Ben and Sally Tyler’s 5-year-old son often threw temper tantrums and fits that spun their household out of control.
When their pediatrician raised the possibility of autism, they took Corey to a neurologist who asked a handful of questions and made an incorrect diagnosis on the spot.
“He asked, ‘Does he have friends at school? Does he play with other kids?’” Sally said. “We answered ‘Yes,’ and he said, ‘Well he’s not autistic then. Autistic kids typically keep to themselves and are more focused on objects than playing and socializing.’”
The neurologist did correctly diagnose Corey with ADHD, and the Tylers enrolled him in play therapy.
But Corey’s struggles continued. Although extremely intelligent and gifted academically, Corey would crawl under his desk at school, become easily distracted, and often not pay attention to the teacher. At home, he’d panic and fly off the handle, thinking he was in trouble if his parents asked him to make his bed or brush his teeth while he was busy playing or doing something he enjoyed.
Corey had also developed some sensory processing issues, such as wearing socks to bed at night because he disliked the texture of the cotton sheets. He felt unable to walk barefoot on the carpeted floor and constantly applied lotion to his hands and feet before getting dressed, protecting himself from the textures of the clothes. He also became resistant to getting off his electronic devices and believed he was drowning in demands from his parents.
‘We kept searching’
The Tylers enrolled Corey in occupational therapy, but they also wondered if he had oppositional defiant disorder (ODD) because of how he’d lash out at them when he felt overwhelmed with requests.
“We didn’t know the full extent of some of the things he was dealing with,” Ben said.
“It took us years of watching him going off the deep end, always having fits of rage and tearing things up, being destructive. It just didn’t feel right,” Sally said. “We kept looking for other answers. We kept searching.”
When Corey was 10, Ben and Sally took him to a different neurologist, who referred them to an ODD specialist. Although Corey was found not to have oppositional defiant disorder, the specialist suspected autism and referred the Tylers to an evaluation expert, Dr. Marilyn Monteiro, PhD.
Monteiro’s approach was different. She had puzzles and Rubik’s Cubes for Corey to work on because those things interested him. She also engaged him through conversation about why he liked things or reacted in certain ways.
“She made him feel comfortable and gave him some confidence, and he was able to open up with her,” Sally said. “In a way, she was able to identify with him and help him to understand that what he is feeling is okay because that’s how his brain works—it’s just different than other kids.”
Misunderstood and misdiagnosed
Monteiro has authored a widely used and recently updated autism evaluation tool, the MIGDAS-2, as well as the book Autism Conversations: Evaluating Children on the Autism Spectrum through Authentic Conversations. She said students like Corey are often overlooked at schools, which are proficient at identifying children on the autism spectrum when their differences get in the way of learning to a significant degree.
“But what they’re not as good at doing, and what the tools out there are not as good at picking up on, are children on that milder end of the spectrum who only show some of their differences when the demands of the environment exceed their capabilities,” Monteiro said. “[Corey] is in a category of students that schools miss all the time: High-functioning, smart children who are highly intelligent but socially awkward, do quirky things, and react in intense and inflexible ways to incoming demands.”
Officials at Corey’s school thought he had emotional and behavioral problems and were reluctant to place Corey in a 504 plan. But after Monteiro presented her findings and answered their questions, they granted intervention services for Corey, who remains on Clonidine for his ADHD.
“It wasn’t as if we were battling with them to have accommodations put in place for our son, but it certainly made the whole process much easier,” Ben said.
Referring to the most recent meeting with the IEP team, Ben said, “The reaction I saw around the room from the principals and teachers who were there was almost like, ‘Why is this kid on a 504 plan? Look, his grades are great. He doesn’t get in trouble, doesn’t miss school, and he doesn’t get in fights.’”
Intervention makes a difference
Corey, now 13 and in the seventh grade, is considered a twice-exceptional student with high-functioning autism and a high IQ. He still becomes hyper-focused on things, Ben said, but intervention strategies help.
For example, Monteiro created a “pause button” by folding a piece of paper and drawing two lines on it. When Corey’s parents hand him the pause button instead of asking him to do something, he simply holds the piece of paper to allow his brain the transition time needed to shift his focus and begin processing their request—and not simply react to what they say.
Corey continues to earn good grades and enjoys writing music in his free time, but his relationship with his parents and older sister has improved measurably, as has their relationship with him.
“Once we were able to wrap our arms around what the issue was and what would set him off, it turned our lives around as far as being able to manage him and manage our household,” Ben said. “With this diagnosis, everything in our household has calmed down quite a bit. He feels much better about himself. He’s never done poorly in school, but he seems to have more confidence in himself.”
“Not only has it given him confidence,” Sally added, “but he’s also got a few more tools as far as how to communicate with us to tell us what he needs or what he is experiencing or feeling and why he may not be able to do what we are asking. So we’re able to kind of compromise a little more."
“We understand what he is going through, and he kind of understands us a little bit more, so there’s been more give and take than there has ever been in the past. In the past, he threw huge fits, and it could be ugly, but those ugly situations are very, very few and far between now.”
The actual names of Ben and Sally Tyler and Corey have been withheld to protect the identity of their son. The details of their lives are accurate as reported here. Learn more about the MIGDAS-2 and other autism evaluation measures at WPS.