The ‘curse’ of autism

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HARARE – Autism has remained a mysterious condition many Zimbabweans do not understand, with most associating it with superstition.

The lack of awareness, coupled with government’s apparent neglect, has seen many families with autistic children desperate on how to deal with it.

As a result, the condition is associated with witchcraft, evil spirits, curses and all sorts of blame among family members.

Scientifically, autism is a spectrum of disorders ranging from mild to severe that affects two main areas of development in a child — social interaction, language and communication, and repetitive, rigid behaviours.

About two in every 100 people worldwide are on the autism spectrum, translating to between 130 000 to 200 000 people with autism.

The dearth of educational facilities that accommodate children with autism has pushed desperate parents to open a centre that provides educational and therapeutic skills to affected children.

But that endeavour is also facing challenges – inadequate facilities and resources.

Most autistic children cannot be accommodated in ordinary schools because of their unusual behaviour.

Two couples — the Chinhaires and Tirivanhus — established Pathways Autism Trust and a centre to provide for the developmental needs of the children.

“The centre is an educational and therapeutic facility. We opened the centre in Marlborough and we are using my mother’s three bedroomed cottage. And this was about two years ago. In the beginning it started with two children and six professionals,” founding trustee and programmes director Gordon Chinhaire said.

“We have a rehabilitation technician, psychologist, occupational therapist, therapist and an Early Childhood development (ECD) teacher and the children grew to six and it was a one on one ratio of the professionals and the children.”

Inside a classroom at Pathways Autism Trust. Pic Annie Mpalume

According to Chinhaire, who has 17-year-old autistic son, Tawana, self-stimulating behaviour, and repetitive actions are also characteristics of autism.

They may flap their hands or rock from side to side, they might hit themselves, and they might spin round and round.

“They also have inability to make eye contact, to follow instructions, to take turns, to concentrate, these are all skills we teach them here,” he said.

“They also have group sessions but each of the children has got an individual teacher that works with them and they have different qualifications and professional backgrounds but they were all trained on the methodology that we use here for autism intervention that is called Teach, Treatment and Education of Autistic and Communication Handicapped Children, they were trained on that in South Africa at the Jo’burg Hospital school,” Chinhaire said.

“We have two classes, the juniors and the seniors each child has their own workstation and the desk is set up in a way that the child should work from left to write and from top to bottom, because that is how you read. They work on concrete task, each child has a colour assigned to them, that colour is on where they seat, their locker, their chairs, the cup, the plate and the place mat where they have their food, so that they learn to identify with something that is theirs.”

And they have visual schedules of their routine activities.

The position of the desks are that they must not be facing any window because they get distracted, we don’t put charts or anything on the wall because they have to focus on what they are doing.

“We use a specific kind of sign language that is called ‘Makaton’ designed for children with autism. We also do the visual over verbal learning. Each child has different goals and different priorities and they get evaluated as they go through them,” Chinhaire said.

“With the girl Nicole, part of her routine is self-awareness, rubbing her hands with brightly coloured paint and put her hand either on the board or paper on her desk. She is at such a level of severity that she lacks self-awareness, just her very existence.”

The school also teaches the children arts and crafts, cookery, and basic life skills for them to be independent.

Every year, a specialist and a professor from Germany visit the school for training with the staff and children as well as the community for about two weeks.

The school is however, still in need of major improvements and upgrading.

“It’s important that we get right equipment on the playground, it helps them therapeutically and teaches them to use the right muscles and teach them some of the sensory integration needs that they have. Need a vocational centre, boarding facility, a bus, and other facilities to improve the children’s skills and interests.

“We have put an application for a Memorandum of Agreement that we are recognised as a school but nothing has happened. They did come here sometimes to assess the facilities we have and that was it, so we are just waiting. And the kids slowly grew to six. We got it registered as a private voluntary organisation in 2015. We have engaged the ministry of primary and secondary education.

“We have engaged the World Health Organisation and the Health ministry and they appreciated our effort and agreed that autism had been neglected in Zimbabwe,” Chinhaire said.