Thalia replaced playing with others with many acts of self-stimulation. Thalia would become fixated on her hand, with her eyes staring at it in mesmerized amazement as she rotated it back and forth. Thalia would repeatedly bring her hand back and forth to her nose. She constantly twirled around and rocked from side to side while standing. She occasionally flapped her arms. Thalia rarely played with any of her dolls. When she did, she would pick up the doll and throw it, rather than hold it and demonstrate an emotional attachment. Thalia demonstrated inconsistent eye contact. She would not look at the person who was talking to her. Thalia, at times, had a blank, almost zombie-like look on her face. She would stare at nothing in particular. Donnie and Lorena sometimes heard Thalia giggle for no reason, as if she was being tickled, while she was lying in bed before falling asleep. Thalia would also get frightened and hold or cover her ears when she heard a loud noise, such as a car horn or a fire truck siren.
Donnie’s cousin, Lisa, noticed similar alarming behaviors when seeing Thalia at a family party. Lisa was an experienced teacher at a school for children who were diagnosed with autism. Lisa was well aware of the symptomatic behaviors for autism: not age-appropriate developed communication and play skills, and a child engaging in self-stimulating behaviors. Lisa helped convince Donnie and Lorena that Thalia needed to be evaluated by a pediatric neurologist.
Thalia could not follow the doctor’s one-step instructions during the examination. The doctor asked Thalia some basic questions, but she did not respond, and she displayed inconsistent eye contact. After a lengthy examination, the doctor diagnosed Thalia as being on the autism spectrum.
It was an overwhelming day for Donnie and Lorena. The emotions were incalculable, having received the most feared diagnosis. Lorena was devastated. There was profound sadness, anger, anxiety, fear, and guilt. Lorena questioned if she was a bad mother or if she did something wrong that caused Thalia to be this way. Lorena wondered if she would ever again hear her daughter call her “mom.” Lorena began to think that all of the dreams and aspirations she had for Thalia were fleeting, if not unattainable. Lorena was completely dejected when thinking about if Thalia would be able to make friends, attend college, or get married.
Thalia ended up being evaluated by three pediatric neurologists, all of whom arrived at the same autism spectrum diagnosis. The diagnosis by the third pediatric neurologist affirmed a reality for Donnie and Lorena. Acceptance of this reality and developing a plan for helping Thalia were what confronted Donnie and Lorena. How they approached the situation would be a defining moment in the life of their daughter, and their lives. This was the time when Thalia needed them the most. Donnie and Lorena promised each other that they were going to be Thalia’s voice and support system.
Donnie and Lorena knew that emotion could consume them to the point that it affected their behavior. It would have been easy for Donnie and Lorena to feel sorry for themselves, but those thoughts would not help Thalia. The moments of despair and sadness that would inevitably occur would have to be brief, with the focus quickly shifting to what was required to be done moving forward. Donnie and Lorena decided that they would no longer question how and why this happened to Thalia. Dwelling on those questions of causality and trying to assign blame would be irresponsible and also of no help to Thalia. Donnie and Lorena had to be strong and logical. They were about to embark on many decisions regarding Thalia’s learning and behavior development. They agreed to rationally and calmly discuss decisions with one another. Donnie and Lorena were prepared for whatever sacrifices they would have to make on Thalia’s behalf. They were determined to be part of the solution. It was the exact temperament that the situation demanded, and their daughter needed.
Having an official diagnosis rendered by a doctor, from a practical standpoint, made available special education support services provided by the state or the local school district. The state offered Thalia special education instruction twice per week for one hour, and speech and language therapy once per month for one hour. Lisa was a strong proponent of early invention and felt that Thalia needed education and behavior therapy every day for several hours. Lisa asked Donnie and Lorena to let her work with Thalia.
Lisa explained to Donnie and Lorena that she was going to use applied behavior analysis as the teaching method for Thalia. Applied behavior analysis is used to teach communication and social behavior skills to children with autism. Applied behavior analysis uses individualized learning programs that address a child’s needed skills. The individualized teaching allowed for a progression of learning that was based on Thalia’s ability to perform certain tasks. Teachers use positive reinforcement to motivate learning.
Lisa worked with Thalia from June through August for more than six hours every day. Lisa helped Thalia identify and recognize letters, numbers, colors, and objects. She worked on Thalia’s communication skills and her ability to make “I have” statements and “I want” requests. Lisa also taught Lorena some of the learning programs that she was using with Thalia. Lorena would repeat the lessons at night, giving Thalia an additional one to two hours of daily therapy. The nightly learning sessions were not only helpful for Thalia, but they were incredibly meaningful for Lorena, and a reflection of her desire to be part of the solution for her daughter. Thalia’s progress during the time spent with Lisa was immediate, consistent, and noticeable. Thalia began to talk more. She started to verbalize her wants and needs without any prompting. Her play skills and interactions with others greatly improved.
Thalia was enrolled in a school for children who were diagnosed on the autism spectrum when she turned three. It was a school where Lisa previously worked. The teachers at the school implemented the same applied behavior analysis techniques of individualized instruction and positive reinforcement that Lisa used. The feeling was that Thalia would respond well to the familiarity and structure of this teaching method.
Thalia attended the school for two years and her skills developed to the point where she returned to the district’s public school for kindergarten. Thalia was initially placed in a special education classroom. She received individualized speech and language therapy and had a teacher’s aide. The school district soon indicated its desire to move Thalia into a general education, mainstream classroom setting. This became a point of contention between school district and Donnie and Lorena. Donnie and Lorena felt that this was a critical time in Thalia’s development, and that moving her to a mainstream classroom seemed like too big of a jump. They believed that support services were still very much needed for both education and social behavior development, or Thalia could easily regress.
The school district was steadfast in its position and began to put Thalia in more mainstream settings. Lorena was starting to get the impression that Thalia would be completely mainstreamed in first grade, quite possibly without any support services. After hearing from Lorena, Lisa became convinced that the school district was not going to alter its plan for Thalia’s classroom placement. Lisa boldly suggested to Donnie and Lorena that they consider moving to a different school district. Despite being ten years into the mortgage on their house, and having to move to a more expensive community, the decision to get Thalia into a new school district was made with little debate.
Moving to a new school district resulted in a better learning environment for Thalia. Donnie and Lorena felt that Thalia was receiving the support services that she needed. Thalia’s schooling did present some challenges. Thalia had trouble focusing at times in class. This made her anxious and frustrated when she could not quickly figure out the answer to a question or how to complete an assignment. Math was the most difficult subject. When it was decided that Thalia would take math in the resource room, she felt that she was being singled out. Thalia became concerned about what the other students might think of her.
Thalia found it intimidating to see other students completing their work quickly and seemingly without any difficulty, while she struggled to complete assignments. Thalia’s response was to try to be one of the first students in the class to finish an assignment. Being the first student to complete an assignment was in her mind an accomplishment. Finishing quickly, Thalia thought, meant success because she would be thought of as smart by her classmates. Rushing through an assignment, however, led to Thalia not performing at a level that she was capable of had she taken her time.
Several strategies were used to help Thalia deal with her anxiety, and to be able to focus better. Some teachers would put Thalia’s desk at the front of the classroom. Thalia would repeat assignment directions back to her aide. Long-term assignments were completed in increments. Other teachers encouraged Thalia to participate in class discussions and offered her positive reinforcement and verbal praise. Teachers often praised Thalia’s effort and always felt that she desired to perform well in class. Thalia eagerly and thoroughly finished her schoolwork, once she understood what was being asked of her. Thalia’s academic performance was such that Donnie and Lorena never considered having her repeat a grade at any point in her schooling.
As she got older, Thalia wanted a sense of independence and wanted to challenge herself to achieve what she could on her own. At the end of eighth grade, Thalia requested that she no longer have any support services. Thalia did not want the stigma of having an aide as she began high school. Thalia learned that hard work, courage, and determination to achieve were necessary for her to navigate the education and social challenges that she was facing. Thalia demonstrated these personal characteristics throughout high school and college, where she consistently made the Dean’s list. She continues to display them in her career as a school teacher.
Thalia’s improvement may be attributed to the amount and level of treatment that she received. Thalia started with therapy before she was three years old. The number of hours of one-on-one daily therapy, her attending a school that specialized in children with autism, and Lorena working with her daughter provided the treatment that she needed in those early years. Autism is a spectrum disorder, and each child has a unique experience with autism. There are, however, some similarities in the emotional challenges confronted, the sacrifices demanded, and the types of decisions that need to be made. It is stories like Donnie, Lorena, and Thalia’s that might help families navigate the obstacles of dealing with autism and offer them some hope.
ABOUT THE AUTHOR:
John A. Fortunato, Ph. D., is a professor at Fordham University in the Gabelli School of Business, Area of Communication and Media Management. He received his Ph. D. from Rutgers University in the School of Communication. Dr. Fortunato is the author of six books and more than 70 journal articles and book chapters. The contents of this article are adapted from the book Miracle of Effort: Thalia’s Autism Journey (Archway Publishing).
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