About you survey.

The author developed About You Survey was used to collect baseline demographic information including age and identified gender. Employment status was measured by asking participants if they were in paid employment, in tertiary study, or unemployed. Living arrangements was measured by asking participants if they were living with a partner, roommate, or parents. Relationship status was measured by asking participants if they were in a relationship, single, or married. Individual characteristics were measured by asking participants age of diagnosis and whether intervention was received in behaviour support, social skills training, life skills training, and independent living skills. Participants also answered questions on transition planning at school, and whether there was individual and family involvement in transition planning, as well as whether participants received work experience placements at school and disability support. All participants completed the survey comprising 36 questions.

In order to establish credibility and trustworthiness with participants, the survey was peer reviewed by a group of four autistic young adults, who were also peer researchers at Autism Co-operative Research Centre for Living with Autism [39,40]. Feedback from the peer review process on the author developed About You component of the survey suggested gathering further information on participants’ daily occupation. Specifically, this led to the inclusion of an additional section asking about the nature and quality of daily activities conducted by the participant (see sections 1.18 Daily activities, question 1.19 ‘What is your daily activity’, and question 1.20 ‘Please give a brief description of activities you engage in whilst at home’ in the survey). In addition, the online survey was piloted with 2 autistic young adults. The 2 pilot group participants were asked to complete the draft survey and provide feedback on the visual layout of the questions and response format, wording of questions, and clarity of instructions. Feedback from the pilot review was positive with minor suggestions in the wording of 3 questions. Further, feedback from one community support organisation, prior to advertising on their website, prompted the inclusion of 4 open-ended questions in the About You Survey which allowed participants to provide a text response as described below.

1. Can you describe how you feel about your life at this point in time?
2. Can you describe how your daily activities/employment make you feel?
3. Can you describe the extent to which you are able to function independently on a daily basis, for example, making your own meals, getting yourself to work?
4. How would you describe your involvement socially with friends, family, and the community?

At follow-up, the same online survey was administered. In order to gain individual insights into transition experiences over a 12-month time period, 2 open-ended qualitative questions were included to provide additional information about potential changes in QoL. These were not used to measure QoL, rather to inform the case descriptions and identification of factors related to positive experiences and challenges faced during the transition period. These were as follows:

1. Over the last year what were some of the positive experiences you have had?
2. Over the last year what were some of the main challenges you have experienced?

The quality of life questionnaire.

The QoLQ [36] is a 40-item self-report scale designed to measure the QoL of autistic individuals and those with a disability. The QoLQ consists of 4 subscales: (a) Satisfaction (SAT) as a measure of overall wellbeing with life; (b) Competence and Productivity (CP) as a measure of skills and experiences associated with access to employment; (c) Empowerment and Independence (EI) as a measure of functional independence in daily living skills; and (d) Social Belonging and Community Integration (SB) as a measure of community integration. Each subscale has 10 items that are rated on a 3-point likert scale from 1 (low) to 3 (high). Each subscale has a potential total score ranging from 10 to 30 with higher subscale scores representing higher levels of satisfaction, competence and productivity, empowerment and independence, social belonging, and overall higher QoL. Total QoL is computed by adding the 4 subscale scores with an overall potential range of 40 to 120 [37].

The instrument possesses good psychometric properties. The authors [37] report coefficient alphas for the total QoL score as .90 and for each subscale as follows: (a) Satisfaction .78; (b) Competence/Productivity .90; (c) Empowerment/Independence .82; and (d) Social Belonging .67. Test-retest reliability for the total QoL score has been reported as .87 and for each subscale as follows: (a) Satisfaction .80; (b) Competence/Productivity .96; (c) Empowerment/Independence .83; and (d) Social Belonging .82 [37].

There are no published clinical cut-offs for the QoLQ. However, individuals with disability in semi-independent or independent living, engaged in employment, with increased community integration, with a total QoL score of 80 and above are identified as having a high QoL [37]. Those individuals with disability in supervised accommodation, unemployed, with low levels of satisfaction, and a total QoL score of 79 and below are identified as having a low QoL [37]. In order to examine differences during the transition period for participants who showed deterioration and improvement in levels of QoL, a median split of the sample based on total QoL scores was conducted at follow-up. Individuals with a total QoL score of 80 and above are identified as having a high QoL, and those with a total QoL score of 79 and below are identified as having a low QoL [37]. Subscale scores of 22 and above would likely reflect higher levels of Satisfaction, higher Competence/Productivity, greater Empowerment/Independence, and greater Social Belonging, whilst subscale scores of 21 and below would likely reflect lower levels of Satisfaction, lower Competence/Productivity, less Empowerment/Independence, and, less Social Belonging [36]. The QoLQ was used as a measure in this study as it has been validated for individuals with intellectual and developmental disabilities in Australia [32], the US, and other countries [41–44].

The multidimensional scale of perceived social support.

The MSPSS is a 12 item self-report scale designed to measure perceived adequacy of social support from family, friends, and significant others [38]. The MSPSS has 3 subscales with 4 items per subscale corresponding with Support from Significant Other (SSO), Support from Family (SF), and Support from Friends (SFr). Participants are asked to rate items on a 7-point Likert-type scale ranging from very strongly disagree (1) to very strongly agree (7). Total subscale scores are calculated by adding responses to each of the 4 items, then calculating the average score for each subscale. The MSPSS total score is calculated by adding subscale total scores, then computing the average score. Mean scale scores ranging from 1 to 2.9 are considered low support, a score of 3 to 5 is considered moderate support, and a score from 5.1 to 7 is considered high support [26]. Higher total scores indicate increased perceptions of social support.

The psychometric properties of the MSPSS have been established. The authors [38] report Cronbach’s alpha for the total MSPSS score as .88 and for each subscale as follows: (a) Support from Significant Other .91; (b) Support from Family .87; and (c) Support from Friends .85. Test-retest reliability for the total MSPSS score is reported as .85 and for each subscale as follows: (a) Support from Significant Other .72; (b) Support from Family .85; and (c) Support from Friends .75. The MSPSS has been used in research with mothers of autistic children [44] and with autistic adult populations [45,46].

Change in social support and QoL.

To address the first research question and to examine whether QoL and social support changed over the 12-month transition period for the sample of autistic young adults, the data was analysed in several ways. First, changes in subscale and total scores were descriptively examined at baseline and follow-up time points to determine whether measured QoL and MSPSS changed over this period. Second, the Reliable Change Index (RCI) was utilised to determine if individual participants showed reliable change on QoL from baseline to follow-up [47].

RCI’s provide a measure of statistical significance regarding individual change in scores that takes into account the scale reliability and is beneficial with individual participants or small samples. Positive RCI’s reflect increases and negative RCI’s reflect decreases in the target score, and an RCI with a magnitude of 1.96 or greater in either direction is considered statistically reliable at the p < .05 level [47]. RCI’s were calculated for all participants for total QoL and the 4 subscale scores to assess for statistically reliable change longitudinally from baseline to follow-up. Each participant’s RCI was then categorised into, showed statistically reliable improvement, showed statistically reliable deterioration, or showed no reliable change categories to enable reporting of cases showing each type of change during the follow-up period. Individual cases were then categorised into reliable change categories and grouped according to those who showed statistically reliable improvement or statistically reliable deterioration at follow-up in terms of QoL, the primary outcome variable.

Individual case analysis and factors associated with transition.

To address the second research question and examine risk and protective factors that were evident and potentially related to QoL during transition, a series of steps were taken. First, we conducted an inductive content analysis to examine the risk and protective factors associated with QoL [48]. Survey data was grouped into categories of factors contributing to improvement in QoL and those contributing to deterioration in QoL as reported by participants. This analysis was achieved by an in-depth coding process of each participant’s response to the survey questions. The second author conducted the analysis independently to reach consensus on identified risk and protective factors [48]. Factors identified included important needs met in education, work, home, and community, as well as receipt of support services, intervention, and dependence on families and medical systems. Cases were then organised within the QoL change categories as described above (reliable improvement, reliable deterioration).

Two contrasting case studies are presented to provide further in-depth qualitative insight into how these factors were potentially associated with improvements and those with deterioration during the transition period. The process for case selection is described in the Participants section, however the remaining cases are also presented in the Supporting Information [S1 File] 7 Cases, according to reliable change category. Each case study is described in terms of demographic and individual factors, education, support, intervention, QoL, positive experiences, social support, and autism impact and how these changed over a 12-month time period using RCI’s for the key variables of QoL and social support. Descriptive data was supplemented with participant written responses to open-ended questions within the surveys at follow-up. Relevant quotes were extracted from participant responses to support their reported experiences. Common themes across cases were then summarised and contrasted.

Demographic characteristics.

Mr. Keith is a 23-year-old single male who lives with his parents, is employed as a kitchen hand for 20 to 30 hours a week, earns an income of $200 per week, and receives the disability pension. Mr. Keith received an autism diagnosis at the age of 5. He therefore has had his diagnosis for a period of 18 years.

Education, support, and intervention.

Mr. Keith attended a state high school, received support through the special education program, and completed year 12. At school Mr. Keith received a transition plan with parent involvement in transition planning, and received the following interventions: behaviour support, social skills training, independent living skills, and life skills training. Additionally, he received support through disability employment services and had two work experience placements whilst at school. Mr. Keith has a Technical and Further Education College (TAFE) qualification and reported having received life skills training and independent living skills training post high school. Thus, Mr. Keith has completed his education, obtained additional post-secondary education qualifications, and specific skills to enhance his transition.

Quality of life.

Mr. Keith showed clinically reliable improvement in scores on the total QoL, Satisfaction, and Social Belonging subscales from baseline to follow-up. Scores on the Competence/Productivity remained consistently high from baseline to follow-up, thus indicating that he is confident with the skills and experience required for his employment, whilst scores on the Empowerment/Independence subscale remained low for Mr. Keith over time. Notably, Mr. Keith did report receiving comprehensive support at baseline, which may have contributed to his high QoL score at baseline. RCI scores for total QoL and subscales from baseline to follow-up are presented in Table 6.

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Table 6. Summary of QoLQ, RCI’s, and MSPSS categories for Mr. Keith.

https://doi.org/10.1371/journal.pone.0267942.t006

Social support.

Perceived social support scores show an increase on the total Multidimensional Scale of Perceived Social Support score, Support from Significant Other, and Support from Friends subscales over time, whilst Support from Family for Mr. Keith remained high at both time points. Specifically, at 12-month follow-up, Mr. Keith reported that he enjoyed interacting with friends and family on a daily basis and at work he enjoyed meeting customers. In his words, ‘I participate fully with friends and family’. Thus, social support appeared to be a particularly positive feature in Mr. Keith’s transition, especially support from his family.

Challenges.

Scores on the Empowerment/Independence subscale showed no clinically reliable change for Mr. Keith over time, thus indicating Mr. Keith’s independence in daily living activities remained low. Mr. Keith reported no major challenges; however, he did note feelings of inadequacy in not being able to cook meals for himself. Further, Mr. Keith reported difficulty in accessing transport to visit his Grandmother at the nursing home, which was important to him. In addition, he wished that he could attend more community events, and specifically mentioned music concerts. Thus, it would appear that access to transport and mobility may present some difficulty in achieving functional independence for Mr. Keith.

Positive experiences.

At follow-up, scores on the Satisfaction and Social Belonging subscales showed clinically reliable improvement for Mr. Keith. Indeed, Mr. Keith reported being a volunteer at a day-care centre for children with disabilities. In his words, ‘I feel a sense of fulfilment in helping kids, who are having difficulties understanding why they are different because of the ASD’. Thus, it appeared that Mr. Keith experienced meaningful and positive experiences by interacting with and supporting autistic children during the follow-up period.

Autism impact.

For Mr. Keith whilst he reported improvement in QoL overall, and several positive experiences, there were still notable ways in which his ASD impacted his life. Specifically, Mr. Keith reported difficulty accessing transport and attending community events. However, in particular, Mr. Keith reported being happy with his life, satisfied with his work and in his words, he reported that he, ‘Enjoys doing the same things every day’. Thus, maintaining a routine was important and beneficial to Mr. Keith’s overall QoL.

Demographic characteristics.

Mr. Reggie is a 24-year-old-male, is in a relationship, is unemployed, and lives with his parents. He is engaged in part-time study at university and receives the disability pension. Mr. Reggie’s daily activity includes online gaming, online social interaction with his girlfriend, and sleeping. Mr. Reggie received an autism diagnosis at age 11. He therefore has had his diagnosis for a period of 13 years.

Education, support, and intervention.

Mr. Reggie attended a state high school and completed Year 12. At high school, Mr. Reggie did not receive support or interventions, did not access work experience placements, and did not receive a transition plan.

Quality of life.

Mr. Reggie showed clinically reliable deterioration in scores on the total QoL, Satisfaction, Competence/Productivity, and Empowerment/Independence subscales from baseline to follow-up. Scores on the Social Belonging subscale remained low for Mr. Reggie at both baseline and follow-up, thus indicating ongoing difficulty in community integration throughout the transition period. RCI scores for total QoL and subscales from baseline to follow-up are presented in Table 7.

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Table 7. Summary of QoLQ, RCI, and MSPSS categories for Mr. Reggie.

https://doi.org/10.1371/journal.pone.0267942.t007

Social support.

Whilst Mr. Reggie’s reported perceived social support scores remained high on the Support from Significant Other and Support from Family subscales over time, and his perceived Support from Friends remained moderate, with notable difficulties in this area noted. Specifically, at 12-month follow-up, Mr. Reggie reported that his girlfriend, a key source of support, moved interstate, and that he lost contact with his friends over the follow-up period, due to his inability to socialise with them. In his words he reported that, ‘I will go out with friends about two times a year’ indicating that he did not access support from friends regularly. In contrast, Mr. Reggie reported that his family provided him with encouragement by helping him socialise. For example, he stated, ‘They push me do things that I don’t like to do, but I have to, like going to my Grandma’s birthday.’ Thus, support from family appeared to be encouraging for Mr. Reggie.

Challenges.

Low scores on the Satisfaction, Competence/Productivity, and Social Belonging subscales indicated that overall, Mr. Reggie was unhappy with his life situation, and experienced difficulty accessing employment. Specifically, he reported feeling incompetent in enrolling at university and seeking employment. Indeed, Mr. Reggie reported major challenges relating to study and employment. Further, Mr. Reggie stated that, ‘I want to move forward but find it difficult to engage with people and businesses.’ It may also be that Mr. Reggie’s mental health challenges could be contributing to his difficulties with socialising and finding employment. In his words, Mr. Reggie also reported that he was, ‘depressed and unmotivated’ which were additional challenges for him during the transition period. Thus, Mr. Reggie’s challenges in communicating and interacting with people, and feeling unproductive in his life appeared to impact his overall mental health and wellbeing during the transition process.

Positive experiences.

Mr. Reggie was able to identify some positive experiences during the 12 months. For example, he reported getting his driver’s licence as a positive experience, however in his words he also reported, ‘I don’t like going out, so I get mum to do errands for me.’ Thus, while he achieved something positive, he was unable to integrate this fully into his daily routine. As he was able to book flights and accommodation to visit his partner interstate, Mr. Reggie viewed these abilities as a positive experience.

Autism impact.

For Mr. Reggie, the impacts of his autism and associated challenges appeared to have a considerable effect on his daily activities. Overall, Mr. Reggie reported ongoing feelings of inadequacy in communicating with people. Notably, communication difficulties are a hallmark of autism [49]. Thus, communication difficulties remained a challenge for him. Further, Mr. Reggie appeared to experience some of the negative stigma attached to autism during the transition period, as he reported, ‘People see the diagnosis and think I can’t do things.’ He reported that this affected his behaviour, and often meant that he asked his mother to contact people at places of importance on his behalf. For example, he reported, ‘I get mum to contact places, like the university for enrolment, but then people treat me weird after.’ Thus, it would appear that in this case, family advocacy in communicating for Mr. Reggie as a young adult, presented a barrier for him in later social interactions.