Initial Reaction to an Autism Diagnosis of Their Young Child: Findings from Interviews with 15 Mongolian Mothers

Background:  Since its independent status as a democratic nation, Mongolia has worked to improve its educational system. Only recently have the educational needs of children with disabilities come to the nation’s attention. In particular, little information is available about autism.

Objectives:  This study explored the impact of having a child with an autism spectrum disorder (ASD) on mothers and families using phenomonological theory, whereby a phenomenon that is otherwise difficult to explain “is brought to expression” (Gadamer, 1975/2006, p. 131). Two micro-level theories guided the study: (a) the relationship between mothers and their child with ASD and (b) the sociocultural context of Mongolia.

Methods: The study used a set of semi-structured interviews and the Parenting Stress Index (PSI-4; Abidin, 2012). The PSI-4, designed to evaluate the magnitude of stress in the parent–child system, focuses on three domains of stress: child characteristics, parent characteristics, and situational/demographic life stress.

The interviews and administration of the PSI-4 took place in fall of 2016 in Ulaanbaatar, Mongolia's capital. Participants were a group of mothers of children, ranging in age from 2.5 to 5.5, who had been diagnosed in July 2016. The children were enrolled in an NGO focusing on autism.

Interview questions addressed:
Initial response to the diagnosis, including that of the immediate family
Hopes and fears for the child
Changes to family life as a result of the diagnosis of ASD
Presentation of autism to the wider community

Results: Results showed that the mothers’ total stress was within normal limits. However, the child domain in each instance was significantly higher than the parental domain; that is, the child with ASD was the major source of parental stress. In particular, of the seven subscales making up the child domain, distractibility, reinforces parent, mood, and acceptability, received the highest scores.

Findings showed (a) initial fear, (b) recognition of need for more information, (c) gradual acceptance of the diagnosis, and (d) determination, surrounded by varying degrees of hesitancy, to explain ASD to others in hopes of creating understanding and tolerance for the child. Mothers’ hopes centered on their child’s ability to live an independent life; their main worry was what would happen to the child when the parents were no longer around to care for them, given the lack of support and services. Finally, with regard to changes in the family as a result of the ASD diagnosis, most mothers noted that they had become more patient, more family-focused, and less judgmental of others.

Conclusions: While most of these findings are similar to those of similar studies in the United States, what clearly stands out is the added stress and challenge of living in a society where knowledge and understanding of autism is just emerging and services, therefore, limited or nonexistent. One of the keys to relieving parental stress came directly from the mothers. They spoke repeatedly of the need for parent training and further education. Implications for working with families with ASD