Transcript Social Support and Autism Disorders: Maltese Parents* Experiences

Julie Strunk, PhD., RN
Judith Rocchiccioli, PhD., RN
Meredith Karny, Cait Krasowski, Sam Zito
Geographical
Location
Population
Demographics
Environmental
Issues
Health Concerns
The numbers of children diagnosed with Autism
Spectrum Disorder (ASD) is rising and thought to be a
high as 1:110 (Dillenburger et al, 2010).
CDC suggests an increase of 17% since 1990s to
roughly 10 million in 2011 (CDC 2011)
World Health Organization (WHO) describes ASD as
having varying degrees in impairment in
communications skills and social interactions, often
accompanied by restricted, repetitive patterns of
behavior.
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ASDs are life-long developmental disabilities of
varying severity and include autistic disorder,
Asperger’s disorder and pervasive developmental
disorder-not otherwise specified (Lin et al, 2011).
Children with ASD experience delays in speech
and language and may have severe difficulty in
learning language.
Social relatedness is potentially impaired and the
child may make poor eye contact, avoid social
contact and inability to note the perspective of
others.
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Suggests that parents of children with
development disabilities report higher levels of
stress than parents of children with such
difficulties (Benson & Karlof, 2008).
Parents of children with ASP report greater
negative impact of having a child with a
disability than parents with other disorders
such as Down’s syndrome (Smith et al, 2010).
Mothers of children with ASD spent more time
providing care with less leisure time (Smith, et
al 2010).
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Siklos & Kerns (2006) founds that parents of
children with ASD received similar support as
parents with other children with disabilities
but parents of ASD children perceived a
difference in the quality of the support with
ASD parents reporting aggravations from more
of the same agencies.
Parents’ beliefs about receiving adequate
support for them and their child are very
important for successful family adaptation.
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The purpose of this qualitative study was to
assess the Maltese parent’s experience,
knowledge of, use of and current perceptions
of social support for children with ASD on the
tiny island of Malta.
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Social Cognitive Theory (SCT) (Glanz et al,
2012) was selected as the framework for this
study.
SCT is relevant to health communication and
deals with cognitive , emotional aspects and
aspects of behavior for understand behavior
change.
SCT provides ways for new behavioral
research in health educations and welcomes
new insights and understandings from the
social sciences.
SCT provides a framework for
designing, implementing and
evaluating programs.
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Phenomenological study utilized the modified
van Kaam method by Moustakas (1996) with
structured, taped interviews to explore the
lived experiences of parents of a child with
ASD with regard to the phenomenon of social
support
Purposeful sampling method was used to
interview
10 individuals who identified themselves as
having had the experience of parenting a child
with ASD and dealing with support issues.
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Six questions were central to the research:
1. When did you notice that your child was showing
symptoms of autism?
2. How old was your child when he/she was
diagnosed?
3. Do you receive any help?
4. Tell me about a typical day that you spend with
your child?
5. What would make caring for your child easier for
you and your family?
6. Does having a child with autism influence in any
way the functioning of your family?
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Difficulties with the Education System
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“Professionals or technology could be beneficial,
however, the school does not allow for this in their
budget. “
“When teachers are assigned a whole classroom of
children, it becomes difficult to specialize in
individual care. They do not have the background
capable of properly teaching a child with ASD
without disrupting the methods used for the rest of
the classroom.”
“ I feel stupid every year, I have to meet with an
LSA (learning style assistant) and teach her how to
teach my son.”
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Lack of Supportive Services
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“I’ve been told my son had autism in two seconds
and I had to deal with it for the rest of my life. I
wasn’t given social support, no psychology support,
because I was given a speech pathologist and an
OT.”
“ I have to pay for the speech pathologist
privately…..I pay for everything privately…..I only
get support of 18 euro’s a week only. Everything we
have to pay besides the schools.”
“They resist changes a lot in Malta. Everyone wants
to work with his or her own agenda. The school
agenda, speech therapist agenda, OT agenda and
they never see our side as a whole.”
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Unacceptance by Others
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“Autism is very much like a social stigma so parents
many times, they stay back. They don’t search for
the services because they are afraid of the stigma.”
“[Children with autism are] socially unaccepted,
they[people] are scared of the behavior. So they are
looked on as unruly children. Some parents do not
go out, to not been seen as bad parents.”
“Many Maltese do not know anything about ASD,
they judge a child with ASD’s behaviors as a result
of bad parenting.”
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Parental Exhaustion
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“Frankly I have to work three jobs to support the
expenses we ran into and like she said in four
months I received 90 Euros of social benefits and I
spent 50 a week and he had to have three jobs for me
not to work and then we decided we have to share.
Still it’s a lot of pressure on the family and my other
daughter is trying to live to find a life.”
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“You know, this is what I think, we cannot keep
doing stuff which is not our role to do because that is
when we lose. You know, this year I ended up in a
physical exhaustion, I could barely walk, because
every year we are in and out and we are worrying
about him and what he is going to do.”
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The Need for Generalized Education on
Autism
Within the educational system
 Within the supportive services
 Within the general population
 Within the parents of children with autism
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The study assessed parent's experience of receiving
and utilizing social support for children who have
ASD.
It was found that Maltese parents do not perceive that
they receive the appropriate social support systems to
help raise their child with ASD.
Parents have generalized frustration with the lack of
support, unacceptance by others, exhaustion, and
difficulties with the educational system.
There is a need for an organized structure of support
and recognition that ASD is present in their country
and requires attention.
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Increase awareness and acceptance of autism
Increase and improve communication between
parents and school personnel
Increase awareness of support systems
Provide training programs for those who work
with individuals with autism (both in
education and healthcare)
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Benson, P.R., & Karlof, K.L. (2009). Anger, stress proliferation and depressed mood among
parents of children with ASD: a longitudinal replication. Journal of Autism Developmental
Disorder, 39, 350-362.
Centers for Disease Control and Prevention. (2010). Autism spectrum disorders (ASDs).
Retrieved from http://www.cdc.gov/ncbddd/autism/index.html
Dillenburger, K., Keenan, M., Doherty, A., Bryne, T. & Gallagher, S. (2010). Living with
Children Diagnosed with Autistic Spectrum Disorder: Parental and Professional Views. British
Journal of Special Education, 37 (1), 13-23. Doi: 10.1111/j.1467-8578.2010.00455.x
Glanz, K., Rimer, B.K. & Lewis, F.M. (2002). Theory, research and practice. San Francisco, CA:
Wiley & Sons.
Lin, L., Orsmond, G., Coster, W., Cohn, E. (2011). Families of adolescents and adults with
autism spectrum disorders in Taiwan: The role of social support and coping in
familyadaptation and maternal well-being. Research in Autism Spectrum Disorders, 5, 144-156.
Moustakas, C. (1996). Phenomenological research methods. Thousand Oaks, CA: Sage
Publications.
Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with
autism and down syndrome. Journal of Autism & Developmental Disorders, 36(7), 921-933.
Smith, L., Hong, J., Seltzer, M., Greenberg, J., Almeida, D., & Bishop, S. (2010). Daily
experiences among mothers of adolescents and adults with autism spectrum disorder. Journal
of Autism & Developmental Disorders, 40(2), 167-178.