As more children are diagnosed on the autism spectrum researchers are making giant leaps into its causes, explains Dr Melanie Woodfield
Rain Man is the first thing that comes to mind when many people think of autism. A slightly socially awkward Dustin Hoffman, who struggled not to take things literally (remember the "walk"/"don't walk" traffic light scene?) and had a particular aptitude for maths. As we'll discover, some of this is typical of children with autism and the rest is a large dose of Hollywood.
Autism and Asperger's disorder
Professor Simon Baron-Cohen is seen as Britain's leading expert on autism and related disorders. He's also the cousin of Sacha Baron-Cohen, of Borat fame, but we won't hold that against him. His centre's website, www.autismresearchcentre.com, says, "Autism is thought to be a spectrum of neuro-developmental conditions, characterised by difficulties in the development of social relationships and communication skills and the presence of unusually strong narrow interests and repetitive behaviour.
"Classic autism also typically involves associated learning difficulties (below average IQ) and language delay. Asperger's disorder, a subgroup conceptualised as part of the autistic spectrum, shares the features of autism but without the associated learning difficulties (they have normal or even above average IQ) and without any language delay."
A 2006 international study shows the prevalence of all autism spectrum disorders (ASD) is 116.1 per 10,000 children and for autism alone it's 38.9 per 10,000 children. However, prevalence rates vary widely. In New Zealand no comparable figures are available but it's estimated about 40,000 New Zealanders have ASD, though how it affects their lives varies greatly.
One of the unique features of autism is that it varies on a continuum from very mild to very severe. So it's absolutely possible to be "a little bit autistic" or have "a few autistic traits". A mildly autistic child is likely to live largely the same life as his peers, but may struggle to make sense of complex social situations. They tend to take things literally or have particular routines or interests that they stick to like glue. A profoundly autistic child may not speak, may show stereotypic behaviour such as hand flapping or rocking and is likely to need involvement from special education services.
One of the most common misunderstandings about autism is that autistic children are always gifted at a particular skill. Think of the children in movies who are exceptionally gifted at playing the piano, but struggle to write their own name, or can calculate the square root of 59,673 in the blink of an eye, but mightn't have a clue how to respond to: "How are you?" It is true that exceptional skills (or savant skills) are found more commonly in autistic spectrum disorders than in other disorders and the majority of savants have an ASD. But, the great majority of children with ASD are not savants.
How do I know if my child has autism?
In the past few years, it seems as if more children are being diagnosed as being on the autistic spectrum. There are different theories to explain this but most likely it is a situation where our ability to identify and accurately diagnose autism has improved. Parents often agonise about whether it's worth having their child assessed for autism. A diagnosis can feel like a label which potentially invites a whole set of stigma and stereotypes.
There isn't an easy answer and there are clear benefits and pitfalls to a diagnosis. In a 2009 interview in Britain, Professor Simon Baron-Cohen summed up the situation nicely: "I think [the term autism] should be reserved for people who are suffering, because that's when you get the diagnosis. When the features of autism are interfering with your life to such an extent that you're suffering, and you're seeking help and you take yourself off to a clinic and get a diagnosis, that's the only time when the term should be used."
It's reassuring to know that more reliable and valid tests are being developed to screen children for autism. In a study published last April, researchers came up with a new assessment tool which was given to 10,500 one year olds who visited their paediatrician in the United States. Assistant Professor Karen Pierce and her team found that it showed real promise in being able to quickly identify those babies who were starting to display autistic-type behaviour. These children could then be referred for a more thorough assessment and could start suitable therapy earlier than usual. The checklist is available here and concerned parents could ask their health professional to consider using it.
Professor Baron-Cohen's research team is responsible for some truly ground-breaking studies. Aware that autism was diagnosed in boys far more often than in girls - between four and nine times more often - they looked at the relationship between high testosterone levels in pre-natal amniotic fluid and later autistic traits in 235 six-to-10-year-old children. Fascinatingly, their 2009 study found a strong relationship between the two: the higher the testosterone level in utero, the more likely that the child would display autistic traits in middle childhood.
This finding provoked a storm! Suddenly people started to wonder whether this would become a way of testing for autism before a baby was born. The team was quick to put the finding into context. A test such as this is a long while off and would need to be carefully clinically proven to be very specific in just picking up autism and not other traits. Another huge question is whether (or why) society would want to potentially exclude people with autism. Many autistic people lead hugely productive lives and contribute significantly to society. Some of our best mathematicians, physicists, rocket scientists and surgeons display autistic traits, not forgetting the rumour doing the rounds that Einstein was autistic.
What causes autism?
If we had a simple answer to this question, we'd save thousands of researchers a whole lot of time. What we do know is that autistic traits tend to run in families and they're much more common in boys.
In the 1940s, two researchers came up with the idea that autism was caused by "refrigerator mothers". Catchy title, but a hugely controversial explanation! Leo Kanner and Bruno Bettelheim theorised that the mothers of autistic (and schizophrenic) children were cold (hence, refrigerator) and emotionally unresponsive to their babies. In response to this, the babies grew into children with autistic traits. Controversially, in a 1960 interview with Time magazine, Dr Kanner described mothers of autistic children as "just happening to defrost enough to produce a child".
Thankfully, we can now laugh at this and we know that it's not possible for mothers (or fathers) to cause autism in their children, no matter how hard they try.
Autism is a complex neuro-developmental disorder that children are "born with". It involves several genes and is most definitely not caused by bad parenting, despite several dubious theories doing the rounds. Theories are like belly buttons - everyone has one. A mum at a coffee group told me recently that too much TV causes autism… for the record, it doesn't.
The MMR vaccine
Speaking of controversial, let's take a look at the Measles, Mumps, Rubella (MMR) vaccine which is given to most 15-month-old babies in New Zealand. Vaccines in general tend to provoke heated debate and this one more than others. Enter, Dr Andrew Wakefield. Dr Wakefield is the lead author (of 12 authors) of a research paper that was published in 1998 in a prestigious medical journal. This article, in a nutshell, linked the MMR vaccine with children developing autistic traits. In his book, Callous Disregard: Autism and Vaccines - the Truth behind a Tragedy," Dr Wakefield asserted he wasn't looking for a link between the two. He is a gastrointestinal researcher and medical doctor, who had noticed that many of his patients had bowel problems after the MMR vaccine and also had autistic traits. The study was based on the detailed histories of 12 patients and Dr Wakefield asserts that this was deliberate - a chance to publish early findings as a "case series", not to conduct a full-blown research study. This study did the rounds for several years. Many families heard about the study and decided not to immunise.
In early 2010 everything turned to custard for Dr Wakefield. The Lancet retracted the article and his name was erased from the medical register in the UK. These are both very significant processes which almost never happen. The retraction followed a long investigation by Brian Deer, a journalist who alleged conflicts of interest for Dr Wakefield, including having been paid to help a lawyer build a case against the MMR vaccine. Mr Deer also alleged Dr Wakefield had plans to patent and sell a new, "safer" vaccine, after poking holes in the safety of the MMR combined vaccine. Dr Wakefield's early results relied on parental reports about the onset of autism following the vaccine and have never been fully replicated. Dr Wakefield denies the claims.
This is a very, very complex situation and it's almost impossible to find an impartial summary. In preparing for this article, I've tried to literally read both sides of the story. I've recently read Dr Wakefield's book, and have somewhat softened my attitude towards the man and his research. The book is a challenging read. Even after reading it, I'm not sure that there is a clear "right" and "wrong" in this debate. Frustratingly, this is another situation where we need to educate ourselves on both sides of the argument and make a sensible decision based on sensible information. Not immunising children can have serious consequences (and others argue that immunising children can have serious consequences!) so it's worth being informed.
Can autism be "cured"?
This depends on the severity of the autism, and how you define a "cure". A child with very high-functioning autism, who receives comprehensive behavioural therapy at a young age, is likely to have a really good outcome and make his way through life rather well. The outcome for a child with profound autism is also likely to be better if he receives intensive therapy as early as possible.
Therapy tends to focus on explicit teaching of skills that the autistic child may lack, for example, training a young child to look an adult in the eye, or training an older child to say: "Hi, my name is Stan" when meeting someone new. The training usually involves lots of repetition and lots of rewarding the child for appropriate behaviour, with small treats and/or praise.
Autism is one of the most complex disorders that is both fascinating and heart-breaking. It's encouraging to know top-notch researchers are working every day to learn more about this disorder, and important to acknowledge the countless parents and families who devote their lives to meeting the needs of their autistic children.
Dr Melanie Woodfield is a child and adolescent clinical psychologist in Auckland and mother of two pre-schoolers. She wouldn't mind a savant skill or two - she needed to "google" the square root of 59,673.
There have been several recent books written either for, or by, people with autism. A popular book is "The Curious Incident of the Dog in the Night-time" by Mark Haddon. This is a fiction novel that is written from the perspective of a 15-year-old character who seems to have autistic traits.
Another interesting book, "Congratulations! It's Asperger Syndrome", is written by Jen Birch, a New Zealand woman who discovered she met criteria for Asperger's Disorder while sitting in a psychology lecture at University, aged 43! Jen's website makes for interesting reading too: www.aspergers.co.nz
www.tonyattwood.com.au Is Dr Tony Attwood's site, and contains links to research articles, upcoming workshops (including New Zealand), and general information for both parents and professionals.
www.autismresearchcentre.com is Professor Baron-Cohen's site. A bit more 'academic', and very British, but points in the direction of very sound research, including how Lego can be used to train social skills in autistic children!
www.altogetherautism.org.nz provides lots of local information, a searchable database of services in your region, and a free call number (0800 ASD INFO) to answer your questions.