AT THE tender age of 8 months, Samâs behaviour was already unusual. He smiled, but not in response to other people. Nor did he look at peopleâs faces or babble like other children. âHe was a very quiet baby,â says Samâs mother, Kathy Powell of Tallahassee, Florida. âWe dismissed it at first â we thought âheâs a boy, it will probably just happen a little slowerâ.â Six months on, things hadnât improved and Samâs 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 5Âœ years old (see picture) and âmore in our world than in his ownâ, according to his mother. But Samâs experience is rare. Until recently a definitive diagnosis at 14 months would have been controversial. âParents are often aware of initial signs of autism when their kids are very young and yet the average age of diagnosis remains at 3Âœ or 4 or older,â says autism researcher Lonnie Zwaigenbaum of the University of Alberta in Edmonton, Canada. Worried parents are often told to âwait and seeâ, and even if doctors refer them for diagnosis, specialised assessments might not happen for another year.
In the US, at least, thatâs 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 âwell babyâ checks. They also added a link to an online of some of the early signs of autism to paediatriciansâ autism âtoolkitâ, highlighting 13 âred flagsâ to look out for (see Chart). âEarly detection leads to earlier intervention. If we intervene by age 3, children do far better than if you wait until age 5,â says Amy Wetherby at Florida State University, also in Tallahassee, who developed the red flags.
Advertisement
Behavioural interventions often build on the childâs 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 donât 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 donât develop autism at all. Using behavioural therapies, researchers hope to âoverrideâ the underlying genetic causes of autism and push the brain in a different direction. âThe hope is that thereâs enough plasticity in the social system that intervention can help get children back on track in terms of their social and communication development,â says Zwaigenbaum.
âResearchers hope to âoverrideâ the underlying genetic causes of autism and push the brain in a different directionâ
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 childrenâs development in this way (see âShould we try to âcureâ autism?â), but several recent studies suggest that early intervention can do some good.
Wetherbyâs 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 2Âœ (Topics in Early Childhood Special Education, vol 26, p 67).
Meanwhile, in an unpublished study of 10 children under 2Âœ 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. âAll were non-verbal at the start, but they actually began to develop speech,â 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.
âAt the least severe end of the spectrum, there may be kids who we could treat whose autism would, as it were, dissipate,â says Jonathan Green at the University of Manchester, UK, who is also conducting early-intervention trials. âThis doesnât mean a kid wonât have problems, but theyâre not autism â theyâre language problems, attention problems.â
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. âThey tend to get fixed on things, and you get this staring quality,â he says. He believes that the parentsâ 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. âItâs not suggesting that the parents are causing the problem,â stresses Green, who also . âItâs saying that thereâs an interactional consequence of the childâs behaviour.â
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 â 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. âBefore, he couldnât care less when anybody walked into the room â it was like he was in a bubble,â she says. âNow he gets excited when friends come over.â
Mental Health â Discover the latest research in our continuously updated special report.
Should we try to âcureâ 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 infantâs 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 childâs 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. âWe may not be able to cure autism, or change their personalities,â says Amy Wetherby of Florida State University in Tallahassee, who created the â13 flags of autismâ, an early diagnostic tool. âWeâre just trying to help them learn maximally in the social environment, and reduce anxiety.â
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. âWeâre helping him so that he will be able to read faces and be more likeable,â says Kathy Powell, whose son Sam has been undergoing behavioural interventions for the past four years (see main story). âYou just want him to have buddies when heâs growing up â to have girlfriends.â
But Ari Neâeman of the Autistic Self Advocacy Network says that pursuing normality for normalityâs sake is ethically problematic. âWe 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 thatâs natural to them.â 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. âI 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.â
