The hidden struggle: Caregivers' commitment, hope, and support needs in toilet training autistic children in Malaysia and Morocco

Abstract

Toilet training is challenging for autistic children. This is often overlooked and understudied. This invisible problem comes with challenges for parents, particularly in low-resource countries. This study aimed to address the toilet training practices of autistic children in Malaysia and Morocco. Caregivers’ needs, challenges, strategies to overcome these challenges, and cultural factors that might play a role were explored in seven focus groups in Malaysia and Morocco with parents of autistic children. Five key themes emerged from these focus groups: parents’ motivation for toilet training, prerequisites for successful toilet training, environmental factors (including cultural aspects), training techniques, and the impact on caregivers. The results showed that toilet training in Malaysia and Morocco was influenced by cultural norms and environmental factors. The experienced challenges impacted parents’ mental health. Stigma discouraged but also motivated parents to continue toilet training. Strategies included seeking advice, cultural adaptations, and support from extended family members. For these parents, culturally relevant resources could be tailored and enhanced to improve the toilet training experience.