An exploration of the experience of Bangladeshi parents of children who have been diagnosed with an Autistic Spectrum Disorder

There is a dearth of research on the experience of South Asian parents with a
child with a diagnosis of an Autistic Spectrum Disorder (ASD). Studies have
demonstrated that services fail to meet the needs of this population to the same
standard as their ‘white’ counterparts. This is further complicated by the
challenge of translating the western concept of ASD to this population where
there is no word for ASD in some Asian languages and translations include
derogatory words such as ‘deformity’ ‘dumb’ or ‘fool’. This qualitative study
explored the experiences of Bangladeshi parents who had a child with a
diagnosis of an ASD. It aimed to explore their subjective experiences of the
assessment, diagnostic and intervention process. It also aimed to explore their
understanding of ASD from a cultural perspective and to see how this impacted
their understanding of their own child’s difficulties.
Two fathers and seven mothers with a child with an ASD participated in semistructured
interviews. Data collection and analysis was guided by Interpretative
Phenomenological Analysis.
The analysis revealed the importance of the role of culture in participants’
understanding of ASD (‘The role of culture’) which showed it could be a help
and/or a hindrance for these families. Participants also described their
experience from first noticing that their child was different to receiving a diagnosis
of an ASD (‘From intuition to diagnosis’). The adjustment to their child’s diagnosis
featured a great deal in the parents’ talk of their experiences (‘Process of
adjustment to ASD diagnosis) and this varied for parents at different points in
time. This seemed to be guided by their ability to cope at these different times
(‘Coping’). Their religious faith, family and friends provided parents with a great
deal of support but they themselves also demonstrated tremendous
perseverance, determination and strength in the face of adversity.
The findings are discussed in relation to other research in this area.
Recommendations are made for how services and their staff can improve the
support they offer these families.