Our Autism Journey: Solving the Puzzle
By Nikki C | Published on March 9, 2021 | 7 Minute Read
Quinten was born an 8lb happy baby boy. He was the second and last of two children, both boys. During his initial pediatrician appointments, Quinten passed all of his examinations with flying colors. It was not until he was 18 months that my husband and I began to have some concerns about his development. Although Quinten was 18 months, he had not yet started to say, Mama or Dada. If we asked him to repeat it, he could, and if we said, where is Mama, he could point me out. However, Quinten was almost two, and he had never called out for either one of us. We pointed out our concerns to the pediatrician, and he said that it was developmental and that we should give it more time. So, we gave it more time, and it did not get any better, and when we went for his two-year checkup, we really pressed the issue, and the pediatrician finally said that he should be talking more at two years old, and he gave us a referral for a speech evaluation.
I am an educator, and at the time, I had been in the profession for twelve years. During my career, I worked with a diverse population of students and had worked with students who had autism. I also completed checklists for students who were in the process of being identified as autistic. As an educator, I started checking this list off in my head concerning my son. At my son's two-year checkup, I brought up the possibility of autism to my pediatrician. He said he did not think that was the case but did admit that Quinten had a speech development delay, which is why he gave us the referral for a speech evaluation. So, we took Quinten to Early Steps, and they completed his speech evaluation. At the end of the speech evaluation, they gave us the evaluation results and determined that he did qualify for speech therapy. One lady, who had been a part of the evaluation, said, "I don't mean to offend you, but have you ever thought about having him evaluated for autism?" I broke out in laughter and told her that I mentioned it to his pediatrician, and he dismissed it and gave me a referral for a speech evaluation. She said I will write a need for an autism evaluation in my findings, and he will have to provide you with a referral for an autism evaluation. I drove from the speech evaluation directly to the pediatrician to hand-deliver the speech evaluation results. The next step in our journey was to take the referral we finally received from our pediatrician to a neurologist to evaluate Quinten for autism. Quinten was two and a half years old when he was officially diagnosed with Autism Spectrum Disorder (ASD). He received speech therapy through Early Steps until he was three, which is the age that Early Steps end. He was then placed in Child Find and was able to go to a public school with an autism program every day from 8 am-2 pm.
"Every challenge we encountered allowed us to learn something new about autism and treatment for our son"
From diagnosis to starting public school at the age of 3, we also began to research different behavioral options to support Quinten on his journey. We eventually decided that Applied Behavior Analysis (ABA) would benefit him if we started early. “ABA is a type of therapy that can improve social, communication, and learning skills through positive reinforcement. Many experts consider ABA to be the gold-standard treatment for children with ASD or other developmental conditions” (Raypole, 2019). We were so excited about Quinten being able to go to ABA to jumpstart his treatment. However, our excitement soon faded when we realized that our insurance was unwilling to pay for ABA therapy.
In our ABA therapy research and locating a center that would best work for Quinten, we learned that ABA therapy was not cheap, and it was similar to paying a daycare bill. Our insurance company would be responsible for paying the bulk of the bill, and we would pay our co-pay for every day he had therapy. The insurance company put up an excellent fight to deny Quinten's ABA therapy. Luckily for us, the center we decided on for ABA therapy helped us fight the insurance company back just as hard. The insurance company finally approved Quinten for ABA therapy, and he attends Monday-Friday after school, and any day that the public school is closed, he attends ABA from 9 am-4 pm. ABA therapy has helped us understand Quinten and his journey a lot more. We have learned appropriate strategies to implement to help with his behavior, communication, and independence.
Although our journey had some hiccups along the way, it was all worth it. Every challenge we encountered allowed us to learn something new about autism and treatment for our son. We figured out very quickly that we would have to be Quinten's biggest advocate on his autism journey. We have also learned that we can still do the things we used to do; it just looks different because Quinten sees the world differently, and we have to adjust to his perspective sometimes. Our journey has led me to write a children’s book about how Quinten copes with autism. We are totally in love with the world that Quinten has introduced us to, and we are trying our hardest to be advocates for anyone with autism.
About the Author
Author Nikki C. has served in public education for fifteen years. As a dedicated educator steeped in developing and delivering valuable educational practices, Nikki C. has taken the opportunity to work with many diverse and unique students. Her teaching career exposed her to the methods of identifying and evaluating characteristics of autism in students she served when early signs of developmental delays were detected. It was this valuable training that allowed her to observe distinct characteristics in her child many years later. With a diagnosis of autism confirmed for her son in 2018, Nikki committed to deepening her understanding of autism and share that awareness in her personal and professional life.