Organization for Autism Research

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FAMILY SUPPORT

Why Family Support is Important
There are an estimated 2,000,000 individuals living with autism in the United States at this time. From this, an assumption can be made that there are somewhere between 6 and 10 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. The benefits, if we do this, are significant and include:

  • Family functioning is less disrupted
  • The preservation of intact families is supported
  • Educational benefits accrue to the child with ASD
  • There are reductions in the use of crisis models of support, and
  • 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 crises in the first place. 

A Functional Definition of Family Support
From an ABA perspective, the term "support" needs to be viewed in the same functional manner as is the term reinforcement.  Just as something can be called a "reinforcer" only if it increases behavior, parent support interventions should only be considered "suport" if they reduce parental stress and/or increase 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:

  • Failure to attend to issues of role clarity and potential conflicts (being a parent versus being a therapist).
  • 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.
  • Home/family issues often grow in complexity as individual’s age and brief parent training sessions may be insufficient to address these new challenges.
  • 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:

  • Restricted access to the group for either or both parents due to such things as distance or lack of competent childcare.
  • The costs associated with accessing specialized child care.
  • The diversity of needs reported by families of children with autism may make it difficult for any one family’s needs to be met.
  • 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:

  • Restricted access to respite services particularly for more rural families.
  • The availability of staff trained to meet the complex needs of learners with autism, particularly in the context of a given family’s home, is generally low.
  • Questions persist regarding the perceived high turnover of respite staff.
  • There are varying degrees of comfort with a service (i.e., having someone in your home) itself.
  • 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.