Parents experienced all sorts of emotions when they received their children’s diagnoses, including relief, shock and, for some, a sense of bereavement for the child they imagined they would have. Many parents felt relief because the diagnosis gave a name to what many of them knew was different about their child/ren, and gave them “something to work with” Some parents felt relieved because getting the diagnosis had been a long, difficult and frustrating process during which they felt ‘blamed’ for their children’s developmental delay or for being ‘bad parents’.
Several parents also felt relief because they thought that getting the diagnosis would enable their children to access appropriate support and services both within school and more generally, although this was not always so. Some parents also described expecting the diagnosis because they had done their own research and were sure that their children were on the autism spectrum.
One mother, whose daughter was diagnosed with Asperger syndrome in adulthood, described how she was relieved to get the diagnosis and although the problems were still there she had become more accepting of her daughter’s behaviour over the years.
A few parents, particularly fathers, described being philosophical about getting the diagnosis and took the approach that you deal with the hand you are given in life. They focused on their children’s positive qualities and tried to minimise the significance of the diagnosis.
Some parents found the diagnosis devastating and shocking; as one mother said “It just hit me. I just absolutely… I felt sick. It just absolutely knocked me for six.” Some parents had experienced a grieving process:
In a way there was relief because at least then we knew what we were dealing with, but at the same time it was almost like a bereavement because you have this picture in your head of your two children growing up and how they’ll be, and it was as if all that vision had been taken away - but we didn’t really know what it was going to be replaced with and it was really like a bereavement and, you know, it hits you very hard.
The period following diagnosis
Some parents, particularly mothers, described how they blamed themselves for their children’s autism after getting the diagnosis. They reflected on their actions during pregnancy and thought back on whether something they did in pregnancy - diet, drinking or other activities – could have triggered the autism. For most people feelings of guilt receded over time as they came to terms with the diagnosis.
Many parents felt a confusing mixture of relief and upset. It was like a “rollercoaster ride” as the parents felt pleased to know that their children were on the autism spectrum but at the same time had to accept the long term implications. It was apparent from listening to some parents that autism has become better understood over the past twenty years and parents of older children could look back and reflect on this.
Some parents felt frustrated and upset that they had had to wait so long to get the diagnosis and that some professionals had missed obvious signs that the children were on the autism spectrum. One parent was expecting the diagnosis of Asperger syndrome but found the additional label of ‘developmental delay’ difficult to accept because her son was very bright.
Having more than one child on the spectrum
For some parents with more than one child on the autism spectrum, the diagnosis of the second child was particularly upsetting when they had thought the second child was not on the spectrum. As one mother said, “the first thing that hits you is, is there something wrong with me?”
Reflecting on labels
Some parents reflected on how they felt about their children being labelled as ‘autistic’ and described the dilemma of not really wanting their children to be labelled but knowing that without the label, they would not be able to get support for their children. Some parents felt that having the label meant that teachers had to take notice of their children, particularly in mainstream schools [see
Difficulties with education]. As one parent commented: “There is no point in saying your child has just got emotional or behavioural difficulties because that doesn’t get you any sort of understanding or any support in the classroom”. Having the label also helped parents to obtain financial support such as Disability Living Allowance [see
Employment and Finances].
Some parents found it difficult to accept that their children were ‘disabled’. One mother had been very upset when the head teacher of her son’s school congratulated her on getting the diagnosis; “I remember feeling so upset because I couldn’t explain to her at that moment that he had this label which suddenly seemed terrible”.
Having the label also made life easier in other ways. One parent, for example, described how much easier she found explaining her son’s behaviour to other people once she had the diagnosis because people understood the term autism rather than labels like ‘developmentally delayed’.
Some parents would have liked more information and support at the point of diagnosis instead of just being given the label and feeling they were being left ‘to get on with it’ [see
Information]. One parent found out about the diagnosis from the education authority who read it off her daughter’s statement. This was a particularly difficult way to hear the news.
