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) trigger grief reactions (Worthington, 1994).
Experiencing "chronic sorrow" is a psychological stres sor that can be
frustrating, confusing 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 can prevent
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.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_
(http://www.ssa.gov/reach.htm) 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.