CHAPTER I

INTRODUCTION
 INTRODUCTION
In early history people with mentally challenged were viewed as

“innocents of God” and provided with humane care either at home or in

monasteries. On the other hand, some cases with mentally challenged were

viewed as visitations of the devil and were subjected to excorcism and

torture. The persons with mental retardation were considered subhuman.

The terms such as amentia, idiocy, feeble minded, moron, imbecile were

used. In many occasions, they were killed at birth by drawing or they were

abandoned in the woods. The birth of such a child was considered a bad

omen to the community and were got rid of in some manner. However, the

treatment of individuals with mental retardation seemed to all the time low

and these people were incarcerated with criminals and individuals with

mental areas. In later years, pity and charity on them developed. Their basic

needs were fulfilled and were expected to live on charity. This was

predominantly the developments in western countries.

During 17th and 18th centuries, which encompassed the age of

reason, understanding of brain functions and certain types of mental

retardation increased. Mental retardation was typically confused with mental

illness or associated with gross physical abnormality and deformity. By the

late 17th century, observers had began to perceive a basic differences

1
between the mentally ill and the mentally deficient.

During the 18th century, many individuals with mental retardation

were provided shelter in institutions like foundling home, hospital and

prisons. Following the American and French revolution in 1800s, education

and training of children with disabilities including mentally handicapped

gained focus. The concept of “they can also be trained to lead lives with

minimal support” was established.

In later years of the middle ages and continuing through the 18th

century, many individuals with mental retardation were persecuted and

executed for practicing witchcraft. There was a little awareness of individual

difference with respect to intelligence.

The history of the systematic treatment of individuals with mental

retardation begins in the 19th century. A French Scientist, Esquirol who

postulated that the essential difference between mentally retarded and

madness lay in the developmental character of the former, gave a formal

scientific explanation in 1838. In mental maladies, he suggested that

mental retardation or idiocy is not a disease, but a condition in which the

mental faculties have never been developed sufficiently. With technological

advancements, mass education became more common. Inability of some

children to handle school curriculum led to the identification of mild mental

2
retardation. Many clinical types of mental retardation were identified and

classification system were proposed. Esquirol, proposed the first

classification system for the retardation that roughly corresponds to the

modern day moderate, severe and profound levels of mental retardation.

The first systematic attempt was also made to educate “Idiotic and

insane” children who today are called mentally challenged and emotionally

disturbed. The idea that individuals with mental retardation could benefit

from education and training finally came into its own. French physicians

Jean Marc Gaspard Itrad (1775-1838), Edward Seguin (1812-1880) and

Maria Montassori (1870-1952) in Italy pioneered systematic efforts to treat

and educate challenged children. Their methods of education were based

mainly on sensory training. The disciplines of medicine and psychology

progressed considerably during this period. In the late 19th and early 20th

centuries suggested that mental retardation was related to genetic factors.

Due to the reason, the attitudes of society towards people with mental

retardation worsened, as it was increasingly attributed to hereditary factors.

Public opinion began to support the segregation of mentally handicapped. A

long series of twin studies comparing the intellectual abilities of identical and

fraternal twins suggested that heredity was the dominant factor in

determining the mental retardation. The belief that mental retardation was

3
caused by environmental factors replaced the belief that mentally

challenged was caused by hereditary factors. In other cases the

environment is so poor that lack of stimulation may causes irreversible

mentally challenged. So it is not a disease or a single entity, rather a term

applied to a condition of retarded mental development present at birth or in

early childhood that is characterized mainly by limited intelligence combined

with difficulty in adaptation.

There was considerable ignorance amongst the general public about

the concept of mental retardation. The social outlook among the public and

even amongst some professional towards the retarded was not only

indifferent but also unhealthy and demoralizing.

In 1919, the American Association for the study of the Feebleminded

came into existence which categorized this condition (Feeble mindedness)

according to the level of severity of intellectual impairment (1921). Tredgold

(1937) explained that mental deficiency is a state of incomplete mental

development of such a kind and degree that the individual is incapable of

adapting himself to the normal environment of his fellows in such a way as

to maintain existence independently of supervision, control or external

support. Doll (1941) stated six criteria by statement or implication generally

considered essential to an adequate definition and concept of mental

4
retardation are social incompetence, due to mentally subnormality, which

has been developed mentally arrested, which obtains at maturity and is of

constitutional origin that is essentially incurable.

Herber (1961) stated that mentally retardation refers to subaverage

general intellectual functioning, which originates during the development

period and is associated with impairment in adaptive behaviour. Bijou

(1966) suggested that Development retardation be treated as observable,

objectively defined stimulus-response function relationships without

recourse to hypothetical mental concepts such as “defective intelligence and

hypothetical biological abnormalities” such as “clinically inferred brain

injury”. From this point of view retarded individual is one who has a limited

repertory of behaviour shaped by events that constitute his history.

American Association of Mental deficiency (AAMD) in 1977, described

mental retardation as significantly subaverage general intellectual

functioning existing concurrently with deficit in adaptive behaviour and

manifested during the developmental period. The American Association of

mental Deficiency presently known as the American Association on Mental

Retardation (AAMR). The AAMR (1983) has defined mental retardation as

“significant subaverage general intellectual functioning resulting in or

associated with concurrent impairments in adaptive behaviour and

5
manifested during the development period”. In this definition general

intellectual functioning refers to the results obtained by administering

standardized general intelligence tests developed for the purpose and

adapted to the conditions of the region / country. The term significantly

subaverage is defined as IQ of 70 or below on standardized measures of

intelligence.

The upper limit intended as a guideline, it could be extended to 75 or

more depending upon the reliability of intelligence test used. Whereas

adaptive behaviour refers to the degree with which the individual meets the

standards of personal independence and social responsibility expected to

his age and cultural group. The expectations of adaptive behaviour vary with

the chronological age. The deficits in adaptive behaviour may be reflected in

the different areas during infancy, early childhood, adolescence and adult

life are as follows:

During infancy and early childhood, are being observed deficits in the

sensory & motor skills development and the communication skills including

speech & language, self-help skills and socialization. During childhood and

adolescence, these are reflected in application of basic academic skills,

daily life activities, application of appropriate reasoning and judgement of

mastery in environment and social skills. In the late adolescence and adult

6
life the inappropriate adaptive behaviour are in vocational & social

responsibilities and performances. The Developmental period in this

definition refers to the period of time between conception and 18 years

(Grossman 1983).

Luckasson, Burtinx and Craig (1992) as endorsed by AAMR defined

mental retardation as substantial limitations in present functioning and

characterized by significantly subaverage in ‘average intellectual

functioning’ existing concurrently with related limitation applicable adaptive

skill in two or more areas of communication, self care, home-living, social

skills, community use, self-direction, health and safety, functional

academics, leisure and work. Mental retardation manifests before age 18

years.

The PD Act of Govt, of India (Person with Disabilities Act), 1995

states that mental retardation means a condition of arrested or incomplete

development of mind of a person, which is specially characterized by sub­

normality of intelligence. There should be equal opportunities, protection of

rights and full participation of a mentally retarded.

The American Association on Mental Retardation (AAMR) arguably

the leading professional organization in the field of mental retardation,

offered another definition of mental retardation in 2002 in its 10th edition of

7
the AAMR reference, manual on definition and terminology. It states that

“mental retardation is a disability characterized by significant limitation both

in intellectual functioning and in adaptive behaviour as expressed in

conceptual, social and practical adaptive skills. This disability originates

before age 18 years” (Borthwick-Duffy, Burtinx, Coulter & Craig 2002).

Mental retardation can be identified/guessed on the basis of the gross

physical characteristics of an individual:

Garden Variety “Familial Types”:

In all physical regards they appear “like everyone else”. Yet these

seemingly normal people when faced with simple intellectual task become

confused, inept and perform in a manner more appropriate to a

chronological age much less than theirs. They do not suffer from severe

types of intellectually deficiency.

Microcephaly:

It is one type of mental deficiency in which, the individual has an

abnormally small head. The major distinguishing feature is cone shaped

cranium with a circumference of less than 19" in adulthood as contrasted to

a normal figure of 22". It is believed to be caused by the early closure of

sutures of the skull so that the growing brain does not find space to expand.

This causes extreme pressure on the brain which may be severely

8
damaged. Microcephalies vary intellectually from moderate to profound

retardation.

Hydrocephalus:

Hydrocephalus or water in brain is often associated with severe

mental defect. Hydrocephalic cases are noted by a globular enlargement of

the cranium resulting from the accumulation of abnormal amounts of

cerebrospinal fluid, both face and body remain normal in size.

Cretinism:

The child appears normal at birth. Towards the end of the first year,

they show signs of sluggishness and apathy, growth is stunted, hand and

feets are stumpy and malformed. The face is characterized by a flat nose,

widely spaced eyes, thick lips, dry skin and hair, a large protruding tongue

and flabby ears, hearing is frequently defective. The intellectual level

correlates with the degree of biological defect. Cretinism is a condition in

which there is deficiency of thyroid gland function and if not treated early,

will cause progressive mental retardation. A child may be born with

complete absence of the thyroid gland. The child may be given thyroid

regularly for years.

Mongolism:

Now a day the child with mongolism is often described as having

9
Down’s syndrome. A Down’s syndrome baby is “born different”. He is

different both physically and mentally from a normal baby. They have

slanting eyes with epicanthic folds, the ear may be small, the tongue may be

big and thick, thin lips, misshapen teeth, hands and feets are stumpy,

clumsy and broad short stature with short broad fingers and toes. The small

head contains a brain that is also small, which accounts for the reduced

mental capacity. Down’s syndrome is the commonest of the numerical

chromosomal anomaly found in humans. There are 47 chromosomes

instead of 46.

Classification of the Mental Retardation

Classification provides an organised scheme for the categorisation of

many kinds of phenomena relevant to the human conditions. Such

information properly ordered and conceptionalised is essential for

acquisition of knowledge in the prevention and control of disability and its

manifestations and in the promotion of physical, mental and social well­

being.

A precise classification of mental retardation is based both on the

nature of the primary disability as far as the severity of the mentally

retarded. With different purposes and with lack of natural boundaries,

system of classification of mentally challenge is frequently arbitrary,

10
overlapping or even mutually exclusive or contradictory. In 1975

classification systems of mental retardation provide an objectively

specifiable way of delimiting populations of individuals who for various

reasons are likely to encounter difficulty in acquirihg the skills necessary for

successful community living. The mental retardation can be classified either

by degree, form, causes and symptoms cluster.

Classification by degree

This reflects the recognition that there is a continuum of abilities with

in the mentally retarded population. The criteria used by the Diagnostic

Statistical Manual III (DSM-III) to classify a person as mentally retarded are

almost identical to the AAMD criteria. International Classification of disease

(ICD) has classified mentally retarded on the basis of IQ. The Classification

given by DSM-III and ICD-10 is almost same, the only difference is DSM-III

has also included borderline category.

Borderline Mild Moderate Severe Profound

(IQ) (IQ) (IQ) (IQ) (IQ)

A.A.M.D. 70 to 85 50 to 70 35 to 50 20 to 35 •

DSM-III 70 to 85 50 to 70 35 to 50 20 to 35 below 20

I.C.D.-10 * 50 to 70 35 to 50 20 to 35 below 20

11
Classification by form:

This divided mental retardation into two groups. Those who fall into

lower portion of the normal distribution and those whose development has

been altered by some pathologic condition.

Known Case Unknown Case

Extrinsic Intrinsic

Pathological Sub-cultural

Exogenous Endogenous

Organic Garden Variety

Cultural familial

Classification by cause

The medical profession classifies mental retardation based on the

causes / etiology. The common ten causes given by AAMD have been

classified into ten categories by Grossman (1977) which are: infections and

intoxications, Trauma or Physical agents, metabolism or nutrition, Gross

brain disease, gestational disorders, psychiatric disorder, chromosal

abnormality unknown prenatal influence.

Classification by symptom clusters

Clustering of behaviours or syndromes is a fairly common procedure

which differs from the three classification schemes mentioned above.

12
 Grossman (1977) finally developed a system, which employs the

terminology ‘mild’, ‘moderate’, ‘severe’ and ‘profound’, that has been

universally recognized.

1. Mild Mental Retardation (Educable)

The mild or Educable level of Mental Retardation falls between two

and three Stanford deviation below the mean an IQ from 52 to 67 if the

Stanford Binet intelligence test is used, or from 55 to 69 if one of the

Wechsler scale is used. Approximately 85% of all mentally challenged

persons fall into the category of mild mental retardation (APA, 1994). They

are called ‘educable’ because they can benefit from an academic education

and can support themselves during adulthood. They have the following

potentialities for developments.

a) Minimum educability in reading, writing, spelling, arithmetic and so

forth.

b) Capacity for social adjustment to a point where he or she can get

along independently in the community

c) Minimum occupational adequacy such that he/she can later become

self-supporting partially or totally at a marginal level Kolstoe (1976).

The causes of Mild Mental Retardation are typically attributed to

environmental disadvantage, a variety of biological factors, or some

interaction between the two.

13
2. Moderate Mental Retardation (Trainable)

The moderate or trainable level of mental retardation falls between

three and four standard deviations below the mean, an IQ from 36 to 51 if

the standard deviation below the mean, an IQ from 36 to 51 if the Stanford -

Binet is administered or from 39 to 54 if one of the Wechsler Scales is used.

Approximately 10% of people with mental retardation, function at a level of

moderate retardation with an approximate age of from six to eight years.

These children are typically more visible physically, behaviourally and

educationally than children with mild mental retardation. Individuals with

moderate retardation have more limited educational and post school social

and vocational adjustment expectations than individuals with mild mental

retardation. Although the moderately may be able to recognise some written

words or even read some simple sentences, essentially they are functionally

illiterate; very few become independent. Any employment they obtain is

usually of a repetitive, unskilled nature, perhaps in a sheltered setting where

income is not dependent on production.

Moderate mental retardation is almost always due to some form of

biological insult or specific and isolatable genetic anomalies. Down’s

syndrome, associated with the chromosomal defects of non disjunction,

translocation, and mosaicism is the most frequent cause of moderate

mental retardation (Polland & Haisely, 1985).

14
3. Severe Mental Retardation (Custodial)

People with severe mental retardation have IQ’s in the range of 20 to

35 for Standford Binet and from 25 to 39 for Wechsler Scale.

The mental age is from about three years, nine month to six years.

They may ultimately achieve mental age as high as four or five.

Approximately 4% of people with mental retardation are severely retarded.

Although children classified as having severe mental retardation may differ

somewhat in motor and language skill development and the extent to which

other disabilities are present, they overlap sufficiently in characteristics to be

discussed together. They usually require careful supervision, profit

somewhat from vocational training and can perform only basic vocational

tasks in structured and sheltered settings. Their understanding of

communication is usually better than their speech. Most adapt well of life in

the community, in group homes and community nursing homes or with their

families (APA, 1994).

Severe mental retardation are typically caused by chromosomal

abnormalities, as well as prenatal and perinatal trauma. The severity of

injury of the brain and the systematic pathology that occurs in these children

is often associated with multiple physical and sensory disabilities. They tend

to be ambulatory.

15
4. Profound Mental Retardation

Individuals with profound mental retardation have IQ below 20 and will

generally not develop beyond mental age of 3 with an estimated adult

mental age of three years eight months or less. People with profound

mental retardation are also more likely to have multiple disabilities. More

useful assessment information, in terms of programme planing, is generally

obtained from adaptive behaviour measures and early developmental

screening test (Bakin, 1985). Around 1% of all people with mental

retardation are profoundly retarded. The probability of concomitant

neurological damage is high and many are non-ambulatory. They may learn

to walk and to speak a few words. Until recently, most of these persons

were unable to feed and toilet themselves, but the widespread use of

behaviour modification techniques has increased the number who have

such skills. For this group total supervision is necessary, usually in an

institutionalized setting.

Hence, the different methods for classifying mental retardation can be

placed under the category of medical, psychological and educational

methods (NIMH, 1989). The medical method is based on the cause, the

psychological method on the level of intelligence and the educational

method on the current level of functioning of the person with mental

retardation.

16
 On the basis of the terminology and classification given by Luckasson

et al (1992), a model of mental retardation was proposed which has been

given below:

Capabilities Environments

• Intelligence • Home
• Adaptive skills • Work/ School
• Community

Functioning
T i
Supports

AAMR’s Model of Mental Retardation

This model emphasizes that traits or capabilities are only one part of

the construct whereas the previous concept viewed mental retardation as a

trait of innate aspect of the person, such as being tall or clumsy and focused

only on person’s capabilities or lack of them. The model considers mental

retardation to be a problem in functioning within a social or community

setting. The instinctual disabilities operate in a specific environment to

cause this functional problem, which is influenced by the presence or

absence of natural and applied supports. This model may account for the

observer variability in functioning of persons with the same underlying

17
condition causing mental retardation and which the old concept failed to

explain. This concept recognizes that there are multiple dimensions of

causative factors including biochemical, social, behavioural and educational

and that factor from more than one dimension may be relevant to the

etiology of mental retardation in a particular individual (Coulter, 1991).

This model also implies that we should not look for unitary cause of

mental retardation in a particular individual rather multiple factors that

interact to cause problems in functioning should be identified. The multiple

risk factor approach rise from the current thinking about epidemiology

(Scott, 1998).

Causation of Mental Retardation

The causative factors of mental retardation are varied and

widespread. There are factors with even affect the foetus at conception or

even before conception, such as age of mother, health of the mother, and/or

chromosomal and genetic disorders. These multiple causes may be broadly

classified under biological risk factors and environmental risk factors. Under

the biological risk factors, the causes influencing before conception, in

prenatal stage, natal stage and post-natal stage can be listed. Biological risk

factors are those that develop within the body as part of one’s basic biology

and organic make up. They include genetic and other inborn features

18
metabolic aspects and interaction of varied complex systems of the body.

Genetic causes are purely biological in nature whereas others are biological

which are enforced with environmental influences.

Causes before conception -

The age of mother, addiction and family size are the causes, which

influences before conception. The best period for conception is between 20

and 30 years of age. A very young teenage mother is likely to have

problems due to biological immaturity. There are high risk group for

abortion, premature deliveries giving birth to low birth weight babies, or

babies with chromosomal abnormalities etc. As the maternal age advances

(above 30 years) they are the candidates for high-risk pregnancy and

deliveries. They may face problems of difficult, delayed deliveries, babies

born with chromosomal and other physical abnormalities. Thus, age of the

mother plays an important role in the delivery of a healthy, normal baby.

Nutrition and health status of the mother before pregnancies are also very

important for conception and development of the foetus. A healthy mother

brings forth a healthy child. Any addictions such as drug abuse, smoking

and chewing of tobacco and alcohol consumption can jeopardise the health

status of the mother and influence the developing foetus adversely

(microcephaly, low birth weight etc.). Further,limiting of the family size is

19
good for the health of the mother and the well being of the child. As the birth

order of the child increases, there is a possibility of increase in the risk

factor.

Prenatal causes (during pregnancy)-

Mental retardation may be caused by no or poor antenatal checkups,

abortions - repeated, attempted, threatened, poor nutrition status of mother,

diabetes, Rh-incompatibility, hypertension (high blood pressure),

convulsions (fits), infection - Toxoplasmosis, others, Rubella, Herpes

(TORCH), Sexually transmitted diseases (STD), Physical trauma / Injury,

Emotional Stress / Trauma, Drugs, Irradiation, Addictions - Tobacco /

Nicotine - Alcohol, potentially harmful medication, multiple pregnancies

(twins, triplets, maternal mental illness, system pathology - heart, kidney,

liver diseases and bleeding during pregnancy etc.

Chromosomal disorders: There are 23 pairs of chromosomes in each

human cell. Every person gets half the number of chromosomes from each

parent. Errors in chromosomes produce conditions with medical problems

and most of these conditions cause mentally challenge. The error may be in

the structure of the chromosome or the error may be in the number of

chromosomes being too many or too few. One common condition due to

error in the chromosome number is Down’s Syndrome. In this condition

20
generally there is an extra chromosome at number 21.

Genetic disorders: Defect in the genes, transmitted from the parent to the

offspring can result in certain condition with mentally challenge. Some of the

examples of such genetic disorders are phenylketonuria, lipidoses etc.

Teratogens: It may be defined as an agent or factor, which can cause

abnormalities of form and function in an exposed foetus. These agents can

be infective agents, chemical, actinic etc.

Hypoxia: Cellular integrity of brain is very easily damaged by changes in the

oxygen and glucose level of blood at any time during life. It is that neurons

cannot withstand oxygen deprivation for more 5 minutes. The status of total

oxygen deprivation (anoxia) or low oxygen supply (hypoxia) can affect the

embryo foetus (antenatally) during the period of delivery or postnatally.

Hypoglycemia: Like oxygen adequate supply of glucose to nervous tissue is

vital. The normal brain usually utilizes only glucose for its metabolic

requirements. Hence hypoglycemia is manifested principally as central

nervous system dysfunction.

Metabolic errors: In certain cases of “In born errors of metabolism” the CNS

is grossly affected leading to mentally challenged. In these cases the

metabolism of one of these i.e. proteins (aminoacids) carbohydrates, fats,

and other important substances are affected at some stage of their normal

21
cycle, causing accumulation of products in abnormal quantities. These all

are some prenatal causes of mental retardation.

Perinatal / Natal causes (during delivery) -

Premature birth (being born between 28 week and 34 weeks born

before full term), post mature (born after 42 weeks pregnancy), multiple

pregnancies (twins, triplets), difficult and prolonged labour (labour for more

than 24 hours), forceps / instrumental delivery / vacuum extraction,

caesarian (delivery by surgery), bleeding during delivery, abnormal

presentation - Buttocks, Breech, Brow / face, Hand / Shoulder, foot / leg,

prolapsed cord / knotting, cord round the neck, unhygienic delivery place,

instruments, handling, convulsions during delivery, low birth weight babies

(less than 2 kg.), lack of respiration immediately after birth (the brain suffers

irreversible damage if it is deprived of oxygen for 4 or 5 minutes), trauma to

the head of the new born due to factors such as excessive moulding due to

disproportion between foetal head and birth canal of prolonged labour of

delivery by improper use of instruments, abnormal position of the foetus in

the uterus, abnormal position of the placenta, excessive coiling of umbilical

cord around the neck of the foetus, toxaemia of pregnancy with high blood

pressure, bleeding in the brain of the newborn due to various causes,

severe jaundice in the new born due to various causes, medicines

22
administered to the mother such as anaesthetics and pain killers are some

natal causes of mental retardation.

Post natal causes (from birth upto 18 years of age)-

Delayed birth cry : birth cry after 5 minutes, low birth weight less than

2 to 2.5 kg., prematurity / post maturity, colour of the baby - pale, yellow,

blue, plethoric, activity of baby - dull, lethargic, jittery irritable, obvious

congenital anomalies - Microcephaly, Hydrocephalous, abnormality of limbs,

Cleft lip / palate, visual / auditory impairment, system involvements

cardiovascular system, Respiratory system, infections / Septicaemias

(infection in the blood), Trauma / Injury, feeding problems (vomiting, spitting,

difficulty in sucking and swallowing), Jaundice, nutritional deficiencies /

Malnutrition in child: brain is vulnerable to malnutrition during 12-18 weeks

of foetal life when multiplication of nerve cells is very active and from birth to

the end of second year of life. Inadequate intake of proteins and

carbohydrates during this period can lead to mental retardation, Infections in

the child such as meningitis and encephalitis (brain fever) can lead to

mental retardation, repeated fits in the child can damage the brain and lead

to mental impairment, any injury to the brain from accidents or falls can lead

to mental retardation. If immunization (rabies, whooping cough etc.) are not

done properly the child can lead to mental retardation. Thyroid deficiency -

23
(retinism because of deficiency of thyroid hormone), the child is dull, has

rough skin, sprase thin hair, thick protruding tongue, puffy face and eyes,

constipation, rough coarse voice and mental deficiency.

Environmental risk factors are health related risks that exist outside

the person and over which the individual has little or no control. These

include social, physical and psychosocial causes.

Social environment causes for disability are a function of the

expectations and opportunities that accompany specific socio-cultural

environment.

Attitude, assumptions, preferences or prejudices encountered

throughout society help to create social environmental disability risks e.g.

occupational setting, certain physical skills, abilities and characteristics.

Because of the physical demands and social cultural expectations of that

environment the likelihood or risk of a functional limitation becoming a

disability is greater than in cultural setting that assigns less value to these

characteristics. Socio-environment risk for disability occurs when individual

is required to perform tasks that exceed their physical or mental abilities.

Physical environmental causes in which injury or disease can trigger a

process that leads to disability. They place individuals in circumstances

leading to impairment and functional limitations.

24
 Less than 15% of the cases of mentally challenges have a known

organic or medical cause (Smith, 1971). Thus for most persons diagnosed

as mentally retarded, no specific reason for their deficits can be identified.

Most cases of mental retardation with a known cause, or etiology fall in the

severe or profound range.

Psycho-Social causes refer to the environmental influences. Which

can leads to mental retardation. During prenatal stage the factors like

relative infertility, repeated abortions, conception after many years of

marriage, large family, lack of family planning, poor spacing between births,

illegitimate unwanted child, only child - a child born after a long period after

the earlier pregnancy and difficulties in previous pregnancy may be

responsible for mental retardation.

The premature baby, low birth baby, difficulties and problems in the

newborn period such as illness, prolonged stay in hospital, surgery, severe

congenital abnormalities and feeding problems and Parents: Very young or

very old parents, mental illness, un-preparedness for the arrival of the baby,

poor general health, addictions (drug and alcohol), poverty, single parent

(divorce, separation, bereavement, marital disharmony, poor family

resources, poor personal relationships with family and poor family support).

25
 All the above-mentioned conditions play an important role in the

development of the child and may contribute to causation of mental

retardation.

Mentally sub-normally, mental deficiency, mental impairment, mental

handicap, mental retardation, intellectual disability and mentally challenge

are the terms used to refer the same condition. Mental impairment is

primarily not a medical problem; but it is a psychological, social and

educational problem as well.

In addition to the deficits in Intelligence and adaptive behaviour, some

persons with mental retardation have medical problems and associated

handicaps. Some of the most common medical problems encountered in

persons with mental retardation are epilepsy, nutritional disorders, attention

deficit hyperactivity disorder, and psychiatric problems such as autism,

psychosis and neurotic disturbances.

About forty percent of persons with mental retardation have

convulsions of one type or the other. The convulsions vary in their frequency

duration and type depending upon the nature of brain damage. Fits are

more common in persons with severe and profound mental retardation than

in those with mild or moderate mental retardation.

26
 Brain has active growth during the first trimester of pregnancy and

from birth till the end of 2 years after birth. Malnutrition especially during the

first two years of life can seriously impair brain development^continuing the

child on breast milk beyond 6 months and not adding supplementary food

restricts the intake of proteins, fats, vitamins and minerals leading on to

growth retardation. Some children with mental retardation, because of their

inability to chew and swallow are not given the required quantity of food and

this further leads on to delay in growth. Some of the common nutritional

disorders are protein, calories malnutrition, deficiency of vitamin A & B.

Some of the children with mental retardation exhibit hyperkinetic

behaviour and this generally occurs in children with brain damage. The

features of ADHD are being excessively active, distractible, having poor

attention span, restlessness, lack of inhibition and poorly coordinated

activity. They are impulsive, aggressive and show fluctuation in their mood.

Presence of hyperkinetic behaviour can be brought down with medication.

Some of the psychiatric disturbances in mentally challenged are

autistic behaviour, psychotic states such as schizophrenia, mania and

depression and neurotic such as anxiety neurosis and hysterical neurosis.

Features similar to autism are present in children with mental retardation

whereas the psychotic and neurotic states are more common with adults

with mental retardation.

27
 Diagnosis of mental illness in mental retardation needs an expert,

detailed psychiatrist evaluation. Some symptoms of mental illness are

noticed in a person with mental retardation are remaining aloof for long

periods of time, muttering to self and food refusal, unprovoked aggressive

behaviour, states of extreme elation or depression of mood, lack of sleep or

disturbed sleep rhythm and sudden change in behaviour.

There are some conditions which are generally mistaken for mentally

retarded like early infantile autism, child with hearing impairment, child with

emotional disturbance, cultural deprivation and lack of stimulation, specific

learning disabilities, childhood psychosis, child with visual handicap and

child with physical handicap. But actually these are the cases of multiple

disabilities. The individual are with more than one of the four disabilities

physical, hearing, vision and mental. Children with multiple disabilities grow,

learn and develop much more slowly than other group of children with single

handicap, cerebral palsy with mentally challenge is one of the commonest

forms of the multiple disability. It is difficult to identify the intensity of each of

the disability in a person with multiple disabilities. Moreover, it is also difficult

to determine the way in which combination of disabilities affects the

person’s behaviour.

28
Epidemiology
While retracing our steps on the sands of time, we encounter several

instances when people with mental deficiency have been ‘visible’ in the

ordinary homes of every society. A flash back on the social system and the

supports available for the persons with mental handicap does not indicate a

separate society for them on grounds of their uniqueness.

Estimation of the incidence and prevalence of mental retardation

presents major difficulties, but is essential if appropriate services are to be

planned and provided and the effects of preventative programs evaluated. A

slight change in the IQ definition of “normal” has major effects on the

apparent prevalence of retardation. If intelligence has a normal distribution,

then 3% of the population must fall into the retarded range. Although

statistically accurate, such a statement ignores the positive effects of early

intervention and family support, which may improve educability, adaptive

behaviours and attitudinal changes. This improvement and change may

influence life expectancy and natural disasters or change in public policy,

which may increase biological risks to the whole population from time to

time.

In 1929, in an important survey of school children in six areas of the

United Kingdom, E.O. Lewis found that the total prevalence of mental

29
retardation was 27 per 1000. Subsequent studies in many countries have

generally shown that the prevalence of mental retardation is about 10-30

per 1000. According to the DSM-IV the prevalence of mental retardation has

been estimated at approximately 1 %.

Throughout the world, the prevalence of mental retardation is

estimated to be 30 per thousand. Nearly 75% of people diagnose to have

mental retardation, fall in the category of mild mental retardation, while the

remaining 25% having IQ 50 or below are classified as moderately, severely

or profoundly retarded. Nearly 10% of the mentally handicapped people are

with medical problems like Epilepsy, Hyperkinesis or mental illness.

Approximately 4% of the children with mental retardation have multiple

disabilities.

A highly systematized and fairly large scale study has been

conducted by the Federation for the welfare of Mentally Retarded (1977) on

2742 children from 12 municipal schools of Delhi attended by children from

lower strata of the society. It has been revealed that 10.3% of the children

were retarded, 9% of whom were mildly retarded mainly due to differential

environmental and lower socio economic background.

In a large scale survey (including 4373 villages and 2503 urban

blocks) conducted by the National Sample Survey Organisation (NSSO) in

30
1991 of children in the age group of 0-14 years with developmental delays it

was found that 31 out of 1000 children in rural areas and 9 out of 1000

children in the urban areas had developmental delays, usually associated

with mentally challenge as in Table 1 below.

Table 1.1: Prevalence studies based on National Sample Survey

Organisation

Sr. Investigators Year Target Place of Prevalence Criteria

No. population study rate/1000 employed

1. NSSO 1991 Stratified All India 31.0 Developmental

Rural delayed

2. NSSO 1991 Stratified All India 9.0 Developmental

Urban delayed

The census of 1991 reveals the distribution of person with mentally

challenge based on their age range as follows:

Age Percentage

0-4 years 20%

0-15 years 40%

16 years and above 40%

Total 100%

According to estimate of AAMR, about 2% of the total population, i.e.

is million out of the 200 million are mentally retarded in the United States.

31
 From the findings of a few random sample surveys in Mumbai,

Kolkata, Delhi, Mysore and Nagpur and also from World Health

Organisation (WHO) reports (1968) the number of mentally challenged in

India can be reasonably assessed to approximately 3% of the total

population.

In India, the empirical data of surveys conducted by different

geographical areas of the country estimate the prevalence rate of mental

retardation in the population surveyed to be 2% to 3%. An average of 2.5%

of all children are mild and moderately retarded and 0.5% are severely

retarded. In the rural areas the incidence rate is more. Two percent of

general population is mentally retarded. Three quarters of them are mild and

one forth is severe (Panda, 1999).

When mental retardation defined by IQ and adaptive behaviour, as

recommended, prevalence drops to under 1 percent (Scott, 1994). This

difference might reflect the fact that about half of those with mental

retardation are not identified because their behaviour is sufficiently adaptive

in their environment. The prevalence of mental retardation is estimated at

about 2 to 3 percent of the general population when IQ is taken as the

criterion as it often is (Singh, Oswald, & Ellis, 1998).

32
 It is difficult to collect the accurate prevalence of mentally retarded in

a country like India, due to reasons unreliable methods of registration and a

small portion of population with mild mentally retardation remains

unidentified, as they may be engaged in a semi-skilled vocation and getting

along with a structured and restricted environment.

Mentally challenged: Their impact on the parents

The family is the oldest and most enduring of the human institutions.

Family is considered as the basic unit of society, to meet the needs of

individuals and those of other societal institutions and is a link between

individual and the society. The family provides a socially acceptable vehicle

to bring children into the world. Many individuals see children as an

extension of themselves. Some perceive their children as means to attain

some degree of immortality. Still others have children because it appears to

be normal thing to have. Unfortunately, the conception of some children is

unplanned, and they are unwanted (Chinn, Drew and Logan, 1984).

Birth of a mentally handicapped child in a family is an unexpected

stressful event for the family members. Farber (1959) terms such a birth a

point of arrested family development, which continue overtime, affecting the

entire family system.

33
 Turnbull and Turnbull (1986) mention the stress that these families

undergo as the child with disability moves through the life cycle. During birth

and early childhood the concerns are centered around discovering

diagnosis, gradual awareness assessing early childhood services, setting,

expectations. The childhood stage is connected with school related to

sexuality, growing stigma, growing physical care needs, need for developing

self advocacy skills and adulthood, the right to grow up, uncertainty about

future, etc.

Most of the families reactions to the individual with mental disability

runs the gamut from absolute rejection to absolute acceptance, from

intensive hate to intensive love, from total neglect to total protection. This is

an established fact that the presence of a person with mentally challenge

has serious impact on family. But impact may be different in quality and

quantity depending upon the various factor like coping skills of family,

characteristics, coping skills of the family members, age of the child, level of

retardation, presence and absence of associated condition, emotional,

social physical, family support to the family and the financial support.

Mental retardation calls for life long adjustments on the part of the

parents and other family members. The presence of a mentally challenge in

the family lowers their functional abilities, which leads to disorganization of

34
families. It sometimes becomes difficult for parents to meet the needs of the

mentally challenge child as also the needs related to family functioning as a

whole. The entire family including parents, brother and sisters and extended

family members such as grand parents get affected in specific way because

of mentally retarded child in family.

Parents experience variety of stresses and strains. It is traumatic

especially when parents learn or suspect disability in the child and when

parents grow old and worry about the welfare of the child.

Parenting a child with mental retardation is not an easy job

(Peshaweria, 1992). Due to the child with mental retardation, the parents

are known to get impacted in many ways. These include, parents feeling

sad, depressed at various stages of child’s life and experiencing other

emotional reactions. Their social life may get affected with recreational and

leisure activities getting reduced.

The impact of a disabled child on the parents has been well

documented. Emotional reactions are the most commonly cited impact due

to the presence of the child with MR in the family (Bristol, 1987). Although,

there will be always individual differences in the reactions of each of the

parents, usually they are known to pass through a sequence of stages of

reactions like shock, denial, grief etc, after knowing the diagnosis of

35
disability in their child. The responsibilities associated with the care of

children with mental retardation may impact the parent’s psychological,

physical and financial well being overtime (Quine & Paul, 1985). Parents

may also develop low self-esteem as a result of having a child with MR

(Turnbull & Turnbull, 1990).

Accepting a child with mental handicap becomes difficult to parents

and the whole family particularly when competence and achievement are

very much valued in modern world. Thus, when it suddenly becomes

necessary for parents to love some one who has a very limited capacity,

they are put in conflicting situation and result in a great deal of stress. The

effect of rearing a handicapped child on the family appears to be complex.

Parents get more frustrated and disappointed by lack of improvement and

difficulty in management. Some parents demand various treatments as

magical drugs, shock treatment, surgery and other illusory remedies.

Olshansky (1962) has speculated that almost all parents who have a

mentally retarded child suffer from chronic sorrow through out their lives.

The extent of this sorrow may differ from one parent to another but most will

have manifestation of sorrow in varying degrees. The birth and continuing

care of mentally retarded children are often stressful experiences for family

members as these children’s difficulties inevitably touch the lives of those

36
around them (Crnic, Friedrich, Greenberg, 1983). Consequently parents of

retarded children have generally been viewed as being “at risk” for a variety

of family life problems and emotional difficulties. Paramount among their

family life problems are unusual care giving demands and restrictive time

demands (Beckman, 1983). For many family members especially mothers,

management of daily needs of retarded child may constitute an all time

consuming task (Bradshaw & Lawton, 1978).

In addition, families often face increased financial burdens (Holroyed,

1974). At the same time family income may get reduced because care

giving responsibilities make it difficult for two parents to work outside the

home.

The stigma of the handicapped person is one of shame and inferiority

(Wright, 1960) which marks the person as tinted and discounted (Goffman,

1963). For many handicapped individuals and their families the most crucial

consequences of being handicapped are often not the direct physical or

mental results of impairment itself, but rather the attitudes and reactions of

those in the society, who are not handicapped.

Most of parents were distressed that their quality of life has declined

as they feel isolated from the rest of the society due to presence of a

mentally challenge child in the family. Family with few children, with

adequate crisis meeting resources, and living in a supportive community

37
appear to be associated with ability to cope successfully with the stress and

demands of having a child disabilities. Being highly educated with a strong

spousal relationship, as well adjusted personality prior to the birth of the

child, a possible view and realistic expectation of their challenged children

and participating in a parental support group seem to lead to successful

adjustment.

All the factors so far discussed may directly/indirectly affect the

functioning of family. Families both affect and are affected by their disabled

members in various ways. Mentally retarded person has a right to live and

received recognition and importance. However it creates additional need for

parents and a strong need to strengthen the social, emotional, physical and

personal support systems among the families of these mentally retarded

children and the society at large. Mental retardation bring untold amount of

misery, suffering and emotional distress to the parents of these unfortunate

hildren. Present study is expected to throw some light on perceptions of

»nts about the stressful effects caused by presence of mentally retarded

I and also the quality of the life of parents, which depends on the

u... 'ent support sources.

With this we may now pass on to next Chapter 2 dealing with Review

of Literature in this specific area.

38
CZb be what we are, and to become what we are
capable of becoming, is the only end of life.

Robert Louis Stevensoi

9{ofiner aim can man attain than to alleviate

another's pain.

Alexander Tope