Dr Sonam Kothari, Expert in Clinical Neurosciences (Pediatric Neurology), and Co-Founder, Butterfly Learning stresses that neurodiverse children often exhibit significant variability in their cognitive, social, and language skills, which directly impacts their responsiveness to therapy. Understanding these individual developmental profiles at the start of therapy is crucial
1 in 8 children in India has at least one neurodevelopmental delay or condition needing therapy. Neurodiverse children often exhibit significant variability in their cognitive, social, and language skills, which directly impacts their responsiveness to therapy. Understanding these individual developmental profiles at the start of therapy is crucial for creating personalised treatment plans that enhance therapeutic outcomes.
A major challenge in treating pediatric neurodevelopmental disorders like Autism Spectrum Disorder is establishing standardised methods to objectively measure progress. While diagnostic criteria such as those outlined in DSM-5 (American Psychiatric Association, 2013) are helpful, they may not fully capture the nuanced variability in communication and sensory processing observed in these children. This variability highlights the need for individualised benchmarks to accurately track progress and tailor therapeutic interventions.
Given the variability in developmental milestones with age, there is an increasing need to establish age-specific benchmarks to monitor progress more precisely and adjust interventions as needed. Research indicates that stratifying children based on age and developmental characteristics improves the accuracy of progress measurement and enables more targeted therapeutic strategies.(1,2) This approach ensures that interventions are tailored to meet the unique needs of each child, thereby maximising the chances of successful outcomes.
Using established standards like VB-MAPP (Verbal Behaviour Milestone Assessment Placement Program) and ABLLS (Assessment of Basic Language and Learning Skills), age and condition specific benchmarks of improvement needs to be created for datasets specific to the country. This data enabled with the initiatives like the National Health Stack will help is establishing benchmarks for improvement in Behavioural, Speech and Occupational therapy, creating a measure of quality and providing an objective feedback loop to neurodiverse families.
Recent advances in data science, can help in providing real time feedback to the therapist as well, if the child is not progressing as per expectations derived from the data set specific to age and condition, enabling fast course correction in therapy if needed and saving valuable time for the family. Some of the new age, technology enabled therapy centers like Butterfly Learnings are actively using technology to collect data from every therapy session that is delivered to a child, showing the progress/regress transparently to the family in the form of a parent application.
Finally, as India makes significant strides towards the UN SDG goals for 2030 with a declining IMR and MMR, and as the Total Fertility Rate falls, the focus will slowly, but surely move towards enhancing quality of life especially for the younger generations to enhance productivity for the country. A consolidated, comprehensive longitudinal database of objective outcomes for neurodiverse children will help underwrite specific insurance programs covering therapy for children.
References ;
1. Dawson G, Jones EJH, Merkle K, Venema K, Lowy R, Faja S, et al. Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism. J Am Acad Child Adolesc Psychiatry. 2012 Nov;51(11):1150–9.
2. (PDF) Adult Outcome for Children with Autism [Internet]. [cited 2024 Sep 24]. Available from: https://www.researchgate.net/publication/7735575_Adult_Outcome_for_Children_with_Autism