An exploration of the experience of parents with children with autism spectrum disorder after diagnosis and intervention

Ethical approval was obtained from the Curtin University Human Research Ethics Committee (HR 138/2012) and the internal ethical review board of the Disability Services Commission (DSC) in Western Australia. The questionnaire was distributed by post to families with children registered as having an ASD on the DSC client register. Only families with diagnosed children currently under the age of 18 years were included. At the time of the mail-out, 3965 children were registered with the DSC from 3723 families. Families with more than one child under 18 received one questionnaire for each child with ASD. Of the questionnaires mailed out, 3494 were sent to families with one child with ASD, 217 questionnaires were sent to families with two diagnosed children, 11 questionnaires were sent to families with three diagnosed children, and 1 questionnaire was sent to a family with four children diagnosed with ASD. Of the 3723 questionnaires (covering 3965 children) sent out by the DSC, 192 were returned as “address unknown”. In total, 521 questionnaires were returned, resulting in a 15% response rate. The characteristics of the included 521 children with ASD are presented in Table 1, including information on the respondent, and the sex, age, and diagnosis of the child. Questionnaire responses were entered into a data file using IBM SPSS version 20 and analyzed using SAS version 9.2 statistical software. A drop-out analysis was carried out 6 months after the original data collection period. A random sample of 405 families registered with the DSC was contacted for a telephone follow-up. Non-respondents were then asked to answer an abbreviated form of the questionnaire over the phone. For the purposes of comparisons between those who did and did not respond to the long-form questionnaire that was sent out by mail, independent-samples t-tests were used to compare the ages of children, chi-squared tests were used to compare categorical demographic variables, and Mann–Whitney U tests were carried out to compare calculated cost variables (24). It is noteworthy that only questions covering the out-of-pocket treatment costs and the loss of income from employment reduction could be calculated for both respondents and non-respondents.

Qualitative responses for Questions 63 and 64 were transcribed into a word-processing document and exported into NVivo data management software (25). A content analysis approach was adopted (26) and the data were inductively coded (27) to create nodes relating to a response made. Each response was carefully interpreted and coded into an initial list of 16 emerging sub-themes by adding up the most recurring responses. The themes were then checked and confirmed by the research team and then connected to achieve a set of four overarching themes (Figure 1) including diagnosis and EI treatment, support services, geographical location, and access to services. The themes were then further cross-checked with the research team (28) and written up using quotes to illustrate the themes. To triangulate the findings derived from the qualitative analysis (29), quantitative responses to the Likert scale components of Questions 63 and 64 were analyzed using descriptive statistics including determining the percentage frequency of responses.

FIGURE 1.

The “diagnosis and EI treatment” theme was applied to responses detailing the impact and outcomes of diagnosis and treatment. Statements that referred to the impact of EI treatment yielded 364 responses indicating a perceived improvement in quality of life for the child. Respondents described outcomes for their child including the ability to verbally communicate with other children and family members, self-control of behavior, and social skills:

Similarly, 164 responses touched on the direct link between EI and improvements in family life. Respondents described how intervention supported family members to form strategies that allowed the child to develop and facilitated their involvement in the child’s everyday life. Impact on family life was directly related to families’ ability to get a diagnosis. Respondents indicated that this was the crucial first step in accessing services, and both the process and wait could negatively impact family life:

Inability to get a diagnosis impacted upon both child and family in terms of how the child’s behavior was viewed by others. Respondents believed that services were often reluctant to make a diagnosis:

The theme of “support” referred to families’ experiences with healthcare and school services, and how their child benefited from these services. Forty-five responses were made to a lack of support from health services, with a key sub-theme being a sense of isolation and disempowerment:

Respondents described a general feeling of frustration: not being listened to by services and staff not having the knowledge or experience to diagnose or refer to appropriate services:

Similarly, within education settings, respondents indicated frustration with the support and understanding offered by school services, particularly the lack of understanding and specialist of teaching staff:

The theme “geographical location” was applied to statements associated with difficulty accessing service on the basis of location. Eighteen responses cited geographical location as a barrier that inhibited their access to services to support their child, particularly respondents living outside of Perth in rural and regional locations:

In rural locations, the availability of treatment was also influenced by the periodic visits of specialists throughout the year. In particular, support with adequate training to meet the individual needs of the child was limited due to geographical location:

When respondents were able to access services, they reported a positive impact on both the family and the child’s quality of life; however, this was countered by their continued frustration at having to travel to Perth to access services:

“Access to services” referred to responses on funding, wait times, and cost. The impact of waiting for a diagnosis to access services had a ‘knock-on’ effect in terms of accessing EI. Thirty-four responses were made in relation to waiting to access EI after diagnosis. Respondents described waiting between 6 and 12 months for services:

Referral to appropriate services as well as the cost of EI was identified as a barrier to supporting their child. Thirteen responses were made regarding paying for private input for their child:

Respondents also expressed frustration with the cut-off age for intervention. This was related to the perceived unwillingness of medical staff to diagnose early and resulting in a child receiving delayed EI treatment or ageing out before access.

Rating scale responses for Question 63 “Has your child’s ASD-related intervention/behavioral therapy improved your family life” are shown in Table 2. Analysis of response frequency indicated that respondents felt strongly that EI improved family life, with 71.3% of respondents indicating that EI assisted ‘somewhat’ or ‘definitely’.

Similarly, responses for Question 64 “Do you feel that earlier access to intervention may have led to more improvements in your child’s quality of life?” showed that 78.4% of respondents agreed that earlier access to intervention would have led to improved child’s quality of life ‘somewhat’ or ‘definitely’ (Table 2).

Although this research has provided critical insight into the perspectives of parents of children with ASD during the process of receiving a diagnosis and EI, the results must be interpreted with caution. The experiences of respondents in the current study may be influenced by the particular time points and contexts in which the data were collected. It is possible that the funding and service provision structures available to respondents at the time of data collection may have influenced the results and that other contexts may yield differing perspectives. Although this study has a considerable sample size, it is likely that the perspectives presented by respondents in the current study do not adequately capture the experiences of all care-givers of children with ASD and it is possible that those respondents who did participate in this study introduced a particular bias to the results (33). Although attempts have been made to reduce bias in interpreting these results, the potential for researcher bias must also be acknowledged (33). Although the questionnaire enabled participants’ greater anonymity and allowed a significantly greater population to be reached, this may have contributed towards a distorted interpretation of the data. Finally, the majority of respondents in the current study were biological mothers (24). It has been shown that mothers and fathers differ in their experiences of caring for a child with health conditions such as ASD, and may use differing coping strategies. Mothers, in particular, may show significant levels of stress and reduced quality of life (34). Although it was not possible to examine sex differences in the current study, it is possible that mothers and fathers differ in their perception of EI and behavioral intervention on family outcomes.

By acknowledging these parent-reported challenges, we highlight that many of the frustrating stressors associated with having a child with ASD appear to be external, situational, and bureaucratic. Yet, the presence of these stressors and delays in access can coexist with a positive perception of change and improvement as a consequence of eventual diagnosis and access to intervention. Although not a conventional qualitative study, the collective experiences of this large sample of parents highlight the importance of fully understanding the family context for all professionals interacting with families pre-diagnosis and post-diagnosis. The quotes extracted from responders are illustrative of experiences that may be anecdotally known to some professionals, but provide beneficial insight for all medical and health professionals, service providers, government agencies, and funding providers, as well as parent and family advocates. The views expressed by these parents may also inform future quantitative research investigating parent attitudes towards diagnosis and treatment, and the impact that these processes may have on the family.