Stress on Families
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 diagnosed with autism, unique stressors are added.
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 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 selfinjurious 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.
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 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 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 caregiving 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 dif ferent events (eg. birthdays, holi days, unending caregiving) trig ger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stres sor 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 caregiving
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.
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.
Access Medicaid Waiver Programs
Under this program, a parent's income is waived when determining eligibility for Medicaid. Participants in this program receive Medicaid and Waiver services. Again, waiver services available vary between states. In addition, not all states provide Medicaid Waiver Services. In the State of New York, there is a high demand for waiver respite and residential habilitation. Residential Habilitation consists of in-home programming for individuals. Contact the Developmental Disabilities Council in your state to obtain additional information or the Health
Care Financing Administration (HCFA).
These programs are geared towards providing services to families who have a child living at home. It is through these programs that families can gain skills, maintain structure for their child and get a break from caregiving. Funding sources for these services vary by state. In addition, some states may not offer such services. Contact the
Developmental Disabilities Council in your state to find out more information regarding these services.
Apply For Financial Resources/ Benefits
Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires or dies. Recipients of this benefit also receive Medicare. Contact your local
Social Security Offices for more information.
Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's income is used to determine eligibility for all applicants under the age of 18. Recipients of this benefit also receive Medicaid. Contact your local Social Security Office to apply.
Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.
Access A Service Coordinator/ Case Manager
Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early
Intervention and State Developmental Disabilities Offices.
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 advise from others struggling with the same challenges. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, autism societies and Developmental Disabilities Offices. In addition, there are now online supports available for family members.
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
Deep breathing / relaxation exercises
Writing in a journal
Keeping a daily schedule of things to accomplish
Advocacy
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 get 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 provided by Adrianne Horowitz, CSW, Director of Family Services for the Eden II Programs for Autistic Children
This website is part of the autism-assembly, this is a coalition of
members of the autistic community who share the common goal of seeking
acceptance for those on the autistic spectrum, who aim to educate about
autism, and who are not seeking a cure for autism. This is part of the
global autism rights movement.
