Issue No. 844

Autism in Somalia

In recent years, an increasingly sophisticated understanding of the nuances of autism has emerged across much of the world. Advanced ways of identifying and supporting those with neurodivergence have materialised, particularly in education and in the job market. That has not been the case in Somalia, however, even though medical studies have revealed disproportionately high diagnosis rates amongst Somali children in some Western countries. Instead, traditional Somali understandings of mental health and neurodivergence continue to operate in a rigid binary, centred around the concept of waali (insanity). Within Somali culture, there is limited room for developmental or neurological differences that do not fall within these expectations of either psychosis or normalcy. 

Autism Spectrum Disorder (ASD) is classified as a broad spectrum of neurodevelopmental disorders that vary significantly in terms of communication abilities, social interaction, sensory processing, and behaviour. It can range from those entirely non-verbal and requiring intensive daily support to individuals with less distinguishable struggles with social interactions, but who may possess particular intellectual capabilities. Formerly described as Asperger's Syndrome, this latter group is now considered within the autism spectrum disorder, without intellectual impairment. Globally, around 1% of children are estimated to have autism, but accurate medical data in Somalia is nigh-impossible to come by, and this is notably the case regarding autism, which is routinely misdiagnosed. 

There are also critical gendered dimensions of autism, particularly amongst less severe cases, with autistic girls and women routinely overlooked due to their abilities to 'mask' neurodivergence. And this is greatly accentuated in cultural contexts such as Somalia's, where girls are raised to be demure and obedient. This camouflaging can mean that autistic girls are simply considered shy or well-behaved, even while wrestling with significant distress. Conversely, within traditional Somali family structures, where male children are considered the future heads of households and bearers of the family name, developmental differences in boys may attract greater attention. 

That does not mean, however, that there is a broad acceptance or understanding of autism and neurodivergent differences in Somalia; quite the opposite. Within the Somali language, there is no word for 'autistic' or those with developmental differences, with terminology historically disparaging. Labels such as qof kala dhiman (incompetent), maangaab (slow-minded), qof jiran (sick), and qof waalan (crazy) reflect the misunderstanding and profound social stigma attached to both autism and mental health challenges, such as PTSD and depression, as well. The harsh binary between 'sane' and 'insane' in Somali culture and lexicon radically reduces the space for understanding, let alone treatment and support. This is compounded by prevailing spiritual interpretations, in which mental and developmental conditions are routinely attributed to possession by jinn, the so-called 'evil eye,' or divine punishment for wrongdoing. 

But underpinning much of this is the cultural architecture of shame (ceeb) and honour (sharaf) in Somalia's clan-based culture. The complex social currency which determines access to marriages, job opportunities, political influence, and community systems is not kind to those with non-verbal autism. Having a neurodivergent child who is unable to verbally communicate is often regarded as a moral indictment, a source of shame to be concealed, and associated with bad luck that can bring misfortune, such as drought. Consequently, many families prefer to interpret their child's behaviours as a temporary phase that will be resolved through patience and faith.

It is then little surprise that support for those with all strands of autism is virtually non-existent in Somalia. Decades of civil war and conflict have decimated the country's healthcare system, leaving only a handful of mental health practitioners remaining in the country. Combined with a lack of culturally adapted diagnostic tools, autism is commonly misdiagnosed or entirely missed. In one case, an autistic boy was misdiagnosed with epilepsy in Mogadishu until his relatives in Kenya identified autistic traits. Further complicating diagnosis is that roughly 60% of Somalia's population is under 25, and having grown up amidst perennial conflict and the collapsed state, many of their formative years have been highly traumatic. Research on childhood experiences suggests that this kind of prolonged exposure to trauma can produce cognitive and behavioural patterns that closely resemble autism, making it difficult to disentangle developmental disorders from the psychological impacts of war. Even amongst those who have heard of autism, misinformation is also rife, and-- as is commonplace in many countries-- associated with vaccinations, particularly the measles jab that happens for 9-10-month-old babies.

But even when a child has been diagnosed-- improbable for those living in Al-Shabaab-held and impoverished rural areas-- there is rarely follow-up support. And this extends to education, with no government-supported autism-centred schooling in the country, and the only speech and occupational therapists concentrated in Somalia's major cities. Thankfully, some specialist centres do exist, such as the Autism Somalia Centre, based in Garowe, which was founded in 2019 to support youth with developmental disabilities. But the majority of support for mental health, under which autism is routinely misclassified, comes under a network of informal private facilities. Known as Ilaaj (healing in Arabic), these unregulated practices emerged in the aftermath of the collapse of the state, with many still run by faith healers who wield 'traditional' practices to somehow heal those displaying autistic traits. Falling far below any level of clinical support, some can veer into abusive, with one 2015 report by Human Rights Watch citing examples of patients held in chains and subjected to exorcism-related physical abuse." Assistance for autistic adults is even more limited, with those requiring full-time care from their families for years-- nearly entirely without diagnoses. Impoverished families do their best with what they can source, sometimes with non-governmental assistance, but mostly without.

There are some efforts within the diaspora to bring about a more sophisticated response within the Somali context to autism. In Minnesota, for instance, Somali parents and healthcare workers have sought to introduce terms such as maangaar (unique mind) in an effort to reframe autism in a less stigmatising light. There are comparatively higher rates of autism within the Somali diaspora, a 2023 study by the US Centres for Disease Control and Prevention in Minnesota – home to the largest Somali population in North America – found that one in 16 Somali four-year-olds had been diagnosed with autism, compared to one in 53 among their non-Somali peers. Even so, these findings have been met with scepticism by many diaspora families, who have frequently dismissed it as a 'western disease' – believing autism does not exist in Somalia.

Greater and more diverse support for the broad array of autistic people is clearly needed in Somalia, but with such limited government infrastructure, it is grassroots organisations and some international non-governmental organisations that have assumed the burden. Beyond the occasional oasis of autism-focused centres, it is the pervasive stigma and misinformation around autism and other neurological differences that remain the most significant barriers to supporting those with autism and their families. Breaking down the binaries surrounding sanity/insanity is no small feat, but establishing some greater regulations concerning the Ilaaj centres is eminently possible. And perhaps as a first step, greater research could be invested into neurodivergent and mental health issues in Somalia towards understanding, awareness raising and the development of support systems for individuals and families struggling to come to terms with such disorders.

The Somali Wire Team