Abstract
We report a Delphi Consensus modification and first validation study of the Autism Diagnostic Observation Schedule – 2 with deaf children and young people (ADOS-2 Deaf adaptation). Validation included 122 deaf participants (aged 2–18 years), 63 with an Autism Spectrum Disorder (ASD). This was compared to a National Institute for Health and Clinical Excellence (NICE) guideline standard clinical assessment by blinded independent specialist clinicians. Results showed overall sensitivity 73% (95%CI 60%, 83%); specificity 71% (95%CI 58%, 82%), and for the more common modules 1–3 (combined as in previous studies) sensitivity 79% (95% CI 65–89%); specificity 79% (95% CI 66–89%) suggesting this instrument will be a helpful addition for use with deaf children and young people.
Highlights
The median prevalence of Autism Spectrum Disorder (ASD) internationally is reported to be 0.6% (Elsabbagh et al, 2012) and approximately 1% in the UK (Baird et al, 2006)
Thirty five international experts (UK (44%), Australia (31%), USA (25%)) were recruited to take part in the Delphi International Expert Panel (DIEP), 16 of whom identified themselves as having expertise in the use of the ADOS-2
The Delphi consensus process achieved its aims and was considered by the Independent Research Review Team (IRRT) to be a successful means of gathering expert opinion internationally
Summary
The median prevalence of Autism Spectrum Disorder (ASD) internationally is reported to be 0.6% (Elsabbagh et al, 2012) and approximately 1% in the UK (Baird et al, 2006). Hull York Medical School, University of York, York, UK 3 Newcastle University, Newcastle, UK 4 South West London and St George’s NHS Trust, London, UK population (Baron-Cohen, 2008; Hayes & Watson, 2013) They are more likely to have unusual or intense preoccupations (Bishop et al, 2006) and to engage in repetitive actions and behaviors (Goldman et al, 2009). Many deaf children can experience a reduced exposure to language development opportunities (Hall, Levin, et al, 2017) This occurs for example when a profoundly deaf child in a hearing family has no access to either sound or signing. For example deaf children without ASD may experience delayed conversational reciprocity, delay in understanding or making accurate guesses about the feelings of others or delays in sustaining same age peer relationships These types of problems are seen in ASD (Bottema-Beutel et al, 2019). This overlap of developmental presentations can lead to misinterpretation in deaf children (Wright & Oakes, 2012)
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