Parents' experiences of getting an autism diagnosis for their child

What is it about?

Receiving a diagnosis of autism has a major impact on an individual and his/her family. The aim of this research was to gather the views and experiences of over 1000 parents in the United Kingdom, regarding the process of obtaining an autism diagnosis for their child. The results demonstrated that parents were very astute to the early signs of autism that their children were displaying, and were often the first to detect these. Despite this, parents tend to wait around a year from when they first had concerns about their child’s development to the point at which they first approached a health professional (usually their General Practitioner) about these concerns. Once parents sought professional help, they tended to experience a delay of around 3.5 years before their child’s autism diagnosis was confirmed. However, this varied: there was an indication that children with autism and learning disabilities tended to get diagnosed quicker, whereas children with autism who were more able (intellectually and verbally) appeared to experience even lengthier delays. Asking parents how satisfied they were with the diagnostic process as a whole, just over half of parents were dissatisfied. The support (if any) that was provided to parents after their child was diagnosed was deemed particularly unsatisfactory, and this was highlighted as an area of major concern amongst parents. Clearly, there is much that can be done to improve the autism diagnostic process – listening to the views of parents is the first step. Watch a video about this work: http://aut.sagepub.com/content/20/2/153/suppl/DC1

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