SOCIAL SUPPORT AND AUTISM DISORDERS: MALTESE

PARENTS’ EXPERIENCES

Julie Strunk, PhD., RNJudith Rocchiccioli, PhD., RN

Meredith Karny, Cait Krasowski, Sam Zito

Malta

Geographical Location

Population Demographics

Environmental Issues

Health Concerns

Introduction & Background

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.

Background

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.

Current Research

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).

Research

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.

Study Purpose

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.

Theoretical Framework

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.

Social Cognitive Theory

SCT provides a framework for designing, implementing and

evaluating programs.

Study Methods

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.

Methods (continued)

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?

Results

Difficulties with the Education System “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.”

Lack of Supportive Services “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.”

Unacceptance by Others “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.”

Parental Exhaustion “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.”

“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.”

Overall Theme

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

Conclusion

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.

Recommendations

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)

References 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.