Respect Resistance: Mitigate Meltdowns in Special Needs Individuals
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One afternoon at a residence for special needs adults, G, a typically jovial adult with Down syndrome, erupted in a meltdown that lasted an hour. It would take four employees pinning him down to administer two doses of a sedative after significant commotion of screams, shouts, shoves, and shattering of plates.
All I could think of, in my constrained capacity as a one-on-one volunteer assigned to R, a deaf adult with Down syndrome and profound autism, was how avoidable it could have been.
So what happened?
It was near the end of the pastry session: we had to prepare 50 chocolate coconut balls that would be served to the entire residence, as was the weekly routine. Toward the end of the session, with the residents struggling to execute the fine motor motions to shape the balls, J, the employee-in-charge, told them to go for their break, leaving her free to meet the quota instead of having to tend to them.
But G wouldn't leave, insisting on shaping the balls. Because R and I had finished our batch, which meant that I could escort R to the toilet to urinate and leave him there for some sensory respite, I could help make the balls. Therefore, from my perspective, this could free up J to focus on G and work on the balls more slowly.
Yet J kept insisting that G leave for his break. What I didn't know was that her strong façade of insistence was masking her panic about G's non-compliance. She had decided that it was a harbinger of trouble to come. So when M, another employee, came into the room, J told her that G had failed to comply with her instruction to go for the break, and it had been going on for the past 15 minutes. Without skipping a beat, M scolded G for his disobedience and grabbed him roughly by his arm to pull him into the kitchen, ignoring his protests.
Through the walls, I could hear the voices growing louder and fiercer, with M's harangues unleashing G's shouts. I asked J, "What's the problem?" Though her eyes looked frightened, she explained as a matter of fact, "He wouldn't go for the break like everyone else. He wouldn't do what I told him to do. He should be following rules." It was like, "That's how we do things here. He's supposed to listen and follow."
I raised my eyebrows, but I didn't say anything; after all, I was just a volunteer with no right to intervene. Yet, somehow, J's explanation did not compensate for the escalating crisis in the kitchen. Essentially, she wasn't accustomed to his non-compliance, which she feared could be a precursor to a meltdown. But instead of treading carefully and flexibly, she doubled down on the institution's expectation of compliance as a rule or the residents could be punished. Her colleague M then added fuel to the fire by enforcing it.
Like a self-fulfilling prophecy, the situation J had feared blew out of all proportions. Not only was a meltdown not averted, it was so much worse than they could have imagined. Over what would turn out to be the next hour, as many as five employees were in the kitchen, shouting and grabbing G, ultimately pinning him on the ground to administer a chemical solution.
Through it all, as I maintained my composure for the resident I was supporting and the others who had been corralled into another room, away from the commotion, all I could think of was: "None of this should've happened." Though I wasn't surprised that their intervention had ended badly, I was still shocked by what had transpired.
Worst of all, after an internal "investigation", it was concluded that G was in the wrong. Despite my written report presenting what I had observed and analyzed based on my knowledge and experience, the manager-in-charge insisted that the organization's approach was correct: "In a residence like this with 30 adults of diverse special needs, such behavior is not allowed, or things will get just out of hand."
Control, not relationship, was the priority.
In the special needs world, "compliance" is highly prized. It is often associated with "progress" — the ability and willingness of special needs individuals to do what their caregivers (family and professional) expect or desire. Conversely, their displays of resistance are perceived as "regression", always a problem behavior that needs to be eradicated.
Underlying this unquestioned worldview lie multiple unexamined assumptions that often lead to the sowing of the seeds of tension between special needs individuals and their caregivers. This tension, years in the making, simmering out of sight, becomes recurrent meltdowns that take us by surprise once special needs individuals reach adolescence and adulthood.
This tension, years in the making, simmering out of sight, becomes recurrent meltdowns that take us by surprise once special needs individuals reach adolescence and adulthood.
Parents and educators often lament how the special needs individuals under their care have "regressed" after being "trained" so well to comply. What we often fail to see is that our assumption that special needs individuals should just obey us because we know better smacks of utter disrespect for their own desires. There is an unquestioned inequality in the relationship, cloaked by positive intentions, which can lead to a blatant abuse of power and authority — an oppression that is the very antithesis of what caregiving support is all about.
The thing is, we caregivers, who can only judge progress based on the achievement of milestones in a typical life, need to learn how to suspend our need to impose. We need to step back and give special needs individuals the room to explore their emotions, experiment with different activities, and discover what gives purpose to their lives. Just because they won’t be hitting conventional life milestones doesn’t mean they can't dream or aspire to something more.
And they can't do any of this if all they are expected to do is to follow our instructions.
On November 6th, I will be introducing my self-formulated approach of EpiEco to professionals in the social service sector at the National Council of Social Services' Social Service Institute (SSI) in Singapore. In this workshop, "Understanding Autistic Meltdowns: Causes, Prevention and Response", I seek to challenge participants to suspend their conventional thinking and reflexes by (1) acquiring an understanding of the inner worlds of autistic individuals and (2) attuning themselves to the well-being of autistic individuals. Within the limitations of a 3-hour workshop, I hope to at least plant the seeds of change by initiating these participants on the road toward becoming empathetic and effective caregivers. Yes, even special needs individuals deserve to have a chance at a quality life!
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