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'Profound' in relation to those with PMLD / PIMD

Updated: Nov 29, 2022





PIMD / PMLD

The International Association for the Scientific Study of Intellectual and Developmental Disabilities (Profound Intellectual and Multiple Disabilities – IASSIDD) supports individuals and their families who have profound intellectual and multiple disabilities (PIMD). They define this group of people by saying that ‘they are characterized by very severe cognitive, neuromotor and/or sensory disabilities, which lead to very intensive support needs’. From my experience as a class teacher working with children who have PIMD for almost twenty years, it is important to note that these terms are not a diagnosis, and they are not a description of a person. The word profound is used to describe the deep and complex needs these individuals have. An abbreviation of four letters does not reflect the amazing individual children I have been privileged to have worked with and developed relationships with over my teaching career. However, on setting up my new website and blog ‘Autisticrealms’ I began to question how appropriate these terms 'Profound Multiple Learning Disabilities (PMLD) and PIMD were, especially as I was making a conscious effort with my own family to move away from deficit-based language to advocate for my neurodivergent family.

Language I am grateful for Joanna Grace (The Sensory Projects) having a discussion with me recently and sharing her views regarding the language used for children described as having PMLD or sometimes also described as having PIMD. Over my teaching career we have consistently used the term PMLD within the setting I worked, however on reflection I now feel PIMD is more accurate as it reflects the complexities these children have beyond learning disabilities. I feel PIMD moves beyond the focus of learning needs that is implied by PMLD; it reinforces the profound aspect of the multiple difficulties and disabilities these individuals have across ALL areas of their life due to their profound intellectual and multiple disabilities and complex health needs.


This is a group of individuals who are severely disabled but are often further disabled by the barriers that are in the environment and our society. Their profoundly complex needs affect every aspect of their lives, they are fully dependent upon others to access the world and have their needs met. To have a life that is as rich and as meaningful as possible, it is the responsibility of those that are caring for them to take the time to gain a deep understanding of them as unique individuals, to support them to access and experience the world in their own way.


Relationships

It is through the relationships those with PIMD have with the key people who are in their lives that meaningful connections can be made. It is the responsibility of the people that are with those who have PIMD to provide opportunities beyond just meeting care needs; these individuals need and deserve to experience a rich sensory environment that will support their mental health and give their lives quality and enrichment. It is essential to take the time to develop meaningful relationships, so moments of connection can be created that can really give meaning to their lives.


This connection can only happen if the space between you is led by those with PIMD in their own way and in their own time. It is the responsibility of those who are working with the person who has PIMD to work collaboratively with their families and other multiagency professionals to understand their needs and also personalities. You will then be able to gain a greater understanding of not only their health and care needs, but you will learn the unique ways they communicate, their likes and their responses to their sensory world through their vocalisations and body movements, you will be able to develop this further to help enrich their lives.


‘Sensory Beings’ I went on a Joanna Grace’s ‘Sensory Lexiconary’ course a few years ago (The Sensory Projects). Throughout the course Joanna Grace referred to those children with profound intellectual and multiple difficulties as ‘sensory beings’. I loved this term and I resonated with the idea that for the children she was talking about (my own class of children with PIMD) the sensory system was their main way of accessing the world. The idea behind this is described in Joanna Grace’s (2018) 'The sensory projects and sensory being for sensory beings: creating entrancing sensory experiences which goes on to describe the concept'; ‘Sensory-being: the enveloping of natural present-ness and awareness in an unfolding sensory moment,’ and then; ‘Sensory Beings: people whose experience of the world, and meaning within it, is primarily sensory. Often these are the people who do not have access to language.’ The sensory world is how communication can be enhanced and developed and a means to create connections with the world and others.

Sensory world IS their world However, as an autistic person I am aware that I also deeply feel the need for a sensory connection and that for everyone to have a good quality of life we need to have a regulated sensory system. Everyone needs to balance various sensory input throughout the day to meet their needs and so they can function and have a good quality of life, in essence ‘we are all sensory beings’. We are all sensory beings regardless of our intellect, disability or difference of neurotype. The difference being for those with PIMD is that it can be viewed that the sensory world IS their world, and they need people in their lives that understand this and can support them to access and experience it with them.

Identity & Language I empathize with the reasons why Grace (2017) wanted to find a term more positive than ‘PMLD / PIMD’, for these individuals that are already so severely marginalised and are the most vulnerable group in our schools and society. The term ‘sensory beings’ sounds positive and encapsulates a wonderful thought process into a world that is not full of medical deficit; it captures the spirit of what I was trying to create in my classroom with the children. In much the same way this is how the neurodivergent movement has been advocating away from the medical deficit model and campaigning for people to use identify first language (e.g., autistic person rather than person with autism). Lynch (2019) wrote in (Neuroclastic) ‘Person First’, ‘Individuals with disabilities are more than their diagnosis. They are people first.’

I am currently trying hard to support the neurodivergent movement and I am tentatively becoming an active member of various online communities, trying to get a balance of knowledge between what is described as the ‘Actually Autistic’ community (made up of autistic adults diagnosed or self-identifying) and other neurodiverse education and parent led communities. We need to move away from the medical deficit model of disability and move towards a more person-centred social approach where people are treated as individuals. It is the environment and the relationships with those around us that determine the extent disability impacts people and we need to do much more to make the world more accessible for everyone (Beardon 2017). I am aware I have a lot more reading to do around the various other models of disability that I have not mentioned here. I believe ‘sensory beings’ was a step in the right direction for these children. However, within the specialised setting I worked all our classes were focused on meeting the sensory needs of all the children in the school. Like in many specialised settings our whole curriculum was multisensory and personalised for every single child, however, not all class groups had children that could be classed as having PIMD. Importance of the word ‘profound’

PMLD or PIMD are not ideal terms, but they are all we have for now. They describe the highly complex needs these children have across every single area of their life. They are the highest needs group in our society, they need high levels of support every day and night of their lives, any word less than ‘profound’ would feel almost disrespectful, to use a word with less weight than ‘profound’ would not feel ‘right’ to me. Emma Murphy, (who has a son that she describes as having PMLD) attended one of Joanna Grace’s sensory teacher training courses with me many years ago. I was recently reminded that it was Emma that prompted some of my initial thoughts around the use of the word ‘profound’ as she is quoted as saying “anything less than (the word profound) almost belittles the challenges he faces” (Little Mama Murphy).


Reflection on teaching those with PIMD When asked about my career I have always said ‘I worked with children who have profound and multiple learning disabilities and complex health needs,’. I often add the word complex to try and emphasize the extent their disabilities and difficulties impact their lives. I have always had difficulty finding the right words that I feel truly represent those I worked with and got to know. Which is what led me to writing this article when setting up my website. I have always taken the time to describe the individual children in my class and to describe the sessions, interactions, and time we spent together, not because they had PIMD but because of the wonderful experiences we shared together. It is through these relationships I have created memories that I will treasure forever. There are no words or language that can describe the moments of connection created between us, moment that were made in their own time and in their own way. No training or qualification or any number of textbooks about teaching, education, medical conditions, or disabilities can ever teach you how to create these connections, they evolve through developing a relationship, spending shared time together and a willingness to be open and join them in their own space (with lots of sensory exploration and fun along the way!).


Regardless of the language used and the multiple labels and diagnoses these children have I looked forward to being with them every day. I feel privileged to have had the opportunity to work with such amazing children and to have been able to learn from their families, and my class teams and other professionals along the way. I grew to understand and learn from all the children I worked with, they have become a massive and important part of my life and have taught me infinitely more than I could have ever anticipated when I began my teacher training around 20 years ago. My career has provided me with the opportunity to learn what I consider to be the true value of teaching, interaction, and communication.

Connection not words

The terms PMLD and PMID are based on deficit language, but the people they are describing are not deficit-based individuals, a word less than profound is not enough to describe the depth of their needs and difficulties.


For these children with the most complex, profound intellectual and multiple disabilities there was never a need for any words between us at all, there was just a deep understanding and a connection between us as two individuals (and lots of sensory play!).


**Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities.

Autistic Realms is a space for parent support and teacher guidance

Autistic Realms is not a business or a charity**

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