Volume 7 Issue 4 April, 2017
In the last 10-15 years, Autism is increasingly recognised in urban India. The term Autism Spectrum Disorder (ASD) is becoming popular (“…this child is on the spectrum”, is not an uncommon statement amongst professionals) and encompasses conditions such as classic Autism, Asperger’s syndrome and even the milder form termed the PDD-NOS in ICD 10. Many children who may be considered as meeting criteria for PDDNOS under the ICD 10 may be considered under the new category of Social Communication Disorder (SCD) by the DSM 5. The term ASD is best used to reflect the fact that there is wide range of severity in children presenting with features of autism. The core features are best summarised as reduced social responsiveness and restricted routines / repetitive behaviours, besides varying levels of language deviance / delay. Broadly, SCD does not have stereotyped behaviours and rituals, while Asperger’s syndrome does not have language/cognitive delay. Apart from severity too, there is a marked heterogeneity in intelligence and comorbidities such as over activity, aggression, self-injurious behavior, besides epilepsy, tic disorders and sleep disorders.
Published reports of large systematic prevalence studies from across India are not available. The National Consultative Meeting called by the Union Government of India and the WHO, in 2011, estimated that there are 1.7-2 million children with ASD in India and decided on a consensus prevalence of 1 in 250 children (0-18 years) for planning purposes. In countries with more advanced health care systems and better recording of data, the markedly increased ambient levels of awareness perhaps helps identify the milder forms better and this may explain the prevalence figures of 1 in 58 or 1 in 66 children from such countries. It remains to be explored if such milder forms are distributed within the formal schooling systems in our country. If the children are faring reasonably well with academic work, they may not be easily identified in India as needing help with social skills etc.
For assessment of autism, parent training, interventions and monitoring, various tools have been adapted and indigenously developed.
Following tables give an overview of the same.
Measures of clinical relevance
developed in India
- The Indian Scale for Assessment of Autism (ISAA) – determine severity for disability certification purposes
- The INCLEN Diagnostic Tool for ASD
- The ComDEALL Development Check List – helps tracking development on 8 different dimensions of growth in children till school age
Parent assisted training programmes developed around India
- In- patient based intensive education and training programme at NIMHANS
- Badthe – Kadam by AIIMS, a structured parent training programme
- The Parent
- Assisted Communication Therapy (PACT) from UK has been adapted into a 12-week parent training program by Sangath, Goa
- comprehensive manualised early intervention programme for children with ASD developed by comDEALL Trust, Bangalore – This programme runs for over 2-3 years, 3 hours a day, five days a week and aims to mainstream children by 6 years of age
Intensive multi-disciplinary training programmes remain the most accepted way for helping these children. Efforts to help children with ASD through early identification and early intervention have been increasing in urban areas of the country. Paucity of Rehabilitation Council of India certified professionals is a major challenge in organising services. In Karnataka, Spastics Society of Karnataka, Karnataka Parents Association for Mentally Retarded Citizens and the ComDEALL Trust conduct RCI approved courses in early intervention for graduates to address this lacunae.
Multi –Disciplinary Team in Autism Intervention
Child Psychiatrist
Child Neurologists
Pediatricians
Occupational Therapists
Speech – Therapists
Special Educators
The December 2016 inclusion of Autism under the Rights of Persons with Disability is a major step forward in the care of children with ASD in India. This mandates Union and State Governments to provide services , especially the early
developmental interventions for these children. The unfurling focus on District Early Intervention Centers under the Rashtriya Bal Swasthya Karyakram (RBSK) is being watched with hope by families and professionals alike. Even 4-5 years of delay in delivering on this plan will mean that a million children across the country would not receive the promised help and the society will face more challenges in their school ages over the coming years. There is an urgent need to rapidly develop these services using innovative ways to upscale available methods of interventions.
Currently, evidence-informed psychopharmacology remains focused on difficult behaviours and comorbid conditions rather than correcting the primary symptoms. However, treating associated difficulties significantly helps conduct of ongoing therapies. There is a need to effectively address epilepsy and neurological conditions as these improve outcomes overall. Exciting avenues that can modify primary ASD symptoms are being explored.
Autism remains a fascinating condition for all health professionals. Understanding autism, understanding human social cognition and child development may be all referring to the same set of challenges.