Profound and multiple learning disabilities

Also called PMLD, Profound intellectual and multiple disabilities, PIMD

Communicating with people at the earliest stages of intentional communication, where the partner does most of the work and every response is a real one.

What it is

Profound and multiple learning disabilities describes people who have a profound learning disability together with other significant difficulties, usually physical disabilities, sensory impairments or complex health needs. Most communicate at the earliest stages: through body movement, sounds, facial expression, breathing and muscle tone, before words or symbols and often before the person has learned that their behaviour can make things happen.

That last point is the heart of it. A great deal of communication with someone with PMLD is pre-intentional: the person expresses, and the partner reads the expression and responds as if it were a message. Do that consistently and, over time, the person learns that they have an effect on the world, which is where intentional communication begins.

Who it can help

Families, care staff, teachers and health staff supporting anyone with PMLD, of any age. And anyone who's been told the person "doesn't communicate", which is never true; the question is only whether anyone is listening.

It's not a guide to the medical care that often dominates the day. The argument here is that the communication is what makes the medical care humane, and that it takes no equipment, only attention.

How it works

The partner's work is observation first. What does the person do when something they like happens? When something stops? When they're in pain, hungry, bored? The answers (a stilling, a widening of the eyes, a turn of the head, a change in breathing, a sound) are the person's vocabulary, and writing them down in a communication dictionary turns private knowledge into something every carer can use.

Intensive interaction is the best-known approach: you join the person's own sounds and movements, mirror them, pause, and let a turn-taking exchange grow out of it. It's how infants learn conversation, and it works at any age. Objects of reference, real objects that stand for an activity, give predictability: the towel means bath. Hand-under-hand exploration keeps the person in control of what they touch.

Sensory stories, music, and consistent routines with a clear beginning and end all build the anticipation that becomes choice. And everything is paced slowly, because processing takes time and a response may arrive twenty seconds after you've moved on.

Getting started

Spend ten minutes today doing nothing but watching the person and noting what they do. Then respond to one thing as if it were a message, and see what happens.

Start a communication dictionary with three entries: what the person does, what it seems to mean, what you should do. Put it where every shift can see it and ask everyone to add to it.

Try five minutes of intensive interaction daily: sit close, copy a sound or a movement, wait. Introduce one object of reference for the routine that matters most.

Where to get help

PMLD Link is the UK network for everyone involved with people with PMLD and publishes practical guidance. The Intensive Interaction Institute trains and explains the approach. Mencap has a helpline for families, and Sense works with people who have complex sensory needs. Speech and language therapy via the community learning disability team or the paediatrician.