1 OASID, a New Instrument for Diagnosing Autism Spectrum Disorder in People with Multiple Disabilities Gitta de Vaan Mathijs Vervloed Harry Knoors Ludo Verhoeven
2 Overview Target population Overlap in characteristics How is ASD diagnosed in practice? Current diagnostic instruments OASID Results & psychometric properties
3 Target population People with: - A moderate, severe or profound intellectual disability (ID) - A visual impairment - Possible auditory impairment - Language: none, impaired, delayed or sign language - Motoric difficulties - Several co-morbidities Age: 5-55 years old
4 Target population Impairments in perception Cannot see and/or hear or this is impaired Miss information / cues from environment Sensory over- / understimulation More dependent on routines
5 Target population Impairments in communication Language is absent / delayed / impaired / sign language Understanding communication Perceiving / performing (non)-verbal communication Expressing thoughts / emotions
6 Target population Impairments in... Motor abilities Mobility (wheelchair bound, spastic, epilepsy, etc.) Intellectual disability
7 Overlap in Characteristics Autism Spectrum Disorder (DSM-5) A: Deficits in social communication and social interaction (now or in history) B: Restricted and repetitive patterns of behaviour, interests or activities (now or in history):
8 Overlap in Characteristics Autism Spectrum Disorder (DSM-5) A: Deficits in social communication and social interaction (now or in history) 1. Deficits in social-emotional reciprocity (e.g. social approach, back and forth conversation, sharing interests or emotions) 2. Deficits in non-verbal communication used for social interaction (e.g. abnormal eye-contact, body language, understanding gestures) 3. Deficits in developing, maintaining and understanding relationships (e.g. absence of interest in peers, sharing imaginative play)
9 Overlap in Characteristics Autism Spectrum Disorder (DSM-5) B: Restricted and repetitive patterns of behaviour, interests or activities (now or in history): 1. Stereotyped or repetitive motor movements, use of obects or speech 2. Insistence on sameness, inflexibility to routines, ritualized patterns 3. Highly restricted, fixated interests, abnormal in intensity or focus 4. Hyper- or hypo reactivity to sensory input
10 How is ASD diagnosed in practice? Pilot phase 18 participants Definititely ASD or definitely no ASD Does the person have autism? Was autism ever suspected? How was this diagnosed? Why? Why not?
11 How is ASD diagnosed in practice? Pilot phase 8 participants with no ASD 6 x never suspected never investigated Does the person have autism? 2 x suspected but never investigated Was autism ever suspected? How was this diagnosed? 6 x expert(s) certain of ASD based on video s Why? Why not?
12 How is ASD diagnosed in practice? Pilot phase 8 participants with ASD 2 x extensive investigation 1 x psychiatric investigation 1 x one checklist 1 x based on suspicion 3 x unknown Was autism ever suspected? Does the person have autism? How was this diagnosed? Years: Why? Why not?
13 How is ASD diagnosed in practice? Larger study 60 participants No ASD 17 participants ASD 15 participants Doubt 28 participants
14 How is ASD diagnosed in practice? Larger study No ASD (17 participants) 7 x never suspected 2 x strong dependence on rituals and structure due to visual impairment
15 How is ASD diagnosed in practice? Larger study ASD (15 participants) 11 x investigated psychiatrist / psychologist / ASD centre 1 x a checklist years: 1974 (confirmed in 1999) x investigation is planned 3 x unknown
16 How is ASD diagnosed in practice? Larger study Doubt (28 participants) 5 x investigated but doubt remains checklist, psychiatric / psychological assessment 4 x unknown 7 x never investigated Strikingly little eye contact, but may have other causes Charactertics of ID overlap with ASD behaviors I don t know where ASD begins and where it ends
17 How is ASD diagnosed in practice? In summary: Elaborately (in only few cases) Too many doubt cases Diagnostic investigation does not always clarify It is not Done once but never repeated With insufficient means
18 Current Diagnostic Instruments Are not validated for people with ID and / or sensory impairments Do not have norms for people with ID and / or sensory impairments Do not take sensory impairments into account
19 Current Diagnostic Instruments M-CHAT 23 items, 1 point per positively scored item Score of 0 2: no follow up necessary Score of 3 6: risk of ASD should be further investigated Score of 7 +: Definitely at risk for ASD
20 Current Diagnostic Instruments Does your child ever use his/her index finger to point, to indicate interest in something? Does your child look you in the eye for more than a second or two? Does your child ever seem oversensitive to noise? (e.g., plugging ears) Does your child imitate you? (e.g., you make a face-will your child imitate it?) Does your child respond to his/her name when you call? If you point at a toy across the room, does your child look at it? Have you ever wondered if your child is deaf? Does your child understand what people say? Does your child sometimes stare at nothing or wander with no purpose?
21 Behavioral overlap between ASD and people with multiple disabilities Many people are not diagnosed in practice In practice, diagnosis is often done with insufficient means Existing instruments are not suitable for people with multiple disablities A new instrument, specifically for this group, is needed
22 OASID Observation of Autism in people with Sensory and Intellectual Disabilities
23 OASID Play session Use of toys and games Observation Experimenter in play session with participant Assessment recorded on video Scored afterwars with video Semi structured Communication adjusted to (dis)abilities of participant Level of play adjusted to participant Speed of assessment adjusted to participant Participant can bring own toy or amusement object Duration: 25 minutes 1 hour
24 OASID Play session 5 tasks with different toys / games ASD typical behaviors are provoked / triggered Adjusted to the participant
25 OASID Example Instructions to experimenter Trigger joint attention 1. Look at participant, toy, participant 2. Repeat with surprised face 3. Repeat saying: Ohhh 4. Play with toy in participants sight, 1. Using hand-under-hand method, bring participants hand to object. 2. Repeat, but move your hand over toy 3. Repeat but let participant make contact with toy 4. Play with toy also using participants hands
26 OASID Scoring 40 questions Multiple choice: score of 0, 1, 2. Each choice supported with elaborate descriptions of possible behaviors Higher score more ASD typical behavior Adjusted to participant Not: Does the person make eye-contact? But: Does the person initate contact with experimenter?
27 OASID Example Scoring sheet: At which step did the person share your attention? 0: Immediately, or at step 1. 1: Step 2 or 3 2: Step 4 or not at all
28 OASID Example Scoring sheet: Does the person share his/her attention? 0: He/she switches his attention twice during the task. 1: He/she switches his attention once during the task. 2: He/she does not switch his attention during the task. *Switching attention is moving attention from the object to the experimenter or from experimenter to object. *Attention for an object or person can be shown by looking, touching, holding or talking about it/him/her.
29 OASID Scoring Scale A Social Behavior and Communication - Reciprocity - Non-verbal Communication - Relationships Scale B Repetitive and Stereotyped Behavior - Stereotyped and repetitive movements - Insistence on sameness - Restricted and fixated interests - Hyper- or hypo reactivity to sensory input
30 OASID Scoring Score on OASID No autistic symptoms on both scales No autistic symptoms on one scale, mild symptoms on other scale No autistic symptoms on one scale, severe symptoms on other scale Mild autistic symptoms on both scales Mild autistic symptoms on one scale, severe symptoms on other scale Severe autistic symptoms on both scales Interpretation No ASD No ASD Mild ASD Mild ASD Severe ASD Profound ASD
31 Results & psychometric properties Pilot study with 18 participants Expert consensus served as gold standard for ASD diagnosis All videos were scored by 2 or 3 raters Two additional instruments to assess validity convergent validity (PDD-MRD = ASD in ID checklist) divergent validity (disturbed attachment checklist)
32 Results & psychometric properties Results pilot study Reliabilility Substantial to good inter-rater reliability (Weighted Kappa = 0.75; ICC = 0.69) Good to excellent internal consistency of scales social behavior and communication: 0,94 repetitive and stereotyped behavior: 0,75
33 Results & psychometric properties Results pilot study Validity OASID scored in line with expert consensus Moderate convergent validity strong significant correlation with PDD-MRS Good divergent validity moderate insignificant correlation with attachment list
34 Results & psychometric properties Larger study (60 participants)
35 Results & psychometric properties Larger study (60 participants) Intra-rater reliability Excellent (Kappa = 0,90) Inter-rater reliability Good (Weighted kappa / ICC = 0.63) 14 items had an ICC below 0.50 Deleting them negatively influenced internal consistency Internal Consistency Good to Excellent Cronbach s Alpha: 0.91, 0.74
36 Results & psychometric properties Larger study (60 participants) Construct Validity Good divergent validity: Low correlation with attachment scores Moderate convergent validity, low correlation with PDD- MRS Predictive Validity 18 of 60 participants assessed by 2 experts OASID scored in line with expert consensus Strong significant rank correlation
37 Summary There is behavioral overlap between ASD and people with sensory and intellectual disabilities. Current diagnostic practice does not use proper means to support diagnoses of ASD Diagnostic instruments do not take sensory imapirments (and ID) into account OASID was developed to diagnose ASD in people with sensory impairments and ID First two studies on OASID indicated both reliability and validity.
38 Future research Differentiating characteristics of ASD vs No ASD How is stress related to autistic behavior? Diagnostic reasoning in diagnosing people with sensory impairments and ID How does clinical pratice respond to OASID results? Testing OASID on a larger group?
39 Gitta de Vaan