Challenging the Myths and Redressing the Missteps in Family Research Monica Cuskelly University of Queensland, Brisbane, Australia Abstract Families of children with disabilities have been the subject of a number of myths, some of which have been introduced and promulgated by researchers influenced by cultural norms that may incline them to ask questions in particular ways and which may result in the institutionalization of ideas and methods, rather than subjecting established beliefs and perspectives to scrutiny. Only relatively recently, for example, has the conviction that only negative consequences will be experienced by families with a child with a disability been challenged. Research questions and instruments or approaches must allow for positive experiences and outcomes. In addition, often family research has failed to recognize the importance of cultural differences. One example of this can be found in assumptions of the applicability of instruments used in family research across different cultural groups. The capacity of instruments to reflect the constructs being measured must be established before they can be used confidently across cultures. In addition, the relationships between constructs must be tested rather than assumed. Finally, before intervention programs or approaches that have been developed by one culture are adopted or applied to another, their fit with the attitudes, beliefs, and resources of the latter culture should be established. Keywords: culture, family, intellectual disabilities, research INTRODUCTION The families of children with a disability have been the subject of a number of myths, some of which have been introduced and promulgated by researchers. Researchers are influenced by cul- tural norms that may incline them to ask particular questions in particular ways that result in the entrenchment of well-accepted ideas rather than challenges to established beliefs and perspec- tives. This paper identifies a number of ways in which research has contributed to the perpetuation of skewed views of parental functioning in families with a child with a disability and discusses some of the remedies that are beginning to be applied. The assumption that the consequences of caring for a child with a disability is inevitably negative pervaded research on family functioning for many years. The possibility that family members may also experience positive consequences was not even considered. Research focused on identifying negative out- comes, or on establishing who was most at risk in this “at risk” group. There was no possibility for other perspectives to be presented. It has now been established that many families do not experience long-term negative outcomes and many report a range of positive outcomes that they attribute to their child with a disability (Grant, Ramcharan, McGrath, Nolan, & Keady, 1998; Schwartz, 2003). We have often overlooked the experiences and perspectives of family members other than mothers. Even when other family members’ experiences have been reported upon, very often mothers have provided the data. The systemic nature of families has been ignored, and this omission has provided an incomplete understanding of how families function. There has been a failure to acknowledge the diversity of forms that “family” may take, and the focus on mothers makes this failure invisible much of the time. Children with an intel- lectual disability may live with one parent or two, with one or multiple siblings, stepsiblings or none, with grandparents, or have no connection with any family member beyond their nuclear family. This range of possibilities is rarely acknowl- edged; however, the emphasis on family-focused interventions, and the requirements this focus brings, mandates that research reflects the entire range of family forms (among other things) (Harry, 2002). In addition, few longitudinal studies have been conducted to chart changes (and areas of stasis) in family functioning (exceptions include those by Glidden & Jobe, 2006; Hauser-Cram, Warfield, Shonkoff, & Krauss, 2001; Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001), including those brought about by changes to family configurations. The contribution that the etiology of the child’s disability makes to family outcomes has been largely ignored. Hodapp Received February 20, 2009; accepted March 18, 2009 Correspondence: Monica Cuskelly, PhD, Centre of Excellence for Behaviour Support, The University of Queensland, Ipswich Campus, Building 28, 11 Salisbury Road, Ipswich, Q4305 Australia. E-mail: m.cuskelly@uq.edu.au Note: This paper is a precis of an invited keynote address delivered at the 2nd IASSID Asia-Pacific Conference, Singapore, June 27, 2009. Monica Cuskelly is Centre Director at the Centre of Excellence for Behaviour Support, The University of Queensland and Disability Services, Department of Communities. She is also at the School of Education, The University of Queensland, Australia. Journal of Policy and Practice in Intellectual Disabilities Volume 6 Number 2 pp 86–88 June 2009 © 2009 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.