Mothering with Autism: What does research show us

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Parenting a child with autism is pretty unique. It’s important to understand those unique stresses and joys so that families are fully supported. Professionals and researchers have documented how autism, specifically, affects parents. And they are just starting to hone in on how to alleviate some of those issues. Here’s what we’ve found.

All moms struggle with employment and raising children, but mothers with children with autism see their careers impacted more than all other moms. (Sources: Pediatrics, 2012 April and The Social Science Journal, 2010):

  • slightly more than half of moms with a child with autism work fewer hours
  • three out of five do not take job offers because of their child’s autism
  • one-quarter have taken a leave of absence and nearly as many refuse promotions
  • nearly 60 percent have suffered financial problems in the past year
  • in two-parent households, two-thirds of parents say the mother’s work outside the home was most affected
  • on average, mothers of children with autism earn 35% less than the mothers of children with another health limitation and 56% less than the mothers of children with no health limitation
  • they are 6% less likely to be employed and work 7 hours less per week, on average, than mothers of children with no health limitation

Stress is something all parents experience. It’s hard to be a parent, but being a parent to a child with social difficulties seems to raise that level higher. And stress, we know, impacts all arenas of a person’s life. Moms absorb most of that impact. (Sources: Pediatrics, 2007 Feb, J Interllect Diabil Res, 2006 Dec, J Intellect Disabil Res, 2001 Dec)

  • Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%)
  • Child emotional and behavioural problems contributed significantly more to mother stress, parent mental health problems, and perceived family dysfunction than child diagnosis (PDD/non-PDD), delay or gender. Compared with mothers, all fathers reported significantly less stress in relation to parenting their child
  • Mothers with children with autism had higher depression scores than mothers of children with intellectual disability (ID) without autism, who in turn, had higher depression scores than fathers of children with autism, fathers of children with ID without autism, and control mothers and fathers
  • Forty-five per cent of mothers with children with intellectual disability (ID) without autism and 50% of mothers with children with autism had elevated depression scores, compared to 15-21% in the other groups
  • Single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner

Parent education and training seems to be the answer to alleviating some of these issues which also include poor health. (Source: J Autism Dev Disord. Jun 2012)

  • By learning strategies that improve their child’s behavior, many parents may experience reductions in some aspects of parental stress. In particular, this is true when parents are able to develop an increased sense of self-efficacy, and when parent education programs are carefully designed to fit naturally into everyday routines (Hastings and Symes 2002; Moes 1995; Koegel et al. 1996a).
  • This notion is highly relevant to parents of children with autism, as numerous studies suggest significantly high levels of stress in parents of children with autism, exceeding that of parents of children with other developmental disabilities or children with an otherwise poor prognosis (Bitsika and Sharpley 2004; Donenberg and Baker 1993; Sharpley et al. 1997).
  • There appear to be stress profiles for mothers of children with autism that are both severe and consistent across cultural and geographic areas, maternal age, and the child’s functioning level (Koegel et al. 1992a, b) which relate to specific areas of stress around the child’s dependency and management, behaviors that may place limits on family opportunity, and behaviors that suggest prolonged life-span care may be required (Davis and Carter 2008).
  • There are also a variety of stressors that are not necessarily specific to the child’s behavior, such as limited provision of services at the time of diagnosis, and difficulty understanding the disorder (Keen et al. 2010).
  • Given that parent education programs teach parents of children with autism strategies to manage many of the difficult behaviors which are correlated with poorer parent-psychological outcomes and facilitate understanding of the disorder, several studies have noted decreases in parent stress (Moes 1995; Rickards et al. 2007; Singer et al. 2007; Keen et al. 2010; Solomon et al. 2008; Tonge et al. 2006) and improvements in parent affect (Koegel et al. 1996a) following participation in parent education programs.

All this data and analysis of the state of mothering a child with autism seems to mirror what we see in our own lives – both personal and professional. Families living with autism are struggling and mothers, still, struggle the most. One study even links the stress levels of mothers living with autism to that of combat soldiers. But promising new ways to relieve that level of stress are being explored. It is encouraging to see research and interventions shifting focus onto how to help the whole family.

Author: Shannon

Shannon parents a son on the spectrum, lives in MN and writes to stay sane. She is passionate about connecting families to the services that will transform their lives. Read her full bio here.

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