SURREY, United Kingdom — Autism in the developing world, particularly Africa, is neither frequently treated nor recognized. Due to a lack of awareness and a lack of resources, autistic children and adults in Africa often experience very difficult lives. They have been tied up, locked away and even set adrift to wonder by themselves. In Nigeria, for example, the state does not recognize autism as a condition. Thus, many of the ‘mad’ people on the streets are actually autistic people who have been set adrift, with no medical or legal framework to look after them.
The Battle for Recognition
The help available for understanding and treating autism in Africa is minimal. In 2015, of the 1 billion or so inhabitants of sub-Saharan Africa, there were only 50 child psychiatrists. Not all of them had the skills or knowledge to diagnose autism. In fact, many diagnoses are informal. Zemi Yenus, founder of the Joy Centre of Excellence for Autism in Ethiopia, is a beautician by training and can only provide parents with informal diagnoses, unbacked by medical qualifications. Yet with the scant availability of true experts specializing in autism in Africa, many parents must make do with this.
Due to the rarer diagnoses, it is often only the severe autistic children who are noticed. Compared with one-third in America, half of autistic children in Africa are diagnosed with an intellectual disability. It is often only the more severe autistic children whose intellectual ability is affected by the condition. As a result of these scanter diagnoses, it is often the case that those with milder autism remain undiagnosed.
Due to a lack of education, many attribute the symptoms of autism to a curse or demonic possession. This has been represented in surveys conducted in Kenya, Nigeria, Ethiopia and Tanzania. Furthermore, the stigma attached to the condition of autism in Africa can often prevent parents from seeking the advice that is available. Autism in Africa routinely remains undiscovered largely because malnutrition and life-threatening diseases are bigger, more urgent problems.
Autism in Africa – Services and Societies
However, small autism societies and organizations, like the Joy Centre in Ethiopia, do exist in many African countries. Often underfunded and running on volunteers, they are nevertheless vital for parents of autistic children in Africa whose access to medical professionals is near non-existent. These include the Blazing Heart Autism Centre, a Nigerian organization which both helps autistic children and advocates for their rights; Autism South Africa, which holds workshops and contributes to media surrounding autism across South Africa; and Morocco’s Association des Parents et Amis d’Enfants Inadaptes, a political organization which defends the rights of people with disabilities and has gained medical equipment for several centers through their activism.
Autism Society of Kenya
The Autism Society of Kenya is one such organisation. It was founded in 2003 by parents who viewed the conditions of autistic children in Kenya as unacceptable. Many children were locked up in mental institutions or chained in their homes. The organization aims to create greater awareness of the condition, as well as to lobby at the county and national levels for greater government initiatives to help autistic children.
In an interview with The Borgen Project, organization member Felicity Ngungu stated that their main objective is to “lobby and advocate for the development of multidimensional programs in mainstream National schools and other institutions by both National and county governments.” Moreover, they “strive for a brighter future for all individuals with Autism.” She explained that poverty majorly affects the lives of children with autism: “Children with autism are directly affected by poverty. Most parents and guardians of children live in dire poverty and with no structure for children and individuals living with Autism. The situation is unbelievably sad. In Kenya, there are no policies in place for children and young adults with Autism and other developmental disorders.”
Ngungu is optimistic about the progress that has been made, despite the low level of awareness. She asserted that “the awareness levels have improved since the Autism Society of Kenya was founded in 2003 and of course with the internet and other organizations joining in the effort. There is still a long way to go. Political will and involvement of national and county governments would be of great help with awareness creation.”
Autism Association of Namibia
The Autism Association of Namibia is another key organization treating autism in Africa. Made up of parents of autistic children, autistic adults and professionals, the organization provides support and assistance to other parents and professionals. Additionally, it gives people access to a network of autism organizations worldwide. They are currently reliant on volunteers.
Petra Dillmann, the organization’s founder and director, is not optimistic. In an interview with The Borgen Project, she explained that “poverty here makes everything worse.” Namibia relies on tourism and “COVID-19 has hit the country very hard, and our economy is down, down, down.” She continued, “projects are expensive because we are a relatively small population with vast distances between towns and places.” This makes internet accessibility “quite expensive and erratic.” She concluded by emphasizing that “inclusion is mostly wishful thinking,” but despite this, things are improving. “Namibia has signed all sorts of declarations on rights and such, but the implementation is very slow.”
To raise awareness, Dillmann suggests radio interviews and newspaper advertisements which promote inclusion. She said “promoting that the onus rests on society to accept and understand and not always think it is someone else’s job.” This is a start, consider Namibia’s various languages and the distance between towns.
As for foreign aid, she stated that “the UN is helping a lot in the form of advocacy and training and such, we (Namibian disability organizations together with the UN and our government) are currently involved in a three year project on early intervention, improving statistic collections and information, advocacy and rights.” Despite UN intervention, it is incredibly valuable that organizations such as the Autism Association of Namibia link parents and professionals together across countries such as Namibia where these relationships are more difficult to come by.
The Gap Between Rich and Poor
The lives of autistic people, especially those on the more severe end of the spectrum, are difficult all over the world. Even in rich countries such as the United Kingdom, facilities that look after autistic people are often understaffed and underfunded. However, this is nothing compared to the dire situation in Africa. A continent where many don’t even know that the condition exists. Autistic people in Africa do not have the infrastructure, flawed as it often is, that those in the developed world do. However, organizations such as the Autism Association of Namibia and the Autism Society of Kenya do all they can.
– Augustus Bambridge-Sutton