Asperger’s Syndrome expresses itself across a huge range of capacities, from semi-functional to eccentric genius. Science has not yet delivered a cause or a cure for the condition that makes ordinary life so difficult for so many, but when it does, it may also find a way for the rest of us to access our dormant creative power.
By Catherine Eden
In Born on a Blue Day (Hodder) Daniel Tammet gives readers a first-hand account of the workings of his extraordinary mind. He has astonishing mathematical ability (he can recite the value of Pi from memory, to 22,514 decimal places) and also, after just one week of study, demonstrated his fluency in Icelandic in a British television documentary in 2005.
Daniel developed his savant abilities in childhood after a series of epileptic seizures, which raises important questions about hidden potential within us all, suggests savant syndrome specialist, Dr Darold Treffert, in the foreword to the book. Daniel has high functioning autism or Asperger’s Syndrome (AS) but his encouraging message is that, although it’s a lifelong condition, AS can stabilize and even improve over time. Adults are able to learn social skills and techniques to help them adapt to the demands of conventional life, and many have married and had children.
The difference between autism and AS
‘The syndrome belongs to the same broad group of disorders as autism but differs from it in that there are no significant delays or deviance in language acquisition, although more subtle areas of social communication may be affected,’ says clinical psychologist Susan Baker, who consults at Life Hunterscraig Hospital in Port Elizabeth. ‘Typically, toddlers with autism don’t express normal curiosity about the environment and may not acquire age-appropriate learning skills. But in AS language and cognitive skills are mostly within normal limits, so parents may only develop concern when the child’s social difficulties become apparent, which often occurs when he begins pre-school and is exposed to same-age peers.’
Diagnosis depends on a combination of attributes, among them discomfort in social situations and avoidance of eye contact. People with the condition (it affects four times as many boys as girls) struggle to maintain a conversation and have difficulty interpreting body language and the subtleties of speech, and yet their own speech tends to be formal and advanced. Hours of obsessive study make them exceptionally knowledgeable about certain subjects, which they talk about at great length. They crave order and routine, have repetitive patterns of behaviour and are distressed by change.
Some children bang their heads, flap their hands or hum – self-soothing actions known as ‘stimming’. Bright lights, noise, new foods or unexpected situations can trigger an outburst of anxiety and aggression. Children with AS find it difficult to make friends or appreciate others’ needs, and often come across as lacking emotion. Although they can learn social skills they will always find communication challenging. To make matters worse, they are often immature for their age and may be teased or bullied. Rejection reinforces their tendency to be solitary.
‘Older children may have an interest in friendship but lack the understanding of the conventions of social interaction,’ explains Baker. Feeling different, they withdraw and become anxious, depressed and socially isolated. The computer offers a world of escape, a helpful barrier between them and others, and access to the information that fuels their passionate interests.
On the positive side, because of their ability to focus intently on a topic and think ‘out the box’, they often have successful careers in research, technology and engineering.
What’s wrong with our child?
Cape Town property agent Marianne Price remembers the day someone in the supermarket told her that her beautiful, badly-behaved child was a monster who should be in a cage. ‘He’d go ballistic in the brightly-lit shop and try to get away,’ she says. ‘We didn’t have a label for Matthew’s condition but he’s my third son, so I was experienced enough to know immediately that something was wrong. He didn’t want to be held, wouldn’t latch on to the breast or bottle (he still has trouble with oral actions, such as brushing his teeth) and disliked new sensations.’
When he was two, Matthew developed epilepsy. ‘The prevalence of epilepsy among those on the autistic spectrum is much higher than in the normal population,’ writes Daniel Tammet. ‘About a third of children with an autistic spectrum disorder develop temporal lobe epilepsy by adolescence. For this reason it is thought that the two conditions may have a common source in the brain’s structure or in the genetics that underlie it.’
Two distinct autism spectrum disorders were documented almost simultaneously in 1943 by an American child psychiatrist named Leo Kanner and an Austrian pediatrician, Hans Asperger. ‘Classic’ autism is often referred to as Kanner Autism, explains Lauren Schrempel, who runs an Asperger’s support group in Pretoria. The other one, which came to be known as Asperger’s Syndrome, was only recognised as a unique disorder in 1994 – the year Matthew was two – so no-one made the connection.
‘His language and motor skill development was on track,’ says Marianne, ‘but he was aggressive and agitated. He was diagnosed with Attention Deficit Hyperactive Disorder (ADHD) and treated with anti-convulsion medication to control his seizures. Having to be part of an active family perhaps saved him from retreating into a hole he could have stayed in for the rest of his life. He battled to adapt to mainstream schooling and was finally diagnosed with AS when he was seven. I will never forget the comfort of his new doctor’s words: “Matthew was born, not raised”. You always wonder if you are somehow to blame for your child’s problems.’
Matthew switched to the Vera School for Learners with Autism, and went on to Vista Nova and St George’s Grammar School. ‘His maths was brilliant, his language skills good, but he couldn’t manage the social side,’ says Marianne. ‘We took him out of school when he was 14.’
Now a polite, shy 17-year-old who is obsessed with cricket, Matthew is an expert on the game’s statistics and plays enthusiastically for the Western Province U19 B side. ‘He copes with the pressure because it’s logical and by the book,’ his mother explains. Four different kinds of medication control his obsessive-compulsive tendencies, anxiety and epilepsy. And since wheat, dairy and sugar have been eliminated from his diet, his general health has improved. He’s calm, seizure-free and able to identify and verbalise his feelings.
‘My dream is to find a suitable job for him when he’s 18 and to equip him with the life skills to live independently,’ says Marianne. ‘But I worry about his future; I never want to die.’
Causes and treatment
International estimates for the whole range of autism spectrum disorders are that there are 40 – 50 births per 10 000, but these figures are not exact and none are available for South Africa specifically. In some parts of the world the condition is commonplace, especially in the high-tech area of California known as Silicon Valley.
Writer Steve Silverman reports in Wired that most parents of the valley’s autistic children are engineers and programmers who themselves display autistic behaviour, but only realised they were on the spectrum after their children were diagnosed. So common in the condition among ‘techo-geek’ families that Microsoft has apparently offered its employees insurance to cover the cost of behavioural training for their autistic children.
‘One consequence of increased reproduction among people carrying some of these genes might be to boost “genetic loading” in successive generations, leaving them more vulnerable to threats posed by toxins in vaccines, candida, or any number of agents lurking in the industrialised world,’ writes Silberman.
Claims that the measles-mumps-rubella (MMR) vaccine causes Asperger’s and autism continue to circulate, but without conclusive proof of the link, immunisation is still recommended. Marianne Price fears that the cortisone she was given for flu in the last week of her pregnancy might have done some damage. Matthew was born at 38 weeks, and she’s convinced that the first vaccine he received made his already vulnerable condition worse.
His older brothers are not affected, but ‘If parents have had one autistic child, the risk of their second child being autistic rises from one in 500 to one in 20,’ writes Silberman. ‘After two children with the disorder, the sobering odds are one in three. There is also a higher than normal chance that the siblings of an autistic child will display one or more of the other developmental disorders with a known genetic basis, such as dyslexia or Tourette’s syndrome.’
To date, the genes responsible for AS have not been identified, and there is no prevention or cure for it, other than treating associated depression or ADHD. Given the host of great writers, painters and inventors who were known to have seizures (Van Gogh, Lewis Carroll, Dostoevsky) that would probably now be linked to AS, some researchers question the wisdom of imposing a ‘cure’ that might deprive society of brilliant, visionary minds.
Avril Meaker, who administers the Cape Town Asperger’s support group for parents and adults with the condition, has a highly gifted 20-year-old son with AS. His four siblings and their father are all on the spectrum. ‘Now we realise it’s on both sides of our family,’ she says, ‘but when I look at these people I see a kaleidoscope of wonderful talents and attributes. Life would be so dull without them.’
- ASCON meets in Cape Town on the last Wednesday of each month to provide support for parents and adults with the disorder: firstname.lastname@example.org
- Support group in Lydenburg, Mpumalanga: email@example.com 013 235 2233
- Support group in Pretoria: firstname.lastname@example.org
- Early intervention centre: contact Juliette Newberry: www.littlestars.co.za
- Ashley Wagner, principal of Little Leaps Nursery School: 012 653 8499/082 468 217
- Websites: www.autismsouthafrica.org; www.autismassociation.org; www.autismaction.co.za
- Article by Steve Silberman: http://www.wired.com/wired/archive/9.12/aspergers_pr.html
Published in Life Healthcare Magazine, Summer 2009/2010