Silent Alarms

A commonly quoted statistic is that 93% of communication is non verbal. That 55% is body language and 38% is tone of voice. (Thompson, 2011). When supporting individuals with neurodivergence or developmental disabilities, this common ratio can change. Those who struggle with self-regulation, expressive communication, anxiety or any other cognitive process, will often exhibit changes in their body language and physical behaviour that can signal a chang in their emotions or as a precursor to something bigger.

Here is my example:

I support two individuals, a brother and sister, both adults with developmental disabilities. I have been meeting with them virtually, via ZOOM, over the phone and through text for about 4 months now.

Let me start... this story by telling you that they are two of the sweetest and most charming individuals I have ever had the pleasure of supporting. That being said, the brother, Samuel* (name’s changed for privacy) gets very anxious when meeting new people. There was a meeting today at the family’s apartment to meet with a potential respite worker. I knew that this would cause a lot of anxiety, and that is the reason that I participated, in person. This is only the second time that I have physically met with this family, and the first time was 15 minutes in the lobby of their apartments to sign some paperwork.

When the respite worker and I arrived, we were buzzed in and the sister, Sue* invited us into the apartment. Samuel was in his bedroom at the time. As the meeting progressed, I texted Samuel asking if he was going to join us and he responded “NO”. When I asked why he responded “I don’t like her”. Now remember, Samuel has never met this person, or even spoken to this person. When I pressed as to “why” he didn’t like her, he began shouting, swearing, and stormed out of the apartment. I followed him into the hall to try to de-escalate. He continued to swear, and even threatened to phone the police. I simply responded calmly and told him “I can see that you are very upset, and I would like to help you”. He responded with “just leave me alone” as he pressed the elevator call button. I asked if he would like me to text him when we left and he said "no". So I said “alright, that’s fine” and let him go.

I returned to the apartment where Sue was now crying. Sue has been taking care of Samuel for several years, and is his primary caregiver as well as social circle. She takes the weight of his outbursts very personally, often expressing that she feels like a terrible sister.

After some reassurance and positive talk, and some good old fashioned hugging, she was ready to resume the meeting. We laughed, we joked and we made plans to help her to bring some joy back into her life.

Approximately 15-20 minutes later Samuel returned. He parked his wheelchair just around the corner out of sight. He asked his sister to ask if I might help him make a phone call. I offered for us to go into a separate room for this and when we got there he looked at me and said “i’m sorry”. This individual went from screaming and swearing to “i’m sorry” in what I would say is a very short amount of time. He seemed relieved when my response to his apology was “I’m glad you’re feeling better” and “we’re cool?”. I asked if he wanted to join the conversation with the worker, and I saw a brief moment of tightness in his face.

I offered to sit beside him, and he assured me that “you can sit on the couch, it’s ok”.

So we both joined the meeting. He answered some questions, and engaged with the new person.

After about 20 minutes, the actual meeting part had finished, and we were just

socializing and building rapport. At this time, I noticed Samuel begin to pull on his fingers, rub his knuckles and the back of his neck, turn his body toward his sister and look anywhere except at me or the new person.

I walked over to him and quietly said “you’ve reached your threshold haven’t you? You’re at your limit.”

Samuel let out a sigh and looked into my eyes and said “you’re a special person”.

I turned to the group and said “I think we;ve taken up enough time, why don’t we head out and let you two get back to your day”.

The worker and I said our goodbyes and left.

As we walked out the worker asked “how did you know? How did you know that he was done?”

To me, the sudden change in his engagement and the onset of anxious behaviours, like pulling on fingers and avoiding eye contact were glaringly obvious. To others, not so much. I explained to her what I saw and how I addressed it so that she might be able to look for these signs in the future.

That is a long story, but the piece I wanted to focus on is the ending, where I asked if he had reached his limit, and his response.

When supporting individuals with developmental disabilities, who may struggle with self-regulation, communication or a myriad of other behavioural difficulties it is vital to be able to see everything that is happening, even when you aren’t looking for it. I was sitting in a living room enjoying some banter and conversation, but I was still able to see the subtle shift in Samuel’s behaviour that announced that he was getting anxious.

The concept of “the behaviour came out of nowhere” is ignorant at best. All behaviour comes from somewhere, but not everyone can see it as plainly as I can. In this story, this is the second time that I have ever met this person in real life, and the longest time that I have ever tried to engage them.

The point of this story is if I had not “noticed” these small behaviours, I would find myself faced with a large behaviour that “came out of nowhere”. The devil is in the details. It’s noticing the little things. The change in voice tone or volume, movements on the hands and body language. These speak volumes to the way an individual is feeling at any given moment. If we are able to hone in on these little things, and be proactive, the bigger behaviours can not only be prevented or avoided, but we can build a better relationship with the client as they come to realise that you are actually paying attention to them.

Samuel sighed, looked me straight in the eyes and told me “you are a special person” and while I am inclined to agree upon reflection it feels like no one has ever taken notice of him enough to see the little things that lead to big things. Others haven’t seen the pulling on his fingers or fidgeting and thought “I think I am making him anxious, maybe I should ask how to support him?” The small sigh when I asked if he was at his limit makes me believe that for the first time in a very long time he felt seen and understood.

Not everyone can see everything. And it can be very difficult when you are looking at the big picture, but when working with individuals with developmental disabilities, shouldn’t they be the big picture? Should they not be the focus of your attention? Not the paperwork, or the goals, or the task at hand, but their thoughts, feelings and overall well being?

Take some time to look and notice the little things that your child or client does and ask yourself: what is this behaviour communicating to me? It might be a whisper at first, but over time you will find that it becomes louder and louder until pulling on their fingers becomes a siren that you need to step in to respond to the communication.

References:

Thompson, J. (2011). Is nonverbal communication a numbers game? Psychology Today. Retrieved April 15, 2022, from https://www.psychologytoday.com/ca/blog/beyond-words/201109/is-nonverbal-communication-numbers-game