Parents experiences with deaf children with autism

Part of the Diagnostic Instruments for Autism in Deaf Children (DIADS) study

Diagnostic Instruments for Autism in deaf children (DIADS) is a research project funded by the Medical Research Council with Deaf – Child and Adolescent Mental Health Services (CAMHS). SORD was involved as we wanted to explore parents’ perspectives of knowing or suspecting that their child was either deaf, autistic or both.


Research aims

We carried out interviews with parents who were hearing and Deaf all over the UK to ask them about when they knew that their child was perhaps deaf or autistic, or both, and what the key factors were that indicated this. We also asked what challenges there were in discussing these thoughts with professionals while their children were young and whether they were heard, or ignored, or whether parents felt that they knew more than they did.

The interviews revealed that the parents strongly felt that their knowledge was more concrete but there were barriers in discussing this with professionals who wanted to wait until their child was older.

Our findings

Parents said they were conscious of their child maybe not reaching developmental milestones as their child was either deaf or autistic. They were not sure if their child’s behavior was always linked to their deafness or their autism – it was difficult to define. Parents’ held a strong view that they knew best and thus should be heard more by the professionals and not wait for a formal diagnosis to confirm their knowledge.

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