Clinical Practice Guidelines for the

Diagnosis and Management of Children With Mental

Retardation
Dr. Satish Chandra Girimaji1
INTRODUCTION
Intelligence, which is highly evolved in human beings, is defined by Wechsler as ‘the global capacity of the
person and to deal effectively with his / her environment’ (Wechsler 1939). We make use of our cognitive or
[1]

intellectual ability it to learn, understand, imagine, remember, think, adapt and modify our environments.
Given this fact, it is no wonder that a diminished intellectual capability puts significant limitations on the
person’s functioning. Mental retardation (MR), the hallmark of which is diminished intellectual capability, is
thus the most disabling of all disabilities with significant consequences for the individual themselves, their
families. The societal responses to MR may make problems more complicated for these individuals. History is
replete with instances of their neglect, abuse, and victimization. These lessons from the history have taught us
that they must be treated with respect and dignity and their rights have to be recognized like any other human
being.
MR can be viewed from several perspectives: as an extreme of variation in individual abilities (psychometric),
as a biomedical problem (consequence of disease or disorder affecting the brain) or as a condition that makes
people face disadvantages in society (socio-cultural). Viewing mental retardation purely from any of these
perspectives leads to severe limitations in our total understating and dealing with the problem. A balanced bio-
psycho-social perspective is the best way to understand and deal with MR.
Though the guidelines described here pertain primarily to children, issues concerning adults are
addressed wherever needed. In preparing these guidelines, search was made for available practice
parameters, guidelines, reviews, and reports. In addition, search through Pubmed and other sources
were made for relevant publications on from India and abroad. Some of the notable ones were AACAP
practice parameters on mental retardation and comorbid mental disorders, AAN practice parameter
[2]

on evaluation of the child with global developmental delay, review on psychopharmcotherapy in

[3]

intellectual disability, practitioner review on psychopharmacology in MR, and 10 year review on MR,
[4] [5] [6]

and a WHO publication on MR. [7]

CONCEPTAND DEFINITION:
MR belongs to the class of developmental disabilities (DD). These are conditions in which one or more of
human capabilities fail to develop adequately from childhood. Apart from MR, other DD’s are specific delays
in speech and language, in motor skills, in scholastic skills, and autistic spectrum disorders. Most of them are
static encephalopathies, meaning that though they have some significant delay, they continue to improve with
the passage of time, albeit as a slower rate. Most often, these conditions result from some or other form of
damage or interference, either genetic or environmental, to smooth and orderly development of the brain or
brain circuits. However, there is a small sub-group of children who have progressive decline intellectual
abilities (progressive encephalopathies or childhood onset degenerative disorders).
Core concept of mental retardation has remained the same over the centuries, though has been worded
differently at different times. Widely accepted definitions that are currently available stress on 3 dimensions:
the intellectual (IQ less than 70), developmental (onset before 18 years of age) and thirdly the social
(diminished ability to adapt to the daily demands of the normal social environment) criteria. The DSM IV, for
instance defines MR as ‘ Significantly sub-average intellectual functioning: an IQ of approximately 70 or
below on an individually administered IQ test (for infants, a clinical judgment of significantly sub-average
1. Professor, Child and Adolescent Psychiatry Unit, Dept. of Psychiatry,
NIMHANS, Hosur Road, Bangalore – 560 029, girimaji@nimhans.kar.nic.in
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intellectual functioning), with concurrent deficits or impairments in present adaptive functioning (i.e., the
person’s effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at
least two of the following areas: communication, self-care, home living, social/interpersonal skills, use of
community resources, self-direction, functional academic skills, work, leisure, health, and safety, and onset is
before age 18 years.[8]

PREVALENCE
Prevalence of mental retardation in India is around 2% for mild mental retardation and 0.5% for severe mental
retardation (defined as IQ less than 50).[9]. The major correlates are excess in males and rural areas. At least
one-third of children attending Child Psychiatry OPD’s or Child Guidance Clinics have MR.
CAUSES OF MR
Any disease or adverse influence that interferes with the smooth, orderly, and orchestrated development of the
brain can result in MR. More than 500 causes for MR has been identified and the list is still growing . ] These [10

adverse influences can be classified into prenatal, perinatal and postnatal causes depending on their timing.
Table 1 lists these categories, types, and common examples. New causes such as sub-telomeric deletions and
copy number variations (genomic disorders) have been discovered recently.
In India, Indian Council of Medical Research (ICMR) carried out a multi-centric study involving 1314 children
with MR without an obvious environmental cause, and found that chromosomal anomalies were present in 23.7
per cent, metabolic defects in 5.0 per cent and an identifiable genetic syndrome in 11.6 per cent of the patients. [11]

Table 1: Etiologic classification of MR

CATEGORY TYPE EXAMPLES
Prenatal Chromosomal disorders Down syndrome, Klinefelter syndrome, Turner syndrome, Cri-
du-chat syndrome, Prader Willi syndrome, Angelman
syndrome, William syndrome

Single gene disorders Inborn errors of metabolism: Galactosemia,

phenylketonuria, Mucopolysaccharidoses, Tay- Sachs disease,
Lesch-Nyhan syndrome, Hypothyroidism,
Neuro-cutaneous: Tuberous sclerosis, and neurofibromatosis
Brain malformations such as autosomal recessive primary
microcephaly, hydrocephalus
Others: fragile X syndrome, Rett syndrome, Laurence Moon
Bardet Biedl syndrome, Smith-Lemli-Opitz syndrome, Coffin
Lowry syndrome
Other conditions of uncertain Rubinstein Taybi syndrome
genetic origin De Lange syndrome

Adverse maternal Deficiencies: iodine deficiency, folate deficiency

/environmental influences Severe malnutrition in pregnancy
Using substances: alcohol (maternal alcohol syndrome),
nicotine, and cocaine during early pregnancy
Exposure to other harmful chemicals: pollutants, heavy
metals, abortifacients, and teratogenic medications such as
thalidomide, phenytoin and warfarin sodium in early
pregnancy
Maternal infections: rubella, syphillis, toxoplasmosis,
cytomegalovirus, Herpes and HIV
Others: excessive exposure to radiation, Rh iso-immunization

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 Perinatal Third trimester Complications of pregnancy: Ecclampsia
Maternal Diseases: cardiac, renal, diabetes
Placental dysfunction /deprivation of supply
Labour Severe prematurity, very low birth weight, hypoxic ischemic
encephalopathy (birth asphyxia), Difficult and/or complicated
delivery, Birth trauma
Neonatal Septicemia, severe jaundice, hypoglycemia
Postnatal Brain infections: tuberculosis, Japanese encephalitis, and
bacterial meningo-encephalitis
Head injury
Chronic lead exposure
Severe and prolonged malnutrition
Gross understimulation and experiential deprivation

COURSE OF MR
Intelligence is normally distributed in the population with a skew to the left and a hump in the lower ranges. This
means that different clinical degrees of MR blend with each other imperceptibly. Also, there is a wide inter-
individual and intra-individual variation in skill levels within each category. ICD-10 provides a general
description of these categories.[12]

Clinicians tend to underestimate the future attainments of children who present with MR. Table 2 shows the
adult attainments of children who present with different degrees of MR (summarized from several sources).
From the table, it is clear that even children with moderate retardation are capable of acquiring a variety of skills
and competencies, given right kind of inputs and opportunities. It is possible that a proportion of infants with
mild developmental delay may turn out to normal intelligence in adulthood. [13]

Table 2: Adult attainments in different degrees of MR

DEGREE OF MR with IQ range as per ADULT ATTAINMENT
ICD 10
Mild (50-79) Literacy ++
Self-help skills++
Good speech ++
Semi-skilled work +

Moderate (35-49) Literacy +

Self-help skills ++
Domestic speech+
Unskilled work with or without supervision
+

Severe (20-34) Assisted self-help skills+

Minimum speech+
Assisted household chores +

Profound (<20) Speech+/-

Self-help skills +/-

Note: ++ means definitely attainable: + means attainable: +/- means sometimes

attainable;

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CLINICALPRESENTATION
Delayed milestones of development, poor ability to learn new things, poor speech and comprehension,
poor self-help skills, and poor school performance, poor memory are the common presenting common
complaints. Other reasons are for behavior problems such as restlessness, poor concentration,
impulsivity, self-injurious behavior, or sleep / appetite disturbances. Recent onset behavior change in a
child already having delay is another important presenting complaint, and needs careful evaluation.
Sometimes parents bring them primarily for assessment of intellectual abilities, certification, etc.
ASSOCIATED (COMORBID) PSYCHIATRIC PROBLEMS
There is a vast body of literature suggests that MR at all ages is 3-5 times more frequently associated with
psychiatric disorder than in general population, with a prevalence of around 40%. [14, 15]

Several studies from India have confirmed this excess prevalence, and also have reported on pattern of
psychiatric comorbidity. [16-19]

There are many reasons for this excess prevalence:

(i) impairment in CNS development contributes not only to MR but also behavioral / emotional
dysregulation,
(ii) associated problems such as seizures and speech problems makes them predisposed,
(iii) limited intellectual potential increases vulnerability to environmental influences and stresses,
and
(iv) they are more likely to experience adverse conditions of upbringing such as understimulation,
overprotection and inconsistent disciplining.
In a given child, any of these factors, either alone or in combination, may contribute to the development of
psychiatric disorder.
Full range of psychiatric disorders has been described in children and adults with MR. Both externalizing
[20,21]

disorders such as oppositional defiant disorder and ADHD and internalizing disorders such as social anxiety
and specific phobias are known to occur. Rates ofADHD in community samples of children with MR have been
found to vary from 7% to 15%. Prevalence of schizophrenia in adults has been found to 3 times more common
than in individuals with normal intelligence. Affective disorders in all forms do occur in persons with mental
[22]

retardation. Atypical presentations of bipolar disorders such as mixed episodes and rapid / continuous cycling
have been more often reported. [23]

By and large, the same criteria that apply to individuals without MR are being followed for diagnosing
comorbid disorders in MR, although there have been some attempts at developing alternate criteria.
Psychiatric disorders in persons with MR are commonly under-diagnosed or misdiagnosed. Several factors
might be responsible:

· An erroneous belief that psychiatric disorders can’t be diagnosed when there is MR is a common
reason.

· diagnostic masking – manifestations of the disorder are modified or masked by the presence of MR,
especially in more severe forms of MR. [24]

· clinicians may narrow their focus on only identifying disruptive behaviors and implement only
symptomatic treatment, thereby neglecting to evaluate the global picture.

· “Diagnostic overshadowing”, or the tendency to write-off symptoms as merely expressions of MR

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 and not psychiatric disorder will also lead to under-diagnosis. [25]

· Persons with MR may have difficulty responding to standard diagnostic interview questions.
It is desirable that clinicians attempt a formal diagnosis of psychiatric disorder rather than providing “behavior
disorder” or “challenging behavior” label. Carefully studying behavioral profile may point to a particular
psychiatric disorder. However, a proportion of children presenting with behavioral problems such as
[26]

aggression, impulsivity, irritability stereotypies and self-injurious behavior may defy classification and may
get a label of behavior disorder NOS.
There has also been growing recognition that certain behavior patterns tend to be more often associated with
specific etiologic syndromes (behavioral phenotypes). Some Examples are severe self-injury in Lesch
[27]

Nyhan syndrome, obesity and OCD in Prader Willi syndrome, PDD and ADHD in Fragile X syndrome, and
psychotic disorders in velo-cardio-facial syndrome
Diagnosis of comorbid psychiatric disorder: Recent onset changes in behavior, overall functioning, sleep
and appetite patterns, often point towards a comorbid psychiatric disorder. During clinical evaluation, a
greater reliance on onset and chronological evolution of symptoms, intensity, frequency, context of occurrence
of symptoms, precipitating & relieving factors elicited through careful interviewing of parents and caregivers
will help in uncovering the psychopathology. School report is a valuable additional source of additional
information. A period of behavioral observation rather than just traditional psychiatric interview will often help
the clinician to decide on the presence and type of psychiatric disorder.
Recently, a few standardized instruments have been developed to screen for psychiatric and behavioral
disorders such as Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS-ADD), [28]

Reiss Screen for Maladaptive Behavior, Psychopathology Inventory For Mentally Retarded Adults
[29]

(PIMRA),[30] and Developmental Behavior Checklist (DBC). [31]

Table 3 lists common comorbid psychiatric disorders in children with MR.

TABLE 3: COMMON COMORBID PSYCHIATRIC DISORDERS IN CHILDREN WITH MR
• ADHD, ODD, CD restricted to home situation
• PDD, stereotyped movement disorder
• Anxiety and depressive disorders
• Disorders of sleeping & feeding
• Non-syndromal: restlessness, self-injurious behaviors, aggression, stereotypies, impulsivity, pica
ASSOCIATED PHYSICALPROBLEMS
MR is often accompanied by medical disorders and disabilities, both neurological and non-neurological (Table
4). These will require attention in overall management. Structures of ectodermal origin, from which brain also
develops, are more likely to be affected. Some conditions giving rise to MR are more commonly associated
with certain disorder, for e.g., Down syndrome with congenital heart disease and Azheimer’s dementia,
congenital CMV infection with hearing impairment, kernicterus with dyskinetic CP, tuberous sclerosis with
epilepsy, and Laurence Moon Bardet Biedl syndrome with retinitis pigmentosa. Seizure disorder has been
reported in 15-30% of individuals with MR of all degrees. This prevalence increases to around 50% of
[32]

individuals with severe MR. Epileptic encephalopathies such as West syndrome and Lennox Gestaut syndrome
are almost invariably associated with MR.
A small proportion of children with MR have multiple disabilities, for instance, a child with moderate MR,
cerebral palsy and hearing impairment. Such children need extensive evaluation and intervention.

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 TABLE 4: MEDICALDISORDERSAND DISABILITIESASSOCIATED WITH MR
Seizure disorder
Cerebral palsy
Visual impairment
Hearing impairment
Congenital heart disease
Cleft lip and cleft palate
Orthopedic handicaps (CTEV, congenital dislocation of hip joint)
Vitamin and mineral deficiencies
Recurrent infections
Feeding skills disorder
CLINICALEVALUATION IN MR
A thorough clinical evaluation is the basis for optimum management. There are a number of questions that the
clinician needs to answer through a good clinical evaluation, as laid in Table 5. Attempts need be made not only
to establish whether MR is present or not, but also to ascertain the degree, cause, associated problems, and
family and psychosocial factors.
It is important to make efforts to identify the causative factors, for a number of reasons: some of them such as
hypothyroidism are amenable for treatment; for genetic counseling purpose, and for prognostication. In
addition, parents often want to know the cause even if it is not treatable, as it gives them a sense of cognitive
control over the situation. They may also harbor some misconceptions about the causation, which can be
addressed through counseling.
TABLE 5: CLINICALQUESTIONS TO GUIDE EVALUATION
What precipitated the consultation?
Is there significant developmental delay
Is it global (affecting all areas of development, viz., motor, cognitive, social, and language) or restricted (for
instance only motor or speech)
How severe is the delay
What is the cause/s?Is there a treatable cause
What is the recurrence risk
Are there associated medical problems
Are there associated behavioral or psychiatric problems
How much do parents know about the condition?What are their expectations?What are the difficulties faced
by them?
Are there any other issues?
What and how to tell parents
The steps in clinical evaluation are depicted in Table 6, and described bewlow:
TABLE 6: DIMENSIONS OF CLINICALEVALUATION IN MR
Detailed history
Thorough physical examination
Psychological testing
Physical investigations
Comprehensive diagnosis

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HISTORICALDETAILS :
A standard format for eliciting and recording the history is given below in Table 7. Information from Multiple
sources - parents, other caregivers, previous consultation notes, school report, and from the child himself or
herself whenever possible enhances the reliability of the information.
Table 7 :Ascheme for history-taking in MR

· Complaints with duration, and evolution of current problems

· Family history: with 3 generation genetic diagram, family history of MR, epilepsy, other
developmental problems, early deaths, etc, family background, current living arrangements, details
stress, coping and adaptation by the family

· Personal history: pre-, peri-, and postnatal details, developmental milestones, & developmental
course or trajectory (onset of delay, dates of acquisition of key milestones, delay in all areas or not,
severity of delay, schooling history, and menstrual history)

· Medical history: seizures, feeding problems, recurrent infections, etc

· Psychiatric history: details of onset, evolution and current status of behavioral and other
psychopathological disturbances

· Treatment history: past efforts by the family in seeking help, nature, and response to past treatment,
and current medication

· Current developmental attainments: in motor, cognitive, language and social areas, parents’
estimation of mental age of the child
PHYSICALEXAMINATION :
Ideally a head-to-toe examination of all the organ systems needs to be carried out. Some of essential things to
note are vision, hearing, locomotion, and any major congenital anomalies. Special attention should be paid to
neurological examination. It is also desirable to systematically look for and document any minor congenital
anomalies (MCA’s) (Table 8). Presence of 4 or more MCA’s is a pointer to a prenatal etiology. This book
[33]

(Smith’s Recognizable Patterns of Human Malformation) is an excellent source for the list of syndromes and
other related issues.
TABLE 8: SOME COMMON MCA’SAND OTHER FINDINGS ON PHYSICALEXAMINATION
Facial appearance: typical facies ( mongoloid, coarse), elongated, triangular
Height: short stature, tall stature, increased arm span, gigantism
Weight: obesity, emaciation
Head circumference: microcephaly, macrocephaly
Shape of skull: brachycephaly, scaphocephaly, trigonocephaly, oxycephaly, plagiocephaly
Ears: low set, small, large, malformed, protruding, lop, posteriorly rotated, pre-auricular tags, cup-shaped
Skin: dry and coarse, café-au-lait spots, abnormal pigmentation, hemangioma, ichthyosis, eczema, absence of
sweating
Nose: depressed nasal bridge, short and stubby, beak shaped, bulbous tip, flaring or hypoplastic nostrils,
anteverted nares,
Vision: amblyopia, refractive error, nyctalopia
Hearing: partial or complete loss
Neck: short, webbed, torticollis
(49)
Eyes: deeply set, proptosis, microphthalmia, upslanting / downslanting eyes, hypertelorism, epicanthal folds,
strabismus, nystagmau, ptosis, bushy eyebrows, synophrys, microcornae, corneal clouding, K-F ring,
cataracts, coloboma of iris, blue sclera, telangiectasia
Palate: high arched, shallow, clefting, bifid uvula
Hair: hirsutism, light colored, double whorl on scalp, easily breakable,
Other facial features: long / absent philtrum, midfacial hypoplasia, micrognathia, sloping forehead,
Hands: simian crease, Sidney line, spade shaped
Fingers: clinodactyly, camptodacyly, arachnodactyly, short little finger, syndactyly, polydactyly, broad thumb
Chest: pectus excavatum, pectus carinatum, nipple anomalies, gynaecomastia
Abdomen: protuberant, umbilical hernia, hepato-splenomegaly, inguinal hernia
Spine: kyphosis, scoliosis, spina bifida
External genitalia: hypogenitalism, macro-orchidism, undescended testis, ambiguous genitalia, hypospadias,
absent secondary sexual charactersitcs, shawl scrotum
Feet: pes planus, pes cavus, valgus / varus anomaly, broad hallux, increased distance between 1 & 2 toe
st nd

Skeletal: exostoses, increase carrying angle, joint hypermobilit

Anumber of syndromes can be diagnosed based on clinical features (table 9)
Table 9: common clinically recognizable syndrome encountered in india
Syndrome Key features
Down syndrome Typical facies, short stature, medial
slanting of eyes, clinodactyly, simian
crease, cup-shape ears
Fragile X syndrome Elongated, triangular face, protruding
/prominent ears, macro-orchidism in post-
pubertal boys
Rett syndrome Normal development till around 1 year of
age in a girl child followed by plateauing
and regression, loss of hand functions, mid-
line hand stereotypies
De Lange syndrome Hirsutism, long eye-lashes, synophrys,
bushy eye brows, microcephaly,
Prader Willi syndrome Obesity, hypogenitalism,
Tuberous sclerosis Sebaceous adenomas, ash-leaf spots,
shagreen patches, seizures
Congenital hypothyroidism Lethargy, growth failure, coarse and dry
skin, constipation, feeding problems,
protuberant abdomen, bradycardia
Mucopolysaccharidoses Typical facies, coarse skin, skeletal
anomalies, macrocephaly
Homocystinuria Marfanoid features,
Phenylketonuria Light colored hair, abnormal smell of
urine, microcephaly, seizures
Autosomal recessive microcephaly Severe congenital microcephaly with only
mild to moderate MR, no other anomalies
Rubinstein Taybi syndrome Prominent beak-shaped nose, broad thumb
and hallux

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PSYCHIATRIC EXAMINATIONAND BEHAVIORALOBSERVATION:
This starts from the moment the child enters the consultation room. Equal attention need to be paid to
behavioral observation, parental reports, as well as to verbal interview in arriving at conclusions. In other words
this involves continuum of history-observation-interviewing / MSE. This calls for adequate clinical skills of
observation, prioritization, flexibility in conducting the interview, communication, and adjusting the style and
content of interviewing depending on the situation. If necessary, child and parents could be interviewed
separately. Playroom observation and longer periods of observation for a functional analysis (Antecedent-
Behavior-Consequences or ABC analysis) of symptoms is sometimes required. Table 10 provides a scheme for
clinical interview and observation.
TABLE 10:ANAPPROACH TO CLINICALINTERVIEW IN MR

Setting for interview:

Toys, Books, Pictures, Paper, pencil
Couch, child friendly furniture
Safe from danger
Space to move around
Process of Interviewing
• Building rapport
Make the kid and parents comfortable: child on mother’s lap or in separate chair or to let the child move
around
Learn the pet name, get the exact age
Be ready to get up from seat and move around to interact with the child to engage in some activity
Offer toys, books, etc and quickly find out something the child is able to do; appreciate and comment on it to
the parents
• Build partnership with parents from the outset
Value their opinions, and impressions, and efforts;
Appreciate parents for the right things they have done
• Verbal interviewing: depends on language development and conversational skills:
Simple, structured, and brief;
Use clear & concrete questions
Avoid leading questions
Use parents when necessary for interviewing
•Clinical observation (common abnormalities in brackets)
Basics: Vision, hearing, locomotion, physical health
Response to interview situation: (excited, fearful and tense, shy, inhibited, guarded, uncooperative, defiant)
Alertness: (over-aroused, withdrawn)
Attachment to parents and response to separation: (clinging, wanting to be carried all the time, indifferent to
separaton)
Sociability: check for Social orientation, approachability, Social responsiveness, ETE contact, reciprocity or
response to overtures (solitary, withdrawn, poor ETEC, over-socialization)
Motor Activity level: Fidgetiness, restlessness, hyperactivity; lethargy
Course of motor behaviors during interview, response to firm instructions: (quiet initially, but later restless,
unresponsive to firm instructions)
Impulse control: (snatching, spilling, falling, bumping, climbing, interfering, temper tanrums; aggressive acts
such as biting, throwing, beating, pulling hair, slapping)
Attention, concentration: goal directedness, task completion, distractibility (short attention span, jumping
from one activity to another, easily distracted)
Speech, language & communication: check for verbal/non-verbal comprehension & Expression, vocabulary,
articulation, and flow
Mood: (inhibited, excessively cheerful, whining and crying, irritable,)
Play behavior
Other inappropriate behaviors: (stereotypies, Self-Injurious Behavior),
• Impressions on current developmental attainment:
hand functions, self-help skills, use of objects, general information, capacity for new learning, rational
thinking, pre-academic & academic skills
" Parent child interactions
Quality of engagement with child
Communication patterns
Degree and quality of control over the child
Response to good and bad behaviors
" Interaction between parents

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INVESTIGATIONS
Given the fact that MR can result from a variety of insults to brain development, a range of physical
investigations may be required to ascertain the cause of MR, as well as to delineate the associated problems
such as hearing / visual impairment. Table 11 lists potentially useful investigations in MR.
In a given child, investigations have to be decided based on the clinical picture, the need for genetic counseling,
treatability of the conditions likely to be detected, diagnostic yield of a given investigation, cost of
investigation, economic status of the family, and the parents’ need to know the cause. Ideally, investigations
should be planned after a detailed discussion with parents about all these issues. American Academy of
Neurology provides useful guidelines in this regard. [3]

TABLE 11: PHYSICALINVESTIGATIONS IN MR

Test Examples of Conditions detected
Urine screen for abnormal metabolites Phenyketonuria, homocysteinuria,
galactosemia, MPS
Thyroid function test Hypothyroidism
Advanced metabolic tests (Gas Wide range of neuro-metaboloic disorders
chromatographic Mass Spectroscopyc such as fatty acid oxidation disorders,
(GCMS), tandem mass spectroscopy aminiacidopathies, urea cycle disorders and
(TMS) organic acidurias
Enzyme studies Tay-Sach disease, meatachromatic
leukodystrophy
Karyotyping Down syndrome, other chromosomal
disorders
FISH Prader Willi syndrome, William syndrome,
Sub-telomeric deletions
Molecular genetics Fragile X syndrome (FMR1 mutation), Rett
syndrome (MECP2 mutation),
Brain imaging Tuberous sclerosis, lissencepahly,
EEG Epileptic encephalopathies such as West
syndrome
Hearing evaluation (BAER) Sensory-neural hearing impairment
Visual evaluation Wilson dis ease, cataract, Optic atrophy,
cortical blindness, refractive error
Blood group of child and parents Rh iso-immunization
Immunologic tests (Ig M antibodies) TORCH infections

PSYCHOLOGICALTESTING:
These are required for several reasons. It is especially useful in children who present with mild delays in
development, sub-average or borderline intellectual functions or with learning difficulties (slow learners),
when a systematic assessment of their different cognitive abilities helps in clarifying the diagnosis. Another
important reason is for mapping out the child’s assets and liabilities so that an individualized training program
can be formulated. Estimating the IQ of the child is also commonly required for administrative reasons such as
certification. Commonly used tests in India are Vineland Social Maturity Scale (VSMS), Binet Kamat Test
(BKT), Malin’s Intelligence Scale for Indian Children (MISIC), WISC, and Bhatia Battery. An Indian
adaptation of Bailey’s Scale for infants is also available (DASI). Checklists such as Portage checklist, BASIC
MR from NIMH, Secunderabad, DDVP, Trivandrum Developmental Checklist are also useful for planning

(52)
targeted intervention.
Clinician has the task of synthesizing the information from historical data from many sources, examination and
observation to arrive at a comprehensive diagnosis. Amodified Rutter’s multi-axial system for comprehensive
diagnosis, as in Table 12 has been found to useful in MR, and helps in planning an individualized intervention
plan.
TABLE 12 : ASCHEME FOR COMPREHENSIVE DIAGNOSIS IN MR
(EXAMPLES IN BRACKETS)
I: Presence and degree of MR (mild MR)
II: Etiologic / syndromal diagnosis (fragile X syndrome)
III: Associated medical problems (epilepsy)
IV: Associated psychiatric problems (ADHD)
V: Family & psycho-social axis (poor awareness, high stress levels, overexpectation)
DIAGNOSISAND DIFFERENTIALDIAGNOSIS
· Moderate or severe MR at any age can be identified without much difficulty, based on elicitation of
developmentalmilestones and current functioning in different areas.
· A useful technique to assign degree of MR is to make an estimate of mental age of the child based on the
current abilities of the child, divide it by chronological age, and multiply by 100. This calls for a good
understanding of developmental milestones by the clinician. Parents can often give a fairly accurate
estimate of the child’s mental age.
· Careful attention needs to be paid when there is milder forms of intellectual deficit before labeling the child
as having MR. Diagnosis of MR should only be considered when there is significant, global delay or
deficits in current developmental attainments in all areas of development. Standardized Psychological
testing is desirable in this group of children
· The label of MR is better avoided in infants unless there is severe global delay or a DQ of less than 50.
· Other disorders and disabilities such as cerebral palsy without MR, pervasive developmental disorder
without MR, specific leaning disability or specific delays in development of scholastic skills (dyslexia’s),
Specific delay of speech and language development, severe emotional disorder and visual and hearing
impairment may be erroneously labeled as MR. Careful clinical evaluation especially focusing on the
current abilities in different areas of development, viz., motor, cognitive, social and language,
supplemented by psychological testing sorts out the diagnosis.
MANAGEMENT OF MR – PHILOSOPHIESANDAPPROACHES
Over the last 2-3 decades, the following philosophies and approaches have emerged for the care of individuals
with MR:
Normalization principle: the central notion of this principle is “to make available to persons with MR patterns
and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of
society”. It asserts their right to live with respect and dignity, exercise their choices, and the responsibility of
[34]

the society to create a favorable environment for their development and well-being.
Home-based family care approach with parents as partners in care; this developed in contrast to the
widespread institutionalization that was practiced in Western world. The focus, from this perspective, is to
actively collaborate with families in building and providing services, to strengthen and empower parents so that
these individuals can be provided optimum care at home.
Early detection and intervention: this applies to children who already have significant developmental delay,
as well as to children who are at risk for developing MR (prematurity, low birth weight, neonatal hypoxic-

(53)
ischemic encephalopathy, neonatal hyperbilirubinemia, neonatal septicemia etc). Support for early
intervention has come from a number of neurophysiological studies in animals, which have consistently
demonstrated the vital role of experience and stimulation in sensory-motor, cognitive, and behavioral
development and the adverse influences of experiential deprivation. The corresponding changes in the
neuronal structure such as increased dendritic branching and inter-neuronal connections have been
documented. [35]

Early intervention studies in humans have also demonstrated the efficacy of this approach in fostering
development of babies with developmental delay. [36-38]

There have been several reports of early intervention in India, with some of them indicating positive results. [39-43]

The objectives of early intervention include (i) creating an optimal environment for best possible development
of the child, (ii) to prevent the occurrence of secondary disabilities (reversible and preventable disturbances
that result from sub-optimal care) and (ii) to equip parents with necessary skills and competencies to foster such
development.
Children with developmental delay are prone for understimulation, thereby further impeding their process of
development. Techniques of early intervention include sensory-motor stimulation, contingent-responsive
stimulation, environmental enrichment, establishment of a mutually enjoyable and rewarding caregiver –
infant interactions (parent-infant interaction intervention or transactional intervention), and behavior
modification. [44]

Table 13 lists some of the common avoidable errors by clinicians when dealing with MR.
Table 13: Common errors by clinicians
Negative attitude and therapeutic nihilism towards MR (‘nothing can be done’)
Not treating the individuals with respect and dignity
Conveying implicitly or explicitly a sense of pessimism
Lack of adequate knowledge base
Cursory and incomplete evaluation
Missing or misdiagnosing comorbid psychiatric and medical conditions
Under-estimation of future attainments
Not providing treatment options
Giving false reassurances (he will be normal when he grows up)
SPECIFIC INTERVENTIONS IN MR
By its very nature, MR requires multi-sectoral (health, education, social welfare, community, legislation /
policy making) and multidisciplinary (psychiatrists, other medical specialists, psychologists, social workers,
speech pathologists, physio-occupational therapists, special educators, geneticists etc) approach to its
management. Apart from their primary role as clinicians, psychiatrists also need to take initiative in becoming
part of the networks, building networks, and even establishing services. Interaction, liaison and collaboration
with other professionals such as psychologists, pediatricians, teachers, and rehabilitation professionals are
very often required. For example, while referring a child to an NGO, which is providing service, the
psychiatrist could write a referral note giving the details of clinical evaluation and the reason for referral.
Psychiatrists are often called on by Governmental Depts. (Disabled welfare, woman and child development
etc) and NGO’s to provide assistance, and guidance in their programs and related service / training activities.
Psychiatrists also have a role in assisting the judiciary in different capacities. Psychiatrists could also play a role
in advocacy for strengthening of the services.

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RECOMMENDATIONS ON THE MANAGEMENT OF MR.
It is desirable to carry out the following interventions in the management of a child with MR. (These
interventions are described in detail subsequently).
· Parent Counseling
· Treatment of the underlying disorder wherever possible
· Early intervention in children who are at risk and those who already have developmental delay
· Management comorbid psychiatric and medical problems
· Individualized training program for the child based on assets and liabilities in the child, family and
environment
· Parent training for home-based management
· Referrals for special education, physio-occupational therapy, speech therapy, vocational training, and
parent organizations
· Discussion about parental concerns such as social security, guardianship, menarche, marriage, etc and
providing appropriate guidance
· Helping parents to access social welfare benefits etc
· Checking about the need for genetic counseling and offering appropriate help
Table 14: Overview of individual, family and community level interventions
• Individual
– Medical interventions
– Sensory-motor & cognitive stimulation
– Speech and language therapy
– Physiotherapy and occupational therapy
– Self-help and social skills training
– Education – inclusion in normal stream or special education
– Pre-vocational training
– Vocational training and job placement
• Family
– Parent counseling:Alleviation of stress & enhancing coping & adaptation
– Parent training for home based intervention
– Family networking; Parent associations
Helping families to access community and governmental resources and benefits

• Community
Legislations, policies and programs
Social security benefits to individuals and families
CBR program
Medical interventions
These are summarized in table 15. There is no evidence that Nootropics, or drugs that are supposed to enhance
cognition are effective in MR. Hence, it is preferable to avoid prescribing this group of medication in MR.
Table 15: Medical interventions in MR
• Diagnosis and treatment of treatable underlying disorders
– E.g., Hypothyroidism, PKU
• Diagnosis and treatment of comorbid medical & psychiatric problems

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 – E.g., Epilepsy, hearing impairment,ADHD, Undernutrition, feeding and sleeping problems
• Genetic counseling
Genetic counseling is highly skilled medical intervention, and often requires a close collaboration between
clinicians, geneticists and other specialists. The commonest situation when genetic counseling is required in
MR is when parents have one child with MR and would like to know the risk of recurrence. Experience of
genetic counseling in India has been described in detail elsewhere. [45, 46]

Management of comorbid psychiatric and behavioral disorders

This is an important area of intervention, given the fact that upto 40 % of children with MR have a diagnosable
psychiatric disorder. Very often this proves to be a greater source of stress for families than MR per se. Also
these children are likely to be rejected in social and educational settings. Management needs to be muti-modal,
with both pharmacological and psycho-social interventions.
Pharmacotherpy : There have been a number of studies on the use of psychotropic medication in children and
adults with MR, though majority of them tend to be open trials, case reports, or controlled studies with small
samples. These studies have focused on utility of particular medications in discrete disorders (for instance,
methylphenidate in ADHD, or atypical anti-psychotics for schizophrenia), or the efficacy of particular
psychotropic agent in the symptomatic treatment for problematic or challenging behaviors (for instance
risperidone for aggression, impulsivity and stereotypies).
The available data suggests that persons with MR respond to various psychotropic medications in ways similar
to the typically developing population. For instance, there are several studies that have established the efficacy
of methyphenidate in ADHD comorbid with MR at the dose of 0.3 to 0.6 mg / kg twice daily. However, rates of
response tend to be poorer and the occurrence of side effects tends to be more frequent In view of this, lower
initial doses, small increments while increasing the dose, and careful monitoring of response and adverse
effects are required. Studies have shown the efficacy of risperidone in aggression and stereotypies, clonidine
[4,5]

in hyperactivity and impulsivity (especially in the presence of seizures as clonidine has no effect on seizure
threshold, and SSRI’s in dysphoria, SIB and stereotypies.
[47]

Pharmacotherapy needs to be combined with psycho-social forms of treatment to obtain optimum and
sustained improvement. These include parent counseling, parent training, behavior modification, skills
training, and environmental changes. Individual counseling with appropriate modifications in language and
approach could be attempted wherever it is necessary and feasible. [6]

It is common to see oppositional defiant behaviors, tantrums, and other disruptive behaviors in these children
mainly as a learnt behavior in response to faulty parent child relationships and child-rearing practices. These
can be effectively tackled through parent counseling, behavior modification, and parent management training.
In those with severe problems, a brief period of inpatient evaluation and management might be required.
Psycho-social management of MR
Individual interventions
This depends on the child’s age, degree of MR, and the assets and liabilities in the child. In younger children, the
focus is on sensory-motor / cognitive stimulation, physio-occupational therapy, and speech-language therapy.
Table 16 lists some of the techniques and approaches to infant stimulation.

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Table 16: some techniques early intervention and stimulation
Area Approach / examples
Establish rewarding MII Draw child’s attention through eye-to-eye contact, touch,
vocalization, facial movement, toys etc
Introduce an activity and vary stimulus characteristics till
child starts reciprocating by smile, motor activity,
excitement, vocalization etc
Notice these signals, respond back by animatedly
repeating the activity and thereby establish interaction
cycle
Move to another interaction cycle later
Integrate these cycles into daily routines such as bathing,
and dressing,
Multi-sensory stimulation Touching, Tickling, stroking, gentle rubbing, gentle
(covering all sensory modalities) bouncing, gentle to-and-fro rocking with a tune, swinging,
making purring sound on abdomen, gentle massaging
Showing colorful cloth pieces, ribbons, balloons, toys;
Playing tunes, hums, parallel vocalization, gentle
clapping; sounds of bangles, bells, animals, talking,
building simple conversation around daily routines
Getting the child to experience different tastes and odors
Gross motor Prone positioning, supported sitting, crawling, supported
walking, passive and active range-of-motion exercises of
all joints
Fine motor Hand functions: grasping, reaching, holding, transferring,
giving, pincer grasp, joining, pulling, pushing, beading
Early social Imitating skills, pointing, joint attention, showing body
parts
Mother-infant games: peek-a-boo and its cultural variants,
other culturally prevalent mother-infant games
Early Cognitive Sorting, classifying, arranging, recognizing pictures,
matching
Concept development Size, shape, consistency, time, space (distance, direction
etc), color
Older children require self-help / social skills training, education and pre-vocational training. Behavior
modification techniques have been found to be extremely effective for training. Tables17 and 18 briefly
describe the common techniques to build new skills and to eliminate inappropriate / excess behaviors.
Table 17: Behavior modification techniques for building new skills
Technique Brief definition
Goal specification Specified description of desired behavior to be learnt,
based on current skills level and needs
Task analysis Breaking activity into sequential steps; number of steps
depends on child’s learning capacity
Rewarding Pleasant event following a given behavior; can be
material (food) or social (praise, attention); should be
immediate, consistent, appropriate and contingent
Modeling Showing how, or demonstrating, so that the child imitate
and learn
Shaping Successive approximation to final task; teaching the
simplified version of the total task and gradually
increasing the complexity
Chaining Breaking the task into small steps and teaching one after
another
Back chaining Teaching the last step first and then going backwards
Forward chaining Teaching the first step first
Prompting Assisting the child verbally or physically (hand over
hand, gesturing, pointing) and gradually fading the
assistance

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 Table 18: Behavior modification tec hniques for eliminating odd or problem
behaviors
Technique Brief description
Disregarding Ignoring the behavior (as if it is not occurring at all) but
continuing the attention to child
Ignoring Ignoring both the child and behavior
Redirecting Catching the child just as an odd behavior is beginning
and guiding to child towards an appropriate behavior
Limit-setting Clearly communicating what is acceptable and
unacceptable behaviors to child and enforcing these
Blocking Preventing the behavior from being completed (example
aggression).
Gradual guidance Waqiting for the child to stop resisting physically and
thenm guiding towards completion
Time-out (from positive reinforcement) Removal of attention and reinforcement contingent upon
occurrence of a specified maladaptive / undesirable
behavior
Differential reinforcement of other behavior Noticing and rewarding the child while he or she shows
desirable behavior or when undesirable behavior is absent
(catching the child being good and praising)
Over-correction Child has to not only restore but do something more to set
right whatever damage or disturbance that has occurred as
a result of undesirable behavior
Response cost Withholding a privilege that child enjoys contingent upon
the occurrence of undesirable behavior

Family-focused intervention in MR
In many ways, MR is as much a problem of the family as that of individuals with MR.. Keeping this in mind
there has been a lot of emphasis in the recent decades in providing family-focused services and interventions.
Major objectives of these interventions are (i) to alleviate stress and to enhance coping and empowerment in
families (i) to equip parents with skills and competencies in training their affected child at home itself. It has
been repeatedly demonstrated that parents can be effectively trained to implement developmental interventions
at home itself. [48]

In India, several models and approaches have been attempted towards this goal of family empowerment. Two [49-52]

essential components of family-focused interventions are parent counseling and parent training, which are
described below.
Parent counseling
Parents face enormous stress in caring for their affected child. In the initial stages, they may go through the
highly distressing and confusing emotions of Shock, disbelief, disappointment, anger, guilt, misery,
helplessness, and worries about the future of the child. Later the nature of stress can span over several aspects of
family life such as daily care demands, emotional distress (such as maternal depression), interpersonal
difficulties (such as parental discord), financial problems and adverse social consequences (such as social
isolation and stigmatization). [53,54]

Research also has shown that families make active efforts to cope with these stressors. Table 19 lists some of
[55]

the successful coping strategies adopted by families.

Table 19 : Effective coping strategies and resources by families
Adequate awareness, acceptance, and appropriate expectations
Favorable attitude and rearing practices
Believing that they can improve the child’s functioning (“change agents”)
Learning about the ways by which they can improve the child
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Utilizing and Building social support
Finding about and accessing resources
Planning for things that are possible but “taking things as they come”
Taking pleasure in child’s achievements, however small they are
Giving and receiving love from the child
Keeping their normal life intact,
Working together as a family to solve problems
Joining parent associations
Maintaining family health and harmony
Religious and moral belief
Successful coping and adaptation of families depends a lot on their initial encounters with the professionals. [56]

Hence, psychiatrists need to pay careful attention while counseling parents. Table 20 lists some of the desirable
counselor characteristics.
Table 20: Counselor characteristics
• Genuine concern for individual with MR and their families
• Ability to generate hope and optimism
• Sufficient basic knowledge about various aspects of MR
• Non-judgmental attitude
Skills of listening, exploring, communicating
• Dynamism or action orientation – showing things, rather than just talking
• Sensitivity and perceptiveness to counseling processes – to shifts and changes in parents’feelings, thinking
patterns, and responses
• Good working relationship with other professionals and agencies
• Recognition of one’s own limitations and being honest
The different stages in parent counseling, the tasks for the counselor, and approaches have been described
elsewhere, and summarized in table 21. In brief, parent counseling needs to focus on disclosing the diagnosis
[57]

in a psychologically proper, understandable manner, supporting parents by allowing ventilation, providing

factual information at a rate that families can understand, clearing any misconceptions they may have about the
condition, instilling realistic hope, giving practical solutions to enhance coping, discussing management
options, making appropriate referrals, and equipping them with at least some skills for home-based training of
the child. It is common to come across maladaptive rearing practices in these families in the form of
understimulation, overprotection, and inconsistent disciplining. These, when present, also need to be
adequately tackled though counseling.
Group approaches for parent counseling and training have laso been described in India, with encouraging
results. These are meant for educating, orienting, providing emotional support for parents and caregivers
[52,58,59]

especially in the initial phases of contact, and training. Innovative variations of this basic theme such as parent
workshops and caregiver-training workshops have also been practiced.

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 Table 21: Steps in parent counseling
stage Methods / approaches
Develop working relationship Treat them with dignity
Get to know them well
Show genuine interest and adequate time
Empathize with their problems
Appreciate their efforts
Explore Family situation
Physical and mental health of family members
Reactions, stressors, awareness, attitudes etc
Social support
Provide meaningful information Nature of the problem
Clear misconceptions
Nature of interventions that work - changing parents’
mindset from Medical model to developmental model
Available resources
Provide emotional support Allow ventilation
Reassure and provide realistic hope
Enhance coping Give practical suggestions about day-to-day management
and dealing with stressful situations
Identify and correct and maladaptive parenting such as
overprotection, rejection, and inconsistent disciplining
Impart training skills Skills transfer for home-based training program –
stimulation, self-kelp skills training, etc

Table 22 lays down some of the messages that are to be communicated to parents during counseling
Table 22: some messages to parents during counseling

" Look at abilities rather than deficits in the child (what the child is able to do and what
can be taught, rather than what he or she is not able to do)
" Notice successes and praise them, however small these may be.
" Try to learn the techniques of training and practice them.
" Remember that they are slow in learning but they can still be taught with patience,
persistence, and the correct approach.
" Find out about services that are available and utilize them.
" There is no need to feel ashamed about having a retarded child.
" There is no need to blame oneself or other family members for the child’ s condition.
" Do not overprotect the child; encourage them as far as possible to stand on their own
feet.
" Do not waste money unnecessarily on dubious treatments, which have not been
proven.
" Make contact with other parents and join parent organizations for mutual support
" Keep the normal life intact, and work together as a family to solve problems
" Do not cut off your relationships with relatives and friends; keep your social life
intact
" Try to arrange daily routines such that everybody gets some time off from the child

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Parent training:
Studies from abroad have shown that parents can effectively learn the techniques of intervention and training
and practice them at home to the betterment of their affected children.
[48,60]

A number of studies from India also have demonstrated the efficacy of parent training for home-based
intervention. Several packages of intervention have also been developed based on developmental,
[39,58,61]

transactional and behavioral models. The techniques of training parents include instructions,
[51,52,62]

demonstrations, educational materials, videos and manuals. Such materials developed at NIMH,
Secunderabad, and Portage Guide to Early Intervention are quite useful towards this end.
Life Cycle Issues in MR
Different stages in the life of an individual with MR throws up different challenges to families, that needs to be
adequately dealt with. Table 23 summarizes these life-cycle issues. Psychiatrists can help parents to address
these issues in the best manner possible.
Table 23: Life cycle issues in MR
Stage Issues and concerns
Infancy Survival, accepting the condition, medical
investigations & care
Later childhood Schooling decisions, tackling social
responses, behavior problems, playmates
Adolescence Sexuality, menstruation
Adulthood Vocation, marriage, offspring, parenthood,
guardianship, social security
PREVENTION OF MR
The levels of prevention as recommended by WHO provides a good framework to conceptualize prevention
(table 24). It is estimated that around 25% to 30 % of MR is potentially preventable by public health measures
such as improving the nutritional status, access to basic medical facilities, and good pre- and perinatal care.
In the recent years, there has been enormous advancesa in field of prenatal diagnosis of conditions leading to
MR. Some examples are non-invasive ‘triple test’ screening for Down syndrome, and advanced techniques of
chorionic villus biopsy for chromosomal and metabolic disorders, in addition to well-established techniques of
ultrasonogram (such as nuchal thickmess measurement at 11-14 weeks of gestation) and genetic
amniocentesis. Highly advanced technique of pre-implantation genetic diagnosis has now become available in
a few centers across the world.

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 Table 24: Levels of prevention in MR
LEVEL APPROACH EXAMPLE OF STEPS
PRIMARY PREVENTION Health promotion Health education, especially for adolescent
(preventing the occurrence of girls
retardation)
Improvement of nutritional
Status in community
Optimum health care facilities
Improvements in pre, peri and postnatal care

Specific protection Universal iodization of salt

Rubella immunization for women before
pregnancy
Folic acid administration in early pregnancy
Prevention of teratogen exposure (e.g.,
teratogenic drugs, substance abuse, toxins,
irradiation and abortifacients
Prenatal ultrasonographic screening for
certain congenital malformations and
syndromes
Genetic counseling & prenatal diagnosis
Detection and care for high-risk pregnancies
Prevention of Rh iso-immunization
Universal immunization for children
SECONDARY PREVENTION Early diagnosis and Neonatal screening for treatable disorders
(halting disease progression) treatment (hypothyroidism, phenynlketonuria,
galactosemia, homocysteinuria, congenital
hydrocephalus)
Intervention with ‘at risk’ babies
Early detection and intervention of
developmental delay
TERTIARY PREVENTION Disability limitation and Stimulation, training, and education, and
(preventing complications and rehabilitation vocational opportunities
maximization of functions)
Mainstreaming / integration
Support for families
Parental self-help groups

SOCIALAND COMMUNITY LEVELINTERVENTIONS IN MR

In India, there have a number of developments in this important area of intervention. These have been describes
inAppendix 1.
CONCLUSION
An informed, competent, and empathetic psychiatrist, who can blend both scientific and humanistic
approaches, can make all the difference to individuals with MR and their families. Such individuals and
families remain grateful forever for the care that they receive.
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Appendix 1
SOCIAL AND COMMUNITY LEVEL INTERVENTIONS IN MR
LEGISLATIONS
Government of India has enacted 2 important legislations that concern MR, as below.
Persons with Disabilities Act: Enacted in 1995, this Act envisages mandatory support for prevention, early
detection, education, employment and other facilities and social security benefits for the welfare of persons
with disabilities in general and mental retardation in particular. In addition, this Act provides for affirmative
action and non-discrimination of persons with disabilities to achieve the ultimate goal of equalization of
opportunities for these individuals. In keeping with this Act, the central government and several states in India
have begun providing many social security measures like disability pension, family pension, scholarships for
special education, travel concession, income-tax relief and special insurance policies. The percentage of
disability in MR has been specified by a Gazette notification of Govt of India(dated June 13 2001) as follows:
mild MR: 50 %, Moderate MR: 75 %, Severe MR: 90 %, and profound MR: 100 %.

National Trust for welfare of persons with autism, cerebral palsy, mental retardation and multiple
disabilitites Act 1999: This is a recent positive development in India. The spirit behind this Act is to enable and
empower these individuals to live as independenetly and as fully as possible within the community and to
actively involve the parents of individual with MR and voluntary organizations in setting up and running a
variety of services and facilities with governmental funding. It is hoped that the implementation of this act will
be the answer to an important concern of parents, viz., ‘what will happen to our child after we are no more’.
Another important aspect of this Act is that it has provisions for parents to obtain Guardianship (either partial or
complete) for their adult offspring’s with MR,
OTHER GOVERNMENTALPOLICIESAND PROGRAMS
Recently, Ministry of Social Justice and Empowerment has come out with National Policy on Disability. In
addition, there are a number of programs of Central Govt such as District Disability Rehabilitation Centers
(DDRC’s), Sarva Shiksha Abhiyan, Integrated Education for the Disabled (IED), National Program for
Rehabilitation of Persons with Disabilities (NPRPD), and National Handicapped Finance Development
Corporation that are providing services in different sectors.
National Institute for the Mentally Handicapped (NIMH, Secunderabad): Established in 1984, this apex
Governmental institution has been active in human resource development, development of models of care,
undertaking research, and documentation. It has numerous and very popular publications and videos on early
stimulation, education, training, and rehabilitation meant for a variety of professionals and parents, which can
be procured at a very reasonable price. NIMH also has published a very useful Directory of services all over

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India. It has many regional centers offering a variety of services.
Sarva Shiksha Abhiyan, a recently introduced program of Govt of India, follows the principle of inclusion
education and aims at ‘zero rejection’policy, and plans to cover children with disabilities of any kind and of any
severity aged 6-14 years. There is provision for training resource teachers who can provide extra educational
inputs in the school or home setting.
Respite and residential care facilities: the idea of respite care, viz., and institutional care for short durations of
time to help families tide over periods of crisis is catching up in India. Though, as a policy, permanent
institutionalization cannot be encouraged, there are a small proportion of individuals who either cannot be
cared for at home for a number of reasons, or because they do not have a family; they may require
institutionalization.
NGO SECTOR
NGO sector has played a pioneering role in building services, especially the special educational facilities, and
community based rehabilitation (CBR) Programs.
Another recent positive development is the formation of Parent Associations. There are now more than 100
parent associations in India and there is also a federation of parent associations (Parivaar NFPA) which has
been very active in advocacy, influencing policy development, and developing services.

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