‘I Adore Her Now’: Mother Learns To Cope With Child’s Autism In A Country With Little Help
Martha Ongwane looks adoringly at her bouncy, giggling four-year-old, unable to believe that just two years ago she had wanted to kill her.
Non-verbal, biting and unable to sit still, her daughter Rachael, who had been diagnosed with autism, had slowly overwhelmed Martha leaving her desperate and depressed.
She was shunned by her neighbours in the east African country of Malawi, who blamed her for what Rachael was doing. Martha was told to lock her little girl inside.
There was no sympathy, and little understanding of autism and how it should be treated.
Martha describes how she had poured poison into a cup, intending Rachael to drink it.
“I told myself it would be better if she died because that would mean she would rest and that would be the end of our problems.
“[But] my heart didn’t let me. I changed my mind and cried so much,” she says softly, looking down at her hands.
Two years on, it is hard to imagine that scene as mother and daughter share a loving domestic moment.
Rachael clambers onto her mother’s lap as they sit on the floor of their home in Mzuzu, northern Malawi.
The girl laughs, hugging Martha’s face, as the 33-year-old cuts vegetables to serve with nsima, a thick porridge made from maize, for lunch.
The transformation has been incredible and is largely down to the family getting access to expert care.
On one of their many visits to Mzuzu Central Hospital, Rachael was referred to Saint John of God, an organisation that helps disabled children.
Funded mainly by the Catholic Church, it not only provides community-based mental health services, but it has a school for children with special educational needs. It became a lifeline for the family.
Martha and her husband also received counselling.
Once isolated and stigmatised, the couple found a support network and educators who were able to deal with Rachael’s issues.
But most here are not so lucky.
According to statistics from the World Health Organization, Rachael is one of more than 60 million people worldwide who are on the autistic spectrum.
Autism, or autism spectrum disorder, is a neurodevelopmental disability – meaning it affects how the brain develops – and it influences how people communicate, relate to others and process the world around them.
It exists on a spectrum, affecting individuals in different ways and to varying degrees.
Many autistic people can show certain characteristics, including intense focus, strong memory and innovative thinking.
But in countries where spending on mental health and behavioural disorders is not a priority, often only those with extreme behavioural differences or challenges are noticed, and with that comes stigma and discrimination.
In Malawi, for example, there are just two developmental paediatricians for the population of over 22 million people, and three consultant psychiatrists.
The word autism does not exist in the country’s most commonly spoken language, Chichewa. It is often translated as “ozelezeka” meaning someone who is mentally challenged, or “ofuntha” meaning someone who is troublesome.
There are also a whole host of misunderstandings of autism.
Saint John of God is trying to change perceptions.
In a community centre not far from Martha’s home, religious elders, both Christian and Muslim, gather together on green plastic chairs. They are here for an autism awareness session run by the organisation.
Many here believe witchcraft is a root cause of autism and the discussion begins with the participants laying out what they think.
A vicar, with a large gold cross around his neck, says everyone knows that people can bewitch each other. Another man stands up claiming magic can be used against pregnant women and that is why children have autism.
Christopher Mhone from Saint John of God acknowledges there is little understanding of autism but uses these sessions to nudge the participants into a different way of viewing autism, showing that practical interventions can help deal with the symptoms.
Reflecting on Martha and Rachael’s case he says that “for a woman to come to a point where she feels like she should kill her child – as a nation we have failed her. Her burden has become so impossible to bear that she does not have the emotional and psychological capacity to cope.”
Mhone says most autism support is provided by the non-governmental or charity sector.
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While basic mental health services such as assessment and referral are accessible at district and primary care levels, there is only one government-run psychiatric referral facility in the whole country – Zomba Central Hospital.
“Autism is not even mentioned in the Disability Act. For me, that tells you about the issue of visibility of the problem. If you don’t know you have this problem, there’s no way you can begin to sort it out,” Mhone says.
The BBC contacted Health Minister Madalitso Baloyi to request an interview about national provision for children with autism but did not receive a response.
Access to quality healthcare is limited in Malawi, and many turn to traditional healers and witch doctors as the first port of call for any medical or mental health problem.
This was the route that Natasha Lusinje took for her five-year-old son, Shalom.
Three-hundred kilometres (186 miles) south of Mzuzu, in a barren compound outside the capital, Lilongwe, the young boy, who is non-verbal and cannot feed himself, sits playing alone.
Natasha is alert, anxious.
“There are so many people who have told me this child was bewitched. People magically tied his tongue so he could not speak,” she says.
Nearly three-quarters of people in Malawi believe in witchcraft and Natasha is one of them.
For her, it offers both a reason for her son’s behaviour and a solution.
She has decided to take Shalom to a traditional healer in search of a cure. BBC Africa Eye is given rare access to their experience.
They travel by bus to the healer’s home on the outskirts of the capital.
Wearing a long white dress, the healer, Maness Sanjelekani, faces the wall and begins chanting: “We give praise to you God this evening, as you have sent your lamb seeking for healing here. Because he doesn’t have a soul, because evil people from the dark did this to him.”
She has no medical qualifications but the healer says in her view there are two types of autism – the one from God, which she cannot change, and the one from Satan which she can heal.
She says Shalom has the latter.
This is completely unfounded both medically and scientifically.
Natasha handed over 26,500 kwacha ($15; £11.50) and over the course of three weeks, Shalom is bathed with herbs and forced to drink herbal remedies daily, but he remains non-verbal. Natasha is also instructed to use a “treatment” that involves putting small cuts on Shalom’s skin.
When confronted about this, Sanjelekani denied any form of child abuse.
“I can only say I am trying to save his life. I am trying my best to save him,” she says.
When questioned about claims of two types of autism, accused of running a scam, and asked to admit she is lying, she says: “Let me just accept I have failed this child.”
Natasha eventually took Shalom home but still clings to her faith that God will help her find a cure. For her, this is still the only hope.
Back in Mzuzu, Martha helps Rachael get dressed in her blue-and-white chequered school uniform. She has been going to a Saint John of God school for a year now.
In the Mzuzu facility, the organisation has the capacity to help more than 600 children a year.
Rachael is learning to speak and when her name is called in class, she jumps up, grabs her friend’s hand and encourages her to stand and sing with her.
In the well-maintained gardens, young adults – some with Down’s syndrome, others with cerebral palsy, and autism – carefully tend their crops.
“I want us to conceptualise disability in a positive way,” says Mhone.
“Disability is ability, in a different way. And if society begins to understand that, then there will be less stigmatisation, and they will be looking at the positive things that can come out of those with disabilities.”
Martha can hardly believe the change in her daughter and in their lives.
She has shared her story in the hope that it will help other mothers and wishes she had got help sooner.
“When I look at her, I feel so guilty. Every day I think about the fact that my daughter could have been dead.
“I adore her now.”
Same Difference 