You are here: Home Read My Articles Corporate Social Investment Lethabo Le Khutso - Autistic Haven

Lethabo Le Khutso - Autistic Haven

From the outside, the attractive brick home in, Pretoria’s middle-class suburb looks pretty much like any other.  Inside extraordinary things are happening. 

Several people sit at a long table, scissors in hand, cutting string beans; one young man works soundlessly on a 300- piece puzzle, while in a separate corner somebody draws. A woman sets eight places at the dining room and pours green and red juice into tumblers taking a sip from the top of each glass before plonking in ice-cubes. Another girl sitting in the lounge repeats time and again “I wish you a merry Christmas, I wish you a merry Christmas,” though it’s February. In the kitchen a tall prepossessing young-man fastidiously prepares a chef’s concoction for lunch.

In the garden, a young man walks about aimlessly flapping his hands. 

What’s so amazing about these seemingly routine activities?;- they are performed by  people with autism at Lethabo Le Khutso, ‘Long Awaited Place of Peace and Happiness’' 

Long awaited certainly, but housing these residents can be anything but peaceful.  This is a home away from home for adults with autism.

Here 15 adults with autism spend each day till nightfall or reside permanently, visiting family on weekends or holidays.  

“Before Lethabo Le Khutso opened it’s doors in November 2002 “there were only two autism-specific centres for adults with autism in South Africa, both of which are in the Cape province Anna Atkins, office manager for the Association for Autism Pretoria (AFA), mother to a son with autism and a specialist on the subject says,  “The only thing one could suggest to parents was to send their children to institutions where they were either locked away, or placed in an environment that does not understand nor cater for the unique needs of a person with autism . It was a terrible choice.  Mothers felt like they were abandoning their children.” 

 Tsoane Mtshali, then past part-time fundraiser for The Association for Autism, also parent to an autistic child, approached The Transnet Foundation, for funding, explaining that the Association for Autism in Pretoria had been battling since mid 1980’s to raise funds for people with ASD (Autism Spectrum Disorder). 

Anna says, “Transnet is a transport company but their corporate social investment programme was so sensitive to the ASD plight that they donated R300 000.00 towards this facility and Autism South Africa matched this donation Rand for Rand. It was a Godsend. We wasted no time in establishing Lethabo Le Khutso, where we provide for the ongoing educational needs for adults with ASD. Here each person is accepted as an individual socialising with their own kin rather than being treated as a pariah - excluded from all activity - and shunned by society.  A child with autism can monopolise a household by his or her need for constant care.  The ideal situation for autism is one-on-one help. If an person with autism isn’t managed properly there can be aggression, manic depression, or violence.” 

“The greatest problem comes when children leave school at 18 and have nowhere to go.  The entire family’s life becomes abnormal. It’s ridiculous for ASD folk to remain at home all the time.” 

“We house people here from Swaziland, Botswana, Lesotho or anywhere else in Southern Africa.” 

 Spreading her palms, Anna says, “This is a pandemic. It’s bad stuff,” Statistics now show that one child out of every 158 under the age of six is affected by autism  – and closely related disorders like Asperger Syndrome - with no good explanation.   If even half of these children need support as adults, one of every 316 adults will need specialised residential care.  Figures published in the USA show a worldwide increase of 300% over a 5-year period.” 

“Transnet’s donation of money to establish this facility was a Godsend, but we have to charge monthly residential care of R2 750 for food, supervision and stimulation. AFA offer assistance, but we cut costs to the bone. And, still many parents can’t afford this.  The Government doesn’t subsidise us at all.” 

“There is just not enough awareness of the explosion as regards the incidence of autism. Think of AIDS in 1986. It was just something Rock Hudson died from, an unknown disease. It was thought to arise as a gay promiscuous disease. For the longest time society was in denial.  . The public seem to know very little about autism other than it is a disability. 

Nalini and Sagie Moonsamy are parents who understand ASD and its manifestations all too well.  For this couple the correct facilities for 15-year son Tristan are as essential as the air they breathe.  

The Moonsamy’s even relocated from Durban to Pretoria so Tristan could be schooled at UNICA, one of South Africa’s largest school and hostels in the country for children with ASD. 

Tristan’s story has a common thread to that of other autistic and Asperger Syndrome children. : 

“He was a beautiful baby,” smiles Nalini, teething and crawling really early, at five months.  Apart from infections as an infant and a mild convulsion when he was six months, he was perfect. Everybody stopped and admired him.  At eighteen months he got his measles vaccine and he immediately had convulsions lasting for 15 minutes or more.   He developed high uncontrollable temperatures and we had to place him in hospital for two weeks where he was medicated with Valium to avoid seizures.  . Then he was on Epilium medication for quite some time, which regulated the attacks. At four years we stopped medication. But Tristan didn’t comply with the norm. It was difficult for us to socialize because he was so disruptive.  If we crossed the road he wouldn’t stop first or listen to me.” 

“I was only 28- years. He looked perfectly normal and I never knew about autism. As a mother you think everything is okay.  If only I was more informed.  He had peculiar eating habits. He only ate the outside crust of crisp toast or pies, and he loved chocolates, biscuits, chips and coke.  He screamed when he had to go to crèche. One day he lay down with the dog in the kennel after crèche.” 

“At three years, for instance, he was saying words like ‘open the window’. But, I didn’t know what he meant because it was always inappropriate. I knew there definitely was something wrong. He didn’t speak properly at five.” 

“When he got to nursery school they couldn’t handle him because he tore up the books and he screamed, not wanting to play with other children and he developed peculiar play habits enjoying anything stick-like, such as lampshades or umbrellas. For a time this was cute. Then his fascination with sticks became a fixation. He wouldn’t be without his stick. He broke lamps in my mother’s home. He would also take a stick and hit the ceiling fan continually. 

“I was studying at Unisa, at the time and my husband and I were looking for a psychology book in the library.  Coincidentally, a book simply called ‘Autism’ fell from the shelf to the floor. I picked it up, and we became totally engrossed, reading the book from cover to cover. Tristan fit every criterion. An educational- psychologist confirmed the diagnosis.” 

“We had just bought a new home in Durban. We sold up immediately, resigned from our jobs and relocated to Pretoria where he attends UNICA School.  It was hugely traumatic. But he is with 80 other kids with the similar problems, forty five of them boarders.” 

“Tristan has improved so much; he can do a 300 -piece puzzle. Still, despite medication each year he develops more autistic behaviour. Nowadays he babbles, flaps his hands compulsively unless stopped and is hyper active.” 

“I can tell he sometimes understands when I instruct him to go to fridge or take washing out the machine. But, you can never have a conversation with him.” 

“You can’t allow ASD children to control the home. Lately he paces up and down. Sometimes you feel he is walking on your brain. I have learnt to use his fixations as a reward. ‘You can flap now,’ I tell him.”  Nalini continues, “Autistic children have to have constant rigid routine and to be productive.  But, autistic children need constant care, even when adult. So we placed him in Lethabu Le Khitso for afternoon care and he will stay on there when he leaves UNICA at seventeen.  We will work as hard as is necessary to afford it because he is happy, occupied and with similar people.” 

The anguish endured by the Moonsamy’s is all too familiar to tens of thousands of families around the world as with seeming suddenness cases of ASD skyrocket.  

Small wonder parents are banging on the doors of psychologists and psychiatrists in search for remedies. 

Jill Stacey National Director Autism South Africa and parent to a 19-year son with ASD explains, “ASD  affects people of all job categories socio-economic classes, colours, nationalities races and religions.”  Many experts believe the increasing numbers are a by-product of better diagnosing and a growing awareness, while others are convinced that the numbers are increasing rapidly, but don’t know why.” 

Jill, who has studied autism since the diagnosis of her son, says the problem is now more common than Down Syndrome,childhood cancer and Juvenile Diabetes. It is by far the most prevalent of all childhood neurological disabilities, affecting four times as many males than females. 

Government support for The Disability Sector does not provide anywhere nearly enough facilities or services for people with autism.  There are only five Government assisted schools in South Africa for learners with autism and no government assisted centres for adults with autism. 

Small wonder parents are banging on the doors of psychologists and psychiatrists in search for remedies. 

So what exactly is Autism Spectrum Disorder? 

According to Jill one could write a dozen encyclopaedias on the subject. No two people with ASD are the same. The presentation of ASD varies to such a huge extent creating a very broad spectrum. 

 It’s a lifelong, extremely complex and often devastating disability, stemming from multi-factorial origin and resulting in biochemical dysfunction of the brain as well as affecting normal brain development. 

ASD is greatly under-estimated. It can range from a person being severely mentally impaired, to those who present with lower to middle intellectual functioning, with mild to moderate autistic traits.  Then there are people affected by Asperger Syndrome - who have a normal or superior intellectual ability - but still are most definitely adversely affected by the debilitating autistic traits. 

“Kanner” or “classic" autism is ASD people who usually have mental impairment as well as autism. There are people as explained above who have Asperger Syndrome and there is the “Savant” form of autism, where this person has one area with a “superhuman” ability, such as looking at a building for literally a couple of minutes and then being able to draw that building exactly, but still cannot perform day-to-day activities adequately. The Savant form of autism is found in approximately 7% of ASD population... 

ASD sufferers are affected to different degrees.  But, every person with ASD Syndrome is afflicted with the ‘Triad of Impairments.

Their quality of development is impaired in the three following areas: 

Imagination: Due to brain dysfunction, an person with ASD can become trapped by rigid though patterns and behaviours, a limited range of imaginative activities and poor understanding of day- to- day concepts.

Children with autism often lack imagination to play with toys like other children.  

Language and Communication skills: 40% of people with ASD never speak nor understand the verbal word. Those who speak sometimes talk compulsively. Even people with autism who appear to speak well still do not really cope adequately with reciprocal communication.. 

Social Interaction:  Due to altered chemistry within the brain; they literally cannot understand other people’s emotions, reactions and the complexity of social relationships. This results in people with ASD often being rejected by society, which results in these people sometimes becoming aloof, confused and isolated from those around them, forcing them to live in their own world filled with ritualistic behaviours. 

In addition, people with ASD often have heightened sensory perception resulting in the world around them becoming an over-bombardment of stimuli. 

Autism is often referred to as an “invisible” disability in that it does not display with a outward signs and autism usually manifests around 18 months to 3 years. It appears that children could be genetically predisposed to autism with certain environmental factors triggering their disability.  Some believe that their genetic pattern results in an impaired immune system causing chronic ear and other infections. Certain children with autism don’t appear tohave the correct enzymes in their digestive system to properly break down certain proteins found in wheat and dairy products and the waste products of the incomplete food breakdown adversely affects the brains’ chemistry. 

Removing Wheat and Dairy Products from the diet has resulted in a decrease in the symptoms in certain children. 

Rusty and Tsoane Mtshali’s son Thato was a perfectly normal baby “an angel with the most beautiful eyes.” But, he had chronic inner ear infections and stomach problems, and he struggled to balance and walk. As a mother with two older sons and a teacher with a psychology degree Tsoane was bothered when he didn’t reach certain developmental milestones.  He didn’t walk or say ‘mama’ at a year (he still doesn’t talk), hated being cuddled although the Mtshali’s persevered until he began to enjoy affectionate displays. 

Tsoane associated chronic inner ear infections as the cause for his not walking. She visited the ENT specialist, and after completing a course of medication and having tonsils and adenoids removed he walked. But then he never reacted to loud noises. The Mtshali’s knew that he was not deaf because he responded to certain “sounds”, like adverts on TV, and brain CAT scans and hearing tests all appeared normal. 

They were later referred to the Transvaal Memorial Institute (TML) where he was diagnosed with autism.  Tsoane says, “Rusty and I were devastated, but at least we had a diagnosis.”

“Thato is eight now. Shopping is a nightmare.  He has no idea of “acceptable” behaviour. He grabs whatever he wants and runs out, leaving people thinking he is stealing, particularly as he looks absolutely normal. He has no sense of other’s feelings and can push his way through a crowd without considering people around him. Standing in a queue is a nightmare. He can throw himself across the aisle screaming on the floor. It takes hours for us to leave a shop if he is agitated.” 

“At one time he started hitting.  We strategized; instead of hitting back we ignored him, and ultimately he gave up.  

“I have had to leave my full-time job to accommodate the entire family and am grateful because I have a supportive husband and family. 

“I have since discovered other children with autism in the area and offer information as our communities don’t really know about it. People believing in witchcraft think the child is bewitched because they seem normal at birth. Some people write these children off as mentally retarded. This is not always the case.” 

“Like other autistic children Thato carries only one favourite toy around with him, eats only certain foods and sticks strictly to routine. He loves spinning objects like the washing machine and he runs round sort of spinning himself. He loves merry go-rounds, and he flaps his hands even when sitting quietly.” 

When Thato was potty trained Tosane says they almost threw a party. He remained in pampers till he was six years old. 

“People take normal milestones for granted. It took seven years to teach him to wave goodbye. I only want him to cope with basic life situations and skills like recognising red and green robots. 

“There is only one major autism-specific public school in Gauteng. The Government must extend a hand for these souls with autism”. 

“My prayer is that should see I outlive Thato because I worry what will happen to him if he is ever alone. I thank God for the Transnet Foundation and Autism Association’s Lethabo Le Khutso.  We need dozens more even as day care or weekly boarding centres. People with autism live a normal lifespan needing life-long care and facilities. Who will care for all these ASD children when they grow into adults?”  



Most of us have our children vaccinated for mumps, measles and rubella, but there are people who believe that this vaccination may be responsible for triggering autism in 1 in every 10 children who manifest with autism. Could this be true? Many parents of children with autism  believe the answer is “yes”.

They have heard of too many cases of babies who were perfectly normal until they got their measles, mumps and rubella (MMR) shot and then had tantrums, high temperatures, losing language skills and “tuning out”. Most of these  parents swear their children were born normal, though they had irritation of the bowel and perhaps chronic infections. But, after receiving their MMR vaccine they lost all speech and rapidly deteriorated into a world of ASD. 

Ask doctors the same question and you will be sparking what has become an international debate.  Most doctors will cite evidence for The World Health Organisation and the Govt. Health Depts. Saying vaccines give no explanation for causing autism.

But, possible scientific evidence against childhood vaccines came in 1998 from gastroenterologist, Dr. Andrew Wakefield, formerly of the Royal Free Hospital in London. 

Dr. Wakefield feels that autism stems from a severe immune reaction to something in the vaccine. He published a paper showing that immunised children with autism and bowel disorders have higher levels of the measles virus in their intestinal tissue than normal children do. The Measles vaccine in the intestinal tissues does not necessarily mean that the virus – or the vaccine – causes autism, but it seems that possibly 1 in 10 children with autism seem to start manifesting the signs of autism within a week of receiving the MMR vaccination. 

Could it be that ASD only appears at about 18 months, the exact time the children receive their MMR vaccination?

 Dr. Wakefield says, “No”. Children with weakened immune systems and bowel problems were prescribed many courses of antibiotics when they were babies and were vulnerable at the time of their MMR vaccination.  The antibiotics had destroyed the “necessary good” bacteria in the bowel.  The measles jab was the final pathogenic insult.  It destroyed lining of the gut wall and weakened the immune system further causing inflammation of the bowel. Bowel inflammation caused the bowel to leak. The leakage caused the vaccine to travel through he bloodstream and harmful bacteria and toxins travelled to the brain. Wakefield refused to budge from his findings, costing him his position at the hospital and great damage to his career. 

The British Dept. of Health, Federal Drug Administration, World- Health Organisation (WHO) denied the claims. 

Mr Paul Shattock (UK) who has received Order Of The British Empire (OBE) for his work in the field of autism  openly agrees with Dr. Wakefield. . “This is not a game. Parents have reason to be concerned.  Nowadays children are jabbed seven times by vaccination by eighteen months. Some children react badly to vaccines”. 

He reports of children in the UK who developed normally till twelve months, but on receiving their MMR vaccination, within a week or so, lost eye contact, speech and “became wooden”.   

Moreover, many vaccinations that are given to children contain a mercury preservative named Thiomersal and children with ASD are unable to metabolise this heavy metal and thus is adversely affects the body’s functioning.”

Mr Shattock remarks bitterly, “Thiomersal has now been banned in the USA by the Federal Drug Administration.  The drug companies may well have sold their excess stock to “Third-World” countries such as South Africa.”

Mr Shattock says that fortunately in South Africa it is possible to obtain measles vaccine on its own which is far safer than the combined MMR and that the combined MMR is not necessary at all except for profits for drug companies”. 

South Africa’s Professor Barry Schaub, Head of Institute for Communicable Disease disagrees with Mr Shattock vehemently.  “There is no evidence that the MMR vaccine causes ASD.

Any findings are purely circumstantial at best,” he says.. 

Mr Shattock refuses to budge.  “Research shows the risk for ASD is five times higher for in children who have received the MMR vaccination. You can’t tell me it is pure coincidence that children get a vaccination again at four years and a number go down with ASD then; 11% of children I tested developed ASD after their MMR vaccination. 

“Failing to prove something can happen is not the same as proving it doesn’t,” he stresses. 

Jill Stacey of Autism South Africa also believes that there could well be a link. “Too many parents have reported almost identical stories and within such a tight time frames of giving their child the vaccination..

“Nobody claims you must not vaccinate your child, especially as regards the measles vaccine, but we believe the parents must be offered the CHOICE of separating the implementation of the vaccines. Combining the vaccination may well be proven hazardous”. 

Pat Mathews, president of the World Autism Organisation, and father of an adult son with autism has the last word. “If your child just had the MMR and was screaming all night long after it, that will stick in the parents minds. There should be medical personnel available to talk a parent through all this and to bring some logic back into it. Parents are worried and if they don’t get support they are going to jump to conclusions.”  

P.O. BOX 84209
TEL: (011) 486 3696 / 4037
FAX: (0110 486 2619
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Web Address:


Contact Lana @ The Writer Studio

Get in touch if you would like Lana to write for your business or publication