Autistic family pr
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. As you learned in
Chapter 3, 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 for
a 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.
88 } A Parent’s Guide to Evidence-based Practice and Autism
There are many factors that can influence family values, including:
◖◖ Cultural variables
◖◖ Family structure
◖◖ Work and career issues
◖◖ Financial factors and considerations
◖◖ Community factors
Cultural Variables
Family values and preferences are strongly influenced by cultural variables (Connors
& Donnellan, 1998). 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 researchsupported
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 (Lian, 1996; Wilder,
Dyches, Obiakor, & Algozzine, 2004).
◖◖ 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.
National Autism Center { 89
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.