Autism in Malawi: Promise’s Story
Promise Makhala was born prematurely on January 9, 2002 at Queen Elizabeth Central Hospital in Malawi. She is now 13 years old but she cannot speak other than mumbling “Mama” and “Dada.” Still, she understands when we verbally communicate with her. For example, if we ask her to get a remote control, she will bring it to us.
Prior to Promise’s autism diagnosis in 2009, we just accepted that she was born with a problem although we did not know exactly what that problem was. We accepted her and treated her as she was.
Autism has affected my life greatly. Promise needs non-stop care and support. We cannot leave her alone in the house which means that one family member must be home with her to take care of her at all times. This has resulted in decreased productivity for our family.
Children born with autism in our communities are often dismissed as mentally-disabled, bewitched, or demon-possessed. As a result of these misconceptions, children with autism are not cared for in a way that meets their specific needs.
At the moment, I do not personally know what causes autism. It is my understanding that it is a brain-related condition or disorder.
There are currently no doctors specializing in autism in Malawi and there are no speech therapists with expertise in autism. The lack of trained medical professionals specializing in autism prompted me to establish a charity organization called Hope for Autism Foundation in Malawi.
The aims of this organization are to address the growing need to assist children and their families affected by Autism Spectrum Disorders (ASD) in Malawi; to help families obtain appropriate care, treatment, and educational support; to assist with the cost of education and physical, occupational, and speech therapies; to provide other care and support for children and families; to help parents learn how to better support and teach their children; and to help families obtain other services specific to the needs of their child.
There is much that needs to be done to improve autism services in Malawi. Although there is a school where children with autism can go and learn, we lack specialists who are qualified to conduct comprehensive assessments of children with autism to determine realistic educational placement and programming. We also lack clinical psychologists, speech therapists, and teachers specializing in working with children with autism.
Meanwhile, the diagnostic process for autism in Malawi is very poor. It took us about seven years to ascertain that Promise had autism. This is simply not acceptable. We need an autism centre where parents can bring children suspected of having autism.
Autism is clearly a problem in Malawi and my daughter, Promise, is a living testimony. It is very unfortunate that I have not been able to do enough to help her due to financial constraints.
Our new organization needs assistance gaining ground and fighting autism in Malawi. There is a need for more awareness campaigns in Malawi. There is a need to train specific teachers to teach children with autism. In addition, there is a need to build capacity in autism services in Malawi.
Hope for Autism Foundation in Malawi
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.