Tina Webster figured her young son, Stevie, was just experiencing age-appropriate separation anxiety. Her twins had been born premature—“I didn’t have time to be a nervous mom,” she said.
But when Stevie curled up in a fetal position at gymnastics, Webster mentioned it to their pediatrician, who raised the possibility of autism.
So Webster spent the next six months closely watching Stevie, who was nearly three years old. He had some rigidity. He had some temper tantrums. But he also was at that age where such behavior is not that unusual. Still, a routine speech screening at preschool had flagged Stevie and his twin sister for needing speech therapy.
After a developmental pediatrician diagnosed Stevie with level one autism spectrum disorder, Webster was referred to Dr. Marilyn Monteiro, PhD, known for building highly personalized profiles along with customized intervention strategies for individuals on the autism spectrum.
“It was a really good process,” Webster said. “Dr. Monteiro was very detailed in terms of strengths and differences and things I could do, and that was really important to me because you kind of feel like this has all just been dropped on you and it’s very lonely.”
The lonely place Webster experienced after Stevie had been diagnosed with ASD is something Monteiro has seen many times.
“For a typical parent who has a child with differences in development, it’s so confusing to navigate through the process leading up to pursuing a diagnostic evaluation,” Monteiro said. “They will see the child has strengths in some areas, so how do they reconcile that with the fact that the child has reactive, explosive behavior at unpredictable times? What does this really mean? What exactly does it mean when a doctor says that your child is on the autism spectrum? The label oftentimes is unsettling for parents and leaves them conflicted about what fits and doesn’t fit when they read lists of autism spectrum behavior characteristics.”
Searching for answers
Another big struggle many parents experience is trying to decide if their child has oppositional behavior or autism, Monteiro said. Parents often will have multiple professionals evaluate their child.
“Everyone has a different opinion: ‘Yes, it is. No, it isn’t,’” Monteiro said. “So it’s all label-based and incredibly stressful and confusing for families. The profile of their child as a unique individual isn’t captured by labels.”
When Monteiro met Stevie and his twin sister Danielle for the first time, she noticed that Stevie struggled to include a play partner with some sensory toys he was given. He was object-focused rather than people-focused. Both children had social drives, but their autism spectrum brain style differences made it challenging for them to flexibly shift their object-driven focus to include a conversational or play partner. Understanding this duality made sense to Webster and led to the development of practical supports for her twins in the areas of shared conversation and shared play.
Monteiro also noticed that whereas Stevie was introverted, Danielle was extroverted with a lot of energy.
Although Danielle initiated and shared instinctively, she also did not include a play partner, moving on to the next item of interest in a routine manner.
After Monteiro visited their school and observed the children in their classrooms and interviewed their teachers, she was able to build a detailed profile of both children.
By this time, the children were both five, and Monteiro’s work helped Webster obtain the special education services at school that officials had been resisting.
“Having that level of detail along with the long list of strengths and long list of differences, the various steps that she was suggesting for my kids was something that, frankly, I was able to outline and use in preparing my written submission to my school district for our committee meetings,” Webster said. “I also felt like the ‘open-ended-ness’ of her evaluation questionnaires given to the teachers had really given my preschool teachers a lot of latitude to really communicate and not be pigeonholed, because I do think autism is a spectrum and not everyone is going to present in the same way.”
ABA has been ‘life-changing’
Her children, now six, both currently have IEPs in place at school. They continue to participate in Applied Behavior Analysis (ABA) and speech therapy services. Stevie, for example, used to avoid eye contact, but “is now fabulous through all the intervention,” Webster said.
“Even though my [IEP] team of professionals at school weren’t pressing me to do it, I felt like I needed to inquire, and I did enroll them in ABA—and that has been life-changing,” Webster said. “And that wouldn’t have been possible at all without all of Dr. Monteiro’s work and her keen eye and really knowing her field.”
Among Monteiro’s recommendations for the twins:
- Because Stevie consistently followed Danielle’s lead, Webster separated them into different preschool classrooms so he could have the opportunity to use his own social skills and not leverage Danielle’s.
- Because both children organized their behavior around creating and maintaining predictable routines that centered on visual systems, Webster was encouraged to use visual supports when giving verbal directives and to “show while telling.”
- In order to generalize their skills, Webster enrolled them in more activities that allowed both children the opportunity to apply coping skills in different contexts.
- In order to allow Danielle to learn to express and understand her feelings, Webster enrolled her in drama class to work on role playing and modeling.
Monteiro said her approach is to produce a framework of understanding the child in positive terms.
Because each child’s way of organizing is distinctive, the evaluation process is quite detailed. The framework Monteiro uses provides evaluators, teachers, and parents with the language to really talk about how the object-focused brain organizes and regulates.
Differences, not deficits
Rather than saying the children have deficits or there’s something wrong with them, highlighting the form and function of the child’s routines leads to an understanding of the child’s areas of strengths and differences, Monteiro said.
“Children who group objects into lines or categories are using visual, categorical, and three-dimensional thinking. That is the form of the behavior routine,” Monteiro said. “The function of the routine is to organize and regulate the child’s brain, as well as to block out incoming sources of stress. So I use terminology that is purposefully very empowering."
“This positive, descriptive language and framework helps parents move forward and feel like they’ve got a road map, if you will, to really pursue practical supports and interventions for their children as complex and distinctive individuals, rather than struggling with understanding why the child behaves in unusual or unpredictable ways.”
Webster said she is grateful for how far her children have grown in just a few years. The proof is in their own accomplishments. Last month, for example, Stevie was honored with a Global Citizenship Award at school for his model behavior and learning.
“They’re thriving,” Webster said.
The actual names of Tina Webster and her twins have been changed to protect the identity of the children. The details of their lives as reported here are accurate. Dr. Marilyn Monteiro has developed her process into a widely-used and recently updated autism evaluation method, the MIGDAS-2, which was released by WPS on Jan. 25, 2018.