*Kofi* has never been able to string more than two words together until two weeks ago when he uttered his first full sentence. No big deal for most 12-year-olds but Kofi is different – he’s autistic.
Autism is a developmental brain condition that affects people’s ability to communicate, and influences how sufferers process the world around them. More specifically people with autism may have some difficulties forming friendships, comprehending others’ perspectives and displaying affection. But they also have amazing gifts and talents.
The condition affects one in 100 people in the UK’s 6.3 million population, which means that over 100,000 people living with the condition come from black or ethnic minority communities, according to the National Autistic Society.
Despite this figure, African communities are less likely to seek early diagnosis and face more of an uphill struggle trying to seek support than their white peers.
Social stigma attached to mental health issues within the black community, a lack of trust in the health care system and cultural insensitivity within education can also cause parents to resist seeking treatment. This can manifest even when signs of the disorder are evident.
This was something that Kofi’s parents know only too well and have had to grapple with for much of his life.
“Kofi was diagnosed was he was two,” his mother said. “I initially didn’t understand what the condition was and I assumed it could be cured with drugs. But when the doctor said there was no cure, I then got really disturbed and cried many times.”
But acceptance did not come easy to Kofi’s parents. His mother *Akosua* refused disability allowance for the first six years after the diagnosis because she did not want Kofi to be labelled. As a result, it meant that her and her husband had to shoulder the cost and responsibility of caring for him alone.
She’s not alone. The stigma associated with having this condition has a tight grip on the Ghanaian community. Children with the condition are often branded as naughty, mad or the product of witchcraft. Out of fear and ignorance, Ghanaians will seek help through unscrupulous religious leaders instead of getting professional support.
And it is usually the shame and lack of understanding about autism that results in parents hiding their children away from the rest of society.
Akosua freely admits that she was initially ashamed of her son’s condition.
“I used to send him to his room to play on his Nintendo when visitors came because I did not want the judgment,” she said. “The situation would make me so bitter, tense, and lonely and sometimes, on my way to work, I cry so fiercely that I could not see properly when driving. I would end up stopping somewhere to weep before continuing to work.”
The turning point came when a friend invited her to visit a severe learning disabilities centre for children.
“I saw that my life was not that bad and although Kofi was different, he had so much to give,” she said. “That’s when I started to accept the situation.”
She no longer hides him away. When visitors come, she encourages him to greet them. They regularly go out on public transport and Kofi enjoys going swimming and to the cinema with his council-funded carers.
“Autistic children’s behaviour can become worse when they are not used to socialising. It can be a nightmare getting him on the bus, the reception you get from some nasty people, the dirty looks – it can be hell. And when you feel ashamed, you end up panicking and becoming defensive even if someone passes an innocent comment. But the more you do it, the more they get used to it. It will take them time to learn it but it stays with them for a long time.”
Never give up
The pair even started going organic fruit picking.
“I want to change his diet and get him away from eating food with toxins and extra additives.,” said Akosua. “I now know that he will not be academic so I want to provide him with the life skills he will need for when we as his parents are not there.”
Akosua resigned from her job to set up her own business. The decision has allowed the mother-of-three to spend more time caring for Kofi.
She is a school governor at his school and has used the opportunity to educate the institution on his condition and it should be approached. Akosua is now taking part in a sensory intervention programme, which aims to develop a treatment/nutritional regime for him.
Because Kofi is not aggressive, Akosua had to fight for him to go to a special school. This meant she had to strenuously campaign to her local council and paediatricians to ensure that her son was not written off and got the support he needed.
“I told them, I am going to do the best for my son and when they realise that you are not going to give in, that’s when they give you what you want,” she said.
Akosua has even established a self-help group of parents where she shares her experiences and knowledge with them. Her ultimate goal is to bring the same awareness to her home city of Kumasi in Ghana, West Africa and build on the expertise that already exists in Ghana’s capital city Accra.
Because I have changed my outlook, people are surprised that I am happy even though I have a child with autism. Last Sunday, when I asked him his name, he said it.
“I thought, my Lord! He used to say single words like “mummy” and “daddy” but never has been able to formulate a sentence. It gave me hope that maybe by the time he is 15, he will able to say something to me.”
The names *Kofi and Akosua* names have been changed to protect their identities.