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.
FACTS ABOUT THE CONDITION
WHAT IS AUTISM?
According to Autism SA, autism is a lifelong, complex condition that occurs as a result of disordered brain growth, structure and development. Autism is believed to stem from a genetic predisposition triggered by environmental factors, and affects four to five times more boys than girls.
There are a vast number of ways a person can manifest their autism. As a result this condition is now referred to as Autism Spectrum Disorders (ASD).
TYPES OF AUTISM
There are two main types of autism on the spectrum; Kanner/ classic autism where in addition to the autism, there is also intellectual impairment.
Statistically, it is considered that 76% of people with autism have Kanner/classic Autism (i.e. also have intellectual impairments in varying degrees), whereas 24% of people with autism do not have any intellectual impairments, nor speech delay in early childhood years. These people are classified as having Asperger’s syndrome, displaying a “normal” or more than often above average intellectual ability.
TRIAD OF IMPAIRMENTS
All people on this spectrum are affected, in different degrees, by the triad of impairments in:
1. Language and communication: 40% of people with Kanner/ classic autism never speak nor fully understand verbal communication. People with Asperger’s syndrome with seemingly fluent speech will have areas of their communicative abilities that are adversely affected – for instance extreme difficulty in reading non-verbal communication such as facial expressions.
2. Social interaction: For a person with autism, the area of the brain that enables us to understand other people’s emotions and feelings is altered and they cannot fully understand the complexity of the thoughts of people in social interactions.
3. Imagination and creative play. A person with autism usually becomes trapped by rigid thought patterns and behaviours and has difficulty understanding abstract concepts and day-to-day conversational jargon such as “It is raining cats and dogs.”
Signs in a young child
No babbling by 11 months of age;
No simple gestures by 12 months (e.g. waving goodbye); No single words by 16 months; No two-word phrases by 24 months (noun and verb – e.g. “baby sleeping”);
No response when name is called, causing concern about hearing;
Loss of any language or social skills at any age;
Rarely makes eye contact when interacting with people; Does not play peek-a-boo; Doesn’t point to show things he/she is interested in; Rarely smiles socially; More interested in looking at objects than at people’s faces; Prefers to play alone; Doesn’t make attempts to get parent’s attention; doesn’t follow/look when someone is pointing at something;
Seems to be “in his/her own world”;
Odd or repetitive ways of moving fingers or hands;
Oversensitive to certain textures, sounds or lights
Lack of interest in toys, or plays with them in an unusual way (e.g. lining up, spinning, opening/closing parts rather than using the toy as a whole);
Compulsions or rituals (has to perform activities in a special way or certain sequence; is prone to tantrums if rituals are interrupted), and
Preoccupations with unusual interests such as light switches, doors, fans, wheels.
Autism-specific schools, centres
❑ St Barts Academy in Humerail: School fees are R2 800 per month and the school accepts children on all levels of the autism spectrum from the age of two to 17. The school only accepts four children per class and eight for the entire school.
❑ Autism Eastern Cape’s Early Intervention Centre in Walmer: There are 15 children at the school currently and school fees are R2 050 per month.
❑ Victory Kids is an Early Intervention Centre for children with special social and educational needs aged between two years and seven years old.
There are currently 17 children at the school with three more on the waiting list. School fees are R2 900 per month.
❑ Quest School currently has 70 pupils with a waiting list of 25. School fees are R600 per month.
SCHOOLS AND CENTRES FOR PHYSICALLY AND MENTALLY HANDICAPPED:
❑ Aurora Special Care Centre for the severe and profound mentally and physically handicapped. The centre accepts those on the lower levels of the autism spectrum.
Residence is R5 900 per month for adults and children, including meals but excluding diapers. The residence is full at 40 people and 45 on waiting list.
❑ Day Stimulation Centre is R790 per month for those who can afford it, but the cost is based on the family’s financial position.
The centre runs from 8am until 12pm and there are also aftercare and holiday-care facilities. The centre is also full at 105 people until May.
Paddy House on the premises is also full with 12 mildly handicapped adults and seven more on the waiting list.
❑ Cape Recife High School is for higher-functioning pupils with autism, cerebal palsy and learning disabilities.
School fees are R1 300 per month and hostels were only for out-of-town pupils at R5 100 per term. The school does not accept applications and the Department of Education screens pupils and then places them at the school.
❑ Elsen Academy is a private special-needs school which caters for children from Grade 1 to Grade 12 in Central:
School fees are R3 500 per month with waiting lists for three grades.
❑ Ithemba Special Day Care Centre in Windvogel: Centre manager Maureen Miles said the facility accepted children of school going age up until 18 years old with severe mental and physical disabilities, including children on the lower levels of the spectrum.
She said the centre had reached its limit of 44 pupils and had five more on its waiting list.
The centre receives R17 per day per each attending child and school fees are R100 per month, which includes breakfast and lunch but not transport costs.
❑ House Minette provides a home for mentally challenged adults in Uitenhage:
There are currently 32 adults aged between 18 and 80 living at the home with 10 more on the waiting list. About 10 people have no source of income and no family paying towards their accommodation, but the other residents pay R2 700 per month which includes food, accommodation and care.
❑ McClelland Adult Centre for the intellectually impaired in East London: Fees – R507 per month; Lunch – R171 per month, and Transport – R276 per month. (Lunch and transport to the centre is optional.)
❑ College Street Primary in East London: R550 per month.
❑ Khayalethu Special School in East London: R300 per year.