Life Is Not How You Mapped It Out To Be, You Go With It.

  • Linda Kim-Stewart, MA, BCBA

     

    3 Families Share the Joys and Challenges of Raising Their ASD Teens

     

    Vincenzo, 14, Jonathan, l5, and Michael, 18 are, in many ways, like any typical teenagers. Their journeys through puberty, teenage angst, and self-exploration will undoubtedly shape them as adults. Their parents (respectively), Nichole, James, and Crystal, share their experiences raising these teenage boys—all three on the autism spectrum. These parents candidly discuss some of the challenges – and the strategies they employ to meet those challenges—of ushering these boys into adulthood. Raising these teens requires maximizing resources, proactive planning and coordination, and making the most of learning opportunities.

     

    Consistency and Synchronization

     

    Many parents have busy schedules and may feel they have limited resources to provide the best social learning opportunities for their teenagers. However, with existing resources, there are ways to optimize teachable moments. James says that educational goals need to be synchronized across curricular settings. Remaining connected with those involved with your child’s education and training ensures consistency.

    Nichole advises families to “read and get pieces of successful stories,” simply by using a search engine. She has found prolific information for families who want to sharpen their teaching skills. Nichole suggests maximizing resources you already have. For example, Nichole has enrolled Vincenzo in Tae Kwon Do and his instructor, makes an extra effort to teach eye contact during lessons, imparting ideas such as, “It’s okay to cry if you are a boy.”

    Vincenzo and Jonathan are both enrolled in a San Mateo social group, where role-playing and video analysis augment teamwork, self-management, and theory of mind.

    A parent’s social life can positively impact the social lives of their kids. Crystal says that extra coordination is key when planning trips. In her recent trip to Canada, she made sure that her group of friends–and their kids–were both present, presenting social opportunities for Michael. Crystal encourages parents to economize their energy and find ways to “relax and make themselves happy first.” She tells herself, “I can do more,” but she knows she needs to take time for herself as well, and avoids over-scheduling her teenager’s day. She realizes that numerous goals can be met within a single scheduled activity.

    James and his family also have a close group of friends from their local church, who also have children with autism. The benefit of this association is that James “does not have to justify or explain if behavioral issues occur,” no doubt saving explanation time and stress.

     

    “It’s the issue you have, not you.”

     

    Seemingly mundane academic tasks are often difficult for Jonathan, Michael, and Vincenzo. Homework and projects may take twice the time and effort to complete. Nichole says, “If Vincenzo gets stuck on a math problem, he won’t skip it,” prolonging homework time.

    Wanting to give his sons equal treatment, James has never specifically told Jonathan that he has autism. Recently though, Jonathan has begun to notice  that “he has a learning difference.” Because Jonathan’s symptoms are not severe, he sees himself as “fine, but views kids with severe behavior issues to be autistic,” explains James. Seeing this, James and his wife take an “impersonal” approach and let Jonathan know, “It’s the issue you have, not you.” Their intent is to help Jonathan, “identify the issues and problem-solve” rather than to blame himself. They prefer to frame the issue of Jonathan’s interrupting as a “habit,” and encourage him to have “better conversations and keep people interested,” by being an active listener.

    Michael too acknowledges that he is “different,” but Crystal has never labeled his difficulties as ‘autism’. There are occasions when Michael does not feel as smart as his brother, Lucas. Lucas has become a role model for him, and includes him in with his group of friends, which enhances Michael’s social opportunities.

    Nichole sees it as her responsibility to arm her sons with information. She relates, “Vincenzo always knew he was autistic,” and she ensured that he understood that “there was nothing wrong with it.” Nichole has taught Vincenzo’s brother, Gino to never “be embarrassed about having a brother with autism.” Early on, Nichole instilled confidence in both brothers as a life skill. Gino once even told a bully, “Don’t talk about my brother, he’s smart and not a loser.” Once in the library, a peer whispered to Vincenzo, “I know your secret…I know you are autistic.” Vincenzo told him, “I don’t care, I’m smarter than you.” Nichole’s coaching and confidence-building has prepared Vincenzo to be assertive. Although there have been rejections by potential friends, Nichole has always told Vincenzo, “You only need one true friend.”

    She is also teaching Vincenzo about sex, STDs, and the use of condoms as interest in girls surfaces. Along with that, Nichole discusses the nature of relationships: the heartbreaks and disappointments, and of course, the happiness. After the last school dance, Nichole’s husband informed her that Vincenzo “danced with a girl.” When she asked him about it, he replied, “Mom, my life is not your reality TV show.” She could not help but laugh at the joke and his reference to her leisure activity.

    However, Nichole tearfully explains the frustration she encounters when getting Vincenzo to begin his homework or reminding him to brush his teeth or put on his deodorant. His poor time management skills have canceled movie nights. If something unexpected happens, Vincenzo often can’t maintain his composure and will have a “melt down.” This can stress a parent in the heat of the moment. Nichole copes by walking away and reminds herself that it is “Vincenzo’s autism, not him.” Her philosophy is that, “Life is not how you mapped it out to be, you go with it.”

    Crystal’s son Michael struggles with English and history due to his reading comprehension issues. However, an upside to Michael’s extended research time when writing high school papers is that “he has developed techniques in writing reports,” that he will use as he enters San Jose State University in the fall. However, she is still concerned that “he puts a lot of pressure on himself, as it is part of his character to be good and not make mistakes.”

    Nichole’s son Vincenzo is entering high school next fall and she explains that in his AP classes, “the work will not be modified,” meaning he will have to keep pace with his classmates.

    Jonathan is also entering high school next fall, and James has been preparing him for the new social setting. He explains to Jonathan that “he needs to have better conversations and keep people interested,” being an active listener and not interrupting people. Jonathan is aware that his behaviors may be seen as rude if “he just continues to talk and not listen.”

     

    Pleasant Surprises

     

    Individuals with autism are often characterized as aloof and lacking in emotion. This is quite the opposite for Michael, who will often ask his mother if she’s feeling okay and tries to comfort her when she appears sad. Although Vincenzo was sad when his uncle passed away, he told Nichole, “It’s not a time for sadness…It’s time to reflect… It’s okay mom, he’s in a better place.”

    James is amazed at how his son “will bring back memories,” surprising his family with crystal clear details they have forgotten. Jonathan has learned that “humor is a good way to make people laugh” says James. He has perfectly memorized Bill Cosby’s comedy routines and will perform them to make others laugh.

    These families continue to utilize token systems similar to those in early intervention to “give enough incentives to remain on task,” explains James. The boys understand the concepts of their reinforcement contingencies and willingly trade tokens in for preferred activities like computer or TV time. And, like other tech savvy teenagers, Michael, Vincenzo, and Jonathan spend a lot of time on the computer. Because building friendships is a more arduous journey for him, Crystal believes that “Facebook and e-mail make it easier for [Michael] to reach out.” Although Nichole relates that Vincenzo “gets stuck in the vortex of chats,” the benefits of socializing make it a net plus. James says that the “Internet in general has been a window to the world” for Jonathan. Jonathan devours facts about Asian cultures and news of the world thanks to social media.

    Jonathan and Vincenzo still do not have meaningful friendships. Although Vincenzo will chime in on conversations at school, and Jonathan has his brother’s friends, they have yet to experience true friendship with a peer. However, Michael has had more time to develop peer relationships and is in the process of applying to college dorms with four of his closest friends. Jonathan and Vincenzo still have 4 years of high school in which to learn and connect with others, and still more years in college to prepare them for their professional adult lives. Their parents do not see autism as a barrier to a promising future for their teenagers. They see their children as having potential as unlimited as anyone else.

     

                Linda Kim-Stewart is a Board Certified Behavior Analyst and the Regional Manager of Stepping Stones, in Northern California. She has been working in the field of Applied Behavior Analysis since 1999 and has provided consultation for school districts, non-public agencies, and regional centers. She is committed to developing effective treatment plans for individuals diagnosed with autism and related disorders.

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