Living With Autism: Stress on Families

Sources of Stress for Parents

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.

Finances

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 "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.

How to Deal with Stress

Luckily, family members can take action to address the stress that they experience. Accessing services or doing any additional tasks can be overwhelming, considering what parents are already dealing with on a daily basis.

However, remember that it is only by taking action that challenges can be tackled and progress toward solutions made. Below are some suggestions to get started with in enhancing family functioning.

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, you must keep in mind is that even a few minutes a day can make a big difference. Some parents do simple things for themselves such as taking the time to 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 on the autism spectrum have even more of a need to reward themselves because parenting their child can be 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.

Network With Other Families Affected by Autism or Another Disability

It gives us comfort to know that we are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advice from others facing similar challenges and using similar services and supports. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, local ASA chapters and Developmental Disabilities Offices. In addition, there are now online supports available for family members. You can locate these sources of support and many other services in your area by using ASA’s on-line referral database, Autism Source.

Other Strategies to Address Stress

When it comes to reducing stress, be creative. You may want to consider one or more of the following approaches:

• Prayer
• Exercise/yoga
• Deep breathing/relaxation exercises/meditation
• Writing in a journal
• Keeping a daily schedule of things to accomplish
• Joining others in advocacy efforts at the local, state or federal level
• Individual, marital or family counseling

If you or a family member is exhibiting signs of stress, you need to take action. Even if it takes the last bit of energy you have left, getting assistance can only make things better. Yes - waiting lists, burdensome paperwork and bureaucracy can make accessing supports stressful, but in the long run, it will be worth it.

Note: This section was contributed by Adrianne Horowitz, CSW, Director of Family Services for the Eden II Programs for Autistic Children.