Training Module for AIIMS Modified INCLEN Diagnostic Tool for Autism Spectrum Disorder (INDT-ASD)
Learning Objective
To describe the core symptoms of autism spectrum disorder
To clinically evaluate a child with suspected autism spectrum disorder using AIIMS modified INDT ASD tool for autism spectrum disorder
Introduction
Autism is a neurodevelopmental disorder characterized by impairment in
Reciprocal socialization
Qualitative impairment in communication
Restrictive and repetitive behaviour
DSM-5 diagnosis of autism spectrum disorder includes
Qualitative impairment of social interaction, social communication
Restrictive and repetitive behaviour
Symptoms of Autism Spectrum Disorder
Deficits in social emotional reciprocity
There may be lack of joint attention in the form of inability to share his/her interest by pointing to parents the object of interest like a dog/cat/flower/train
There may be lack of initiation of conversation to talk about his interests or achievements
There may be lack of sharing of his/her emotions, happiness or distress with parents
There may be lack of initiation of conversation or lack of adding significant content for the conversation to continue.
Child may prefer to play alone and not mix up with other children
There may be an impairment of involvement in rule based games
Deficit in Nonverbal Communicative Behaviour
Poor integration of verbal behaviour and non verbal behaviour
They may have poor eye contact
There may be impairment of use of appropriate gestures during social interaction
There may be total lack of facial expression while interacting with parents or strangers
Poor Eye Contact
Deficits in developing, maintaining and understanding of relationship
There may be lack of enjoyment of company of other children
There may be lack of friends with whom he/she can chat, share or play together
They may play with children of younger or older age group
There may be lack of imaginative play
Stereotyped, Repetitive Motor Movement or Speech
Child may repeat certain words or phrases regardless of the meaning that he/she has heard
Child may repeat few words or phrases he/she heard in television regardless of meaning or context
He/she may have pronoun reversal with replacement of “I for me” and “me for you”
He/she may speak out of context or irrelevantly
Child may show excitement by flapping his hands, wring his hands, rocking, spinning or making some unusual finger or hand movement
Video (Hand Stereotypies)
Video (Echolalia)
Other symptoms of Autism
Insistence on routines: child unreasonably insist on doing things in a particular way and/or become upset if there is any change in the daily routine
Highly fixed or restricted interest: Child may prefer to play with a particular part of a toy/object rather than the whole toy/object
Sensory symptoms:
Child may show indifference or exceesive reaction to pain
He/she may show abnormal interest in feeling the textures
He/she may show abnormal reaction to sounds by covering their ears
He/she may have excessive smelling or touching of object in unsual manner
He/she may have fascination with lights or moving objects
Social (pragmatic) communication disorder (SCD): children with marked deficit in social communication but whose symptoms otherwise do not meet the criteria for autism spectrum disorder must be considered for SCD
Intellectual disability (ID): It is essential to differentiate intellectual disability from autism spectrum disorder (ASD) although both can co exist and the current DSM-5 gives the liberty to label “ASD with ID”
Landau Kleffner syndrome: children with autism spectrum disorder with later age at onset of regression must always be considered for a possibility of landau-kleffner syndrome
Undiagnosed hearing impairment
DSM-IV Criteria for Autistic Disorder
Qualitative impairment in social interaction (2 out of 4 item)
Qualitative impairments in communication (1 out of 4 items)
Restricted repetitive and stereotyped patterns of behaviour, interests and activities (1 out of 4 items)
A total of 6 out of 12 items will be called autistic disorder
DSM-5 Criteria for Autism Spectrum Disorder
Persistent deficits in social communication and social interaction
Restricted, repetitive patterns of behavior, interests,or activities
Symptoms must be present in the early developmental period
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay
Symptoms of autism spectrum disorder are specific (NOT pervasive) to impairment in social interaction and communication with presence of restrictive, repetitive behaviour
There are concerns of PDD-NOS being labelled as mild developmental disorder and Asperger as ‘odd’ behaviour.
Overuse of PDD-NOS leads to diagnostic confusion and may contribute to epidemic of autism
Symptoms of autism spectrum disorder are not salient among children with Rett syndrome
Developmental regression in autism spectrum disorder has a wide range in timing and nature of loss of skills, hence precise existence of childhood disintegrative disorder has been challenged by many author worldwide.
Literature has suggested that there is a considerable overlap between high functioning autism and Asperger syndrome questioning the need for separate category for the latter.
INDT-ASD Diagnostic Tool (DSM-IV Based)
The diagnostic accuracy [AUC=0.97 (0.93, 0.99); P<0.001]
Juneja M, Mishra D, Russell PSS, Gulati S, Deshmukh V, Tudu P, et al. INCLEN Diagnostic Tool for Autism Spectrum Disorder (INDT-ASD): development and validation. Indian Pediatr. 2014 May;51(5):359–65.
Clinical Consensus Criteria
Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction
Deficits in nonverbal communicative behaviours used for social interaction; ranging from poorly integrated verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behaviour to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases)
Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes)
Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
Other Criteria
Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
Symptoms together limit and impair social, occupational and other areas of daily functioning.
These disturbances are not better explained by intellectual disability or global developmental delay.
Development of AIIMS Modified INDT ASD Tool for Diagnosis of Autism Spectrum Disorder
Development and Validation of DSM-5 Based AIIMS Modified INDT ASD Tool
Aim of the study was to develop and validate AIIMS modified INDT-ASD tool for autism spectrum disorder (ASD) against gold standard DSM 5 criteria for diagnosis and categorization of severity of ASD in children aged 1-14 years
Conducted in Child Neurology Division, Department of Pediatrics, AIIMS, Delhi
(Prof Sheffali Gulati) in collabartion with INCLEN group
Development of
AIIMS Modified INDT-ASD Tool
A team of national experts reviewed the pool of questions (Focused group discussion) in the new tool
Pediatric neurologist
Clinical psychologist
Child psychiatrist
Pool of items were selected by investigator using modified Delphi method
“unsure” was considered “no” for statistical purpose
Combination of question and observation
Each question has been labelled as autistic or non autistic response
Time taken: 25-30 min
AIIMS Modified INDT ASD Tool
AIIMS Modified INDT ASD Tool
DSM-5
Section A
Number of items/questions
Social communication and interaction
Social emotional reciprocity
8
Non verbal communication
4
Relationships
3
Restricted, repetitive pattern of behaviour, interest and activity
Stereotyped movement or speech
7
Routines
1
Fixed interests
1
Sensory symptoms
4
Total number of items
28
Section B
Analysis of section A
Summary of assessment
9
Final Interpretation
Section A: 3 items each from A1, A2, A3
Presence of yes on question 3 and 4 mandatory
Final impression:
ASD present
No ASD
Comparison of INDT ASD and AIIMS Modified INDT ASD
Item
INDT ASD
AIIMS modified INDT ASD
Social interaction
4 items
3 items
Social communication
4 items
Restrictive and repetitive behaviour
4 items
4 items
Sensory symptoms
Absent
Present (1 item) out of 4 items in restrictive repetitive behaviour
Onset in early childhood <3 years
Absent
Present (1 item)
Impairment of daily functional activity
Absent
Present (1 item)
Total number of items
12
9
Total number of questions
29 (Section A) +12 (Section B)
28 (Section A)+7 (Section B)
Diagnosis of ASD
6 out of 12 criteria for diagnosis of autistic disorder
7 out of 9 criteria needed for diagnosis of autism spectrum disorder
Other diagnosis made using the tool
Pervasive developmental disorder- Not otherwise specified, Asperger disease, Rett syndrome
All clubbed under umbrella diagnosis of “Autism Spectrum Disorder”
Diagnostic Performance of AIIMS Modified INDT ASD Tool
Diagnostic Performance of AIIMS Modified INDT ASD Tool
Gold standard
DSM 5 diagnosis of ASD (n=76)
Gold standard
DSM 5 diagnosis of No ASD (n=76)
Total cases
AIIMS modified INDT ASD tool: ASD present
74
8
82
AIIMS modified INDT ASD tool: ASD absent
2
68
70
76
76
152
Sensitivity: 97.4% [90.9% to 99.3%]
Specificity: 89.5 % [80.6% to 94.6%]
Positive Predictive Value: 90.2% [81.9% to 94.9%]
Negative Predictive Value: 97.1 % [90.2% to 99.2%]
Diagnostic accuracy: 93.4% [88.3% to 96.4%]
Administration of AIIMS modified INDT ASD Tool for Autism Spectrum Disorder
Content of Tool
S. No
Item
Function
Number of questions
Interpretation
1
Section A1a
Social emotional reciprocity
8 questions
Mandatory item
Section A1b
Non verbal communication
4 questions
Mandatory item
Sections A1c
Relationships
3 questions
Mandatory item
2
Section A2a
Stereotyped movement or speech
7 questions
At least 2 items out of 4 items from A2a to A2d
Section A2b
Routines
1 question
Section A2c
Fixed interests
1 question
Section A2D
Sensory symptoms
4 questions
AIIMS Modified INDT-ASD Diagnostic Tool
The tool has two sections:
Section A has 28 symptoms/items
Section B contains 8 questions for analysis and interpretation of INDT ASD tool
It takes approximately 45-60 minutes to administer the instrument and score.
A trichotomous endorsement choice (‘yes’, ‘no’, ‘unsure/not applicable’) is given to the assessor/ interviewer.
INDT-ASD Diagnostic Tool
Clinician/psychologist has to make behavioral observations on the child and score the item as well.
For any discrepancy in parental response and interviewer’s assessment, it is indicated for each question whether parental response or assessor’s observation should take precedence
Each symptom/item is given a score
‘1’ for ‘Yes’
‘0’ for ‘No’ or ‘unsure/not applicable’
Instructions for Evaluation
Primary caregiver must be present with the child
These behaviors are to be assessed in the context of children of same age
Explain to parents that the answers should be based on the child’s behavior most of the time
Follow the age directions given along with the question. For questions where no age cut-off is given, they should be asked for all children i.e. all ages (1-14 years)
Ask the questions verbatim
Question can be repeated if the respondent cannot understand
Still, if the respondent cannot understand, give example for the particular behavior; No further elaboration is allowed
The questionnaire should be supplemented by observations for the suggestive behavior in the child throughout the assessment.
Observe the behavior of the child during the entire interview to confirm the presence or absence of a particular behavior (First ask, then observe if observation is discrepant, then re-ask the question and recheck the observation also).
When there is discrepancy between parental response and your observation, * indicates whether parent report or observation should take precedence, and marked accordingly
When parent’s response is “Unsure”, your observation of the particular behaviour will be given weightage even when asterisk (*) is on parental response. In case your are also unable to observe the behavior, then only mark the response as “Unsure”
Some criteria have multiple questions. While scoring, consider the criteria fulfilled even if response to any one of the questions is abnormal. For example, the criterion A1a is considered fulfilled if any one of I to viii is autisitc in the child
Tool Interpretation
Final Interpretation
To diagnose as autism spectrum disorder (ASD: Present) (Section B: Question 1 to 4)
All sections A1a, A1b, A1c must be fulfilled
Atleast 2 out of 4 items from section A2a, A2b, A2c, A2d must be present
Onset must be in early developmental period
These symptoms must have resulted in impaired functioning
Example
Case Scenario
3 year boy brought with complaints of poor eye contact and delayed speech.
He was born of non consanguineous marriage, first in birth order. His neonatal period was eventful, was born by normal delivery with birth weight of 3.2 Kg, cried immediately at birth and was discharged the next day.
He subsequently attained age appropriate motor milestones but his speech was delayed.
Parents have often observed him to be “in his own world”, often not responding to commands when called.
He often reacts by excessive jumping and spinning when he gets excited.
Mother has noticed that when offered a toy he does not play with it, rather spins its wheels and throws it away. He likes playing with toffee wrappers and threads. A pediatrician suspected autism spectrum disorder and referred the case for evaluation.
Motor Stereotypies
Fixation with Toothpaste
Smelling
Case 2
5 Years girl
Second child of non-consanguineous marriage
Developmentally normal till 4 years of age
Complaints of
Decline of language skills
Decreased verbalization
Not indicating basic needs
Behavioral problems over past 6 months
Absent emotional reciprocity
Lacks peer/ pretend play
Impaired sleep
Hyperactivity and aggressiveness
Motor stereotypies present
Gestural communication normal
Eye contact normal
Summary
AIIMS modified INDT ASD is developed and validated and based on DSM-5 based diagnosis of autism spectrum disorder
The tool had good psychometric properties in terms of sensitivity (97.4%), specificity (89.5%) and diagnostic accuracy (93.4%)
Present tool offers simple, physician administered, robust DSM 5 based diagnostic instrument for autism spectrum disorder among those with “suspected autism”
