Dramatic spiral in kids with autism

THE prevalence of autism in children has increased by a staggering 23% in the past three years and there appears to be no answer as to why this has occurred.

The dramatic escalation – from one in every 150 babies in 2009 to one in every 88, according to the figures released by the Centre for Disease Control and Prevention last years – has also highlighted the dire shortage of care centres in the Eastern Cape and the rest of the country.

In the Eastern Cape there are long waiting lists of more than a 100 people at some centres. The problem is exacerbated by the high cost of accommodating an autistic person, with some institutions charging R5 900 a month.

Autism South Africa director Jill Stacey said: "In 2010 it was one in every 110 babies and then one in every 100 in 2011. This is an abnormal increase in just the last few years and still no one knows what the cause is.

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioural challenges. The condition can affect people in different ways and can range from very mild to severe.

Stacey said there were only three autism specific centres for adults in the country, one in Cape Town and two in Pretoria.

"The others are adult care centres but not autism specific. People with autism generally are difficult to care for and because it is such a complex condition you need specialised care, which is expensive.”

"We often get calls from family members who are desperate and need assistance . . . we estimate there are just under 300 000 people in the country with autism.”

Autism Eastern Cape field worker Sandra Dunstan said because the condition required specialised care, it was costly to open care facilities because it required high staff numbers.

As a result, these children may be locked away in a shack or be left to roam around and play in the streets unobserved. "This is scary because these children are not scared. They do not understand the concept of danger so they may get abused and not be able to speak or tell anyone.”

She said Autism EC recently initiated a support group in New Brighton and was looking at starting more.

The provincial organisation is also opening an adult day care facility in Nelson Mandela Bay, planning to start next month.

Uitenhage couple Isabella and Gerrie Bezuidenhout said they took the initiative to start an adult care facility, House Minette, in 1994 after they travelled the country looking for suitable care centres for their three handicapped children.

"We started with 14 and today we have 32 adults living here,” Isabella said. Two of the 32 adults are autistic while the others are severely handicapped and need constant supervision.

"It costs R54 000 to keep going every month and the majority of that is salaries and food.” The centre has a waiting list of 10.

Aurora Special Care Centre chief executive Tanya Eales said there were 40 children and adults who lived at the residence at the centre for the severely handicapped in Walmer Downs in Port Elizabeth. An additional 65 children and adults attended the day stimulation centre.

"We have waiting lists . . . and we receive enquiries from all over the country but currently we are filled to capacity.”

In East London the situation is also dire, with schools that provide the specialised care autistic children need reporting waiting lists of more than 100 children.

Eastern Cape regional development officer of Autism South Africa Antoinette Bruce-Alexander, who lives in East London and whose son Daniel, 13, is autistic, said all the schools in East London which accepted autistic children had long waiting lists.

While there are no autistic specific primary and high schools, there are two – Parkland Special School in Beacon Bay and Khayalethu in North End – which accept children with lower functioning autism.

Another East London school, College Street Primary, accepts higher functioning autistic children.

"But all of them are full, with long waiting lists, and parents are desperate,” said Bruce-Alexander who started an autistic specific pre-school called Autism Sinethemba in Cambridge for children aged two to six in 2008.

She said parents whose children were only diagnosed with autism when they were five or six faced a five to eight-year school waiting list and were often forced to leave the children with nannies.

She said children who left special schools at 18 were faced with the problem of insufficient care centres for school leavers.

She said although East London’s McClelland Adult Centre for the Handicapped accepted young school leavers with autism, depending on a screening process, there were limited places available in both full-time boarding and day care.

Single mother Nosi Magubeni said she was forced to keep her autistic son Alatha in Sinethemba pre-school until he was almost nine, due to the lack of school facilities for autistic children in East London.

Although Alatha had been placed on a waiting list at Quest in Port Elizabeth four years ago, Magubeni was later told the school no longer had space to accommodate children who lived outside the city.

"I could not give up my job to look after him because I’m a single mom,” she said.

Magubeni said she had "begged” a woman who home schools autistic children to put off her retirement and look after her son this year but she continued to worry about his future.