Parents of children on the Autism Spectrum

Getting a diagnosis; assessment and being told

The form of assessment varied considerably. In some cases, GP’s referred children to a paediatrician or CDC (child development centre) where they would be diagnosed during one appointment.

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Questions were commonly asked about the family history, the children were observed and information was collected from nursery or school. Often several different health professionals were involved and structured assessments such as the PDDAG (Pervasive Development Diagnostic Assessment Group), ADIR (Autism Diagnostic Interview Revised), and ADOS (Autistic Diagnostic Observation Scale) were used.

Other parents had a series of appointments with various health professionals including speech therapists, educational psychologists, community paediatricians; a few parents attended residential assessment centres. The residential centres offered a very comprehensive process of assessment but those parents who followed this route talked about how difficult it was to take such a lengthy period of time away from their other children. Those parents who already had a child diagnosed with Autistic Spectrum Disorder (ASD) found the diagnosis for the second child a quick process which did not involve the same procedures as with the first child.

Getting the diagnosis
Some children were given a series of diagnoses before being diagnosed with autism. These included dyspraxia, dyslexia, PDDNOS (pervasive developmental disorder not otherwise specified) and pragmatic semantic disorder. As one parent commented,

“Matt was diagnosed eventually with PDDNOS which is basically on the autistic spectrum with a few boxes not checked. I think he probably made eye contact or something like that at one of the assessments.”

Some parents clearly felt that their children could have been diagnosed much earlier and this was frustrating in terms of getting the right support. Some parents felt that they were being blamed for their children’s developmental delay or unusual behaviour (see ‘Feelings about diagnosis’).

One parent thought that it was difficult to diagnose autism because often the children behaved well during appointments and so professionals could not get a clear sense of the children. Some children had atypical behaviour which also made diagnosis problematic although parents thought that they would rather be kept better informed during the process. One boy was diagnosed with atypical autism because he had delayed speech but now those involved with his care accepted that he had Asperger syndrome.

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Parents told very different stories about how they got a diagnosis for their children and they also described different feelings about receiving the news and this is discussed in ‘Feelings about diagnosis’.


Last reviewed January 2015.
Last updated November 2012.
 

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