You are on page 1of 1

Supports for Siblings of Children with Autism Spectrum Disorder:

Parents Perspectives

Daniel W. Mruzek, Dawn Volger-Elias, Elizabeth Baltus Hebert, Jacalyn Yingling, Beth Russ, Lorena Millan,

Virginia Yanez-Fontenla, & Erin McDermott

University of Rochester Medical Center, Rochester, NY


INTRODUCTION
Autism spectrum disorder (ASD) is a developmental disability characterized
by deficits in social communication and the presence of behavioral
characteristics (American Psychiatric Association, 2013). The CDC reports
a 2%18% chance for parents of a child with ASD to have a second child
who is also affected. Having a sibling with ASD can have both positive and
negative impacts on development, adjustment, and functioning.
There has been evidence of increased psychological problems in siblings
of children with ASD (e.g., Benson & Karlof, 2008, Petalas et al.,
2009). Siblings of children with ASD have been reported by parents to have
more emotional problems and fewer prosocial behaviors than the general
population (Griffith, Hastings, Petalas, 2014). In contrast, there have been
reports of positive effects of having a sibling with ASD, such as increased
prosocial behavior (Nielson et al., 2012). There may be subgroups of
siblings who are at greater risk for emotional and behavioral difficulties at
different points during childhood (Giallo et al., 2014).
Within families there are many factors that likely impact the adjustment
of a child with a sibling who has ASD. This study will examine parents
perceived positive and negative impact of having a sibling with
ASD. Additionally, it will investigate the availability and perceived
helpfulness of school-based supports and resources for siblings of children
with ASD.

Purpose and Objectives


The purpose of this study was to learn about relationships between children
with autism and their siblings and to identify themes about parenting and
sibling relationships for families with a child on the autism spectrum.
Specific research objectives included identification of parents perspectives
on the following topics: (1) Sibling understanding of autism;
(2) Relationship characteristics between siblings; (3) Individual, parenting,
and sibling supports. Data will be used to inform next-step research and
current practices related to the development of sibling supports for families
with a child on the autism spectrum.

Recruitment and Participants


School records were reviewed by the Special Education and Student
Services Director of a rural, upstate NY school district to verify the childs
educational classification of Autism. Diagnosis of ASD was confirmed by
parent/guardian through completion of a participant questionnaire prior to
enrollment in a focus group. Parents/guardians of the children were then
invited by school personnel to participate in the focus group. Participants
included 6 mothers and 2 fathers with school-age children with autism
spectrum disorder (ASD) and one or more additional children (i.e., siblings
aged 2 12; 3 brothers, 9 sisters) representing 7 families (one husband and
wife team participated). All 8 participants self-identified as Caucasian.
Reported highest level of education were the following: 2 high school; 1
some college; 3 college degree; 2 graduate or post professional degree.
Reported marital status were as follows: 6 married, 2 single/divorced/
widowed, 1 had a domestic partner.

METHODS
Qualitative research methods were used to identify themes by
analyzing narrative data gathered through a detailed focus group
discussion with parents of children with ASD and at least one
additional child.
Procedure: A 1.5 hour focus group was conducted in a private meeting
room of the elementary school of the participating school district.
Consent was established and confidentiality maintained per approved
institutional human subjects review board protocol. A brief discussion
guide, developed out of a careful review of current literature on needs
of siblings of children with ASD, as well as by brainstorming sessions
by the investigators, was used to guide the discussion. Focus group was
audio recorded and later transcribed. Topics included parents
perceptions of a) description of family; b) relationships among
siblings; c) positive and negative aspects of having a sibling with
autism; d) suggestions for school and other agents to support parents
and your children. Data were also collected through a questionnaire
about demographics form completed at the close of the session.
Validity: At the beginning of the focus group session, the facilitator
emphasized that all participants experiences and opinions were
considered equally important, and that all were invited to share their
experiences and opinions freely. Participants were reminded that there
are no right or wrong comments in any of the topic areas.
Participants were asked to minimize side discussions so that all
comments could be heard by the researchers. The facilitator adhered
closely to the topic areas identified in the discussion guide, and the
topic areas were also clearly displayed at the front of the room for
added visual support. To aid in subsequent analysis, two separate
researchers maintained handwritten notes throughout the session,
identifying the speaker of each comment. Audio recording was
reviewed for accuracy.
Data Analysis: Qualitative methods were used for data analysis. Upon
completion of the focus group, investigators immediately processed
their initial impressions of potential themes. An interdisciplinary
group of investigators each reviewed the transcript independently for
the identification of initial codes. Transcript was analyzed using Nvivo
10 followed by discussion to identify themes and illustrative quotes.
The investigators reached consensus regarding key themes.

RESULTS
THEME 1

Role of siblings
The role of siblings varied within and across families. Variability in roles seemed to be dependent on factors such as the age difference between
the siblings, behavioral challenges, and other resources available to the family. Identified roles include the following:
-Playmate: Siblings often took on the role of a playmate, which is a typical sibling role in many families. The families did, however, describe
the unique nature of play between their siblings.
Its kind of slow between them but if you find something that they can do together that hes interested in, theyre great. But for the most
part he does his own thing but its coming.
-Caregiver: Parents described the role of caregiver that is often taken on by their child without autism. Some families talked about assigning
their children this role at times, whereas other siblings seemed to naturally take on caregiving within the family.
She almost has taken over the mother position. So she watches him like a hawk. She is, she rides him sometimes terrible. Shell be like
dont do this! and its like, really? Whos the mother here?
-Advocate: Empowered to Educate of others about autism Parents described how having a sibling with autism can have impact on advocacy in
the community.
Shes already been talking to me about how she knows a lot about autism and how she has stuff to contribute to the group.
THEME 2

Level of Understanding of Autism


Level of understanding about autism by peers, teachers and others in the community impacted the siblings.
- Siblings: Good understanding by sibling led them to educate other children; poor understanding led to frustration and anger
She really did not get it. She almost was very angry for a long time because she couldnt understand. She thought he didnt like her.
I think shes kind of intuitively understands that everybodys different so she kind of accepts him for the most part.
- Peers: Poor understanding by children at school led to bullying
There were some boys that started making fun of my daughter. Yeah, it broke my heart. In this class was one of my other daughters best
friends and she spoke up and said Hey, thats not nice. You shouldnt do something like that.
- Broader School Community: Poor understanding by the school community interfered with smooth transitions and consistent expectations for
children with autism.
I think this year the school district took a big step in trying to create more awareness.
THEME 3

Need for Supports


Parents felt that support groups for siblings, such as the nationally known SibShops, were very helpful. There was discussion about how
supporting the sibling can help the whole family.
- Siblings- Enjoy activities designed for all children, including typically developing children and children with ASD
I think support is good for the siblings. It is also good for the parents.
- Parents- Identified need for increased supports in their rural community; long drives made some opportunities undoable. Also, the parents
described the lack of supports and programs in their rural area. Discussion centered on how it was important for parents to share information
with each other, and how that connection would help them to access or find appropriate and innovative resources, especially during transition
years.
A lot of times youre working in isolation trying different things but this would be great for a lot of parents.

Recommendations and Future Directions

This project was supported by a LEND training grant from the


US Maternal and Child Health Bureau

Recommendations and Next Steps: Based on the results of this focus group, it is recommended that school districts and other agencies consider
the following practices: (1) development of structured support groups for siblings; (2) Create increased opportunities for inclusive social and
recreational activities for children with ASD and siblings; (3) Consider carefully the quality of supports for students with ASD as they make
educational transitions, especially those that require new buildings or routines (e.g., start of middle school); (4) educate all students and school
community about ASD and consider including siblings as potential leaders in that process. Additional research, including focus groups, should
include families from a broader range of cultural groups (e.g. urban or suburban district). Next steps may include study of impact of recommended
next steps (above) on well-being of siblings, children with ASD and their families.

Template provided by: posters4research.com