Date Revised: March 24, 2022
Isabella, a teenager in the SPARK autism study, tries hard to keep her emotions under control. She knows strategies to use when she’s stressed. But sometimes she becomes so upset, so quickly, that she has a “meltdown,” an intense burst of emotion that, for her, may involve hitting. “She just goes from zero to sixty so quickly,” her mother says.
Anyone can have trouble managing their emotions, but people who have autism, like Isabella, are more likely to struggle with it. Researchers and psychologists call this “emotion dysregulation.” According to one study, children and teens with autism are four times more likely to have a problem managing their emotions than other youth.1
Behaviors that are fairly common in children with autism, such as tantrums, hitting or injuring themselves or others, yelling, social withdrawal, and even extreme silliness, may stem from a problem with regulating emotions. And this difficulty may affect more than behavior. Some researchers say that emotion dysregulation may be related to the higher rates of anxiety and depression in people who have autism.
“We think emotion dysregulation is the basis of a lot of different emotional challenges that people may experience. It can be the basis of behavior but it also may be the basis of anxiety or depression,” says Amy Keefer, Ph.D., clinical psychologist at the Center for Autism and Related Disorders at Kennedy Krieger Institute in Maryland.
Emotion dysregulation is not a diagnosis, and not everyone with autism has it. But for those that do, problems with managing emotions can dramatically affect their lives, regardless of their age or where they fall along the wide spectrum of autism.1-3
“The Most Capable and Most Disabled Person We Know”
The mother of a 9-year-old with autism says that he has verbal and physical outbursts when he cannot control his emotions. “My husband and I describe him as being at once the most capable and most disabled person we know; he can be the starting pitcher on his little league team without incident, participate and perform in a school-sponsored musical, all while not actually being capable of attending school,” she told researchers.2 Problems managing his emotions “are absolutely his chief obstacle to living a full life and having the chance to enjoy his many talents (and they are many!).”
Many typically developing children learn to manage their emotions by the time they begin elementary school.2 But people on the spectrum may struggle with this skill into adulthood. Autistic adults and teens with this difficulty may dwell on an unhappy incident for days, respond strongly to social rejection, and rely on others to help them calm down, according to an article by autism researchers. About three out of four autistic adults have depression or anxiety, and difficulties with managing emotions are believed to influence these problems.2
Emotion dysregulation may look different in adults. They may seem withdrawn, depressed, or generally exhausted from working to control their emotions all day, said the article’s lead author, Kelly Battle Beck, Ph.D., of the Regulation of Emotion in ASD Adults, Children and Teens (REAACT) Research Program at University of Pittsburgh.
REAACT’s director, Carla A. Mazefsky, Ph.D., discusses emotion regulation on this recorded SPARK webinar. Her research team developed a tool for measuring emotion dysregulation, along with a therapy called the Emotional Awareness and Skills Enhancement program.
Why are Emotions So Challenging in Autism?
People on the spectrum may have trouble recognizing their own emotions, or they may feel emotions more intensely. “There might be some biological differences in the arousal systems in the brain,” Beck says.
Social challenges, sensory sensitivities, and difficulty with change all may increase frustration and stress levels, Beck says. And so does trying to fit into a society that is not attuned to autism, according to the families whom Beck meets. “So it makes sense that you will see more meltdowns or more dysregulation when all of these things combine,” she says.
Do They Have the Skills They Need?
Some psychologists say we should broaden the way we think about meltdowns. “The old school way of thinking was that when a child had a tantrum, parents should respond with a negative consequence,” Keefer says. “There are still times when we need to think about the consequences of tantrums, but what we also have to always think about is: Why is this child having tantrums? Do they have the skills they need to regulate themselves?“
“One of the very first things you need to be able to do to regulate your emotions is recognize they are happening and how intense they are,” Keefer says. “Some individuals with autism have a hard time with that. Some may even have a condition called alexithymia where they are not able to recognize most of the body signals that indicate their emotions.”
Some people do recognize their emotions, but not until they are too intense for them to manage, she says.
Researchers are studying therapies to help people with autism regulate their emotions better. Some therapies use aspects of cognitive behavioral therapy (CBT) or mindfulness. CBT can help someone change their thoughts, and mindfulness often involves self-awareness and relaxation techniques. Both are often used as interventions for anxiety and depression.
Researchers hope that therapies that are being developed for emotion dysregulation may also improve a person’s mental health. “This is why targeting emotion regulation processes is so exciting ─ improving children’s abilities to regulate their emotions can span negative emotions more broadly,” says Jonathan Weiss, Ph.D., a psychology professor at York University in Canada. Weiss has studied a CBT approach to improving emotion regulation in children with autism.
Learning to Recognize Emotional Changes
A therapist may help children learn to recognize the physical signs that they are getting upset, such as their muscles becoming tense and changes in their breathing, explains Keefer, the psychologist at Kennedy Krieger. The goal is to have children notice “little things in their body that are signaling that they are having an emotion right now.”
Children may also be taught ways of coping with their emotions before they lose control. For example, they may go to a quiet place to play with a toy, or if they have language, think about something they could say to themselves to calm down, she says. For example, a boy who is upset about having to put away an incomplete math worksheet could remind himself that he can finish it later. He also could get a drink of water to help distract himself.
Parents can reinforce coping strategies by describing aloud the ways they regulate their own emotions, she says. For example, if a mother spills juice, she can calmly say to her child, “That’s too bad, but it’s OK. I will wipe it up and pour a new glass.”
Isabella, the SPARK participant, began struggling with emotions in early childhood. In elementary school, she injured herself, had meltdowns, and hit other people when stressed. She was placed in a program for children with emotional disturbances at one point, says her mother, Michelle.
After one meltdown in high school, Isabella was physically restrained by school staff, which traumatized her, Michelle says. These episodes decreased as she got older, and she began attending a private special education school.
Isabella, who enjoys drawing and singing, tries to understand her emotions. “She writes me letters while she’s at school to process how she feels. She details events that happened and explains why she did what she did to whomever,” Michelle says. “She is my joy, and does have some tools that help her.”
But she still may hit her mother from time to time, particularly after a frustrating day at school.
“She’s been in counseling and anger management programs for years to help her label and talk about her emotions,” Michelle says. Isabella can “flawlessly” describe the strategies she has learned to calm herself. But when she gets a sudden burst of intense emotion, it can be very difficult for her to prevent a meltdown. “Afterwards, she’s kind of remorseful.”
Keefer says that parents have told her that their children feel sad, guilty, or embarrassed after a meltdown.
“Because they have those negative feelings about themselves, that makes them more likely to have another meltdown,” Keefer says. “So it could be kind of a vicious cycle in that way.”
Interested in joining SPARK? Here’s what you should know.
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