Launching Your Autistic Youth to Successful Adulthood. Katharina Manassis
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Beyond parent–child differences, Table 2.1 summarizes the aspects of adult life which are prioritized by different groups of people around the young adult with ASD. Elias, Muskett and White (2019) did focus groups with secondary and post-secondary educators and asked them to identify the main areas of need for youth on the autism spectrum. They prioritized overall competence, autonomy/independence, and interpersonal relationships. By contrast, researchers studying parents found they were most focused on their children’s educational and career goals (Taylor and DaWalt 2017). Parents whose children had disruptions in their educational or career paths after high school were more depressed than those whose children did not experience these difficulties. Not surprisingly, multiple studies found that physicians were most focused on physical and mental health in autistic young people (Wilson and Peterson 2018).
It is easy to see how these differences could result in frustration if unrecognized. For instance, you may be dismayed by educators’ emphasis on social connections and independence, as you see the educators’ main job as preparing your son or daughter for the academic aspects of post-secondary education. We all want our children to “aim high” when it comes to long-term goals, and education is a vital part of that success in the twenty-first century. However, young people with ASD who struggle in college report social isolation, rather than academic difficulty, as the biggest problem (Jackson et al. 2018), so the educators might have a point. Educators and parents must listen to each other and, most importantly, to the autistic youth themselves regarding the best ways of supporting success. Open discussion of goals and areas of difficulty among parents, educators, and young people themselves can clearly be helpful. This is true for all youth starting adulthood, but is even more important with autistic youth where the issues are so much more complex than the average.
Young ASD adults vary a great deal in their preferences and priorities. Some, like Henry, value the social side of life while others are much more interested in educational or career success, independence, or good health. Like Henry, they may value an aspect of life that has been difficult for them in the past. Recall that in his case, shyness made socializing difficult. Someone with a history of physical or mental health problems may value progress or stability in this area; someone held back by an inability to navigate around town independently may want to work on that area. Still others prefer to build on their strengths. A highly intelligent young woman with ASD, for example, may enroll in a challenging university program; a young man who did a cooperative education placement in a pet store may subsequently seek employment there.
Young adults with ASD usually value the “tried and true,” but as this does not always lead to success, try to expand their horizons as well. Find out what your young adult values. Listen to their comments about what high school courses are “great,” and what characters in stories or shows they admire. Ask about the fantasy world where they live when you are not around, and what makes it exciting. Ask other adults who interact with your young adult (e.g. a favorite teacher, a youth group leader at church) what topics cause them to participate in the group. These are the areas where they will be most motivated to try something new!
As shown in the table, everyone seems to agree that family, social, and community support is needed, but the level of support which is ideal varies from one young person to another. For example, your 18-year-old ASD adult may have memorized the subway or bus system and navigate it without difficulty, an ASD classmate may be able to use public transit independently after several “practice runs” with a parent to the same destination, and still another autistic youth may be anxious about even attempting to travel more than a few blocks from home. All are the same age and, officially, have the same diagnosis but the level of support they need in order to travel is vastly different.
The optimal type of support varies too. For instance, your young adult may not want you to accompany her to an event, but will go to activities with a teacher or other adult. For others, the reverse is true. Similarly, activities involving groups of autistic youth are enjoyed by some and rejected by others (discussed further in Chapter 8). Buddies, whether neurotypical or affected by ASD, may be helpful to smooth the transition to something new for the latter group. Overall, most autistic youth will respond to some form of support to broaden their horizons so don’t give up looking for one that works.
Sources of motivation vary from person to person too. After years of working with your son or daughter, you probably have a pretty good idea of what motivates them to try something new. Still, it may be worth taking a moment to review what has worked in the past before discussing goals.
Moreover, because of their tendency toward strong, idiosyncratic interests, young adults on the autism spectrum are not always motivated by financial gain to the same extent that other young adults may be. For example, when looking for a job, they may value time off to pursue their favorite game more than a higher rate of pay. Others may value the money as a means to obtain something consistent with their interests. For instance, I have seen several young people who saved up diligently towards getting a pet. Youth on the spectrum may also have a strong sense of right and wrong, which sometimes motivates spending money on worthy causes. Still others may continue to value child-like rewards such as candy or other treats.
Regardless of what drives them, young people are more likely to pursue new goals when they can obtain their desired item or activity more consistently as a result of doing this. Sometimes you may need to provide the rewards but, more often at this age, it is a matter of gently pointing out what lies in store once they overcome the fear of doing something new, or of setting up routines which facilitate the new activity. We will revisit this issue in Chapter 3 on promoting independence.
Where to start with goal-setting
One universal truth about goal-setting is this: the earlier you start, the better! Even if goals have to be modified over time, discussing goals and long-term plans throughout the high school years sets the expectation that the young person will continue to grow and develop beyond graduation. That expectation of continued growth and change is invaluable. Over forty years of educational research have shown that teacher expectations of students early in the school year relate to how well those students do academically by the end of the school year. Parental expectations have recently been found to affect child outcomes too, especially when the child appears vulnerable in some way (Briley et al. 2014). In short, setting a positive expectation regarding your child’s further development increases the chances it will actually happen.
Starting early also allows time to try out different options before having to pursue them seriously. For instance, if your child is considering working in a library, she could do a cooperative education placement in this setting during high school to test out this career choice. If he is fascinated with reptiles, he could volunteer at a zoo to learn about work related to this interest. Some high school courses also offer practical experience related to possible long-term goals. Cooking, wood shop, landscaping, and photography courses are just some examples. This early experimentation with different types of work and work environments is particularly important in those who have developmental delays. If your child is very bright and university-bound, some career decisions can be sorted out in those post-secondary years. If your child is likely to seek work or vocational training right after high school, there