Topics of Worry in Mothers of Children with An Autism Spectrum Disorder or Down Syndrome

Background:  

Parents who have a child with a disability face heightened responsibilities and stressors that require extra energy and may contribute to worry-laden thoughts.

Objectives:

The aim of this study was to identify topics of worry for mothers of children with an autism spectrum disorder (ASD) or Down syndrome (DS).

Methods:  

Mothers of children with an ASD (n = 199) or DS (n = 60) responded to an online questionnaire that assessed their worries. They answered the question, “When you wake up in the middle of the night, what is it that you worry about?” Participants were recruited via advertisements placed in newsletters and on websites of organizations associated with ASD’s and DS.  Data were collected between July of 2006 and February of 2007. Coders identified and reached agreement on qualitative themes.

Results:  

Mothers expressed worries about their child’s safety (e.g. “Is everyone in the house safe? Are the doors locked and alarms on so as I can hear when and if someone opens it…particularly our little runner?”), health, and death (16.2%).  They worried what their own death would mean for their child (6.6%; e.g. “I also have these horrible nightmares where I die in my sleep and no one knows and my son is all alone in the apartment.”).  Mothers described school-related worries (5.4%; e.g. “If something happens to her I need to have a back-up plan and there are few educational situations that are a good match.”) and whether their child would ever be able to live independently. They worried about their child’s adjustment and ability to establish relationships, (7.7%; e.g. “My child will never have a romantic relationship or friends; we will die and he will have nowhere to live and will be stuck in an institution”). 

Mothers also revealed worries unrelated to their child with a disability.  Some concerned daily hassles (24.3%; e.g. “Little things that need to be done the next day”). Finances were a big concern (14.7%); one mother worried, “if we will have enough money to make it through the next few months.” Mothers wrote about work-related tasks (“Having too much work to do - not at home - at work”) and whether they could get things done (6.9%).  Others wrote about their own wellbeing and happiness (12.7%; e.g. “Relationships, when will I ever be non-tired, how can I make it through life.”).

Conclusions:  

Mothers’ responses gave a glimpse of their special experience as a parent of a child with a disability.  However, they hold many roles: as individuals, mothers, wives, friends, and daughters. Those employed outside the home also have to fulfill their work-related responsibilities. They worry about their children and families but also think about their own wellbeing and have maintained their sense of self.  These findings serve as a reminder that these mothers have hopes and problems of their own that go beyond their role as mothers of children with a disability.