PROJECT: Do You Know How I Feel?

In January 2023 We held a workshop as a continuation of our work exploring ‘do you know how I feel?’, ‘what is emotional wellbeing?’ and how might emotions be expressed and responded to when people are communicating with us in ways other than words.

In this 1.5 hour Zoom workshop, facilitated by NAC and Story Sharing, we shared with what we have learnt since our first workshop back in 2021 and asked:

– From what we have found out so far do our interpretations make sense?

– What do we need to do to make what we have learnt have practical use and benefit people with severe and profound intellectual disabilities?

– How can we ensure that we are including and being informed by people with severe and profound intellectual disabilities and their families?


Do you know how I feel Jan 26 2023 presentation slides

View the workshop video recording


Notes taken from discussions between 50 family members and professionals in Zoom breakout rooms in response to the question: 

What would a ‘Do you know how I feel’ tool need to include?
Please think about process, product and any training and resources that might be needed.

Room 1

Observation – looking at a body map style document – thinking about subtle changes in their body – linking that to environmental changes too.  Thinking about facial expression, flickering of the eye etc.

Intensive Interaction – Do you have to have to directly know how someone is feeling – or can you just ‘be’ with it. So much focus on taking something away from an experience – if we can just be with it, it might be more beneficial to them.

Training – thinking about modelling, having some sort of module videos, including a case study.

Audit document that shows a scatterplot /quadrants (?) of groups of pupils (so there is a graphic representation for comparison – a bit controversial but perhaps useful to think how we should not leave anyone behind).

HOP (Hanging Out Programme) – plenary basis of discussions.

Learning Outcomes that are not just cognition/communication based for PMLD pupils (although other schools may be different).

Collaborating with therapists, Occupational Therapists, speech, family to invigorate strategies and motivate real (not lip service) outcomes.

Room 2

Process more important …. How get there.

Structure learning.

Product null and void.

Education world outcomes… can’t predict.

Video the best. Responses and reactions.

Recording and labelling it.

Lots of videos in different states show dysregulated as well as positive.

Track trends in behaviour identify triggers.

Information from parents. To help educators.

Triangulation of data.

Interoception. What are bits of body doing??

Changes. Sensations.


Kelly Mahler – Interoception curriculum.

Tool – Something cheaper and more adapted for people with profound and multiple learning disabilities than this.

Fitbit can help give biofeedback.

Training: information and knowledge.

Hanging out programme Sheridan Forster

Promotes spending ten mins everyday key worker for a week. Log what happened. Person led. Evidence impact.

Tool: Something that could travel with the person across settings classroom, health and social care.

Perhaps like Wiki sharing platform across agencies.

Multi-me. (2020) My Wiki and multi me. [online] Available at:

Room 3
1. Students struggle to identify how feeling – just say they are tired.
2. If have communication needs then will be hard to express needs. The communication partner needs to be a skilled observer in different situations and to become good people detectives so can read their emotions.
3. So tool should move away from labelling emotions or encouraging our students to label their emotions. It should be about when I am worried about things, how do I look.
4. Look at the wider picture including pain – Identifying when people are unwell – when health deteriorating. E.g. constipated / stiff / unwell.
5. PMLD standards there is a description about holistic vulnerability – one thing impacts another. If someone can now tell us that something is wrong that helps others to try and work out what it is.
6. What is usual for someone e.g. how much sleep / typical core temperature.
7. General what motivated by / styles of interaction.
8. Physical appearances – sleep / appetite / behaviours that are different.
9. DISDAT – cautions because situation specific. May show different types of pain in different ways. Muscle pain might present different from spasm / toothache.
10. Would video be useful to show what the baseline behaviour/s is/are?
11. List of headings to support that you observe – helping you to be a better observer.
12. List of strategies that might try to help you find out what is wrong.
13. Look at what has changed within the person and what has changed in the environment e.g. key member of staff on holiday / changed bedroom etc.

Room 4

If sad try to solve the problem, i.e. the reason rather than trying to change the emotion.

Co-regulation is important – through body language conveying ‘it is ok to have this emotion’. Make it safe for someone to feel the way they do.

Room 5

Little time to read therefore needs not to be onerous.

Succinct, key points.

Simple and easy to understand, no jargon.

Allow for time discussing what is going on for a person.

Discussions should be holistic.

Sometimes services don’t want to discuss what they regard as negative points or emotions.

Ok if the person is showing they are unhappy.

Need to change the culture of trying to move people away from unpleasant emotions.

Behaviour training is needed.

Changes in behaviour should be discussed.

A tool needs to work everywhere.

Room 6

– The toolkit needs to have video clips.
This will enable the children and adults for whom it is designed to develop ownership and input to the process.
We thought this was an exciting aspect of the toolkit – as a process of development for the individual.

– Recognising your own feelings (and maybe naming them) is different to others being able to recognise them.
We need to have a full range of emotions on offer in the kit (22-25).

– Some emotions are subsets of others. We need to be aware of this as we construct a list.

– Being emotional detectives: We need to be cautious about pinning feelings down – record our evidence for why an interpretation might be correct (or wrong!). For example, Sarah quoted a mum who said that giggling seemed to be a sign that her son was unhappy; he loves his tablet and if this is misplaced or broken, this is his response. Pete said his grandson seems to giggle when he is happy, like watching his favourite videos.

– We need this tool to allow for very individualised responses and expressions and also a “maybe…don’t know” space for exploration.

Room 7

– Must be multimodal (words, vocalisations, movements, facial expressions, body positioning).Room 7
– A tool which prompts us to be an investigator.
– There is very little in place at my school currently.
– As a process – maybe a detailed observation of people (pupils) in conjunction with families to formulate an ‘interpretation’.
– [A tool that is] A prompt to practitioners to reflect and consider the link between emotions as physical and this being explained to the person. Is it that the physical sensation is a base need?
– A tool to me is a place where information goes in and comes out of. Sadly, recruitment/staff turnover and shortages often means the output is lost or it is not fed into.
– Videos might capture nuanced actions, vocalisations. perhaps the person watching themselves back as the interpretation of the emotion is spoken about to them.
– A paper ‘portrayal’ of a person often isn’t accurate or accessible or overly helpful to interpret or understand. Usually a verbal explanation to a member of staff coming into the class for example is much more understood e.g ‘if they do this… it means…’.
– [A tool] to encourage people knowing it is a process [understanding EWB of a person] which changes and adapts. Questioning – in what contexts might their EWB be different? or look different?.
– Multiple sources of input (e.g professionals, parents, teachers) does it make it more reliable or does it cause a range of different interpretations of the same thing for that person?
– A tool needs to go back to the themes of needs and feelings – what does safety look like for that person?
– Maybe staying away from a label of the feeling? You can be more than one feeling at a time.
– Finding a way to reduce the pressure of ‘distress’ being negative or negative feelings and the reluctance to show a negative feeling as that isn’t helpful to the person. They may feel they can’t be upset because it gets a bad response or it isn’t okay.

From a parent by email

  • Validation of feelings, interpretation of feelings and perception of feelings. What do we do with those, and how do we manage them?
  • A physical response inside our body comes to the fore and makes our limbs, face, head, eyes etc react. Or our arm, say, do an involuntary movement (without conscious control).
  • Is there a cluster of feelings that we can identify as meaning something when we see them together?
  • So a yawn (response to tiredness/boredom), do we ALL experience this? Common responses (neurotypical) vs complex responses (neurodiverse) i.e. a “jump” or continued startle reflex (sensory involuntary movement) and starring ahead for a few moments at a time – is this starring to focus or is it something else? This would be of importance for someone to note and pass onto the parent or career as maybe of significance to the holistic picture. The person would need to be attuned to the child/young person/adult.
  • Do the children know what these feelings are or is it our repetition of labelling them with them verbally, that will support to embed them and get the recognised more and more for other people/professionals.
  • Offering choices via the senses to enable processing and then assessing feelings about this “in the moment”.
  • Neurotypical children have difficulty labelling feelings as we adults do too.
  • I really liked the idea about labelling the feeling then touching the part of the body or showing the person you understand the feeling they are expressing to you, through involuntary movements, recognised facial expression or common movement.

Some of the points made in the Zoom chat box

Tool for individuals to share their own communication style.

Video snippets on tablets.

Evidence for interpretations… why do you think this behaviour shows this emotion, and what might a counter interpretation be?

Needs to grow with people.

I think that setting emotional targets might be counter-productive particularly when working with staff who are not well trained. People feel from what they experience. We should use strategies which we believe might make a difference e.g. hangout. It would be good to have feeling tracking, so we have a good idea of what might them happy, sad, withdrawn etc…

Oh please no targets!!!! Except for staff.

The session ended with a general consensus to move forward with the development of a process to support the emotional wellbeing of people with severe and profound intellectual disabilities.

Please contact [email protected] if you would like to get involved in this project or have any ideas about how we can resource the development of the work.