By Karola Dillenburger, Queen’s University Belfast
Many children with autism are put on waiting lists and miss out on early behavioural interventions and other benefits because health professionals are reluctant to diagnose autism early out of fear of labelling young children.
Until recently “autism is a lifelong developmental disability” was repeated in nearly all descriptions and definitions of autism, even to the extent that some interventions, such as the TEACCH approach – which focused on structuring the physical environment to suit “the autism”, rather than on developing socially relevant and important skills for life in everyday inclusive society – were based on the concept of autism as a lifelong condition.
So, in order to prevent labelling children between one and three as “autistic” for the rest of their lives, diagnosis is being deliberately delayed, even if all the signs are there. Instead of receiving an early diagnosis, about half of the young children referred for diagnosis are put on a “watch-and-wait” list, in other words, their diagnosis is deferred. The rationale for this is to ensure that, when these children get the diagnosis, it is “stable” and does not change over time.
Under these contentions, diagnosis can be delayed for up to five years and sometimes, until the child has reached school age and beyond.
Getting started earlier
But there is increasing evidence that autism may not necessarily be lifelong.
More studies are now showing a notable number of children, who were previously diagnosed with autism, no longer meet the diagnostic criteria later on. This has led to headlines such as: “Children may grow out of autism.”
But the children in these studies did not miraculously “grow out of autism”. They received at least one to two years of early intensive applied behaviour analytic interventions, starting when they were only about two years old. Applied Behaviour Analysis, or ABA, is the application of the science of behaviour analysis that is widely used in the US and Canada to help a range of different people, including those on the autism spectrum, to lead fulfilled lives.
For young children with autism this means that the skills needed to enhance their quality of life are taught playfully and systematically by highly trained staff who work under strict ethical guidelines. Early diagnosis is important because it allows this to happen much earlier. For young children with autism this means that the skills needed to reach their full potential are taught early when brain plasticity is much more pronounced and consequently the impact of intervention is much more comprehensive.
ABA-based interventions are entirely in line with the UN Convention of the Rights of Persons with Disabilities because programmes are dynamic and individually tailored to suit the needs of the child as the child grows and develops. Of course, this scientific approach to interventions also benefits many other populations including adults with autism and children in mainstream classrooms.
There is much ill-informed nonsense that is written and said about ABA. And it is sometimes difficult to decipher the motivations for this. For some there are clear financial reasons, while others may have suffered from quackery pretending to be ABA.
Worryingly, some well-known academics have joined the anti-ABA circus of criticisers, who are often embarrassingly wide of the mark: for example, that behaviour-based interventions are dead, despite the growing popularly of ABA and the rapidly rising numbers of certified behaviour analysts. Or they mix up ABA, the application of the science, with a procedure called Discrete Trial Teaching(DTT), which may be used with young children with autism if they require well-structured, repeated learning opportunities early on. But DTT is just one way of applying behaviour analysis, not the science itself.
Apart from accessing early intervention, a diagnosis is also necessary to access other benefits, such as carer’s benefits or disability living allowances. Bringing up a child with disabilities is at least three times as expensive as bringing up other children, and families need all the support they can get. There is ample evidence that parental stress can be alleviated through early diagnosis, support, and effective intervention. Delaying diagnosis prevents access to these.
Early diagnosis: possible and reliable
A recent secondary data analysis of the UK Millennium Cohort Study of just over 18,500 children showed that children who were diagnosed with autism by the time they were five were much more likely to have experienced health and developmental concerns from as early as nine months old, than children not on the spectrum.
By three years old, these children were more likely to have motor, communication, as well as sensory problems – and increasingly poorer emotional and social health.
Findings of the appropriateness and importance of early diagnosis are confirmed in studies that have looked at babies whose older siblings have autism. These babies are considered “at risk of developing autism” and many of them show signs such as repetitive behaviours and lack of social engagement before they are 18 months (but as early as nine months).
A recent pilot intervention study of these babies found that early parent-led behaviour intervention led to significantly reduced autism symptoms.
Unethical to delay diagnosis
The detrimental long-term outcome of late diagnosis and lack of early intensive intervention is clear. The majority of adults with autism, diagnosed when they were about the age of six, have unchanged IQ and functioning by the time they are 44-years-old, while a quarter of these adults cannot be assessed because they do not develop language above that of a three-year-old and engage in severe aggressive or self-injurious behaviours. This stands in stark contrast with the good outcomes of early ABA-based interventions found in the US.
Of course, most children with autism grow into adults with autism and challenges are likely to increase. Much can and should be done to enhance their strengths and improve their choices and quality of life through early diagnosis and early intensive interventions. Delaying diagnosis out of ill-perceived and outdated concepts is unethical and simply no longer an option.
About the Author: Karola Dillenburger receives funding from Office of the First and Deputy First Minister (OFMDFM) and the European Union (Framework 7).