Introduction
Autism spectrum disorders (ASDs) are neurodevelopmental disorders that affect how people interact, communicate, and behave. The global prevalence of ASDs is increasing, but little is known about the experience of parents of children with autism in Africa, such as Somalia. This study aimed to understand the knowledge on autism of Somali parents of children with autism and their perceptions of causes and treatment of ASD.
Background
The study was conducted by Hodan A. Duale and Abdi Gele, who are researchers from the Department of Social Work and Social Policy at Oslo Metropolitan University in Norway. They published their findings in the journal Child and Adolescent Psychiatry and Mental Health on February 7, 2024.
The authors noted that there is a lack of research on ASDs in Sub-Saharan Africa, especially in Somalia, where there is no official data on the prevalence or incidence of ASDs. They also pointed out that Somalia has experienced decades of civil war, political instability, and humanitarian crises, which have disrupted the health system and affected the access and quality of health care for children with ASDs and their families.
The authors stated that their study was motivated by the need to explore the knowledge and attitudes of Somali parents of children with autism, as well as their experiences of seeking diagnosis and treatment for their children, both in Somalia and abroad. They also wanted to examine the differences between immigrant and nonimmigrant parents, as they hypothesized that immigrant parents may have more exposure and awareness of ASDs than nonimmigrant parents.
Methods
The study used a qualitative approach, involving in-depth interviews with 22 parents of children with autism who lived in Mogadishu and Hargeisa, the two largest cities in Somalia. Of the 22 participants, 9 were returned immigrants who had lived in Western countries for some years before returning to Somalia, and 13 were local people who had never left Somalia. The participants were recruited through snowball sampling, using contacts from local organizations and health facilities that provide services for children with ASDs.
The interviews were conducted in Somali, either face-to-face or via phone, depending on the preference and availability of the participants. The interviews lasted between 45 and 90 minutes and covered topics such as the parents’ understanding of autism, their beliefs about the causes and treatment of ASDs, their experiences of seeking diagnosis and care for their children, and the challenges and barriers they faced in accessing health services and social support. The interviews were audio-recorded, transcribed, and translated into English. The data were analyzed using thematic analysis, a method that involves identifying, coding, and interpreting patterns and themes in the data.
Results
The analysis revealed four main themes: (1) knowledge and awareness of autism, (2) perceived causes of autism, (3) seeking diagnosis and treatment, and (4) stigma and discrimination.
Knowledge and awareness of autism
The results showed that most of the parents had limited or inaccurate knowledge of autism and its symptoms. They often used terms such as “crazy”, “mad”, or “mentally retarded” to describe their children, or referred to autism as a “disease” or an “illness”. They also expressed confusion and uncertainty about the nature and severity of autism, and some of them did not accept or acknowledge the diagnosis of their children.
The results also indicated that there was a difference between immigrant and nonimmigrant parents in terms of their knowledge and awareness of autism. Immigrant parents reported that they had learned about autism from their exposure to Western media, education, and health systems, and that they had more access to information and resources on ASDs than nonimmigrant parents. Nonimmigrant parents, on the other hand, reported that they had little or no exposure to autism, and that they relied on traditional or religious sources of information and guidance.
Perceived causes of autism
The results revealed that most of the parents held the belief that their children’s autism was caused by the measles vaccine. They attributed this to the temporal coincidence between the administration of the vaccine and the onset of the symptoms of autism, as well as the lack of information and communication from the health providers about the vaccine and its possible side effects. Some of the parents also mentioned other possible causes of autism, such as genetic factors, environmental factors, or divine will.
Seeking diagnosis and treatment
The results showed that most of the parents sought diagnosis and treatment for their children from outside Somalia, due to the lack of experience and expertise of the local health providers in the diagnosis and treatment of ASDs. They reported that they had traveled to neighboring countries, such as Kenya, Ethiopia, or Djibouti, or to Western countries, such as Norway, Sweden, or the UK, to seek professional help for their children. They also reported that they had faced various challenges and barriers in accessing health services abroad, such as financial costs, travel difficulties, language barriers, cultural differences, and legal issues.
The results also indicated that some of the parents had tried alternative or complementary forms of treatment for their children, such as traditional or herbal medicine, spiritual or religious healing, or dietary interventions. They reported that they had mixed or negative experiences with these forms of treatment, and that they had not seen any significant improvement in their children’s condition.
Stigma and discrimination
The results revealed that the parents and their children with autism experienced stigma and discrimination from the public, as well as from their relatives and friends. They reported that they had encountered negative attitudes, stereotypes, and prejudices from the people around them, who often blamed, mocked, or isolated them for having a child with autism. They also reported that they had faced difficulties in finding education, employment, or social opportunities for their children, and that they had limited or no support from the government or the community.
Conclusions
The study concluded that there is a need to increase public knowledge and awareness of autism, its causes and treatments, in Somalia, as well as to eliminate the stigma and discrimination that children with autism and their families face. The study also suggested that public health campaigns should be designed to address the vaccine hesitancy that many parents have, and to clarify the relationship between the measles vaccine and autism. Furthermore, the study recommended that health policy makers and service providers should improve the availability and quality of health care for children with ASDs in Somalia, and that they should collaborate with international organizations and experts to enhance their capacity and skills in the diagnosis and treatment of ASDs.
Source:
https://capmh.biomedcentral.com/articles/10.1186/s13034-024-00713-3