At the same time, your autistic youth will likely face limitations which can compromise goals set initially. For example, your youth may face sensory overload if asked to work in a busy or noisy environment full-time. Part-time work or work in calmer surroundings may be a necessary compromise. Similarly, concurrent medical issues such as seizures or mental health problems may interfere with achieving all that was originally envisioned. Moreover, you may not have the time, money, or energy to do all that would be ideal to help with your youth’s transition to adulthood. Achieving goals such as securing employment or developing independence skills may be costly, require a high time commitment, or both. Supporting them may not be feasible unless you are wealthy, retired, and have few other family responsibilities. Accepting limitations does not imply giving up on goals, but rather modifying goals to ones that can reasonably be pursued in your circumstances.
Lastly, avoid comparisons and focus on small steps forward. One of the reasons why Figure 1.1 looks discouraging is that one naturally compares the two trajectories shown. If you look only at the ASD line and ignore the neurotypical line, it doesn’t look nearly as grim. Good track and field coaches will tell you to “run your own race” and focus on improving upon your personal best. The same advice is helpful when it comes to encouraging youth on the autism spectrum. They will be behind others in some areas and ahead in others, but that is not nearly as important as continued progress. Periodically review with your young adult all that they are doing this year and were not yet doing last year. This exercise is encouraging for parents and youth alike. Moreover, delight in your youth’s successes even if they are small by conventional standards. Celebrate the first time a shy, socially awkward youth sets up a trip to the movies with a friend. The first time a change-phobic youth asks to do a challenging task at work or at school, do the same. Our children may “march to their own drummer,” but they still put one foot in front of the other, and that is admirable!
Armed with a good understanding of transitional problems, we can now turn to specific solutions. Chapter 2 looks at an issue common to all solutions: working with your autistic youth towards common goals.
Before high school ends
• Build up factors associated with successful transition to adulthood: emphasize preparation, independent living skills, and positive expectations.
• Maintain a healthy skepticism. Many factors associated with a successful transition to employment or post-secondary education are not necessarily causal.
• Find an experienced case manager. Case management in adolescence is the only transitional intervention supported by large-scale, longitudinal study.
• Think about how to structure your youth’s day after high school ends, and explore potential post-secondary support services.
• Remember that youth on the autism spectrum with average or above average intelligence do not necessarily have an easy time with the transition to adulthood, and need support.
After high school ends
• Continue working with your youth’s case manager and building up protective factors.
• Ask to have your youth sign a consent form authorizing your communication with service providers.
• Stay hopeful, be patient, and recognize that some outcomes, especially those dependent on others’ commitment, are beyond your control; aim high but be prepared to compromise; avoid comparing your youth with others; focus on small steps forward.
Chapter 2
Setting Goals
Who Defines Successful Transition?
Henry’s mother: It was an awful summer…endless job applications and no results!
Henry: It was a great summer. I was busy and I found a possible girlfriend!
Whose perspective is accurate, Henry’s or his mother’s? You probably already know the answer: both. Throughout your child’s life, you may have wrestled with differences over how to spend time, what goals to aim for, and what constitutes a good, productive day—or summer, as for Henry. Now that your child is nearing adulthood, those differences will factor into many important decisions about the future. Your son, like Henry, might be comfortable maintaining his usual routines and developing his social life, while you want him to prioritize working towards vocational success in the long term. Your daughter, hoping to become a surgeon, might not want to discuss anything except how happy she’ll be when she reaches her goal. Meanwhile, you might want her to demonstrate some adult life skills (e.g. learning to manage money or succeeding at a part-time job) before she considers applying to medical school.
You and your youth may define success in the transition to adulthood differently. In the example, Henry’s mother felt that she and her 20-year-old son had failed at the job search that she had worked hard to prepare him for, because they found he simply couldn’t compete with his non-autistic peers in job interviews, where he rarely looked people in the eye and mumbled in response to questions. Henry, on the other hand, had enjoyed attending an employment skills program for autistic youth over the summer. Not only did the regularly scheduled classes suit his love of routine, but he had met a girl who shared his interest in superheroes, and they had attended two superhero movies together over the summer. The fact that he had overcome his shyness to go on his first dates made Henry feel he’d had a great summer and made a great start on his path toward adulthood.
You might also need to consider other perspectives on the transition to adulthood, such as the opinions of professionals who are available to help your family along this path. You will struggle with whether those professionals are overestimating or underestimating your child’s abilities. Sometimes they know more than you do. For example, a trained psychologist may have a better idea of your child’s cognitive abilities than you do. Other times, they are “lumping” your child together with a handful of other autistic individuals they have seen, and may know little about your son’s or daughter’s specific abilities. In this case, their assessment of their potential may be quite inaccurate.
In this chapter, we look at different perspectives on the transition to adulthood, how to find common ground among them, how to set goals with your son or daughter, and how to communicate in ways likely to encourage progress rather than prompting resistance.
Understanding different perspectives
In the example, perspectives differ because Henry values dating and regular routines while his mother values employment for her son. If these differences in values are not discussed, they could result in frustration and conflict; if they are discussed, Henry can be supported in his transition to adulthood while taking into account his preferences and values. For example, maybe he can be encouraged to persevere with seeking work so he can earn enough money to take his girlfriend to a nice restaurant or to a comic book convention.
Differences in perspectives and values related to burgeoning adulthood are not unique to Henry and his mother or even to young people with ASD. However, decisions about education, employment, relationships, and the mundane management of daily adult life are complicated for youth with ASD by the fact that they may be advanced in some areas and delayed in others. Your daughter, for example, might be very bright but lack social skills. This could mean that she has the competence to handle the tasks of a certain job but lacks the ability to communicate and collaborate with co-workers. Your son might have had girlfriends in high school, but can’t travel on his own so his ability to develop adult relationships depends on your being his chauffeur. Different discrepancies pose different challenges, and almost all can only be overcome with some support and encouragement from you.
| Table 2.1 Who prioritizes which aspects of adult life? |
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Aspect
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