Parents of children on the Autism Spectrum

Getting a diagnosis of Autistic Spectrum Disorder (ASD); referrals

There are diagnostic differences between conditions on the autism spectrum; people may receive a diagnosis of autism or Autistic Spectrum Disorder (ASD), high-functioning autism (HFA) or atypical autism or Asperger syndrome. Alternatively, they may be given a diagnosis of pervasive developmental disorder - not otherwise specified (PDD-NOS) or semantic pragmatic disorder* Children and adults on the spectrum often have similar difficulties and can have similar support needs.

The parents we talked with had different experiences of getting a diagnosis of autism or Asperger syndrome for their children depending on where they lived and the severity of their children’s autism. Some parents raised concerns with their GP about their children when they were very young, were referred to a paediatrician, psychologist or child development centre (CDC) and received the diagnosis within six months. Other parents described raising their concerns with their health visitor or GP only to be told that everything was fine and their children would ‘catch up’. For these parents, the process of diagnosis took years and some children were not diagnosed until adulthood.

Unexpected referrals
A few parents had no concerns about their children and were surprised when a nursery or school teacher, SENCO (Special Educational Needs Co-ordinator), family friend, or health visitor suggested that they seek a referral for their child. One mother was seeing a counsellor for depression and the counsellor suggested that her son could have Asperger syndrome. Another mother moved house and her children were immediately identified as having difficulties in their new school. Some of the parents with more than one child on the spectrum described how they had been so focused on their first child they did not notice that their second children were displaying characteristics of autism.

These parents had not thought there was anything out of the ordinary about their children’s development and while the children were slightly delayed, they thought they would just grow out of it and walk or talk in their own time. As one mother said, “I didn’t compare Joseph to anyone really; to me he was just Joseph” and she was surprised when a friend suggested he might have autism. Another mother had not asked the GP for advice about her son because it seemed silly to go and say that she was worried because her son was so naughty.

Asking for help
Parents either discussed their worries with their GP or health visitors or were referred to specialists through nursery or school. One mother described how she knew that there was something different about her son from when he was born but only went to the GP when he began to experience “social issues” at school when he was about seven years old. Another mother read a leaflet in Tesco when her daughter was 28 and thought it described her daughter exactly.

The length of time between raising initial concerns (either by the parents or by relevant professionals) and getting the diagnosis also varied considerably among the parents. Some parents were repeatedly told that there was nothing wrong with their children and they were being neurotic parents. This was frustrating and upsetting and a few parents did not know what to do or where to go.

A few parents described mistakes made during the process of diagnosis, such as reports not being written or sent, which further delayed getting the diagnosis. Some of these parents read reports written years before diagnosis suggesting that the children were on the autism spectrum. Many parents with worries about their children’s development began to do their own research into possible answers (see Information’) and it became clear to some of them that their children were on the autism spectrum before they received the diagnosis.

A few parents paid for a private assessment because they were frustrated by the lack of progress in identifying the reasons for their children’s developmental delay. Other parents asked organisations such as the National Autistic Society and Young Minds for advice on how to go about getting a diagnosis. They were advised to contact local psychologists who specialised in autism spectrum conditions.

* Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. Semantic Pragmatic Disorder is a linguistic term used to describe a set of abnormal language and communication developmental features.

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Last reviewed July 2017.

Last updated November 2012.


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