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.
Promoting independence successfully
As the examples illustrate, promoting independence requires avoiding blame and finding the right balance between involvement/advocacy and allowing your youth to learn from experience.
In addition, a problem-solving approach may be helpful. Problem-solving involves sitting down with your youth and facing a given challenge by generating as many solutions as possible together. After this brainstorming exercise, help them evaluate the pros and cons of each alternative, and then encourage what seems like the best alternative. Follow up afterwards to see how things went and problem-solve further if needed. This approach is described in more detail in my book Problem Solving in Child and Adolescent Psychotherapy: A Skills-Based, Collaborative Approach (Manassis 2012). The benefit of this approach is that it fosters resilience and independence (Cowen et al. 1997) by having youth think for themselves while you help them organize their thinking and plan ahead. Gradually, they learn to follow the problem-solving steps independently. Problem-solving may also benefit your own mental health, as parents of autistic youth who cope by focusing on solving problems report less stress and a higher quality of life than those using other strategies (Vernhet et al. 2019). Here is an example of combining a balanced approach, which includes both parents’ involvement and learning from experience, with problem-solving