was on the autism spectrum and had significant learning disabilities, but was verbal and motivated to learn. He attended high school in a special class for autistic youth, but was mainstreamed part of the day with the help of an educational assistant. His mainstream courses included daily physical education. He also participated in the school canoeing club, where he was well-liked for his quirky sense of humor. He went to the movies regularly with a few of his classmates. The boys’ parents took turns driving them to the theatre. In his last year, Robert spent half days at a cooperative education placement in a local store which was within walking distance of the school. By the end of the term, he bragged that he knew the way to the shop better than his educational assistant did! Despite his learning disabilities, Robert appeared relatively high functioning in high school.
Things changed dramatically, however, when high school ended. Robert and his parents met with a guidance counselor about his post-secondary plans. As Robert’s English courses had been below college level, she advised looking into vocational schools or getting some work experience. She reassured his parents that a government-funded disability service organization would help the family explore these options. All they had to do was send in Robert’s most recent psychological evaluation. They did so a few months before his graduation.
The day before Robert graduated, a letter arrived from the disability service organization. The letter indicated that, despite Robert’s significant autism-related impairments, he was not eligible for their services as his IQ was just barely over 75. Eligibility for their services depended upon having an IQ below 75, regardless of the person’s ability to function in daily life. A local employment agency for disabled adults was recommended. Unfortunately, the worker at this agency had plenty of experience finding jobs for people with physical disabilities but no experience working with those on the autism spectrum. Furthermore, the worker refused to speak to Robert’s parents, citing Robert’s right to privacy as he had recently turned 18.
After several discouraging attempts to find work, Robert became increasingly withdrawn. He spent most of his time at home playing his favorite video game. As he did not need to get up at a regular time, he soon spent more time sleeping during the day than at night. As he snacked while playing and no longer engaged in physical activities, he gained weight. Robert’s classmates dispersed to different places after high school. Some were eligible for college, others were able to work with the disability service organization, and still others had families who owned businesses where they could work. Robert did not see any of them regularly anymore. With no social life apart from his online contacts, Robert’s verbal and social abilities declined. When his parents tried to talk to Robert, he now responded only in grunts.
Concerned about their son’s deterioration, Robert’s parents argued about how to best help him. His mother advocated an expensive private vocational school; his father argued, “He’s just lazy and lacks motivation. No further schooling will change that.” The more his parents fought, the more Robert withdrew. Soon, his younger brother started skipping school, asking, “Why does Robert get to stay home when I don’t?” There were further parental arguments about the brother’s defiance.
Alarmed at Robert’s passivity and deteriorating health, his family doctor referred him to a psychiatrist. The reason for referral was “Appears depressed. Please recommend appropriate medication.” He also referred Robert to a socialization group for autistic youth, but Robert did not attend.
What you will learn in this chapter
Robert’s story is a cautionary tale about everything that can go wrong when high school ends, but you’ll be relieved to hear that it need not be what happens to your youth. Many youth face far fewer difficulties than Robert did, and the information in this book is presented to ensure that your son or daughter is one of them!
You play a crucial role in avoiding problems and supporting a successful transition to adulthood, but you may face some obstacles. For instance, you may not be guided by your child’s school on what is needed prior to the transition, given accurate information about transitional issues, or connected with adult service providers who have experience with ASD. Moreover, as a parent you may be facing these challenges at a time when you are exhausted by years of hard work on behalf of your child with special needs, and questioning whether or not your efforts have been worthwhile. Clearly this is not an easy time for you or your child!
Nevertheless, you can help your youth navigate this life transition successfully by learning about potential problems and how they can be solved. This chapter focuses on understanding why leaving high school is a struggle for many youth on the autism spectrum, emotions parents may experience in relation to this struggle, why high-functioning individuals don’t necessarily do better than those who are low functioning, and a summary of factors and interventions which may predict a positive transition to adult life. If your youth is still in high school, you may be able to increase the latter factors to improve the chances of success. If your youth is beyond high school and struggling, return to a positive developmental course is still possible by implementing the ideas in this book and, in some cases, seeking professional help. Later in the chapter, we revisit the story of Robert and show how, even after the downward spiral he and his family experienced, a healthy transition to adulthood was still possible.
What is lost when high school ends?
If your autistic youth is already beyond the high school years, you may have a good idea of what changed when school ended. If not, you may wonder what to expect. Let’s examine what happens to many autistic youth at this time of transition, and how your experiences so far compare with this summary.
When comparing youth on the autism spectrum before and after the end of high school, researchers discovered that developmental progress did not necessarily continue. Rather, they found high rates of problem behaviors and mental health concerns, strained parent–child relationships, low rates of employment and independent living, and frequent social isolation (Jackson et al. 2018; Orsmond et al. 2013; Poon and Sidhu 2017; Taylor and Seltzer 2011a). Not all youth experienced these problems and there were certainly success stories as well, but the road to thriving in adulthood was rarely a smooth one.
These facts may sound discouraging, but they need not be if we understand what causes some youth on the autism spectrum to stop progressing or even deteriorate when high school ends while others thrive. Structure and support are two key factors which make a difference (Coury et al. 2014). Having the structure of predictable daily routines reduces anxiety and enhances emotional stability in autistic youth. When high school ends, losing school routines is disconcerting and, in some cases, overwhelming. High school structure also includes consistent expectations for academic performance and social conduct, with regular feedback on how students are doing in these areas. Many youth strive to live up to these expectations until high school ends. Then, with nothing to strive for, many become apathetic and eventually depressed. Losing high school friends and mentors can further contribute to low mood and social isolation. As shown in Robert’s example, when autistic youth deteriorate and spend excessive time at home, this lifestyle can also lead to conflict with parents and other family problems.
In many locations, support services for autistic adults are underdeveloped. For example, most post-secondary students on the autism spectrum report feeling educationally but not socially supported at college (Cai and Richdale 2016), which may contribute to their high rate of mental health problems in this setting. As Robert experienced, employment supports are also not consistently available or may not be specialized for autistic individuals. Medical and psychiatric services are accessed less often by autistic adults after they leave high school than before (Shattuck et al. 2011), often due to difficulty transitioning from child to adult services (see Chapter 6). Based on this information, there are at least two things you can do to help: think about how to structure your youth’s day after high school ends, and look into potential support services early.
