Hope and worry in mothers of children with an autism spectrum disorder or Down syndrome Paula L. Ogston a, *, Virginia H. Mackintosh a,b , Barbara J. Myers a a Virginia Commonwealth University, Department of Psychology, 808 W. Franklin St., 23284, Richmond, VA 23225, USA b University of Mary Washington, Department of Psychology, Fredericksburg, VA 22401, USA 1. Introduction 1.1. Background Mothers of children with developmental disabilities face risks to their own health and psychosocial adjustment (Bebko, Konstantareas, & Springer, 1987; Dale, Jahoda, & Knott, 2007; Duarte, Bordin, Yazigi, & Mooney, 2005) and experience heightened levels of stress (Baker-Ericze ´ n, Brookman-Frazee, & Stahmer, 2005; Hastings et al., 2005; Weiss, 2002) in comparison with parents of typically developing children. Parents of children with autism experience higher levels of stress than parents of children with Down syndrome and intellectual disabilities (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Hastings et al., 2005). There are several explanations for this discrepancy. Individuals on the autism spectrum comprise a heterogeneous group, which creates challenges for both parents and professionals. Early on, doctors may be unresponsive to parents’ concerns regarding the development of their children (Dale et al., 2007) and it can take months or years to obtain a diagnosis (Goin-Kochel & Myers, 2005). Meanwhile, the variability in symptoms displayed by those on the autism spectrum precludes a standardized treatment plan (Dale et al., 2007). Parents face the responsibility of utilizing services and obtaining appropriate treatment for their child, despite the absence of a clear guide to the types and quantity of therapies that would be most beneficial. In addition, there is no clearly defined prognosis for children with autism, which creates challenges in terms of planning for the future (Weiss, 2002). These uncertainties are stressful for parents (Ergu ¨ ner-Tekinalp & Akko ¨ k, 2004; Weiss, 2002). In contrast, Down syndrome is typically identifiable at birth based on physical traits and diagnosis can be confirmed through genetic testing. Research in Autism Spectrum Disorders 5 (2011) 1378–1384 ARTICLE INFO Article history: Received 17 January 2011 Received in revised form 19 January 2011 Accepted 19 January 2011 Available online 25 February 2011 Keywords: Hope Worry Mothers Autism spectrum disorder Down syndrome ABSTRACT Mothers of children with an autism spectrum disorder (n = 199) or Down syndrome (n = 60) responded to an online questionnaire that assessed their hope and worry. Findings support previous research suggesting that hope is a protective factor against psychological distress: mothers with higher hope reported lower worry. Mothers who reported lower worry had more education and older children or children who were higher functioning. Those whose children had Down syndrome reported lower future-related worry and higher hope. In response to an open-ended question regarding what they worried about when they woke up at night, mothers’ responses resulted in themes related to themselves as well as to their children and families. ß 2011 Elsevier Ltd. All rights reserved. * Corresponding author. Tel.: +1 517 420 1289. E-mail addresses: ogstonpl@vcu.edu, ogstonpl@vcu.edu (P.L. Ogston), vmackint@umw.edu (V.H. Mackintosh), bmyers@vcu.edu (B.J. Myers). Contents lists available at ScienceDirect Research in Autism Spectrum Disorders Journal homepage: http://ees.elsevier.com/RASD/default.asp 1750-9467/$ – see front matter ß 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.rasd.2011.01.020