Adapting and validating the Autism Diagnostic Interview - Revised for use with deaf children and young people

Abstract

A Delphi consensus methodology was used to adapt the Autism Diagnostic Interview–Revised for the assessment of deaf children with suspected autism spectrum disorder. Each Autism Diagnostic Interview–Revised item was considered by a panel of nine international experts in terms of relevance and acceptability. Modifications were proposed and agreed by the expert panel for 45% of items. The pre-specified criterion for agreement between experts was set at 80% for each item. A first validation of the revised version, adapted for deaf children (Autism Diagnostic Interview–Revised Deaf Adaptation), was undertaken with a UK sample of 78 parents/carers of deaf children with autism spectrum disorder and 126 parents/carers with deaf children without autism spectrum disorder. When compared to National Institute for Health and Care Excellence guideline standard clinical assessments, the Autism Diagnostic Interview–Revised Deaf Adaptation diagnostic algorithm cut-off/threshold scores achieved a sensitivity of 89% (79%–96%) and specificity of 81% (70%–89%) for autism spectrum disorder. The alpha coefficients for each algorithm symptom domain ranged from 0.80 to 0.91, suggesting that the items had high internal consistency. Our findings indicate that the Autism Diagnostic Interview–Revised Deaf Adaptation is likely to be a useful measure for the assessment of deaf children with suspected autism spectrum disorder, although further research is needed. Lay abstract Autism assessment processes need to improve for deaf children as they are currently being diagnosed later than their hearing counterparts and misdiagnosis can occur. We took one of the most commonly used parent developmental interviews for autism spectrum disorder the Autism Diagnostic Interview–Revised and adapted it using international expert advice. Modifications were proposed and agreed by the expert panel for 45% of items; the remaining 55% of items were unchanged. We then tested the revised version, adapted for deaf children (Autism Diagnostic Interview–Revised Deaf Adaptation), in a UK sample of 78 parents/carers of deaf children with autism spectrum disorder and 126 parents/carers with deaf children without autism spectrum disorder. When compared to National Institute for Health and Care Excellence guideline standard clinical assessments, the Autism Diagnostic Interview–Revised Deaf Adaptation diagnostic algorithm threshold scores could identify those deaf children with a definite diagnosis (true autism spectrum disorder positives) well (sensitivity of 89% (79%–96%)) and those deaf children who did not have autism spectrum disorder (true autism spectrum disorder negatives) well (specificity of 81% (70%–89%)). Our findings indicate that the Autism Diagnostic Interview–Revised Deaf Adaptation is likely to prove a useful measure for the assessment of deaf children with suspected autism spectrum disorder and that further research would be helpful.

Assessing Autism in Deaf/Hard-of-Hearing Youths: Interdisciplinary Teams, COVID Considerations, and Future Directions

“…When used together, the Deaf-adapted ADOS-2 and ADI-R show excellent diagnostic specificity (e.g., reducing false positives) when relying on the autism cutoff values for both instruments (Allgar et al, 2021), thus underscoring the importance of capturing current behaviors in addition to a thorough developmental history. In summary, these studies demonstrate emergent validity to support Deaf-adapted measures of the ADOS-2 (Phillips et al, 2022) and ADI-R (Wright et al, 2022), both of which required the removal and addition of items, task modifications, and scoring modifications; these changes still require validation as a novel measure in groups with complicated medical and genetic co-occurrence. The specific works cited here (e.g., Mood & Shield, 2014; Phillips et al, 2022) have pioneered efforts in autism assessment modifications for Deaf youths who use a sign-based language modality.…”

“…In an attempt to adapt the ADOS-2 for D/HH adults with intellectual disability, Holzinger et al (2022) reported poor to excellent internal consistency, which additionally required expertise in deafness, intellectual disability, autism, and proficiency in signed languages. Finally, Wright and colleagues (2022) adapted the ADI-R for D/HH children suspected of autism with excellent sensitivity and specificity (89% and 81%, respectively). When used together, the Deaf-adapted ADOS-2 and ADI-R show excellent diagnostic specificity (e.g., reducing false positives) when relying on the autism cutoff values for both instruments (Allgar et al, 2021), thus underscoring the importance of capturing current behaviors in addition to a thorough developmental history.…”

Comparison of Diagnostic Profiles of Deaf and Hearing Children with a Diagnosis of Autism

“…These potential risk factors may also be conflated by the emergence of early indications of autism [3]. The use of existing gold-standard assessment tools delivered in sign language fails many deaf children because they are often being assessed by a person communicating in another language working with an interpreter and there are numerous linguistic, cultural and sensory differences between deaf children and hearing children, including large differences in sensory processing, language and communication (e.g., visual prosody rather than verbal prosody) [7,13,[21][22][23][24].…”

“…This study set out to contribute to this lack of information by comparing the diagnostic assessment symptom profiles of a UK cohort of autistic deaf and hearing children who had each received a clinical diagnosis of autism. The data were gathered using a validated standardised semi-structured interview undertaken with the main caregiver (parent) as part of a study adapting and validating this diagnostic measure for use in deaf children and young people [21]. Based on previous literature, we hypothesised that presentations of autism would be the same for both deaf and hearing children with some notable exceptions.…”

Commentary: Best practices and processes for assessment of autism spectrum disorder – the intended role of standardized diagnostic instruments

“…Adaptations of existing instruments for use in special populations are beginning to appear, but we must be careful about implementing new tools or procedures that have been developed based on anecdotal observations of a particular group (e.g., females), and that may only reflect the opinions of one or a few clinicians. Instead, the field will benefit from the development of empirically derived tools, based on careful and systematic research, which are more appropriately targeted and have improved diagnostic validity for certain groups of patients (Bal et al., 2020; Phillips et al., 2022; Wright et al., 2022). Modifications to typical assessment practices are also required when a child or their family do not speak the same language as the diagnostician, as standardized instruments cannot be validly administered via a translator, or when there is no living parent/caregiver who is familiar enough with the individual's developmental history to complete an interview like the ADI‐R.…”