A wave of autism

By admin
29 May 2009

Today it seems we are aware of more autistic children than ever with a sharp increase in the number of cases. Yet thousands of cases are undiagnosed or recognised at a late stage because doctors and parents aren’t familiar with the symptoms

By Elise-Marie Tancred

Seventy years ago autism didn’t have a name. Forty years ago it was so rare most doctors hadn’t seen a single case. Today, however, an estimated one child in every 150 has some form of autism – more than those suffering from cancer, Aids and diabetes combined.

In South Africa about 5 000 new cases are diagnosed every year. Schools geared especially for autistic children are full to bursting. “No one knows why autism has increased,” says Professor Lorna Jacklin, chief of paediatrics at the University of the Witwatersrand.

Some experts say it’s simply because the definition of autism now includes more conditions than before while others believe environmental factors are to blame.

While experts are at odds over the causes, they agree on one aspect: autism cannot be cured. True, it’s not fatal but that doesn’t make the condition any less terrifying. Autism doesn’t just affect the child. It also drastically changes and challenges the family. Some autistic children need around-the clock supervision and intensive therapy makes exhausting demands on parents’ time and financial resources.

The helplessness experienced by parents who can’t understand or assist their children is clear in this cry for help from a Stellenbosch psychiatric sister, Natheema Toffar: “I wanted to kill my son! He didn’t sleep at all for three months. Every night he’d flush the toilet over and over again. He smacked his ears until they bled and pushed a pen through his tongue. Doctors couldn’t make a diagnosis and we were told we were bad parents who needed parenting classes . . .”

What is autism?

Many parents share Natheema’s frustration when doctors and teachers fail to understand what’s wrong with their children. But the symptoms of autism can be both wide-ranging and confusingly vague.

“Autistic kids are often demanding and don’t look you in the eye. But my ten-year-old son, Wynand, has always made good eye contact and was actually an easy-going toddler,” says Joan van Zyl, a journalist in Cape Town. “That’s in spite of the fact that he was born 16 weeks prematurely and has developmental delays.

“But when he was three I noticed he enjoyed walking round in circles while looking up at a bunch of keys he was shaking. I just thought he was fascinated with keys. “Then, when he went to nursery school, a teacher noticed he liked walking alone in the playground, babbling to himself and fluttering his hand above his eyes,” Joan says.

His developmental problems demanded Wynand be under the constant care of a team of experts. But none of them mentioned the word “autism” until he was eight – despite the fact he showed the three typical traits:

1 Social problems

While most kids love interacting with other kids, autistic children are more interested in objects. You don’t usually see them playing with others in the playground – they’re more likely to be off to one side, engaged in repetitive and sometimes peculiar behaviour.

2 Communication problems

In some casesautistic children are completelyunable to talk. In othersthey start talking late or their speech is odd and repetitive. They also have problems communicating non-verbally and almost never play games involving the imagination. “Wynand loved toy cars but he never pretended to be driving them around. He’d line them up neatly in a row,” Joan says.

3 Behavioural problems

Autistic children can become so completely obsessed with a subject or an object that they focus on nothing else. They can also get stuck in a specific ritual, like first tapping on a bedpost and arranging their soft toys in a particular order before getting into bed. Sometimes they perform repetitive actions – for example, rocking back and forth – or, like Wynand, flapping their hands. (This is called “stimming”.) They can also be hypersensitive to certain sounds, smells, tastes and textures.

Natheema realised something was seriously wrong on her son’s second birthday. “When everyone started singing Happy Birthday, Fuzli-Nur crawled under the table, smacking his ears and rocking. I tried to calm him but his eyes were empty.”

She sought help from a paediatrician and ended up being sent from pillar to post for 18 months. The boy needs discipline, one doctor said. When they finally saw a neurologist, autism was diagnosed.

“It makes me furious to think of all the precious time we lost – all the trauma we went through. My husband took so much time off work to take Fuzli-Nur to doctors, he lost his job.”

There’s still too much general ignorance about autism and too little training among medical personnel, therapists and teachers, says Jill Stacey, the director of Autism South Africa (ASA). “This prevents autism from being correctly diagnosed and treated.”

What can you do?

There is much debate about the best way to help autistic children but one thing is clear: early treatment aimed at the improvement of language and social behaviour delivers the best results.

“Although autism is a lifelong condition and theoretically can never be cured, over 50 per cent of children who begin therapy at two years of age or earlier can be off the autistic spectrum within a few years and can even integrate into mainstream schools,” says Annalies van Rijswijk, the director of Snap (Special Needs Adapted Program), one of South Africa’s top programmes for autistic kids.

But a one-size-fits-all treatment regimen doesn’t work, as each child has his or her special needs.

Everything from speech and occupational therapy to specially developed programmes, such as programmes that help children with sensory problems, can be used.

One of the most successful programmes is intensive one-on-one therapy that improves language and social skills. Fuzli-Nur received this treatment from Snap.

“Within a week he could sit on a chair and look me in the eyes,” Natheema says. “Today he talks in full sentences, is able to count and knows his shapes and colours. “He’s ready for school – my son who ‘experts’ said was uneducable and would never talk.”

But the treatment is no quick fix. Sometimes 40 hours of intensive therapy a week for several years is required. This of course costs a fortune. Jeannie Adams of Cape Town, whose son Michael (7) is autistic, says she and her husband took out a second mortgage on their home to fund Michael’s years of therapy.

“But it’s been more than worth it. When he was two I had to give up working as a fashion designer because his rages frightened my clients. But today he can control his behaviour really well and can even have a meal in a restaurant. He’ll probably never be able to play freely with other kids, but he understands the social rules.”

What about medication and diet?

“No one likes medicating a child but sometimes it’s essential,” says Jana Forrester, a psychologist at the Vera school for autism in Cape Town.

The medication doesn’t treat the condition itself but rather some of the behavioural symptoms. Risperdal, an anti-psychotic, and antidepressants such as Prozac and Zoloft are commonly prescribed for autistic children. Risperdal improves behavioural problems while the antidepressants help with anxiety and depression.

Anxiety is one of the reasons autistic children exhibit obsessive compulsive behaviour: the repetitive actions and strict rituals suppress their fears and make them feel more in control.

Many parents also monitor their children’s eating habits. Jeannie, as well as Maria Grosskopf, a South African living in the US whose youngest daughter, Tessa (7), is autistic, both noticed an improvement in symptoms after removing gluten, dairy products and sugar from their children’s diets.

But doctors are still hesitant to recommend this eating plan as it hasn’t yet been scientifically proven. Nevertheless Snap’s Van Rijswijk says she witnesses daily how cutting out these food types can dramatically improve symptoms within 48 hours.

“We’ve also found autistic children benefit from supplements such as zinc, magnesium, calcium, vitamin B6, vitamin C and the omega oils,” she says. “Some people believe probiotics should also form part of a treatment programme.”

Meat, chicken, oil, vegetables, fruit, rice and potatoes are fine, as are gluten-free pasta and bread. Jeannie has found rice milk to be the best alternative to cow’s milk. Many gluten-free products can be found at supermarkets and health stores.

What causes autism?

According to Professor Jacklin, there is no proof yet that factors such as pollution and diet cause the condition. Fears that MMR vaccinations against measles, German measles and mumps cause autism were also finally laid to rest in February this year when a special court in America found no connection.

“Of course, you look for that one thing to which all autistic children have been exposed in order to explain the condition. But we haven’t yet found the key,” says Dr Birgit Schlegel, paediatric neurologist at Cape Town’s Constantiaberg Medi-Clinic.

However, it seems that the most important causes of autism lie within – rather than outside – the body. It is thought a certain cluster of genes could trigger autism. These genes, as well as the belief that autistic traits could be inherited, are now being investigated further.

Every day researchers learn more about how the autistic brain works and there is talk about the immune system playing a critical role in the development of some kinds of autism. In the end, it is likely scientists will identify not a single cause, but a whole range of factors. Ultimately, we can only hope these lead swiftly to new solutions.

According to reports in Time magazine, the chances of more effective treatments for autism – and perhaps even anti-autism medications – within a decade are excellent.

Until then parents will have to depend on therapy, behavioural control, symptomatic medications and diet.

“But in the end,” says Maria, who has tried various treatments to help her child, “the three most important things are time, patience and perseverance.”

The autism spectrum

While many autistic people can’t talk at all or only repeat songs and sentence fragments, others can speak for hours in sophisticated language about subjects that interest them. In the same way, autism sufferers range from being seriously mentally challenged to intellectually brilliant. Sometimes symptoms only become apparent after a child’s second birthday. In fact it’s more accurate to talk about autism spectrum disorders (ASD) than autism, because there are five varying conditions on the autism spectrum.

1 Autistic disorder

This is the classic form of autism: children live mostly in their own world, don’t make eye contact or point at things and ultimately fail to respond to the outside world. Some kids are also mentally disabled.

2 Rett syndrome

This is rare and affects only girls. They develop normally until they’re between six and 18 months old, then they stall or deteriorate. They struggle to communicate, their hand movements are peculiar – for example, they wring their hands – their growth is slow, they battle to walk, they have poor co-ordination and they can have fits and be seriously mentally disabled.

3 Childhood disintegrative disorder

Children develop normally until they turn two or three and then their development deteriorates. It’s a rare form of autism that is sometimes accompanied by epileptic fits.

4 Asperger’s syndrome

Many South Africans heard of this form of autism for the first time when sufferer Daantjie Badenhorst rocked the television quiz show Noot vir Noot with his incredible musical knowledge. People with this condition have an average or above-average intelligence and often an obsessive interest in one subject. Because the child’s language development is usually excellent, many parents don’t realise something’s wrong until social and communication problems surface when the child starts school.

5 Pervasive development disorder – not otherwise specified (PDD-NOS)

This applies to children who show some but not all of the symptoms of autism. It’s one of the most confusing diagnoses on the spectrum but one that applies to many kids. One doctor will diagnose such a child with autism while another will not.

How do I know if my child is autistic?

If a child between the ages of two and five exhibits many of the behaviours listed below, he or she could have autism. If your child has only one or two of these traits, there’s probably no cause for concern. But a combination of these behaviours or behavioural patterns that are truly out of the ordinary should be discussed with a doctor. Ask your GP for a reference to a neuropaediatrician. If there is no-one available in your area, you could go to a general neurologist, general paediatrician or child psychiatrist.

They almost never respond when you call them.

They don’t point at things to tell you what they want or to show you something.

They rarely make eye contact.

They either haven’t started talking or have stopped.

They use language in peculiar or unique ways, such as endlessly repeating nursery rhymes, repeating or mimicking words and bits of sentences, or making unusual sounds.

They behave oddly like shooting out their fingers or turning in circles.

Their development seems to be going backwards.

They have roller-coaster emotions and temper tantrums that threaten to get out of control.

They seem to be in a world of their own most of the time.

They’re unusually attached to objects.

They exhibit obsessive-compulsive behaviour such as opening and closing doors, switching lights on and off or arranging objects in specific ways.

They rarely if ever play spontaneous games of imagination.

They play on their own and have no interest in their peer group.

They hate change and insist on specific routines and rituals.

They harm themselves by, for example, hitting their head against a wall or biting themselves.

They don’t seem to be afraid of danger or pain.

They don’t like being cuddled.

Their faces are expressionless and their tone of voice is monotonous.

They’re either extremely sensitive or not sensitive at all to sound, touch or sensory stimuli such as loud noises, rough materials or bright lights.

They are extremely fussy eaters.

SOURCE: THE AUTISM SOURCEBOOK, BY KAREN SIFF EXKORN , PUBLISHED BY HARPERCOLL INS, 2006.

Get help here

Autism South Africa: 011-484-9909 ; www.autismsouthafrica.org

Snap: 021-975-7224 ; info@snap.org.za; www.snap.org.za

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