Parents of children on the Autism Spectrum

Support groups

For many parents of children on the autism spectrum, life can seem very different and distant from the experiences of many other families and it can be possible to feel that there is no way that they can ask for or expect other people to understand their experiences. Things can become easier once the child has been diagnosed but even then what is available in the way of support may be very limited.

Parents we talked to described the importance of being able to attend support groups for parents of children with autism. These groups offered a place for parents to share experiences, to get information and advice, to make friends and, in some cases, campaign for better services and provision for their children. While these groups were mostly for parents of children with autism or Asperger's syndrome, a few parents attended groups run by carers' organisations.

A lot of parents highlighted the importance of talking to other parents who had similar experiences and many had made friends with other parents through support groups. As one mother said “You don’t have to start at the beginning explaining everything and they won’t judge you, they will help”. Parents also talked about how speaking to parents who had been through the same thing offered them “a light at the end of the tunnel”. Some of the support groups also arranged activities like screenings at cinemas, swimming and bowling which parents liked because “you are with all the people that are like you” (see ‘Going out’).

A few parents we talked with had set up their own support groups because there were none in their area. Sometimes speakers were invited to meetings while at other times, the meetings were for parents to talk to each other. Speakers who were themselves on the autism spectrum were important to some parents who felt that this gave them some idea of what their children could achieve.

Some parents described how their groups had developed a more active role and they produced information packs, gained charity status and actively campaigned to raise awareness.

A few parents talked about how valuable sibling support groups were. One daughter had been on an adventure weekend and her parents described how “it’s great because it gets her away doing something that she loves doing and meeting other kids in similar situations”.

Many parents talked about how useful they found the National Autistic Society (NAS) website and some parents attended local NAS support groups or training courses, such as Early Birds and Help! which they had found useful. Online forums were also a valuable source of support for some parents. One parent described how she thought she must be the only parent in the world with a child like her son but found through forums that his fears and concerns were not uncommon.

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Some parents had not got involved with support groups for various reasons. Some parents didn't feel the need to, or hadn't thought about it. One mother differentiated between ‘chatting groups’ which she hated because the focus was always on problems and more ‘analytical’ groups which were more about providing information. One mother described an unsuccessful group of parents of newly diagnosed children which was “like AA Anonymous; my name is x and my son has autism”. Another mother thought that support groups were for “people in crisis”.

Some parents did not have groups in their areas or the groups that existed were aimed at particular groups such as children with lower functioning autism or older children or the meetings were held at times that were not convenient to them. One father found less common ground at support groups because of his son’s hyperlexia. For some the logistics of finding someone able to care for their children at home made attending meetings impossible.

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Last reviewed July 2017.

Last updated November 2012.


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