Rethinking Autism: Bridging gaps in care, culture and understanding

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects how individuals perceive the world and interact with others through communication and socializing. It is characterized by differences in social communication, repetitive behaviors, restricted interests, and sensory sensitivities. Autism is referred to as a spectrum because every individual presents differently with their unique strengths and challenges. Some individuals manage independently while others may require significant support in their daily lives. Autism is not a disease to be cured but a lifelong condition that influences an individual’s engagement with their environment.

While global awareness about autism has gained momentum over the past few decades, in Kenya, the journey is still in its early stages. Misconceptions, misinformation, stigma, and limited access to care continue to shape how autism is understood within our communities, posing challenges to families with autistic children. The causes of autism are still being studied, with scientific evidence pointing to a potential link to a mix of genetic and environmental factors.

A strong genetic link exists with autism running in families, and studies have found multiple genes associated with the condition. Spontaneous (de novo, not inherited) changes in known neurodevelopmental disorder genes, such as DDX3X, GRIN2B, among others, are associated with autism and other developmental conditions, such as intellectual disability and attention deficit hyperactivity disorder (ADHD). Researchers have also identified possible environmental influences, like medical factors, such as prenatal exposure to certain infections, birth complications, and use of certain medications such as sodium valproate, that increase the likelihood of autism.

Autism is often shrouded in misunderstanding as cultural beliefs and interpretations differ significantly from clinical understandings. The most common misconceptions about autism include it being a mental disorder or attributed to witchcraft/black magic, bad parenting, and autistic people being viewed as violent and aggressive. This often leads to self-social isolation to avoid judgment from others who do not understand the condition, financial constraints caused by increased cost of care for education, special school fees, and medical needs, and an impact on family dynamics, causing a strain leading to separation/divorce. These misconceptions are often deconstructed through creating awareness through radio shows and collaboration with healthcare providers. Healthcare providers and teachers can reduce stigma through creating awareness by educating people through health talks, early diagnosis, and referral to support services.

Culturally, beliefs about autism further contribute to this stigma. Some cultures attribute it to mothers eating forbidden foods or undertaking forbidden activities during pregnancy, or not undertaking specific birth rites after delivery. Both self-stigma and perceived stigma play a massive role in delaying seeking care, preventing early diagnosis, and late intervention, which leads to very severe symptoms and complications by the time they present to the hospital.

Parents seeking medical and educational support face challenges such as a lack of expertise and knowledge, misdiagnosis due to a lack of know-how of the condition, and the inaccessibility of autism diagnosis, posing as a major barrier. This stigma then affects the willingness of schools to accommodate autistic students, as teachers may feel it is a heavy load dealing with students who require a lot of care, as some teachers lack the expertise or the necessary training resources needed.

This can, in turn, be attributed to difficulty in accessing the few developmental specialists and allied specialists, such as neurologists, speech and occupational therapists. These specialists often have many patients to take care of, can be costly, and are mainly concentrated in urban areas, creating an unclear referral pathway. Several children receive their diagnoses from institutions such as the Kenya Institute for Special Education (KISE) and the Education Assessment Resource Centres (EARC).Despite these challenges, there are promising developments in research and intervention.

KEMRI Wellcome Trust Research Programme has expanded its work to include neurodevelopmental conditions like autism through its collaboration with the NeuroDev Project—a partnership with institutions in Kenya, South Africa, and the United States—which aims to study the genetic, environmental, and behavioural factors of developmental conditions in African populations. The research has already yielded remarkable insights with preliminary findings suggesting that autism affects about 1.5% of Kenyan children, mirroring global statistics.

NeuroDev has also uncovered several new genetic variants linked to neurodevelopmental differences, enriching global datasets that have historically underrepresented African populations. Their work contributes to platforms like Face2Gene and the NIH Atlas, making diagnosis more inclusive and accurate worldwide.

The Neuroscience department at KWTRP and the Institute for Human Development (IHD) at Aga Khan are trialling the WHO Caregiver Skills Training (CST), with a project called the SPARK study (https://www.thesparkproject.net/) for its feasibility and effectiveness for children with autism and ADHD among other developmental conditions.

There are still existing gaps to care such as lack of a national autism prevalence study, lack of accessible, affordable, validated, and adapted screening and diagnostic tools, minimal data and work on programs and interventions that could better the quality of life of autistic individuals and their caregivers and lack of expertise among healthcare providers and limited awareness and knowledge of autism remain the major challenges in autism diagnosis in Kenya.

To address these challenges, experts are advocating for early screening in health facilities, nationwide awareness campaigns, and more training for professionals in education and healthcare. Parents and caregivers can use visual aids, create sensory-friendly spaces, and tap into support groups can empower both the child and the family. Registering with the National Council for Persons with Disabilities (NCPWD) also opens doors to resources and rights that many may not know exist.

Healthcare providers can reduce stigma by creating awareness by educating people through health talks at the hospitals, and early diagnosis and referral to support services. With policy change underway, such as the 2023 amendment to the Persons with Disabilities Act, this signals a growing recognition of neurodivergent needs, which must then be matched with practical systems, services, and, above all, public empathy.