Clinical Practice Guidelines For Assessment and Management of Intellectual Disability

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251]
CLINICAL PRACTICE GUIDELINES
Clinical Practice Guidelines for Assessment and Management of

intellectual disability
M. Thomas Kishore, Gautham Arunachal Udipi1, Shekhar P. Seshadri2
Clinical Psychology, 1Human Genetics, 2Child and Adolescent Psychiatry, National Institute of Mental Health and
Neurosciences, Bengaluru, Karnataka, India
INTRODUCTION 32/1000, depending on the case definition, methodology,

and population selected. An important point that can
Mental retardation is a developmental disorder and is be noted in the literature is that prevalence rates vary
associated with significant limitations in intellectual depending on whether deficits in either intellectual
functioning and adaptive behaviors. Currently, it is widely functioning or adaptive behavior or both are considered.
referred to as “intellectual disability (ID)” and “intellectual Although ID is recognizable in infancy or early childhood,
developmental disorders (IDDs).” In India, the Rights of it is often difficult to accurately diagnose it before 5 years
Persons with Disabilities Act (2016) has introduced the term of age. Hence, global developmental delay (GDD), which
“intellectual disability” in the place of “mental retardation.” often predicts future development of ID, is used as a
However, India being a signatory country to the World Health surrogate marker in children between the age group of
Organization (WHO), where the International Classification 3 months and 5 years. Shevell et al. (2008) defined GDD as
of Diseases, 10th revision (ICD‑10) guidelines are adopted evidence of significant delay in two or more of the following
in the clinical practice, the term “mental retardation” developmental domains: gross/fine motor, speech/language,
is still in clinical use (The WHO Working Group on the social/personal, cognition, and activities of daily living.
Classification of Intellectual Disabilities has recommended However, not all cases of GDD may have cognitive deficits
replacing the term “mental retardation” with “IDD” in or end up as ID. Males are diagnosed with ID 30% more than
ICD‑11 [Salvador‑Carulla et al., 2011]. Thus, both the terms, females, especially in the milder ID range. However, this
intellectual disability and mental retardation, are in use in difference seems to disappear when the ID is more severe.
India. Despite variation in the terminology and the differences ID is also associated with high morbidity and extreme costs
in the criteria for diagnosis (e.g., ICD‑10; Diagnostic and of care. ID can cause significant impact on the individual,
Statistical Manual of Mental Disorders, 5th Edition [DSM‑5]) families, health‑care system, and state.
and assessment of disability (as notified in the guidelines
in January 2018, which are based on the RPD Act), it is Nature and needs of the condition
commonly agreed that significant impairments in intellectual ID is a permanent condition therefore it creates special
functioning and adaptive behavior during the developmental needs for both the individual and the family across the life
period is the hallmark of the condition [Table 1]. span. The needs could be related to independent mobility,
physical care, communication needs, modified curricula, aids
It is estimated that nearly 2.5% of the global population will and appliances, occupational and vocational opportunities,
have low levels of intellectual functioning commensurate and medication if there are treatable, comorbid medical
with ID. However, a wide variation in point prevalence conditions. The special needs may necessitate support in
of ID has been reported in India, from around 1/1000 to varying degrees throughout the life span. Therefore, holistic
programs should address the lifelong needs in a step‑by‑step
Address for correspondence: Prof. Shekhar P. Seshadri,
National Institute of Mental Health and
fashion. For instance, when a child with ID is in preschool years,
Neurosciences, Bengaluru ‑ 560 029, Karnataka, India.
E‑mail: docshekharseshadri@gmail.com This is an open access journal, and articles are distributed under the terms of
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DOI:
How to cite this article: Kishore MT, Udipi GA, Seshadri SP.
Clinical practice guidelines for assessment and management
10.4103/psychiatry.IndianJPsychiatry_507_18
of intellectual disability. Indian J Psychiatry 2019;61:194-210.
S194 © 2019 Indian Journal of Psychiatry | Published by Wolters Kluwer ‑ Medknow

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Kishore, et al.: Clinical practice guidelines on intellectual disability
Table 1: Terminology and conceptual issues related to intellectual disability among different diagnostic systems
System Term Definition Intellectual functioning Adaptive behavior Developmental period
ICD‑10 a,1
Mental It is a condition of arrested Components are cognition, Not clearly defined Not explicitly defined,
retardation or incomplete development language, and motor and social It is implied that assessment but understood to
of the mind, which is skills of adaptive behavior is part consider it as 18 years
especially characterized An intelligence quotient of of assessment of intellectual
by impairment of skills 70 is the cutoff functioning
manifested during the It categorizes ID into four
developmental period, severity levels that are based
which contribute to the on IQ
overall level of intelligence,
i.e., cognitive, language,
motor, and social abilities
DSM‑5b Intellectual Intellectual disability Components are reasoning, Deficits on adaptive functioning Defined as 18 years
disability (intellectual developmental problem‑solving, planning, result in failure to meet
(intellectual disorder) is a disorder abstract thinking, judgment, developmental and sociocultural
developmental with onset during the academic learning, and learning standards for personal independence
disorder) developmental period from experience and social responsibility
that includes intellectual On standardized tests of Without ongoing support, the
and adaptive functioning intelligence, score of 65‑75 deficits will affect one or more
deficits in conceptual, is considered to indicate activities of daily life, such as
social, and practical intellectual disability; where communication, social participation,
domains the test quotients have standard and independent living across
deviation of 15 and mean of 100 multiple environments
and standard error of 5 Nomenclature of severity levels
is same as it is in ICD‑10, but
the levels are decided based
on the deficits only in adaptive
functioning
DSM‑5 has explained the adaptive
behaviors in each of the three
domains of intellectual functioning
such as conceptual, social, and
practical domains in reference to the
severity level and age
Rights of Intellectual Intellectual disability, a Like ICD‑10, it has adopted Adaptive behavior is not defined Not explicitly defined,
Persons disability condition characterized by the IQ cutoff of 70 for ID, but is understood to cover a range but understood to
with significant limitation both and the same terminology to of day‑to‑day, social, and practical consider it as 18 years
Disabilities in intellectual functioning denote severity levels, but with skills
Act, 2016c (reasoning, learning, different cutoffs. The severity Scores on Vineland Social Maturity
and problem‑solving) levels are based on the scores scale (a standardized, normative
and in adaptive behavior of the Vineland Social Maturity measure adaptive behavior scale)
which covers a range of Scale (a standardized, normative are considered to define the severity
day‑to‑day, social, and measure adaptive behavior of ID
practical skills scale)
Profound disability=0‑20 (100%)
Severe=21‑35 (90%)
Moderate=36‑54 (75%)
Mild=55‑69 (50%)
Borderline=70‑84 (25%)
Note: Borderline disability is not
a benchmark disability
1CD‑11 Intellectual A group of developmental The working group advocated Adaptive behavior is not defined but Not explicitly defined,
Working developmental conditions characterized continuing clinical severity levels implied that difficulties in adaptive but understood to
Group on disorders by significant impairment mentioned in ICD-10 due to their behavior will manifest in meeting consider it as 18 years
Intellectual of cognitive functions, diagnostic and clinical utility. the demands of daily life expected
Disability which are associated with Therefore, IQ score should be for one’s age peers, cultural, and
(2011)d; 1 limitations of learning, considered as a clinical descriptor community environment. These
adaptive behavior, and among others that are considered difficulties include limitations in
skills important in determining the relevant conceptual, social, and
severity levels of ID practical skills
a
World Health Organization (1992). ICD‑10 Classification of Mental and Behavioural Disorders. Geneva: World Health Organization, bAmerican Psychiatric
Association (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th ed.. Arlington, VA: American Psychiatric Association, cGovernment of India. Rights
of Persons with Disabilities Act. New Delhi: Government of India, 2016, dSalvador‑Carulla L, Reed GM, Vaez‑Azizi LM, Cooper S‑A, Martinez‑Leal R, Bertell M,
et al. Intellectual developmental disorders: Towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD‑11. World Psychiatry
2011; 10:175‑180, 1Need to refer to ICD‑11 final guidelines as and when they become operational. ICD‑10 – International Classification of Diseases, 10th revision;
DSM‑5 – Diagnostic and Statistical Manual of Mental Disorders, 5th Edition; ID – Intellectual disability; IQ – Intelligence quotient
Indian Journal of Psychiatry, Volume 61 (Supplement 2), January 2019 S195

the needs may center around self‑care, sociocommunication Epilepsy is a common comorbidity with a prevalence
skills, and school readiness skills but not so much about of nearly 15%–30%. With increasing severity of ID, the
independent living or literacy. Similarly, for an adolescent prevalence increases to around 50%. Similarly, many
with ID, the needs could be about education, prevocational electroclinical syndromes of epilepsies such as early
training, and future independent living. As these examples infantile epileptic encephalopathies, West syndrome, and
indicate, ID will imply long-term, multidisciplinary approach Ohtahara syndrome as well as other late‑onset syndromes
to intervention for optimum outcome. such as Lennox–Gastaut syndrome are invariably associated
with ID. Ongoing seizures, especially if treatment refractory,
Etiological workup of intellectual disability often lead to developmental arrest. Such a condition
The etiology of ID/GDD is heterogeneous. The cause for remains a barrier against training and thereby against any
ID and GDD can be nongenetic/environmental or genetic. hope of making developmental gains. Hence, it is essential
Nongenetic causes such as prenatal infections, substance that these disorders need particular attention and rigorous
use like alcohol intake during pregnancy, and postnatal management.
meningoencephalitis account for only one‑third of cases
and the rest are of genetic origin. The flowchart in Another domain of neurological disorder that impairs
Figure 1 is a modified version of the “Finnish approach.” motor development and locomotion is the impairment in
This provides a means for systematic etiological pyramidal, extrapyramidal, or cerebellar systems as well as
evaluation of ID. The common causes are also listed in combined. Spasticity, dystonia, tremors, and ataxia often
the flowchart [Figure 1]. lead to impairment in motor development and thereby
successful locomotion. It is essential to differentiate the
This modification of the Finnish approach at the preliminary static or progressive forms of these disorders for appropriate
level reliably distinguishes probable genetic and nongenetic counseling and management.
etiologies in a majority of cases. Most of the nongenetic
causes produce ID which is usually static in nature and The medical comorbidities can be significant barriers for
potentially amenable for training. Further, the nongenetic training and developmental learning and require attention
causes in the subsequent pregnancies are either treatable in overall management. One can anticipate almost certainly
or preventable, especially the maternal factors such as the possibilities of physical disorders based on the etiology
malnutrition, diabetes, teratogenic drugs, and substance behind ID. With vast literature available on almost every
use. The Finnish approach also paves way for further one of the etiologies, we can predict and screen for the
diagnostic and genetic testing among those cases initially presence or absence of the comorbid medical disorders.
suspected to be of genetic etiology. Genetic diagnosis
is essential not only for accurate genetic counseling of Behavioral and psychiatric problems
recurrence risks and prenatal diagnosis, but also for People with ID are 3–5 times at higher risk of any
appropriate management. This is in the light of newer psychiatric disorder compared to the general population
strategies of treatment made available through thorough at all ages, with a cumulative prevalence of around 40%. It
understanding of the pathophysiology of genetic disorders is conceivable that global cerebral functioning is affected
for several disorders. With the advances in the field of by varying etiologies causing ID, which in turn can lead
therapeutics, over eighty potentially treatable disorders to a variety of neuropsychiatric manifestations. Besides
have been identified. Majority of such inherited cases can these neurobiological underpinnings, social discrimination
be accurately diagnosed, provided that advances in the field and deprivation can also influence the onset of psychiatric
of genetic diagnostics are utilized. comorbidities in this group. Neuropsychiatric manifestations
often commence insidiously with atypical presentation and
Comorbidities are commonly written off as spectrum manifestations of
Medical comorbidities ID. Hence, it is mostly underreported, misdiagnosed, and
Various medical comorbidities are often associated with undertreated. This pattern of “diagnostic overshadowing
ID. Depending on the etiology, varying degrees of both and masking” is well documented. Limited choice in
neurological and nonneurological comorbidities are using structured diagnostic interviews is another barrier
encountered. Some are a consequence of ID itself. Few for accurate diagnosis of comorbid psychiatric condition.
of the common medical comorbidities are the following: Eventually, only symptomatic treatment is resorted to,
epilepsy, spasticity, dystonia, ataxia, visual impairment, which may not solve the entire problems. Therefore, special
hearing impairment, congenital heart disease, cleft lip efforts are required to identify behavioural and psychiatric
and cleft palate, limb anomalies such as congenital talipes disorders.
equinovarus, congenital dislocation of hip joint, renal
malformations, failure to thrive with vitamin and mineral The etiology of ID can often provide clues to anticipate
deficiencies, recurrent infections, feeding disorder, and certain psychiatric comorbidities as certain behavioral
short stature. phenotypes are frequently associated with some syndromes.
S196 Indian Journal of Psychiatry, Volume 61 (Supplement 2), January 2019

Intellectual Disability
Detailed history, examination

and investigations provide
Yes support to environmental insults No
MRI Brain
Prenatal onset Paranatal onset Postnatal onset

of Insult of Insult of Insult CNS MALFORMATIONS
Always Prenatal [some
genetic & some
environmental or mixed]
PRENATAL PARANATAL POSTNATAL
Gestational Infections: meningitis, Severe Psycho-social Yes No
disorders- herpes encephalitis deprivation
Toxaemia Delivery complications Infection – meningitis
Diabetes Asphyxia Others- CNS damage
Teratogenic placental bleeding Toxic agents – lead Neuronal migration H/o familial nature of
agents- trauma Trauma and organization disease/ dysmorphism /
Alcohol Other Neonatal Tumours Disorders – metabolic derangement
Phenytoin complications Hypoxia Lissencephaly
Infections – Hypoglycaemia
Polymicrogyria
Toxoplasma Hyperbilirubinemia
Proliferation disorder-
CMV Cerebral haemorrhage GENETIC
Autosomal recessive
Rubella Aspiration Inherited; onset of
Microcephaly
Others the disorder can be
Closing defect –
prenatal or
spina bifida,
postnatal.
Encephalocele
Anterior midline-
Holoprosencephaly
Significant dysmorphism, Familial nature with Metabolic Familial, no CNS malformations,

microcephaly, multiple Mendelian inheritance & derangement in no metabolic derangement, no
congenital anomalies, specific phenotypic TMS or GCMS dysmorphism or environmental
short stature features insults
Chromosomal Monogenic Syndromic IEMs- Monogenic non

Autosomal Disorders- Amino acid disorders like syndromic Disorders-
Trisomy 21, 18 Fragile X Syndrome phenylketonuria, Many XLIDs and
Deletions-4p-, 5p- Smith Lemli Opitz syndrome homocystinuria, Maple Autosomal dominant
Mosaic Trisomy 9.. Coffin Lowry syndrome syrum urine disease or recessive IDs
Others- ring, marker Rett syndrome Lysosomal storage disorders- [Detail list in OMIM]
chromosomes, Tuberous sclerosis MPS, NCL Others
unbalanced translocations NF1 Polygenic or
X chromosomal Multifactorial?
Male-XXXY
Female-XXXX
Microdeletions
Angelman syndrome
Williams syndrome
Prader Willi syndrome
22q11 deletion syndrome
Smith Magenis syndrome
Figure 1: Finnish approach
Some examples are severe self‑injurious behavior in Lesch– hyperactivity in Fragile X syndrome; self‑hugging stereotypy
Nyhan syndrome; skin picking and obsessive‑compulsive and trichotillomania in Smith–Magenis syndrome;
disorder in Prader–Willi syndrome; autistic traits and schizophrenia‑like disorders in 22q11 deletion syndrome.
In majority, unspecified behavioral disorders are very and adaptive behaviors that have an onset during the
common. developmental period, to note possible etiology of ID, and to
identify comorbidities and response to interventions, if any.
OVERVIEW OF ASSESSMENTS AND Therefore, it requires interviewing of key people including
EVALUATION the index patient and behavioral observation of the patient.
Key people could be parents, caregivers, and service providers
Assessment is a process of collecting data for the purpose who know the birth and developmental history of the child.
of making decisions. Assessment provides us with baseline
information for intervention, whereas the evaluation is A useful and comprehensive approach to assessment would
the assessment of outcome of an intervention. In clinical include noting chief complaints in chronological order with
practice, therefore, we need both assessment and evaluation mode of onset, duration, and precipitating event followed
methods. The purpose of the assessment is as follows: by a history of presenting illness and a detailed prenatal
a. To identify the condition based on specific criteria and perinatal history as a prelude. Developmental history
and to establish that it is a clinical entity that requires in greater detail, particularly related to motor, language,
appropriate mental health services and placement and communication; self‑help skills; socioemotional skills;
decisions cognition; and occupational skills/leisure‑time activities;
b. To identify and treat etiological factors and risk factors medical comorbidities and its treatments; psychiatric history
for ID including the details of onset, evolution, and current status
c. To identify the needs implicated by the condition and of behavioral and other psychopathological disturbances;
design a program plan to reduce the disability impact and treatment history. This should be followed by a
d. To match the nature and needs of the conditions comprehensive family history including the three‑generation
effectively with the best intervention methods available pedigree; consanguinity; family background; current living
e. To evaluate the effectiveness of intervention. arrangements; and details of potential stressors, coping,
and adaptation by the family.
The following key questions could be asked to guide
assessment, intervention, and outcome measure [Please see Physical examination
Appendix 1 for more details]: It must involve routine systemic examination,
• What is the nature of the delay – specific or global? anthropometric assessment, and observation of atypical
• Is the delay associated with significant limitations in morphological features suggestive of specific genetic
intellectual functioning and adaptive behavior? disorders. Detailed physical examination helps to identify
• Are there any comorbidities? the etiology in a majority of cases, detect comorbid medical
• Are there any treatable etiological conditions? conditions, and also order appropriate investigations.
• What are the areas of intervention? Physical examination in cases with ID consists of three
• Where and how the intervention should be carried out? parts which are as follows:
• Where the individual should be placed for maximum
help (or, what are the existing agencies/service providers Anthropometry
through which the interventions can be implemented)? This provides indication toward nutritional status and
• How to evaluate the intervention outcome (or, what are underlying medical or genetic condition. The measures
the indices to stop intervening)? should include the following: height (length in case of
neonates and infants), arm span, upper segment and lower
DIAGNOSING INTELLECTUAL DIASBILITY segment lengths, sitting height, weight, head circumference,
AND ITS COMORBIDITIES chest circumference, abdominal circumference, intercanthal
and interpupillary distances, and palm and foot lengths.
The diagnostic process of ID is similar to any other
behavioral and mental disorders but with subtle Dysmorphology examination
differences. The diagnostic process involves history taking, Dysmorphology is the observation, documentation, and
observation including medical examination, intellectual study of birth defects as well as syndromes. A thorough
and adaptive behavioral assessment, identification of head‑to‑toe examination should be carried out to identify
comorbid psychiatric disorders, and need‑based laboratory minor physical anomalies (MPAs), which provide clues
investigations for other medical conditions. Therefore, the toward etiological diagnosis, especially the genetic disorders
diagnostic process encompasses several components that [Table 2]. It requires keen observation and knowledge of
are described as follows: normal versus abnormal morphology.
History taking Examination of major organ systems

The purpose of eliciting the history is to establish that there A systematic examination of all the organ systems to
is an evidence for deficits in both intellectual functioning rule out multiorgan involvement and comorbid medical

conditions has to be performed for overall assessment and social and interpersonal abilities. Socioculturally appropriate
management. It is essential to be meticulous in observing stimuli could be presented to understand the level of general
and documenting the findings of physical examination as fund of knowledge, generic concepts, abstract thinking,
many of the MPAs can be easily missed. Hence, it may be reasoning, and problem‑solving abilities that are not strictly
important to take photographs or videos after informed dependent on academic learning. However, clinicians may use
consenting to document and revise the original findings any standard format of general mental status examination for
at a later date. Some of the essential things to note are children to complement the behavioral observation.
vision, hearing, locomotion (videos may help), and any
major congenital anomalies. The presence of MPAs provides Assessment of intellectual functioning and adaptive
clues toward genetic versus nongenetic etiologies [Table 2]. behavior
Hence, branding every child universally with cerebral palsy This step is to confirm the clinical diagnosis and identify
which is often due to a nongenetic cause with a static course the severity level of ID. Both ICD‑10 and DSM‑5 recognize
can be avoided. Presence of four or more MPAs should alert the need for assessing the intellectual functioning with
the physician toward probable genetic cause. standardized tools that yield intelligence quotients (IQs).
DSM‑5 restricts the use of IQ to draw a cutoff of 65–75
If MPAs are encountered in a child, such a case can be (IQ 70± standard error of 5) for identifying ID. Conversely,
referred to a dysmorphologist/medical geneticist for further ICD‑10 advocates a IQ cutoff of 70 to identify ID and
evaluation (the following are excellent sources for syndromes different IQ ranges for categorizing four severity levels
and standard terminology and definitions of MPAs – Smith’s such as, mild (IQ: 50–69), moderate (IQ: 35–49), severe
Recognizable Patterns of Human Malformations and (IQ: 20–34), and profound (IQ <20). The ICD‑11 Working
“Elements of Morphology” in American Journal of Medical Group advocated that severity levels for IDD should rely
Genetics, 2009 [available from https://onlinelibrary.wiley. on a clinical description of the characteristics of each
com/toc/15524833/149A/1]). subcategory, but the IQ score can be considered as one of
the clinical descriptors that are important in determining
Further, progressive multiorgan dysfunction may be a clue the severity level. Therefore, till the time ICD‑11 comes into
toward a disorder of inborn error of metabolism which force, the ICD‑10 guidelines should be followed, which rely
may be potentially treatable. Organ system examination is on IQ both for identifying the condition and ascertaining
similar to any branch in medicine, and clinicians can refer to the severity levels of ID.
standard books like Hutchison’s Clinical Methods.
Clinicians may note that the choice of tests in the Indian
Behavioral observation context is limited notwithstanding the fact that the norms
The purpose of behavioral observation is to corroborate are in many cases are not revised [Appendix 2]. This is a
the clinical history with regard to intellectual functioning major concern given the evidence for Flynn effect, which
and behavioral repertoire. Therefore, it should start with refers to observed rise in IQ scores over time and related
observation of general appearance, any oddities in behavior, norm obsolescence. Therefore, the IQ scores should not be
attention span, receptive and expressive speech abilities, and rigidly interpreted.
Table 2: Some common minor physical anomalies and other findings on physical examination
Anatomical Features
Region
Scalp hair Sparse, light colored, double whorl on scalp, easily breakable
Shape of skull Brachycephaly, scaphocephaly, trigonocephaly, oxycephaly, plagiocephaly
Facial appearance Coarse facies, elongated, triangular, small
Eyes and periorbital Deeply set, prominent eyes, microphthalmia, upslanting/downslanting palpebral fissures, hypertelorism, epicanthal folds, strabismus,
structures ptosis, bushy eyebrows, synophrys, microcornea, corneal clouding, cataracts, coloboma of iris, blue sclera, telangiectasia, etc.
Ears Low set, small, large, malformed, anteverted, posteriorly rotated, preauricular tags, pits, cup shaped, etc.
Nose Depressed nasal bridge, short and stubby, beak shaped, bulbous tip, flaring or hypoplastic nostrils, anteverted nares, etc.
Palate High arched, ridged palate, clefting, bifid uvula, etc.
Chin Prominent, retrognathia, micrognathia, etc.
Hands Broad hands, short hands, simian crease, Sidney line, spade shaped, etc.
Fingers Clinodactyly, brachydactyly, syndactyly, camptodacyly, arachnodactyly, polydactyly, broad thumb, etc.
Chest Pectus excavatum, pectus carinatum, nipple anomalies, gynecomastia
Abdomen Protuberant, scaphoid, umbilical hernia, hepato‑splenomegaly, inguinal hernia
Spine Kyphosis, scoliosis, spina bifida
External genitalia Micropenis, macro‑orchidism, undescended testis, ambiguous genitalia, hypospadias, absent secondary sexual characteristics, shawl
scrotum, etc.
Skin Dry and coarse, café‑au‑lait spots, abnormal pigmentation, hemangioma, ichthyosis, absence of sweating
Feet Pes planus, pes cavus, valgus/varus anomaly, broad hallux, increased distance between the 1st and 2nd toes
Skeletal Exostoses, increase carrying angle, joint hypermobility

When IQ tests are not applicable because of young age (e.g., mental retardation plus E00. [congenital iodine‑deficiency
children below 3 years) or associated sensory‑motor syndrome]). Evidence for additional coding of etiological
issues and gross understimulation, standardized causes may come from laboratory findings.
developmental scales (e.g., Developmental Screening Test
and Developmental Assessment Scales for Indian Infants) Diagnosis of comorbid psychiatric disorder
can be used as applicable. The developmental tests yield Any changes in behavior compared to previous period, dip
“developmental quotients” which are interpreted in the in overall functioning, and changes in vegetative functioning
same way as IQ scores. should be carefully recorded in each visit. If it is pervasive
and indicative of a comorbid psychiatric disorder, it has
With regard to the assessment of adaptive behavior, Vineland to be carefully considered. A timeline method would be
Social Maturity Scale (VSMS) is the only standardized helpful when in doubt. During clinical evaluation, a greater
measure available in India at present. The VSMS yields social reliance on onset and chronological evolution of symptoms,
quotient (SQ) and a profile of eight important domains intensity, frequency, context of occurrence of symptoms,
of adaptive behavior. If the administration of VSMS is not and precipitating and relieving factors elicited through
possible for any reason, clinicians can ask socioculturally careful interviewing of parents and caregivers will help in
relevant questions to understand the level of adaptive uncovering the psychopathology. School report is a valuable
behavioral functioning. If needed, DSM‑5 list of specifiers additional source of information. A period of behavioral
for severity levels of ID could be referred to assess the observation rather than just traditional psychiatric interview
adaptive behaviors till the time ICD‑11 guidelines come up. will often help the clinician to decide on the presence and
type of psychiatric disorder.
Wherever IQ and SQ indicate different severity levels of ID,
decisions are taken in favor of SQ scores because the latter The behavioral observation will start from the moment the
denotes the degree to which the index patient is able to child enters the consultation room. Equal attention needs
meet the standards of culture‑appropriate demands of daily to be paid to child’s behaviors, parental reports, as well as
life. Thus, SQ reflects the severity of ID better than IQ under to verbal interview in arriving at conclusions. If necessary,
ordinary circumstances. However, when assessment of the the child and its parents must be interviewed separately.
severity of ID by means of the usual procedures is rendered Playroom observation and multiple baseline observations for
particularly difficult or impossible by associated sensory or a functional analysis (Antecedent‑Behavior‑Consequences
physical impairments and severe behavioral disturbances, analysis) of symptoms are sometimes required.
the condition should be identified as “Other mental
retardation.” If there is evidence of mental retardation, but Clinicians may need to create child‑friendly space with
insufficient information is available to assign the patient appropriate toys, picture books, and art and craft materials.
to one of the four categories or other mental retardation, The setting should be safe, well lit, and ventilated. It is
it can be identified as “unspecified mental retardation.” preferable that in‑depth interview is conducted only after
In case of “Other mental retardation” and “unspecified developing rapport with the child. The rapport could be
mental retardation,” more information on developmental developed by allowing the child to sit where he/she prefers
skill repertoire and periodical assessments of intellectual to sit or move; asking about their age, likes, and pet name;
and adaptive behavior is desirable to infer the current and offering toys. It is important to build partnership with
level of functioning and associated severity levels of ID. parents from the outset, which could be achieved by listening
Test selection should be proper if the person has comorbid and valuing their opinions, impressions, and efforts and
sensory‑motor impairments [Appendix 3]. Lastly, it must be appreciating the parents for the right things they have done.
recognized that the use of IQ and adaptive measures for
clinical diagnosis is different from disability assessment Depending on the language development and conversational
and the latter has specific guidelines that must be strictly skills, verbal interview can be conducted with simple,
adhered to. structured, clear, and concrete questions. It is better to
avoid leading questions. The examination may include the
Confirmation of intellectual disability diagnosis following:
Based on the information obtained through case history, • Basics: Behaviors suggesting sensory‑motor
observation, and testing, ID could be coded into any of the impairments or physical health issues
six categories such as mild, moderate, severe, profound, • Response to interview situation: Excited, fearful, tense,
other, and unspecified mental retardation. The ICD‑10 shy, inhibited, guarded, uncooperative, or defiant
has provision for using a fourth character to specify the • Alertness: Overaroused, withdrawn
extent of the behavioral impairment if this is not due to an • Attachment to parents and response to separation:
associated disorder (e.g., F7x. 0 to denote “no, or minimal, Clinging, wanting to be carried all the time, indifferent
impairment of behavior”) and an additional code from the to separation
ICD‑10 should be used if the cause is known (e.g., F72 severe • Sociability: Social orientation, approachability,

social responsiveness, eye‑to‑eye contact, reciprocal financial circumstances of the family, clinical hints, and
interactions, and awareness of social boundaries treatability to order appropriate investigations. One should
• Motor activity level: Fidgetiness, restlessness, always consider the possibility of recurrence of the same
hyperactivity, lethargy disorder in the next pregnancy before an investigation is
• Course of motor behaviors during interview or response deemed unnecessary. This has to be discussed with the family
to firm instructions: Quiet initially, but restless later on; and appropriate genetic counseling should be provided. Family
unresponsive to firm instructions can then chose to proceed or not to proceed with further
• Impulse control: Snatching, spilling, falling, bumping, investigations. Magnetic resonance imaging of brain and
climbing, interfering, temper tantrums; aggressive acts screening of metabolic disorders are considered mandatory
such as biting, throwing, beating, pulling hair, slapping investigations in all cases of ID. The American Academy of
• Attention and concentration: Goal directedness, task Pediatrics and American Academy of Neurology provide useful
completion, distractibility guidelines in this regard (Please refer to Moeschler (2008) and
• Speech, language, and communication: Verbal/ Michelson et al. (2011) for more details).
nonverbal comprehension and expression; vocabulary,
articulation, and flow PSYCHOSOCIAL ASSESSMENTS
• Mood: Inhibited, excessively cheerful, whining and
crying, irritable Persons with ID will be at a high risk for neglect and abuse.
• Play behavior: Type of activity, duration, themes, etc. Therefore, risk assessment should be an integral part of
• Other inappropriate behaviors: Any excess behaviors that comprehensive assessment plan in ID. Adaptive behavior is
are inappropriate to the age and sociocultural context always impaired in people with ID, but the deficits are less
• Impressions on current developmental attainment: evident in environments where support systems are in place.
Whether excess behaviors or skill deficits are typical of Hence, support systems available to the family and child
a known psychiatric or developmental disorder? must be reviewed. Therefore, psychosocial assessments are
• Parent–child interactions: Quality of engagement with very important.
child; communication patterns; degree and quality
of control over the child; response to good and bad Assessment of family needs and functioning
behaviors. Parents and families are the main source to implement the
intervention plan in any condition that requires extensive
Standardized instruments such as Psychiatric Assessment long‑term support. Specifically in the context of ID, studies
Schedule for Adults with Developmental Disability, Reiss indicate that their perceptions of the condition, disability
Screen for Maladaptive Behavior, Psychopathology Inventory impact, perceived support, and stress and coping mechanisms
for Mentally Retarded Adults, Developmental Behavior are very important moderators of intervention. Therefore,
Checklist, and Psychiatric Instrument for the Intellectually clinicians must consider assessing these areas further. Need
Disabled Adults can be utilized as per the need. However, may be appropriate tools such as the following could be
rating scales should be used only to complement the clinical used for this purpose: Global Entrepreneurship Monitor
observations. Questionnaire, Disability Impact Scale, Family Support Scale,
Family Efficacy Scale, Family Needs Schedule (note: these
LABORATORY INVESTIGATIONS scales are available in public domain at www.nimhindia.org/
punblications); and Family Interview for Stress and Coping
Often, it is difficult to completely examine children with in Mental Retardation for assessing stress and coping of the
ID due to their inability to communicate or comprehend parents of children with ID.
commands or due to their behavioral issues. Some of the
malformations can be missed in spite of an exhaustive and Psychoeducational assessments
careful examination. Malformations such as atrial septal With universalization of elementary education and the
defect in early infancy, single kidney, holoprosencephaly, Right to Education act, many children with ID are in the
and mild hearing/visual impairment can be missed during mainstream as compared to a decade ago. Children both
routine examination, which can be barriers for adequate in the mainstream and in special school settings may need
management of ID. As highlighted in the earlier sections, appropriate psychoeducational assessment. Tools such as the
an array of etiological factors can result in ID and at least Grade Level Assessment Device and Functional Assessment
some of them can be potentially treated. Hence, a bunch of Checklists for Programming (available at www.nimhindia.org/
investigations are essential not only to identify the cause punblications) can be used for this purpose. Another gray area
of ID, but also to make sure the treatable causes have been is the assessment of “school readiness skills” because there
investigated for [Table 3]. are no standardized measures. Often, children diagnosed
with GDD or young children with ID are referred to mental
Majority of Indian families do not possess medical insurance health professionals for the assessment of school readiness
scheme. Hence, clinicians have to carefully consider the skills. In such a scenario, a clinical assessment could be carried

Table 3: Physical investigations in intellectual disability

Test Examples of conditions detected
Brain imaging with MRI and MRS* CNS malformations, cerebral creatine deficiency, hypomyelinating and dysmyelinating disorders
Thyroid function test Hypothyroidism
Advanced metabolic tests such as GCMS, TMS* Fatty acid oxidation disorders, amino acid disorders, urea cycle disorders and organic acidurias
Enzyme studies Tay‑Sachs disease, metachromatic, leukodystrophy, some NCLs, MPS
Urine screen for mucopolysaccharides and MPS and Oligosaccharidosis
oligosaccharides
Karyotyping Down syndrome, large deletions, ring/marker chromosomes, translocations
FISH and MLPA Prader‑Willi syndrome, William syndrome, Subtelomeric deletions
Chromosomal microarray CNVs (many microdeletion duplication syndromes)
Next‑generation sequencing/Sanger sequencing Monogenic disorders such as Rett syndrome (MECP2 mutation), XLID, tuberous sclerosis, NF1
Repeat primed PCR Fragile X syndrome
EEG Epileptic encephalopathies such as West syndrome
Hearing evaluation (BAER) Sensorineural hearing impairment
Visual evaluation Wilson disease, cataract, optic atrophy, cortical blindness, refractive error
Blood group of child and parents Rh iso‑immunization
Immunologic tests (IgM antibodies) TORCH infections (to be performed preferably within 6‑8 weeks of delivery)
Investigations for organ system functioning Cardiac malformations
ECHO Renal malformations, nephropathy, hepatosplenomegaly due to storage disorders
Renal and Liver function tests with ultrasound abdomen
*Mandatory investigations if obvious etiologies (such as Down syndrome, NF1) are not found clinically. GCMS: Gas chromatographic mass spectroscopy,
TMS: Tandem mass spectroscopy, MRS: Magnetic resonance spectroscopy, MRI: Magnetic resonance imaging; FISH – Fluorescence in situ hybridization;
MLPA – Multiplex Ligation‑Dependent Probe Amplification; BAER – Brainstem auditory‑evoked response; ECHO – Echocardiography; NCLs – Neuronal
ceroid lipofuscinoses; MPS – Mucopolysaccharidoses; XLID – X-linked Intellectual Disability; CNS – Central nervous system; ID – Intellectual disability;
TORCH – Congenital taxoplasma infection, rubella, cytomegalovirus and herpes
out by focusing on the following: sensory‑motor abilities; state government; (b) pediatrician or pediatric neurologist
eye–hand coordination skills; activity‑based attention span; (where available)/psychiatrist or physician (if age >18 years);
receptive and expressive skills (but, not necessarily verbal (c) clinical or rehabilitation psychologist; and (d) psychiatrist.
communication); independent personal care, particularly It is preferable that clinicians time to time refer to relevant
toilet indication; drinking and eating; sitting tolerance; source to be updated with the guidelines. Temporary
and basic social skills such as eye contact, waiting for turn, certificate can be issued for children <5 years, which will
following the authority, staying without primary caregivers, be valid for a maximum of 3 or 5 years of age, whichever
and ability to engage in play. In addition to this, any significant is earlier. For children aged >5 years, the certificate will
medical history (e.g., seizures, attention‑deficit/hyperactivity mention when to renew. As per the act, the certificate will
disorder [ADHD]) which needs supervision of medication in have to be renewed at the age of 5, 10, and 18 years. The
the classroom should also be counted. A special note should certificate issued at 18 years of age will be valid lifelong.
be made if any aids and appliances are required to enhance
the functional abilities of the child (e.g., reading glasses, FORMULATING A TREATMENT PLAN
hearing aids, wheelchairs, and specially adapted furniture).
Accordingly, the assessment report must include appropriate The treatment plan needs to address the issues related
recommendation for placement and intervention. to the following five dimensions as indicated in a given
case (Note: The multiaxial system of comprehensive
DISABILITY ASSESSMENT diagnosis of IDD is taken from NIMHANS evaluation pro
forma for IDDs):
According to the guidelines based on the Rights of Persons 1. Level of intellectual functioning (i.e., severity of ID)
with Disabilities Act 2016 (Government of India, 2018, p. 94), 2. Etiology/syndrome
disability assessment is done through three stages such as 3. Associated medical problems
screening, diagnosis, and disability calculation [Table 4]. 4. Associated psychiatric problems
The minimum age for certification is one completed year. 5. Family and psychosocial factors (e.g., awareness,
Children above 1 year and up to the age of 5 years shall be attitude‑overprotective, negligent, hostile, favorable;
given a certificate with a diagnosis of GDD. Children above expectations; consistency of parenting; quality of
the age of 5 years shall be given a diagnosis and certificate stimulation; stressors in the family, family discard;
as ID. The medical superintendent or chief medical officer caregivers’ burnout).
or civil surgeon or any other equivalent authority as notified
by the state government shall be the head of the medical Each of these five dimensions will have implications for
board. The authority shall comprise the following: (a) the biological, psychological, and social intervention. Consider,
medical superintendent or chief medical officer or civil for example, a person with mild ID and ASD and seizures,
surgeon or any other equivalent authority as notified by the with limited access to services and health‑care facilities
Table 4: Disability certification process as per the guidelines based on Rights of Persons with Disabilities Act
Screening Diagnosis Disability calculation
Many of the children with ID/GD are The screened children will be referred to child/ The disability calculation will be done based on VSMS
on follow‑up with pediatricians as clinical psychologists for adaptive functioning score. The following will be used for disability calculation
developmental delay. Hence, they can be and IQ testing. The tools that can be used for the VSMS score 0‑20: Profound disability ‑ 100%
assessed by pediatricians and screened same include VSMS for the adaptive functioning VSMS score 21‑35: Severe disability ‑ 90%
for associated comorbidities, namely, and BKT/MISIC for IQ testing. Based on these, VSMS score 36‑54: Moderate disability ‑ 75%
hearing/vision/locomotor impairments/ the diagnosis of ID will be confirmed. Based on VSMS score 55‑69: Mild disability ‑ 50%
epilepsy. Then, these children are adaptive functioning assessment, severity scoring VSMS score 70‑84: borderline disability ‑ 25%
referred for detailed assessment will be done and disability for ID will be charted
VSMS – Vineland Social Maturity Scale; BKT – Binet–Kamat Test; ID – Intellectual disability; MISIC – Malin’s Intelligence Scale for Indian Children;
IQ – Intelligence quotient
in his/her community will have significant impairment have one child with ID and would like to know the risk of
in functioning as compared to a person with ID alone. In recurrence and possibility of prenatal diagnosis. Genetic
this example, the former will need appropriate medical, counseling not only provides accurate information on the
behavioral, and psychosocial interventions to address all prognosis of disorders and recurrence risks, but also helps
these issues. in removing guilt and allaying ongoing recrimination in
families.
Setting for intervention is an important factor. Unless there
is an indication for careful monitoring of medication on Management of comorbid behavioral and psychiatric disorders
daily basis or poor therapeutic outcome if the patient is Nearly 20%–80% of the ID population can have problematic
anywhere other than in the institutional setting, individuals behaviors ranging from hyperactivity, temper tantrums, odd
with ID must be offered services in the community or on behaviors, to aggression. Behavioral problems are potential
day‑care basis. The idea is that the persons with ID should reasons for stigma, segregation, and caregiver’s burden. Lack
be in a least intrusive environment so that they can have of occupation and limited developmental opportunities and
maximum opportunities for learning and development in communication deficits are major factors of problematic
natural environment. behaviors. While problematic behaviors can be a source or
trigger for psychiatric problem and/or part of psychiatric
Medical interventions disorder, they can also exist independently. In either case,
Every attempt should be made to identify treatable causes a thorough behavioral plan is required. Identification of
of ID or at least potentially treatable symptoms such as the problematic behaviors is the first step in management.
hearing impairment and spasticity. Some of the conditions Behaviors that lead to social exclusion, stigma, and those
which present with ID are nearly completely preventable or that interfere with learning should be given priority. Based
to some extent reversible with appropriate management, on the hierarchy, target behaviors can be selected and
provided that it is treated early in the course. Examples functional analysis can be conducted to understand the
of treatable disorders are listed in Table 5, and such cases antecedents and maintaining factors. Basic premise of the
have to be referred to specialists accordingly for further behavioral management is that opportunities are created
management. to facilitate positive behaviors that would otherwise
serve the same function as the problematic behaviors
It is also important to treat associated medical problems do (e.g., reinforcing any form of socially appropriate
along with therapies aimed at altering the pathophysiology communication as a substitute for temper tantrums
among children with ID. Specialists need to be consulted secondary to verbal communication deficits). In principle,
for appropriate management to obtain maximal benefits. the techniques should be least intrusive and culturally
Few examples are treatment of epilepsy with antiepileptic appropriate; therefore, the behavioral management plan
drugs, spasticity with antispasticity medications, hearing can be implemented through the following three levels:
impairment with hearing aids and cochlear implantation, i. Restructuring the environment to control the antecedents
sleep problems with sedatives as well as sleep hygiene and provide ample opportunities for positive learning
techniques, and so on. ii. Differential reinforcement to strengthen the adaptive
behaviors by providing opportunities for reinforcement
Genetic counseling of adaptive behaviors
Genetic counseling is often deemed as a specialty in the iii. Controlling inappropriate reinforcement of problematic
current medical practice though it can be practiced by all behaviors.
clinicians to varying degrees depending on their expertise.
As two‑thirds of cases of ID have genetic etiologies, genetic It is also important to recognize that all problematic
counseling becomes mandatory. The most common situation behaviors are not due to environmentally mediated,
is when genetic counseling is required in ID is when parents inappropriate reinforcement practices. Problematic

Table 5: Summary of medical interventions

Therapeutic modality Examples of disorders
Replacement of deficient molecules Thyroxine supplementation for hypothyroidism
Enzyme replacement therapy for MPS
Copper histidine for Menkes disease
Small molecule therapy Usually provided at high doses (beyond daily recommended doses). Tetrahydrobiopterin along with
low phenylalanine diet for PKU
Creatine monohydrate for CCDS
Pyridoxine, Vitamin B12, and folate for homocystinuria
Bone marrow transplantation For alpha‑mannosidosis and MPS 1
Pharmacotherapy Vigabatrin for succinic semialdehyde dehydrogenase deficiency and tuberous sclerosis
Special/modified diet For many organic acidurias and aminoacidopathies such as PKU, glutaric aciduria type 1, and MSUD.
Chelation of excess metals Wilson disease and manganese transporter deficiency
MPS – Mucopolysaccharidoses; MSUD – Maple syrup urine disease; CCDS – Cerebral creatine deficiency syndromes; PKU – Phenylketonuria
behaviors may be an atypical presentation of psychiatric Nonpharmacological management

comorbidity or an indicator of the onset of a psychiatric Child‑centric interventions
episode. In some cases, problematic behaviors may be a Nonpharmacological interventions should be guided by life
manifestation of ineffective coping strategies to manage span and functional approaches. Accordingly, the following
the psychiatric distress. general framework can be adapted in regular clinical
practice:
Psychiatric comorbidity not only presents itself more • Life span approach: Life span approach is that it
diffusely and atypically in these children, but also it is regards the developmental needs and the tasks that
often difficult to treat. Carefully studying behavioral profile the individual must achieve at each developmental
may point to a particular psychiatric disorder. Management stage to adapt to the environment. Accordingly, the
may need a multipronged approach usually involving skill training focuses on all important domains of
pharmacological and psychosocial interventions. If there is adaptive behaviors such as conceptual, social, and
inadequate information to establish a psychiatric diagnosis, practical skills that are considered important at a
psychosocial interventions should be attempted first. given developmental stage. In the initial 3 years, the
focus should be on acquiring sensory‑motor skills,
As only a handful of medications have been licensed for use socio‑communication skills, basic self‑help skills, and
in children, often, it is difficult to manage these disorders. concepts. During 3–6 years of age, the focus can be
This has to be discussed with parents in detail and their on school readiness skills and mastery of culturally
expectations should be handled regarding the outcome of appropriate adaptive behaviors. During 6–18 years
such a treatment. Very few large systematic controlled trials of age, the focus should be on the consolidation of
are available in ID group; however, open drug trials, case academic and independent personal skills that can
reports, and expert reviews suggest the following: lead to future vocational training, employment, and
• Begin with low dosage and increase it slowly adult independent living
• Adequate trial time should be allowed before deeming • Functional approach: It is preferable that the tasks taught
failure of a medication to the individual enable him or her to function well in
• Outcome to be monitored at multiple settings (home, day‑to‑day tasks. For example, there is no functional
school) utility of mastering the spelling of five exotic animals
• Rationalize medications when multiple medications are as compared to mastering the sight words essential for
being used and change one drug at a time daily functioning and community use (e.g., danger, exit,
• Pediatric dosing schedules and guideline should be stop, price, and own name). Irrespective of the age and
followed. sociocultural context, each individual first needs training
in self‑care (toilet control, bathing, eating, dressing, and
There are few studies on medications in comorbid disorders grooming), motor skills (especially, eye–hand coordination
in ID, namely, methylphenidate in ADHD, or antipsychotics skills), receptive and expressive language abilities, social
for schizophrenia. Risperidone also is widely studied as skills, and concepts in one set. Later, the children can be
symptomatic treatment for problematic behaviors such as recommended for academics or functional academics,
stereotypes and aggression [Table 6]. For further details in finally leading to vocational training, gainful occupation,
dosing and indications, the latest edition of the Maudsley and independent living skills. Throughout the program,
Prescribing Guidelines are a good source. Specific details health and safety skills should be strengthened.
on pharmacological management could also found in • Making provisions for additional disabilities: Depending
condition‑specific clinical practice guidelines of the Indian on additional disabilities, the child may need aids and
Psychiatric Society. appliances and appropriate therapeutic interventions.

Table 6: Summary of pharmacological treatment options

Symptom/disorder Medication found to be Dose# Caution/side effects
effective in children with ID
Hyperactivity, ADHD Methylphenidate (IR) Start with 5‑10 mg, increments of 5‑10 mg/week, maximum Tics, insomnia, anorexia
Clonidine up to 2.1 mg/kg (height and weight monitoring)
Risperidone (especially in the 0.1 to 0.5 mg/kg in 2‑3 divided doses Excess somnolence, hypotension
presence of aggression and 0.5‑2 mg (monitoring of BP required)
irritability) extrapyramidal symptoms, and
somnolence
Aggression, self‑injurious Risperidone In general, dose in pediatric population is 0.5‑2 mg Postural hypotension and excess
behaviors, and irritability Clonidine Start with 0.25 mg/day for children <20 kg weight and somnolence
0.5 mg/day for children >20 kg weight*
0.1‑0.5 mg/kg in 2‑3 divided doses
Stereotypy and RRBI Risperidone Dosage as above As above
SSRIs especially fluoxetine Start with 2.5 mg/day up to 10 mg/day Agitation, insomnia, anorexia,
for other RRBI (Cochrane May be lower than usual doses used to treat depression in suicidal ideation
review 2013 showed no neurotypical children
evidence of effectiveness and
emerging evidence of harm)
Depression, obsessionality, SSRI Fluoxetine 5‑10 mg/day is the starting dose Higher risk for hypomania in ID
and anxiety Sertraline 25‑50 mg daily. Effective dose is 50‑100 mg children
Sleep disturbance Melatonin 1‑10 mg doses have been tried; usual starting dose in Epilepsy (no conclusive evidence)
If insomnia is associated with children is a 2 mg single late evening dose Paradoxical heightened agitation,
hyperarousal, then clonidine Wide range of benzodiazepines such as clonazepam impulsivity, and disinhibition
or clonazepam (0.25‑0.5 mg) and lorazepam (0.5‑1 mg) have been tried. Excess somnolence
Best titrated based on symptoms starting from lowest dose.
However, less preferred due to paradoxical reactions
#
Doses are as used in non-ID children, but there is uncertainty regarding optimal dose in ID population. *Doses are as also used in autism, but the literature is
limited regarding dosage in ID. RRBI – Restricted repetitive behaviors and interests; IR – Immediate release; BP – Blood pressure; ID – Intellectual disability;
ADHD – Attention‑deficit/hyperactivity disorder
For example, adapted furniture in cerebral palsy and Anganwadi Centers of the Integrated Child Development
hearing aids for hearing impairment Services (ICDS)
• Special focus on early intervention: Early identification • Referral and linkage: Appropriate services can be obtained
and intervention with children at risk for GDD or ID from programs under the Sarva Shiksha Abhiyan,
should be a top priority. It is also important to recognize National Institute of Open Schooling, District Disability
that early intervention can start from prenatal period in Rehabilitation Centers, Composite Rehabilitation
terms of identifying high‑risk pregnancies, providing Centers, national institutes, and local nongovernment
appropriate health care, and dealing with psychosocial agencies (more details of the government schemes
adversities. Nonetheless, the postnatal early can be found at www.socialjustice.nic.in). Wherever
intervention plan should include accurate diagnosis of possible, it is better to refer the individual to the
ID and comorbid conditions; identification of underlying agencies in their own locality to cut down the costs of
etiological processes and methods of treatment as rehabilitation. Therefore, a registry of local, regional, and
applicable; and activities to facilitate sensory‑motor national agencies working in the area of developmental
integration, speech and language development, and disabilities can be maintained for this purpose.
socioemotional development. The basis of early
intervention is healthy bonding and attachment Family‑centered interventions
between mother and the child. Therefore, any stable • Parents and families should be given proper information
caregiver can also be involved in early stimulation. In regarding the nature, needs, and management of ID
principle, early intervention programs should aim at and its comorbidities in simple language devoid of any
stabilizing the current developmental milestones and technical terms. Need may be appropriate literature,
create opportunities for the development of future and specific web‑based sources can be recommended
tasks. Play‑based methods and culturally rooted good for further reading. Siblings and other key family
practices of early child care should be strengthened. members can also be involved in the program plan.
Materials recommended for intervention should be • Parents and families should be supported in finding
easily available and culturally appropriate; otherwise, right resources for health care, therapy, education, and
parents will be overwhelmed if they are not easily vocational and occupational needs.
available. For more formal intervention, referrals • Ensure that parents and families are aware of the social
can be to the District Early Intervention Centers of provisions and importance of disability certificate for
the Rashtriya Bal Swasthya Karyakram (RBSK) and the the child to avail the same.

• Emphasize on self‑advocacy by creating awareness SUGGESTED READING

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Appendix 1: Key questions to aid assessment, intervention, and treatment plan

Decision area Key questions to be answered
Diagnosis What precipitated the consultation?
Is there a delay in important areas of development such as motor; speech, language, and communication; personal care/
self‑help skills, cognition/learning, and emotion? If yes, is it a global delay (i.e., delay in more than one important area of
development)? Or, specific delay (i.e., deficit in only one area, e.g., speech and communication deficits in case of hearing
impairment)?
Does the global delay suggest significant impairments in intellectual functioning as is reflected in the adaptive functioning that
is considered appropriate for the age and sociocultural standards for personal independence and social responsibility? (Note:
Asking key questions related to adaptive behavior that reflect practical, conceptual, and social skills is important; presenting
questions based on the behavioral indicators given in DMS‑5 [American Psychiatric Association, 2013; p. 35‑36] will be useful
in this regard)
Are the deficits in intellectual functioning and adaptive behavior appeared during the developmental period (i.e., before the age
of 18 years)?
Special circumstances: Is there an evidence for significant impairments in intellectual functioning and adaptive
behaviors but no reliable early developmental history as in case of children reported with sheltered homes, orphanages,
and adopted or those under foster care; or who do not have valid birth records or the caregiver does not have adequate
information?
Comorbidities/ Are there any identifiable comorbid conditions or co‑occurrences? If yes, do they have specific implications for health care and
co‑occurrences other forms of interventions?
Do the comorbid conditions increase the severity of ID because of additional disability? And, do they denote “multiple
disabilities”? If yes, do they have specific implications for health care and other forms of interventions?
Etiology and risk Are there any treatable etiological conditions of ID? Or, are there any risk factors associated with the present condition or have
factors the potential to aggravate the disability in future? Does it need further medical examination and laboratory investigations to
confirm the screening results? If yes, specify them (for specific details, see the subsection on medical comorbidities for possible
etiological conditions, risk factors, and essential laboratory investigations)
Nature and needs of the Given the developmental stage and the sociocultural background of the individual with ID, what are the immediate needs of the
condition child and family and other service providers?
What would be the impact on the child, family, and the immediate environment if the needs are not met?
How does the current needs impact the future independent living of the individual with ID?
Does the person with ID require any special assistance and adaptations to meet the identified needs?
What are the resources available at various levels (e.g., family, neighborhood, and community) to meet the identified needs?
Intervention plan Is there a need for medication to treat associated medical conditions including psychiatric comorbidities? If yes, identify the
condition and medical intervention
Does the child require referrals for any therapies (e.g., speech, audiological, physiotherapy, and occupational therapy,
educational [supported/special/integrative]) to restore or enhance the functional abilities
Does the child need specific behavioral management plan for managing challenging behaviors?
If the evidence‑based intervention plan including all or any of the above strategies is implemented, in what the quality of life of
the person with ID will be better?
Is the intervention plan cost‑effective?
Are there any significant side effects or offshoot troubles of the intervention?
Will the intervention plan facilitate inclusion of the person with ID in the mainstream?
Knowledge, attitudes, and perceptions of the caregivers with regard to the condition? What are the needs of the
caregivers?
Will the intervention plan help reduce the caregiver’s burden?
Placement decisions Which is the best setting to deliver the targeted interventions (e.g., home, hospitals, vocational/rehabilitation centers; day‑care
or residential schools, Anganwadi centers, and District Early Intervention Centers)?
If medical and therapeutic interventions are required, which is the best setting to obtain the maximum positive outcome for the
individual with ID ‑ outpatient or inpatient?
Who are the people or agencies through which the intervention can be delivered?
Is the placement least intrusive that the persons with ID will continue to have normal developmental and learning opportunities
and appropriate sociocultural experiences?
Are all options for community integration are exhausted before considering segregation from the mainstream for any reason
including safety, dignity, optimizing the potential, quality of life, and well‑being?
Evaluating the outcome Are there any indicators other than the direct measures to suggest that the intervention is effective?
of intervention Is the positive therapeutic outcome observed in one setting is maintained or generalized to other settings?
ID – Intellectual disability

Appendix 2: Scales of intellectual functioning and adaptive behavior adapted or normed for Indian population
Test Indian Adaptation Age Content Merits Challenges
Seguin Form Board Bharatraj (1971) Reliable for 3 to Performance It serves as a quick It is not much valid for children
Goel and Sen (1984); 11 years old, but test measure of general aged above 11 years of age, when
Revalidated by valid for all age intelligence it becomes more a measure of
Venkatesan (1998)* groups of people visuo‑motor speed than global
with ID intelligence
Binet‑Kamat Test of Kamat (1967) adapted 1916 3 years ‑ adulthood Age scale; Balances verbal and Specific test items depend on formal
intelligence revision of Binet‑Simon Predominantly performance items education. Verbal items not available
Test; Reappraised by verbal for vernacular languages other than
Venkatesan (2002a)* Kannada and Marathi. some items
are completely redundant
Stanford‑Binet Kulshreshta (1971) 3 years ‑ adulthood Age scale; Balances verbal and Did not include people with low
Intelligence Scale Predominantly performance items intelligence in the sample
verbal and also offers a short
scale. More suitable for
Hindi‑speaking population
Malin’s Intelligence Malin (1973) adapted the 6‑16 years Has verbal and It measures both verbal Some of the verbal scales depend on
Scale for Indian original scale of Wechsler’s performance and performance formal education
Children Intelligence Scale for Children tests intelligence
Developmental Bharat Raj (1977) 0‑15 Developmental It assesses global DST is highly loaded with speech
Screening Test tasks development and language items; hence, it must
be interpreted cautiously in case of
conditions such as cerebral palsy,
autism, and speech and hearing
impairment
Vineland Social Malin (1968); expanded by 0‑15 Culturally It gives a comprehensive It may need revision in tune with
Maturity Scale Bharatraj (1992) appropriate profile of adaptive the changing concepts of adaptive
adaptive behavior behavior
behavioral
skills
Progressive Raven (2003); Indian norms 11 years to adults Nonverbal It assesses the general Not suitable for illiterates and
matrices are available (Deshpande intellectual abilities trough persons at the lower end of ID
a. Standard et al., 2002) form comparisons and spectrum. It does not yield IQ
analytical reasoning. This scores.
test is culture-fair to a
large extent
b. Colored Raven (2003); 5‑11 years It gives percentiles Same as above
Gessel’s Drawing Verma et al. (1972); 15 months to Performance It is a reliable It is not a valid test for the children
Test Revalidated by 8 years test screening test of mental who have not attended school or
Venkatesan (2002b)* developmental have no experience with a pencil
or children with specific finger
dexterity problem
Bhatais’s Battery of Bhatia (1955) 11 years and above Performance Many subscales are It measures IQ above 70; hence,
Performance Test of test indigenous not suitable for use with suspected
Intelligence cases of ID
Wechsler Wechsler (2003) 6‑16 years and 11 Contains both It has updated areas of Time consuming and costly
Intelligence Scale months verbal and assessment in accordance
for Children ‑ fourth performance with the development of
edition (India) scales children in India
The table is adapted from Arya, S., Kishore, M.T., Ranga, S., Bisht, J. Current Status of Intelligence testing in India: Perspectives on disabilities. NIMH News
Letter, 2005; 18 (2 and 3), 19‑23. ©NIEPID (formerly, NIMH), Secunderabad. *Revalidation/reappraisal details could be found in Madhavaram, T.K. Intelligence
testing and its implications for disability evaluation in individuals with mental retardation. Psychol Stud 2011;56(3):289‑294. DOI 10.1007/s12646‑011‑0093‑y.
DST – Developmental Screening Test; IQ – Intelligence quotient; ID – Intellectual disability

Appendix 3: Tests indicated in case of intellectual disability and comorbid conditions

Type of disability Screening Adaptive behavior Global Intelligence Scale (in the order as below)
ID alone DST VSMS BKT
ID and VI DST VSMS Prorate the IQ based on MISIC verbal scales
BKT
ID and HI GDT and SFB VSMS Prorate the IQ based on MISIC performance scales
BKT is not suitable because of high loading of verbal and language items
ID and CP (or, DST and GDT VSMS BKT; Profile analysis will help identify specific effect of motor deficits
locomotor disability) on test performance
Prorate the IQ based on MISIC verbal scales
Source: Kishore MT. Trends in intelligence testing of persons with mental retardation and its implication for certification of disability and service provisions. An
unpublished study funded by the Indian Council of Social Sciences Research, 2011. DST – Developmental Screening Test; VSMS – Vineland Social Maturity
Scale; GDT – Gessel’s Drawing Test; SFB – Seguin Form Board; BKT – Binet–Kamat Test of Intelligence; MISIC – Malin’s Intelligence Scales for Indian Children;
ID – Intellectual disability; VI – Visual impairment; HI – Hearing impairment; CP – Cerebral palsy
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CLINICAL PRACTICE GUIDELINES

Clinical Practice Guidelines for Assessment and Management of

INTRODUCTION 32/1000, depending on the case definition, methodology,

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Detailed history, examination

Prenatal onset Paranatal onset Postnatal onset

Significant dysmorphism, Familial nature with Metabolic Familial, no CNS malformations,

Chromosomal Monogenic Syndromic IEMs- Monogenic non

Figure 1: Finnish approach

Kishore, et al.: Clinical practice guidelines on intellectual disability

History taking Examination of major organ systems

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Table 3: Physical investigations in intellectual disability

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Table 5: Summary of medical interventions

behaviors may be an atypical presentation of psychiatric Nonpharmacological management

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Table 6: Summary of pharmacological treatment options

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• Emphasize on self‑advocacy by creating awareness SUGGESTED READING

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Appendix 1: Key questions to aid assessment, intervention, and treatment plan

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Appendix 3: Tests indicated in case of intellectual disability and comorbid conditions

Staying in touch with the journal

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