Parent engagement in autism-related care: a qualitative grounded theory study

Figures & data

Figure 1. Time spent navigating intervention at point of interview, since first concern of autism.

Figure 2. The process of ‘Making your own way’ the within context of a parent’s lifeworld.

Table 1. Aspects of the process of adapting emotionally.

	Examples of difficulties
Earlier aspects
Accepting the possibility of autism	I [father] would convince myself that … I’d read something about autism that, you know, in retrospect, seemed to square exactly with her behavior. And then I would just sort of try and find those exceptions. And I’d think, ‘Oh! But, you know, she laughed that one time. Kids with autism don’t have a sense of humour.’ Or, you know, ‘She hugged me. So, kids with autism aren’t affectionate. So it couldn’t be autism.’
Releasing culturally-based hopes and expectations for the child’s future	But for [my husband and me], when we’ve talked about it since, we grieved for the kids we thought we were getting. You know, you think you’re getting your neurotypical, normal children that are going to run and play. You have this idea in your head of how they’re going to grow up, and the things that you’re going to do with them. And when somebody tells you, ‘Oh, they might have autism … ’ all those things are sort of ripped away from you. And you have to grieve those pictures in your head that you’re never going to be able to do with them. Or, that’s what we thought then. I mean, that’s not really the reality of it. So we went through this starting of a grieving process.
Accepting an uncertain and fearful future for their child	The hardest part has always been fear for his future … It’s an ongoing thing … what’s going to happen to him when I can’t be there anymore? Fearing that nobody can give him what he needs if I’m not there to advocate for him and be his voice, because he’s non-verbal. So that’s a huge fear. Fear of him possibly being abused, or put into a situation where he can’t speak for himself, and something happening. And how would anybody ever know?
Later aspects
Surviving the emotional strains of navigating	If I do the best I can, at the end of the day I just have to be at peace with that. Because if I don’t take care of myself, they’ve got nothing, because I’m all they’ve got. So I have to be at peace with what I’m able to do. And if I have a bad day where I don’t do much – oh well, so does everybody!  …  I give myself permission to not be perfect, I guess.
Redefining one’s roles and self according to new occupational requirements	You know, they say you can advocate for your child – you’re your child’s best advocate. Well to me, advocate just is another word for bitch. Because as soon as you start advocating for your child, well then you’re seen as that parent: ‘Oh, here comes that parent again.’

Figure 3. Hypothetical typical long-term trajectory of readiness for involvement.