Professor Elisabeth Hill leads study on autism diagnosis in UK

Parents in the UK are waiting up to three and a half years to receive a diagnosis that their child has autism.

A new study by researchers from Goldsmiths and City University found that 52 per cent of parents were dissatisfied with their experience of their child’s diagnosis; despite autism being a widely recognised disorder, by both parents and professionals.

This delay in diagnosis prevents children from receiving essential support during their development - impacting their learning, speech and social behaviour and placing significant stress on families. 

More than 1000 parents, who received a diagnosis of Autism Spectrum Disorder (ASD) for their child in the past 15 years, were surveyed to understand the experiences of autism diagnosis in the UK.

Professor Elisabeth Hill, Goldsmiths’ Department of Psychology said:

“This study illustrates the failings in the NHS to adequately support families who have a child with autism or Asperger’s syndrome.

“Poor or slow diagnosis places enormous stress on the family and can often hinder the support the child needs, especially at school.”

Key findings from the Experiences of autism diagnosis study:

• The average delay between parents first contacting a healthcare professional and receiving a diagnosis was 3.6 years.
• 52 per cent of parents were dissatisfied with their experience of their child’s diagnosis.
• 84 per cent of parents found the diagnostic process stressful
• Only 21 per cent of parents received a direct offer of help/assistance during or following the diagnostic process.

Several factors predicted parents’ overall levels of satisfaction with the diagnostic process, including:

• time taken to receive a diagnosis
• satisfaction with the information provided at diagnosis
• the manner of the diagnosing professional
• the stress associated with the diagnostic process, and
• satisfaction with post-diagnostic support.