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What “sometimes” really means: Understanding fluctuating capacity in children with disabilities

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Imagine a young child in the grocery store who, for the first time, sees a person using a wheelchair. In response to their finger pointing and perhaps a childishly worded question, they receive the first lesson in disability they’ve ever had: that person cannot walk. Disability is when somebody cannot do something that most other people can do.

This explanation is simple and concrete enough for a young child. The problem arises when a person’s understanding never goes any deeper than that. Because if disability is when somebody can’t do something, then what is it called when they can… sometimes? 

What about the young, autistic child who can sometimes put on his own shoes, but other times refuses?

What about the teenager with ADHD who can sometimes keep track of her homework, but other times doesn’t even check her planner?

What about the wheelchair user who rolls out of the grocery store, gets to her car, and stands up to stow the chair in the trunk?

Are these disabled people faking it? Choosing to behave badly? Or is it just that disability is deeper and more complex than a toddler-level understanding?

Fluctuating capacity

Across many disabilities, an individual’s day-to-day ability to carry out certain tasks might be higher or lower. There could be practically infinite reasons for these fluctuations: 

  • The person slept better or worse the night before and woke up with more or less fatigue or chronic pain.
  • The sensory environment around the person is improving or draining the capacity they have left over for everything other than processing their sensory environment.
  • The person has an unmet biological need, like eating, drinking water, or using the toilet, that their brain is devoting energy to thinking about how to solve.
  • One or many social interactions from today have been energy-giving or energy-draining for the person. 

The list could go on and on, and importantly, only a very small part of it would have to do with the immediate environment or precursor of what has happened for that person. It is a formula much too complicated to plug into any calculator. It is the sum total of factors associated with living, continually, in a body that is in fact disabled, but whose dis-ability might look different for different things at different times. In short, it fluctuates. 

Supporting a child with fluctuating capacity

A strong starting place is to believe them. Disabled children are overwhelmingly likely to be assumed to be manipulating their adults into doing things for them that they’re “perfectly capable” of doing themselves, just because they did it once on a good day. 

Once, on a good day, I spoke for eight hours at an intense, exciting conference—and then I lost my voice, went home, and slept for two days. I couldn’t wake up the following day and do it again.

If a child is saying with their voice or demonstrating with their body that they just cannot do something right now, assuming that they can’t (rather than won’t) allows you to approach them with a mentality of providing support. 

Assuming that they won’t leads down a road that ends, most dramatically, in trying to hurt or otherwise make the child so uncomfortable that they will spontaneously develop a skill that they may not have. It’s a very dangerous and unnecessary road. What is the worst that can happen? If there did exist a child who actually won’t and you treat them like a child who can’t, then they learn that even at their worst, they will still be loved and cared for. But if you have a child who can’t and you treat them like a child who won’t, then they learn that their best is never good enough and that the adults expect impossibilities from them. 

Your role as the clinician

Understand that you might be seeing the “peak” or the “valley” of the fluctuating capacity. There’s no way to know which it represents unless you interview someone who spends regular time with the child. 

For some children, your office may be a novel setting, and the excitement gives them enough capacity to outperform their usual. The fact that you’re providing one-on-one attention could also increase their capacity. Perhaps if they’ve missed school for this appointment, then they will have avoided other energy-draining activities, and what they look like at 11:00 a.m. today isn’t how they look at 11:00 a.m. on a typical Thursday.

For other children, the new location feels like a threat; their body might be hypervigilant, spending valuable resources on staying guarded so they can stay safe, and they can’t show you the actual level of ability they would have in their day-to-day life. The sensory environment—bright lights, echoey exam rooms, unfamiliar smells—could also contribute to a lower capacity, as could the pressure of feeling judged while trying to perform. 

When interviewing the caregiver of a child with fluctuating capacity, consider the types of questions you're asking. Give examples or discuss situations whenever possible.

You will get far more information from a question that invites context—"He can put on his shoes and socks independently to go to the park, but it takes about 30 minutes of distracted wandering and then fighting to coordinate his hands to get the sock on, so on school days, I just do it for him"—than from a closed response like "He can put on shoes and socks" or "He can dress himself at an age-appropriate level."

This is also information worth sharing explicitly with caregivers. In my experience as a clinician, the "fear of being manipulated" I mentioned earlier is overwhelmingly likely to be a disguise covering up complete exhaustion. Caregivers of disabled children are tired—tired from fighting systems, tired from giving constant care. When their child shows they might sometimes be able to do something, the caregiver hopes it means one task off their plate. If it turns out that thing isn't reliably possible—not always, not in all circumstances—the adult can feel robbed. They wanted a break. And out of that robbed feeling, they sometimes blame the child.

Giving the adult language to understand fluctuating capacity doesn’t make everything easier for them or their child, but it does help them to understand that their child isn’t intentionally being bad or trying to make their life difficult. Their child isn’t their adversary, but their teammate! They are on a team together trying to navigate a difficult world.

As clinicians, we are uniquely poised to be able to support a child with fluctuating capacity by: 

  1. Believing they are doing the best they can do, rather than believing the worst of them when they show us fewer abilities than we would expect to see
  2. Taking into account that what we see during their assessment or treatment might actually be higher or lower than their typical baseline
  3. Advocating to their caregivers to be able to see them in the same way, and to be able to support them when they are at their highest and their lowest level of abilities 

Kelsie Olds is an occupational therapist, mom of two and author of Your Child’s Point of View. They can be found on Facebook, Instagram, TikTok and The Occuplaytional Therapist website www.occuplaytional.com.

Looking for tools that incorporate the caregiver’s point of view and measure everyday performance rather than maximum capacity?

The Vineland™-3 uses caregiver and/or teacher ratings to quantify what the individual does do vs what they can do.

The PEDI-CAT asks caregivers to report how difficult everyday activities are, and how much responsibility is borne by the caregiver vs the child.