April is Autism Awareness Month, but we should draw attention to autism every day. One way to do so is to hear from the many brave people out there making a difference in the lives of young people with autism and in the growing field of autism research. Kim Ceccarelli is one of those people.
A behavioral coordinator and crisis specialist at the Northshore Education Consortium in Beverly, Mass., Ceccarelli has worked in the autism field for 25 years. “My work involves providing safe, effective behavior management—including de-escalation strategies and behavior intervention—for about 25 students who have autism and fall within the ‘severe’ category,” she told me recently at an in service I gave about “The Behavior Code: Understanding and Teaching the Most Challenging Students.”
The students Ceccarelli work with range from 7 to 21 years old, and many are completely nonverbal. “What they all share, unfortunately, is an established pattern of avoidance behavior in response to fear,” she said.
“Parents of children with severe autism most likely already know what it took me years to figure out,” said Ceccarelli. “Each child is unique and often very bright, even if considered nonverbal, but they wind up engaging in challenging behavior out of sheer frustration due to having a lot to say—but no voice.” When I teach about how to manage challenging behavior in the classroom, staff sometimes can struggle with grasping the idea that behavior is communication. There is no clearer example than with children who don’t speak. Their only way to communicate is by their behavior. By necessity, caring adults need to become detectives, analyzing what is taking place before the behavior (whether crying, screaming, biting, kicking, or running from the classroom) and how the environment either reinforces the behavior or helps to change it.
Twelve years ago, something clicked with Ceccarelli. She started noticing “growing patterns of remorse” from students after behavioral incidents. “My clients would go to great lengths to say sorry to a staff member that they’d targeted during a meltdown,” she recalled.
If a staffer had been hurt by a student’s aggression, for example, the student might try to rub the injury site with their shirt. “This made me realize that none of these students wanted to act that way,” she said. “I started questioning how much control these students had of what their bodies were doing in a meltdown, and that made me assess the students’ reactive behavior from a slightly different perspective.”
Ceccarelli began analyzing what triggers prompted meltdowns and what could be eliminated at the onset of a meltdown. She also considered what action the student could be prompted to perform that was incompatible with the trigger. There is an art to figuring this out. Parents of toddlers discover this easily, say, if their child is banging her head in frustration because she doesn’t have the skill to negotiate in words what she needs. A parent of a typically-developing child may ask their child to do Simon Says or to punch a pillow instead. But that may not work for an autistic child.
“I still remember one 20-year-old student who’d lose control of his body, flailing forcefully when upset, until finally he’d slam his head into a wall—almost as if that was the only way to stop the episode or get relief,” she said. “At the onset, we began prompting him to sit and put beads on a pipe cleaner with his forearms resting on the table. Having his forearms on the table was incompatible with the flailing. Other students just needed to learn one word—wait—when in a crowded hallway to replace body-slamming walls. These are small interventions but they made a huge difference.”
Ceccarelli is adamant that students prone to meltdowns do not want the meltdown. Although frequently students’ challenging behavior can be misinterpreted as “manipulative” or “controlling”, this view overlooks the fact that kids do well if they can. If a child has a low frustration tolerance, then we want to find a replacement behavior to prevent them from throwing a chair or running out of the room, while at the same time intensifying our work in teaching them the skills they need to help them avoid reaching the point of a meltdown.
“Each student, when taught a replacement behavior, will opt for the replacement and not engage in challenging behavior,” she said. “Every student who has learned a replacement appears grateful. If you are a parent reading this, please don't ever let an educational setting say ‘This is as far as we can go because he/she has severe challenges.’ There are always exceptions, but what this phrase means to me is that the professionals within the educational facility may have plateaued—not your child. Your child is still waiting for someone to figure out what he or she needs.”
Describing her work as complex yet extremely rewarding, Ceccarelli relishes making positive connections with students, and when “the student not only trusts me, but recognizes who I am and seeks me out. That is when I know I’ve accomplished my part of the job.”
Here are her learning points for parents of children with autism:
They are very bright and receptively understand much of what is being said to and about them.
Frustration is common due to communication deficits which impede an autistic person’s responding within our time frames.
They have future and past thoughts they would like to express or have validated by adults.
They may refuse to use an accessible communication system (chosen by someone other than themselves) and engage in challenging behavior, but when offered the use of a different, preferred system (even if not the most universal), they will use the system instead of engaging in combative behavior.
They can develop associative patterns very quickly (including whether or not they like you) in just two encounters, and whatever they decide can stick.
They don’t always respond positively or with compliance to typical behavioral-contingency token programs.
They can do extremely well and lose a secondary diagnosis of anxiety disorder when treated like typical adults (with extra time before demands are provided and with controlled choice-based options on their timetable).
They can learn and be taught critical replacement behaviors at any age.
They need assistance and direct facilitation in slowing down or stopping time when a student is learning new skills to unexpected problems.
They do demonstrate empathy and remorse.
Ten hours of sleep is required to demonstrate any level of resilience.
Ideally, every child with autism would have a teacher who is responsive, creative and seasoned. Kim Ceccarelli’s wisdom and practical tips remind us of the hard work, dedication and resourcefulness required to help children with challenging behavior thrive, and help teachers work more effectively with these students.
Nancy Rappaport is associate professor of psychiatry at Harvard Medical School.