Introduction
Let me wax poetic about my extraordinary son Ian. Now 7 years old, Ian is a prolific reader of books. Having taught himself to read by the age of 2 ½, he can zoom through volumes at lightning speed and recall most of what he gathers. Ian is also a pro at gaming and began to code at the age of 5. He relishes playing recreational soccer, beating me in chess, engaging in board games with his sister and lavishing his dad with bedtime cuddles. Ian has a hilarious sense of humor, delighting in telling jokes and bursting into non-stop giggles. Ian also has ASD, or Autism Spectrum Disorder, a constellation of traits characterized by repetitive behaviors, difficulties with social skills and challenges in communication, traits which, although they pose demanding, help to illustrate and embody who Ian is, an altogether wonderful and lovable son.
Symptoms
Prior to his first birthday, I noticed telltale signs that Ian was neurodivergent. Although Ian was a cheerful baby, he avoided looking me in the eyes, hesitated to follow instructions and struggled to understand what I was saying. As months passed, Ian seemed like he needed a screen, or risk losing focus, oftentimes becoming overstimulated by his senses. Once he reached 18 months of age, I noticed he struggled with gestures, such as saying hello and goodbye, and failed to respond to his name when called. When I raised these issues to family and friends, they would advise me not to worry, that he’s still developing and that boy’s are late to communicate. And so I waited, casting aside my concerns, even though this feeling continued to skim the surface of my mind.
Nearing Ian’s 2nd birthday, we scheduled Ian for his 2 year appointment with this Pediatrician. The Pediatrician performed his routine screening and questioned whether Ian spoke in 2-word sentences. I replied that not only did Ian struggle to speak in 2-word sentences, but that he experienced challenges with verbal communication as a whole. Additionally, Ian engaged in echolalia, a condition where the child repeats words and phrases irrelevant to the conversation. For example, when I would ask Ian, “Ian, what’s your name?”, Ian would reply “Ian, what’s your name?” rather than responding with, “My name is Ian”. Although echolalia is developmentally appropriate for children who are learning to communicate, it is a red flag for speech and language delay in older toddlers. Ian’s Pediatrician immediately directed me to call Nassau County’s Early Intervention Program, “a developmental evaluation and services program administered” for children with Special Needs. To qualify, “children must be under 3 years of age and have a confirmed disability or established developmental delay… in one or more of the following areas of development: physical, cognitive, communication, social-emotional and/or adaptive”[1]. Finally, a professional validated the continuously nagging feeling I had experienced all along. It was both liberating and infuriating at the same time since, had I followed my instincts earlier, Ian could have received services earlier on.
Paradoxically, six months passed before I gained the courage to contact the Early Intervention Program (EIP). Although I always felt something was amiss, I was at times in denial that Ian had developmental delays. What if I was exaggerating his symptoms? What if what I told the pediatrician was all in my head and he provided the wrong diagnosis? Ian was still his quirky, hilarious, lovable self and it was difficult for me to admit that he was battling underlying speech and motor delays when, during our daily interactions, he seemed so cheerful and neurotypical. Sometimes, he really would speak in sentences and form connections with others. But other times, he was lost in his electronics, his mind and body in disarray, unless provided with a screen or other sensory items.
Early Intervention (birth — 3 years)
The Evaluation
After finally calling Nassau County’s EIP in August 2017, Ivan and I met with an Initial Service Coordinator (ISC) who reviewed our rights and provided us with a list of evaluators. During Ian’s evaluation at our home, he underwent several exams to test his gross motor skills, fine motor skills, speech and language development and overall behavior. The developmental therapist performed a play-based evaluation, observing and communicating with Ian during the session. As the evaluation progressed, Ian was so overstimulated, that his actions were reduced to giggles and a constant need to become lost in our hugs. Ultimately, Ian scored in the bottom 2nd percentile for speech and language development, with 98% of those in his peer group performing better than Ian did in the speech and language section of his exam.
The Diagnosis
Through the evaluation, Ian was diagnosed with Language Processing Disorder and Sensory Processing Disorder, results that Ivan and I were surprised with since we fully expected Ian to be diagnosed with ASD based on our experience during Ian’s evaluation. With Language Processing Disorder, Ian has difficulty comprehending language and has trouble understanding the words spoken from our mouths. Sensory Processing Disorder means that Ian experiences his senses differently from the way neurotypical individuals experience taste, touch, sight, hearing, smell, vestibular movement (e.g. sense of balance) and proprioception(e.g. sense of body position relative to space). For example, in terms of Ian’s vestibular faculties, he has challenges with balance and oftentimes trips or falls when walking. For the longest time, Ian was unable to sit up from a lying down position and would have to roll to his side and prop himself up with his arms before finally getting up on his own. As a toddler, his challenges with executive functioning and low muscle tone prevented him from learning to ride a tricycle. In class at school, Ian frequently gets out of his chair to initiate movement since his core and ability to sit upright prove challenging.
The Individualized Family Service Plan
Immediately after receiving Ian’s results, our wonderful ISC set up a meeting to create our Individualized Family Service Plan (IFSP), a written outline of the EI services Ian will need. Together, we scheduled Speech Therapy 3x/week, Occupational Therapy 2x/week and Physical Therapy 2x/week, the latter two of which were administered at a nearby sensory gym.
Ian’s Nursery School
During this time, in Ian’s nursery school, he had almost no friends, was obsessed with the alphabet, and would create letters out of play-doh, manipulating them for hours. His teacher at the time believed that Ian was disobeying instructions purposefully and would berate him often. One day, as I viewed his nursery school classroom through a two-way mirror with another assistant at the school, I witnessed Ian speaking in class, then subsequently getting yelled at, pulled to a corner and placed in time out. Ian, who loves books, found one with a piece of wrapping paper still attached to it. I watched him gently remove the wrapping paper and begin reading the book. I waited until the end of the day during pick-up time to ask the offending teacher how Ian fared in class. The teacher lamented that Ian stormed off to a corner and began ripping up books in anger. After listening to her account, I felt so grateful to have been present that morning to witness the truth and confidently refute her false accusation. I promptly responded that I was there, that I saw everything and that her narrative was egregiously inaccurate.
Fortunately the Principal of the school, a staunch and compassionate ally, and someone I will be forever grateful to, immediately switched Ian to a classroom with a teacher who was more honest, compassionate, and who knew how to interact with a child with special needs. I can say with utmost conviction that this new teacher played an integral role in saving our son’s life.
Initial Results
After 2–3 months of therapy coupled with the transition to his new class, Ian was not only smiling, but he was thriving. Ian was starting to comprehend language, was communicating back appropriately and with relevant responses, started interacting with his peers, initiated conversations with schoolmates, was smiling frequently, and exuded unadulterated joy. When I would transport him to his Speech, Occupational and Physical therapy sessions, I would meticulously watch and absorb his lessons and review and implement them at home to facilitate continuity of care. I took what he loved, which was the alphabet at the time, and rather than taking it away, I utilized it as a motivational tool to help Ian learn language. For example, Ian and I would play hide and seek with the letters of the alphabet. Some letters were hidden under the sofa cushions, others tucked away behind the curtains. Once discovered, I would repeat, “Great job! You found the letter A under the pillow!”. This way, I taught him prepositional phrases playing games with something he loves. In that astoundingly short amount of time, his teachers, his therapists, and his family were able to collectively come together and nurture Ian’s developmental improvements. Starting intervention early and continuing what he learned in therapy both at school and at home is really what helped Ian improve so swiftly.
The Committee on Preschool Special Education (ages 3–5)
Ian’s Incredible Results
Right before Ian’s 3rd birthday, Ian transitioned from the Early Intervention Program to the Committee on Preschool Special Education (CPSE), the program that delivers similar services to children between the ages of 3–5 who have developmental needs in the school district. An Individualized Education Plan (IEP) was created with my feedback within which we listed the recommended services to be provided to Ian, how often and for how long, and within the Least Restrictive Environment (LRE). Through CPSE, Ian obtained Speech, Occupational Therapy and Physical Therapy services for 2 more years. In March 2020, one month after his 5th birthday, Ian was reevaluated and was found to be in the 97th percentile for speech and language expression. In other words, as a 5 year old, Ian could express language as if he were 7-years old. Needless to say, Ian was quickly transitioned out of CPSE in June of 2020 as a result of his spectacular developmental advances, a decision we couldn’t be more than thrilled to experience.
The Covid-19 Years
Remote Learning
As the next few years progressed, we were collectively faced with Covid-19, an unprecedented pandemic of global proportions. For 11 months, Ian and his older sister, Arianna, who was diagnosed with ADHD, attended their local public school remotely, an environment within which Ian surprisingly flourished. Once the children returned to in-person learning in February 2021, both Ian and Arianna were blossoming the more they interacted with their peers, especially during playtime afterschool.
The Regression
However, once Ian entered 1st grade in the Fall of 2021, Ian began to regress. This decline coincided with a decrease in Ian’s outdoor play after school, a loss of creating meaningful connections with friends and the addition of a classroom bully. Ian seemed to always be bored, moody or angry. When his older sister or other classmates would attempt to initiate play, Ian would balk and storm away if the games that were played didn’t follow the strict rules and guidelines he believed constituted the rules of the game. In fact, he would be inconsolable when rules were broken or routines were changed, and it would take a long time before we could help him regulate his emotions.
In class, Ian was rarely seated, frequently leaving his seat and bouncing around within the classroom. He would express to me how “bored” he was because he “knew everything”. Enrolled in a Spanish Immersion program in his school, Ian would take his classes in Spanish for 4 hours and then learn in English for the rest of the day, acing all of his classwork and exams. His report card was decorated with “M”s for “Mastery” in Math, Reading, and Science. And as his Spanish and English teachers would communicate the lessons, Ian could be found doodling in a notebook dutifully provided by his incredible teachers when they seemed to notice that Ian needed the extra time to fidget, move and scribble.
Does Ian Have Undiagnosed ASD?
My husband Ivan and I felt that Ian may have undiagnosed Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder(ADHD), although Ian no longer qualified for services and had been evaluated for autism twice when he was 3 years old. Back then, I remember sharing Ian’s evaluation with Ian’s new preschool teacher at the time, the one who saved Ian, and both of us being shocked when he wasn’t diagnosed with ASD. Ivan had been immersing himself in books such as “Look Me in the Eye” by John Elder Robison and “A Parent’s Guide to High-Functioning Autism Spectrum Disorder” by Ozonoff, Dawson and McPartland and often encouraged me to read these books on my own. From these books, Ivan continued to discover more evidence suggesting that Ian may indeed have ASD.
Our wonderful physician friends would also hint that Ian may have ASD. I remember one friend sent me books about ASD by Temple Grandin, proposing that I begin reading them after Ian had a few playdates with her son. Another physician acquaintance was even more direct, gently advising that we have our son re-evaluated for ASD after a playdate with his son.
Trying to Obtain Another ASD Evaluation
As a result, Ivan and I had been in close contact with the school psychologist, who we asked to perform an evaluation of Ian based on teacher and parental feedback from the beginning of the school year. The psychologist took approximately 4 months before she communicated her results to us, results which came only after Ivan and I contacted our district’s Committee for Special Education Team to bemoan the psychologist’s delay in feedback. Once we finally received the results of the evaluation, we saw that it indicated Ian may indeed have ASD. Ian’s pediatrician referred us to a few developmental pediatricians in the area. However, upon contacting them, we were alarmed when we were told that the next available appointment was in 6 months. And when the receptionist at the developmental pediatrician’s office missed my email with all their requested documentation, I was further dismayed to learn that we would have to wait until the following year in April 2023 for an appointment to evaluate Ian for ASD.
The ASD Diagnosis and 504 Plan
Fortunately, we have an incredible friend who works with Special Needs children. During our conversation, she instructed that we contact a child psychologist, who also has the capability of evaluating and diagnosing autism, a resource that, until then, I was unaware I could utilize for diagnostic purposes. Within 2 months, I was able to secure an appointment for evaluation and began to collate the school psychologist’s documentation for the private psychologist to review. During the actual evaluation, the private psychologist scanned the results of our school psychologist’s documentation in addition to asking me and Ian about his developmental history. Based on our collective responses, the psychologist diagnosed Ian, who was 7 years old, with ASD, almost 5 years after Ian had his first evaluation performed with Early Intervention at the age of 2 ½ years.
The psychologist was quick to mention that since Ian’s ASD is of the high-functioning variety, akin to what used to be labeled Asperger’s syndrome until the DSM-5’s revision in 2013, Ian is not eligible for ABA therapy, “a type of therapy that improves social, communication and learning skills through reinforcement strategies”[2]. Fortunately, we were able to take Ian’s newfound diagnosis and have our school psychologist create a 504 plan, “a blueprint for how the school will support a student with a disability and remove barriers to learning”[3].
Current Challenges
Despite Ian’s ASD diagnosis, I noticed that since Ian’s ASD manifests differently than society’s stereotype of autism, many peers and adults around him fail to take his diagnosis seriously. For example, Ian had a guitar teacher who would lose his temper when Ian was physically incapable of packing away his guitar due to his fine motor weaknesses. When I would attempt to educate the teacher on Ian’s autism diagnosis, the teacher would reply, “he’s able to do everything. He’s just messing with you”. If Ian advocated for himself or disagreed with the instructor, the guitar teacher would have him raise his hands high above his head and hold it there as a form of corporal punishment. When Ian one day came home and relayed his guitar teacher’s misconduct, my husband, Ivan, immediately marched into the guitar studio with Ian in tow. By taking Ian along, Ivan wanted to teach Ian to stand up for himself against an authority figure knowing that he has his parent’s full support. Ivan respectfully yet sternly communicated how the guitar teacher’s behavior was harmful and that we will no longer have Ian learn the guitar under his tutelage. I could only imagine what could have transpired instead if Ian was non-verbal. We would have likely never known that the abuse even occurred.
It Takes a Village to Raise a Child
Throughout these years, it really took a village to nourish and galvanize Ian’s developmental achievements. Consisting of his pediatrician, his school, his teachers, his therapists, our friends, his psychologists, and his family, we were able to collectively provide therapy, social skills, patience and compassion so Ian can not only survive, but thrive in this complex world. By providing Ian the groundwork with which to navigate his social interactions and regulate his emotional state, Ivan and I hope that Ian is able to experience a quality of life replete with indelible and joyous memories. We have to be our children’s biggest champions and instill in them the confidence that not only do they belong in this society, but they are integral to its evolution. Our world needs different types of minds and we feel blessed to have the privilege of raising our son Ian in all his neurodivergent brilliance.
[1]nassaucountyny.gov/DocumentCenter/View/12555/Early-Intervention-webpage-1-top-half-07_2015?bidI=
[2]https://www.healthline.com/health/aba-therapy
[3] https://www.understood.org/en/articles/what-is-a-504-plan