Why Family Support is Needed

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FAMILY SUPPORT

Why Family Support is Important

There are an estimated 500,000 to 1,000,000 (ASA, 2002) individuals

living with autism in the United States at this time. From this, an assumption

can be made that there are somewhere between 2-6 million immediate family

members of people with autism and innumerable extended family members living

with or around them. Each one of these individuals may, at different times in

their lives, experience a significant degree of stress associated with meeting

the complex and idiosyncratic challenges of having a family member with autism.

In order to address this need, systems of family support need to be available,

individualized, flexible, and relevant to the needs of individual families at a

given point in time. In other words, family support models need to be based on

a functional analytic perspective of family needs across the life span (Cutler &

Kozloff, 1987). The benefits, if we do this, are significant and include:

a.. Family functioning is less disrupted

b.. The preservation of intact families is supported

c.. Educational benefits accrue to the child with ASD

d.. There are reductions in the use of crisis models of support,

and

e.. There is the potential for long-term cost savings as we shift

from a " crisis intervention " model of family support to one based upon

preventing crisis's in the first place.

A Functional Definition of Family Support

From a behavior analytic perspective, the term support needs to be

viewed in the same functional manner as are the terms reinforcement or

punishment. Just as stimuli associated with these terms are defined solely by

their impact (increase or decrease) on a behavior, parent support interventions

need to be defined solely by their impact on parental stress and adaptation. In

other words, what is support to one may be stress to another.

Models of Family Support - Parent Training

Parent training is generally regarded as integral to successful

adaptation (e.g. Koegel & Koegel, 1995) to the birth of a child with autism but,

over time, some of the initial benefits may wane. Some of the challenges that

may impact the " support " component of parent training may include:

a.. Failure to attend to issues of role clarity and potential

conflicts (being a parent versus being a therapist).

b.. The development of a disproportionate sharing of training

responsibilities between both parents so that one parent, (often the mother) is

forced to adopt a " senior trainer " position.

c.. Home/family issues often grow in complexity as individual's

age and brief parent training sessions may be insufficient to address these new

challenges.

d.. Training needs to be specifically tailored to each individual

family's situation and, as such, may require greater resources than may be

available.

Models of Family Support - Parent Support Groups

Parent support groups may provide attendees with several benefits

including, " 1) alleviating loneliness and isolation [and] 2) providing

information [ ] " (Seligman & Darling, 1989, p. 44). However, challenges to

support component of such groups may include:

a.. Restricted access to the group for either or both parents due

to such things as distance or lack of competent childcare.

b.. The costs associated with accessing specialized child care.

c.. The diversity of needs reported by families of children with

autism may make it difficult for any one family's needs to be met.

d.. The competence of the facilitator may vary from group to

group.

However, some recent reports (e.g., Hsiung, 2000; Wellman, Haase,

Witte & Hampton, 2000) indicate that access to the internet and on-line support

groups may help reduce the impact of some of these challenges

Models of Family Support - Respite Services

Respite services are designed to provide families a regularly

scheduled break (respite) from the demands of being primary caretaker for their

child with a developmental disability (Abelson, 1999). When consistently

available and provided by trained staff, respite services can provide some much

needed support. Potential challenges to the support component of respite,

however, may include:

a.. Restricted access to respite services particularly for more

rural families.

b.. The availability of staff trained to meet the complex the

needs of learners with autism, particularly in the context of a given family's

home, is generally low.

c.. Questions persist regarding the perceived high turnover of

respite staff.

d.. There are varying degrees of comfort with a service (i.e.,

having someone in your home) itself.

e.. Funding for respite varies from state to state and, at times,

from county to county to within a state.

Models of Family Support - Integrated Models of Family Support

Integrated models of family support (e.g., Turnbull & Turnbull,

1997) endeavor to provide services as a function of family characteristics,

interactions, functions, and life cycle. Under this model, families are able to

choose from a variety of supports (in or out of home respite, family training,

support groups, monetary vouchers, etc.) that best meet their needs at a given

point in time. While limitations such as cost or availability may be

significant, the ability of families to choose from a menu of individual

services based upon their perception of need would appear to be congruent with

our previous, functional definition of support resulting in decreased stress and

increased accommodation, satisfaction and happiness.

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