First-Hand Insights into Developmental Disabilities and Growth

I strongly believe that when working with individuals who are developmentally disabled, having a positive outlook is one of the biggest tools you can have. When staff become frustrated, worn down, or burnt out, they may begin to think that individuals engage in challenging behavior because they “just want to do the wrong thing.” However, it’s far more likely that the individual simply doesn’t know the right thing to do, or doesn’t know that there are alternatives available.

Back before my career as a Global Professional Instructor with CPI, I worked as a crisis interventionist and in-home service provider for individuals with developmental disabilities. The focus of my work was to teach positive alternatives to the individuals in my care. Since this is National Developmental Disabilities Awareness Month, I wanted to share some of the experiences I’ve had with implementing plans and programs to help the individuals I worked with and their families.

One particular experience stands out above the others.

Working with Edward
Edward, whose name I’ve changed for the purpose of confidentiality, was 15 years old when I began working with him. He and his family had been in a state of crisis in their home for several months. Especially since entering adolescence, Edward had begun to engage in more aggressive behaviors, and the amount of risk presented by this behavior had been increasing significantly with the strength he was gaining as he grew. In one extreme instance, Edward bit his mother and broke her finger at the thumb joint. Needless to say, fear and anxiety were almost constant factors for Edward’s family.

There was also an additional challenge in working with and understanding Edward: He was nonverbal. Even simple needs like hunger, fatigue, and his emotions were difficult for him to fully express. Indeed, for many individuals with developmental disabilities, communication can be a challenge. They may be verbal, nonverbal, or anywhere in between. Many of these individuals often feel great anxiety and frustration with the difficulty of expressing themselves. This can be further compounded when those they communicate with display a lack of understanding. Put this all together, and an individual may exhibit even more anxiety and more challenging behavior. 

To help Edward with these factors, I was a part of a team that included Edward’s parents and family, a behavior analyst, his school teachers, and three other Care Team Members who were all directly implementing the programs we designed to address his challenging behaviors.

We had three goals:

1. Reduce aggression. While aggression was not the only difficult behavior that Edward engaged in, reducing it was his family’s first and primary goal for safety reasons.
2. Increase communication. We needed to link Edward up with skills for expressive communication. 
3. Teaching new skills. We also needed to create positive behavioral changes to help Edward increase his own quality of life. The focus here was on teaching and reinforcing new skills. These skills could range from emotional awareness and recognition, to teaching him how to help with chores and work around the house. 

Having a positive attitude was central to meeting these goals.

In a perfect world, maintaining a positive attitude and teaching new skills would be a seamless and straightforward process. However, as many of you know from experience, there can be great difficulties and challenges in creating positive behavioral changes—especially when there are moments of crisis and aggression.

Handling Aggression
Edward’s aggressive behaviors were not just targeted toward his family, but sometimes toward us as staff as well.

One such instance occurred early on in our work with Edward. The day began as a typical, regularly scheduled in-home visit. After about 30 minutes, Edward began to engage in some anxiety and defensive behaviors, including increased distractibility, more frequent self-stimulatory behaviors (hand flapping, echolalia, and tapping his palm to his stomach), and ignoring or refusing directives. He also began to walk away from or leave the work area.

I took these as opportunities to redirect him back to the task through the use of a First–Then visual board. However, after several instances of redirection, Edward began to escalate to more physically aggressive behavior. He displayed an angry facial expression and began to reach out in an attempt to grab or pinch at my arms. Then he tried to bite my arms and hands. All of this started happening in a matter of seconds. 

As you’d expect, I began to experience my own anxiety.

However, because of my training and the specific plan that my supervisor and I had discussed in advance, I was able to manage my anxiety and the situation.

Despite the fact that Edward was physically aggressing, I didn’t have the option to hold or restrain him, as I was the only one in the home (only one Care Team Member was ever present on a given day in Edward’s home).

Edward was strong and, when attacking, even stronger. The risks for both of us were high. 
Thus, we had to explore other options. First I used disengagement skills to keep myself safe, blocking and moving away from Edward’s strikes and grabs and using the layout of the room and the furniture to keep distance between us.

We had also developed a plan of visual redirection. Many individuals with developmental disabilities have varying levels of verbal receptive communication skills. Furthermore, verbal processing skills for anyone—developmental disability or not—decrease as their emotional state increases. Therefore, trying to verbally redirect Edward would rarely, if ever, work in a moment like this of heightened stress and emotion.

But our team had created a visual board of choices and images that Edward could use to communicate by selecting one and exchanging it with the staff working with him. We designed this to interrupt or distract him from his current behavior, while also providing him with an “out,” or an option for alternative communication. This picture exchange was also the primary means of communication he used throughout his day. 

(We also made sure to avoid reinforcing undesirable behaviors. It can seem like a good idea in the moment to allow an individual to escape the situation or to provide a reward for them to “stop the behavior from happening.” Unfortunately, this often leads to reinforcement of the behavior—it will actually make the person more likely to use the behavior again, as they learn that it allowed them to get what they wanted. It can seem frightening or counter-intuitive, but in the long run, working through the behavior is often where we can see the most benefit or growth.)

After about 30 seconds to a minute of aggression (time perceptions always seemed to shift for me during those high emotional states!), Edward was highly tearful but began to use the communication tool I offered him. He selected to use the bathroom. He exchanged the icon for “Bathroom” with me and I placed it on his First–Then visual board to set up the order of “First, bathroom and then, work.”

His anger and frustration began to subside, and our opportunity to build therapeutic rapport was almost upon us.

Upon appropriate use of his communication, Edward returned to the work area, where he took a few deep breaths, and eventually he successfully worked through the task in order to receive the reinforcement toward which he had been working. 

The end result:
The aggressive behavior did not allow Edward access to what he wanted but instead, the situation was safely managed, he used appropriate communication skills, and we were able to get back to the original task in a timely manner. 

After the crisis, as he became calmer and his receptive language skills returned to him, I spoke with him about a plan for next time, reminding him of his communication tools and how to appropriately ask for help or request a break. He let me know he understood by giving me a fist bump.

So what makes crisis responses like these possible?
The answer can be quite complex. But to begin, I believe that three basic facts about human behavior can go a long way when you’re working with individuals with developmental disabilities:

1. Behavior is a form of communication.
2. For individuals with a communication barrier or delay, behavior may become their primary form of communication.
3. People engage in behavior if it works for them—whether it’s challenging behavior or otherwise.

So to really work with Edward, our team needed to begin by attempting to understand what it was that he was trying to communicate to us. We also needed to ask ourselves, “What is the function of his behavior?” 

All behavior has a function—even behaviors that cause more anxiety to respond to or seem more “bizarre.” And if we know the function of a behavior, we can implement PBIS strategies to teach positive functional alternatives. And it’s from here that we can create plans in advance, to safely and appropriately prevent a crisis or intervene when one does occur.

It’s equally, if not more important, to empathize with or understand the individual.
In my experience, this can be one of the biggest challenges for staff members. Due to differences in cognitive processing and challenges with emotional expression and communication, truly understanding or empathizing can be difficult. But, if you work to better understand how an individual with a developmental disability perceives and experiences the world, you may be able to overcome some of that difficulty. And helping the individual learn to communicate in a way that’s effective for and meaningful to them can be an invaluable way to gain insight into and understanding of that person.

Getting first-hand accounts of what life could be like for an individual with a developmental disability is valuable too.
For example, there are lots of tools that offer simulations of what sensory hypersensitivity might be like for an individual with a developmental disability. Each of these video simulations was created by an individual on the autism spectrum. 

Another great reference is a book written by Naoki Higashida, a nonverbal individual with a developmental disability, titled The Reason I Jump. In it, Naoki responds to common questions people ask individuals with developmental disabilities, providing a very unique and valuable insight into his state of mind, the way he perceives the world, and the way he processes information. 

Listening to presentations and speeches from individuals with developmental disabilities can also provide a wealth of valuable information. Such speakers include Temple Grandin, Sue Rubin, and Carly Fleischmann. Each offers their own unique and different perspectives on their perceptions of the world.

“If you’ve met one person with autism, you’ve met one person with autism.”
While gaining insights such as these can be highly valuable, it’s also important to recognize how unique each person really is. One big phrase in the autism community is “If you’ve met one person with autism, you’ve met one person with autism.”

This statement rather accurately highlights how each person is different. In every case, and for every individual, we really must learn more about them, their perception of the world, their likes, their dislikes, their feelings and emotions, the way they think . . . and this list could go on and on. Because it is with this information that we can learn where each individual wants their life to go, and how we can be a means of support to help them get there.

Through training, education, communication, genuine empathy, and person-centered, positive staff approaches, we can be the catalyst to assist each person to lead a meaningful and fulfilling life.