Imagine you are a preschooler with cerebral palsy, unable to control your muscle movements or communicate with your voice. Imagine that on one particular day, your mother dresses you in your purple scratchy dress, even though you hate purple, you don’t like how it feels, and it makes your legs and feet really, really cold. Since you can’t speak, you can’t let your mother know you are cold, that the dress is scratchy, and that you wanted to wear red overalls. Because you can’t control your movements, you can’t point to what you want, remove clothing you don’t like, or even get a blanket when you are cold.
What would you do if you were this child? Most children in this situation would resort to screaming or flailing—or both. And can we truly blame them? What other options do they have?
This is just one example of a negative behavior in a child with severe disabilities. These children often exhibit distressing or negative behaviors. Because these children are typically unable to communicate verbally due to their disabilities, it may be extremely difficult to determine the cause of the behavior or find effective treatments. As such, many children with severe disabilities do not obtain appropriate behavioral therapy and continue to exhibit negative behaviors.
This article will look at some of the most common negative behaviors that occur in these children, while also suggesting possible causes for many behaviors. While identifying causation and addressing it may not ultimately eliminate the behavior, in many cases it helps tremendously.
Children who are not mobile and unable to communicate verbally often demonstrate different negative behaviors than their typically developing peers. For example, a child with severe cerebral palsy may be unable to run away, hit a sibling, or act aggressively. Instead, he may simply scream, hold his breath, or cry. Regardless of how the behaviors present, children with severe disabilities, especially those with significant intellectual impairments, are more likely than other children to develop behavioral problems.
Negative behaviors in children with severe disabilities fall into several categories. These include:
- Screaming or crying
- Yelling or inappropriate vocalization
- Body movements, such as flailing, rocking, or repeated movements
- Self-injurious behavior, such as biting oneself or hitting oneself
- Generalized irritability
- Shutting down or refusing to engage
- Biting or chewing
- Feeding refusal, spitting, and other feeding-related behaviors
- Vomiting or retching
- Sleep problems
- Uncontrolled sexual behaviors
Behaviors may occur at any age, and may persist well beyond the age a specific behavior is normally expected, especially in children with intellectual impairments.
These behaviors may be extremely distressing to parents, siblings, and the child who exhibits them. They should be evaluated thoroughly, and not simply accepted as the norm in a child with severe disabilities. These symptoms may be a child’s only way to communicate a problem or need, and should never be ignored.
Causes of Negative Behaviors
Children with severe disabilities are very limited in their ability to convey their needs and wants, and may use negative behaviors as a means of communication. Conversely, many negative behaviors may be expressions of pain, discomfort, or other medical issues. It can be exceptionally hard for parents, teachers, and physicians to determine the cause of the negative behavior. Whenever negative behaviors emerge, families and physicians need to remain open-minded about the cause of the problem and thoroughly investigate it.
The following are some of the most common causes of negative behaviors:
Pain and discomfort. It is well known that children with severe disabilities experience more pain than other children, and may perceive stimuli as more painful. Common sources of pain include stomach or gastrointestinal distress, muscle or joint pain, broken bones, or neuropathic pain. Children may also simply be uncomfortable due to environmental factors, including but not limited to the temperature of the room, tightness of clothing, texture of clothing, skin irritation, or an uncomfortable position.
Children in pain typically exhibit symptoms such as screaming, crying, body movements, or irritability. Some children may also develop sleep problems, breath-holding or vomiting.
Many times children who scream constantly or are frequently irritable are diagnosed with descriptive diagnoses such as “neuro-irritability.” At no time should this type of behavior be accepted as the “norm” for children with severe disabilities. The child should be thoroughly evaluated and treated for pain. Many children who scream or are consistently irritable actually are experiencing true pain or neurological events, including autonomic crises.
Frustration. Children who cannot communicate or move often become frustrated when they are unable to do what they want. These children may act out or exhibit negative behaviors in order to get attention, get their needs met, or simply express themselves. While some children may act out, others may disengage or shut down out of frustration.
Inability to Communicate. Children who cannot speak and have limited abilities to move may have no method to communicate. These children may become distraught by their inability to communicate. If they have no method of communication, negative behavior may become their method of communication.
Sensory Problems. Children who have difficulty hearing or seeing may exhibit negative behaviors when they are startled or receive unexpected sensory input. Similarly, some children with severe disabilities may be oversensitive or undersensitive to sensory stimuli, including textures, temperatures, tastes, or sounds. These children may exhibit negative behaviors when they are overstimulated by sensory stimuli.
Attention Seeking. Like all children, most children with severe disabilities seek attention from their families. Since their ability to seek attention may be limited by their disability, many children use negative behaviors as a means of getting attention. Children may scream, yell, vocalize inappropriately, bite, hold their breath, or even vomit simply to get attention.
Stimulation. It is difficult for most children with severe disabilities to explore the world around them, and many crave stimulation, either from sensory input, motion, or affection. Children may display negative behaviors, including chewing, repetitive motions, or sexual exploration in order to provide themselves with stimulation.
Dysautonomia. Many children with severe disabilities suffer from some form of autonomic dysfunction, or the inability to regulate the involuntary functions of their nervous systems. These children may inadvertently enter “flight or fight” mode, leading to many negative behaviors, including irritability, screaming, vomiting, and other symptoms. Some children may have the opposite response, shutting down completely and falling asleep for hours.
Uncontrolled and Repeated Movements. Children with certain conditions may have uncontrollable movements that may cause self-injury or distress. In some cases, children may have no muscle control over these movements, due to either muscle or neurological conditions. In other cases, children intentionally repeat movements such as rocking to stimulate, soothe, or entertain themselves.
Anxiety or Fear. Like frustration, anxiety is a common symptom in children with severe disabilities. Children may be anxious due to repeated medical procedures, or children may be unable to understand what is happening due to intellectual or sensory impairments. These children may act out in a variety of ways, including screaming, shutting down, repeated body movements or self-injurious behaviors, sleep problems, or vomiting.
Psychiatric Conditions. Children with severe disabilities are more prone to psychiatric conditions, which include the entire spectrum of psychiatric disease. Some children may exhibit obsessive traits, such as rubbing, hair-pulling, or repeated scratching. Stereotypic behaviors and movements are quite common. Any and all psychiatric conditions, including autism spectrum disorders, conduct disorders, and other conditions, may be present.
Improving or Eliminating Negative Behaviors
Determining the cause or causes of a negative behavior is essential in eliminating or minimizing it. Simply removing or addressing the cause of the behavior can eliminate a large percentage of negative behaviors.
Pain and discomfort together are the number one cause of negative behavior in children with severe disabilities. Every child should undergo an individualized pain analysis at baseline, and have another pain analysis performed any time new behaviors or symptoms appear. In children with generalized irritability, consider a course of medication with a neuropathic pain medication, such as gabapentin. Also ensure that common causes of pain, such as reflux and constipation, have been eliminated as the cause of the symptom. Consider uncommon causes of pain, including fractures, pancreatitis, gallstones, kidney stones, urinary tract infections, and other potential organic causes when new symptoms appear.
Children who are unable to communicate need to be given the tools to communicate as much as possible. Investigate all potential forms of communication, including nonverbal communication, sign, augmented communication, and vocalization. Giving your child a means to communicate his or her needs may eliminate frustration. It may also help to determine the cause of other negative behaviors.
Children who experience anxiety or fear, as well as children with sensory problems, may benefit from structured therapy to help them deal with the world around them. For example, preparing a child in advance for a medical appointment, placing noise-canceling headphones on a child who can’t handle loud noises, or eliminating certain types of clothing in a child who is oversensitive to textures may completely eliminate negative behaviors. Children who crave attention or sensory input may be able to minimize negative behaviors by being provided with extra sensory experiences or specific types of attention or affection.
Medical conditions such as spasticity, movement disorders, seizures, and autonomic crises can be treated, often eliminating what is perceived as a negative symptom.
In some cases, children may require anti-anxiety or psychiatric medication. The time for psychiatric medication, including anti-anxiety medications such as Valium, is once all other potential causes for behavioral problems have been ruled out. In general, children should also receive appropriate behavioral therapy. While behavioral plans may differ considerably, most will attempt to eliminate negative behaviors by replacing them with new behaviors, eliminating triggering events, reinforcing positive responses, and assisting caregivers in learning how to respond to behaviors.
Taking on the Challenge
Determining and eliminating behavioral problems in children who cannot talk or ambulate can be extremely challenging. Just finding the cause of the behavior can take months or years. Correcting or eliminating the behavior can take even more months or years. Many children, however, have experienced a dramatically improved quality of life as a result of treating underlying issues that trigger negative behaviors.
Take on the challenge, trust your instincts, and improve your child’s life.