AT THE tender age of 8 months, Samās behaviour was already unusual. He smiled, but not in response to other people. Nor did he look at peopleās faces or babble like other children. āHe was a very quiet baby,ā says Samās mother, Kathy Powell of Tallahassee, Florida. āWe dismissed it at first ā we thought āheās a boy, it will probably just happen a little slowerā.ā Six months on, things hadnāt improved and Samās paediatrician persuaded the family to screen him for communication problems, leading to a test for autism.
The test was positive and Sam began behavioural therapy. He is now 5Ā½ years old (see picture) and āmore in our world than in his ownā, according to his mother. But Samās experience is rare. Until recently a definitive diagnosis at 14 months would have been controversial. āParents are often aware of initial signs of autism when their kids are very young and yet the average age of diagnosis remains at 3Ā½ or 4 or older,ā says autism researcher Lonnie Zwaigenbaum of the University of Alberta in Edmonton, Canada. Worried parents are often told to āwait and seeā, and even if doctors refer them for diagnosis, specialised assessments might not happen for another year.
In the US, at least, thatās starting to change. In October last year the American Academy of Pediatrics began recommending that all infants be screened for signs of autism at 18 months and 24 months during routine āwell babyā checks. They also added a link to an online of some of the early signs of autism to paediatriciansā autism ātoolkitā, highlighting 13 āred flagsā to look out for (see Chart). āEarly detection leads to earlier intervention. If we intervene by age 3, children do far better than if you wait until age 5,ā says Amy Wetherby at Florida State University, also in Tallahassee, who developed the red flags.
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Behavioural interventions often build on the childās own interests, in order to help them practise establishing a social and emotional connection with others. For example, if a child enjoys a game in which he or she is bounced up and down, the parent will wait, and only bounce them after they have made eye contact and smiled, or asked to be bounced with a gesture or a sound. Children with autism also often donāt like loud sounds or being touched, so they are exposed to these things in small doses, and taught to simply ask for a break when they start to feel uncomfortable.
Wetherby and others think it may be possible to diagnose children even earlier on, perhaps before classic symptoms develop. In a study of 5385 children, she has shown that communication screening can be used as early as 9 months old to catch children who will develop autism. The work will be published in the journal Autism.
Meanwhile previous research has shown that children with autism are born with an average or slightly below average head circumference but then experience faster than average head growth in the first three years. Last week, Zwaigenbaum in London suggesting that rapid head growth might be detectable in children at high risk of autism who are as young as 6 to 12 months old.
Being able to identify children at high risk of autism and offer therapy at this age would have big implications. Before 12 months, the human brain is still so flexible that it might be possible to influence it to the extent that some children donāt develop autism at all. Using behavioural therapies, researchers hope to āoverrideā the underlying genetic causes of autism and push the brain in a different direction. āThe hope is that thereās enough plasticity in the social system that intervention can help get children back on track in terms of their social and communication development,ā says Zwaigenbaum.
āResearchers hope to āoverrideā the underlying genetic causes of autism and push the brain in a different directionā
It is a relatively new way of looking at autism: until recently, the syndrome was seen as largely intractable, present either from birth or occurring spontaneously at the age of 2 or 3. Some question the ethics of interfering with childrenās development in this way (see āShould we try to ācureā autism?ā), but several recent studies suggest that early intervention can do some good.
Wetherbyās team carried out a pilot study of 17 children diagnosed with autism and treated with behavioural therapy at an average age of 18 months. She found significant improvements in core behaviours such as making eye contact and sharing a smile compared with children who began therapy at the age of 2Ā½ (Topics in Early Childhood Special Education, vol 26, p 67).
Meanwhile, in an unpublished study of 10 children under 2Ā½ years, Sally Rogers and colleagues at the University of California, Davis, got parents to carry out behavioural therapies with their children over a period of 10 weeks, with positive results. āAll were non-verbal at the start, but they actually began to develop speech,ā says Rogers. The children also became better at imitation, a capability that people with autism often lack, and doubled levels of interaction with their parents.
āAt the least severe end of the spectrum, there may be kids who we could treat whose autism would, as it were, dissipate,ā says Jonathan Green at the University of Manchester, UK, who is also conducting early-intervention trials. āThis doesnāt mean a kid wonāt have problems, but theyāre not autism ā theyāre language problems, attention problems.ā
Green hopes to begin a study working with 9-month-old children in the near future. He is also trying to understand how autistic brains develop.
For example, he has noticed that younger siblings of children with autism, who are at high risk of developing the condition, sometimes have abnormalities in eye gaze and attention as young as 6 months old. āThey tend to get fixed on things, and you get this staring quality,ā he says. He believes that the parentsā reaction to these abnormal behaviours could play a role in shaping the brain. For example, the natural response to someone staring at you is to look away, but if an infant stares at its mother and she repeatedly looks away, the baby may not get the social stimulation it needs for its brain to develop normally, and may take another step along the path to developing autism. āItās not suggesting that the parents are causing the problem,ā stresses Green, who also . āItās saying that thereās an interactional consequence of the childās behaviour.ā
Symptoms will probably persist in children at the more severe end of the spectrum, albeit in a milder form, and it is unclear whether the effects of early intervention therapy will extend into adulthood ā Sam still has a tendency to engage in repetitive behaviour, or perseverate, for example.
But his mother hopes he will be able to start at an ordinary kindergarten later this year. āBefore, he couldnāt care less when anybody walked into the room ā it was like he was in a bubble,ā she says. āNow he gets excited when friends come over.ā
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Should we try to ācureā autism?
Both Einstein and Newton are thought to have had traits that would have identified them as autistic. Would they have achieved as much if they had had therapy at an early age to improve their social and communication skills?
New tools for diagnosing autism raise the prospect of being able to intervene early on, possibly altering the development of an infantās brain. The goal is to allow infants whose natural response might be to turn away from social interaction to learn more broadly from the world around them. But there is a fine line between improving communication skills and altering a childās temperament to the extent that they become a different person.
Many researchers say they are just trying to help people with autism improve their lives. āWe may not be able to cure autism, or change their personalities,ā says Amy Wetherby of Florida State University in Tallahassee, who created the ā13 flags of autismā, an early diagnostic tool. āWeāre just trying to help them learn maximally in the social environment, and reduce anxiety.ā
For example, interventions often aim to turn the quirks of autism into activities that children can share with their parents, enabling them to get social stimulation. āWeāre helping him so that he will be able to read faces and be more likeable,ā says Kathy Powell, whose son Sam has been undergoing behavioural interventions for the past four years (see main story). āYou just want him to have buddies when heās growing up ā to have girlfriends.ā
But Ari Neāeman of the Autistic Self Advocacy Network says that pursuing normality for normalityās sake is ethically problematic. āWe very much support the idea of early education to acquire communication skills and other new skills, but we have serious ethical concerns with trying to use early education to force a child not to behave in a fashion thatās natural to them.ā He cites repetitive behaviours, such as hand flapping, which autistic children often engage in but which are not necessarily harmful. Trying to stop this is an example of society stamping out behaviours it judges to be undesirable, he says.
Autism rights campaigner Dinah Murray, who is based in London, agrees. āI think it would be a great pity if it turned out that we lost a whole range of dispositions which belong around the autistic spectrum because of this.ā
