The subsample considered in this analysis included participants from a range of socioeconomic groups and geographical (including urban and rural) locations in the UK. Demographic details of the sample are presented in Table 1. Extracts from the data are included, with the interview identifiers in parenthesis.
Three categories of parental concern were labelled from the analysis: no concern, passive concern, and active concern. The first category is self-explanatory; parents said they were not concerned about their children's development before a health professional or teacher raised concerns. Passive concern includes a small group of parents who recalled being worried about their children's development but did not seek advice or help from their GP or health visitor. The actively concerned parents were worried about their children and reported asking for help from their GP or health visitor.
Of the three parents with two diagnosed children, two were categorised as ‘no concern’ for their first child and ‘active concern’ for their second. The third parent was actively concerned about both children. The third category included parents who discussed some passive concern initially but then actively sought help. The demographic characteristics of parents in each category are mixed.
No concern pre-diagnosis
Several parents told the interviewers they had not been concerned about the child's development. One child was diagnosed just before his second birthday; others in this group were diagnosed between the ages of 5 and 8 years. This suggests that once the children began school, the differences were identified more easily. These parents expressed surprise when a health visitor or member of school staff suggested they take their children to the GP to investigate delayed development or unusual behaviours. For example, one mother thought that her son had hurt himself when a student teacher suggested she take her son to the GP. Some described how content, undemanding and, in a couple of cases, developmentally advanced their children had seemed. A few parents in this category recalled recognising something different about their children but this was interpreted as an example of the child's ‘eloquence’ or advanced development. One father commented: ‘Well I think initially we thought we had a gifted child’ (12), while another mother said ‘I just, we just as a family thought [um] that he was just a normal, very active, inquisitive little boy, you know, who was just a bit different, a bit of a loner’. (21)
Passive concern
Some parents said that they were concerned about their children's development but did not raise their concerns with health professionals. One couple in this group described shifting over time, from being passively concerned to becoming actively concerned. This couple talked about feeling concerned when their son was 18 months old but they didn't seek help until he was aged 2 years and it became more apparent to them, in comparing his development with his older sister and peer group, that he had developmental issues. The children of the remaining parents in this group were diagnosed aged 4–5 years.
Some parents remembered feeling concern for several months. For example:
‘And it wasn't until he got to about 18 months old that I realised that he wasn't really joining in with other children, wasn't talking at all, and [um] by then our second child was on the way as well and just thought he is so easy, so easy going and so content with his own thing. I did suspect there was something wrong.’ (1)
In retrospect, parents offered reasons for not seeking advice from their GP or health visitor. For example, they were new parents and so did not know to ask, or worked full time and so did not interact with the children as much as they would have liked:
‘So yes, sometimes there are little signs there. Sometimes when you have got a busy life and, you know, you work full time and you know you don't have as much time with the children as you would like [um] you don't always pick up on the signals early enough but intuitively I felt there was something that wasn't quite as it should be but I really couldn't put my finger on it.’ (16)
‘Just watching him play with the other children, you realised that something wasn't right […] But because we were new parents, we didn't know, we never knew there was anything wrong.’ (20)
Others said they were unable themselves to articulate their concerns about their children's development:
‘I thought “I'm not going to my GP and tell him I have got a naughty boy”.’ (3)
Not being able to define their concerns militated against these parents raising the issue with health professionals.
Active concern
Parents in this group described becoming concerned and asking their GP or health visitor for advice when their children were aged between 9 months and 3 years. A few parents described how their children regressed and lost skills such as speech. Others said that they compared their child's development with siblings, or their peers, and it was very apparent to them that there was something different by the time they were 12 months old (or for a few, even earlier). The early signs were delayed developmental milestones such as smiling, crawling, or babbling. Later signs included severe tantrums, anxious behaviours, and a lack of eye contact. These signs are described in the following extracts:
‘When he got to the age of about a year he was still developing normally, crawling, walking, etc, and then his speech didn't really come on very well at all. [Um] We had some concerns about it, he wasn't really babbling and the normal baby talk that you get and I spoke to the health visitor and continued to do so. They didn't think there was anything too much to worry about.’ (6)
‘We first got concerned about him when he was about 6 months old. He didn't smile at people, you know, other children were beginning to babble and say words. He didn't say anything at all really. He just seemed to be very much in his own world. That sounds such a cliché but we could just put him in his bouncer and he would happily sit there all day and not murmur and he didn't get hungry or get thirsty, you know, even as he got older he would never ask for things, we would have to tell him, you know do you want something to eat, do you want something to drink. He would never ask for anything. I mean I knew straight away I could just tell. Even though I didn't have any other children first, I just knew there was something weird about him so to speak.’ (7)
‘We have known probably since he has been about 9 months old that [name] was autistic because he had very strange and unusual behaviours that we couldn't explain and nobody could explain and in the beginning everybody wanted to tell us that it was just normal for a child to be like that but we knew that there was something wrong.’ (19)
Some GPs referred the children straight away for assessment and these children were diagnosed within a relatively short space of time. The remaining parents experienced a delay of between 6 months and 5 years. These parents were told that there was nothing to worry about and their children would grow out of it:
‘Then [er] he moved to another … a nursery school and they didn't actually tell me there was, they sort of mentioned to me that he wouldn't sleep in the afternoons. He would disturb the other children and so I took him to my GP and said, “You know the nursery school have suggested I bring him to you because he won't rest in the afternoon”. And she was, “Like oh well my daughter is four, and she won't rest in the afternoon either”.’ (8)
‘When he was 10 months I remember going to the health visitor because he was nipping and biting and he was really hard going. He pulled the stair gates off the wall. He could launch himself over it. He climbed up furniture. He was really, really dangerous. But the health visitor just said, “No, you know what boys are like”.’ (15)
Parents who felt that their concerns were not fully engaged with described a range of emotions including distress, anger, humiliation, and frustration. Their relationship with their GP and other health professionals was affected by what they perceived to be a lack of engagement with their concerns, particularly as the lack of action or acknowledgement by the GP or health visitor left them feeling isolated and alone:
‘And then like I say it was just really a case of trying to get somebody to [um] listen to us. We went through all the usual routes, you know we went to see the doctors and the regional health visitors and they just didn't seem to latch on the fact that this kid had a problem. They just thought he was underdeveloped but there were certain traits with him that we knew “no it is not underdeveloped there is something psychologically incorrect with this kid”. And we sort of felt on our own for a while, didn't we?’ (9)
‘But it leaves you that way that you think, well I if I go to the doctor he is just going to pooh pooh things. Or treat you like with this funny little grin on their faces as if to say, “Oh aye there is nothing wrong with you really”.’ (15)
‘I feel like I was let down. That is what I do. I do feel like I was let down. I feel like they should have listened to me more.’ (5)
It was not clear why some other children were referred and diagnosed within a few months. It could reflect geographical differences in provision, or different approaches of health professionals and parents, characteristics, and relationships. It was apparent that those parents who had another, older child already diagnosed with ASC experienced a fast-track referral, with the second child often going through a lighter assessment process than their sibling. The combination of the parents’ experience, and the history of the older child, facilitated a faster diagnostic journey. For example, one mother noticed her younger son making a distinctive movement with a pencil in front of his eyes, in a similar way to his older brother who had been diagnosed 2 years before: ‘I contacted our paediatrician who was absolutely fabulous and said “bring him in”.’ (1). Positive relationships with their health professionals were reported by parents who did not experience a delay in diagnosis:
R2: ‘Yes, all the professionals we were involved with …’
R: ‘Were absolutely superb.’
R2: ‘But all the professionals we dealt with, I mean particularly those at [assessment centre] were so supportive to us and so fantastic.’ (14)
