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 in every 100 people – about 230,000 Australians – has some form of autism, and schools geared especially for autistic children are full to bursting.

“No one knows why autism has increased,” says Prof Lorna Jacklin, a paediatrician and autism expert.

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 can’t 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 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. “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 that 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 that 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 cases autistic children are completely unable to talk. In others they 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.

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. They can also be hypersensitive to certain sounds, smells, tastes and textures.

What can you do?

There’s 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% 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.

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. 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.

What about medication and diet?

“No one likes medicating a child but sometimes it’s essential,” says Jana Forrester, a psychologist.

The medication doesn’t treat the condition itself but rather some of the behavioural symptoms. Risperidone (e.g. Risperdal), an anti-psychotic, and antidepressants are commonly prescribed for autistic children. Risperidone 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.

Once again, research is scant, but there’s also reason to believe that autistic children benefit from supplements such as zinc, magnesium, calcium, vitamin B6, vitamin C and the omega oils. Some people believe probiotics should also form part of a treatment programme.

What causes autism?

According to Professor Jacklin, there’s 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.

“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, a paediatric neurologist.

However, it seems that the most important causes of autism lie within – rather than outside – the body. It’s 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’s talk about the immune system playing a critical role in the development of some kinds of autism. In the end, it’s likely scientists will identify not a single cause, but a whole range of factors. Ultimately, we can only hope these will swiftly lead to new solutions.

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 in 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’s sometimes accompanied by epileptic fits.

4. Asperger’s syndrome

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’re extremely fussy eaters.

Source: The Autism Sourcebook, by Karen Siff Exkorn, Published by HarperCollins, 2006.

Image via Thinkstock