Maternal experience raising girls with autism spectrum disorder: a qualitative study.
BACKGROUND
A growing line of research has sought to characterize the different presentations of autism spectrum disorder (ASD) among boys and girls. Much less is known about maternal experience and mother-child relationship in children with ASD based on child gender. The present qualitative study aimed to investigate the mother-daughter relationship from the perspective of mothers who are raising girls with ASD with normal intelligence and functional verbal communication.


METHODS
Eleven in-depth interviews were conducted with mothers of girls with ASD, ages 10-19 years. Data were analysed in an interactive process commonly used in naturalistic inquiry. Results provide insight into the unique maternal experience of raising a daughter with ASD.


RESULTS
Mothers reported a sense of exclusion from the neurotypical population and male-dominant ASD population and transformation in relationship. Themes identified were skepticism and delayed diagnosis, disbelief from others, lack of information about girls with ASD, higher social demands in adolescence, puberty challenges around hygiene, disappointment about physical appearance, vulnerability in relationships and worries about future functioning. The mother-daughter relationship started with an early expectation of a close and intimate relationship that then underwent a transformation, which challenged maternal competence, reshaped expectations and created a different bond between mother and daughter.


CONCLUSIONS
The findings in this qualitative study highlight the impact of gender on the maternal experience of raising a daughter with ASD and contribute to a better understanding of the needs of both mothers and daughters. These results can help providers support the mother-daughter dyad by recognizing gender-specific challenges.
['Navot|N|N|0000-0003-1321-8669', 'Jorgenson|A G|AG|', 'Webb|S J|SJ|']
D000223:Adaptation, Psychological D000293:Adolescent D000328:Adult D001007:Anxiety D000067877:Autism Spectrum Disorder D002648:Child D057210:Delayed Diagnosis D004644:Emotions D005260:Female D006801:Humans D006920:Hygiene D007398:Interpersonal Relations D009034:Mother-Child Relations D009035:Mothers D009679:Nuclear Family D016487:Parenting D036301:Qualitative Research D012741:Sexual Maturation D012917:Social Adjustment D057545:Social Stigma
maternal experience autism spectrum disorders qualitative mother-daughter relationship females