Globally, April 2nd is marked as World Autism Awareness Day and ushers in a month of activities to create awareness, generate support and foster inclusion of persons with autism.
In Nigeria, the events marking the day are primarily led by international and nongovernmental organisations and the private sector. For the latter, it typically falls in the realm of corporate social responsibility and attracts an inordinate amount of press coverage.
Despite years of these awareness-branded events and activities, not much is known about the background and thrust of these events. Even more concerning, after years since the UN-inspired proclamation, it is difficult to assess their real contribution towards the inclusion of individuals with autism in mainstream Nigerian society – in education, healthcare, or employment.
Autism is under-researched and widely stigmatised across most developing countries. In Nigeria, limited reports indicate cases of autism are on the rise, with most cases diagnosed by age five and over for children, with limited support thereafter.
According to the U.S. National Institute of Mental Health, autism, or autism spectrum disorder, is a neurological condition that affects how people communicate, learn, and behave or interact socially.
Genetics is reported as the primary cause of autism in over 90 percent of cases, with older parents being at higher risk of having a child with autism, and finally, environmental factors including adequate prenatal care and nutrition.
Individuals with autism typically demonstrate restricted, repetitive patterns of behaviour, interests, or activities. Autism manifests as a variety of symptoms that evolve over time, which explains the reference to ‘spectrum’ disorder, and for young children, early diagnosis and access to appropriate expert care and support can significantly influence their health and wellbeing later in life.
Autism is considered a developmental disability, and once diagnosed, individuals with autism may qualify for disability benefits and support in developed countries. Conversely, in Nigeria, education and support services for persons with autism are largely run by a small pocket of unregulated private sector operators.
There is a stunning opaqueness to the government’s recognition or provision for this demographic or policy integration in the early diagnosis, care and support of individuals with autism. Nigeria’s long-awaited disability discrimination legislation is embryonic at best and records inconsistent impact nationally.
The journey in developed countries has been long with contributions from civil society and government. In 1970, the Autism Society launched the first National Autistic Children’s Week, which later evolved into Autism Awareness Month. Almost two decades later, in April 1988, President Ronald Reagan issued the first presidential proclamation declaring April as National Autism Awareness Month.
Again, almost two decades later, in December 2007, the United Nations unanimously designated the 2nd of April as World Autism Awareness Day, and it has been observed every year since 2008. Their primary goals for the UN were to highlight the need to improve the quality of life of those with autism to enable them to lead full and meaningful lives as an integral part of society.
They invited Member States to raise awareness of autism across all levels of society and, working with international societies, non-governmental organisations, and private organisations, to raise public awareness of autism. In the years since 2012, each World Autism Awareness Day drew attention to a variety of themes as they affect individuals with autism, from education to assistive technologies to inclusion in the workplace.
Over the years, Nigeria marked Autism Awareness Day with webinars, conferences, and seminars in major cities. Some large organisations have adopted autism as their focus for corporate social responsibility, providing material and financial support that never lacks media coverage.
Laudable as this is, critics see this as tokenistic and unlikely to lead to real, sustainable infrastructure needed to equip individuals with autism with adequate healthcare, education, employability skills and ongoing support for co-current conditions that some autistic individuals live with.
The Association of Intellectual and Developmental Disabilities of Nigeria, the representative body for persons with autism, like most nongovernmental organisations, struggles with capacity, funding and influence to drive the policy shifts needed to recognise and support their stakeholders to live equal, full and dignified lives in wider society.
Reflecting deeply, a number of questions come to mind: how effective have these Autism Awareness Days and months been over the years? What happens after creating awareness? Do we know the population of citizens affected? What achievements can be attributed to the various activities, speeches, and monies and donations given and received at such events? Is any local, international or non-governmental organisation monitoring and reporting the impact made?
We know that credible data is a challenge in Nigeria, as are affordable healthcare and basic primary education, and even more so, the expertise and specialised facilities required to support people with autism. These foundational gaps have contributed to the failure of the Nigerian government’s attempt at inclusion of individuals with autism. In my recent research, a vast majority of employers in Nigeria lacked awareness and, in some cases, made no pretence of ignoring legislation to reflect at least 5% persons with disabilities in their workforce.
Cumulatively, it is no surprise that the sustainable development goals (SDGs) are reported as being at risk and unlikely to be achieved by 2030. For individuals with autism and persons with disabilities, stigmatisation, cultural prejudice and discrimination remain, often compounded by lack of education, employment and ultimately, cyclical poverty. The future seems bleak for individuals with autism born without a silver spoon.
A closer look at the autism global milestone trajectory suggests a key shift occurs roughly every two decades. This is a call on the United Nations, international bodies and the Nigerian government to consider expanding the scope beyond awareness of autism to include key performance reporting metrics.
After all, what you do not measure, you cannot manage. As developed countries make advancements with disability inclusion across education, healthcare, employment, supply chains, the arts, sports, and technology, to mention a few, it is critical that Nigeria is not left behind. There are positive models to learn from in Australia, Canada, Norway and Sweden, societies ranked as autism-friendly.
Nigeria must begin organically, adopting an integrated multidisciplinary approach and scaling autism research, early screening of children and support for people diagnosed with autism as they age, ensuring they are treated with dignity and given equal opportunity to live, learn, thrive and contribute to society.
Nneka M.R. Idam, Ph.D. is a researcher and human resource management professional.
