If you’re a parent of a child with autism, it’s possible you’re wondering how to deal with a range of behavior challenges. These could look like your child screaming if they can’t wear their favorite shoes or fearing the toilet, the supermarket or the dentist. These behaviors of autism, while challenging, are your child’s way of expressing how they feel and what they need — and it’s important to keep this in mind.
“Challenging behavior occurs in nearly all child populations, and is not a core component of autism,” says Matthew Edelstein, a clinical psychologist and board-certified behavior analyst at the Behavior Management Clinic in the Department of Behavioral Psychology at Kennedy Krieger Institute in Baltimore. “That said, caregivers of children with autism often report feeling a great deal of stress over their child’s care. Parenting a child with autism is often unlike what caregivers might expect — autistic children may express their love and attachment to their parents differently, and they may engage in difficult behavior when they become frustrated or upset.”
However, Edelstein adds, “behavior is communication,” and it’s important for parents to understand the “why” behind challenging behaviors of autism. Below, Edelstein and other experts weigh in on common behavior challenges that often accompany autism and how to better support.
1. Serious sleep problems
Studies have shown that sleep problems — from night waking to difficulty falling asleep — are nearly twice as common in kids with autism than in the neurotypical population. “Sleep issues [in kids with autism] are a very, very common concern that affects whole family and their health,” says Jenny Root, a board-certified behavior analyst and associate professor of Special Education in the School of Teacher Education at Florida State University.
Katie Crosby, OTR/L, a pediatric occupational therapist in Chicago, explains that given their differences in perception capacity — meaning they’re able to process more information at once than their peers — children with autism may have challenges with reacting to various sensory stimuli throughout the day, impacting the ability to regulate sleep/wake cycles and gain a restful night’s sleep.
Some research has pointed to mutations in genes that govern the sleep-wake cycle, while others suggest that people on the spectrum carry mutations that affect levels of melatonin, a hormone that controls sleep.
What parents can do: Edelstein and Root advise parents to establish healthy sleep habits, which may include:
- Setting regular bed/wake times (even on the weekends).
- Limiting screen use 1-2 hours before bed.
- Minimizing high-energy activities before lights out.
- Reducing snacks prior to bedtime.
- Keeping sleep settings cool and free from extraneous light.
- Offering a “heads up” that bedtime is coming about 1 hour before bed.
- Offering a visual checklist of bedtime routine steps (bathing, brushing, etc.), so they’re self-monitoring.
2. Meltdowns or tantrums
“In general, children who have difficulty communicating their wants and needs are more prone to tantrums and outbursts,” Edelstein notes. “As communication difficulties often coincide with an autism diagnosis, there is overlap between behavior difficulties and autism.” In other words: Working on communication is key.
Crosby suggests that parents and caregivers read a neurotypical child’s cues and signals and respond in a way that acknowledges how the child is feeling and teaches them how to regulate emotion. For instance, if a family is about to leave home on a rushed morning and the child is running away, we can assume the child isn’t thrilled with the idea of going to school. But children who have autism might have more subtle cues, which can create a disconnect with a caregiver.
“This leads to frustration with misattunement and reactivity, impulsivity and difficulty working through emotions,” Crosby says.
“I wouldn’t say children with autism are more likely to have meltdowns, but instead are more likely to have difficulties in communication or transitioning between activities,” adds Emily Newton, a clinical psychologist and board certified behavior analyst at Springtide Child Development, a center that supports children with autism in Connecticut and Massachusetts. “Depending on their coping skills, this may lead to a meltdown or tantrum.”
What parents can do: Working on communication skills is integral to preempting or minimizing situations that could lead to a meltdown, as are a number of other techniques. Here are a few things Newton, Edelstein and Root suggest:
- Using clear, concise language. (“First I’m getting the apples and milk, then we can get you a cookie.”)
- Determining if it’s something you need to ride out (“Once you’ve hit the peak, you just need to wait for them to come down,” Root says.).
- Recognizing and limiting triggering events.
- Creating consistent expectations across contexts.
- Communicating routine changes.
- Using strategies like visual timers, which can help aid transitions.
- Providing choices.
“Caregivers may be inclined to manage challenging behavior in the moment by changing their expectations or ‘giving in’ to their child to ‘turn off’ the outburst,” says Edelstein. “However, this is typically a short term solution that creates a longer term problem. Fortunately, trained behavior experts are experts at working with families to create short- and long-term solutions.”
Parent pro-tip: Lenore Koppelman, a New York mom of a 9-year-old boy named Ralph who has autism, says she has found that the best way to help her son through a meltdown “is to encourage him to embrace his feelings.”
“If we tell him to ‘calm down’ or to ‘stop being upset,’ that only makes things worse,” Koppelman says. “It belittles how upset he feels. Ralph is fully entitled to his feelings, and while his meltdowns might make others uncomfortable, we decided to care more about what he feels and what he needs than the comfort of total strangers all around him.”
Koppelman has found that by encouraging her son to “roar out his frustration and pain like a little lion cub in a vocal way,” he’s able to work through it more quickly than if his feelings had been repressed. Once he has “let it all out, he begins to feel calmer,” she says.
3. Hyperactivity and impulsivity
There are few reasons kids with autism may have hyperactive or impulsive tendencies, including highly active nervous systems, the large overlap of autism and ADHD and difficulty managing behavior in a variety of settings.
“As children learn to navigate the expectations in their environments, there are often times when behavior choices can inadvertently become disruptive,” says Edelstein. “For instance, children with high activity levels can function extremely well on the playground and less so in the classroom. Children with autism may be at a disadvantage when switching contexts due to some of the social impairments inherent in the condition. In other words, social deficits might make it hard for a child to ‘tune in’ to when expectations on their behavior change due to a change in environment.”
What parents can do: Again, communication is key here. Here are a few suggestions from Edelstein, Root and Newton:
- Reinforcing safe choice behaviors, such as holding hands when crossing the street.
- Providing reminders of expected behaviors.
- Making sure they get exercise. “Getting your heart heart rate up for sustained time improves impulsivity and hyperactivity,” says Root.
- Meditation, guiding thinking and breathing can help with self-regulation, according to Root.
- Giving visual reminders. “Caregivers understandably wouldn’t want to punish their child’s activity level in the right context, so it can be hard to establish clear rules about behavior expectations,” says Edelstein. “Instead, using visuals, like a stop sign, can help children know which behaviors are appropriate in which settings can help make those expectations clear.
4. Anxiety
Just like a neurotypical child, a child with autism will experience anxiety during times of change. Koppelman has experienced this with her son.
“Ralph seems to feel most comfortable when he knows what is going to happen before it happens,” she says. “He doesn’t like surprises.”
He might be looking forward to going to his favorite restaurant but find out that it’s closed, or believe a friend is coming over to play but then learn they can’t make it, she says.
“These sorts of situations can lead to an autistic meltdown, which is completely normal and common and not a sign of being spoiled or bratty or of weakness,” Koppelman says.
What parents can do: Routine, communication and structure are all important, note Newton, Edelstein and Root, who recommend the following anxiety-busting tips:
- Providing clear expectations of the situation that is making the child feel anxious. “Give them details of what they can expect and what they will be asked to do in those moments,” says Newton.
- Practicing ahead of time. “If you can practice ahead of time, this will help to make your child feel better as well as you,” says Newton. “Then after the situation has occurred, remember to reinforce your child and praise them. Even if it didn’t go perfectly, it is important to recognize that they tried.”
- Minimizing avoidance of scary but safe situations.
- Creating as consistent and predictable environments as is practically possible.
- Modeling calm and regulated behavior when things do not go as planned.
- Teaching awareness of emotions and feelings. “Help them gain awareness of states,” says Root, “and that no emotions are bad.” Doing this, she says, helps gives kids the tools to regulate themselves when they feel bad or good.
Parent pro-tip: Koppelman leans on visuals that she calls “social stories” to prepare Ralph for any given situation, and she says it’s her most powerful tool for helping her son cope in these situations.
“Some social stories are drawn like a comic strip,” she says. “Others are in a video format. For example, if either my husband or I will be away for a business trip, we will create a little booklet with photos in it explaining that this is about to happen. You can create a story like this about literally anything — going to the dentist, going on a trip, going to a birthday party, going to a new supermarket you haven’t taken them to before.”
5. Repetitive behaviors
Referred to as “stimming” — or self-stimulating — these self-soothing, repetitive behaviors of autism (such has rocking, hand flapping or making a repetitive noise) are “among the core characteristics of autism,” says Edelstein. However, he notes “not all of these behaviors warrant intervention.”
“In fact, many individuals with autism report that stimming behaviors feel good and are enjoyable,” he continues. “As a result, careful consideration should be made as to whether a specific behavior is interfering with the child’s functioning. For instance, if stimming behavior becomes harmful because it causes bodily injury, then it would certainly be important to change. However, if stimming behavior is just a part of who the child is, then a caregiver can be most helpful by helping them identify when it is safe to engage in those behaviors and when it is best to hold off until later.”
What parents can do: “Stimming or repetitive behaviors occur because of the sensory input the child is getting from the behavior,” says Newton. “For example, jumping gives sensory input to the child’s feet and legs. If a child is choosing an unsafe behavior, parents can help by finding alternative activities that give the same response, such as chewing on a chewing necklace versus items that are unsafe. Working with an occupational therapist can be very helpful in this area as well.”
Parent pro-tip: Koppelman says she encourages her son to stim.
“It is his coping mechanism to monitor his sensory input and output and to help him feel better in the world around him,” she says. “Sitting still makes it more difficult for them to process information and to learn to their fullest capacity.”
It’s for this reason that she encourages parents to let children spin in circles when they need to, rock back and forth, walk around a space like a classroom or use soothing sensory toys to touch and gaze into.
6. Feeding difficulties and food sensitivities
Almost “as common as sleep disturbances,” says Root, “a lot of food issues come down to a child with autism’s preference for sameness.”
“Food selectivity or challenging behavior during mealtimes is a frequently reported problem for many types of families,” adds Edelstein. “While there are some simple strategies that can be quite impactful in this area, it is important that caregivers first consult with medical professionals to ensure there are no physiological issues at play, such as difficulties swallowing or dangerously low weight.”
What parents can do: Once you rule out there aren’t any physiological issues, Root, Edelstein and Newton suggest the following:
- Keeping things low pressure (don’t force anything).
- Putting a new food on their plate (next to one they already know) and don’t say anything, which could result in a power struggle.
- Encouraging the child to smell or touch the new food.
- Involving kids in cooking.
- Sticking to a routine, including regular mealtimes and clear expectations.
The bottom line
While addressing your autistic child’s behavior is important, keep in mind, the first thing to do is reframe how you think of the behavior, says Root, who notes that the language you use is step number one. “Think about how you describe the behavior,” she says. “Maybe change ‘they’re having a meltdown’ to ‘they feel things really intensely.'”
Also, Root adds, consider what behaviors of autism to address and change and what to let go of. “When you think of what you want to change, ask yourself: Is it harmful to themselves or others?” she says. “If so, figure out if you can teach a replacement behavior, a different skill that serves the same purpose.”
Newton adds: “The most common reason I see children engaging in challenging behaviors is because they want to communicate something and then don’t have another way to do so or other ways are too difficult,” she says. “Those challenging behaviors may be communicating they are hungry, tired, scared or frustrated. Imagine if you suddenly ended up in Japan and didn’t speak or understand Japanese. If you needed food or if you felt ill and needed a doctor, you would try any means possible to get what you need.”
