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Not a school in sight: Autistic children travel 500 km to learn

A mother’s love led her to South Africa to find a school for her son with autism.

On a hot summer day in December, Limpho Malebina Shale gave birth to her son at Makoanyane Military Hospital in Lesotho’s capital, Maseru.

Lebina was her first child.

But the joys of motherhood were marred when Shale started noticing there was something different about her baby. That was 18 years ago, when Lebina was six months old. He wasn’t reaching his milestones.

Lebina couldn’t sit up by himself. He didn’t babble and couldn’t imitate the sounds he was hearing. Most babies in Lebina’s age group could.

“He was a big baby but he wasn’t developing like others,” Shale recalls. “People would tell me it’s because baby boys develop slower than girls — so I stopped worrying.”

But as Lebina grew older, his mom became anxious again.

On his first birthday, the boy was yet to utter a single word.

“He became so aggressive and would often bang his head on walls,” she remembers.

Shale took her son to their family doctor in Maseru who reassured her that she shouldn’t be worried. “He told me there was nothing physically wrong with him.”

When Lebina was a toddler, Shale enrolled him in a local daycare centre near their home.

But he was still not talking.

It would take another seven years and countless more visits to doctors before Shale found out that her son was autistic.

Autism spectrum disorder is a group of complex disorders of the brain that impairs a person’s ability to communicate and interact with others, explains Autism South Africa’s education facilitator Vicky Lamb. The non-profit organisation works with those affected by the condition.

People with autism learn differently from others — their learning, thinking and problem-solving abilities can range from gifted to severely impaired. The condition has no single known cause.

Given the complexity of the disorder, and the fact that symptoms and severity of the condition vary, there are probably many causes, says Lamb.

She explains: “The condition doesn’t present itself in the same way in all people — it’s a huge spectrum. Most children may show symptoms, like no babbling by 11 to 12 months, struggling to smile or make eye contact when interacting with people and odd or repetitive ways of moving their fingers or hands.”

Parents will often start noticing symptoms in the first two years of their child’s life, she adds. But some parents are unable to make the link between the symptoms and the condition.

Beyond the spectrum: No one knows how many children in Lesotho are living with autism but one thing is for sure, there are only two schools that can accommodate learners in the country.

Shale enrolled Lebina in a school for pupils with disabilities in Maseru when he was five years old. At the time, his mother didn’t know he had autism.

“I thought the special school would help him, but he struggled to play with other children or follow instructions from the teachers,” she remembers. “Sometimes when I went to fetch him in the afternoons, I would find him sitting by himself in a corner. His teachers said that was safer for everyone else in the class.”

Another parent at the school suggested to her that Lebina may be autistic. Shale had never heard the word.

Weeks later, on a Saturday afternoon while relaxing at home, Shale was reading an edition of a clothing store’s monthly magazine. There was an article on autism.

“The things that were written in the magazine were the same things my son was doing,” she says. “He was banging his head against walls, he didn’t speak and he was very aggressive.”

She later contacted the organisation that was mentioned in the article that helped her get an appointment to see a doctor in Pretoria.

Shale and Lebina left their home in Stadium Area village in Maseru and started their six-hour journey to Pretoria in search of the answers she had desperately been looking for. After several trips between Maseru, Johannesburg and Pretoria — about 500km each way — Lebina was finally diagnosed with autism spectrum disorder at the Charlotte Maxeke Academic Hospital in Johannesburg.

“At first I was scared, but I was more relieved to know and understand what was happening. For me this meant that Lebina will be able to get help and he wouldn’t suffer so much anymore,” Shale says.

The doctors at Charlotte Maxeke told her that her son can learn to live with his condition if he attends a school that has specially trained teachers to help.

But there was no public school for autistic children in Lesotho.

In December 2010, just after Lebina’s 10th birthday, they relocated from Stadium Area village so that he could attend the Johannesburg Autism School.

Shale and Lebina stayed in a small cottage with her mother who was a domestic worker in Sandton. She soon found casual cleaning jobs that helped her save enough money to rent a place of her own, and for school fees and uniform for Lebina.

“We had no place to stay. I didn’t have a job,” she remembers. “But I had to do this for my son. Mmangwana o tshwara thipa ka bohaleng [A mother will do anything in her power to protect her child].”

Learners at the Johannesburg Autism School need an organised and constant schedule to provide them with a stable, predictable learning environment. (Hanna Brunlöf)

Very few people know about autism in Lesotho, says Makhetha Moshabesha, former chairperson of Autism Lesotho. “When we do outreaches we meet people who tell us they’ve never heard of this condition before.”

The organisation, mostly made up of parents of autistic children, was formed in 2011 as a support group for encouragement, comfort and advice. Over the years it evolved into an advocacy organisation that urges the Lesotho government to implement “autism friendly” policies. It recently merged with the Intellectual Disability Association of Lesotho to combine their efforts for Basotho people with intellectual disabilities.

Moshabesha is the father of a 14-year-old autistic boy who attends one the most inclusive schools in the country, he says.

But it is a private school.

“Poor families can’t afford private schools,” he explains. “What happens to their children? The public schools are not doing enough to cater for learners with disabilities.”

A 2013 World Health Organisation report estimates the global prevalence of autism to be one person in 160, which means that 0.3% of people in the world have the condition.

Another study, published in the Autism Research journal in 2012, estimates that 62 out of every 10?000 children — about 1% of all children born — have autism.

There are, however, no studies that have measured how many people in sub-Saharan Africa are autistic because of the “lack of standardised screening and diagnostic tools validated for African populations”, a 2014 study published in the Intellectual and Developmental Disabilities journal has found.

Moshabesha says the Lesotho government does offer the organisation support through donations, but this alone is not enough.

“Those who have money will enrol their children in South African schools,” he explains. “But their children have nothing to return home to when they are done with school. We [Autism Lesotho] want a centre for autistic adults so that they have something to look forward to after finishing school.”

Lebina Shale (18) is able to speak, read and write after seven years of attending the Johannesburg Autism School. (Dylan Bush)

About seven years ago, Shale moved to a block of flats in Hillbrow, within walking distance of her son’s school. Her husband and their other two children have also moved to South Africa.

“The first year was difficult. Lebina would run away from school,” says Shale. It would cause her endless concern and she would search for her son for hours on the bustling streets of the Johannesburg CBD. “But as time passed, he became more comfortable and the running away happened less and less.”

Lebina was not the only person who was learning to live with his condition. The Shale family was also getting to know more about autism and how to care for a family member living with autism.

The Johannesburg Autism School offers monthly Saturday workshops for families, says school principal Ronel van Biljon. “These sessions are to connect parents together so they don’t feel alone,” she explains. “It can be very challenging to raise an autistic child, but their wellbeing is dependent on their family’s ability to take care of their needs.”

Shale recalls: “At first Lebina could only say “Mme” [Mother] and “Ke lapile” [I’m hungry]. Then he started hurting himself less and was getting used to a routine.”

Every weekday at 5am the Shale household’s day begins. Lebina is always the first one up. He is now 17 years old, with the broad-shouldered of a man. He likes music, taking walks at the local park and watching wrestling. Lebina even works as a packer at their local supermarket during the school holidays.

“He has come a long way,” says Shale as she watches her son write in his school working book. He can now read and write. “Finding out about his condition was very shocking, but learning about it changed our lives for the better.”

She smiles.

“I discovered another side to my son, a side I had never seen before.”

[Update 11:47 22 June 2018] 

The number of autistic people in Lesotho is unknown, says Limpho Lipholo, a director in the ministry of social development. Only two public schools in the country accommodate autistic learners and these are located about 130km from Maseru.

“The government of Lesotho is in the process of developing data base for not only number of autistic people but for all types of disabilities,” Lipholo says.

Pontsho Pilane is the communications manager at Soul City Institute for Social Justice. Pilane was a health journalist at Bhekisisa from 2017 until 2019.