about what was being discovered and what
needed to be explored further. An important
aim was to identify the main themes
emerging from the data and from these to
identify a core theme to develop an explanatory
framework, or grounded theory.
Findings
Medical construction of autism
Analysis of the data revealed that parents
constructed autism within an over-whelming
medical model perspective. They mainly
understood autism to be a label that had
been diagnosed by a medical practitioner
and therefore they generally focused on
seeking treatment, medication and eventual
cure. The diagnosis process itself was often
described as a ‘medical examination’ which
parents were not involved in.
Some parents discussed how they hoped
autism would one day be curable and
thought that a physiological underlying
‘single cause’ would be identified to subsequently
inform effective treatment options.
A key outcome of this was that this group of
parents generally had very little input from
educational or non-medical practitioners.
This arguably meant there were limited
opportunities for challenges to this dominant
medical model perspective and a lack
of long-term involvement from professional
services after the diagnosis had been given.
Furthermore, whilst many parents spent
large amounts of time researching autism to
learn more about it, they tended to draw
upon sources of information rooted in
medical discourse. This often meant that
they sought information that reinforced
their belief that autism was a medical
condition.
The huge variability within the autism
spectrum led to many parents discrediting
the term altogether, possibly because they
felt that it was so unusual for a medical
condition to be quite so variable in nature
and inconsistent between individuals. Consequently
there was often a strong tendency to
focus on helping their child get over the
condition and in the interim to ‘mask the
problem’ to avoid long-term labelling. There
was an emphasis instead on monitoring the
child’s attainments and academic progress,
as well as signs of continued cognitive development
and functioning. Parents used such
signs of progress as further evidence that
their child had ‘low autism’ meaning autism
in its least severe form.
Cultural values and beliefs underpinning this
construction of autism
To understand this dominant medical model
construction of autism it is important to
consider the frame of reference the parents
were bringing. Many parents discussed that
‘back home’ in the South Asian country they
originated from there was a strong tendency
to highly regard and respect medical advice.
In addition, some parents discussed that the
same social support networks and public
sector services did not exist there and therefore
parents would not expect to receive
involvement from any professionals other
than medics. Parents tended to have a clear
understanding of medical services and a preexisting
tendency to rely on medical knowledge
above other sources of information. By
understanding autism as a medical condition,
parents might have been reframing the
term in a way that makes sense to them, to
help them feel confident and competent in
supporting their child to recover.
In discussions with parents some talked
about their ancestral roots in a ‘Third World
country’ and how this instils a certain type of
family mind-set. By witnessing ‘poverty and
hardship’ in countries where there is no
option for social support or security, parents
discussed a determination to ‘succeed’ and
especially to thrive economically. One parent
said directly that by ‘coming from a poor
country… our main aspirations are money to
bring us success and happiness’. Within this
context it was discussed that having a child
with a disability poses a significant threat to
beliefs such as this, as it would directly challenge
embedded values relating to success
and self-betterment. Many parents understood
autism as a potential barrier to their