Effect on parents: worrying about the future
Some parents worried most about what would happen to their children when they were adults. Who would take care of them? What sort of life would they have? One mother was “absolutely terrified” about the future and the worry was like a low form of depression that was with her all the time. Another said that “every parent of a disabled child feels afraid to die, afraid of what will happen after they can no longer care for their child. I think about that every day”.
- Age at interview:
- Diana, a retired nurse, and her husband have four children aged 42, 40, 37 and 28. Ethnic background/nationality: White British.
- Age at interview:
- Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.
Many parents were concerned about the lack of appropriate support. Though some of the grown up children could function at a high level in some ways, they still might forget to wash, to eat properly or organise their daily lives (see ‘Self help skills’). One mother worried about her daughter's threat to commit suicide if left alone without support.
A few parents reflected on what it meant for themselves to have a disabled child. One mother said: “I shouldn’t say and I know I shouldn’t feel it, but I think to myself ‘Oh my god, this is the rest of my life?’” Some parents had decided not to have any more children because of a concern about having further children on the autism spectrum. One couple considered gender selection because autism is less common in girls, but they decided against it.
Some parents felt physically affected by constantly having to fight, to deal with the reactions of others and, in many cases, having had to give up work to cope with the endless struggle to get the specialised help and attention that their child needed. But they also felt that they had gained considerable rewards from their children. They felt that they, themselves, had grown as people through their efforts to do the right thing for their children. The effect on relationships with family members and other people is discussed in 'Effects on relationships'
Last reviewed July 2017.
Last updated November 2010.