A Snapshot of Autism In Qatar From the Eyes of Parents/Caregivers

Background: Autism is a neurodevelopmental disorder characterized by delayed or disordered language, social impairment and repetitive or restricted behaviors. Autism imposes great burden on the family. Previous research conducted reported a number of psychosocial problems affecting caregivers of children with autism, ranging from stress, depression, anxiety, restrictions of roles and activities, strain in marital relationships and diminished physical health. To our knowledge, no previous research assessed the burden of parents/caregivers of autistic children in Qatar or the Gulf region. There is undoubtedly need to investigate how caring for children with autism interferes with the lives of the parents/caregivers on a daily routine base and to develop comprehensive care/support strategies in Qatar, not only targeting the individual(s) with autism, but also parents/caregivers who live in direct contact with autism throughout their life.  

Objectives: To provide a snapshot of the status of Autism in Qatar from the eyes of parents and caregivers

Methods: Caregivers of an autistic child who was between the ages of 3-17 years old were recruited from two main developmental pediatric rehabilitation clinics in Qatar. Control group was represented by caregivers of a non-autistic child and who were visiting a family clinic for routine medical check-up. Demographic details were collected in a face-to-face interview setting using pre-tested forms. Information collected from both groups included the number of siblings, number of hours of sleep in a day, number of hours spent watching TV, time spent at home, absenteeism from school, and use of a nanny to care for the child. Information related to the caregiver included schooling level, profession, and other relevant information. In addition, caregivers of autistic children were asked whether they will encourage the child to marry or have children, how accepting they were of having an autistic child, and questions related to the specialized services provided by the health care system or that the caregiver wished to receive. 

Results: Autistic children spent more time indoors, watching TV, or sleeping than children in the control group (p≤0.05). Around 40% of caregivers of autistic children said they would encourage their child to get married and become parent when s/he grows up. Half of the caregivers utilize special education classes and other facilities, and the remaining half has access problems. Around third of caregivers said that they attend special education classes to help them cope, but over 60% said they do not have access to such classes and they wanted to have such facility.

Conclusions: This study provides a snapshot of the status and burden of autism in caregivers of autistic children in Qatar. The fact that young children in the autistic group spent much more time indoors than children in the control group reflects a tendency among caregivers of autistic children to try to keep their children isolated from the outside world because of the perceived lack of social and community understanding of the nature of autism. While a number of caregivers of autistic children seem to utilize specialized services, like special education classes, others did express their needs of these services.