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ASD in Nigeria: From a Rocky Past to a Promising Future

The statistics on the incidence of ASD in sub-Saharan Africa are scare, but studies coming out of Nigeria have given us a general idea of its prevalence. A 1978 study found that 1 in 145 children in Nigeria have ASD. In clinic-based settings, 0.8-2.3% of child patients have been diagnosed with ASD. Among children with neurodevelopmental delays and/or intellectual disabilities, ASD has been found in around 11.4-34.5% of this population. In addition, in mainstream elementary and secondary schools, around 2.9% of children ages 3-18 have been found to have ASD.

While various countries around the world, such as the US and South Africa, have taken effective measures to enact laws, spread awareness, and provide training for healthcare professionals and educators, Nigeria seems to be stuck in the past where ASD is confused with schizophrenia or MR. Even today, insufficient maternal behavior or religious reasons are identified as causes of ASD in Nigeria. In many parts of the country, especially in rural areas, individuals with ASD are thought to be possessed or evil, and exorcisms are a common form of treatment. They are typically hidden at home or sent to schools for the deaf, blind, and mentally ill. In rural areas, many end up living on the streets and are labeled as "insane."

While the general population is uneducated in regards to ASD, evidence shows that even health professionals are misguided in their knowledge. In 2015, a questionnaire called the Knowledge about Childhood Autism among Health Workers (KCAHW) was given to 175 healthcare workers to assess their knowledge of autism. This study showed an extremely low level of ASD knowledge amongst health care workers, with most only knowing signs of “infantile autism.” Most were not aware that ASD occurs on a spectrum and that there are different types of autism spectrum disorders. Even more upsetting was the fact that virtually none of these professionals knew where to refer these cases. As a result of this limited awareness, many children are misdiagnosed or not diagnosed at all. Many medical doctors in Nigeria say that ASD is rare and foreign and some even refer to it as “Oyibo Wahala” (a mix of Nigerian pidgin and Igbo meaning “white man’s problem”). Instead of a multidisciplinary team working together to develop personalized education and health plans for children with ASD, Nigerian parents often go to multiple professionals and get multiple conflicting opinions.

Grassroots Efforts

In order to effectively combat the issue of misinformation and unawareness, many parent and professional-led organizations were created. Nobelova Gradani is an organization in Lagos, Nigeria that was established to help professionals who work with children with special needs meet credentialing needs. They have helped train and educate professionals that work with individuals with ASD in Nigeria. Since 2012, this organization has set up awareness programs in schools, targeting elementary schools around Lagos and setting up awareness efforts with teachers and parents. They have set up screening of at-risk children in schools and to date, have been able to screen over 5,000 children in 32 elementary schools in Lagos, of which 40 are currently receiving intervention services. They have also put resources into training service providers, including those with experience in child-care and education such as pediatric nurses, social workers, therapists, child psychiatrists, and behavior analysts. Other organizations include a coalition of parents and professionals called Autism Associates, a campaign for early diagnoses and detection of ASD. They have also aided with the formation of CADD (Centre for Autism and Developmental Disabilities), contributing to research, training, and advocacy.

CADD in the Delta State of Nigeria

Legal Progress

For a long time, there had been no legislation in Nigeria directed at guiding or mandating services for individuals with ASD specifically, even though it is the fastest growing developmental disability. On January 23, 2019, Muhammadu Buhari, the president of Nigeria, signed the Discrimination Against Persons with Disabilities Act after nine years of relentless efforts of advocacy groups. The law prohibits discrimination against those with disabilities and imposes fines and prison sentences for those who do not abide. The law will also establish a National Commission for Persons with Disabilities and will help people with disabilities gain access to housing, education, and healthcare. While these are good first steps, the Nigerian government must make sure that these measures are implemented across the country, especially in rural areas, with a specific focus on educating parents and communities about ASD. Without removing the stigma surrounding ASD, these efforts will ultimately not be productive for either individuals with ASD or society as a whole.

Muhammadu Buhari signing the Discrimination Against Persons with Disabilities Act in 2019

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