social skills and gave him the opportunity to make new friends.
Importantly, the goals set were Robert’s goals rather than those of his parents. His parents were encouraged to offer help, but not to nag Robert about his activities. If he seemed to be doing poorly for a few weeks, they were encouraged to set up a meeting between Robert and his mentor. As Robert started spending time outside the house again, his parents were less preoccupied with his problems and the spousal relationship improved. Robert’s brother was no longer envious of him, and stopped skipping school. Family harmony returned.
Eventually, Robert admitted to his psychiatrist that gyms and libraries can be a bit boring, and expressed an interest in working at an electronics store. With his parents’ advocacy, Robert got a volunteer position at the store. After six months of volunteer work, it became a part-time job. Robert also started going to the movies about once a month with one of his co-workers. His family doctor was surprised at how contented and healthy he looked a year after completing high school, despite not being on any medication.
Consistent with the evidence reviewed earlier in the chapter, Robert improved as his days became more structured and additional supportive adults became involved (the mentor, the electronics store owner, the psychiatrist). Given the ongoing coaching and advice she provided to Robert and his parents, the psychiatrist also resembled a case manager. Progress was slow, proceeding at a rate comfortable for Robert. Adapting the transition to Robert’s needs, interests, and pace was crucial, as was his family’s ability to work with the psychiatrist, reduce conflict, and tolerate the slow rate of change. All of these factors worked together to build momentum towards a positive transition to adult life.
Even though Robert showed great improvement, this is not the end of his transitional story. It is still not clear, for example, if he will ever be able to work full-time or work in a less supportive environment, if his circle of friends will ever expand, or how much independence from his family he will achieve. Only about 20 percent of autistic individuals become fully independent (Poon and Sidhu 2017). Robert’s positive momentum may continue, or a change in circumstances may disrupt it. The electronics store could go out of business, the mentor could move away, the psychiatrist could retire, or the family could face a new challenge. Any of these events could derail Robert’s progress. Robert’s parents will have to think carefully about how to ensure he has a larger “safety net” of supports in the long run, and greater resilience to cope with future circumstances. Part 3 of this book is dedicated to these long-term concerns.
Final, hopeful thoughts
Unfortunately, there is no “quick fix” to help youth on the autism spectrum achieve their full potential in adulthood. If there were, this book would be unnecessary. It takes time and effort (yours, your child’s, and other concerned adults’) to reach a satisfactory outcome. The next chapter describes what might constitute “satisfactory” in each case. In my own journey with my son, I was getting quite discouraged until I remembered something: when he started school, it took five years to find a program where he felt accepted and was actually able to learn. Why should the more complex transition from school to adulthood be faster?
To maintain some hope and equanimity during this challenging time, a few further thoughts may be helpful. First, some things are beyond your control. In particular, you may not be able to control the achievement of milestones which require commitment on the part of other people. With some effort, you can probably find consultants or short-term ASD-focused programs targeting employment skills, adjustment to college, social skills, and so on. Unfortunately, a brief consultation or a few months in a program will not help your youth weather the storms of adult life, and is rarely a long-term solution. Parents need partners who can follow the young adult’s progress long term so that gains are maintained or increased over time. Case managers, doctors, therapists, employers, employment counselors, educators, mentors, social workers, close friends (yours and your youth’s), and family can all be important partners. However, the commitment required to be such a partner is rare, and you cannot force it. Chapter 8 discusses how to connect with such helpful supports.
Second, set high expectations but be prepared for disappointment. If you don’t aim high, there will always be doubt about whether or not your youth could have achieved more. If you do, at least you know you and your youth gave it your best effort. 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
