Sara’s mother initially sounds very helpful and focused on the task at hand. There is certainly a desire to scaffold the task by working with Sara, and narrowing down the choice of colleges may be helpful. There is only one potential difficulty: she hasn’t checked if Sara actually wants to pursue this goal! Without Sara’s agreement, there is likely to be resistance to this plan.
Melinda’s mother sounds ambivalent about post-secondary plans, but this less definitive approach is designed to invite Melinda to contribute. Options are given along with their pros and cons, suggesting that Melinda’s mother is not firmly wedded to any particular one. This approach reduces the chances of mother–daughter conflict and encourages discussion. The only option which is not on the table is “taking a year off” with no structured plan for that year. This is deliberate, as we know that a lack of structure often results in regression for youth on the autism spectrum (Scholenberg, Sameroff and Cicchetti 2004).
Health goal: going swimming twice a week
Judy’s mother helps her daughter get a pool membership, finds out the hours for swimming, arranges transportation to the pool, and verifies that Judy really enjoys swimming on a regular basis. However, a couple of weeks go by and Judy has not left the house to go to the pool. When confronted, the girl replies, “But you told me to do the vacuuming yesterday, and you got me a haircut the day before that.”
Cindy’s mother asks, “What days this week would be good for swimming?” Days are agreed upon, and she offers Cindy reminders on those days. Eventually, the activity becomes routine.
Judy’s mother has done all she can to scaffold the activity and plan it with her daughter’s participation. However, some youth with ASD have difficulty planning ahead for a week, or fitting multiple tasks into one day. Therefore, they may need help creating regular routines for activities and some parental support to ensure that routines are followed. This is exactly the approach used by Cindy’s mother.
One further potential difficulty related to ASD is excessive adherence to routines once they are established. In this case, Cindy might insist that Tuesdays and Thursdays are swimming days and refuse to do anything else on those days. This could be problematic for her mother when trying to schedule doctor’s appointments, haircuts, or other activities which might need to occur on those days. Still, it is probably best to stick to the swimming routine for several weeks before introducing occasional switches in the day of the week. By doing so, Cindy is challenged to become more flexible, but in a gradual way unlikely to overwhelm her.
Social/activity goal: going to guitar lessons
Note: the youth is now going to the fifth lesson.
George’s mother: Now remember to pack your wallet and your cellphone, and don’t forget your mittens. Be safe crossing the street! Remember to say hello to the teacher and smile. Don’t leave until she says it’s OK…oh, and call me on your cellphone if you have any problems whatsoever!
Tran’s mother: Say hello to Mrs. Franklin for me. See you later!
George’s mother would likely trigger a response of eye-rolling and groaning in her son. I know this, because I sometimes communicate this way, and so have experienced this reaction several times. When a goal is being pursued effectively, sometimes saying less is better. Parents who are overly solicitous or worried like George’s mother not only get tuned out by their youth, but also inadvertently undermine their confidence. Imagine how you would feel if you were George and had to listen to this long litany. You would probably think, “I must be pretty incompetent if I need all those reminders.”
Tran’s mother, by contrast, acknowledges her son’s ability to deal with Mrs. Franklin and implies that he will be fine, as his mother is expecting to see him later. What a great confidence-booster! This example serves as a reminder to limit discussion to the essentials. What to say may require some judgment, but once activities are being pursued successfully, less is more.
Life beyond goals
Just as youth on the autism spectrum can become obsessed with certain interests, their parents can sometimes become obsessed with setting goals to further their development. Remember that the transition to adulthood is a gradual process which spans years and transcends any particular goal or set of goals. While helping young people go through this process, we need to celebrate what they are already doing well and already enjoying. Otherwise, life becomes too focused on the destination of adult success, however we define it, and we lose sight of the journey. One young person may not have a permanent job yet, but be a valued member of his church youth group. Another may struggle with social isolation, but be an accomplished pianist. Every autistic youth has strength in at least one area. Reminding the young person of that fact is encouraging for you both, as well as providing a foundation to build upon.
Beyond the relationship with you, your youth also needs time for other relationships and activities. Time for siblings, friends, family meals or outings, personal health activities, and basic chores may not directly relate to goals, but is necessary and worthwhile in the long run. It also conveys a nice, humanistic message to your youth: “You are a valuable person with connections to other valuable people, not just a project.” This message can go a long way towards encouraging self-respect and a balanced, wholesome approach to living.
One aspect of life which is challenging for all transition-aged youth is functioning independently in the adult world. Therefore, in the next chapter we discuss ways of facilitating independence.
Before high school ends
• Explore long-term goals with high school courses, cooperative education, or volunteer placements.
• Review what has motivated your youth in the past, and link it to current goals if possible.
• Find out what your youth with ASD values. That’s where they will be most motivated to try something new!
After high school ends
• Make the initial goal something your young adult values.
• When setting goals, try to embed aspects of adult life that you value, include activities outside the house, start with small steps, and tackle one or two things at a time.
• Be prepared to provide some coaching, and perhaps involve professionals or people outside the family if your youth is willing to listen to them.
• Review past successes with your young person, as this is encouraging.
• If a goal is unrealistic, find a less ambitious goal, find a “day job” and keep the fantasy goal as a hobby, or encourage compromising on routines for the sake of the goal.
• When you doubt a goal is achievable but the young adult is motivated, give it a try! It may work out; if not, it is still a good learning experience.
Always
• Communicate with respect for the young person’s autonomy, use scaffolding rather than ordering action, ask questions to get your youth’s input, double check that your youth wants to pursue the goal, create routines to get things started, and try not to sound too worried.
• Take time to celebrate success, and to attend to people and activities which are unrelated to your youth’s goals.
Chapter 3
Promoting Independence
Who wouldn’t want their child on the autism spectrum to become as independent as possible? You have probably been striving to increase your child’s independence since birth, or at least since they received an autism diagnosis. What is different about promoting independence when someone