The authors of Miracle of Effort: Thalia’s Autism Journey

Interview conducted by
Saikiran Reddy Battula (Extern) and David Celiberti PhD, BCBA-D
Association for Science in Autism Treatment

Interviewees:

Lisa Searls, MA, BCBA (Motivating Change)
Lorena Morsillo
John A. Fortunato, PhD (Professor, Fordham University Gabelli School of Business, Area of Communication & Media Management)
Thalia Morsillo, MA

Lisa and Thalia (1998)

Miracle of Effort: Thalia’s Autism Journey, by John A. Fortunato PhD, provides a deeply personal, inspirational, and insightful look into his close-knit family’s journey with autism. The book follows the experiences of a New Jersey family and their child, Thalia Morsillo, as they navigate the emotions of Thalia’s diagnosis with an emphasis on the unique perspectives and efforts of each family member involved. Dr. Fortunato, Thalia’s cousin, writes the book by delving into the journey of Thalia’s initial autism diagnosis through early intervention and then to her becoming an elementary school teacher.

We recently had the opportunity to interview the family. Through candid conversations with both Thalia’s family and Thalia herself, we gain insight into the pivotal role of early intervention, familial support, and the transformative and enduring impact of compassionate, evidence-based therapy.

One central figure in Thalia’s journey is Lisa Searls, MA, BCBA, a behavior analyst and Thalia’s cousin. Lisa brings a unique perspective, blending her professional experience as a licensed behavior analyst with her personal connection as Thalia’s older cousin. Lisa’s initial concerns and observations about Thalia’s behavior were crucial in ultimately driving the family to seek a formal diagnosis over twenty years ago. Her insights and early intervention strategies played a significant role in shaping Thalia’s developmental path.

Questions for Lisa Searls

Saikiran and David: Lisa, you had the unique perspective of being in the field of autism and ABA, and, as an extended family member, you have both an insider and a long view of Thalia and her development. Can you share a little bit about your initial concerns? How did you broach these with Thalia’s parents? How did those first conversations go?

Lisa: As Donnie and Lorena’s cousin, I often saw Thalia throughout her development as a young child. She has a first cousin one month older than her. I noticed the girls playing together for months. When Thalia started developing language and speaking single words, she could label items in both Spanish and English. At one of our family functions in April 1999, she was 20 months old. Thalia was playing with her cousin and continued to label objects in both Spanish and English. The next time that I saw Thalia was in December at a family party at a restaurant. I noticed, then, that she was no longer labeling items or playing with her cousin. I also noticed that she wasn’t showing any interest in others but, instead, was climbing on chairs to get to the blinds to open and close them as quickly as possible. I noticed Lorena overly anxious about keeping an eye on Thalia and concerned that she would fall down the stairs. It was a look of fear that I recognized from many of the parents with whom I have worked. I was very new to the field and was filled with doubt about what I was thinking and so badly wanted to be wrong. I first brought it up to my mother to get some thoughts on handling what I was thinking. I knew that I was not qualified to diagnose, but I felt that I should inform Lorena about seeing a pediatric neurologist. It turned out that Lorena was having concerns and noticing some behavior changes as well. When we first spoke, she let me know that she brought her concerns to her pediatrician, and the pediatrician told her not to worry – and that Thalia was fine. I had known many other families that were told the same thing by their pediatrician. I knew time was super important and convinced her to see a pediatric neurologist. I told her that, “If the pediatric neurologist says everything is fine, I promise to never bring it up again.” Lorena called me after the visit and Thalia was diagnosed by the doctor as having “Autism Spectrum Disorder – suspected to be Pervasive Development Disorder.” Lorena then told me she was going for a second opinion. The second opinion came back the same. She called me and said she was going for a third opinion. I respected her wishes in wanting a third opinion but reminded her of the importance of getting therapy started.

Saikiran and David: Those are tough conversations to be had, but as you aptly shared, families are receiving what seems to be hard news when access to early intervention is critically needed. How did you tailor your approach to meet Thalia’s unique needs beyond what your background in the field of autism has taught you?

Lisa: We decided to pull Thalia out of her daycare, and I worked with her daily for the summer before she turned three years old. This allowed for both time for therapy as well as natural environment teaching. She became engaged in language, play skills, and self-help skills. We worked on everything from riding a bike while labeling what we saw in the environment, tolerating cutting her toenails, playing with toys, and learning to communicate her wants and needs while having fun. We truly created an environment that produced a love of learning for her.

Saikiran and David: We appreciate how you shared with the reader the vast array of skills that you targeted. What insights did you gain from your experiences within your family?

Lisa: Watching and being a part of what a family goes through when receiving the diagnosis taught me how to be a compassionate behavior analyst. I learned the value of being a listener and a true team member to a family. I was forced to practice the true meaning of a step-by-step skill-progression in our approach with both Thalia and her family, which has taught me that there is no better way. I learned to listen to a family’s needs and choose the most important skills to address first.

Saikiran and David: Such important lessons indeed. What were some pivotal moments where the family came together to overcome systemic obstacles, and what strategies did you find most effective?

Lisa: One of the most pivotal moments was accepting the diagnosis. Lorena and Donnie did an amazing job in doing so and helping the rest of the family accept and get on board with what we were doing. It was no longer the traditional day care and preschool for Thalia and that was not easy for many of the family members to accept and understand. Lorena and Donnie were very involved with the therapy sessions. Lorena continued to work with Thalia in language and taught her family members some tactics to get more language out of Thalia. I think our constant communication, consistency of tactics, and true collaboration were the most effective contributors to Thalia’s progress.

Saikiran and David: Seeking a second opinion, despite the initial opinion from a pediatrician, highlighted the importance of early intervention and advocacy. The pivotal moments, like pulling Thalia out of daycare and the family’s acceptance of her diagnosis, seemed to have been critical in overcoming obstacles and showcasing a compassionate, step-by-step approach in therapy, prioritizing advocacy and long-term success for Thalia.

Questions for Lorena Morsillo

Saikiran and David: Lorena, Lisa shared her experiences and insights to support Thalia’s growth from both a professional and personal perspective. As Thalia’s mother, we would like you to provide a more intimate look into the emotional challenges and early red flags that led to Thalia’s diagnosis. What red flags were you first observing? What were your initial conversations like with Thalia’s pediatrician?

Lisa and Thalia in the Summer of 2000

Lorena: One of the first red flags that I observed in Thalia was hand flapping. In addition, her loss of language and eye contact followed shortly after. Lastly, her state of being “not present” in her environment like she was in her own world. Thalia hit all her developmental milestones, so I was shocked when she stopped doing all the things that she did with ease, such as making eye contact, talking, and engaging in play. As a mother, I felt like something was wrong and I approached my pediatrician about my concerns. She just brushed it off as being a worried first-time mom. She also suggested that it could be related to me speaking two languages to Thalia.

Saikiran and David: You touched on many common experiences families encounter when they initially approach a pediatrician. It must have been heart-wrenching to witness your daughter regress in many areas. What was your initial experience like talking with Lisa? Then, when Thalia received a diagnosis?

Lorena: I remember the day I approached Lisa regarding concerns about Thalia. I asked Lisa to stop by our house and observe Thalia. After she was done observing her, I asked Lisa the following question: “Do you think Thalia is autistic?” She replied that she could not provide a diagnosis and recommended I take her to a pediatric neurologist. I took her advice and made an appointment with the neurologist. When the doctor confirmed that Thalia was autistic, I felt like my world stopped. I began to feel very light-headed, and I felt like I was going to have a panic attack. I would like to add this particular doctor did not describe autism in a positive light. He mentioned that Thalia would most likely not be able to communicate effectively and could possibly have to be institutionalized as an adult. It was a lot to process at the time. It was a very emotional moment.

Saikiran and David: How was intensive early intervention experienced by your immediate and extended family?

Lorena: Thalia’s early intervention was intensive, but she responded well. Our focus was her needs. It was emotional because we knew it was an important time in Thalia’s development. Over the summer, Thalia had therapy for 6-7 hours daily with Lisa, and then I would work with her once I got home from work. Her day was very structured from the moment she woke up to the moment she went to bed. I was constantly making sure she was practicing these skills that she learned in therapy. She required a lot of repetition.

Saikiran and David: Can you share a family moment that illustrated your family support system’s collective effort and strength?

Lorena: It is hard to define one particular moment since there were plenty of situations when our families got involved. My parents helped us with Thalia by making sure she was ready for school and when the bus brought her home for the day. My husband’s family has always been there for Thalia by encouraging her to do her best. As for my husband and I, we put Thalia first in everything. We were a team when it came to Thalia’s education and social interaction. Since she was an only child, we made sure to sign her up for a lot of activities so she had opportunities to interact with others, especially her similar-aged cousins. I also made sure to display encouraging plaques around the house so she knew how amazing she was and to motivate her to always do her best.

Saikiran and David: Lorena, your reflections highlight the determination of a parent navigating a complex autism treatment journey at a time when access to services and high-quality information was more limited.

Questions for Thalia Morsillo

Saikiran and David: Thalia, following your mother’s recollection of your journey, we wanted to hear directly from you. Your memories and experiences offer a firsthand perspective on the impact of early intervention and the experiences of growing up with an autism diagnosis. What were some of your first memories of early intervention?

Thalia: My earliest memory of receiving early intervention services was when I was about 3-4 years old. I remember my cousin Lisa coming over to my house in the summer and working on different tasks with me. I remember that her sister Tricia used to play games with me during my breaks and I really enjoyed that time with her. I also vaguely remember working with a speech therapist at the DLC school and the teachers that worked with me there. I remember that it was a pleasant experience and I seemed to enjoy my time there a lot.

Saikiran and David: What were some of your first memories of starting school?

Thalia: My earliest memory of starting school was when I started Kindergarten at Battlehill Elementary School in Union, New Jersey. I remember being in a self-contained Kindergarten class for part of the year and then being moved into a general education class. I remember the biggest difference between the self-contained Kindergarten class and the general education one was the class size. It was the first time I actually was placed into a classroom with that many students.

Saikiran and David: As you grew older and continued to progress academically, socially, and emotionally, what was it like to have a shadow at school? What role did you play in getting that service discontinued?

Thalia: As I got older, the social stigma of having an adult shadow at school became more real. The other students in the class figured out that the additional adult in the room was for me, and I became very embarrassed. I did not want the other students to think of me as “stupid” or “less than.” At times, I would ignore the shadow or decline their help in fear that I would get picked on by the other students. The role that I played in getting the additional classroom support discontinued was by learning how to be more independent. I learned how to be organized and keep track of my assignments and notes when it came to my schooling. The more I was able to be in charge of my own learning, the less assistance that I needed from the teacher’s assistant. I was also able to actively speak with my teachers and guidance counselors about requesting less teacher support.

Saikiran and David: Can you share another instance where you felt you used your voice to advocate for yourself? How did that go?

Thalia: One particular example that stands out to me was when I was in my freshman year of college. I was taking a required Algebra course, and I was having a difficult time with the material. Math has always been a difficult subject for me and something that I do not enjoy. I had no issue with the particular professor; however, the course proved to be challenging. I was having a hard time keeping up in class and completing the assessments in the required class time. I even received a letter from the university that I was in danger of failing the course. Once I received this email, I immediately reached out to the professor and explained my situation to her. I informed her of my autism diagnosis and how I especially struggle in the area of math. She offered to allow me to take all assessments in her office with extended time. Once I began receiving extended time on my assessments, my grade began to improve. I was able to bump up my final grade and pass the course.

Saikiran and David: What led you to become a teacher? How have your personal experiences shaped your teaching philosophy?

Thalia: When I first began college, I was leaning towards the field of speech pathology. I thought I would enjoy this career because I had many speech pathologists work with me throughout my years. However, when I learned more about the required courses and overall nature of the job, I did not feel like it was a good fit for me. I then began to explore teaching as another option to work with people and make an impact on their lives. I realized that I enjoyed working with children and teaching. My teaching philosophy is firm but fair. I want my students to understand that they can come to me when they need someone to talk to, but that respect is a “two-way street.” I model respect towards them so I expect that they demonstrate respect as well. My goal is for them to learn the required content, as well as learn how to function as a productive member of society.

Saikiran and David: What are your aspirations for the future in terms of your career and personal development?

Thalia: I have been a teacher in the public school system for the past four years. I taught second grade for 3 years in one school district. Then, this past school year I switched to a different school district and moved up to the secondary level as a Middle School ESL teacher. I have really been enjoying this new role that I am in. My aspiration for furthering my career is to eventually move up to high school. I would love to be an elective teacher (i.e., child development class for high school seniors, women’s studies, etc.). I find those courses to be fascinating, and it allows me to be a mentor to future teachers or people working in the education field.

Saikiran and David: How do you envision your story influencing other young adults on the autism spectrum, particularly in terms of pursuing their dreams and advocating for themselves? Do you plan to continue advocating for autism awareness and acceptance?

Thalia: I hope that my story can be relatable and provide hope to other young adults on the autism spectrum along with their families. I want to showcase a positive light and let others know that you are not defined by a diagnosis. I have accomplished many things in my life and I am still continuing to push myself to this day. I plan to continue to advocate for autism awareness and acceptance in the workplace as well as in our daily lives.

Saikiran and David: Thalia, these memories, though initially positive, also highlight the social challenges you faced as you grew older. Your firm but fair teaching philosophy emphasizes respect and personal growth, but in our opinion, also reflects your journey and the values instilled in you through your family’s support. Your aspirations to continue advocating for autism awareness and acceptance demonstrate your commitment to making a broader impact, using your story to inspire and support others on the spectrum.

Questions for Dr. John Fortunato

Saikiran and David: John, Thalia’s journey through early intervention and education, supported by the unwavering efforts of your whole family, set the stage for you to be the storyteller behind Miracle of Effort: Thalia’s Autism Journey, where you shared both the scientific insights of autism treatment with the deeply personal experiences of Thalia and the family, offering a complete picture of her unique and inspiring autism journey. How did you approach balancing the scientific and medical aspects of autism with the personal and emotional journey of Thalia and your family in this narrative?

John: This was a debate at different points of the process – how much of the science and medical aspects of autism and its treatment to include in the book. We ended up deciding to include very little and keep the focus on Thalia’s story. For one, I am not an expert on science matters and certainly did not want to come across as an authority. Second, scientific information took away from what we hoped the book would accomplish by telling Thalia’s story and the emotional aspects of her journey. The little scientific information that is provided in the book is done in the context of the challenge for parents of sifting through large amounts of information that is being presented to them and how confusing it can be.

Saikiran and David: It is often said that if you know one child with autism, you know one child with autism. Given the tremendous diversity that makes up autism, what do you believe are some common themes reflected in your family’s story?

John: That is the challenge of writing about autism. Readers might think there is one book that will provide all of the answers. This book is Thalia’s story. The book recognizes that autism is a spectrum disorder and all children diagnosed will experience the condition differently. There are, however, similarities that are worth discussing: the emotions involved, the effort that is needed, the sacrifices demanded, and the critical decisions that are going to be made. The book provides insight into those aspects. The goal of the book is to help one family better navigate this situation and have greater awareness of what is occurring. Some of the other common themes are the importance of early intervention, not thinking of a child’s behaviors as simply peculiar, and having the child evaluated by a medical professional.

Saikiran and David: You have described the book as “meant to offer insight into the experiences, the challenges confronted, and the sacrifices demanded” throughout this particular autism journey. To what extent do you think Thalia’s story as a focal point highlights broader issues within the autism community?

John: There were different challenges at different points of Thalia’s journey. In her early childhood years, these challenges fell on her parents, Donnie and Lorena, upon seeing some of Thalia’s behaviors. With the help of Lisa, Donnie and Lorena showed courage in obtaining the proper diagnosis and getting Thalia the treatment she needed. They had an overall determination to be a part of the solution for their daughter. That temperament and logical decision-making were needed throughout Thalia’s journey. This attitude turned into the sacrifices demanded, such as the decision to move to a school district that they believed could better meet Thalia’s specific needs. As Thalia gets older, the experiences and challenges then become hers to deal with. For example, her being pulled out of class in school and how she was being perceived by her classmates made her uncomfortable. One of the most interesting takeaways from this book is Thalia saying that her condition is one that she still feels she is dealing with. She views it as a lifelong condition, but she has learned how to deal with any of those issues.

Saikiran and David: John, your description of your writing approach not only illuminates the challenges and victories your family faced but also the broader implications for understanding and supporting individuals on the autism spectrum.

Some Closing Thoughts

Saikiran and David: As we dive into the collective responses from everyone, please know that your voices emphasize the profound impact of early intervention, a strong support system, and the power of advocacy. What lessons can new professionals in the field learn based on your family’s story?

John: The book is very practical for families who are dealing with this situation, as well as
young students aspiring to work in special education. While learning the science and techniques for how to teach children with special needs, this book helps aspiring professionals be aware of the emotional intelligence needed to work in special education by getting some insight into what families and children are going through.

Lisa: This was the first time, as a therapist, that I was truly involved on the family side. After realizing how emotional and challenging this diagnosis is for a family, I knew it was important that compassion be prominent in my interactions with them. I learned that I needed to listen to their needs and create a program that not only addressed Thalia’s missing skills, but also to work at a pace that made the family comfortable and supportive of my approach. This was an important factor in implementing the interventions successfully.

Saikiran and David: How do you envision your advocacy and support efforts evolving, and what specific goals do you have for continuing to raise awareness and support for autism?

John: Although I do not work in the autism field, it is a topic I cover in my Crisis Communication graduate course. The class has a section on perpetual, ongoing crises – how those should be addressed, who is responsible for solving them. The class discusses topics such as how to continue to raise awareness and provide the most accurate information to the general public. What are the media messaging strategies for how professionals can speak about autism that will have an impact with the general public? I use an academic journal article in the class that Lisa and I co-authored that discusses the components of successful health-care campaigns and communication messaging.

Thalia: I plan to continue to raise awareness about autism as well as provide accurate information about the diagnosis. In this digital age, there is a lot of misinformation circulating and I hope to provide clarity and true facts on what it means to be on the spectrum. I preach kindness and acceptance on a daily basis in the classroom and my goal is to broaden my audience.

Your story is not only a reflection of your incredible persistence to succeed but also a reflection of the importance of early intervention and the strength of family. Thank you, Thalia, Lorena, John, and Lisa, for sharing your inspiring story and highlighting the profound difference that unwavering support can make.

Citation for this article:

Battula, S., & Celiberti, D. (2024). The power of early intervention: An inside look with the authors of Miracle of Effort: Thalia’s Autism Journey. Science in Autism Treatment, 21(9).

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The Power of Early Intervention: An Inside Look with the Authors of Miracle of Effort: Thalia’s Autism Journey