Authors:
Dr. Yael Karni-Wiesel, Dr. Dana Roth, Dr. Sagit Lev, Dr. Naomi Verbloff-Becker
School of Social Work, Bar-Ilan University, Ramat Gan
Beit Izzi Shapira, Raanana
summary
The study findings indicate a significant decline in the quality of family life and a significant impairment in the mental health of parents of children with autism during wartime, especially in areas of life that depend on external resources – such as leisure and support from services. Risk factors such as low income, proximity to combat zones and evacuation from home exacerbated the distress. On the other hand, the regular functioning of educational frameworks was found to be a key supporter of family resilience, both through direct influence and through improving the mental well-being of parents. The findings emphasize the need to identify and adapt continuous responses to these families – both in routine and emergency situations.
introduction
Children with developmental disabilities tend to be disproportionately affected during disasters, including war. Exposure to war entails loss of routine, disruption of essential services, anxiety, and sometimes displacement – these challenges are magnified when it comes to children with developmental disabilities (Mann et al., 2021).
Children with autism are characterized by high sensitivity to change, communication difficulties, and sometimes even cognitive difficulties. In light of these characteristics, exposure to war events may provoke particularly powerful reactions among children with autism. Indeed, studies indicate that children with autism are particularly vulnerable to emotional and behavioral harm during disasters or war, due, among other things, to difficulty with sensory regulation, high reliance on routine, and difficulty understanding the changing reality around them (Barlev et al., 2023; Eshraghi et al., 2020; Fulton et al., 2020).
Initial findings from Israel, collected following the Hamas attack in October 2023, indicate that children on the autistic spectrum exhibited higher levels of post-traumatic symptoms compared to typically developing children. In addition, their parents – especially mothers – reported a significant increase in the levels of depression, anxiety, and stress they experienced during this period. (Rozenblat et al., 2024) In children with autism, these emotional difficulties are not always expressed verbally, and are sometimes expressed through external behaviors such as tantrums, withdrawal, or restlessness (Adams & Oliver, 2011; Li et al., 2021).
From a systemic-ecological perspective, war constitutes another significant stressor for families who are already dealing with the challenges of raising a child with a disability (Karni-Visel et al., in press). Against the backdrop of this complex vulnerability, it is increasingly important to understand the difficulties, needs, and sources of coping of children with autism and their families during a war of iron swords.
Research objectives
- To examine the family quality of life (FQoL) and mental health of parents of children with autism during wartime.
- To examine which characteristics of the child, parent, family, and environment (including exposure to war-related stressors) are associated with the level of family quality of life during this period.
method
A mixed methods (quantitative and qualitative) study involved 236 parents of children with autism, of whom approximately 90% were mothers. The mean age of the children was 8.8 years. (SD = 4.4) The parents were asked to complete two questionnaires: (1) The Mental Health Inventory MHI-5-5 (Stewart et al., 1988), (2) The Family Quality of Life Questionnaire (Brown et al., 2006) which was adapted for the needs of the current study. This questionnaire examines 9 key areas, which the parent was asked to rate about his/her family as a whole: health; economic well-being; family relationships – which refers to the atmosphere prevailing in the family as a whole, support from other people; support from disability-related services; Interactions with the community – a sense of connection and connection with people and places outside the family framework, studies and preparation for work/career; Leisure – spending and utilizing leisure time with the family; Values-worldview – the source of support from which the family draws strength – personal, spiritual and cultural values.
The study was conducted 29–84 days after the outbreak of the war. Through the questionnaires, parents were asked to report retrospectively (looking back) on the state of the family and their mental health in the period before the outbreak of the war, as well as on their current situation – during the period of fighting itself.
In the qualitative part, parents were asked to answer open-ended questions regarding the experiences, challenges, and coping methods of the child and the family during the war.
Quantitative findings
During the war period, a significant decrease was found in all nine domains of family quality of life (FQoL) of parents of children with autism compared to the pre-war period. The sharpest decrease was recorded in the area of leisure – while the moderate decrease was recorded in the area of support from others. In addition, there was a significant impairment in the mental health of the parents.
Among the characteristics examined, it was found that the child’s level of communication was a positive predictor of the level of family quality of life, while the characteristics of the parents themselves (such as age, marital status, or education) were not found to be significantly related to achieving quality of life. In contrast, high family income was found to have a positive relationship with achieving a higher quality of life. In addition, environmental factors such as proximity to war zones or evacuation from home were found to be associated with a decrease in quality of life. On the other hand, when the child’s educational frameworks functioned regularly (“as usual”), a positive effect was observed on both the parents’ mental health and the family’s quality of life as a whole.
In the multivariate model that was constructed, three central factors were found to predict the level of quality of life during the war: high family income, proper functioning of the educational framework, and better mental health of the parent. It was also found that the educational frameworks had both a direct and indirect effect on quality of life – in that their operation contributed to improving the mental well-being of the parent, which in turn contributed to achieving a higher quality of life in the entire family.
Qualitative findings
The qualitative analysis included family members caring for children with various disabilities. Although a separate analysis was not conducted for family members caring for children with autism, some of the statements that emerged in the study relate uniquely to the challenges of these children. Thus, in the following quote, the parent shares how the war situation affected the mental and functional state of the child with autism, and as a result, his ability to receive an appropriate response to his needs: “My son is on the continuum with difficult emotional regulation. (He) was used to being active. Since the outbreak of the war, there have been concerns about being in crowded places and even going out, so we are only at home, which makes it difficult to meet his needs.” Similarly, another parent emphasized how the emotional consequences of the war on the children were expressed in the intensification of the parents’ financial burden: “There are two children on the continuum at home. Unfortunately, both of them are treated privately by a psychologist twice a week because of the war… It would be better and less stressful if there was subsidized help. Coping is not only emotional/mental but also financial.”
Along with the challenges of caring for children with autism since the beginning of the war, some parents emphasized aspects of coping, ability, and control, as expressed in the following quote:
“My husband has been in the reserves since the beginning of the war. I have two children. A 9-year-old and a 4-year-old on the run. I tried to be everything to him. Also a mother, an occupational therapist, and an emotional therapist. I alone tried to replace all the roles of a medical professional, even a physiotherapist. And I think I succeeded because he returned to the setting more developed than he left.”
Summary
Families of children with autism face significant harm to their quality of life and the mental health of the parent during wartime. The findings emphasize the importance of resources – economic, educational and mental – as critical components for maintaining quality of life in families dealing with disabilities during times of emergency. Restricting the activity of educational frameworks harms family resources and exacerbates the existing vulnerability among families of children with autism. Health and social care professionals are required to identify the unique needs of these families and work to ensure continuity of services and adapted support even in emergency situations.
* In this study, we chose to use terminology based on the principle of “person-first language”, and therefore the phrase “children with autism” is used. However, it is important to note that among certain communities, including some of the autistic population itself, there is a preference for identity-first language such as “autistic children”, which reflects the positive autistic identity.
מקורות:
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