OARacle Newsletter

According to the National Council on Severe Autism, nearly 2.7 million people in the United States are diagnosed with autism spectrum disorder (ASD), with nearly 30% meeting the criteria for profound autism. While the entire spectrum deserves recognition and support, “profound autism” is a term intended to provide clarification about autistic people who require 24/7 care from an adult caregiver throughout their lives. Though defined according to the same ASD diagnostic criteria for persistent deficits in social communication, profound autism also includes severe deficits in adaptive and intellectual functioning.

When compared with children with non-profound autism, children with profound autism are more likely to demonstrate severely dangerous behaviors such as self-injury, aggression, and property destruction. These and similar high-risk behaviors necessitate specialized care and treatment to protect against harm, both for the individual and their immediate circle of support.

If you are the parent of a child with profound autism, you also need increased support to successfully navigate the daily stressors associated with addressing severe behaviors. That support includes specific strategies to help you feel more empowered, especially when it comes to ensuring effective communication with those responsible for your child’s formal behavior plan, like a board-certified behavior analyst, for example.

I.C.A.N. can help you and your child’s designated care providers better understand severe behavior and the steps you can take to improve the quality of your child’s life and your own: 

Be Informed about the Causes of severe behavior. Take Actionable Next steps toward an improved quality of life.

Be Informed About the Causes of Severe Behavior

To effectively address a severe behavior problem, first determine why the behavior is occurring. Severe behaviors stem from either a behavioral or a medical cause. The behavioral category applies when formal assessment outcomes suggest a relationship between an individual’s behavior and their environmental context. The medical model applies when a licensed professional identifies a specific biological or physiological influence on the occurrence of severe behavior, like an ear infection leading to head banging, for example. 

To address severe behavior, parents must first rule out any potential medical conditions by contacting their child’s primary healthcare provider. However, it is important to note that while the root causes may vary, the behaviors themselves are generally understood and addressed as ways to communicate.

Consider a child with minimal vocal language who sees candy in the grocery store checkout aisle and proceeds to scream until their mother purchases the candy. Now consider this same example in terms of communication—the child screaming is saying in the only way they can, “Mom, can I please have some candy?” Another example is a high school student who throws pencils or scratches chairs or desks when asked to complete a math assignment. The student knows that the teacher will give them a timeout. For the student, disruptive behavior is a way to ask for a break, which may be much needed. Both examples highlight the importance of recognizing the potential influence of the environment on the occurrence of severe behavior.

Parents can assess potential causes by identifying what regularly happens in their child’s environment before and after each occurrence of severe behavior:  

• Before (the antecedent): The antecedent is what triggers a specific severe behavior. These are some examples of an antecedent: 

• Wanting to see a preferred person, get a desired item, or do a desired activity 

• Being asked to complete a non-preferred task 

• Biological factors that can make an antecedent more or less likely to trigger severe behavior, physical discomfort, social settings, tiredness, etc. 

• After (the consequence): Anything that results because of the severe behavior, either while it is happening or immediately after, which makes that behavior more likely to occur the next time, such as: 

• Getting what they wanted 

• Being able to leave an activity they didn’t like 

• Having physical discomfort alleviated

This cause-and-effect reinforces the behavior. The longer a severe behavior gets reinforced with the desired result, the more challenging it is to decrease.

Professionals use this timeline as part of a larger process called functional behavior assessment (FBA) to identify what, if any, environmental variables reinforce the behavior. By knowing the “ABCs”—antecedent, behavior, consequence—parents are better positioned to collaborate with their child’s designated care providers.

Identifying the conditions under which behavior is more or less likely to occur (i.e., when behavior is getting reinforced) provides an initial roadmap toward successfully decreasing the behavior. For the child in the grocery store, this may mean something as simple as modifying the antecedent conditions by giving the child candy before entering the grocery store, or teaching another means of communication (e.g., picture exchange) while no longer providing candy contingent on screaming. For the high school student, perhaps identifying ways to make math a more enjoyable experience, while also no longer implementing timeout as the consequence. For both examples, the key to decreasing severe behavior and increasing desired skills is withholding reinforcement when severe behavior occurs and instead providing it when a more appropriate behavior occurs. 

In summary, the primary reason for determining the cause(s) of severe behavior is to determine corresponding prevention strategies. Specifically, strategies that are focused on changing those identified environmental events moving forward to ensure that: 

• Reinforcement is no longer being provided for the occurrence of severe behavior.  

• Functional reinforcers are being provided for the occurrence of more appropriate replacement behaviors that help to support improved independence for both the individual and family. 

Actionable Next Steps

Most parents would say that parenting is difficult even under the best possible circumstances. For parents of children with profound autism, close supervision is required for a lifetime. Under these uniquely heightened conditions of stress and anxiety, parents are not only encouraged to remember their “ABCs,” but also to follow their vowels:  

• A – Acknowledge that parenting is not easy—it makes sense to feel completely overwhelmed. 

• E – Exhale to relieve stress. Taking a deep inhale can be extremely therapeutic. However, when experiencing extreme levels of stress, exhaling may be a more effective first step. 

• I – Identify your child’s ABC timeline.  

• O – Optimize what you have learned. Make sure to share your timeline, as no one knows your child better than you—and now you can rely on the language used by professionals (e.g. “antecedents” and “consequences”) when doing so. 

• U – Understand that behavior change takes time. Don’t forget, behavior is a function of environment, and that environment includes you. 

In conclusion, to effectively address severe behaviors, parents must first understand the root causes of the behavior, then rely on that understanding to help create a supportive environment and in turn, face each new day saying “I C.A.N. do this!” 

Dr. Rachel Taylor has supported individuals diagnosed with neurodevelopmental disorders for nearly 30 years. She is the founder of the Center for Applied Behavior Analysis, which provides ABA services to individuals of all ages across a range of diagnoses. She has held numerous executive-level management positions in behavioral health agencies. She was the founding department chair for the ABA master’s and Ph.D. programs at The Chicago School of Professional Psychology Los Angeles and an associate faculty member in psychology at California State University Los Angeles and Channel Islands.