Autism Research Institute (ARI)
Autism National Committee (AUTCOM)
Association for Science in Autism Treatment
What is respite care?
Families caring for a disabled person can be tied down much more than other families.Autistic children are individuals and the amount of supervision autistic children require varies, but in general, there is an extra burden on the parents. This burden can be severe in many cases.
Providing care and supervision can possibly require as much effort as would an additional full-time job.
“Respite” or “respite care” refers to short-term, temporary care provided for people with disabilities such as autism. This care is given so that their families can take a break from the daily routine of caregiving. Unlike child care, respite services may sometimes involve overnight care or care for an extended period.
One of the important purposes of respite is to give family members time and temporary relief from the stress they may experience while providing extra care for a child with autism. This, in turn, can help prevent increased family stress, support family unity, and avoid child abuse and neglect. Respite care enables families to take vacations or just a few hours of time off. Respite is often referred to as a gift of time.
Respite care services can be provided by other families or friends, charitable groups, or even by government agencies. Most programs are managed by affiliates or chapters of national organizations such as The Arc, Easter Seal Society, and United Cerebral Palsy Associations in cooperation with local hotels. Many other programs are provided by local organizations such as churches, schools, and other nonprofit groups. Sometimes families arrange for care with neighbors or other people they know.
The service may consist of providing an experienced caregiver to look after the child for a few hours; others require that the individual come to a day care center or group home set up to take care of the child for a weekend on occasion.
William’s comment:
I wish we used respite. We don’t. Not because we don’t feel stressed. We do. And not because we don’t think that some time alone would help us to relax-we do. Our lives would be a lot easier if we did so. However, we can’t bring ourselves to leave Liam alone. It is very difficult to entrust such a sensitive and dependent child to the care of others.
Respite is often referred to as a gift of time.
How can I tell if my family needs respite care services?
Families with an autistic child can suffer constant stress.
Despite this elevated level of stress, many parents may be reluctant to use a respite program, fearing caregivers will not understand or appropriately care for their child. Some families may even question the need for this type of service. Experts recommend that families of children with autism ask themselves these questions to determine if respite services may be helpful or even necessary:
- Is it difficult to find temporary care for my child?
- Does caring for my child interfere with scheduling appointments or completing personal projects?
- Have the demands of caring for my autistic child left me depressed, saddened, or chronically fatigued?
- Is it important that my spouse and I enjoy an evening alone together without the children?
- Does caring and supervision of my child prevent me from getting regular exercise?
- Does caring and supervision of my child prevent me from maintaining relationships with friends and family?
- If I had appropriate care for my autistic child, would I use the time for a special activity with my other children?
- Am I concerned that in the event of a family emergency, there is no one with whom I would feel secure to leave my child?
- Would I feel comfortable having a trained, caring respite provider care for my child?
- Has the family avoided vacations altogether because of the fear and anxiety associated with traveling with the autistic child?
- Do I avoid going out because I feel I would be imposing on the family and friends who care for my child?
If family members answer “yes” to any of these questions, the family may very well benefit from respite care services.
How are parents with autistic children stressed?
To be a parent is to be stressed. Being responsible for children, their behaviors, and their demands for attention, time, and finances can exceed even the most capable parent’s abilities. An autistic child adds significantly more stress and unique types of stress to any family.
The sources of stress for parents of autistic children include:
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. This is the result of the distinct characteristics of autism. Caring for a person who cannot communicate is highly frustrating. Autistic children may not be able to express their basic wants or needs. They cannot tell their parents if they are hungry, thirsty, bored, in pain, or nauseated.When the parents cannot determine their child’s needs, they feel frustrated and depressed.
The child’s hyperactivity, distractibility, and impulsiveness require a higher level of supervision and physical security and these traits interfere with functioning and learning.Further, this inability to engage in self-directed and appropriate play requires the parents or caregivers to constantly structure the child’s time. This structuring imposes similar structure on the parents and siblings.
Family activities such as meals, sports, movies, or quiet relaxation are all colored by the mood and abilities of the autistic child. Such questions as:
- Will he sit through the whole movie?
- Will she eat what everyone else is eating?
- Will he throw food while our guest is at the table?
- Will the noise at the circus be too loud?
- Will we have to leave early?
- Should we even bother going?
All of these deficits and behaviors are physically exhausting for families and emotionally draining.
Finally, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified people to watch a child with autism in their absence.
Feelings of grief and loss: Parents of children with autism 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 family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. The parents of autistic children experience episodes of grief triggered by different life events such as birthdays, holidays, or the graduation or marriage of a peer or sibling.
Finances: An autistic child makes demands on a parent’s time, emotions, and finances, much more than a typical child does. Expenses such as evaluations, home programs, adapting the home environment, and various therapies can drain a family’s resources. A dual-income family may need to become a single-income family, when one parent gives up his or her job to become the primary caregiver. The specter of future costs of care for an adult child is ever present in the parents’ minds and a constant source of worry.
Reactions from society: While parents can be very accepting of an autistic child’s behavior at home, this same behavior in public may cause them significant stress. People may stare, make comments, or fail to understand any mishaps or misbehaviors that may occur. Autistic children, even when behaving well, may be too loud, too active, and too friendly with strangers.
When frightened, they may scream; when bored or frustrated, they may throw a tantrum. Memories of these public experiences affect family decision making regarding outings, family events, and vacations.
Feelings of isolation: Families may feel uncomfortable taking their child to the homes of friends or relatives.
When there is an obligatory family gathering, such as a holiday, wedding, or funeral, the family’s stress level can soar. Ultimately, the family may feel as though they cannot socialize or relate to others. Isolation from their friends, relatives, and community is common for parents of autistic children.
The future: Even well-adapted, well-functioning, and balanced parents become distressed when they think of the future for their child. They may ask: “Who will care for my child when I am gone? Will they care for him as well as I do? Will they understand the subtle signs she shows when she is sick? Will they give him his or her favorite foods? How will I pay for this care?
Will his siblings have to care for her?” There are no easy answers for these questions, and the worries attendant to them are always in the back of a parent’s mind
To be a parent is to be stressed.
Term:
Respite care – A short period of rest or relief. Parents of a child with a disability may qualify for respite services when a child is cared for by a third party allowing the parent (s) to take care of other needs away from the child, like the needs of themselves or other children in the family.
