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Supporting Adolescents with ASD Transition to Adulthood

How to solve the problems of our generations

By Matthew PrimousPublished 3 years ago 21 min read
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Supporting Adolescents with ASD Transition to Adulthood
Photo by Michał Parzuchowski on Unsplash

Factors Supporting Adolescents with ASD Transition to Adulthood

Autism or Autism Spectrum Disorder (ASD) is prevalent among the U.S. population. According to the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (2013), about 1% of the U.S. children and adults experience ASD. Specifically, 1 in 68 adolescents has ASD (Anderson & Butt, 2017). Even though the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5) asserts that research has not found specific causes of mental illness, it has addressed some consequences including the dropout rate among adolescents (e.g., Anderson & Butt, 2017; Goldstein et al., 2018) thus resulting in low quality of life of adolescents with ASD compared to those without ASD (Goldstein et al., 2018). Moreover, even though transition services for adolescents with ASD are expanding, the outcomes remain bleak. Transition services focused on developing daily living skills related to executive functioning for goal attainment, follow-through, as well as managing self-care needs should be a priority (e.g. Alverson, Lindstrom, & Hirano, 2015). High school transition services designed to develop and support youth's internal motivation, disability awareness, family supports, and clear post-school goals are crucial for them to be college and career ready.

However, the transition from adolescence to adulthood often includes a series of new challenges such as living independently, gaining employment, attaining postsecondary education, building social relationships, and forming new roles and identities. When these adolescents enter college, they are often stressed, and their lives are disruptive because of the requirement that college can take on them. These adolescents need support from others to ease such stress and obtain skills necessary for success. Success can be defined as vocational training or college for adolescents with ASD. Thus, this paper aims to review the literature on the role of familial factors, school services’ factor, and college services and vocational training. In this paper, I first explain the familial role in their adolescents’ transition following a discussion about how education influences adolescents’ transition in adulthood. I conclude with talking about recommendations from the research.

Familial Factor

This section explains the role of families in adolescents’ overall success. Families encourage adolescents’ independence and self-advocacy. Families can also contribute to dealing with the health challenges facing adolescents, such as social deficits and learning disabilities.

Families tend to find services for their adolescents with ASD to achieve a successful transition to adulthood recognizing the challenges facing their children. Parents, siblings, and friends reported some major challenges working independently, gaining employment, attaining postsecondary education, building social relationships, and forming new roles and identities (e.g., Cheak-Zamora, First, & Teti 2016; Alverson et al., 2015; Seltzer & Taylor, 2015). In their study, Cheung et al. (2012) found that because parents were aware of these challenges, they advocated early childhood intervention that facilitated the successful transition into adulthood. For example, families engaged their children with ASD in many services such as special education. More specifically, some adolescents with ASD graduated from college or vocational training. Also, Alverson et al. (2015) examined the social skills of adolescents with ASD especially in the area of friendships and found that adolescents were socially isolated, a problem that parents realized. As a result, parents reported they became closer and interacted more often with their children. According to DaWalt, Greenberg, and Mailick (2018), when families of adolescents with ASD are warm and positive toward their children, “their behavioral problems and autism symptoms are reduced” (p. 252). That is, families play a role in dealing with their children with ASD social issues. These interventions seem to be effective because of the successful transition from childhood into adulthood.

However, the socioeconomic status of families influences their children’s transition. The median income for families with adolescents with ASD range between $50,000 and $80,000 (Chiang, Cheung, Hickson, et al., 2012; Taylor & Seltzer, 2008). Parents in these studies reported that they were able to support their children with ASD and offer them services for independence. For example, families offered their children with ASD to participate in postsecondary education (Chiang et al., 2012). Parents also concede more likely to meet with teachers to set post-education goals (DaWalt, Greenberg, & Mailick 2018). DaWalt et al. explained that families that can afford these services understood their adolescents’ IQ and daily living skills, thus made use of their affordability to offer services. In contrast, families with $50,000 and under with adolescents with ASD could not help their children with ASD to participate in postsecondary education (Chiang et al., 2012). Chiang et al. further shows that most parents with low income expected their child to exit out of high school and that they believe that their adolescents with ASD are getting the services needed in school, therefore parents are less involved with their adolescents with ASD. Unlike in Chiang et al, (2012), Anderson and Butt (2017) found a few parents, who were low income and with adolescents with ASD, were involved in the education aspiration of their children. Therefore, the socioeconomic status of families can determine their involvement in the success of adolescents with ASD.

Most studies argue that families understand the challenges facing their adolescents with ASD. These challenges prevent adolescents with ASD from achieving a successful transition to adulthood. Thus, parents’ acknowledging such challenges is key in the transition. However, families’ socioeconomic status can also affect their ability to help their children with ASD to a successful transition. In other words, the socioeconomic status of families can determine the types of services adolescents with ASD can receive and identify the extent to which families are involved in their adolescents with ASD.

School Services’ Factor

This section explains the role of school services in the transition process of adolescents with ASD. Since educators are involved in the school services, they need to be prepared in advance with their curriculum and classroom, to prepare students with ASD (e.g. Bottema-Beutel et al., 2014; Cheak-Zamora, First, Teti, 2016). School services are dependent on parental advocacy and involvement in the quality of transition planning (Anderson & Butt, 2017).

Schools are required by law to provide services to adolescents with ASD to help them become independent. Two major programs are designed and offered to help adolescents with ASD in schools include: First, the Individualized Education Program (IEP) under the Individuals with Disabilities Education Act (IDEA). IEP is a document establishing special education and related services, and adolescents with ASD can qualify if their disability proves to have a negative impact on educational performance (Anderson & Butt, 2017; Camerena & Sarigiani, 2009). Second, the "504 Plan of the Rehabilitation Act" (Thereafter "504 Plan") aims at preventing disability-based discrimination (Anderson & Butt, 2017). However, IEP is preferred because it helps more in the transition of adolescents with ASD (Anderson & Butt, 2017; Camerena & Sarigiani, 2009). Anderson and Butt (2017) showed that school services can offer less assistance and services with 504 Plan because there are less regulation and compliance. Good schools would examine high school support and create college outcomes (Anderson & Butt, 2017; Camerena & Sarigiani, 2009). In the study by Camerena and Sarigiani (2009), even when educators and school services have been denied and adolescents with ASD have been educated with their peers without disability, they had high expectations of attaining college education. Also, Camerena and Sarigiani (2009) acknowledge that from the law’s amendments, IDEA supports educational aspirations such as vocational training, comprehensive transition plan, maximize potential postsecondary opportunities, independent living as well as college aspirations with its amendments. Most of the adolescents with ASD are in general classroom settings, while some are in special education classrooms (e.g. Bottema-Beutel, 2014; Camarena & Sarigiani, 2009). The present laws mandate that educators and school staff worked with families to determine the need of their adolescents with ASD.

Adolescents with ASD need their families and educators to work together for a successful transition. Research implies that many adolescents with ASD struggle with social interaction including topic management, reciprocity, intonation, and gaze management (e.g. Gantman et al., 2012; Bottema-Beutel et al., 2013). To help reduce the gap between social skills and social expectations among adolescents with ASD, their interactions and relationships with others is important. Research found that when adolescents with ASD interact with other students, teachers, and administrators and other staff throughout the school year, their academic, social, vocational, self-determination skills improve (e.g. Cheung et al., 2011, Camarena & Sarigiani, 2009). However, some adolescents with ASD are lonely, bullied by peers, and have difficulty establishing friendships. Therefore, educators and staff must emphasize social skills as well allowing students to communicate with adolescents with ASD by using aided or unaided communication systems with adolescents with ASD (e.g. Bottema-Beutel et al., 2013; Cheak-Zamora et al., 2016). In addition, families and educators can also help their adolescents with ASD set goals for and access to employment and financial sufficiency, even though this may take an internal source of motivation to attend college, high levels of disability awareness, intentional family supports, coordinated transition planning, and clear post-school goals (e.g. Alverson et al., 2015 Cheung et al., 2011). That is, adolescents with ASD needed social (e.g., building relationships), communication (e.g., engaging in student-teacher interaction), and executive functioning (e.g., memorizing and retrieving information) skills for them to be able to transition into college (Bottema-Beutel et al., 2013, e.g. Gantman et al., 2012).

Thus, together, school services and family support can help meet the needs and challenges of adolescents with ASD. They can come up with goals that benefit the adolescent with ASD to achieve success whether it is college or vocational training. An IEP plan is constructed on concrete goals such as college or vocational training and can, therefore, aid in the adolescent with ASD’s transition plan. It helps if educators and school staff with parents start early creating goals for their adolescents with ASD. Early support can help reduce the stress of college on adolescents with ASD because they will have supports that will guide through the process. Adolescents with ASD will be confident in their support team filled with school staff and parents. It is okay if the adolescents with ASD astray from the path that their IEP set for them as long they find success in doing what makes them feel independent (e.g. Alverson et al., 2015; Cheung et al., 2012).

College Services and Vocational Training

This section will discuss the college services and vocational training available to adolescents with ASD. Their families and school services can create a goal for their adolescents with ASD to either attend college or vocational training post-high school (e.g., Alverson et al., 2015; Cheung et al., 2012). This can be done through the IEP as discussed above.

In addition to schools, colleges must provide services according to the law to adolescents with ASD. Colleges have to accommodate individuals with disabilities because of the Americans With Disabilities Act of 1990, which guarantees accommodations in public institutions for students with disabilities (e.g. Alverson et al., 2015). According to the Americans With Disabilities Act, if adolescents with ASD are considered students with disabilities, they can receive appropriate support. For example, colleges can support subsiding tuition and fees for adolescents with ASD. Also, adolescents with ASD can rely on transition teachers to assist with navigating financial aid, registration, having math labs, and writing labs, providing activities that support social engagement, technologies, and social group such as navigating appropriate classroom behavior, group discussions, and group assignments (e.g., Alverson et al., 2015; Goldstein, Hillier, Keeves, 2018).

Colleges can create focus groups and have adolescents with ASD and their families. Families and school services have to see if college is a good fit for adolescents with ASD by understanding the campus size, location, and culture as in the study with Anderson and Butt (2017). They should also look into the institution flexibility and easing in, which may mean that adolescents with ASD attend community colleges rather than larger schools and this can aid low-income families with adolescents with ASD due to costs (Anderson & Butt, 2017). Most adolescents with ASD that attend college felt that they could not take four or five classes as in Anderson and Butt’s (2017) study. Community colleges and universities offer academic advising to career planning and they have an office for disabilities, but the college’s office services are compared to 504 Plan and their services are far from IEP (Anderson & Butt, 2017). However, adolescents with ASD must be identified by their secondary school as having a disability, and there is a high ratio of adolescents refusing to show their disability. For instance, in Alverson et al.’s (2015) study, 63% of all students with disabilities refused and nearly 37% of them were students with ASD. Adolescents with ASD that attend college must identify their disability to receive college services.

Furthermore, job coaching as a type of vocational training is key in the transition of adolescents with ASD. Adolescents with ASD along with their families and school services can create a vocational training goal. According to Avellone et al. (2016), job coaches are a part of vocational training that can help adolescents with ASD apply for employment and complete their job search. Job coaches continue until adolescents with ASD secure employment or cease their search for employment. This can happen during their last year of high school for a large community business such as hospitals, government complexes, or banking center (Avellone et al., 2016). For example, in Avellone et al.’s study, adolescents with ASD rotate three 10-12 weeks about 720 hours of internship learning marketable skills while receiving supportive employment. Job coaching can help adolescents with ASD, through its usage of applied behavior analytic techniques (ABA) and specific social communication skills for success at work (e.g. Avellone et al., 2016). ABA is needed for multistep tasks, structured repeated trials for discrete tasks, behavioral rehearsal for specific social skills, visual and self-directed prompting procedures for transitioning, self-management procedures for behavioral challenges, and reinforcement for appropriate behavior (Avellone et al., 2016). In both studies, adolescents with ASD have been proven to provide excellent work ethic even though they have difficulty with social communication, which limited their employability (Avellone et al., 2016; Bennett et al., 2012).

Besides, job coaching involves technology that can help adolescents with ASD build skills and employability. For example, in Bennett et al.’s (2012) study, adolescents with ASD used Convert Audio Coaching (CAC), where they were verbal prompts to help their social skills and employability. The findings revealed increased independent living skills among adolescents with ASD while decreasing their reliance on others. Researchers have successfully used the picture and/or auditory supports on mobile devices to teach job-related skills to individuals with ASD such as gathering carts, stocking merchandise, vacuuming, food preparation, and cleaning (e.g., Bennett et al., 2012; Carreon et al., 2018). Carreon et al. investigated support on mobile devices to teach employment-related skills and this research lead to video modeling, which involves presenting a video of skill sequence in its entirety and having adolescents with ASD watch the video before engaging in the task. This has been tried in both school-based settings and community-based settings with adolescents with ASD. Many adolescents with ASD require support to learn job-related tasks and to sustain employment. Visual or auditory support with task lists, alarms, environmental adaptations, workload accommodations can be very beneficial for them (e.g. Bennett et al., 2012). Many of these supports can fade once adolescents with ASD learn their job tasks. These devices should be available to all workers at a job site so they can become permanent for adolescents with ASD to advance. This includes flexibility in use, simple and intuitive use, perceptible information, tolerance for error, low physical effort, and size and space for approach and use (e.g. Bennett et al., 2012). Examples of this are keyless entry systems, speakerphones, lever door handles, etc. Mobile devices are more desirable because they are inexpensive, used frequently which makes them more socially acceptable. They can become increasingly customize and more effective for supporting independence. The research suggests that it has been successful in using picture/auditory support with mobile devices to teach adolescents with ASD skills. Some researchers have successfully used video-based instructional support on mobile devices to teach employment-related skills. Many businesses, graduates, and professional training programs used this strategy and parents can use this in skill-building classes. Job coaching, in general, can be very important for adolescents with ASD seeking employment.

Adolescents with ASD and their families and school services can help them either attain success in college or vocational training. Adolescents with ASD must be willing to continue their IEP and identify with their disability to receive services in college. They must choose colleges that accommodate them and help them achieved success by instilling independent skills that they can use in their adulthood. On the other hand, adolescents with ASD can participate in vocational training including job coaches, which can teach adolescents with ASD while they are still in high school and post-high school how to do certain tasks. Job coaches will help adolescents with ASD to practice their skills in real environments, which in turn will increase opportu nities. Adolescents with ASD have to learn how to tolerate uncomfortable work experiences with a high level of support from their families, educators and job coaches for independence.

Conclusion and Recommendations

The paper has discussed the role of families, school services, and college services and vocational training in adolescents with ASD transition to adulthood. Families are a primary support system, whose awareness of the challenges facing their adolescents with ASD and the socioeconomic status seem to play a major effect in the transition. Two other major support system players include school and college/vocational training services are accountable by the law to provide intervention along with families. That is, schools and colleges by law must provide support, but this varies due to the adolescents with ASD accepting and verifying their disability.

Research revealed that school and college services can help adolescents with ASD develop social skills, independence, and employability (e.g., Avellone et al., 2016; Bottema-Beutel et al., 2014; Cheak-Zamora et al., 2016; Cheung et al., 2012). Also, adolescents with ASD can vary on what specific services they made need. Families along with school services must thoroughly seek college's disability office to get services. However, some colleges including community colleges and universities provide more services. Additionally, the college workload can be overbearing; most adolescents with ASD that attended college agreed that too many classes can stress them. And this may be also true for those students without disabilities. Furthermore, adolescents with ASD might choose to get vocational training. The literature recommends job coaching for adolescents with ASD as early as high school. Adolescents with ASD would be prompted by devices to learn a new job-related skill. Research indicates that many employers are willing to use these devices, which are recommended to be used by every employee and not just adolescents with ASD (Bennett et al., 2012). A specific job coaching that has been very successful is CAC; however, researchers want the technology to become more friendly and flexible to meet the needs of adolescents with ASD.

Even though some studies addressed some challenges that adolescents with ASD go through, little research has examined how adolescents with ASD can be supported in their transition in adulthood. In other words, there is also a gap in research for helping adolescents with ASD be independent and employable. Future research should explore more technology interventions and employment instruction, namely prompting strategies and reinforcements that have typically been combined and implemented as a treatment package to develop skills among this population. Even though little research examined the effects of technology interventions on adolescents with ASD employability (e.g., Avellone et al., 2016), the sample size was small. Future research should include larger random samples. Another research gap is related to race. The generalizability of the findings is limited because most of the participants and their families were Caucasians. Also, a gender gap exists. Males are diagnosed more than females and young girls may go unrecognized for having ASD rather diagnose with intellectual disabilities. Social and communication difficulties could be the reason for this. In many cases, skills such as language and social skills could be lost if not diagnosed early.

Moreover, most adolescents with ASD have low IQs and there are some with above-average IQs. According to the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition, 70% have one comorbid mental disorder. Parents and caregivers should be able to detail the history of social behaviors and language skills. There are no further findings on what specific skill can deteriorate at a later age. However, there is hope for those adolescents with ASD because individuals can continue learning and being successful throughout their lives. Besides, an IQ issue studies have found that IQ may be a determining factor in whether an adolescent with ASD attends college or vocational training. Some adolescents with ASD have a higher IQ than other adolescents with ASD. Those with a higher IQ were diagnosed with Asperberger's Syndrome until this Syndrome was combined with ASD by the American Psychiatric Association. This creates a loophole that insists IQ scores be used as a predictor of college success.

Families and school services should be included in studies to make them more generalizable. Some parents with adolescents with ASD were not together and the researchers had to use one parent, thus creating a bias and limitation due to incompletion. The gaps in the research may lead to a bias within the studies because researchers did not seek out families with low income. Therefore, the burden of socioeconomic status falls on the family and can restrain the success of adolescents with ASD. These gaps should be considered in future studies including diverse populations.

References

Alverson, C. Y., Hirano, K. A., & Lindstrom, L. E. (2019). High school to college: Transition experiences of young adults with autism. Focus on Autism & Other Developmental Disabilities, 34(1), 52–64.

Anderson, C., & Butt, C. (2017). Young adults on the autism spectrum at college: Successes and stumbling blocks. Journal of Autism & Developmental Disorders, 47(10), 3029–3039.

American Psychiatric Association. (2013). The Diagnostic manual of mental disorders (5th Edition). Washington. D.C. American Psychiatric Association.

Avellone, L., Brooke, V., Graham, C., McDonough, J., Riehle, J., Schall, C. & Wehman, P. (2017). Effects of an employer-based intervention on employment outcomes for youth

with significant support needs due to autism. Autism: The International Journal of Research & Practice, 21(3), 276–290.

Bennett, K., Honsberger, T., & Ramasamy, R. (2013). The effects of covert audio coaching on teaching clerical skills to adolescents with an autism spectrum disorder. Journal of Autism & Developmental Disorders, 43(3), 585–593.

Bonneau, W., Carreon, A., Lagerhausen, A., & Van Laarhoven, T. (2018). Comparing mobile technologies for teaching vocational skills to individuals with autism spectrum disorders and/or intellectual disabilities using universally-designed prompting systems. Journal of Autism & Developmental Disorders, 48(7), 2516–2529.

Bottema-Beutel, K., Carter, E. W., Common, E., Gustafson, J., Huber, H., Hume, K. & Sreckovic, M., Hume, K. (2014). Promoting social competence and peer relationships for adolescents with autism spectrum disorders. Remedial & Special Education, 35(2), 91–101.

Camarena, P. M., & Sarigiani, P.A. (2009). “Postsecondary educational aspirations of high-functioning adolescents with autism spectrum disorders and their parents.” Focus on Autism & Other Developmental Disabilities 24(2), 115–28.

Cheak-Zamora, N., First, J., & Teti, M. (2016). A qualitative study of stress and coping when transitioning to adulthood with autism spectrum disorder. Journal of Family Social Work, 19(3), 220–236.

Cheung, Y., Chiang, H.M., Hickson, L., Tsai, L., & Xiang, R. (2012). Predictive factors of participation in postsecondary education for high school leavers with autism. Journal of Autism & Developmental Disorders, 42(5), 685–696.

DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2018). Transitioning together: A multi-family group psychoeducation program for adolescents with ASD and their parents. Journal of Autism & Developmental Disorders, 48(1), 251–263.

Eigsti, I.-M., Fein, D. Helt, M., Orinstein, A., Stevens, M., Troyb, E., & Tyson, K. (2014). Academic abilities in children and adolescents with a history of autism spectrum disorders who have achieved optimal outcomes. Autism: The International Journal of Research & Practice, 18(3), 233–243.

Gantman, A., Kapp, S., Laugeson, E., & Orenski, K. (2012). Social skills training for young adults with high-functioning autism spectrum disorders: A randomized controlled pilot study. Journal of Autism & Developmental Disorders, 42(6), 1094–1103.

Goldstein, J., Hillier, A., Keeves, J., Mendes, E., Murphy, D., Queenan, A., & Trietsch, R. (2018). Supporting university students with an autism spectrum disorder. Autism: The International Journal of Research & Practice, 22(1), 20–28.

Seltzer, M. & Taylor, J. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism & Developmental Disorders, 41(5), 566–574.

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About the Creator

Matthew Primous

I am a Black Scholar, International Scholar, & Google Scholar, & 3-Time Eber & Wein Best Poet., Nominee for Poet of the Year, 2020 Black Author Matters Winner, 2 time Akademia Excellence Essayists,& 2022 Honorary Muckrack Journalist.

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