings true for us!
From the Autism Society of America website:
Sources of Stress for Parents dealing with Autism
Stress – something parents in general are all too familiar with. There is the physical stress from carpools, preparing meals, bathing, homework, shopping, and so on. This is compounded by such psychological stressors as parent-child conflicts, not having enough time to complete responsibilities and concern regarding a child’s well-being. When a family has a child on the autism spectrum, unique stressors are added.
Deficits and Behaviors of Autism
Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). An individual with autism may not express their basic wants or needs in a manner that we would expect. Therefore, parents are left playing a guessing game. Is the child crying because he/she is thirsty, hungry, or sick? When parents 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. If a child has deficits in social skills, such as the lack of appropriate play, stress may be increased 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 issues and behaviors are physically exhausting for families and emotionally draining. For families of children on the autism spectrum this can be a particular 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 his/her 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.
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 his/her 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 on the autism spectrum may experience a sense of isolation from their friends, relatives and community.
Concerns Over Future Caregiving
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 to fight off thinking about the future, these thoughts and worries are still continually present.
Having a child on the autism spectrum can drain a family’s resources due to expenses such as evaluations, home programs, and various therapies. The caregiving demands of raising a child with autism may lead one parent to give up his or her job, yet financial strains may be exacerbated by only having one income to support all of the family’s needs.
Feelings of Grief
Parents of children with autism spectrum disorder are grieving the loss of the “typical” child that they expected to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and their family. The feelings of grief that parents experience can be an additional source of stress due to 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 (e.g., birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing ”
With autism so much changes…..and at the same time nothing changes. The items above are as much the same for us today as they were 10 years ago. You get used to it, but that doesn’t mean it gets better. You just get stronger.
Thanks again for reading! Another post coming soon! -Dan