Raising autistic children remains a challenge for many parents, as society often judges and questions their nurturing based on the children’s behaviour. This leaves many parents devastated and sometimes leads them to hide their kids from outsiders.
Ange Akimana knows the challenges, as a parent with an autistic child at Autisme Rwanda. “For those wondering if parents of autistic children willingly showcase them to society, the answer is no, and it’s very challenging. Initially, having a child with autism can feel like a personal failure.”
In a video posted on X (former Twitter) on January 10 by Autisme Rwanda, an NGO that supports children and youth with autism spectrum disorders, and raises awareness to promote a concrete, positive, and innovative approach throughout Rwanda, Akimana said “acceptance is a difficult first-step and being proud of your child is even harder.”
She noted that many parents grapple with their own need for support, and hide their children due to societal judgment, stressing how acceptance is an ongoing struggle as some people name and shame these children.
“I recall a traumatic incident at the hospital where a doctor criticised my parenting, making me feel like a bad parent. Sensitising society about autism is crucial. During the national census, I was asked about having a child with a disability, and the lack of awareness among officials highlights the need for more education,” Akimana said.
Janvier Muhire, a clinical psychologist at mHub Clinic, Kicukiro, explained that autism spectrum is a neurodevelopmental disorder that has effects on the development of an individual.
This condition usually impairs an individual’s ability to carry out ordinary day-to-day functions such as eating, bathing, socialising, and communication.
If detected early, some of these skills can be imparted, improving the individual’s quality of life as they grow into adulthood, he added.
“However, autism is usually misunderstood and misdiagnosed as a mental disorder to the detriment of the autistic child. Many societies in Africa attribute this condition to a curse, evil spirit possession, or sins of the parents which usually leads to stigma. Caregivers and parents will most often hide autistic children from society for fear of judgment. Living with children with autism spectrum disorder (ASD) can affect different aspects of parents’ physical and mental health and quality of life,” Muhire said.
According to Muhire, ASD can have several negative effects on different aspects of the life of a person with the disorder and their family and community. Parents of children with ASD consistently experience higher levels of stress.
“Having a child with ASD generally changes the normal routine life of parents and other family members. In addition to problems with looking after their autistic children, many parents face other problems, such as social isolation and sleeping disturbance.”
Muhire said that raising a child with special needs can impose various financial problems on the family. Costs associated with caregiving increase the financial burden for parents. In the face of these numerous challenges, it is common to have mindful self-compassion.
He recommends that parents seek help because they are not weak but want to remain strong, highlighting that psychologists have a unique ability to provide guidance and support to parents of children with autism.
“We help parents navigate challenging situations and discover new ways to communicate with their children, fostering their growth and boosting their confidence.
“During counselling sessions, we encourage parents to develop goals and strategies for managing worry, frustration, anxiety, hurt, or feeling overwhelmed and misunderstood. Harsh criticisms not only hurt kids but also deeply affect parents. In this regard, we recommend parents to find a professional mental health or professional life coach for mental health well-being assistance,” Muhire urged.
According to Marie-Fidèle Umuhire, a psychiatrist at Kigali Mental Health Referral Centre, Kinyinya, when parents realise that their children have differences from other children, they ask themselves a lot of questions and wonder where they can seek help. “The first thing is to understand that they can go for mental health services to consult and receive information from psychiatrists about the changes they observe in their children.”
She said the essence is to have a medical consultation to respond to their questions as sometimes personal impressions may be wrong. Also, when a medical diagnosis is given, comprehensive care is established.
Umuhire added that parents with autistic children encounter multiple challenges and often feel alone in caring for their children, which weighs heavily on them. For some parents, feeling alone in caring for their children may greatly affect their emotions, behaviour, and so forth–which may result in the development of mental illness as well.
“When parents of children with clinical conditions like autism go for mental health services, they receive support from a multidisciplinary team. The main purpose of this multidisciplinary support is not just to help the child, but also to support the parents as they are the ones who will need to offer this help to their children. The reason why different therapy sessions are needed is to assist them to manage their own emotions and cope with all changes that surround the clinical situation of their children,” Umuhire said.