Family Preferences and Values in the Treatment Process

As a parent, you are the expert on your child. You know his or her likes and dislikes, strengths and needs, struggles and successes. You have learned — through experience, trial and error, and instinct — what helps your child feel calm, happy, and secure.

You are also your child’s strongest advocate in the goal of developing the skills he or she needs to live an enjoyable, successful life. You should feel comfortable having a strong voice in decisions concerning your child’s treatment. And the values your family holds can and should influence this process.

The term “family values” takes on a specific meaning in the context of raising a child with ASD. Think of a family’s values as the unique preferences or concerns that individuals with ASD — and/or their family members — bring to the discussion about treatment. Family values should have direct bearing as you select skills and behaviors to target, and as you identify appropriate treatments to help your child reach his or her potential and/or enhance the family experience.

For example, your family may value attending worship services together. If so, your goals for your child’s treatment could include learning to sit or kneel quietly in a church, temple, mosque, or other worship setting fora specified period of time, understanding and following the content of a religious service, or participating in various aspects of the service. Other families may value spending time outdoors together. For them, working on leisure activities such as hiking or playing kickball may become a focus of treatment.

Cultural Variables
Family values and preferences are influenced by cultural variables. Therefore, treatment goals and strategies for your child should be congruent with your family’s cultural values. It’s important that your voice is heard when decisions are being made, and that members of your child’s treatment team understand your family’s cultural preferences.

Consider the following examples:
Many young students with ASD do not make frequent eye contact like their peers do or, when they do, that eye contact is fleeting. Eye contact is often a treatment target because it is a socially important skill for most individuals in the larger culture of the United States. It is often one of the first skills taught in many research-supported treatment programs that focus on improving attending and responding to adult treatment providers. Yet, in some Native American and Asian American cultures, eye contact with adults is considered a sign of disrespect.

Reducing self-stimulation is also a frequent treatment goal for children with ASD. However, these behaviors are largely ignored by Navajo parents of children with disabilities. Navajo parents tend to focus more on the strengths of their children rather than behavioral excesses or deficits.
In each of these cases, the values of the family may play a very important role in the decision to target these behaviors for change. If the child can make progress without targeting eye contact or self-stimulatory behaviors, there is no reason for these behaviors to be altered, especially given the cultural values and preferences of the family.

Family Structure
The composition of your family may also influence your values and preferences about treatment for your child. For example, your child’s grandparents may take an active role in his or her care and well-being. It is not uncommon for parents to feel pressured by relatives to modify the intervention strategies used to help the child with ASD. Some extended family members may deny the fact that the child is on the autism spectrum, whereas others impose their views about child-rearing when the family is already experiencing distress. Regardless of the support or challenges offered by extended families, it may be helpful for you to seek out resources that support grandparent involvement.

Families raising a child with ASD along with typically developing siblings face a unique set of challenges. Some siblings do not understand why their brother or sister doesn’t play with them. Other siblings need to learn strategies for managing the stress when classmates make fun of the child with ASD. Older siblings may need help and guidance as they grapple with the possibility of having to be a lifelong protector for their sibling on the spectrum. As a result, you might seek out resources that provide sibling support. The structure of your family may influence your selection of specific treatment goals for your child on the spectrum or therapy for other family members.

Other Factors
Other considerations that may influence your family values and preferences include work and career issues, financial factors, and available community resources. For example, your job requirements may impact the amount of time you have available to participate in your child’s treatment program. Or, as is the case in some two-parent households, one parent may choose to stay home to coordinate the various services that are required for the child with ASD. A mother or father may also make the decision to stay home because no childcare is available, or may become one of the primary out- of-school “therapists” for their child. Complicating matters still further, it’s not unusual for parents to have more than one child with some type of disability or educational need. In this case, the stress is increased as you work to ensure that each of your children receives sufficient support. The choice for one parent to stay home can be a double-edged sword. Although it resolves some issues, it may create others (such as limited financial resources).

Financial factors may influence a family’s ability to purchase prescribed medications, provide transportation to appointments, or buy materials to support a child’s skill development at home. Community factors such as access to trained professionals, support services for individuals with disabilities, and family support services must also be considered both in terms of the quality of services that are available and the costs to the family. It’s important to remember that these services may help the family function more effectively as a unit, and that the financial cost may be vastly outweighed by the gain in general well-being among family members but this is not necessarily the case.

Military families face a unique set of employment issues. For example, when military personnel are sent overseas or are on duty at an undisclosed location, the entire family is missing one parent. The child with ASD, his siblings, and the remaining parent are all left with more limited support under stressful conditions. In addition, because military families are often required to move frequently, the parent who remains behind may lack a well-established network of friends or extended family.

Given the many factors that may influence your current levels of stress, or your capacity to participate in certain treatments, your values and preferences may change over time. A treatment goal that would seem essential under different circumstances may suddenly get moved into an “important in the long run but not today” category. You should voice your concerns if and when your child’s needs and/or the needs of the family change. The professionals working with you may also voice their concerns. This dialogue
is vitally important to ensure that critical goals are being addressed, and that the strategies used are both feasible and effective.

Providing families with a voice in the educational and treatment process is often called “family-centered care.” We know that active family involvement leads to better outcomes.