Launching Your Autistic Youth to Successful Adulthood. Katharina Manassis
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our youth’s independence? Who can help us address these challenges?
This chapter answers these questions to help you become more effective in promoting your autistic youth’s independence. We discuss: parent–child interactions which can promote or inadvertently undermine independence, specific independent behaviors needing attention, practical challenges to teaching these behaviors, finding and using case managers to help, and when/when not to advocate on your young person’s behalf. Decisions regarding independent living are examined in Chapter 10. To begin, let’s look at why promoting independence in transition-aged autistic youth can be challenging.
Why is independence challenging and how can you help?
Fear is the main reason independence is challenging at this age. We all rely on predictable routines to ease anxiety, and autistic youth rely on them even more than most people. When high school ends, so do those predictable routines, making this a very anxiety-provoking time. When you expect autistic youth to develop new, independent behaviors at a time when they are already anxious about life changes beyond their control, it may be too much to ask.
For this reason, you should start promoting independence during the high school years and continue to do so in the years beyond. By doing this, you avoid adding another “new thing” (i.e. the expectation of greater independence) to the challenges associated with leaving high school. You can help reduce anxiety further by providing what is termed a “secure base” for your youth at home (Waters, Ruiz and Roisman 2017). Although this idea has been more thoroughly studied in younger children, it is relevant to teens and young adults as well. A secure base doesn’t mean allowing youth to cocoon in their rooms all day. Instead, you encourage them to venture out, control your own anxieties about what they might encounter, and provide an emotionally secure place for their return. You acknowledge their efforts, praising every small step forward. You show empathy when they encounter obstacles. You avoid conflict and criticism as much as possible.
In addition, review some of the predictors of employment and education listed in Chapter 1, as these are associated with independence too. Recall the main themes of early preparation (e.g. high school courses geared towards post-secondary goals; part-time or volunteer work in high school), building daily living skills (e.g. self-care, chores), and having positive expectations. See if any of these can be developed further in your circumstances. We return to daily living skills later in this chapter.
There is also some evidence that early childhood intelligence is predictive of independence over time (Billstedt, Gillberg and Gillberg 2007; Magiati, Tay and Howlin 2014), though this is a factor you cannot change. However, you can set goals for independence which are consistent with your youth’s abilities. For example, a youth with an intellectual disability might work on skills related to basic self-care; a youth in the middle of the spectrum on managing a vocational school or employment program with adult assistance; a high-functioning youth on organizational and social skills needed for college.
In summary, early preparation, making home a supportive and encouraging “secure base,” building daily living skills, having positive expectations, and setting goals consistent with youth abilities provide a good start to promoting independence in transition-aged autistic youth.
What can go wrong?
Despite the best intentions, you can inadvertently undermine your youth’s development of independence. This is not deliberate. Rather, you may have habitual ways of relating to your son or daughter which worked when they were little but are no longer helpful. I will illustrate these common “relationship habits” with some examples from my practice. See if you can figure out what went wrong in each case, and how parents could have promoted their youth’s independence more effectively. Then, take a moment to reflect on whether or not any of these relationship habits exist in your family.
DOING TOO MUCH: JOEY
Joey had an intellectual disability as well as autism, and had always attended a special school. His parents’ goal was to have him learn basic self-care so that he would have a greater number of assisted living options as an adult. An occupational therapist taught Joey how to dress himself, brush his teeth, shave, and do other basic hygiene. Despite her help, he took a couple of hours to finish his morning self-care routines, which included multiple reminders from his parents. When the occupational therapist followed up with Joey and his family a few months after finishing her work, she found that his parents were still doing almost all of Joey’s self-care for him. His parents explained, “It’s just so much faster when we do it, and he gets so frustrated when we don’t.”
What went wrong in this case? As you’ve probably guessed, Joey’s parents are in the habit of doing things for their son rather than allowing him to learn from experience. Their reasons for this behavior are quite understandable. In the long term, however, Joey needs to tolerate some frustration if he is to learn the morning self-care routines as taught by his occupational therapist. His parents’ job is to stand back and let this happen, even if they empathize with Joey’s pain. They also need to be patient with him, allocating extra time each morning so he can practice his routines until he can do them quickly.
Allowing him to struggle as he learns to take care of himself will eventually be helpful to both Joey and his parents. As he struggles and occasionally succeeds, Joey will become more confident about his ability to look after himself. This confidence may increase his level of independence in other aspects of life beyond basic self-care. As Joey becomes more independent with self-care, his parents’ lives will become less restricted. For example, there may no longer be a need for one parent to stay home and start work late in order to supervise Joey’s routines. Eventually, Joey’s self-care may improve to the point that they can leave him on his own, or with minimal supervision, for a day or two as they enjoy a weekend out of town. Family life may improve significantly as he makes further progress towards independence.
DOING TOO LITTLE: TIM
Tim’s parents assumed his independence would develop naturally as long as they didn’t interfere too much. When he started high school, he seemed to enjoy his special education class so they didn’t ask whether or not it was possible to have him integrated with neurotypical students for some courses. They did not realize until his second year that Tim was not enrolled in any courses which would earn credit towards a diploma. When Tim expressed little interest in socializing, his parents accepted this as “just his nature.” When he was invited to birthday parties by classmates, his parents dropped him off and assumed that Tim would figure out what sort of behavior was expected there. They didn’t feel it necessary to warn the hosting family that Tim tended to overeat until he threw up when nobody limited this behavior. Invitations to parties dwindled.
Tim received a certificate of completion at the end of high school, as he had passed some credit-bearing courses but not enough for a diploma. When his parents asked what he wanted to do next, Tim replied, “Hang out at the mall.” He soon became a fixture at the local mall, spending several hours a day walking around stores and then catching an early evening movie before heading home. For a change of pace, Tim’s stepfather took him to work once a week where he helped count inventory and sort supplies. He seemed content, so no further steps were taken to promote Tim’s independence.
Tim’s parents are very accepting of his limitations, which is not always a bad thing. However, they are so accepting that they neither challenge him to learn nor challenge his school to help him reach his potential. Who knows what Tim could have accomplished if his parents’ expectations had been higher? His ability to stay out of trouble at the mall, talk to theatre personnel at the movies, and help out at his stepfather’s work suggest that Tim is not as low functioning as some autistic youth. However, as his parents did not actively pursue ways of optimizing his academic and social development in adolescence, Tim followed the path of least resistance: he ended up with a minimally productive lifestyle, limited social contact, and no close friends. In the short term, Tim seems comfortable. In the long term, Tim’s isolation and social naiveté place him at risk