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The Inner Worlds and Minds of Children with Multiple and Profound Learning Disabilities – Bridging Gaps and Driving Change

Journal of Psychiatry Reform vol 12, #5, February 25, 2025

Author

Elizabeth Charnock, MSc (CAMH), BSc (Hons), MBACP.

Key Words: Child and Adolescent Mental Health (CAMH), Emotional Experiences, Inner Minds, Inner Worlds, Language-Based Learning Disabilities, Learning Disabilities, Mental Health (MH),  Profound and Multiple Learning Disabilities, Theory of Mind (ToM).

Introduction

In my exploration of “The Inner Worlds and Minds of Children with Multiple and Profound Learning Disabilities, What do Child and Mental Health Service (CAMH) Professionals Know and How Does This Influence Practice – An Epistemological Study”, [1] I have delved deeply into the unique emotional landscapes and cognitive experiences of children with Profound and Multiple Learning Disabilities (PMLD). This journey was inspired by my personal connection to the subject, igniting a passion for understanding these often-overlooked individuals whose inner worlds remain shrouded in misunderstanding. Through the exploration of this topic, I aimed to illuminate the profound complexities of their lives and the significant gaps in professional understanding that must be addressed. (This assertion pertains specifically to professionals within CAMH services, which primarily adhere to the dominant biomedical model. It does not necessarily extend to those working in the voluntary sector or third-sector organization).

 

Acknowledging the Gap in Knowledge

There is an evident gap in literature and research regarding the emotional experiences of children with PMLD. Many child and adolescent mental health professionals in the UK working within the statutory sector often view these children as lacking independent thought. Pivotal studies by Colle et al. [2,3] and Godin, & Bélanger-Gravel [4] indicated that many children with PMLD are often perceived as having no inner thoughts, leading to a disregard for their rich emotional experiences. This perception contributes to a general misunderstanding of their capabilities and a significant deficit in appropriate mental health care and support. The prevailing biomedical model tends to prioritize deficits rather than recognizing the many strengths these children possess. Historically, professionals have focused heavily on the limitations associated with PMLD, leading to a cycle of exclusion and underestimation and alarming health inequalities.

 

Understanding Through Historical Context

Eugenics and other discriminatory historical practices have had a hauntological impact on mental health professional’s perceptions. The legacy of eugenics has served as a haunting reminder of societal attitudes toward disabilities. Throughout the 20th century, the narratives surrounding learning disability often painted a bleak picture, leading to an enduring stigma that affects current practices [5]. Traditionally, systemic failures have perpetuated prevalent stereotypes. The social model of disability offers a more nuanced view by emphasizing the importance of societal attitudes and structures in shaping the experiences of individuals with cognitive disabilities. Comparison of the medical model with the social model could lead to a transformative perspective for individuals with PMLD and for those who support them [6] Understanding their emotional and cognitive complexities requires confrontation of the unconscious biases that have historically informed our approaches to learning disability.

Theory of Mind  (ToM) and Professional Practice

ToM refers to the ability to attribute mental states to oneself and others, enabling individuals to understand different perspectives [7]. In the context of PMLD, an enhanced understanding of ToM can illuminate the intricacies of social interactions and emotional experiences among these children. Recent studies underscore that children with PMLD can have sophisticated cognitive processes and emotional lives [8]. If CAMH professionals fail to recognize these capacities, they may inadvertently adopt a deficit-focused model that promotes disconnection rather than connection. Strategies aimed at improving professionals’ understanding of ToM can lead to better engagement with these children. Training that emphasizes empathy and acknowledgement of these children’s emotional states can dramatically alter the interactions between caregivers, health professionals and children with PMLD . [9].

 Language and Communication Challenges

Children with PMLD face a myriad of challenges in expressing their thoughts and feelings, leading to significant barriers in communication. Their inability to articulate their emotional states often leads to misunderstandings, which can manifest as challenging behaviours. This misinterpretation jeopardizes their wellbeing and disrupts the child’s and their caregivers’ dynamic [10]. Alternative communication methodologies, such as augmentative and alternative communication, can effectively enhance the communicative intentions of children with PMLD. There is a need for a shift away from ‘talking therapies’ in favour of more suitable alternatives, for example, Art and Music Therapy, which allow children to express themselves through various forms of art. This can be particularly effective for those who may struggle with verbal communication. It offers a non-verbal outlet for emotions and experiences [11]. Effective communication strategies often lead to better behavioural outcomes and improved relationships between children with PMLD and their caregivers [1,13,14,]

 

The Emotional Experience of Children with PMLD

The emotional experiences of children with PMLD are complex, nuanced and misunderstood. These children possess feelings, thoughts, and desires but often struggle to express them adequately. The lack of targeted services and limited awareness of their emotional experiences and mental health needs among CAMH professionals significantly impacts the mental health and treatment outcomes of these children [15]. This gap presents a critical need for improved training and awareness programs for CAMH professionals in the UK The emotional worlds of children with PMLD are often overlooked, which can result in a lack of tailored interventions that address their specific psychosocial needs. This reality is alarming, given that emotional wellbeing is intrinsically linked to overall development and quality of life [16]. Many  CAMH professionals and academics still mistakenly hold the belief that children with PMLD are incapable of experiencing complex emotions [17]. Qualitative research studies describe a wealth of emotional experiences articulated by parents and caregivers who have observed profound emotional connections, even in non-verbal children[18-20]

 

Conclusions and Implications for Practice

Even the most vulnerable and cognitively impaired children possess rich dimensions of consciousness and potential: it is essential to look beyond the superficial and appreciate the profound inner lives of children with PMLD. It is imperative that CAMH professionals advocate for mental health treatment and practices that honor and harness their emotional and cognitive capabilities, thereby dismantling the barriers of misunderstanding and stigma that have endured for far too long.

In this view, the following actionable steps are proposed for mental health professionals caring for this population:

 

  1. There is a need to reassess professionals’ beliefs surrounding the emotional capabilities of children with PMLD. By acknowledging their inner worlds through qualitative assessments and targeted interventions, they can better inform practices that support psychosocial development.
  2. Integrate mental health considerations into educational and clinical settings. This alignment can lead to better outcomes.
  3. Training programs for CAMH educators, professional’s therapists and healthcare decision-makers should incorporate evidence-based practices focused on emotional recognition and improved mental health support for children with PMLD.
  4. Involving families in this process can create a more holistic understanding of each child’s unique needs.

 References

  1. Charnock E. (2023). The Inner Worlds and Minds of Children with Multiple and Profound Learning Disabilities: What Do CAMH Professionals Know and How Does this Knowledge Influence Practice? [Unpublished manuscript] Available from: <publishing version PMLD.docx> [Accessed February 19, 2025].

 

  1. Colle L, Baron–Cohen S, Hill J. (2006). Do children with autism have a theory of mind? A non-verbal test of autism vs. specific language impairment. Journal of Autism Developmental Disorder. [Online,]. 37 (4), pp. 716-723. Available from: https://link.springer.com/article/10.1007/s10803-006-0198-7 [Accessed February 19, 2025].

 

  1. Colle L, Baron-Cohen S, et al. (2006). Understanding the mental health states of children with autism. Journal of Child Psychology and Psychiatry, 47 (5), 490-498.

 

  1. Godin, G, Bélanger-Gravel, A., & Eccles, M. et al.  (2008). Healthcare professionals’ intentions and behaviours: A systematic review of studies based on social cognitive theories. Implementation Sci ence, 36  (3).Available from: < https://doi.org/10.1186/1748-5908-3-36> [Accessed February 19, 2025].

 

  1. Charnock E. (2022). An Investigation into mainstream primary school teacher’s understanding of NSDI’s (Non-Suicidal Deliberate Injuries and Self Harm): Their relationship to each other and how they influence teacher responses to them. [Unpublished manuscript]. [MSc Assignment] Leeds Beckett University.

 

  1. Male F,  Rayner S. (2007). The role of the social model in understanding learning disabilities. Journal of Learning Disabilities, 40 (6), 539-549

 

  1. Premack D, Woodruff G. (1978). Does the chimpanzee have a theory of mind? The Behavioural and Brain Sciences, (1), pp.515–526.  F. C. Trans.; (2nd ed.). Princeton University Press.

 

  1. Voyles Askham  A. (2022) Theory of Mind in Autism: A research field reborn. [Online]. Available from: <https://doi.org/10.53053/GXNC7576> [Accessed February 19, 2025].

 

  1. Colle L, Baron-Cohen S, Hill J. (2006) Do children with autism have a theory of mind? A non-verbal test of autism vs. specific language impairment. Journal of Autism Developmental Disorder. [Online]. 37 (4), pp.716-723. Available from: < https://link.springer.com/article/10.1007/s10803-006-0198-7> [Accessed February 19, 2025].

 

  1.  O’Kane, J., & Goldbart, J. (1998) Communication Before Speech: Development and Assessment 2nd (ed). London: David Fulton.

 

  1. Karkou V,  Sanderson P. (2006). Arts Therapies: A research-based map of the field. The Arts in Psychotherapy, DOI:1016/B978-0-443-07256-7.X5001-3 [Accessed February 19, 2025].

12.   Bradley H. (1998). Assessing and Developing Successful Communication, In P Lacey & C Ouvrey (Eds) People with Profound and Multiple Learning Disabilities: A Collaborative Approach to Meeting Complex Needs. London: David Fulton.

 

13.  Mednick, M. (2007). Supporting Children with Multiple Disabilities. London: Continuum.

 

  1. Nind M,  Hewitt D. (1994). Access to Communication: Developing the basics of communication with people with severe learning difficulties through intensive interaction. London: David Fulton.

 

  1. Simmons, K, Bayliss P. (2007). Understanding the emotional experiences of children with learning disabilities. Accessing Learning Disabilities, 21 (3), 213-227.

 

  1. Simmons K,  Watson S. (2014). Challenges faced by children with profound disabilities. Childhood, 21 (3), 336-352.

 

  1. Smogorzewska J, Szumski G, Grygiel P. (2018) Same or different? Theory of mind among children with and without disabilities. PloS one. [Online]. 13(10), e0202553. Available from: <https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0202553> [Accessed February 19, 2025].

 

  1. Voyles Askham A. (2022) ‘Theory of Mind’ in Autism: A research field reborn. [Online]. Available from: <https://doi.org/10.53053/GXNC7576> [Accessed February 19, 2025].

 

  1. Safira I, Rangkuti R, Nasution E, Harefa Y. (2020). Non-Verbal Communication by Autistic Children. ELS Journal on Interdisciplinary Studies in Humanities. (3). pp 492-505.

 

  1. Yirmiya N, Erel O, Shaked M, Solomonica-Levi, D. (1998) Meta-Analyses Comparing Theory of Mind Abilities of Individuals with Autism, Individuals with Mental Retardation, and Normally Developing Individuals. Psychological Bulletin, 124(3), 283-307. https://doi.org/10.1037/0033-2909.124.3.283 [Accessed February 19, 2025]

Useful Links

CAMH – Child and Adolescent Mental Health. Available from: (https://www.caCAMH.ca/en)  [Accessed  January 2025].

National Health Service Learning Disabilities. Available from: https://www.nhs.uk/conditions/learning-disabilities/ [Accessed January 2025].

Mencap – Supporting People with Learning Disabilities. Available from: https://www.mencap.org.uk/ [Accessed January 2025].

Acknowledgements

As I reflect on this journey, I am profoundly grateful for the invaluable contributions of my mentors and supporters, Adele Reid, James McCrorie, Maria Burton, Michele Sorkin, Dr Bill Penson, and my beloved Arran. Their steadfast support has been crucial, reminding me that every effort to understand and advocate for these children is worthwhile. Each individual has provided invaluable support to me personally while also playing a pivotal role in shaping the discourse on the maintenance and protection of the emotional health of children with profound and multiple learning disabilities (PMLD) and the related practical limitations.

 

 

 

 

 

 

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