Continued acquisition
Skills continue to emerge. Ongoing support need does not equal regression.
NATURAL HISTORY & STATE TRANSITIONS
Baseline, context & change
Define usual function, record the context around a change, and distinguish continued acquisition, variable access, events, and acquired loss.
TRACK THE SAME OUTCOME OVER TIME
Start with the fillable Function & State Tracker.
Define baseline, the active context, the exact change, measurement, action, and recovery before reconstructing the timeline later.
WHAT TO RECORD AROUND A CHANGE
Six linked observations turn a reported change into a history that can be compared over time.
Past records and observations can identify a possible change window. A prospective study should repeat the same measure across baseline, change, and recovery whenever clinically appropriate.
- 01
Baseline
Usual function, active diagnoses, supports, and recent stability before the change.
- 02
Context around the change
Illness, sleep, pain, bowel state, meals, fasting or low intake, hormones, medication, procedure, environment, or no clear context identified.
- 03
Observed change
What became newly present, newly absent, less reliable, or measurably different from the person’s own baseline.
- 04
Measurement
The examination, record, EEG, laboratory, imaging, school, therapy, or functional measure capable of answering the question.
- 05
Action
Treatment, support, exposure removal, rehabilitation, watchful follow-up, or no intervention recorded.
- 06
Outcome
Complete, partial, delayed, recurrent, unresolved, persistent, or a new baseline.
Timing supports a hypothesis; it does not by itself establish the trigger, mechanism, efficacy, or adverse effect.
WAYS A COURSE CAN CHANGE
Capacity, reliable access, events, loss, and recovery are different outcomes.
These are possible patterns over time. They do not estimate how often a pattern occurs or show that every course shares one ASH1L cause.
Plateau
Progress slows or pauses without documented loss of a previously demonstrated ability.
Variable access
A demonstrated ability becomes inconsistent across state or setting, then may return.
Episodic change
A discrete event has a recognizable onset and offset and requires event-level differential assessment.
Acquired loss
A previously demonstrated ability is no longer available beyond the immediate state window.
New baseline
Recovery is incomplete or a different stable level of function remains after the event.
ABILITY × ACCESS
A skill can be present but not reliably available.
Before calling a change regression, document whether the ability reappears with cueing, rest, pain relief, seizure control, bowel relief, communication support, a familiar context, or resolution of another physiological stressor or condition. Reappearance does not make the event unimportant; it changes the question being asked.
Ability × access × state →