‘How Has This Child Affected Your Life?': Parents' Reports on the Impact of ASD

Background:  Parents of children with ASD consistently report higher levels of parenting distress, aggravation, and depressed mood than parents of children with other developmental disorders (Estes, et al., 2009; Schieve et al., 2010). Less is known about fathers’ experiences in ASD, although they report lower levels of distress than mothers (Herring et al., 2006). To improve models of clinical care, further information is needed on the nature and sources of parenting distress.

Objectives:  To examine parenting experiences, including the nature and sources of parenting distress, in a sample of 532 parents of 297 children who had been referred for an ASD evaluation at a university based autism clinic. The group included 285 mothers, 247 fathers, and 235 mother-father-child trios.

Methods:  221 males and 76 females (Mean Age = 88 months; Range (20 to 398 months) participated in a comprehensive clinical evaluation. Child Best Estimate diagnosis was based on the ADI-R; the Vineland-II; the ADOS; and a standardized cognitive assessment. 

Parents provided written responses to the question: “What effects has this child had on other areas of your life, including marriage, family relations, social relations, work situation, and so forth?”Responses to this question were analyzed using the “cut and sort” method (Ryan & Bernard, 2003). A qualitative coding scheme of 218 specific codes was created and then sorted into 31 themes. Coding was performed using the EZtext coding software (CDC). In addition, a 4-point global stress severity index was created to identify overall stress (1 = Low; 2 = Moderate; 3 = Severe; 4 = Pervasive).  Inter-rater Reliability was established on 10% of the cases; percentage of exact agreement across 3 coders, blind to diagnosis and parent relationship status, was 93%. Every tenth case was triple coded to prevent rater drift.

Results:  Endorsement of each of the 31 themes was examined separately for mothers and fathers. For Mothers, 10 categories exceeded 20% endorsement: Negative Marital Effects (55%); Feelings of Loss and Despair (51%); Difficulties Managing Child Behavior (41%); Coping with Challenge (40%); Exhaustion (34%); Negative Career Effects (31%); Negative Sibling Effects (31%); Strengthening Marital Bond (25%); Increased Isolation (24%); and Received Social Support (22%). For Fathers, 5 categories exceeded 20% endorsement:  Difficulties Managing Child Behavior (36%); Negative Marital Effects (34%); Feelings of Loss and Despair (33%); Coping with Challenge (29%); and Strengthening the Marital Bond (25%).  Global Ratings showed that 49% of mothers experienced Severe to Pervasive Stress while 35% of fathers did so.  At p < .05 with this sample size, a difference of 8.25% is significant. Mothers had a higher endorsement than fathers on 8 of their top 10 themes, excluding only child management and the positive report of marriage strengthening.

Conclusions:  Mothers report higher levels of stress than fathers on every category but difficulty managing child behavior. Additional analyses will examine the relationship between mothers’ and fathers’ reports and child functioning, including calibrated severity scores and ASD diagnostic category, IQ, and adaptive behavior.