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What Are You Trying to Tell Me? Neurodevelopmental Disorder Care Across North Carolina

MAY 2023

About one in six children across the United States has a developmental disability, according to the Centers for Disease Control and Prevention (CDC). Identifying challenges in infancy allows for a child to be more successful as they grow. When a disability goes undetected, this key intervention window is missed.

The fan on my living room ceiling reminds me of a carousel. It spins continually throughout the day, ejecting a breeze from the endless motion of its five wooden blades. After finding an anomaly at which I can fixate my attention – the scratch on a blade or a certain horse on the carousel – I can then decide with certainty once it’s completed a full rotation. Watching the fan spin is soothing; it provides a fresh white noise to an otherwise muted room.

I am able to extract pleasure from watching the fan, but I can also get off the carousel and direct my attention elsewhere. As a child, I taught my Ken doll how to do the splits and broke his legs in the process; I ran outside the playroom and told my mom we’d need to get a new one. Modernly, I sit down to work on my thesis. When I sit down to write, I phone my friend Sarah and ask how her own work is coming along. The fan continues to spin while I perform these tasks and it is no longer the object of my attention, nor is it all that fascinating to me anymore. I feel its breeze throughout the day but its white noise is no louder than the sight of my Ken doll missing a leg or my curiosity of Sarah’s progress.

An autistic child may find the vignettes I’ve described distant. Rather than running to show mom their broken doll or engaging with a friend over a shared task, the fan has instead captured their attention and drowned out alternative interactions.

About one in six children across the United States has a developmental disability, according to the Centers for Disease Control and Prevention (CDC). Conditions such as autism spectrum disorder (ASD), attention hyperactivity deficit disorder (ADHD) and speech disorders are a few that fall within this category. We encounter their presence frequently in society – among our friends, among our peers and within our families. In spite of this, we lack sufficient regard for the unique attention such disorders require. While we’ve accepted the diagnoses, we haven’t made amends with the societal changes they require.

When parents notice something different about their child, they first turn to the pediatrician. The American Academy of Pediatrics (AAP) advises parents to have infants developmentally and behaviorally screened at 9, 18 and 30 months old. Clinicians assess the infant’s abilities up against what’s expected of them by that age, like being able to play peek-a-boo at 9 months. Pediatricians are responsible for detecting atypical behaviors and referring children for additional testing when necessary. 

“What we see with kids with autism is a lot of times they might not be as interested in the same things you would a expect a toddler to be interested in,” said Sallie Nowell, a research scientist at the Frank Porter Graham Child Development Institute in Carrboro, N.C. “They might have repetitive behaviors where they really want to look at, say, a ceiling fan or an air vent because it’s blowing and that’s fascinating to them.”

Distinguishing atypical behaviors from those to be expected of a toddler can be difficult. What makes a ceiling fan that spins different from the wheels on a toy car, for instance? Atypical interests and behaviors become concerning when the child fixates on objects rather than people. The interactions and conversations they would be having with a parent or their peers instead go awry. 

“Parents kind of disengage, because the child’s not playing with the toy they got out or they don’t really know what to say about an air vent,” said Nowell, and the parent might walk away when they’re at a loss for common ground. “Typically-developing toddlers, even if they’re interested in something random, don’t let you walk away. They’re constantly like ‘Mommy, watch … Mommy, look at this.’”

When a child’s disability goes undetected, an important intervention window is missed to reroute their earliest understanding of interaction and behavior. Autism and other developmental disabilities, however, can display similarly. In turn, clinicians might misdiagnose a child or hesitate to label their behavior altogether.

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Doug Brown is a certified public accountant (CPA) from Browns Summit, N.C. He and his wife, Angie, are parents to Micah, 16, and Abby, 10. When Micah was a toddler, Doug and his wife noticed something different about Micah. The first giveaway, Doug recounted, was that Micah didn’t speak. When Doug and Angie voiced concerns to Micah’s pediatrician, they were met with a dismissive “boys just talk later than girls.” 

“The man … bless his heart, did not impress me,” said Doug. “He was just not up on it like he should have been.” It was Angie who kept pushing for additional testing, as she suspected Micah to be autistic. Eventually, the family was referred to the Children’s Developmental Services Agency (CDSA).

Clinicians were hesitant to diagnose Micah with autism, as he displayed behaviors most autistic individuals struggle with. He’s sociable, likes people and makes good eye contact, noted his father. Rather than autism, doctors diagnosed Micah with pervasive developmental disorder not otherwise specified (PDD-NOS).

“I’ll never forget that phrase,” said Doug. “You’re just saying we have no idea exactly what’s wrong with him, but we know something’s not right.” Doug and Angie already knew that.

Micah was born in 2006, seven years before the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-V) was published in 2013. PDD-NOS, would be classified as an autism spectrum disorder in the new edition. 

While Micah was diagnosed early in life when he was 3, many parents are given the run-around before reaching an autism diagnosis. Jennifer Nitkin’s son Jeremy wasn’t diagnosed with autism until he was 12 years old. Jeremy’s behaviors were first explained by three separate diagnoses, none of which addressed his underlying autism.

“When he was in preschool, we started noticing that he was having trouble sitting still and his teachers would tell us he was a little wound up and all over the place,” said Jennifer. “We started with the ADHD diagnosis. Then, he started getting a little obsessive about things – throwing tantrums if things didn’t go his way or if things changed up on him. So they gave him the OCD diagnosis.”

Jeremy’s doctors would go on to say he had a mood disorder. After three different diagnoses, he was then told he too had pervasive developmental disorder. Jeremy will be 22 in June. This dated diagnosis, once more, is now considered autism.

While clinicians spend months – or even years, as in Nitkin’s case – sounding out explanations for why a child behaves in a certain way, that child misses out on services that can aid them in their challenges. In the field, this is called early intervention.

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Attaining early intervention services is a child’s legal right. In compliance with the Individuals with Disabilities in Education Act (IDEA), the state of North Carolina is required to provide early intervention services to eligible children up until they’re 2. After which, the school system is then responsible for providing needed services – such as speech or occupational therapy. 

In order to get services in school, children must meet eligibility criteria which differs from a traditional medical diagnosis. Rather than assessing students for a set of conditions that lead to a culminating diagnosis, children are instead deemed eligible if their impairment impacts their academic success. The North Carolina Policies Governing Children with Disabilities, Section NC 1503-2.5(d) establishes 14 categories children must fall within in order to qualify, ranging from autism spectrum disorder to visual impairment. Eligibility criteria is inclusive of both physical and mental disabilities. 

“From the evidence we have, at least high quality early intervention services are really critical in the early developmental period when neural connections are being made. It’s almost cause and effect with socialization, where you want the child to be giving something and the caregiver to be responding so the child gets reinforced,” said Nowell. “That’s what forms those critical foundations for language development, cognition and general social interaction.”

Jocelyn Ruffin is a teaching instructor at East Carolina University (ECU), and all too familiar with early intervention services, both through her career and role as a mother. At ECU, she teaches in the Human Development and Family Science department and previously worked as an early intervention provider in Boston. Both of her children – her daughter, Jacquelyn, and son, Joseph – were provided early intervention services in infancy that changed their skill set trajectories. 

Jacquelyn attended the same preschool where Jocelyn once worked. She struggled immensely with separation anxiety, particularly when it came to leaving Jocelyn or parting with her Aristocats white stuffed cat, Mimi. “She dragged Mimi everywhere,” said Jocelyn. Jocelyn recalled a time her class and her daughter’s passed one another at school; Jacquelyn broke down when she was unable to follow her mother back to class. Jacquelyn was disruptive, so Jocelyn was told, and the family would need to find an alternative to traditional daycare.

“It made me sad,” said Jocelyn in reflecting on her daughter’s daycare experience. “As an educator I was teaching other children that cried when their parents dropped them off, and I had to find ways to soothe them and help them get through it. So why wouldn’t anybody take that time to help my daughter?”

Eventually, Jocelyn and Jacquelyn’s father worked out a schedule where one parent could always be home with their daughter – an at-home intervention Jocelyn’s work experience help informed. 

Jacquelyn’s father, who was in the military at the time, would work nights while Jocelyn worked during the day as a preschool instructor. They planned out activities for Jacquelyn and her father to do throughout the week. One day they’d visit Barnes and Noble and the next they’d go to the park with the intent of exposing Gabi to similar interactions daycare might provide, albeit without the bouts of separation anxiety.

To supplement their at-home daycare remedy, an early intervention therapist came to their house to work on Jacquelyn’s anxieties. Over time, she would build trust with the therapist through play, and become more at peace when it was time for Jocelyn to leave the room.

“She would tell me to go wash dishes or go do the laundry, just to see if [Jacquelyn] could tolerate me being in another room while they were playing,” said Jocelyn of the early intervention therapist. “They would play in her room a lot and eventually come out in the living room so she could still see that I was there, but doing something else.”

Over time, Jacquelyn’s separation anxiety became less prominent. Now 15, she struggles from time to time when her mom has a conference out of town or when she flies up to Boston to see her dad, but it is no longer as paralyzing a feat.

“Now she’s an honors student. She’s a social butterfly. She separates from me, she goes to school, she hangs out with friends,” said Ruffin. “Early intervention did that for her.”

Once children grow beyond their toddler years, the school system is then responsible for providing children with intervention services. As was the case with Jocelyn though, parents aren’t always satisfied with the efficacy of those services. A medical diagnosis makes attaining those outside of the school setting feasible. 

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In early February, I spent a day at the Carolina Institute for Developmental Disabilities (CIDD) in Carrboro, N.C. to understand what evaluating a child and diagnosing them with a disability entailed. In an office park tucked off NC-54, a team of clinicians – a speech language pathologist, a psychologist and two interns – spent three hours with a four-year-old boy to determine whether or not he was autistic. For the sake of patient privacy, I will use a pseudonym, Paul, to describe the evaluation. Paul spoke minimal English, so a translator joined as well.

The day started in a conference room at the CIDD. At 8:30 a.m., the team congregated to discuss the case that lied ahead. They reviewed Paul’s medical history and the testing he would need. Once the family arrived around 9 a.m., the group congregated in an observation room. The boy and his mother sat at a circular table across from the team who explained the day’s plan. The translator bridged the gap between the clinicians’ English and the family’s Spanish. The speech language pathologist was also bilingual. 

The evaluation began with an intern. She sat across a child-size wooden table from Paul and presented him with a thick spiral notebook. Within the book, there were pages and pages of matching assessments. Good job, Paul. Can you match this shape with its pair? Which image of a tree matches that of a park? Not quite …. How about this one? Good job. Let’s complete this puzzle now. Which of these blocks is missing?  

I split my time watching these scenes unravel behind a mirrored window and the conference room where the team originally congregated. In the latter, I was joined sporadically throughout the day by members of the evaluation team. The evaluation was projected onto the wall by way of a camera placed in the corner of the observation room. As Paul completed various puzzles, the psychologist explained to me the point of the activity: the goal was not for Paul to complete the task, but to see how he asked for help when he realized he needed more materials he had not yet been given. Paul flapped his hands between placing pieces and searching for the next.

Once the intern wrapped up her portion, the speech language pathologist took her place and completed the Autism Diagnostic Observation Schedule, more commonly known as ADOS. She engaged in play with Paul to assess communication, social skills, play and other behaviors. Did he engage in pretend play when presented with a baby doll? In what ways did he communicate throughout the interaction, if at all?

Around noon the team returned to the conference room to discuss their findings while the family broke for lunch. Each member scored the child’s tests in silence, announcing their findings afterward. They debriefed their knowledge-informed observations of the child’s behaviors, discussing gray areas. Can it be said Paul responded to his name being called if he did so verbally but didn’t shift his body in response? Once they’ve reached a conclusion – informed by both testing and professional opinion – they meet with the family at 1 p.m. to discuss their findings.

The process, though thorough, is a lengthy one. Clinicians spend almost an entire work day engaging and interacting with a child in order to get a passing glimpse into their inner world. At the day’s end, only one more family has received a diagnosis; it’s an all-day affair. Parents throughout North Carolina turn to institutions like the CIDD and TEACCH to receive a medical diagnosis for their child. For children like Paul, this diagnosis can open doors to therapies and medication outside the school setting. 

These institutions, however, are burdened with long waitlists. When a child is placed on a waitlist, those critical foundations Nowell described are asked to be put on hold too. For Jacquelyn, it was paralyzing separation anxiety that made every day functioning burdening. An evaluation waitlist runs up against a ticking biological clock and the difference intervention can make. Let it be known that this is not to say a window passes where a child must be “fixed,” as that is not the case. Instead, it’s a time where challenges can be alleviated, like being able to separate from mom when it’s time to go to school.

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The barriers I’ve described are nothing new to North Carolinians with developmental disabilities. Individuals and their families endure a never-ending ride of understanding their own needs while begging others to do the same. The longer a child is asked to wait – be it for an autism diagnosis that explains why the fire alarm ringing at school overwhelms them, or to see an occupational therapist to help them with their handwriting – the longer they wait for an improved quality of life.

Each horse on the carousel is different, but they all endure the same journey – one of a cyclical nature that’s hard to depart from.

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