Being a Spectrum Mother: A Mixed Methods Study

Background: Parenting a child with autism can be challenging for both parents. Previous work in this area has highlighted quality of life issues for parents of children with Asperger’s syndrome and autism. Mothers in particular have been found to experience significantly more stress with a reduced quality of life. However, little to no work to date far has established the specific needs and the challenges of women who are on the spectrum themselves.

Objectives: In this study, we examine specific experiences and key needs of spectrum mothers in negotiating social expectations, childbirth, everyday parenting, and in accessing health and education services.

Methods: This study included 35 spectrum mothers (with an autism diagnosis or self identified) and 23 non-spectrum mothers. In order to explore issues in open dialogue, varied qualitative methodology featuring focus groups, interviews and questionnaires were used to obtain information on particular issues that each mother faces. Quantitative data were also collected and will be discussed. Key areas of questioning included issues related to pregnancy, being a new mother, development of the child and a discussion on the kind of assistance that would be most helpful.

Results: Qualitative and quantitative data analysis methods were employed.

In the area of pregnancy, key issues identified in the spectrum mothers included:

• Lack of clarity in communication between mothers and healthcare professionals.
• Difficulty with unfamiliar and changing environments.
• The necessity of having to interact with other people, including other mothers, health practitioners and hospital staff.

For spectrum mothers, the challenges of being a new mother included:

• Difficulties in accessing mother and toddler groups.
• Health visitor and other medical checks.
• Confidence in parenting skills in both the practical and emotional aspects of being a parent.

As children grow, spectrum mothers reported:

• Lack of confidence in parenting skills, particularly in the area of emotional responsiveness.
• Difficulties when interacting with teachers, other parents and accessing groups for extracurricular activities for their children.
• Extreme exhaustion.
• Feelings of isolation.
• Fears and realities of being judged, both with and without disclosure of autism status.

Spectrum mothers report that the following would help:

• Autistic-specific advice on pregnancy and childbirth; guidance as a new parent.
• Support for being a good social role model for children, despite individual difficulties.
• Ideas for a daily routine.

Conclusions: The findings from this study underline the specific challenges faced by spectrum mothers. These challenges not only affect spectrum mothers, but also have implications for outcome in children as the spectrum mothers underline worries about how their autism affects their children, such as access to group activities, interactions with other families, real or perceived judgemental attitudes from others and management of the parent-teacher relationship.

Additionally, potential strategies for improving the service provision, proposed by spectrum mothers, are described. It is hoped this study will provide a framework of specific areas of difficulty for spectrum mothers, and that future work will lead to the development and identification of specific support mechanisms for spectrum parents and their children.