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Diagnostic Instruments for Autism in Deaf children’s Study (DIADS)

1 in 1000 3 year old children in the UK have permanent deafness, rising to 2 in 1000 for 9-16 year olds (Fortnum et al, 2001).  Research has shown that about a third of deaf children have visual difficulties or a physical, motor or intellectual disability (Holden-Pitt & Albertorio, 1998).  Autism Spectrum Disorder (ASD) are more commonly diagnosed in deaf children as compared to hearing children (Jure et al, 1991), particularly in relation to some of the causes of deafness such as rubella, cytomegalovirus and CHARGE Syndrome (Chess, 1977; Wachtel et al, 2007).

There are currently no suitable assessments for Autism in deaf children; which could be misleading and result in misdiagnosis.   90% – 95% of deaf children have hearing parents, many of these children may not learn sign language until later life, and they may have a language delay which mirrors a trait of autism.

DIAD’s modified three different autism assessments:

  1. SRS-2 – Social Responsiveness Scale – 2; parent self-reported questionnaires.
  2. ADi-R – Autism Diagnostics Interview – revised; semi structured interview with parents.
  3. ADOS-2 Autism Diagnostics Observation Schedule Edition 2; Play based session with a child and a clinician.

These assessments were modified using the knowledge and experience of 39 international experts who work with deaf children with autism.

The SRS-2, ADOS-2 and ADIR have been translated into British Sign Language using the blind translation methodology.

We wanted to find out if these three assessments can detect deaf children with ASD and deaf children without ASD.  We have recruited 260 families to take part in the research:

  • 65 – deaf children without ASD
  • 65 – deaf children with ASD
  • 65 – hearing children with ASD
  • 65 additional deaf children without ASD to do the screening assessments.

Recruitment for the study has been completed and we are in the process of writing up our findings. To find out more about the results you can watch this video:

If you would like further information regarding DIADS, visit the following sections of our website:

Collaborators

Prof. Barry Wright, Chief Investigator, University of York Helen Phillips, Trial Coordinator, Leeds and York Partnership NHS Foundation Trust Prof. Ann Le Couteur, Consultant, Newcastle University Jenny Sweetman, Research Assistant, Leeds and York Partnership NHS Foundation Trust Natalie Day, Leeds and York Partnership NHS Foundation Trust Professor Helen McConnachie Professor of Child Psychology, University of Newcastle Alice Brennan, Leeds and York Partnership NHS Foundation Trust Ameila Ralph-Lewis, Research Assistant, Leeds and York Partnership NHS Foundation Trust Professor Alys Young, Expert in deafness and qualitative researcher, University of Manchester