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.
What is it like for you as a parent?
When interviewed, parents of autistic, transition-aged youth reported a mixture of hopes and worries about their children (Chen, Cohn and Orsmond 2018). As you may have experienced, uncertainty about the future, lack of guidance about how to help your youth, disruption in your youth’s vocational or educational progress after high school, or sibling symptoms of emotional or behavioral problems can all be worrisome (Taylor and DaWalt 2017; Walton 2016).
Beyond the studies, however, are the stories of individual families like yours. There are families like Robert’s where parents argue about how to help the autistic youth. There are single-parent families like my own who are desperate for a break after years of doing two jobs: a paid job to earn a living, and an unpaid one supporting and nurturing the development of a child with special needs. There are other families where parents are caregivers to their own aging parents at the very time when their autistic youth needs them the most.
Long-term concerns may also be looming in the back of your mind. The one I have heard most in the support group I attend is “What will happen to him/her when I die?” When our children reach adulthood, our own mortality comes into stark focus but this worry is magnified in the case of autistic youth. You may wonder, “Will my daughter be one of the lucky few who manages to be steadily employed and live independently, or will long-term financial and residential support be needed?” or “How will my son cope without me, when he considers me his best friend?” or “Is it fair to ask a sibling to help look after my child down the road?” Part 3 of this book addresses some of these long-term considerations.
Figure 1.1 Developmental progress by age
If you experience a grief reaction as you recognize that your child may never reach the level of independence you had hoped for, you are not alone. Many parents of transition-aged youth on the autism spectrum have this experience. During childhood and adolescence, well-meaning professionals sometimes reassure us with the statement “Their development may still catch up.” Unfortunately, in most cases “developmental catch-up” is a myth. Figure 1.1 compares developmental progress in an area affected by autism (say, social skills) in an autistic child versus a neurotypical child. As a result of good supports, the autistic child is steadily improving in this area, but the rate of improvement is slower than average. As you can see, when a child develops more slowly than the average in a particular area, the gap between the child and same-aged peers widens over time. It does not decrease. By the end of high school, the fact that the child will never catch up to peers in some areas of development becomes painfully obvious.
There are occasional exceptions. For example, some highly intelligent youth are laser-focused on succeeding in a particular field, and therefore put great effort into remediating their autism-related deficits in independence, social skills, and so on. Unfortunately, they are uncommon.
As your autistic youth becomes an adult, you may have to face the fact that certain disabilities will persist, and this realization can be hard. It is even harder when you blame yourself or others, so try to avoid looking back and instead focus on what is still possible. Pay attention to your youth’s abilities, not just the disabilities. This is helpful not only for your