Previously, we discussed the topic of autism in the article, "Is there concordance in attitudes and beliefs
between parents and scientists about autism spectrum disorder?" This week we will be covering the same paper and discussing qualitative research. The
social conditions under this study include examining attitudes of parents and
research scientists regarding both the perceived causes of ASD and which
specific issues should be further researched. The research question
itself along with the description of the social issue is somewhat vague and
open-ended. It would have been better to perhaps stick to one topic, such
as perceived causes of autism. The second part of the research question,
which addresses which specific issues should be researched in the future, is
lacking in clarity and seems too open ended. Overall the research
question is very relevant to social work practice, it is vital that we
understand more about ASD as well as perceptions, stigmas, and what affected
families feel still needs to be addressed.
Since the literature
is less than a year old, it is very current and quite significant in the topic
area of autism. Inductive research is done in this article rather than being of
theoretical framework. They attempted to create a theory of their own based
upon the research being collected. A
qualitative and exploratory study was done as the data was “collected, cleaned, and coded by CSR and entered
into SPSS (SPSS Statistics Grad Pack 22.0) for analysis. Differences between
parents’ and scientists’ responses were assessed via chi-square tests. The
chi-square test of independence was used as we had nominal level variables”
(Fischbach et al, 2016, p. 354).
Initially, participants were chosen
through a data collection site, Simons Simplex Collection, that included 2,756
families involved in 12 university clinics. Each family included one
child with ASD, but neither parents nor siblings are on the autism spectrum
(Fischbach et al, 2016, p. 354). After the families were asked to participate,
1,460 completed the enrollment, and then a probability sample of 554
participants were semi-randomly selected. “As our goal was to have a sample of
500 SSC parents, 554 (the primary caregiver was chosen) were randomly selected
to participate in the study by the SSC@IAN” (Fischbach et al, 2016, p. 354). Of
those selected, 502 completed the interview and survey. As can be seen in
Table 1, the results of the sample were 82%
white and 95% female. The authors were interested in obtaining the attitudes
and beliefs towards ASD from these selected participants.
The design of
the study involved a 72-item survey, conducted using a computer-assisted
telephone interview (CATI). They first conducted a cognitive interview
with 10 parents with a child with ASD. This helped them to “identify any
unclear concepts, questions, or terms; and learn how to make the questionnaire
flow more smoothly for the participant” (Fischbach et al, 2016, p. 354).
After the cognitive interviews, the researchers were able to update the
pattern of the questionnaire to ensure the flow of the questions, and then did
pretests with 20 parents of children with ASD. Although this type of study was
well-balanced and sufficient, we feel that it would be more conducive had they
done intensive interviews, “involving open-ended, relatively unstructured
questioning in which the interviewer seeks in-depth information on the
respondent’s feelings, experiences, and perceptions” (Engel & Schutt,
2014). However, it is much costlier to perform and takes a much longer
amount of time.
The results of the study showed an
actively present disconnect between the beliefs of the research scientists and
parents concerning the cause(s) of ASD. The conclusions do seem in line
with the results as this entire study was designed with intending to show a
need for better communication and understanding between the two groups studied.
There are alternative explanations offered, especially concerning the
parents’ opinions of the cause(s) of ASD. The now infamous and highly
disputed Wakefield et al (1998) study that incorrectly linked vaccinations to
ASD was mentioned as still being a perceived cause of ASD by at least 13% of
the parents and not even one single research scientist. There seems
to be a disconnect surrounding genetics and ASD. The majority of research
scientists and parents acknowledge a genetic component to ASD, even the possibility
of a gene mutation that could be the underlying cause of ASD. Yet many of
the parents still hold on to the belief that ASD is caused by vaccines or other
factors. The researchers explained this by revisiting the stigma that
parents of ASD children still face today, and that of course it becomes easier
to blame something external like a vaccination than to admit that it could be a
part of the parent’s DNA that caused it.
The
external validity could possibly be limited by the fact that the study samples
were primarily white highly educated parents of ASD children with higher IQ’s
than the typical ASD population. In addition, the source of the study’s
funding leaves the research scientists’ preference of a genetic component to
ASD open to bias.
The other main limitation the authors
discuss is derived from sampling techniques, specifically the difficulty in
obtaining true representative samples. They explain that this would be a
long and expensive process due to the fact that so little research exists at
this point.
The study seems to be current
with ethical standards, includes no trade-offs, and it has an appropriate
balance. For any future studies we would highly recommend improving the
sampling methods. ASD is called Autism Spectrum Disorder for a reason,
it’s a massive spectrum. Only surveying parents of ASD children with high
IQ’s (previously referred to as Asperger’s Syndrome) really does not provide
the full picture. There are ASD children on the complete opposite end of
the spectrum, very low functioning, that have been diagnosed at various ages.
We also question the funding source of the entire study, if they had
something to gain from proving a genetic link to ASD then the chance for bias
is too great.
By: Brittany Culley & Whitney Skierski
References:
Engel,
R. J., & Schutt, R. K. (2014). Fundamentals of social work research (2nd
ed.). Thousand Oaks, CA: Sage Publications.
Fischbach, R. L., Harris, M. J., Ballan, M. S.,
Fischbach, G. D., & Link, B. G. (2016). Is there concordance in attitudes
and beliefs between parents and scientists about autism spectrum disorder? Autism, 20(3), 353-363.
Wakefield
AJ, Murch SH, Anthony A, et al. (1998) RETRACTED: Ileal-lymphoid-nodular
hyperplasia, nonspecific colitis, and pervasive developmental disorder in
children. The Lancet, 351(9103):
637–641. Retrieved from http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)11096-0/fulltext
