June 2, 2017 | By Darby Herkert
If you knew that parents and doctors were postponing treatment that could minimise the difficulties associated with an often life-long challenge, how would you feel?
Unhappily, this is currently the case with autism in India.
Autism is a neurological disorder that affects social interaction and communication skills. It generally manifests itself before the age of three. Symptoms of autism include learning disability and speech delay, inappropriate social interaction, and compulsive behavior, along with many more. The severity of autism ranges from a mild learning and social disability to severe impairment and highly unusual behavior. Autism is classified as a continuum, known as Autism Spectrum Disorder (ASD), in order to account for these differences.
India is home to about ten million people living with ASD. Regrettably, the Government of India only recognised autism as a disorder in 2001. And while progress has been made in the diagnosis and treatment of ASD, there are still significant obstacles to overcome.
Autism is often viewed as a lifelong condition, but recent studies have shown that a number of children who were diagnosed with ASD can achieve a very high quality of life, and sometimes progress to a point that they no longer meet the diagnostic criteria. However, this progress is the result not of children simply ‘growing out’ of autism, but rather of early diagnosis and years of early intensive applied behavior analytic interventions. In applied behavior analysis, children are taught the necessary skills for an improved quality of life. The success of early intervention stands in glaring contrast to the current majority of autistic adults who have an IQ unchanged from when they were diagnosed at about the age of six.
Early diagnosis of autism is extremely important because it allows the intervention to occur when brain plasticity is much greater, which allows the intervention to have its greatest impact. In fact, 75% of brain development takes place by two years of age. Unfortunately, there is great stigma currently associated with the early diagnosis of ASD, due to the fear of a child being labeled as autistic for the rest of his life. Both parents and physicians tend to downplay the early signs of autism, suggesting that the symptoms are ‘just a phase’. This causes about 50% of children seeking a diagnosis to be put on a ‘watch and wait’ list, so that diagnosis and treatment are deferred.
In India, most children with ASD are diagnosed between the ages of three and six. One study found that on average Indian parents tended to wait two years between initially recognising the symptoms of ASD and taking the child to receive a diagnosis. Appallingly, Indian parents reported that they had seen an average of 3.5 doctors before they received a diagnosis.
This delay is extremely unfair to children since it prevents them from receiving the resources, support and training that they need in order to reach their full potential.
So, what can be done? Firstly, we should not fear autism. Being proactive about getting a child diagnosed for early symptoms leads to a much more significant intervention impact. Secondly, we should work towards building social acceptance of persons with autism and raising awareness about the necessity of early diagnosis. If we eliminate the stigma associated with autism, parents will be much more likely to seek an early diagnosis and ensure that their children get the help that they need. Finally, we should ensure that professionals are properly trained on the use of diagnostic tools, so that children can be properly diagnosed as soon as possible. Delay in early detection and diagnosis is unfair to our children, by preventing autistic children from receiving the treatment they need to reach their full potential. By working against the stigma associated with autism, we can promote early diagnosis and allow essential support and training, so that everyone can live their most fulfilling life.
About the author: Darby volunteers at the Amrit Foundation of India and is currently studying Molecular, Cellular, and Developmental Biology at Yale University. Darby is interning in India in order to better understand the health challenges faced by the developing world.