Running head: AUTISM GENETIC TESTING

Autism genetic Testing: A Qualitative

Study of Awareness, Attitudes, and Experiences among Parents of Children with Autism
Spectrum Disorder

Shonta Carter
University of St. Thomas
EDUC/COUN 6327
Instructor: Catherine Barber

AUTISM GENETIC TESTING

2
Autism genetic Testing: A Qualitative
Study of Awareness, Attitudes, and Experiences among Parents of Children with Autism
Spectrum Disorder
Autism spectrum disorder (ASD) is a disorder that has become common to see within the
school system. Early intervention is essential in order to assist students with developing habits in
order to be able to be successful socially, emotionally, and educationally. There are many
students who have learning disorders and those students severely struggle in a classroom setting.
Several researchers steered a study in which the classroom setting was observed to obtain data to
discover the classroom practices of special education teachers and his or her ability to engage
students in the learning process. Since the No Child Left Behind Act (NCLB, 2001) and the
Individuals with Disabilities Education Improvement Act (IDEA, 2004) obtaining feedback and
knowledge on how to be more effective in the classroom to ensure that the needs of all students
are being met, has been an important factor. In order to receive feedback, an observation had to
take place before any recommendation on how to stimulate the learning environment could
begin. Qualitative studies were performed on the awareness, attitudes, and experiences among
parents of children with autism spectrum disorder. This is beneficial to students with this
disorder, as well as other disorders, however emphasis was put on Autism. Observation was
made in other articles referencing to the four themes related to instructional agreement that
differentiated the teachers and whether or not the teachers were most engaging, highly engaging,
moderately engaging, or low engaging. The four themes were the quality of the instruction,
responsiveness to student needs, socio-emotional climate of the classroom, and the student
autonomy. These are all important factors that should be reviewed, however with early
intervention in reference to autism spectrum disorder will assist the teachers in implementing
strategies that will help teachers and parents implement what the child needs as well as, the

AUTISM GENETIC TESTING

3
teachers teaching effectively, and in order to gauge the effectiveness of the teacher. In order to
receive appropriate data on what the children are doing and how the students are growing, there
must be data to back up and track the growth of the student.
Current Study and Hypothesis
This study gives insight into perspectives regarding ASD genetic testing among parents
of autistic children, which felt the need to conduct a qualitative study approach. Parents with at
least on child diagnosed with ASD were eligible to participate. A snowball sampling technique
was used to recruit a diverse sample of socio-demographic characteristics. An emergent design
was adopted to permit refinement of the interview questions throughout various stages of data
collection, analysis, and interpretation. Many times early intervention can give teachers the
opportunity to come up with a strategic intervention in order to assist the student in his or her
learning environment. Early intervention means better planning on the parents, as well as school
part so that the student could develop positive patterns instead of negative ones that may impede
on his or her learning development. More information on this topic will improve social justice
because more and more students are being diagnosed with Autism. As previously stated early
intervention is the key. Autistic student also have issues with social skills, therefore with early
intervention, and positive role play the student can develop positively. For years there has been
completed research, editing to policies and procedures as well as curriculum training, on how to
service students with learning disabilities in the classroom. Seok, DaCosta, Kinsell, Poggio and
Meyen performed research to see of computer mediated Inter-sensory learning model for
students with learning disabilities would be effective.

Method

AUTISM GENETIC TESTING

4
Participant
There are many identifiers of the students with learning disabilities. By becoming
familiar with these identifiers of the disorder successful intervention and prevention strategies
can be put into place to assist with classroom management skills and enhancement in the
learning process. Many times when research is done emphasis is put on subject areas. Darrow
began a research including a classroom of teachers who taught music, and how all music
educators at some point in time will have a student with a learning disability. Darrows research
puts emphasis on how students with learning disabilities may have a variety of problems that
may or may not limit their academic and social achievement in the music classroom. The degree
of the disability may impede on how fast the student learns, or how difficult the learning process
is for the student. This particular study was conducted in-depth, individual, and semi structured
interviews with 42 parents of autistic children with diverse racial/ethnic backgrounds. All
interviews were audio-taped, transcribed, and coded into major themes and subthemes.
Approximately one-quarter of participants had two or more autistic children, and about half of
them were ethnic/racial minorities. On the basis of previous literature a semi-structured interview
guide was created. Six experts in ASD, genetics/genomics, public health, special education,
and/or qualitative research reviewed and revised the interview question. This was done to
establish a rapport with participants and understand their background, interviews started with a
general question asking parents to describe their experiences with their autistic children.
Interviewees were asked to elicit in-depth responses regarding five topics:

a.
b.
c.
d.

Perceived causes and recurrence risk of ASD

Awareness, attitudes, and experiences regarding ASD genetic testing
Utilization of genetic services
Family planning

AUTISM GENETIC TESTING

5
e. Genetic/genomic education needs.
In this study focus was on parental views and experiences regarding ASD testing.
Measures
I will disseminated recruitment letters and approached potential participants through eight
large autism parent groups/ programs and four professional conferences in Texas. To avoid
redundancy and repetitiveness, 21 participants will be interviewed until data reached theme
saturation.
Design and Procedure
The first two authors will conduct the majority of the interviews, while the remaining two
will be conducted by a graduate assistant. Half of the interviews will be carried out face-to-face,
and the rest were will be done either by telephone or Skype live-cam. Thirty-one interviews will
be in English and 11 in Chinese/ Taiwanese. Interviews will last for 1 hour. All participants will
be requested to sign written consent forms and will be paid US$50 as an incentive. To ensure
data quality and interview consistency, the first two authors will frequently meet to discuss the
data and revised the interview guide as emerging themes developing. All interviews will be
recorded digitally and transcribed into English or Chinese, depending on the language spoken
during the interview. Field notes will be taken during interviews, which will be later used to
supplement the transcriptions for further interpretation and elucidation of the data. A brief
social-demographic survey will be used to collect the information on participants and their
families.
Data Analysis Plan

AUTISM GENETIC TESTING

6
Data will be organized using Nvivo 8.0 software (QSR International Pty, Doncaster,
Australia) to facilitate the coding process and compare reoccurring themes across the
transcription data; the first two authors will employ content analysis to code and discuss the
themes. When divergent coding is emerging, the transcription will be reviewed again to reach an
agreement. I will also further examine the potential differences in identified themes among
different socio-demographic subgroups. A research team in the field of genomics and public
health (one member was an autistic patient) will review and discuss the coding themes with the
authors. This investigator triangulation will contribute to analytic robustness and ensured
multiple perspectives for the findings of the study.

References

AUTISM GENETIC TESTING

7
Seo, S,. Brownell, M., Bishop, A., & Dingle, M. (2008).Beginning Special Education Teachers
Classroom Reading Instruction: Practices That Engage Elementary Students With
Learning Disabilities. Council for Exceptional Children, 75(1), 97-122.
Seok, S., DaCosta, B., Kinsell, C., Poggio, J., &Meyen, E. (2010). Computer-Mediated InterSensory Learning Model for Students with Learning Disabilities. Linking Research &
Practice to Improve Learning, 54(2), 63-71.
Darrow, A. (2012). Students with Learning Disabilities in the Music Classroom. General Music
Today,26(1), 41-43.
Sebag, R. (2010). Behavior Management through Self-Advocacy: A Strategy for Secondary
Students Beyer, B. K. (1988). Developing a thinking skills program. Boston: Allyn and
Bacon, Inc.
Selkirk CG, McCarthy Veach P, Lian F, Schimmenti L, LeRoy BS. Parents perceptions of autism
spectrum disorder etiology and recurrence risk and effects of their perceptions on family
planning: Recommendations for genetic counselors. J Genet Couns2009;18:507519.
Miquel-Verges F, Woods SL, Aucott SW, Boss RD, Sulpar LJ, Donohue PK. Prenatal
consultation with a neonatologist for congenital anomalies: parental
perceptions. Pediatrics2009;124:e573e579.
Mercer L, Creighton S, Holden JJ, Lewis ME. Parental perspectives on the causes of an autism
spectrum disorder in their children. J Genet Couns 2006;15:4150.
Genetic Information Nondiscrimination Act (GINA) of 2008.
<http://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/
PLAW-110publ233.pdf>. Accessed 3 October 2012.