ment. Therefore, the literature that
considers autism in South Asian families is
scarce.
Ravindran and Myers (2012) reported
that Indian families who have migrated
abroad and have a child with autism are
more likely to use scientific explanations to
understand the ‘cause’ of autism; it was not
within the scope of this research, however, to
explore or explain why these parents might
be more likely to understand it in this way.
Jegatheeson et al. (2010) conducted a
piece of qualitative research to investigate
the experiences of Pakistani and
Bangladeshi parents who have a child with
autism. Although their study was limited to
three families, all of whom live in the US, the
authors gave detailed reports of the negative
experiences these parents had faced. Their
reports of ‘cold and discriminating treatment’
by professionals who did not understand
the family’s needs and were not able to
provide advice and support that was appropriate
to how they lived, gave an indication
of the added complexity of culture in
shaping parents’ experience. The authors
made a clear point that further investigation
is needed to fully understand the needs of
parents from South Asian cultures, especially
as no such research has been conducted in
the UK. Until the present research there has
been no direct exploration of the experiences
of South Asian parents living in the UK
that have a child with autism.
A review of the literature suggests that
although the intersection of South Asian
culture and disability is significant, there has
been a distinct lack of research in this area
and many people treat disabled persons as
‘culture free’. Theories highlight how
culture is a significant factor in informing
construction of disabilities’ such as autism
and, therefore, the experience of individuals
will vary across cultural groups. Although it
has been proposed that South Asian parents
living in the UK are likely to be influenced by
salient beliefs within both South Asian and
UK culture, there remains a lack of research
that considers this directly.
Development of the research focus
Initial ideas for the focus of this research
came from the professional experience of
working as a Learning Support Assistant in
an autism research base, a role which
required close work with children and their
families. During this time it became evident
that there were differences in how parents’
responded to their child’s autism label and
there were significant and unique difficulties
faced by one particular South Asian parent.
At various times she discussed how she felt
her experiences were different to other
parents who had a child with autism, for
example she identified some of the challenges
she faced within her culture and how
she was finding people close to her unwilling
to accept her son’s autism label.
In preparing to carry out this research,
and taking this experience forwards, the
next step was to meet with professionals to
discuss their experiences of working with
South Asian parents and families; where it
soon became clear an overwhelmingly
problem-focused narrative was discovered in
their discourse. Many professionals talked
about how these families ‘go underground’
with their problems and they discussed their
concerns about not knowing ‘what they
need, or how to help them’. One professional
talked about ‘…a family I worked with
and I just didn’t know what to do, I could tell
they needed help but I couldn’t get them to
work with me.’ Other professionals talked
about their own perceived inadequacies as
well as their confusion about parents
‘turning down help’.
It became clear that there was a distinct
lack of understanding of the parents’ behaviour
and that professionals were not considering
why parents’ from a particular cultural
group might be less likely to engage with
them than others. With this in mind it was an
explicit aim in this research to try and understand
the parents’ experience from their
own perspective and encourage professionals
to use this as a necessary starting
point for knowing how best to work with
South Asian families. In addition, being of