Parents of children on the Autism Spectrum

Information

Many parents had little or no understanding of the autism spectrum before they began to seek a diagnosis for their children. Some parents mentioned seeing the film Rainman or thinking that autism was “the kid in the corner that didn’t speak and didn’t look at anybody”. Little was known about Asperger syndrome, in particular. As one mother said; “I had never met anybody that had it or, you know, knew anybody that knew anybody that had it”.

A few parents had some idea through their experiences at work, such as teaching or nursing, and a few parents described how autism was mentioned a few years before their children were diagnosed so they had read some information prior to diagnosis. One mother had read an article about a child with Asperger syndrome and she thought “It pressed buttons with me, I kept saying there is something there but that was as far as it went at the time”.

Information at diagnosis
Information given at the point of diagnosis varied. Some parents were given the diagnosis without any information and felt “cast adrift” or “abandoned”. Some parents were given limited information and a few parents were given a comprehensive pack. One mother described getting “a whole little booklet on just anyone we could possibly turn to that was available for us, so it was really good”.

One parent described how she didn’t get much information at diagnosis but wouldn’t have been able to take it in at that point. She was given “the critical information” that detailed how her son was affected which she found valuable because autism is such a variable condition. A few other parents described giving the health professionals information because they had done so much research before getting the diagnosis.

Sources of information
Parents described using a range of sources of information, including the internet, books, going to seminars or conferences and talking to other parents. Many parents said that they particularly valued finding out about other people’s experiences through the internet and books. It was helpful to hear the experiences of other parents and adults with Autistic Spectrum Disorder (ASD). A few parents said they particularly enjoyed meeting adults who were on the spectrum through support group meetings or by going to seminars with speakers.

Books were discussed by most parents and many expressed strong views about particular books they had enjoyed reading. Some people felt that autism was better represented by fiction such as The Curious Incident of the Dog in the Night time or fiction books aimed at children. Fiction books for siblings were also discussed and some parents said that their children, and in some cases their children’s friends, enjoyed reading them. Other people recommended practical guides such as Tony Attwood’s Guide to Asperger Syndrome while other’s recommended personal experiences like Jacqui Jackson’s Multi-Coloured Mayhem.

Internet
Internet websites and online forums were recommended by many parents. One parent, for example, commented “I spent probably 22 hours out of 24 on the internet after Ben was diagnosed”. In particular, the National Autistic Society (NAS) was described as an excellent resource and starting point for finding out information; “They put you in contact with other people in your area and give you basic information”.

One mother said that “blogging is a good way of communicating and finding out because you can communicate with other people in the same position” (see ‘Support groups). A few parents cautioned that “a lot of websites were crap” and it was a case of “sifting through what is actually constructive and believable information”.

Quality and quantity of information
While some parents thought that getting as much information as possible was very important, a few parents described how they had stopped reading as much as they used to. One mother, for example, of a teenage son said that she no longer wanted to overload with information and she also cautioned that reading a lot could involve reading things that people might not want to know about.  

In addition to information, other sources of support for parents were support groups and these are discussed further in ‘Support groups.

Last reviewed July 2017.

Last updated November 2012.

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