Identifying and Managing Autism Spectrum Disorder among Ugandan American youths

Autism Spectrum Disorder (ASD) is a complex neurological development condition that affects an estimated 1 in 59 children according to the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) network. The network also reports that the prevalence is higher among boys than girls, such that for every 1 girl, there are about 4 boys that are identified with the condition. While there are no clear explanations for these statistics, most scientists agree that certain genes are among the risk factors that can make a person more likely to develop ASD.  Increased awareness about the condition helps with identifying the signs and symptoms earlier. 

Early intervention and having access to the required support services help to significantly improve outcomes for the autistic child, as well as their families and caregivers. ASD can affect how a child learns, interacts socially and communicates. Children with autism sometimes exhibit a combination of the following symptoms in their early years:  

• delayed learning of language 
• difficulty holding a conversation
• limited eye contact 
• difficulty with reasoning and planning
• narrow or peculiar interests
• poor motor skills 
• sensory sensitivities

These are but a few of the characteristics that are exhibited among children with ASD that can sometimes set them apart from children who are considered neuro-typical.  These differences in how children express themselves and interact with others, have caused those with ASD to be labeled as strange or weird, and in some cultures, the children are mistreated.  

British Psychiatrist Dr. Victor Lotter published detailed descriptions of the first cases of autism identified on the African continent, in 1978. Despite the fact that these cases were discussed and presented over 40 years ago, there are certain African countries where the condition is still not widely understood or even recognized as a manageable disability. There have been cases reported where children who show signs of autism are extracted from society, left at home, tied up, hidden and kept away from public view, out of shame and desperation. Families have resorted to these painfully inhumane measures out of ignorance, bowing to societal pressures shrouded in superstition. Oftentimes, local folklore and belief suggest that autistic symptoms are a manifestation of curses, invoked as punishment for immoral behavior. While some of these practices are not as prevalent today as the were previously, there is still much room for improvement, and creating awareness about Autism Spectrum Disorder, is an effective way to ensure that these practices are abandoned completely.

In his address in New York, in December of 2016, Dr. Richard Nduhuura, the permanent representative of Uganda to the UN, discussed the need for bringing awareness to the condition throughout the African continent. Dr. Nduhuura highlighted the fact that due to a lack of awareness about the condition, Ugandans with ASD are being misdiagnosed and mistreated. In some cases people with autism are seen as suffering from the effects of witchcraft, and are therefore confined to facilities ill-equipped to address their needs, where they are either not treated, mistreated, or are given traditional “healing” remedies that often result in brain damage. Dr. Nduhuura further reported that the Ugandan government has taken note of these conditions and, in association with some other organizations with interests in addressing these alarming incidents, have now established new facilities that provide the requisite services for children with autism and other forms of disabilities. These facilities provide diagnostic testing, social training, speech and cognitive behavioral therapy, that will help to equip the affected children to be better able to adapt and function in society. These adjustments, he highlighted, not only support local autism awareness campaigns, but they are also consistent with Article 35.1 in the Ugandan Constitution, which ensures the protection and respect for the rights of persons with disabilities, such that they, too, are able to fully realize their physical and mental potential.

While these are important steps that can help to address some of the concerns about how people (mainly children) with ASD are being managed in Uganda, there is much more that needs to be done to target and erase the stigma associated with ASD among Ugandan Americans. Even today, here in the United States, there are still some who tend to fall back on ill-informed stereotypical ideas about autism spectrum disorder among our youths.  

One of the main goals of the Ugandan American Council (UAC) is to drive awareness about Autism Spectrum Disorder, and how it affects our youth and families. The UAC also aims to help to educate our community about ways to identify and care for those who are diagnosed with ASD, while dispelling myths and stereotypes that could potentially harm those living with the condition. The UAC seeks to help parents identify the signs and symptoms of ASD early, and provide the educational resources that might help children receive the appropriate medical and therapeutic attention they need. We aim to help improve the quality of life of those living with ASD and allow them to develop skills that will help them integrate and function in society.