Sad but true! One in five children, in a developing nation like India, emerge into this world with their innate human capital compromised. A range of neurodevelopmental disorders (NDD) are the outcome of such compromise: learning disability, childhood epilepsy, cerebral palsy, mental retardation, attention deficit and hyperactivity disorder, autistic spectrum disorder; conditions that strike early and leave lasting impact on the child. On the occasion of the International Day of People with Disabilities (3rd December) we delve further.
What is neurodevelopmental disability?
A range of conditions that follow abnormal brain development and impact on motor function (strength, dexterity, coordination); or cognitive function (intelligence, learning, aptitude); or emotions & behavior (temperament, mood swings, emotionality, aggression, hyperactive-impulsive behaviours, socialization issues etc.). In all these instances, there are demonstrable changes in the brain and its development, either structural or in it’s functioning.
While some humans have NDD imprinted in their biological code (through genetic, hormonal, and other neurobiological factors), for many others, the causes lie in critical stages of development, with a range of factors causing compromise. Factors that affect maternal health around conception and through pregnancy; trauma through injury, drugs (both prescription and non-prescription), alcohol, smoking; exposure of the pregnant mother to infections or toxins; and maternal malnutrition, commonly compromise this desired state of “optimality”. Factors affecting the child include birth trauma and infection through poorly planned and executed deliveries, neonatal compromise (asphyxia, jaundice, early trauma through accidents or abuse, infections, malnutrition); untreated epilepsy; other progressive neuropsychiatric disorders etc. Contributory factors include late recognition of the problem, failure to be evaluated in formal medical settings, and the failure to seek and secure early interventions.
Who is at risk?
The global lesson from the “Human Genome Project” was that about 10% of all neurological conditions are explained by abnormalities in a single gene. The majority of disorders were thus deemed to be multifactorial- more than one genetic abnormality being responsible, with strong contributions from environmental events that have impact. This probably holds good for NDD as well. In general, having a parent or first degree relative affected by a neuropsychiatric or developmental condition, may double the risk of NDD.
When should we suspect NDD?
At the one end of the spectrum are children with overtly manifested disability with severe problems that are apparent early and demand medical interventions. They only form the tip of the iceberg. The larger group who go undetected, are children with minimal brain dysfunction. Typically, they are slow-learners in school, who find academic progress challenging; may be clumsy and lack dexterity, with poor handwriting; or indeed demonstrate a range of emotional and behavioral patterns.
Why should we take action early?
These children are often the poor performers and/or perceived troublemakers in school. Rather than receiving special attention, they are at worst punished and at best ignored, in many mainstream schools. Without adequate help and support, these children will slowly and surely slide down the educational scale, out of mainstream schooling, into special schooling systems that cannot really tap their potential. Further, children who do not receive support are likely to feel stigmatized and lose their self-confidence.
Where should I take my child, when in doubt?
Your pediatrician should be the first port of call. The class teacher may also have valuable inputs. When either pediatrician or class teacher (or both) suspect a problem, more specialized inputs become necessary. Problems in learning and intelligence are best assessed by a clinical psychologist; problems in motor or other brain function (like epilepsy) by a neurologist, sometimes with the assistance of an occupational therapist; problems in behavior by psychiatrists, often with the assistance of a counselor. When language development is affected, ENT doctors supported by speech and language therapists may need to be consulted. In many instances, comprehensive assessment requires a team approach. Depending on the problem the specialists consulted may require a range of laboratory tests- brain scans, brain wave (EEG) and other electrophysiological tests; blood and urine tests including hormonal assays and so on.
How should I progress once diagnosed?
- Your pediatrician should be your primary support
- Your child’s school needs to be briefed transparently and kept in the loop. Don’t worry about being asked to leave. If the school cannot accept the problem and work with you, it may not be the best place for your child.
- Identify a team of professionals; be consistent in your interactions and regular in follow up. Make sustainable plans and set realistic goals. Prepare for the marathon, not a sprint.
- Don’t focus only on the disability; your child may also have special interests and abilities. Put focus on them too.
- Don’t be preoccupied by academic results; focus on overall development.
- Caregiving is challenging and tiring; share the care as a family, develop your own support networks with other parents and keep your spirit up.