By Dr Shabina Ahmed
April 2nd has been designated as World Autism Awareness Day (WAAD) by the UN Resolution 62/139 adopted in November 2007. It has been celebrated every year worldwide since April 2008 as a global effort to foster greater understanding, acceptance and inclusion of Autism Spectrum Disorder (ASD) in communities around the world. WAAD is an annual reminder that autism is a growing global health issue that impacts millions of children and adults.
The prevalence of ASD in Asia tends to be similar to that in Europe and the US. Studies conducted over 30 years, from the 60s, reported prevalence of ASD as 2-5 per 10,000 population, but a 90s study by the USD Department of Developmental Services reported a 550% increase , and the Center for Disease Control (CDC) in the US in 2016, states an incidence of 68 per 10,000 population , similar to a global figure of 62/10,000 . Similar trends are being reported globally, with the highest rates in Japan and developed countries.
There are no nationwide prevalence studies in India. However it is estimated by the Rehabilitation Council of India (RCI) an incidence of 1:500 or 0.2%, corresponding to more than 2.2 million people nationwide, more common than Downs’ Syndrome.
This explains the alarming rise of children, adolescents and adults with social-communication disorder. Research has shown that disorders of language and communication hamper scholastic performance in later life. Surveys show that 75% of these adults ultimately remain unemployed or underemployed. Another study shows only 55% of young adults with ASD had been employed at least once in their first 6 years after highschool. This is the lowest rate when compared with other developmental disability groups. Vocational rehabilitation (VR) services are in place to assist individuals with disabilities but researchers indicate that the VR services provided to individuals with ASD are less than optimal and inadequately prepared to support individuals in the spectrum to face their unique challenges in employment. Hence, it is the need of the hour is to understand the transition process of youth with ASD.
It is time to realise that there is a huge ongoing loss of productive human resource, a focus of debate in recent years. Significant to mention here that autism is now included in India in the revised Persons With Disability (PWD) Act 2016 under the grouping ‘Intellectual Disability’. But by definition, in the Act, ASD is a neuro-development condition of social communication disorder affecting a person’s functionality. Herein lies the great disparity in service delivery. In contrast, the developed world has developed their autism services years ahead of us, unlike in India where we are yet to establish the basic services. In fact, this is reflected in this year’s WAAD theme of the UN, “Empowering Women and Girls with Autism”. Let us first get our basics rights and stabilisation of services before we can get into specificities of the issue.
Is this a disability or a change in cognitive style due to neurodiversity ? Though the condition has been grouped under ‘Intellectual Disability’, intellectual capacity is not the main criteria of this disorder. Though most of the children with ASD have developmental and intellectual delay, and are unable to follow the normal school curriculum, but some show intense interest and detailed attention in music, newspapers, magazines, books, pens and mobiles and handles these interests skillfully. If this aspect of splinter intelligence is nurtured, they can be channelized meaningfully.
Autism is not a disorder of childhood alone but a truly developmental disorder that affects development manifesting differently across the lifespan, with many subcategories and varied presentations, best addressed in a dimensional approach. Initially, we have the paediatrician’s role in early identification and intervention. Later, if we do not cater to their needs appropriately, they have an increased incidence of neuropsychiatric problems. Hence a multidisciplinary support both at individual and family levels is essential.
The uniqueness of this problem is, if detected before 30 months, and those with milder symptoms, with higher cognitive scores at 2 years, supplemented with early intervention had greater chances of outgrowing the symptoms of autism. But longterm studies are required to assess their progress in normal school. However, the challenge of identification before 2 years is difficult as the symptoms of autism remain submerged within the child’s aberrations of the developmental functioning.
Over the years, many types of interventions have evolved with multiple definitions and concepts, but due to the wide variability of presentations and of trained staff, generalised interventions fail to harness a large group of children.
Hence, it is suggested that parents and other stakeholders must think in terms of individually designed plans to adapt social interactions and activities to match a child’s neuropsychological makeup rather than changing the child to fit the program. Such interventions are typically parent-delivered. Parent-mediated interventions involve teaching parents to use therapeutic strategies usually in the context of normal daily routine along with social skills training with emphasis on peer relationship.
Autism differs from other disabilities where compensation is of the deficient organ : blindness by Braille, deafness by hearing aid but in autism the problem area has not been specifically identified as the symptomology appears to be a chain reaction of biological to neuropsychological development. Therefore the best treatment modalities towards this group of children are from the bio-socio-medical approach. Presently, the prevailing deficit targeted approaches do not address the child as a whole and does not prepare the child for transition of youth.
Autism is a global health crisis that knows no borders. The world must further act globally and locally to improve the lives of the individual and affected families. WHO has suggested to enhance services for affected families. It is mandatory to find each nation’s prevalence and to understand the impact of ASD on the families, especially on parenting styles and upbringing. Finally, a support system for these families must be developed by instituting training modules to promote child development in a holistic manner.
(Dr Shabina Ahmed is MD Developmental Paediatrician, Assam Autism Foundation Guwahati)