A young boy aged about nine and speech-impaired walks up and grabs your two hands and crosses them in a uniquely fascinating handshake.
As strange as that may be, he is perfectly a normal child.
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| Actor Majid |
Allen, now six years, lived the first few years of his life depending entirely on porridge. He neither drank water nor ate anything.
But “We are very happy that now he can take five different foods and drink water and take snack,” celebrates Mrs Elorm Duah, Educational Director at the Kokomlemle-based Autism Awareness, Care and Training, AACT, centre.
The two children mentioned above are together with 28 other children living with autism at the centre. Their parents have been blessed enough to have the resources to place them under the care of Mrs Serwah Quaynor, Executive Director and her staff at the centre.
Truth is there are many more children out there who are not so privileged. Some of them have been ignorantly condemned by society as accursed, mentally sick, and demon-possessed, being confined to prayer camps, tied to trees or locked up in rooms.
Now, global trends posit that there is a higher chance that many more children will face this fate.
These children and other unfortunate ones yet to be born have a condition called autism. Medical experts also call the condition autism spectrum disorder, ASD – a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behaviour. The condition is said to usually manifest in the first three years of a person’s life.
When Mrs. Quaynor, a mother to a child living with autism, started her autism awareness creation some 17 years ago, it was calculated that globally, one in every 1000 children was living with autism.
“My son has autism and this is a reason for the centre. When I came back to Ghana there was nothing so eventually I set up this place,” she began. “Then it was one in 1000. Over the years it went on to one in 500, then one in 250 but now the figure is like one in 68. That’s alarming; very alarming,” she warns.
Even more alarming is the fact that no one seems to know how many Ghanaian children have the condition though Mrs Quaynor is able to tell based on enquiries recorded at her centre that the condition is growing popular.
“People are always talking about statistics. You know, statistics works for certain things but in Ghana we really don’t measure. If we don’t know something, how do we measure it? What I say is we use the world figures, which is one in 68 children.”
But “We have also seen an increase in the number of people with autism coming to visit us. What’s accounting for this? For me, we don’t know because we don’t really know what causes autism. Research is saying that it is genetic or environmental.”
As the root cause is uncertain to medical experts so is the cure. “There is no cure,” Mrs Quaynor said. Quickly, however, she gave hope that “there is treatment methodology that we use. There are many, many ways of taking care of children with autism. First of all, when you have the diagnosis the child must go for early intervention as soon as possible. There is a lot of hope.”
The priority for her, however, is that people must become more aware of the condition, accept those living with it as normal children like everyone else and help to care for them. Besides, people must begin to look to prevention. One of the best ways to do this is to pay close attention to the environment and what people eat. It is wise to cut out junk food, unhealthy meat and fast meals manufactured under suspicious conditions.
Awareness
The AACT looks forward to April 2 every year with keen interest because it is the biggest platform for advancing the centre’s awareness creation agenda.
On Thursday, the AACT led other stakeholders in Accra to mark the eighth annual World Autism Awareness Day. The day was first celebrated in 2008 after the United Nations General Assembly adopted a resolution on 18 December 2007, designating April 2 as World Autism Awareness Day.
When that day comes around every April, “We gather here, hoping for our family and friends to come and converge at AACT,” Mrs Quaynor said, indicating that “It’s about raising awareness and acceptance for autism. So we are trying to get everybody on board to do that.”
The passion for awareness is against the backdrop of deep-seated stigmatization. “The stigmatization in Ghana is beyond what you can imagine because the awareness hasn’t reached far enough. We are in Accra but what about those in the rural areas, those in the hinterlands?” Mrs Quaynor quizzes.
AACT Educational Director Duah, who has been a teacher of children with special needs and difficulties since 2001, observed that “Our behaviours and attitudes are not helping.” She compares that “I have had the opportunity to travel out and I have seen what others are doing in helping kids like this improve themselves.”
She then lamented about Ghana’s unfriendly society. “If I took one of these children to a nearby shop, everyone passing would be staring and watching. And they wouldn’t even stare secretly…In the workplace, people would be passing derogatory comments.”
The work done so far has attracted people like Alice Mamaga Akosua Amoako, who is AACT’s Autism Ambassador. “The main issue here is the awareness,” she related to Weekend Sun. “I realise that a lot of work needs to be done. You go out there and no one wants to get these children involved in any social activity. No one wants them to be part of anything they do.”
The hope for all these children is that so far 2000 people in Ghana come into contact with AACT and have become agents of demystifying the condition. Aside that, there now abounds the autism ambassadors group with “permanent volunteers who are always helping to do autism awareness campaigns,” Amoako.
There are also screen gods like Martha Ankomah and Majid Michel who are helping to bring home the news.
Story originally written for Weekend Sun.
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