Perspective and Potential in Autism

To gain greater understanding of their children with autism, parents may seek the first-hand accounts from high functioning adults with autism. In “What It’s Like Growing Up Autistic,” published online in Folks last week on September 12^th, Alyssa Gonzales shares her experiences and explains her perspectives. [To read this article, please click here.] While she offers clear explanations for common behaviors in autism, she also candidly and rather harshly condemns her parents.

First, she explains why she has trouble with eye contact. Although she admits, “I have never liked making eye contact,” she notes that she was never aware of her lack of eye contact until high school. Once others commented on her lack of eye contact, she practiced during classes by looking across the room at people, only to find them angry or uncomfortable that she was staring at them. She further explains that making eye contact with people up close is “overwhelming” and “intense,” creating “alarm and discomfort.” Consequently, she has learned to look at people’s faces without looking at their eyes. However, she finds eyes appealing, even if eye contact proves difficult, admitting, “I love eyes. But they are too much for me to deal with when they are looking back.”

Another problem for her is dealing with loud noises. To cope with sounds that overwhelm her, she only goes to outdoor concerts and sits far from the stage, plugs her ears when she hears loud noises, and wears earplugs at times. She notes, “My family has always felt the need to push me to accept louder environments…And to a certain extent, it worked.” To illustrate, she explains, “Practicing being in loud rooms gave me the fortitude to survive some parties long enough to collect some cherished memories.” However, she admits that she did not enjoy dealing with the noise associated with these special times.

To cope with anxiety, she finds touch soothing, such as holding a smooth rock or wringing her hands or holding onto a banister. In addition, she likes to lean on furniture when she talks to other people. By touching objects, she feels “grounded” and “connected to this space, instead of wafting through it like a ghostly breeze.”

After explaining aspects of life that prove difficult, the author describes the things she loves best—her fixations and passions. For example, she enjoyed reading dictionaries and encyclopedias, memorizing scientific information, and making lists of the countries of the world. She notes, “I brim with enthusiasm I don’t know how to share.” However, she has learned to contain her enthusiasm, which she believes people use as “a weapon” against her. Specifically, she says that people may see her as “weird” or “a mutant,” even blaming her for recommending a movie they don’t like. By keeping these passions to herself, people now perceive her as “withdrawn.”

In her attempts to adapt to the world, the author seems to harbor bitterness toward those who apparently tried to help her cope, namely her family, friends, and teachers. She blames them for trying to change her and states that “they should have known I could never shed or suppress or unlearn” the aspects that make her untypical. Furthermore, she asserts, “If only they’d just let me go ahead and be autistic instead of pressing me into this world’s joyless mold, perhaps I would have been happier. How could they not tell?” Continuing her criticism of those who apparently ruined her life, she proclaims, “If only I had been supported in who I was, just imagine who I would have been allowed to become.”

While I appreciate Alyssa Gonzales’ willingness to share her experiences with autism candidly, I think she may have perceived intentions to help as intrusions on her life. Certainly, life with autism is difficult, but raising a child with autism is also difficult. In trying to help a child with autism cope in a world that overwhelms at times, parents may make mistakes, but I would venture those mistakes are made out of love. Knowing that others may not view certain autistic behaviors as acceptable, parents and teachers may teach the child alternative ways to cope with anxiety and to interact with others positively, hoping to prevent them from being victims of bullying, which is all too common.

Most of all, I’m sorry that Alyssa Gonzales sees the world as “joyless” and believes that her potential and happiness were quashed by the actions of those around her. Perhaps, she could instead look at what she has been able to accomplish, such as her ability to express herself clearly through writing, and find joy and a sense of pride in her achievements. As we continue to work with Alex on his social skills, we know that he needs to learn how to speak and act in such a way that others find him likeable. As we see him interact with others, we realize that he is developing a charm that engages people, and we are thankful for this progress. Certainly, we hope that he will not look back resentfully on our heartfelt efforts to make his life better. However, with the joyous approach Alex takes to life, I believe he understands that our unconditional love for him motivates our drive to help him reach his full potential as he overcomes the obstacles autism has presented.

“…for everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.” I John 5:4

Keys to Success

 

Yesterday I read an interesting article that made me think about the most valuable skills we can teach children, whether they have autism or not. This article was linked on the Indiana Resource Center for Autism’s Facebook page and was published on their website, which has a wealth of resources and information regarding autism. [To read this article on their website, please click here.] Written by graduate student Anna Merrill, “Tools for Successful Transition: Self-Determination, Resilience, and Grit” identifies three key traits that will help adolescents, particularly those with autism, develop into successful adults. She notes that self-determination, resilience, and grit are important for positive outcomes, such as employment, independence, and a better life for adults.

The first of these traits, self-determination, focuses upon pursuing and obtaining goals, which are needed for a sense of well-being. Ms. Merrill lists several strategies to develop self-determination in adolescents, such as teaching goal-setting and problem-solving skills, encouraging decision making, and promoting self-awareness and self-advocacy. In addition, she provides practical suggestions, including participation in planning meetings, developing listening and effective communication skills, learning to deal with stress and frustration, and self-evaluation of interests, strengths, and weaknesses.

I found these strategies interesting because Alex’s support team––his case manager, behavioral therapist, music therapist, and respite staff, along with Ed and me––all use these approaches to help him make decisions and become more independent. This Wednesday, we will have a quarterly meeting with his team to discuss his progress and needs. As always, Alex is expected to be an active participant because he will need to answer questions, even though verbalizing his thoughts and feelings isn’t always easy for him. Nonetheless, we all know that his input is vital to developing his skills and planning for his future.

The second trait detailed in the article is resilience, the ability to cope despite adversity and the refusal to give up. To deal with challenges, Ms. Merrill notes three important elements crucial to resilience. Specifically, developing positive personal traits, such as optimism and self-esteem, is vital to resilience. In addition, family relationships, including a nurturing environment and a stable home life, help develop resiliency. Along with family support, community support, such as connections with extended family and involvement in community activities, also foster resilience. Essentially, a good attitude and the support of caring people help a person learn to deal with challenges effectively.

Despite the obstacles autism has presented, Alex has learned to be quite resilient. He maintains a positive attitude most of the time and rarely complains about how difficult some tasks are for him, due to his fine motor and communication limitations. In addition to our love and support, he now has a team who provides support, and because his behavior has improved, he has more opportunities to interact with extended family and to engage in community activities, such as music and sports, which he thoroughly enjoys.

The final quality needed for success, according to the article, is grit, which is related to resilience in that grit is the perseverance despite obstacles, the tenacity to pursue goals, no matter what. To develop grit, Ms. Merrill recommends encouraging a growth mindset that emphasizes the value of the process and not just focusing on the outcome. Grit requires persistence, a desire to learn, and valuing challenges, effort, and criticism.

The importance of grit makes sense to me because Alex is one of the most tenacious people I’ve ever known. (I’m pretty tenacious myself, so he may have inherited or imitated that quality from me!) I’m certain that one of the main reasons he has made so much progress over the years is that he never gives up and keeps on trying, despite the obstacles autism has created. For example, if he tries to tell us something, and we don’t understand what he’s saying, he will keep giving us clues until we figure out what he wants to communicate. To watch him eat is often a lesson in grit because his fine motor skills can make eating difficult. Nonetheless, he never gives up poking or scooping with his fork until he is able to get food in his mouth, which is the reward for his efforts.

After detailing the three qualities needed for success, this article also discusses what may hinder the development of self-determination, resilience, and grit. The author notes that parents may prevent their special needs children from developing these important traits with the best of intentions. Specifically, parents may want to protect their children or may not want them to fail, so their children do not develop these qualities necessary for success in life. She recommends that parents focus more on long-term goals than daily goals and push out of their comfort zones, which is in the best interest of their children so that they may successfully become independent adults.

With the best of intentions, I have been a full-fledged helicopter parent to Alex, I admit. Because he could not speak well, I have been too quick to speak for him. Because fine motor skills made basic tasks difficult for him, I have been his extra pair of hands. Because I feared for his safety, especially since he is naively trusting and doesn’t always sense danger, I have held onto him tightly. And for less noble reasons, sometimes because I was in a hurry, I did things for him because it was faster and easier than waiting for him to do it himself. Although I have enabled him in many ways, I know that he must learn to be independent because I won’t always be around to fix him a snack, or zip his jacket, or remind him to go to the bathroom before he leaves the house.

Because Alex has learned good coping skills and is less likely to become overwhelmed, we have been encouraging him to make his own decisions. At first this was difficult for him because he was used to us telling him what to do. After teaching him how to weigh his options, he is becoming quite adept at making reasonable choices, and he seems to feel proud that he can decide for himself. In addition, I am learning to walk away and let him do things for himself instead of watching him struggle and then taking over for him. For example, he may have to take a dozen attempts to hang up his jacket, but I can’t grab it out of his hands, or he’ll never learn to do it on his own. With more practice, he’s getting much better at hanging up his coat in fewer tries, but more importantly, he feels a sense of pride for doing this task by himself.

This sense of independence has carried over in other aspects, as well. Recently, Alex has begun consistently bringing his dishes and forks to the sink after he’s done eating without being reminded to do so. In addition, he has become more involved in planning his schedule, making sure that we know the dates and times of basketball games or television shows he doesn’t want to miss. Also, he has shown more autonomy in his health, letting us know when it’s time to take his pills and wanting to learn all the names of them, identifying them by color and shape. Rather than relying upon us for every aspect of his carefully planned schedule, Alex is becoming more self-reliant, and he likes being a more active participant. With these small steps, he works toward our ultimate goal––independence, and we know that God will be with Alex every step of the way.

“So we keep on praying for you, asking our God to enable you to live a life worthy of His call. May He give you the power to accomplish all the good things your faith prompts you to do.”  2 Thessalonians 1:11