Tatenda Kanengoni, GPJ Zimbabwe
Archie Liam Vundla, a student at Pathways Autism Trust center in Harare, Zimbabwe, enjoys the playground. The center employs the Treatment and Education of Autistic related and Communication-handicapped Children (TEACCH) approach, a structured teaching method designed to enhance individual students’ strengths.
HARARE, ZIMBABWE — It’s 1 p.m. Friday and the teachers and children at Pathways Autism Trust are singing their goodbye song. Each child’s name is called out in turn, voices rising to wish each one well at the end of the school day, launching them on their journey home.
The center is one of three in Harare for children with autism spectrum disorder (ASD). The disorder typically appears during the first three years of life, and kids with autism often have a difficult time with speech, repetitive behaviors and other sensory issues. The goodbye song sung every day at the end of class helps the students to transition to their next venue.
Due to lack of awareness and diagnosis, those with autism in Africa and elsewhere often are marginalized, discriminated against and sometimes imprisoned or considered insane, according to the ICare4Autism African Autism Awareness and Intervention Initiative, a non-profit dedicated to improving the life of children and adults who live with autism.
Some families continue to keep autistic children “hidden away. There’s stigma. There’s shame,” says Flora Chinhaire, a founding trustee of Pathways Autism Trust.
One non-verbal child likely on the autism spectrum Chinhaire met while visiting a rural area was being beaten by teachers, she says. The beatings came, she says, because the teachers “just think they [autistic children] are being stubborn.”
Two organizations in Harare — Pathways Autism Trust and the Autism Organization of Zimbabwe — are fighting against these misunderstandings by helping the community better understand those with the disorder and by helping run autism centers.
What generally is not understood, says Helen Mutambara, a speech and language therapist and the director of the Autism Organization of Zimbabwe, is that the disorder often is accompanied by unique strengths.
“There’s a thin line between mental challenges, intellectual disability and autism. A child with autism is super intelligent, the Bill Gates of our time,” she says.
Unique strengths are best nurtured by helping autistic children stay calm through use of routines, and routines are emphasized at the centers, Mutambara says. “A child with autism follows a routine, a smart routine. You cannot bypass that routine. If they wake up in the morning first its cereal, then bath time,” she says.
Routine has helped Patience Chinyowa’s 7-year-old daughter. Although she had been placed in a special needs class in school, “she could not settle down in one place. She would break windows and if she was given charts to read, she would tear them apart and bite other children. I always had to carry her on my back in public.”
Stigmatization ensued.
“People called my child mentally retarded, parents would run and take their children when my daughter was in their presence and it used to bother me, but I accepted it as something that is expected in the situation,” she says.
While attending a seminar on epilepsy, Chinyowa met Mutambara, who suggested her daughter exhibited autistic traits. “Following my meeting with Helen, I brought her to the center and two weeks later her behavior improved significantly,” she says.
Although no reliable figures exist, the number of patients diagnosed with autism in Zimbabwe and other countries is on the rise, according to Harare psychiatrist Dr. Rabia Khan. “I think what we are saying is increased number of patients with autism are being detected now and this is a huge debate of whether there is an actual increase or it is [because of] improved detection,” she says. “It could be both.”
Mutambara says registering the group in 2011 initially proved a challenge due to minimal understanding of autism at the time. Zimbabwe’s Ministry of Public Service, Labor and Social Welfare“wouldn’t refuse us, but they also really wanted to do research on autism” to find out more.
Strides have been made since then and the Ministry of Lands and Rural Resettlement recently allocated a farm to the Autism Organization of Zimbabwe to build a school that would include special programs for children with autism along with children without the disorder. It was due to open in early 2017 but has been delayed because one of the key donors is ill, Mutambara says.
Pathways Autism Trust in October hosted German volunteers to train staff on a teaching method that incorporates routines like the end-of-the-day song. Called the Treatment and Education of Autistic related and Communication-handicapped Children (TEACCH) method, it focuses on using visual aids and consistent structure to address students’ challenges with attention, executive function and communication.
In November, the Autism Organization of Zimbabwe hosted Dr. Alok Sharma from Mumbai, India, who explained to parents the role of stem cell therapy in assisting patients living with autism.
Four parents signed their children up for the procedure, in which stem cells extracted from bone marrow are injected into a patient’s spinal fluid to regenerate and replace damaged cells. One child went to India to have the procedure carried out in January, and the others are scheduled to follow, Mutambara says.
Tatenda Kanengoni, GPJ, translated some interviews from Shona.
