Autism is a condition that exerts a grip on the public imagination like no other. In the social world in which we live, the capacity to read situations and respond appropriately is crucial to successful human interaction. People with autism struggle to acquire this skill.
An estimated 600,000 people in Britain have autistic spectrum disorders, ranging from mild to severe, and there has been no proven treatment for the condition – until now. This week, researchers reported the first successful long term intervention for autism in a ground breaking study that has brought hope to millions of families.
Scientists trained parents to meet the needs of their children with the condition by filming their interactions and then replaying them while providing advice on how to respond to each cue. The parental training lasted six months and led to a 17 per cent reduction in the proportion with severe symptoms, which persisted for six years.
The findings, by researchers from the universities of Manchester, Newcastle and King’s College, London, published in The Lancet, were applauded by colleagues who described them as “exciting”, “remarkably positive,” and “hugely cheering.”
The challenges are, however, formidable. Globally, approximately 52 million people are affected by autistic spectrum disorders, a figure which has risen sharply over recent decades. In the US alone its prevalence is estimated to have grown from one in 2000 children in 1988 to one in 68 in 2012.
Greater awareness, better identification of cases and the inclusion of milder conditions are thought to be behind the rise. Most experts dismiss suggestions that changes in lifestyle or the environment are to blame and claims that autism is linked with vaccination against measles, mumps and rubella (MMR) have been discredited.
Whatever the reason, as the lifetime costs of caring for an individual with autism range from £920,000 (US$1.15 million) to £1.5 million (US$1.87 million) in the UK, the growing financial burden is a cause for alarm. The total economic impact of ASD in the US was estimated at US$268 billion in 2015 and is projected to rise to US$461 billion in 2025.
The world is gradually waking up to the challenge – but much more needs to be done. In April 2013, the World Health Organization passed a resolution urging a new focus on autistic spectrum disorders and the European Parliament adopted a written declaration on autism in September 2015.
The first priority in meeting the needs of families affected is to increase the rate of early diagnosis. The younger the age at which the condition is recognized and help provided, the better the long-term outcome. This is spelt out by a group of international experts in a report, Autism: a global framework for action, to be presented at the World Innovation Summit for Health (WISH) in Doha this month (Nov. 28-29), which I chair.
There is no simple test for autism. It can only be detected from behavioral symptoms, and these are often missed. A recent study suggests that over a third (38 per cent) of children with the condition were not identified until after the age of four despite the fact that almost nine out of ten (87 per cent) had noted developmental concerns before the age of three.
The second priority is to intervene early, before the age of three, which evidence shows has the greatest positive impact. But this is costly and there is a lack of trained professionals. It is better therefore to train the parents, as this latest research shows. The World Health Organization has developed a parent skills training program which is now being piloted around the world.
The third priority is to provide support to families, who often feel stigmatized, blame themselves and do not know where to turn for help. In France the Third National Autism Plan, enacted in 2013, is backed by an annual budget of 205 million euros and provides training sessions for parents aimed at improving their knowledge, enhancing their skills and decreasing stress.
Fourthly, children with autistic spectrum disorders must be included in mainstream education, supported by specialist teachers, to ensure they reach their full potential. Too few are still granted this opportunity. Worldwide, evidence shows that a third of the 60 million children excluded from state-run schools have disabilities.
Finally, there is a critical gap in research to determine the real prevalence of the condition, the costs it imposes and the effectiveness of interventions delivered. Understanding these is vital to winning support for the investment needed. The scientists who announced this week’s breakthrough called for the parental training they pioneered to be rolled out nationwide. We have the evidence — now we need to ensure it happens.