Diagnostic Instruments for Autism in Deaf Children Study - DIADS

Up to 4% of people who are deaf may have autism or another autism spectrum condition (ASC). However, this can be hard to spot because many of the tools used to diagnose autism were never designed with deaf people in mind. For example, some questions on the Autism Diagnostic Interview - Revised (ADI-R), a tool used by clinicians and researchers, will ask about how a child responds when someone calls their name and the autism diagnostic observation schedule uses a toy telephone to examine make believe play. 

The aim of this project is to develop and test a set of tools that will help to identify and diagnose autism in deaf children. The researcheres plan to do this by adapting some of the existing measures of autism, so that they are fair tests that are accessible to deaf and hearing parents and can be used effectively with deaf children. This will be achieved with the help of deaf and hearing families, experts and researchers in the fields of deafness and autism, and organisations such as the National Autistic Society (NAS) and the National Deaf Children's Society (NDCS).

The objectives are split into stages.

The first stage of the project  will  interview a range of families about deafness and autism. This will involve deaf and hearing parents of deaf autistic children. The deaf children with autism will also have a play-based assessment called the ADOS 2. This will be compared to hearing children's symptoms of autism. 

In the second stage, the newly adapted questionnaires will then be translated into British Sign Language (BSL) using a strict translation/back translation methodology. A group of translators will video the items in BSL, and then another group of translators who have not seen the original questionnaire will translate them back into English. This process will repeat as necessary. Then focus groups of deaf people will check the translations and may suggest more changes. Once there is agreement, the original authors will check final versions. 

This will help us identify and diagnose autism better in young people who are deaf. It will also make it more accessible by being available in many deaf people's first language. This will mean earlier diagnosis and earlier treatment. The researchers will develop training for National Deaf Child and Adolescent Mental Health Services and other clinicians in using the new measures for screening and assessing for autism spectrum disorders.