“He is dumb,” an old friend retorted when his seven-year-old child did not greet me ‘the way he was supposed to’. It agitated me. The whole conversation left a sad lingering feeling. I had met this child as an eleven-month-old when his helpless mother came to see me. The infant did not show signs of neurotypical development in many domains. Sadly, this is just one case. Innumerable words such as moron, idiot, demented, retard, and mongoloid are used by the general population, including unaware families of children with some kind of intellectual disability (ID). This article is an attempt to throw light on intellectual disability, and the role of parents, caregivers, community, and society in understanding the needs of children with ID, and to influence appropriate laws to support them.
Understanding the Disability
Intellectual Disability is a neurodevelopmental disorder defined by the World Health Organization (WHO) as a significantly reduced ability to understand new or complex information and to learn and apply new skills. It is estimated that 1pc of the population suffers from some form of ID, 85pc of which is mild (American Psychological Association, APA).
According to the National Sample Survey Organization (NSSO), ID is prevalent in every 20 people per 1000 Indian population. Previously known as mental retardation or MR, Diagnostic Statistical Manual -5, (DSM) led to a change in its terminology in 2013. Before that, in October 2010, Barack Obama signed ‘Rosa’s Law’ in which terms MR and mentally retarded were replaced with ID and individuals with ID. This path-breaking step was taken when a 9-year-old girl with Down syndrome (trisomy 21) was stuck with one word of being ‘retarded’ that did not go down well with her family. They found it inhuman and unfair and wanted to take action. That’s how this law came into motion.
Though still used by those who are used to it or are unaware of the change in terminology, MR is seen as derogatory, and practitioners abstain from using it. So, currently, ID or intellectual developmental disorder defined by DSM 5 is viewed as ‘a disorder with an onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains.’
Early Signs of Intellectual Disability
A child with ID would, thus, have delays in development and learn slower than others in their age group, for example, in walking, talking, understanding rules of social behavior and solving problems in daily tasks. These can be noticed as early as infancy or may not be prominent till early childhood. ID is typically assessed by a range of scores on an IQ test, but one cannot diagnose a child solely based on a score. In fact, DSM is against using it to understand levels of its severity. Instead, it focuses more on the adaptive functioning of an individual that consists of age-appropriate skills a person must have in living their daily life.
So, an initial screening is done with the help of development inventories and if development delays are noticed, qualified professionals carry out a thorough neurodevelopment assessment to understand the deviations in intelligence and functional skills as compared with other children of the same age. Not all standardized tests are language and culture-sensitive, so interviewing parents and observing children in their natural environment can give additional information about their behavioral and cognitive abilities. Central nervous system imaging and genetic and pre-natal tests are also often done to reach a possible cause of ID to plan an ideal course of action.
Overall, the adaptive functioning of an individual consists of age-appropriate skills that a person requires for independent functioning at home, school, work, and in social activities and that is what should be evaluated. Individuals lacking in these abilities will have limited adaptive skills and need ongoing support. DSM looks at these in conceptual, social, and practical domains, and for easy understanding have been divided into the following 4 levels:
School-age children may have learning difficulties in reading, writing, math, concepts of time and money. In very young kids there may not be any apparent concerns so they will not be distinguishable from children without ID. Adults will show reduced abstract thinking, emotion regulation and difficulties in social situations making them more gullible. They may need some support and guidance in complex activities of daily living (ADL).
Language in preschoolers and concepts in older kids will develop slowly compared to peers, and as adults, support will be required for academics, work, and personal life. Basic communication skills are present, relying more on verbal than written, and will show limited decision-making abilities. Therefore, they will require the help of coworkers and supervisors in independent workspaces.
There will be a limited understanding of language, and concepts, and solving problems and making decisions will need support throughout life. Communication in small children will be very little and in later school years can benefit through training and instruction. In the practical domain, support is needed in all ADLs. Challenging behaviors can be seen in some.
There will be complete sensory-motor impairment in children and adolescents may communicate in one word or two. They will be dependent throughout life for all aspects of life. Those without physical impairment may be able to assist in very basic household activities.
Looking at possible factors responsible for ID
Even though no specific causes can be pinpointed, a definite interference in the brain’s development has been clearly established. Sulkes (2022) enumerates some genetic, biological, and environmental factors.
1. Before/at conception:
Inherited disorders such as phenylketonuria (an inborn error of metabolism), Tay-Sachs disease, neurofibromatosis, hypothyroidism, and chromosomal abnormalities like Fragile X syndrome and Down syndrome account for 5 Pc of the cases.
2. During pregnancy:
Severe malnutrition, alcohol (fetal alcohol spectrum disorder, FASD), consumption of drugs, infections (human immunodeficiency virus, cytomegalovirus), and toxins like lead may result in ID. Abnormal brain development, such as porencephalic cysts, gray matter heterotopia, and encephalocele can also lead to it.
3. At birth:
Premature birth, hypoxia (inadequate supply of oxygen)
4. After birth:
Emotional abuse or neglect, undernourishment, poison, head injury, asphyxia, brain tumors, and infections like encephalitis and meningitis can cause ID.
Co-morbidities like epilepsy, communication disorders, cerebral palsy and learning disabilities, anxiety and depression frequently co-occur with ID posing greater challenges. In general, the more severe the cognitive disability and physical problems the person has, the shorter the life expectancy.
Children with ID can’t learn? A myth
Generally, it is thought that ID affects the abilities of children to learn and develop. However, this is not true. Let’s take a look at individuals with severe to profound ID and how they learn. The different facets of development that a child learns in are mainly physical, cognitive, social, and functional. It is, thus, not about the disability, but about developing skills in these areas. Now, learning does not have to be in a school or clinical setting. It can be done anywhere. If a child does not have access to a care center, caregivers at home can plan a daily structure to plan activities.
A planned structure to carry out a daily schedule is important for individuals with severe and profound ID to make sure skills in all domains are being learned and a routine is being formed to foster development. For instance, if they participated in a painting activity at noon, they would receive lunch after washing their hands. This will aid in perceiving the environment and thinking about what comes next, thus, assisting in cognitive development. Parents and caregivers can sing a song or relate a story while changing diapers for very small children fostering language and communication from an early age.
If in a care center, trainers and educators can form groups according to the learning stages of the child. Even then, we would need to adjust activities for each child. At times, we need to shift groups. If children are learning well, we may shift them to a different group that requires higher functioning skills. Once provided with an open environment to talk and the opportunity to work with someone they are comfortable with, children generally adapt well in these new groups.
The learning process
At an awareness stage, children are totally dependent on caregivers and learn to be aware of themselves and the environment. Here, focus would be on using all senses to explore so repeated and consistent pairings of stimulation, for example, moving a ball will make connections in the brain. Gradually, their interest in what they are doing will also develop, and they will comprehend that objects exist even when they cannot see them. The engagement stage relates to children’s learning by engaging in activities to retain and perceive information. In the active learning stage, the idea is to develop skills by active participation in these activities.
So, the environment needs to have proper stimulation and communication for children with severe to profound disabilities to reach their full potential. Otherwise, they may not be able to move forward from the awareness stage. Caretakers and professionals should also encourage learning in personal care and managing difficult emotions. Research has proven the effectiveness of augmented and alternative communication or AAC as a tool used in interactions.
We do this according to each child and not what we are habituated to using in dealing with children in general. Be it any stage a child with ID is in, early stimulation and exposure to stimuli in a consistent manner focusing on an individual’s learning ability can help in developing their mind and body. The ideal way to do this is through play as it comes naturally to children. All that children with severe ID need is motivation, encouragement, and the right environment where they can explore and become confident.
Recognizing Caregiver Stress and Fatigue
Caregiver stress and fatigue is real. They are continuous support systems for them and need support in maintaining their own mental, emotional, and physical well-being. Thus, we should teach them skills to help them cope, adapt, and become effective co-therapists for their children and families with ID. Joining support groups of parents and other caregivers can help us understand that others are going through the same situation and help in cope with our own troubles. It is not necessary to do everything and feel guilty for not being ‘perfect’. Focusing on what you can provide as an individual is enough.
A substantial portion of the country’s rural population gives us a grim picture of the prevalence of ID. Data shows that it has a linear positive relationship with age. This means that age has an important effect on ID in rural populations with the maximum number of individuals with the disability ranging between 5 and 35. We cannot ignore these figures, and it is crucial to educate families in rural areas about the importance of balanced nutrition, the effects of stress, and the potential harm it can inflict on the growing fetus. Spreading awareness about the benefits of education, the minimum age of marriage, and family planning can improve the situation in society.
Take Home Message
Individuals with ID need love, care, encouragement, and the ability to express themselves. I hope history again changes and the slow progress that previous centuries witnessed takes a 10-fold leap. We reflect and are able to change our attitudes and cease to be judgmental of our own families with ID so that there is subsequent eradication of stigmatization and exclusion on an international level.