Читать книгу Launching Your Autistic Youth to Successful Adulthood - Katharina Manassis - Страница 29

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 of being victimized by others, his lack of employment history leaves him dependent on social assistance, and it is very unclear where he will live once his parents pass away. Hopefully, Tim’s parents will eventually recognize the need to provide more guidance and encouragement regarding his further development.

Figure 3.1 Optimal degree of parental involvement for disabled youth

Looking at your own relationship with your autistic youth, what do you observe? Do you tend to do too much like Joey’s parents, too little like Tim’s parents, or just enough to optimize independence? Also consider how your style affects others’ perception of your youth: over-involved parents may make their youth appear immature and dependent; youth with under-involved parents may be reprimanded or punished for unchecked, socially inappropriate behaviors. If you do too much or too little, make an effort to counteract this bias. Aim for a moderate level of parental involvement which is appropriate to your youth’s degree of needs/challenges. As shown in Figure 3.1, this approach typically optimizes youth success.

BLAMING THE WORLD: SHUA

Shua lived almost full-time with her mother after her parents’ divorce. Her mother was determined to see Shua reach her full academic potential. She was in the principal’s office on Shua’s second day of high school, demanding to know why several recommendations made in her daughter’s psychoeducational assessment had not yet been implemented. When, along with three challenging courses, Shua was enrolled in a life skills course which did not earn credit towards a diploma, her mother visited the principal again. When Shua failed a short quiz worth two percent of her final grade, her mother questioned the credentials of her special education teacher and enrolled Shua in extra tutoring. Shua’s mother also informed the principal that further deficiencies in his teaching staff would be reported to the school superintendent. To avoid further conflict, the principal eventually decided to minimize formal tests when evaluating Shua, instead basing most of her grades on assignments completed at home where her mother could supervise. Shua’s mother was agreeable to this approach, though it was never quite clear how much of each assignment was actually completed by Shua and how much by her mother.

Shua was isolated at school but had several younger friends in the neighborhood who shared her interest in fashion dolls. Her mother tolerated these friends, but reminded Shua that her studies needed to be prioritized.

With her mother’s help, Shua gained admittance to a local college. Her mother requested a letter from her daughter’s psychologist supporting a long list of accommodations to ensure success there. Despite her mother’s efforts, Shua eventually announced that she was tired of “book learning,” dropped out of college, and volunteered at a local kindergarten.

Most of us worry about our children’s progress and advocate on their behalf at school, but Shua’s mother takes this approach to the extreme. Her anxiety about her daughter’s future causes her to make unreasonable demands of the school. As a result, she eventually alienates the educators who are trying to help her daughter, undermining Shua’s independence and success.

How do you avoid behaving in extreme, overly demanding ways toward other adults in your autistic youth’s life? First, remember that the extremes may be driven by your own anxiety. Many educators can help your youth succeed, but maybe not on the second day of school. Be patient, and trust in other adults’ desire and ability to help. Second, don’t take your child’s difficulties personally. When Shua failed the quiz, her mother reacted as though she had personally failed it, amplifying her reaction. To avoid this issue, try to mentally separate your experience from your child’s experience. Then, respond to your child’s difficulty with empathy. If you were a teen, what would you want your mother or father to say to you after a failure? Say that to your teen. What would you want your mother or father to do in relation to the school? Do that. Third, try to avoid placing blame. People trying to help your child may have limitations, but they rarely intend to do harm. Treat them as fellow human beings who are struggling with their jobs: help them understand what your youth needs and share what has worked in the past, but also listen to their ideas so you can work together. Finally, give your youth the benefit of the doubt. One of the reasons Shua’s mother feels the need to advocate for her daughter so persistently is that she doesn’t trust Shua to ask for help when she needs it. A few minutes spent with Shua discussing self-advocacy might relieve her mother’s anxiety, and allow Shua to cope more independently.

BLAMING THE YOUTH OR ANOTHER

FAMILY MEMBER: ROBERT

Recall Robert’s story from Chapter 1. Robert’s parents worked well with his teachers and supported his social and extracurricular activities. They also seemed to have good judgment about how much support and involvement in his life was helpful in high school. After graduation, Robert’s parents each tried to encourage greater independence. His father thought that criticizing his inactive lifestyle would encourage Robert to get out of the house and work; his mother thought that reconnecting him with a school would prod further independence. Instead, Robert was hurt and angered by his father’s criticism, causing him to withdraw to his room rather than leave the house; he considered his mother’s push to return to school a depressing step backwards, as he had recently graduated, which prompted further withdrawal. Moreover, whenever his father became critical, Robert turned to his mother for sympathy; whenever his mother encouraged vocational school, he told his father he felt she was treating him like a child. With his parents divided, nobody in the family was able to give Robert the consistent support and encouragement needed for him to develop independence until a mental health professional became involved.

Robert’s father blames him for his lack of progress without offering emotional support. This attitude is intended to encourage action, but instead pushes Robert away and makes him feel discouraged. Robert’s withdrawal and discouragement are alarming to his father, resulting in more angry, blaming interactions with Robert, which result in further withdrawal in a vicious cycle. Instead of listening to Robert’s point of view, his mother pushes Robert towards further schooling and blames his father’s critical attitude for the lack of progress. Both parents inadvertently undermine Robert’s independence, and family conflict ensues.

Clearly, cycles of blame within families cannot motivate independent behavior in youth. If you recognize such cycles in your family, make a conscious effort to change the dialogue. Before speaking, put yourself in your youth’s shoes or in the shoes of the family member you tend to blame. Listen carefully and summarize what has been said before adding your own opinion. Whenever possible, start sentences with “I feel…” rather than “You…” If interacting this way is difficult, consult a mental health professional who has experience of working with family conflict.