By Toks Bakare
In 2007, the United Nations declared April, Autism Awareness month and the 2nd of April World Autism Awareness Day (WAAD). Seven years on, Nigerians are waking up to the reality of autism but we have a long way to go to accepting that reality.
Autism is a complex developmental disorder that appears in the first three years of life. It is a spectrum with symptoms ranging from mild to severe and its cause is still unknown. The umbrella term Autism Spectrum Disorder (ASD) refers to five specific diagnoses: Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. These disorders are grouped together because they share common qualitative impairments in areas of social interaction; communication; and range of behaviour.
Spotting the signs early is crucial; this is the reality we must begin to accept, to make room for positive attitudes towards treatment. Around 3 months the baby may not be making frequent eye-contact, or seem interested when you make faces. Around 6 months they may not laugh often when being tickled or played with. Around 8 months you may notice they do not follow your gaze when you look away and may not have started babbling. By around 1 year it may seem as if they still do not know their name and may ignore when you call. They also may not be waving bye-bye. By around 14 months they may not be talking, if they are babbling it may be with an unusual tone, they also may not be pointing at things of interest. By 18 months you may notice playing in an odd way with objects and a lack of pretend play (children should enjoy pretending to cook, clean, sleep etc). You may also notice extreme sensory sensitivities and odd body or hand movements like rocking back and forth or flapping hands.
In adults, ASD can be more difficult to identify. Over the years the person may have established various coping behaviours that mask the disorder. Compensating for an underlying deficit, some adults with autism can learn to utilise other skills in positive ways. For example, a person having difficulty with change and coping with novelty may choose to engage in tasks that require perseverance, focus and repetition. An individual that finds it difficult to see “the bigger picture” can compensate by utilising their ability to notice and remember incredible detail. These individuals may have autism but they are also intelligent, charismatic, gifted, sensitive and humorous and are not limited by their known or unknown deficits.
Some signs to look out for in adults are challenges with verbal and non-verbal communication. Some have difficulty expressing and interpreting emotions, facial expressions and gestures and find it difficult to establish and maintain eye contact during a conversation. Some may experience extreme over or under-sensitivity to sounds, smells, textures and other types of sensations which can interfere with their ability to interact socially. Social awkwardness can also be a result of an inability to completely empathise and share another person’s perspective. Some adults can be ritualistic and restrictive in their behaviour and some may have difficulty with motor movements or have a complete lack of speech. These difficulties often cause great frustration and anxiety.
ASDs are typically defined by the impairments an individual has, however it is also important to understand the skills and talents that can appear. Focus, drive, perseverance and honesty without reservation are positive traits that can result from the above impairments. When nurtured these can become useful skills in a classroom or workplace environment. Society needs to acknowledge, and see beyond the deficits in ASDs.
Benjamin Banneker was a man of African descent, said to be the first African American scientist. Achieving many great things he became an avid astronomer. He made predictions of profound significance to Science, including his prediction of the solar eclipse of April 14th 1789. He understood the importance of many things and had strong ideas about peace and freedom. From what we know of Benjamin he appears to have had autistic traits throughout his life. However he lived in the 18th century before autism was defined, so we cannot know for certain. Nevertheless, we celebrate his life as one of the few successful people with autism of African descent that we know.
Stephen Wiltshire (popularly known as the human camera) is a black man leading a full and happy life functioning to his greatest capacity. He is an artist with autism who draws and paints detailed cityscapes. He has a particular talent for drawing lifelike representations of cities, sometimes after having only observed them briefly. His work is popular worldwide, and is held in a number of important collections. As a child Stephen was mute, and did not relate to other people. Aged three, he was diagnosed with autism. He had no language and lived entirely in his own world. It soon became apparent he communicated with the world through the language of drawing. His drawings show a masterful and unique perspective and reveal a natural innate artistry.
We celebrate these two men because having autism did not get in the way of living a full and happy life. The people that love them have not allowed deficits to hinder unique abilities; they have nurtured strengths to bring forth talents in art and science. Benjamin and Stephen did not overcome autism, they were not “cured” from it nor did they miraculously “come out” of it. Despite what they faced, they and their loved ones were able to make the best of what life dealt. They are black people with autism that are successful; and they are the kinds of leaders the autism community in Africa needs.
Autism Awareness month is a chance for us to equip ourselves with a better understanding of the condition, in order to eradicate fear, reduce prejudice behaviour and become a more positive and caring community that celebrates successful Africans with ASDs. It is important to nurture our children from an early age despite whatever symptoms they may present; to be compassionate enough to allow them to explore and express themselves in ways that may seem unconventional; and to seek appropriate intervention and treatment options early on. We must strive for an inclusive society that takes advantage of all skills and talents, with inclusive education and employment opportunities.
This year’s autism awareness campaigns across Nigeria have been unprecedented. Nigerians are indeed waking up to the reality of autism. Although we may have a long way to go to accepting that reality, I believe that the change we need is possible through education. With every article you read, every flyer you pocket, every post you like and share, education is happening and awareness is spreading. What will you do to help shine the light on autism?
Toks Bakare is a behaviour analyst that has worked predominantly in Europe and more recently in Africa. She is an independent consultant whose work with children has led to positive improvements in the lives of many affected by autism spectrum disorders (ASDs), other developmental disorders and behavioural challenges. Miss Bakare has a commitment to bridging the mental health treatment gaps in Nigeria through professional service provision as a behaviour analyst and also to bridging knowledge and awareness gaps across the nation through public education and advocacy.