Parents of children on the Autism Spectrum

Factors that have helped

Parents talked about the kind of things that made their lives easier. Support groups and respite care are discussed elsewhere (see ‘Support groups' and 'Respite care’). Here they talk about the kind of support they got from friends and family, about the importance of having a good relationship with their children’s school teachers and about talking to other people.

Several parents admitted that they found it difficult to talk about their problems to people who were not familiar with the autism spectrum. They described the support they experienced from being able to talk to other people with similar experiences and how they felt that parents of autistic children could understand their problems in a way that professionals and others often could not unless they themselves had actually lived with it. Some parents had been helped by talking to adults who were on the autism spectrum which gave them an idea of the potential of their children.

Family and friends
While some parents found it difficult to involve their family or their friends in their lives, those who did get a lot of support from family members or friends found it invaluable. Some parents looked to their partners for support or talked about how they worked together as a team. One mother, for example, commented about her second husband who was not the father of her children; “My husband is my incredibly wonderful support and I don’t know what I would do without him.” Some people whose friends and family did not live nearby felt supported through keeping in touch via the internet.

Some parents were less fortunate and talked about how family members did not really understand their children or were not particularly supportive (see ‘Effect on relationships’).

Professionals
Some parents found various health or education professionals helpful. It was important that staff at school understood and were aware of their children’s abilities and disabilities. Also important was the existence of staff members who were able to establish a relationship with the child. Pre-school teacher counsellors, teachers, key workers and a community co-ordinator could all contribute to making the parent feel supported. When they didn’t, the parent could feel very isolated and desperate. Feeling confident that the school was right for their children and having a good relationship with that school was very important. Some parents had felt it necessary to remove their child from a school where they were not being supported.

Other things that help

One mother thought that for her the experience was easier to deal with because her son had always been the way he was from birth and it was “not like it happened overnight”. As she remarked “So I am used to it, it is normal for me”.

Getting information and reading about autism and people’s experiences of the autism spectrum helped many parents to understand autism and the resources available for them. This included going on internet forums and sharing experiences (see  ‘Support groups', 'Respite care' andInformation’). Many parents also found the National Autistic Society (NAS) a “great support” and several parents found courses run by the NAS, such as the Early Bird course, helpful.

Some parents talked about how they had dealt with their experiences through resilience, determination and love for their children.

As on mother commented: “you have got to get it right for the child whether it hurts you or not” and there were several comments from parents about “fighting tooth and nail” for their children. One mother said that she kept going because otherwise her son would be in a residential home and that made it worth it. Another parent thought the most helpful thing was the passage of time.

Support parents would like
Some parents talked about the kind of support that they would like but that could be hard to come by. Some parents just wanted someone to talk to, who understood what they were going through. One couple said that they would have liked more guidance to help them through the process of diagnosis so they would not have been left to struggle.

Some parents minded that there were no appropriate support groups for them in their area. Several parents talked about not being able to get babysitters who would be able to look after their child or children and so found it very difficult to go out (see ‘Effect on relationships’). More support for siblings was also discussed by some parents.

One parent whose daughter was going to university felt that there was not enough support to help to organise this, and no-one responsible for making sure she was all right and who she could turn to in need. Another parent complained that support dropped off once the children reached adulthood.

Last reviewed July 2017.

Last updated November 2012.

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