View in EDS HTML Full Text PDF Full Text

'Transitions Are Scary for Our Kids, and They're Scary for Us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism

Saved in:
Bibliographic Details
Title: 'Transitions Are Scary for Our Kids, and They're Scary for Us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism
Language: English
Authors: Cheak-Zamora, Nancy C., Teti, Michelle, First, Jennifer
Source: Journal of Applied Research in Intellectual Disabilities. Nov 2015 28(6):548-560.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 13
Publication Date: 2015
Sponsoring Agency: Health Resources and Services Administration (DHHS), Maternal and Child Health Bureau
Contract Number: H6MMC11059
Document Type: Journal Articles
Reports - Research
Descriptors: Adolescents, Autism, Pervasive Developmental Disorders, Focus Groups, Caregivers, Grounded Theory, Anxiety, Fear, Change, Adjustment (to Environment), Needs, Motivation, Access to Education, Equal Opportunities (Jobs)
DOI: 10.1111/jar.12150
ISSN: 1360-2322
Abstract: Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. Results: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. Conclusions: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.
Abstractor: As Provided
Entry Date: 2015
Accession Number: EJ1076515
Database: ERIC
Full text is not displayed to guests.
FullText Links:
  – Type: pdflink
    Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwF_3IzXbFpOVWDttF3PCBnjAAAA4jCB3wYJKoZIhvcNAQcGoIHRMIHOAgEAMIHIBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDDON55gq5sqr7UO78AIBEICBmpCviiBiEskx5RN6-pEFqNgsE-699KJyW5Djxfeo-wwbgmAYeptoiZKgcS0bWVprSoom5aZLtczZWN-hI8vmaQzAS_3sPJXvFGrKSkz1iGDL-DN539m4zCcnDlGtaYvdbvENT5qBMHq8SomEVz3s8RzxduSKPot3Gy7reK-gTA4wvYFGtrkNj-jXSrDBbCT_jP30cT79NimylTw=
Text:
  Availability: 1
  Value: <anid>AN0110081878;e0301nov.15;2018Jul06.11:55;v2.2.500</anid> <title id="AN0110081878-1">'Transitions are Scary for our Kids, and They're Scary for us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism. </title> <p>Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. Results: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. Conclusions: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.</p> <p>adolescence/youth; autism; caregiving; education; social issues; vocation</p> <p>Transitioning from adolescence to adulthood is a natural process involving multiple factors. Although all adolescents experience some obstacles while making this transition, those living with special needs experience more difficulties, such as adjusting to changing environments and responsibilities, learning independent living and self‐advocacy skills, and locating the assistance needed to successfully transition to a level of appropriate independence. Assistance for making the transition into adulthood is important to youth with autism spectrum disorder (ASD) because many experience a myriad of behavioural, communication, psychological and medical conditions (Myers & Johnson [<reflink idref="bib29" id="ref1">29</reflink>] ; Coury et al. [<reflink idref="bib10" id="ref2">10</reflink>] ; Mazurek & Kanne [<reflink idref="bib26" id="ref3">26</reflink>] ). ASD is defined as impairments in social interactions, delays or impairment in communication skills and the existence of restricted, repetitive, or stereotyped actions or interest (American Psychiatric Association [<reflink idref="bib3" id="ref4">3</reflink>] ). This combination of comorbid physical and mental health conditions and developmental disability increases these individuals' dependence on education, vocation and healthcare systems throughout the lifespan.</p> <p>Transition planning services are provided to youth with special needs to help make a smooth transition into adult life. Ideally, transition planning is gradual and holistic in nature, starting as early as 12 years of age, which includes vocational assistance, personnel and agencies from the youth's home, school and community (Holtz et al. [<reflink idref="bib15" id="ref5">15</reflink>] ; King & Meyer [<reflink idref="bib18" id="ref6">18</reflink>] ). Transition planning has been recommended by numerous organizations and federal agencies for well over a decade (Blum et al. [<reflink idref="bib5" id="ref7">5</reflink>] ; American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians [<reflink idref="bib2" id="ref8">2</reflink>] ). This level of planning has been shown to increase independence and successful outcomes in home and work environments, but it must be continuous, coordinated and inclusive of youth with ASD in developing and executing goals (Hendricks & Wehman [<reflink idref="bib14" id="ref9">14</reflink>] ).</p> <p>Specifically, early implementation of educational and vocational support services has been shown to increase the rates of continuous employment, salary, and quality of life of youth and adults with ASD. Other predictors of adult employment consist of having a community‐based job in high school, high parental expectations and adolescent responsibility for household chores (Carter et al. [<reflink idref="bib8" id="ref10">8</reflink>] ). Unfortunately, gaps exist within the application and evaluation of education and vocational programmes, where very few are based on theoretical models (Hendricks & Wehman [<reflink idref="bib14" id="ref11">14</reflink>] ). Parents often report that these programmes were unhelpful and that youth with ASD were not involved in the planning process (Cameto et al. [<reflink idref="bib6" id="ref12">6</reflink>] ; Ohio Center of Autism & Low Incidence [<reflink idref="bib30" id="ref13">30</reflink>] ).</p> <p>Not surprisingly, youth with ASD experience significant challenges as they transition to adulthood. Less than 25% live independently, work in competitive jobs and have a social network (Seltzer et al. [<reflink idref="bib35" id="ref14">35</reflink>] ; Billstedt et al. [<reflink idref="bib4" id="ref15">4</reflink>] ; Levy & Perry [<reflink idref="bib23" id="ref16">23</reflink>] ). Eaves & Ho ([<reflink idref="bib12" id="ref17">12</reflink>] ) found that young adults with ASD averaged around 5 h of work per week. A review of the literature indicates that the vast majority of adolescents with ASD live with their parents or are dependent on parental support well into adulthood (Hendricks & Wehman [<reflink idref="bib14" id="ref18">14</reflink>] ). Continued research to identify effective education strategies to promote independence in youth and adults with ASD is needed (Hendricks & Wehman [<reflink idref="bib14" id="ref19">14</reflink>] ).</p> <p>Qualitative research is an excellent tool for understanding the perspectives of caregivers and youth with ASD (Humphrey & Lewis [<reflink idref="bib16" id="ref20">16</reflink>] ; Kaehne & O'Connell [<reflink idref="bib17" id="ref21">17</reflink>] ). The education, vocation and independent living challenges they face are more complex than most. The open‐ended opportunities that qualitative methods allow for participants to express their experiences are particularly valuable for young people with ASD that might struggle to interpret researcher‐driven, closed‐ended quantitative questions. Furthermore, because youth with ASD and their caregivers are experts on their family challenges, strengths and what supports will help increase independence, they need ample opportunities to share their perspectives.</p> <p>Caregiver perspectives on the service needs of their youth have been well documented, but qualitative studies examining caregiver and youth perspectives on the transition into adulthood are lacking (Hendricks & Wehman [<reflink idref="bib14" id="ref22">14</reflink>] ; Murphy et al. [<reflink idref="bib28" id="ref23">28</reflink>] ). Those that do include adolescents with ASD focus mostly on high‐functioning individuals, particularly those diagnosed with Asperger's syndrome (Humphrey & Lewis [<reflink idref="bib16" id="ref24">16</reflink>] ; Muller et al. [<reflink idref="bib27" id="ref25">27</reflink>] ). Furthermore, although several studies have examined independence issues for youth with ASD, none have examined the perspectives of young people with ASD regarding transition to adulthood. As a result, researchers and practitioners lack insight into what youth with ASD and their caregivers perceive to be their greatest needs during the transition to adulthood. Thus, we explored the perspectives of adolescents with ASD and their caregivers by examining their social, education and vocation needs through focus groups. Specifically, we examined service needs, barriers and coordination, as well as general issues around youth's transition to adulthood.</p> <hd id="AN0110081878-2">Method</hd> <hd id="AN0110081878-3">Participants</hd> <p>Participants included both youth with ASD and their caregivers. Young participants (n = 13) ranged from 15 to 22 years in age and were primarily male (n = 11). Caregivers (n = 19) were primarily female (n = 17) and lived in the same home as the youth. The majority (n = 18) of caregivers were parents of a youth with ASD, where only one participant provided care as an aunt of an adolescent with ASD. All caregivers provided daily care and/or assistance to their youth. Authors developed a basic one‐item assessment of youth's functional level for two components (verbal and self‐care skill) consistently used in autism‐specific diagnostic and behavioural assessments (Volkmar et al. [<reflink idref="bib36" id="ref26">36</reflink>] ; Lord et al. [<reflink idref="bib25" id="ref27">25</reflink>] ). As shown in Table [NaN] , caregivers reported their youth's general verbal ability and self‐help skills. The majority of caregivers (82%, n = 14) rated their youth as having good verbal and self‐care skills, thus needing only ‘some help’. A few caregivers (n = 3) indicated their youth had only some verbal and self‐care skills and needed ‘a lot of help’, where on the other hand, two caregivers described their youth as ‘mostly or completely independent’. One youth participant lived ‘independently’, while all others lived with their caregivers. Youth also reported general daily activities and educational attainment with nearly half of participants currently attending high school and half having graduated from high school (Table [NaN] ). Of those that had exited high school, two had part‐time employment or volunteered (1–2 days per week), one was seeking employment, one attended an adult day care, and two reported staying at home most day doing other activities such as reading, sleeping, watching television and playing video games. Although some of the participants had attended post‐secondary education, none were currently enrolled at the time of the study.</p> <p>Youth functioning and activity level</p> <p> <ephtml> <table><tr><th align="left" /><th align="center">Number</th></tr><tr><td align="left">Parent reported youth's functional ability</td></tr><tr><td align="left">Few or no verbal and self‐care skills; dependent on others</td><td align="char" char=".">0</td></tr><tr><td align="left">Some verbal and self‐care skills, but still needs much help</td><td align="char" char=".">3</td></tr><tr><td align="left">Good verbal and self‐care skills, but still needs some help</td><td align="char" char=".">14</td></tr><tr><td align="left">Mostly or completely independent</td><td align="char" char=".">2</td></tr><tr><td align="left">Youth reported daily activity</td></tr><tr><td align="left">Adult day care</td><td align="char" char=".">1</td></tr><tr><td align="left">Part‐time work or volunteer</td><td align="char" char=".">2</td></tr><tr><td align="left">Looking for employment</td><td align="char" char=".">1</td></tr><tr><td align="left">Read, sleep, play video games, other</td><td align="char" char=".">2</td></tr><tr><td align="left">High school</td><td align="char" char=".">5</td></tr><tr><td align="left">Youth reported current educational programme</td></tr><tr><td align="left">High school</td><td align="char" char=".">5</td></tr><tr><td align="left">Graduate/Exited high school</td><td align="char" char=".">7</td></tr><tr><td align="left">College</td><td align="char" char=".">0</td></tr><tr><td align="left">Age of participating youth</td></tr><tr><td align="left">Under 18 years of age</td><td align="char" char=".">5</td></tr><tr><td align="left">18–20 years of age</td><td align="char" char=".">6</td></tr><tr><td align="left">21–22 years of age</td><td align="char" char=".">2</td></tr></table> </ephtml> </p> <p>1 One youth did not response to daily activity or education question.</p> <hd id="AN0110081878-4">Procedures</hd> <p>After receiving approval for all study procedures from the Institutional Review Board (IRB), convenience sampling was used to recruit participants from two Missouri areas. Both focus group sites were in urban centres within Missouri with efforts made to recruit participants from all surrounding areas. Study flyers were posted at all surrounding clinics providing services for youth with ASD and through mailers using the clinic's participant list serve. All caregivers of youth with ASD who expressed interest were eligible to participate, along with any youth who expressed interest and had at least minimal verbal ability. Nineteen caregivers and 13 youth attended the focus groups. The first and second authors conducted focus groups with caregivers and with youth simultaneously at each location. In total, four focus groups were conducted, one with caregivers and one with youth at the first site and one with caregivers and one with youth at the second site. Youth focus groups included four to nine participants each, and caregiver focus groups ranged from nine to ten participants. Additionally, one youth was accompanied by a sibling serving as her advocate. All participants were given the opportunity to discuss the focus of the research, prior to giving consent, and to read a statement which included details on their right to withdraw at any stage of the process. Each focus group session was recorded to ensure accurate documentation of data. At the close of the focus group sessions, all caregivers and young people received a guide to local services to meet their own and youth's needs and a $50 gift card for their participation.</p> <p>Focus groups were chosen for this study because they are the best suited method to explore group norms regarding transition experiences and commonly shared participant experiences (Krueger [<reflink idref="bib19" id="ref28">19</reflink>] ). We were also interested in how youth would engage each other in conversation and anticipated that this method would add important questions to our existing interview guides while providing a particularly effective way to help adolescents communicate with each other. (see appendix [NaN] ) Thus, we used semi‐structured focus group guides that centred on exploring caregivers' and youths' transition from adolescence to adulthood. Questions were similar across both stakeholder groups. Example questions for caregivers included: ‘What kind of help does your child need to become an adult?’ and ‘What aspect(s) of your child's transition to adulthood do you feel most confident about?’ Example questions for youth included: ‘When you think about becoming an adult, what kinds of preparations do you need to make for the future?’ and ‘What services do you need the most to transition to adulthood?’</p> <hd id="AN0110081878-5">Communication and facilitation support for youth</hd> <p>Focus group facilitators provided additional support to youth to promote participation and ensure all youth felt comfortable within the focus group setting. Upon enrolment, youth and their caregivers were sent written outlines of the process and examples of questions that would be asked within the focus groups. Participants were encouraged to contact the project staff if they had any questions and were permitted to bring an advocate (support person) with them, if needed. As discussed previously, one youth was accompanied by a sibling serving as her advocate. An introductory period was built into the youth focus group timeline where youth were able to get refreshments and having unstructured conversations with fellow participants and facilitators.</p> <p>In addition to focus group guides, youth were presented general images relating to each question (e.g. youth driving, doctor's appointment) to help orient them to the subject matter and facilitate discussion. When necessary, additional prompts and encouragement were provided to adolescents with increased needs. Despite being at slightly different developmental stages, all of the youth participated in the focus group discussions. To assure appropriate participation from all of the group members, the facilitators first directed questions to the entire group, allowing youth to freely respond. Next, the facilitators asked youth who had not yet responded if they had additional thoughts or comments to add to the discussion to encourage and assist their participation. As a result of these techniques, all youth, even those with limited communication skills, contributed to the focus group discussion of every topic.</p> <hd id="AN0110081878-6">Analysis</hd> <p>Project data were rich and included over 250 pages of group‐level data, which were sufficient to achieve data saturation and answer our research questions (Charmaz [<reflink idref="bib9" id="ref29">9</reflink>] ). All four group sessions of the study were transcribed verbatim and edited for clarity only. The transcripts were then entered into a qualitative software analysis package to facilitate data coding. The first, second and third authors reviewed the transcripts multiple times to become familiar with the key themes. Subsequently, we created a codebook describing the themes and conducted a theme analysis of the data using several strategies derived from Grounded Theory: general and specific coding and analytical memos (Charmaz [<reflink idref="bib9" id="ref30">9</reflink>] ). As per Charmaz, we adapted Grounded Theory techniques but did not use all of the components of the original method. For example, we were interested in how this method prioritizes participants' words and experiences and could help us build new ideas about transition interventions from themes grounded in participants' perspectives. Thus, we identified themes based on youth and caregiver responses and not predetermined categories. On the other hand, we recognize that our analysis was also influenced by external factors and not just participants' experiences, such as our interview instrument. Although semi‐structured, our questions encouraged participants to discuss specific topics more than others, which influenced theme patterns.</p> <p>Caregiver and youth transcripts were analysed separately to identify themes unique to each group. Coding progressed in two stages, open or more general coding, which was followed by selective or more specific coding (Charmaz [<reflink idref="bib9" id="ref31">9</reflink>] ). Analytical notes were taken throughout all phases of coding to highlight key questions about relationships in the data and to refine codes. We assessed the quality or trustworthiness of our analysis in two ways (Lincoln & Guba [<reflink idref="bib24" id="ref32">24</reflink>] ). By facilitating the sessions and reviewing the transcripts in detail, we gained sufficient knowledge about the data to perform the analysis and ensure the validity of our findings. In data debriefing sessions, the first, second and third authors discussed coding differences until we reached a sufficient level of agreement and reliability regarding discrepancies. Below, we describe the key themes in the data with quotes from both caregivers and youth. We do not provide specific descriptions of participants to protect their identities, given this research was conducted with a limited number of participants in a small area in mid Missouri.</p> <hd id="AN0110081878-7">Results</hd> <hd id="AN0110081878-8">Overview of caregiver and youth attitudes</hd> <p>Narratives from both caregivers and youths about transitioning to adulthood were marked by concern and anxiety generally caused by lack of service availability. Caregivers expressed worry about the lack of social, educational and vocational assistance services, along with fatigue from having to fill unmet needs themselves. One participant described multiple ‘hurdles’ accessing services and explained, ‘Either there's a big waiting list or [no help] at all’. Similarly, another caregiver described poor services and long waiting lists. She explained that her daughter experienced the ‘biggest transition’ at age 18, when she went from ‘being in school all day’ to ‘waiting’ for services:</p> <p>It gets almost impossible. You keep running across brick walls, brick walls, brick walls, waiting lists, waiting lists, waiting lists…You sit around for two or three years before anything's done…So your child goes to “adult day care.” But, not all of our children need to be there because they're high functioning…Our children are stuck…Me and my daughter are absolutely stuck. There's nowhere for her to go, nowhere for me to go.</p> <p>Another participant explained that she had a 17‐year‐old son and did not know ‘how to get him ready for adulthood’. When discussing the lack of available services she said, ‘We just don't really fit in anywhere’. She came to the focus group to get ideas lamenting, ‘He is just not ready for the world, and the world's not ready for him’.</p> <p>To compensate for the lack of services, caregivers helped youth with countless tasks, including cooking, driving, cleaning, finance management and basic chores. One caregiver described helping her youth to secure an apartment, but noted that it was very difficult, ‘When I say I'm busy – I keep two houses, two jobs – I keep a schedule for two adult people to make sure he's taken care of’. Another caregiver noted, ‘you have to be your child's advocate in everything…they can't do it for themselves’. Still, another described how she created a ‘rule book’ for her daughter. It was a 3‐ring binder detailing how to handle various situations – like challenges in school. She said, ‘Her entire life is in there’. She also explained:</p> <p>The only thing I really feel confident about my daughter's transition is what I know that I have taught her…Otherwise, the programs and the waiting lists…There's really nothing else I feel confident about.</p> <p>Caregivers also generally believed that their youth were not ready or confident about becoming an adult. For example, one caregiver described her perception of her son's apathy towards adulthood, ‘He's got confidence that mom and dad are going to take care of him…He's not concerned at all about transitioning’.</p> <p>Youth supported their caregivers' beliefs by expressing a lack of confidence about the future, but they also expressed significant concerns about becoming an adult. They were overwhelmed by the future and, as a result, wanted to focus on the present. One participant summarized the feelings of many youth when he explained:</p> <p>[Our caregivers] try to push us into the future – and I don't want to have that happen. I want to focus mainly on the present…I don't really [like] thinking about what my future's going to be. ‘Cause everyone's life is not a straight road. It's always twists, curves, and loops. It's never straight. So, I don't like thinking about the entire thing. I only like thinking about what I can see in front of me, not the entire thing.</p> <hd id="AN0110081878-9">Social transition challenges</hd> <p>Caregivers described how social activities and relationships changed as their children became teenagers, which often complicated relationships with family members, friends and dating partners. One caregiver described how her son's attempts to make new friendships were often thwarted by other concerned parents: ‘Some of the other girls that he's met as friends, their moms have looked at him and said, “No. Sorry. You're not coming anywhere near my daughter,” because he's different'.</p> <p>Several caregivers said they did not know how to talk to their youth about dating and they did not know who to ask for more help. As one caregiver put it, ‘I don't know whether it would be the doctor or the counselor that works with our children for talking about appropriate relationships with the opposite sex? That is such a big area for [my son]’. She explained her son had called 1–800 dating numbers as well, and she knew that she needed to talk to him more about sex, but admitted, ‘How do I talk about [sex]? I mean, I just don't know what to say’. She did know that she wanted to be sure that her son knew that, ‘Everybody has the right to feel loved. Everybody has the right to have a relationship'. That proved difficult at times particularly given society's views towards people with ASD. Another caregiver noted:</p> <p>I think the word “Autism” has come to mean something very negative to society as a whole…They don't realize that there is a spectrum, a continuum, that some of these kids are just a little weird, but they can function. I think that more knowledge, tolerance, and understanding [is necessary].</p> <p>All caregivers agreed that socialization programmes were important. Several mentioned good programmes for younger children but said teens were generally, ‘left out in the cold’. Another caregiver explained that most of the responsibility was falling on the caregivers who were often overwhelmed by this responsibility:</p> <p>We need a lot of mentors because mom and dad need a break. And, to be able to say, “Hey. Here. Have a friend that's around your age that you can go off and do stuff with.” Build those social skills through a mentor.</p> <p>One caregiver described this as, ‘somebody that they're comfortable with, that you're comfortable with, and that can just kind of follow them, I mean, and just kind of help them’. She said that her adolescent needed someone to talk to who, ‘knew where he was coming from…I just wish there was more mentoring like Big Brothers and Big Sisters are for typical kids or something like that for adults, you know’.</p> <p>Youth also described the value of social relationships and wanted more opportunities to build them, where they learn how to interact with others. One youth said that friendships were important, especially to help him to think about his future: ‘Friends can help us make sure we're reaching our goals and we're thinking about these things correctly'. Another participant described her activity in a sports programme at school and said that the programme and interaction with others, ‘helps you get ready for the adult world’. Similarly, one participant described how her counsellor was helping her ‘socialize better’ and said that, ‘Like, this week, I was able to talk to my crush without stepping on my tongue’. She also told the group about the joy she experienced when learning about other people with autism and sharing information with her friends: ‘I just feel empowered by that because it makes me feel like I'm not alone. We've already suggested [the film about] Temple Grandin to friends and family members. And, even my grandpa wants to watch the movie'.</p> <hd id="AN0110081878-10">Education transition challenges</hd> <p>Many caregivers cited both challenging and positive experiences relating to their youth's time in high school. The most positive examples included accounts of supportive and understanding high school teachers and Individualized Education Programs (IEPs) that met the needs of their youth. However, transitioning to college was wrought with much more difficulty. For the most part, caregivers wanted their youth to go to college. As one caregiver said, ‘I explained to him, he's going to college because if he doesn't go, he's going to be really bored’. Another caregiver noted, ‘I fully expect my daughter will go to college’. Making that happen was more challenging. One caregiver described the situation when her son did attend college:</p> <p>It did not work. Now he's on academic suspension because he failed. He just does not have the gumption to go through it. He's very smart. His overall IQ is 120, but his social skills are way below that…All he wants to do is sit at home and play games.</p> <p>Another caregiver described facing similar challenges with her son. She worried about leaving the supports that they built for him in high school and about how he would function without someone there to ‘redirect’ and ‘focus’ him. Other caregivers described their youth's fears about college. For example, one mother described her son's concern about being stranded:</p> <p>He thought when he would go to college that we were going to take him, drop him off, and leave. We have two older children and that's exactly what we did…He didn't know that there were months and months of preparation before we actually took them to college and dropped them off.</p> <p>Youth echoed their caregivers' reservations about the transition to college. For example, one participant talked about receiving a scholarship to attend a 2‐year college because of her excellent grades in high school but still admitted, ‘College is another worry for me’. Another student explained she could not go to college, ‘because see, I can't. I'm not up to a “college” level’.</p> <p>Other participants were more confident in their ability to succeed in college but still timid about the experience. One participant said, ‘I feel quite confident about [graduating high school]. It's just that I don't know what I'm going to be doing while I'm at college'. Some youth were aware of their caregiver's expectations for them, but some were unsure of how to negotiate their own interests versus their caregivers. One participant explained how he avoided talking about college and careers with his mom:</p> <p>I usually talk to my counselors in my schools privately because I have my own kind of personal [career] goals that I'm trying to strive for. I don't like letting my parents know this because obviously many of these [goals] change.</p> <hd id="AN0110081878-11">Vocation transition challenges</hd> <p>Caregivers identified work as a potentially rewarding activity for their youth, but for the most part, described significant work challenges, such as the lack of fulfilling jobs and motivation issues. All of the caregivers largely agreed on two points – good and interesting jobs gave their children ‘a sense of self‐esteem’ but also that high‐quality jobs were hard to attain. A few caregivers described good job training programmes, but more expressed frustration at the lack of available services and the experience of having their children labelled as ‘unemployable’. The current poor economic situation in the United States overall worsened these challenges. One caregiver explained this and said, ‘A lot of the places that used to hire our kids to clean and wipe off tables just aren't doing it anymore because the recession has hit so hard’.</p> <p>One caregiver described how hard it was to help her son find a job he was interested in. Eventually, he obtained a position cleaning horse stables, which he liked – but getting there was a difficult road, and her son had to stay persistent:</p> <p>He told everybody he was going to work at [hardware store] just because he went there and they mentioned, “Well, maybe you can work here.” But they had only one [job] on the loading dock from 9 PM to 1 AM. And so, they just couldn't help him. Years ago, that would have crushed him but it didn't now. You know, he just said, “Okay. I'll get something else.” So, I feel a lot of confidence about the fact that he wants to [work]…I think one of these days he'll find his niche.</p> <p>Others described the social misperception that people with ASD could not work as a barrier to securing a fulfilling and ‘adult’ job:</p> <p>[Having ASD] does not mean that they're not capable. Because I've run into this or my husband has run into this with himself because he's on the spectrum. Once he identifies [the autism] to an employer, guess what? He's cleaning. But, [he could rewire their computer network!]</p> <p>Another caregiver agreed that adolescents with ASD were ‘pigeon‐holed’ as only being able to do certain jobs. She described her frustration with her son's cleaning job:</p> <p>He's done cleaning jobs since he got out of high school. We told [the employer] we'd prefer he not do cleaning. I want him to be happy when he goes to work. They hired him as a stocker and said, “We want you to do something that's familiar for you for six months, and then we'll transfer you to another department.” He's been there a year and a half, and he's still doing restrooms.</p> <p>Motivation for work was another concern for caregivers. As one noted, ‘I think my son will be successful, but not necessarily at what I want him to be successful at’. Caregivers worried that their youth were interested in jobs that were not really feasible, like computer gaming – and some were concerned about their youth's motivation overall. One said she did not know how her son could work because he sleeps and watches TV all day. She admitted, ‘It breaks my heart because he's just wasting away his life’, but she was not sure how to motivate him to work. Another caregiver described a similar situation, ‘My son has no motivation. He had a job. He did get fired from his job…behavior related. But, I mean, he has no motivation. I can't get him to even look into taking a college class'.</p> <p>Adolescents also equated work with adulthood and feeling good about being an adult, but they also expressed much fear and anxiety about finding a job. For example, one youth described his primary goal as, ‘finding a job I like’. Another identified finding a job as, ‘the most important thing’ on his mind. Another said that when he thinks about adulthood, ‘my thoughts are pertaining to jobs, careers, mainly professions’. Actually, obtaining a job was more challenging. Many youth expressed interest in computers, cartoons or video game programming jobs, but most were not quite sure how to obtain them. A few described good job training programmes, but many identified programmes that could not quite help them or programmes that ended too soon. Other participants had general fears about the future. One youth said, ‘I'm not scared of the job market. I'm just scared – I don't know why, but I just don't like thinking about the future’. Another admitted that jobs were one aspect of adulthood that she had concerns about:</p> <p>Becoming an adult for me is like a big step…because I may have to get a job. I never had a job that pays. I do a lot of chores around the house, and I don't feel like I'm ready to become an adult yet…I'm scared to have my first job because I don't want to get fired, and I don't want to work in the evenings because my medication just wears off.</p> <p>Adolescents seemed reluctant to talk to their caregivers about work challenges and knew that their caregivers also had expectations about their future careers. One participant stated:</p> <p>Well, I don't talk to my parents because it [future goals] changes and I'm afraid that they don't understand…It's just the fact that I keep quite a bit from my parents. I don't let them know too much about what I've been up to.</p> <p>Not all participants clearly stated this reluctance, but the group seemed to have a general consensus regarding the difficulty in sharing fears and ideas about becoming an adult with their caregivers.</p> <hd id="AN0110081878-12">Discussion</hd> <hd id="AN0110081878-13">Overview of findings</hd> <p>Our findings provide a great deal of information about the transition process from adolescence to adulthood for those living with ASD. Both youth and caregivers focused on topics related to general transition, social, education and vocation needs. Although each topic was important to participants in various ways, education and vocation needs were on the forefront of participant's minds. Within these topic areas, we identified several key findings. Caregivers identified several unmet needs and provided recommendations for how specific services could fill in these gaps. The lack of educational and employment opportunities for adolescents with ASD was clearly stated by both youth and their caregivers. Lastly, it is clear that caregiver's expectations and perspectives of their youth's hopes, goals and challenges are not aligned with the youth's directly, and further, the youth's anxiety related to this topic seems to prevent them from communicating with their caregivers about this issue.</p> <p>Caregivers reported feeling overwhelmed, anxious and in great need of a break. Transitioning into adulthood was uncharted territory for them and few had access to support programmes which accelerated their fears and anxiety. In nearly all qualitative studies on caregivers with children with intellectual disability, particularly ASD, caregiver stress is an overarching theme (Abbeduto et al. [<reflink idref="bib1" id="ref33">1</reflink>] ; Rapanaro et al. [<reflink idref="bib32" id="ref34">32</reflink>] ; Docherty & Reid [<reflink idref="bib11" id="ref35">11</reflink>] ; Phelps et al. [<reflink idref="bib31" id="ref36">31</reflink>] ; Kuhaneck et al. [<reflink idref="bib20" id="ref37">20</reflink>] ). As children with intellectual disability age, stress builds as caregivers worry about how their youth will function in the adult world, who will help them and what will happen to them in the future (Docherty & Reid [<reflink idref="bib11" id="ref38">11</reflink>] ; Phelps et al. [<reflink idref="bib31" id="ref39">31</reflink>] ; Carbone et al. [<reflink idref="bib7" id="ref40">7</reflink>] ). We found that caregivers had few outlets to discuss these problems, get assistance and were in great need of respite care to provide occasional breaks. This finding is extremely important as previous research demonstrates a link between parental stress, anxiety and depression (Sapolsky [<reflink idref="bib34" id="ref41">34</reflink>] ; Abbeduto et al. [<reflink idref="bib1" id="ref42">1</reflink>] ).</p> <p>To manage these challenges, caregivers reported trying to get more information about the transition process and taking on more responsibility. They reported taking care of all daily activities for their youth. Similar to previous research, this 24‐h, 7‐day‐a‐week job was draining and took its physical and emotional toll on caregivers (Levine et al. [<reflink idref="bib22" id="ref43">22</reflink>] ; Larson [<reflink idref="bib21" id="ref44">21</reflink>] ). Although having this level of responsibility was detrimental, caregivers also reported feeling proud and reassured that they supported their youth or promoted their success.</p> <p>Young adults with ASD were similarly overwhelmed by these new challenges and adult responsibilities. The literature on youth with ASD is not as extensive as that for their caregivers but does indicate increased levels of anxiety and depression, as well as the need for mental health services during this transition (Hendricks & Wehman [<reflink idref="bib14" id="ref45">14</reflink>] ; Ohio Center of Autism & Low Incidence [<reflink idref="bib30" id="ref46">30</reflink>] ). Many youth within our study reported stress and concern about the future. They dealt with this anxiety and stress by shutting down, avoiding subjects related to transitioning and letting their caregivers take control of the situation.</p> <p>Adolescents agreed that their caregivers controlled most of the activities within their lives, but they were not sure how to change this. Some reported that they did not want to change this and that they were comforted by the routine. Previous studies examining independence issues among youth with ASD found that they wanted more independence than they currently had and took pride in being ‘incharge’ of agency supports (Humphrey & Lewis [<reflink idref="bib16" id="ref47">16</reflink>] ; Rossetti et al. [<reflink idref="bib33" id="ref48">33</reflink>] ). Unlike previous research, this study indicated that motivation, comfort and fear might be inhibiting youth with ASD from taking a more active role.</p> <hd id="AN0110081878-14">Social transition challenges</hd> <p>This is one of the first studies to examine caregiver and adolescents with ASD's perspectives on the youth's social relationships and needs. Youth and caregivers expressed divergent opinions when discussing these social issues. In general, young people reported positive social relationships and noted their importance in helping them think about the future and solve problems. Similar to previous research, youth described the benefit of social connections, but young adults within this study did not describe isolation issues as identified in other studies (Humphrey & Lewis [<reflink idref="bib16" id="ref49">16</reflink>] ; Muller et al. [<reflink idref="bib27" id="ref50">27</reflink>] ). Caregivers reported their youth experienced significant challenges with social relationships and discussed their inability to help, particularly related to romantic relationships. They feared this would get worse with age and did not know what type of services they could utilize for assistance. Many discussed needing a buddy system to help their children transition. Similar to previous research, caregivers also reported that social stigma affected both social relationships and employment options (Eaves & Ho [<reflink idref="bib12" id="ref51">12</reflink>] ; Hendricks & Wehman [<reflink idref="bib14" id="ref52">14</reflink>] ; Phelps et al. [<reflink idref="bib31" id="ref53">31</reflink>] ; Graetz [<reflink idref="bib13" id="ref54">13</reflink>] ; Young [<reflink idref="bib38" id="ref55">38</reflink>] ).</p> <hd id="AN0110081878-15">Education and vocation transition challenges</hd> <p>The vast majority of young adults and caregivers reported unmet needs related to the transition to adulthood. Several youth and caregivers acknowledged the benefit of a few of the educational and vocational services they utilized, but all stated that most services were either not helpful or unavailable. This supports previous research showing limited post‐secondary opportunities for young adults with intellectual disability (Rapanaro et al. [<reflink idref="bib32" id="ref56">32</reflink>] ).</p> <p>With regard to educational achievement, both caregivers and youth agreed that young people had the ability to succeed in post‐secondary education but still faced many obstacles. Caregivers, particularly those with post‐high school youth, noted the lack of support for students with ASD in college. They discussed the special needs of their youth, such as the need for mentors to model appropriate behaviours, time management techniques, roommate etiquette and social connectedness. These findings build on research by Webb et al.' ([<reflink idref="bib37" id="ref57">37</reflink>] ) who reported areas of need in: self‐determination, accommodations, social skills and assistive technology for youth with ASD to succeed in college.</p> <p>Although caregivers of youth still in high school were more optimistic about their youth's success in college, none of the caregivers within our study knew where to access college support services which increased anxiety across the board. Caregivers of post‐secondary youth described experiences of failure as some youth had recently dropped out of college but were still working to help and motivate their youth to achieve this goal. Similarly, most adolescents desired to attend college but did not understand how to get there. They had high ideals but no action plan. The multiple steps and long timeline worried many youth, as described previously, this lead to avoidance behaviour.</p> <p>Employment was a major concern for caregivers and youth as well. Each group expressed a strong desire for fulfilling employment but struggled to meet this goal. Nearly all caregivers reported negative views of the current vocational training and employment opportunities. While caregivers of post‐secondary youth had examples of challenges and negative experiences, caregivers of youth currently in high school were knowledgeable about lack of services and challenges. Similar to previous findings, youth and caregivers reported vocational training did not facilitate employment (Cameto et al. [<reflink idref="bib6" id="ref58">6</reflink>] ; Ohio Center of Autism and Low Incidence [<reflink idref="bib30" id="ref59">30</reflink>] ). We showed that in most cases, caregivers helped youth obtain employment through their connections and networking. For caregivers who had young adults in the work force (n = 13), the consensus was that there were jobs available, but good jobs for youth with ASD were difficult to attain. Most young people were previously or currently employed at cleaning‐related jobs or employed as part‐time workers. Previous research also found youth and adults with ASD are usually employed in sheltered, supported or part‐time work (Cameto et al. [<reflink idref="bib6" id="ref60">6</reflink>] ; Eaves & Ho [<reflink idref="bib12" id="ref61">12</reflink>] ; Graetz [<reflink idref="bib13" id="ref62">13</reflink>] ). Caregivers report stigma and lack of employer understanding as the cause of this limited employment.</p> <hd id="AN0110081878-16">Divergent views and expectations</hd> <p>Collecting data from both caregivers and youth with ASD was a novel methodology and provided great insight into each group's views and expectations, as well as how those views and expectations were aligned. Even though caregivers and youth were in different focus groups, both groups often gave similar responses to the questions posed. When differences were observed, caregivers seemed to underestimate the youth's desire and motivation to achieve independence. It was clear that both groups have predetermined notions of what the other was thinking and feeling, neither of which were always accurate. Similarly, based on the youth's perspective, communication between them and their caregivers was lacking. Several youth thought their caregiver's education and employment expectations were different than their own and unreasonable. Sadly, they reported shutting down and avoiding conversations about these differences instead of talking about it with their caregivers. The same avoidance to discuss issues with caregivers was expressed when adolescents talked about the challenges and fears they experienced when thinking about becoming an adult. This habit of avoiding uncomfortable and challenging conversations seems typical of people with ASD but needs to be explored in more detail. Additionally, future research is needed to specifically examine the communication patterns between caregivers and youth with ASD to determine whether the differences in views we observed truly exist.</p> <hd id="AN0110081878-17">Limitations</hd> <p>Our study had several limitations. The findings might not capture the experiences of youth or caregivers who differ from our study population, including those in more urban areas or racial/ethnic minorities. In addition, our sample only included two female young adults, where the majority of caregivers (n = 17) were women. Although the focus group format worked relatively well for the youth, the group dialogue was sometimes confusing and overwhelming for participants. The variant functional levels of young people within our study provided unique perspectives recommended within the literature (Humphrey & Lewis [<reflink idref="bib16" id="ref63">16</reflink>] ; Kaehne & O'Connell [<reflink idref="bib17" id="ref64">17</reflink>] ). Although this was an asset, it also created functional and logistical challenges to the focus group format. Youth with variant communication levels were not able to interact with each other, although each interacted well with the facilitator. Utilizing an individual interview, in addition to focus groups, might increase participation from some adolescents. Conducting qualitative research with youth with ASD is a new but much needed area of study (Kaehne & O'Connell [<reflink idref="bib17" id="ref65">17</reflink>] ).</p> <hd id="AN0110081878-18">Implications for practice</hd> <p>Within this study, we identified specific service needs, caregiver and youth communication patterns, areas of stigmatization, and youth's issues with goal setting, motivation and anxiety. Specific service improvement and expansion needs include: respite care, care and service coordination, peer mentorship for youth, college support services, and enhanced vocational support. Further, the general public must be educated on what autism is, how it varies by individual and how it may or may not affect functioning and ability level. This will go a long way to reduce stigma and increase opportunity for youth and adults with ASD. Although the high school education system and IEPs specifically were supported by most caregivers, the education system would be greatly improved by developing specific post‐secondary education and vocation plans with both youth and caregiver input. As our research indicates, youth with ASD have a great deal to contribute to discussions about their future. To support increased independence and respect their autonomy, the youth's thoughts and opinions should be central to this planning process. We believe this knowledge will help move the field forward by designing better transition programmes and more inclusive study methodology.</p> <hd id="AN0110081878-19">Conclusion</hd> <p>It is very clear that much is needed to prepare youth with ASD and their caregivers for the transition to adulthood. Although services and safety nets for children with ASD have been well established, transitional services for young adults are extremely lacking. As a result, many caregivers and youth are needlessly suffering, which is why their perspectives should be taken into consideration when developing programmes in the future. Educators and vocational service providers must understand the individual needs and strengths of youth with ASD, as well as take into consideration the individuality of each person they serve.</p> <hd id="AN0110081878-20">Acknowledgments</hd> <p>We would like to thank the participants for sharing their perspectives; Jacqueline Hawks, Katie Dunn and Brooke Schuppan for helping lead the focus groups; and Molly Baker, Mark Child and Sabrina Abramovitz for their assistance in preparing the manuscript.</p> <hd id="AN0110081878-21">Conflict of Interest</hd> <p>Authors do not have a conflict of interest related to any content reported within this manuscript.</p> <hd id="AN0110081878-22">Source of Funding</hd> <p>Funding for this project was obtained from the Health Resources and Services Administration, Maternal and Child Health Bureau, Grant number H6MMC11059 (PI J. Farmer).</p> <hd id="AN0110081878-23">1 Appendix</hd> <hd id="AN0110081878-24">Parent Focus Group Questions</hd> <p>Your children are between the ages of 16 and 22, so I want to start the discussion by talking about their transition to becoming an adult. What do you feel must be done to help your child get ready for adulthood?</p> <p>Facilitator – prompt for the following if needed:</p> <p>What kinds of preparations are you making to help your child live independently (e.g., developing skills related to housekeeping, money management, and self‐advocacy; talking about transportation and residential options)?</p> <p>What kinds of preparations are you making to help your child with education and training options after high school (e.g., college and career training)?</p> <p>What kinds of preparations are you making to help your child begin working (e.g., employment options)?</p> <p>What kinds of preparations are you making to help your child with adult services and benefits planning?</p> <p>Is there anything else you want to add about getting your child ready to become an adult?</p> <p>What kind of help does your child need as he/she becomes an adult? Does he/she get the help she needs? How or how not?</p> <p>Facilitator – as a probe you could follow‐up with some respondents with:</p> <p>‘Describe a specific situation in which your child was able to get needed help’, or</p> <p>‘Describe a specific situation in which your child did not get needed help. What went wrong?’</p> <p>What aspect(s) of your child's transition to adulthood do you feel most confident about?</p> <p>There are a lot of things to think about as your child becomes an adult –living independently, education and training after high school, employment, and adult services and benefits planning. Does anyone help you and your child plan for these changes? Who would you like to help you with this?</p> <p>When do you think parents should start discussing and preparing for their child's transition to adulthood?</p> <p>Facilitator – go around the room again.</p> <p>Please summarize the most imprtant thing you want to say about transition, etc. Is there anything that you came here today to say but did not get to say yet?</p> <hd id="AN0110081878-25">Youth Focus Group Questions</hd> <p>As you get older you will be taking on more and more adult responsibilities, so I want to start the discussion by talking about your transition to becoming an adult. What do you feel must be done to help you get ready for adulthood?</p> <p>Facilitator – prompt for the following if needed (for each question, address group and then individuals if needed):</p> <p>What kinds of preparations are you making so you can live independently (e.g., developing skills related to housekeeping, money management, and self‐advocacy; planning for transportation and residential options)?</p> <p>What kinds of preparations are you making so you can continue your education and training options after high school (e.g., college and career training)?</p> <p>What kinds of preparations are you making so you can begin working (e.g., employment options)?</p> <p>What kinds of preparations are you making related to adult services and benefits planning?</p> <p>Is there anything else you want to talk about regarding becoming an adult?</p> <p>What help do you need the most to as you become an adult? Do you get the help you need? How or how not?</p> <p>Facilitator – as a probe you could follow‐up with some respondents with:</p> <p>‘Describe a specific situation in which someone gave you the help you needed.’, or</p> <p>‘Describe a specific situation in which you could not get the help you needed. What went wrong?’</p> <p>What aspect(s) of becoming an adult do you feel most confident about?</p> <p>There are a lot of things to think about as prepare for your future – healthcare, living independently, education and training after high school, employment, and adult services and benefits planning. Does anyone help you plan for these changes? Who would you like to help you with this?</p> <p>When do you think youth and their families should start discussing and preparing for this transition to adulthood? When would you recommend other youth begin thinking about these issues?</p> <p>Facilitator – go around the room again.</p> <p>Please summarize the most important thing you want to say about becoming an adult, etc. Is there anything that you came here today to say but did not get to say yet?</p> <ref id="AN0110081878-26"> <title>References</title> <blist> <bibl id="bib1" idref="ref33" type="bt">1</bibl> <bibtext>Abbeduto L., Seltzer M. M., Shattuck P., Krauss M. W., Orsmond G. & Murphy M. M. ( 2004 ) Psychological well‐being and coping in mothers of youths with autism, Down syndrome, or fragile X syndrome. American Journal of Mental Retardation 109, 237 – 254. </bibtext> </blist> <blist> <bibl id="bib2" idref="ref8" type="bt">2</bibl> <bibtext>American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians. ( 2002 ) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110 ( 6 Pt 2 ), 1304 – 1306. </bibtext> </blist> <blist> <bibl id="bib3" idref="ref4" type="bt">3</bibl> <bibtext>American Psychiatric Association. ( 2000 ) Diagnostic and Statistical Manual of Mental Disorders. 4th edn. American Psychiatric Publishing, Arlington, VA. </bibtext> </blist> <blist> <bibl id="bib4" idref="ref15" type="bt">4</bibl> <bibtext>Billstedt E., Gillberg I. C. & Gillberg C. ( 2005 ) Autism after adolescence: population‐based 13‐ to 22‐year follow‐up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders 35, 351 – 360. </bibtext> </blist> <blist> <bibl id="bib5" idref="ref7" type="bt">5</bibl> <bibtext>Blum R. W., Garell D., Hodgman C. H., Jorissen T. W., Okinow N. A., Orr D. P. & Slap G. B. ( 1993 ) Transition from child‐centered to adult health‐care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health 14, 570 – 576. </bibtext> </blist> <blist> <bibl id="bib6" idref="ref12" type="bt">6</bibl> <bibtext>Cameto R., Levine P., Wagner M. ( 2004 ) Transition Planning for Students with Disabilities: A Special Topic Report of Findings from the National Longitudinal Transition Study‐2 (NLTS2). Office of Special Education Programs, U.S. Department of Education, Menlo Park, CA. </bibtext> </blist> <blist> <bibl id="bib7" idref="ref40" type="bt">7</bibl> <bibtext>Carbone P. S., Behl D. D., Azor V. & Murphy N. A. ( 2010 ) The medical home for children with autism spectrum disorders: parent and pediatrician perspectives. Journal of Autism and Developmental Disorders 40, 317 – 324. </bibtext> </blist> <blist> <bibl id="bib8" idref="ref10" type="bt">8</bibl> <bibtext>Carter E. W., Austin D. & Trainor A. A. ( 2011 ) Predictors of postschool employment outcomes for young adults with severe disabilities. Journal of Disability Policy Studies 23, 50 – 63. </bibtext> </blist> <blist> <bibl id="bib9" idref="ref29" type="bt">9</bibl> <bibtext>Charmaz K. ( 2006 ) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications, London, UK. </bibtext> </blist> <blist> <bibl id="bib10" idref="ref2" type="bt">10</bibl> <bibtext>Coury D., Jones N. E., Klatka K., Winklosky B. & Perrin J. M. ( 2009 ) Healthcare for children with autism: the Autism Treatment Network. Current Opinion in Pediatrics 21, 828 – 832. </bibtext> </blist> <blist> <bibl id="bib11" idref="ref35" type="bt">11</bibl> <bibtext>Docherty J. & Reid K. ( 2009 ) ‘What's the next stage?’ Mothers of young adults with down syndrome explore the path to independence: a qualitative investigation. Journal of Applied Research in Intellectual Disabilities 22, 458 – 467. </bibtext> </blist> <blist> <bibl id="bib12" idref="ref17" type="bt">12</bibl> <bibtext>Eaves L. C. & Ho H. H. ( 2008 ) Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders 38, 739 – 747. </bibtext> </blist> <blist> <bibl id="bib13" idref="ref54" type="bt">13</bibl> <bibtext>Graetz J. E. ( 2010 ) Autism grows up: opportunities for adults with autism. Disability & Society 25, 33 – 47. </bibtext> </blist> <blist> <bibl id="bib14" idref="ref9" type="bt">14</bibl> <bibtext>Hendricks D. R. & Wehman P. ( 2009 ) Transition from school to adulthood for youth with autism spectrum disorders: review and recommendations. Focus on Autism and Other Developmental Disabilities 24, 77 – 88. </bibtext> </blist> <blist> <bibl id="bib15" idref="ref5" type="bt">15</bibl> <bibtext>Holtz K. D., Owings N. M. & Ziegert A. K. ( 2006 ) Life Journey through Autism: A Guide for Transition to Adulthood. Danya International, INC., Silver Spring, MD. </bibtext> </blist> <blist> <bibl id="bib16" idref="ref20" type="bt">16</bibl> <bibtext>Humphrey N. & Lewis S. ( 2008 ) ‘Make me normal’: the views and experiences of pupils on the autistic spectrum in mainstream secondary schools. Autism: The International Journal of Research and Practice 12, 23 – 46. </bibtext> </blist> <blist> <bibl id="bib17" idref="ref21" type="bt">17</bibl> <bibtext>Kaehne A. & O'Connell C. ( 2010 ) Focus groups with people with learning disabilities. Journal of Intellectual Disabilities 14, 133 – 145. </bibtext> </blist> <blist> <bibl id="bib18" idref="ref6" type="bt">18</bibl> <bibtext>King G. & Meyer K. ( 2006 ) Service integration and co‐ordination: a framework of approaches for the delivery of co‐ordinated care to children with disabilities and their families. Child: Care, Health and Development 32, 477 – 492. </bibtext> </blist> <blist> <bibl id="bib19" idref="ref28" type="bt">19</bibl> <bibtext>Krueger R. ( 1994 ) Focus Groups. Sage, Thousand Oaks. </bibtext> </blist> <blist> <bibl id="bib20" idref="ref37" type="bt">20</bibl> <bibtext>Kuhaneck H. M., Burroughs T., Wright J., Lemanczyk T. & Darragh A. R. ( 2010 ) A qualitative study of coping in mothers of children with an autism spectrum disorder. Physical & Occupational Therapy in Pediatrics 30, 340 – 350. </bibtext> </blist> <blist> <bibl id="bib21" idref="ref44" type="bt">21</bibl> <bibtext>Larson E. ( 2010 ) Ever vigilant: maternal support of participation in daily life for boys with autism. Physical & Occupational Therapy in Pediatrics 30, 16 – 27. </bibtext> </blist> <blist> <bibl id="bib22" idref="ref43" type="bt">22</bibl> <bibtext>Levine P., Marder C. & Wagner M. ( 2004 ) Services and Supports for Secondary School Students With Disabilities. Available at: <ulink href="http://www.nlts2.org/reports/2004%5f05/index.html">http://www.nlts2.org/reports/2004%5f05/index.html</ulink> (accessed on 01 February 2014) </bibtext> </blist> <blist> <bibl id="bib23" idref="ref16" type="bt">23</bibl> <bibtext>Levy A. & Perry A. ( 2011 ) Outcomes in adolescents and adults with autism: a review of the literature. Research in Autism Spectrum Disorder 5, 1271 – 1282. </bibtext> </blist> <blist> <bibl id="bib24" idref="ref32" type="bt">24</bibl> <bibtext>Lincoln Y. & Guba E. ( 1985 ) Naturalistic Inquiry. Sage, London. </bibtext> </blist> <blist> <bibl id="bib25" idref="ref27" type="bt">25</bibl> <bibtext>Lord C., Rutter M. & Le Couteur A. ( 1994 ) Autism diagnostic interview‐revised: a revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders 24, 659 – 685. </bibtext> </blist> <blist> <bibl id="bib26" idref="ref3" type="bt">26</bibl> <bibtext>Mazurek M. O. & Kanne S. M. ( 2010 ) Friendship and internalizing symptoms among children and adolescents with ASD. Journal of Autism and Developmental Disorders 40, 1512 – 1520. </bibtext> </blist> <blist> <bibl id="bib27" idref="ref25" type="bt">27</bibl> <bibtext>Muller E., Schuler A. & Yates G. B. ( 2008 ) Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism: The International Journal of Research and Practice 12, 173 – 190. </bibtext> </blist> <blist> <bibl id="bib28" idref="ref23" type="bt">28</bibl> <bibtext>Murphy E., Clegg J. & Almack K. ( 2011 ) Constructing adulthood in discussions about the futures of young people with moderate‐profound intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 24, 63 – 73. </bibtext> </blist> <blist> <bibl id="bib29" idref="ref1" type="bt">29</bibl> <bibtext>Myers S. M. & Johnson C. P. ( 2007 ) Management of children with autism spectrum disorders. Pediatrics 120, 1162 – 1182. </bibtext> </blist> <blist> <bibl id="bib30" idref="ref13" type="bt">30</bibl> <bibtext>Ohio Center of Autism and Low Incidence (Producer). ( 2009 ) OCALI Transition Focus Groups. Available at: <ulink href="http://www.ocali.org/%5farchive/transition/">http://www.ocali.org/%5farchive/transition/</ulink> (accessed on 01 February 2014) </bibtext> </blist> <blist> <bibl id="bib31" idref="ref36" type="bt">31</bibl> <bibtext>Phelps K. W., McCammon S. L., Wuensch K. L. & Golden J. A. ( 2009 ) Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual Developmental Disability 34, 133 – 141. </bibtext> </blist> <blist> <bibl id="bib32" idref="ref34" type="bt">32</bibl> <bibtext>Rapanaro C., Bartu A. & Lee A. H. ( 2008 ) Perceived benefits and negative impact of challenges encountered in caring for young adults with intellectual disabilities in the transition to adulthood. Journal of Applied Research in Intellectual Disabilities 21, 24 – 47. </bibtext> </blist> <blist> <bibl id="bib33" idref="ref48" type="bt">33</bibl> <bibtext>Rossetti Z., Ashby C., Arndt K., Chadwick M. & Kasahara M. ( 2008 ) “I like others to not try to fix me”: agency, independence, and autism. Journal of Intellectual Developmental Disability 46, 364 – 375. </bibtext> </blist> <blist> <bibl id="bib34" idref="ref41" type="bt">34</bibl> <bibtext>Sapolsky R. ( 2003 ) Taming stress. Scientific American 289, 86 – 95. </bibtext> </blist> <blist> <bibl id="bib35" idref="ref14" type="bt">35</bibl> <bibtext>Seltzer M. M., Shattuck P., Abbeduto L. & Greenberg J. S. ( 2004 ) Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews 10, 234 – 247. </bibtext> </blist> <blist> <bibl id="bib36" idref="ref26" type="bt">36</bibl> <bibtext>Volkmar F. R., Cicchetti D. V., Dykens E., Sparrow S. S., Leckman J. F. & Cohen D. J. ( 1988 ) An evaluation of the Autism Behavior Checklist. Journal of Autism and Developmental Disorders 18, 81 – 97. </bibtext> </blist> <blist> <bibl id="bib37" idref="ref57" type="bt">37</bibl> <bibtext>Webb K. W., Patterson K. B. & Syverud S. M. ( 2008 ) Evidenced based practices that promote transition to postsecondary education: listening to a decade of expert voices. Exceptionality: A Special Education Journal 16, 192 – 206. </bibtext> </blist> <blist> <bibl id="bib38" idref="ref55" type="bt">38</bibl> <bibtext>Young L. L. ( 2012 ) Validating difference and counting the cost of exclusion in the lives of people who identify as on the autistic spectrum. Disability & Society 27, 291 – 294. </bibtext> </blist> </ref> <aug> <p>By Nancy C. Cheak‐Zamora; Michelle Teti and Jennifer First</p> </aug>
Header DbId: eric
DbLabel: ERIC
An: EJ1076515
AccessLevel: 3
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: 'Transitions Are Scary for Our Kids, and They're Scary for Us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Cheak-Zamora%2C+Nancy+C%2E%22">Cheak-Zamora, Nancy C.</searchLink><br /><searchLink fieldCode="AR" term="%22Teti%2C+Michelle%22">Teti, Michelle</searchLink><br /><searchLink fieldCode="AR" term="%22First%2C+Jennifer%22">First, Jennifer</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Nov 2015 28(6):548-560.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 13
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2015
– Name: SourceSuprt
  Label: Sponsoring Agency
  Group: SrcSuprt
  Data: Health Resources and Services Administration (DHHS), Maternal and Child Health Bureau
– Name: NumberContract
  Label: Contract Number
  Group: NumCntrct
  Data: H6MMC11059
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Adolescents%22">Adolescents</searchLink><br /><searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br /><searchLink fieldCode="DE" term="%22Pervasive+Developmental+Disorders%22">Pervasive Developmental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Focus+Groups%22">Focus Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Grounded+Theory%22">Grounded Theory</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety%22">Anxiety</searchLink><br /><searchLink fieldCode="DE" term="%22Fear%22">Fear</searchLink><br /><searchLink fieldCode="DE" term="%22Change%22">Change</searchLink><br /><searchLink fieldCode="DE" term="%22Adjustment+%28to+Environment%29%22">Adjustment (to Environment)</searchLink><br /><searchLink fieldCode="DE" term="%22Needs%22">Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Motivation%22">Motivation</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Education%22">Access to Education</searchLink><br /><searchLink fieldCode="DE" term="%22Equal+Opportunities+%28Jobs%29%22">Equal Opportunities (Jobs)</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.12150
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. Method: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. Results: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. Conclusions: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2015
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1076515
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1076515
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.12150
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 13
        StartPage: 548
    Subjects:
      – SubjectFull: Adolescents
        Type: general
      – SubjectFull: Autism
        Type: general
      – SubjectFull: Pervasive Developmental Disorders
        Type: general
      – SubjectFull: Focus Groups
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Grounded Theory
        Type: general
      – SubjectFull: Anxiety
        Type: general
      – SubjectFull: Fear
        Type: general
      – SubjectFull: Change
        Type: general
      – SubjectFull: Adjustment (to Environment)
        Type: general
      – SubjectFull: Needs
        Type: general
      – SubjectFull: Motivation
        Type: general
      – SubjectFull: Access to Education
        Type: general
      – SubjectFull: Equal Opportunities (Jobs)
        Type: general
    Titles:
      – TitleFull: 'Transitions Are Scary for Our Kids, and They're Scary for Us': Family Member and Youth Perspectives on the Challenges of Transitioning to Adulthood with Autism
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Cheak-Zamora, Nancy C.
      – PersonEntity:
          Name:
            NameFull: Teti, Michelle
      – PersonEntity:
          Name:
            NameFull: First, Jennifer
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 11
              Type: published
              Y: 2015
          Identifiers:
            – Type: issn-print
              Value: 1360-2322
          Numbering:
            – Type: volume
              Value: 28
            – Type: issue
              Value: 6
          Titles:
            – TitleFull: Journal of Applied Research in Intellectual Disabilities
              Type: main
ResultId 1