Intellectual Disability revisited: The Emotional Development approach

Mr A is a middle-aged man who lives in residential care, sharing a group home with several other adults with an intellectual disability. He had lived with his father until he passed away and is now only visited by his niece, though regularly. Mr A has received diagnoses of a moderate depressive episode, a queried psychosis, and controlled diabetes. He is prescribed an antipsychotic, an antidepressant, and as-required anxiolytics.

The as-required medication was being used without a Positive Behaviour Support (PBS) plan, up to once a day. The accidental discovery of this in a regular review by his physician led to a referral to our community learning disabilities team, as this is termed a restrictive practice – it involves an intervention that is not the least restrictive possible. PBS plans were on record, but had been discarded by his care team in the interim, partly because of staff turnover (failure to hand on training or ask for more), partly because of lack of resource to implement the proposed activity plan, and partly because of staff attributions that Mr A is 'controlling', 'manipulative', and 'knows what he is doing'.

How can we help Mr A? We believe that the emotional development (ED) approach in intellectual disability (ID) holds much promise in improving the lives of people with ID, and given recent high-profile examples of poor care, the time has come for greater understanding and use of this model across English-speaking countries.

Here, we will outline the history of the ED approach, describe how it can shape and influence the field, and regularly return to the case example of Mr A.

A third pillar of understanding

The ED approach has underpinned a framework for assessment and treatment, which has flourished in several European countries for over 30 years.

Professor Anton Došen, a Dutch psychiatrist, first proposed his 'Scheme of Emotional Development' (ED) in the late 1980s. His integrative model drew upon findings from neurobiology and developmental psychology, including theorists such as Erikson, Mahler, Greenspan, Stern, and Piaget (Došen, 2005). Došen maintained a keen interest in affective neuroscience, and continued to update his thinking as more was discovered about the developmental aspects of emotional life (e.g. Happe & Frith, 2013).

The revolutionary nature of this approach involves showing how disturbances in mental health can be understood in terms of a range of developmental processes, occurring within the wider social context. This fits with a critical approach to diagnosis; 'challenging behaviour' is not viewed as being 'owned' by an individual, but is rather a social construction which is the product of an interaction between the person and their environment (RCP, 2007).

As applied psychologists in NHS services, we typically face complex presentations of clients who have experienced multiple adverse childhood and adult experiences, several changes to living circumstances, and who have received diagnoses of mental health conditions.  Receiving referrals for 'behaviours of concern' leads us to consider if a behavioural difficulty may be more understandable as reflecting limited, arrested, or regressed ED; that is to say, for some people, neurodevelopmental differences have limited their emotional functioning; for others, traumatic experiences have held back ED; and for yet others, times of stress lead to a regression to an earlier stage.

All of these factors can contribute to the presentation of the person seen by the clinician. Emotional development is related to, but separate from, intellectual functioning and adaptive behaviour (Sappok et al., 2022), and can therefore be thought of as a 'third pillar' of understanding the needs of people with intellectual disabilities. We firmly believe that ED needs equal consideration to intellectual and adaptive functioning.

Following clinical training, I (MH) was invited to join the 'Network of Europeans in Emotional Development' (NEED) group, and was fortunate to become involved in supporting the development of an assessment tool for measuring this emotional delay: the Scale of Emotional Development – Short (SED-S; Sappok et al., 2016). The scale has considerable value when working with caregivers, in supporting them to attune more specifically to the client's needs. This has been particularly helpful in cases where clients have appeared more able in terms of their language skills; indeed, the common finding is that when a person with ID shows significant distress or challenging behaviour, their level of ED is lower than their cognitive ability and chronological age (Došen, 2005). This puts them at greater risk of finding their environmental circumstances overwhelming.

Tasks and needs

But what does the ED approach cover? The model includes a number of different areas of emotional functioning, such as affect regulation, differentiating emotions, and relating to significant others. Each area is split into five stages of development, covering the skills acquired by typically developing children from birth to 12 years.

These stages progress from Adaptation (0-6 months) to Socialisation (6-18 months), Individuation (18 months-3 years), Identification (3-7 years), and Reality Awareness (8-12 years). The model did not originally cover the emotional capacities typically gained during adolescence: it has recently been developed to include a sixth stage from 13-18 years (Social Individuation), for people with borderline intellectual functioning (Tarasova et al., 2022).

The model proposes that each stage of development is associated with specific emotional needs (See Figure 1) and a certain behavioural repertoire. If these emotional needs are met by those in the environment, then this supports the further development of the person's adaptive behaviour. In sub-optimal environmental conditions, where the person's emotional needs are not met, then maladaptive behaviours may occur, which have stage-specific features (Hermann et al., 2022). 

This has particular significance for people who may have more advanced cognitive and motor skills, but whose ED is at the individuation stage or below. In the individuation stage, people will have developed their sense of self and be seeking to increase their autonomy, but will not have fully developed theory of mind skills. This means that they will explore the world and express their own will, but struggle to understand their emotions, and why other people make particular requests or have perspectives that differ from their own. In the socialisation stage, people may become distressed when a familiar caregiver leaves the room, as they have not yet developed secure object permanence.

A person's level of ED is known to be correlated with the severity of challenging behaviour, meaning that lower levels of ED are associated with behaviours that are harder for caregivers to manage, such as 'aggressive' or 'attention seeking' behaviour (Sappok et al., 2014). That is to say, challenging behaviour is at least partly predicted by ED. We contend that this finding alone is enough to require practitioners to become familiar with the model.

Back to 'Mr A'

In our service (AS, VS), clients referred to the PBS pathway also receive an assessment using the SED-S. Mr A's assessment suggested that he lacked the ability to recognise that carers continued to exist when they were not in the room (object permanence), but had to cope with the expectation of self-occupation. On all eight domains, he was functioning at the level normally expected at the socialisation stage (6-18 months). In comparison, his care team expected him to be functioning at the Identification stage (stage 4) or above.

Clearly, the staff team considered Mr A to have executive functioning and lifestyle planning skills that led them to believe that his 'behaviours of concern' (pulling at people's arms, shouting, and banging his hand on the walls) were deliberate attempts to condition them. This caused some moral injury – they felt maltreated by him, which increased their stress, such that the staff turnover was increased and Mr A became known as 'having behaviours' and received an ICD-10 diagnosis (F72.1) which placed the 'pathology' clearly within him.

Sometimes, social care professionals would, guided by understandable ideals and assessment protocols, describe Mr A in terms that were inappropriate to his ED assessment, especially where they had only met him briefly or not at all. These documents would refer to his 'need' to achieve 'personal independence' with reduced support in some middle-distance future. Our assessment was used to challenge such life goals and consult with social care to determine what a realistic scenario for his care arrangements in adulthood would entail; more, not less, in the way of staffing, a smaller staff team, focused on creating and maintaining family-style care.

Implications for treatment

The ED approach is linked to tangible recommendations that can be made to better enable caregivers to meet the needs of people with ID. It can also be thought of as an 'organising framework' for introducing therapeutic approaches in accordance with the person's developmental capacities.

For individuals in the Adaptation stage, it is important to ensure that the need for structure and regularity is met, as well as basic physical needs in terms of food and drink, temperature, absence of pain and sensory regulation, for example. They are also likely to benefit from approaches that involve mirroring, and which enable them to come into psychological contact with caregivers, including intensive interaction, or pre-therapy (Hewett, 2018; Sanders, 2007).

In the Socialisation stage, the development of attachment relationships comes to the fore, as the person begins to explore their environment, whilst needing a 'safe base' to return to. Similar to others at this stage, Mr A required specific 1:1 relationships with key workers and transitional objects were found to be useful during periods of separation. Following the assessment, such objects became acceptable, when they had previously been discouraged as age-inappropriate, or at one time even hidden as a punishment for 'bad' behaviour. 

Previously, Mr A could become hostile to care staff who would not engage in physical play, offer hugs or play games. Again, these actions and his underlying wish for physical affection became desirable, as they met his emotional needs, where previously they were seen as 'immature' and 'inappropriate to his age'.

The Individuation stage is often the trickiest for caregivers, as it involves a delicate balance of supporting the person with their autonomy, whilst providing structure and limits when needed. The person will benefit from having straightforward responsibilities and choices, but will need support to negotiate and manage conflicts. People who function at this stage continue to benefit from 1:1 support, as they may as yet be unable to understand the needs of peers.

In the Identification stage, people become more able to operate in a group and so group-based activities and interventions become more accessible. People can be supported to understand group rules and develop their sense of identity (e.g. their interests, sexuality, gender identity, body image), as well as their interactions with peers.

In the Reality Awareness stage, people with ID are more able to live independently, and so are likely to only need support during major life transitions or times of crisis. Individuals in this stage are typically searching for their own role in groups and a sense of status, and so may need support to find activities of interest and then to appraise their own skills in comparison to others (See de Bruijn, Vonk, van den Broek, & Twint, 2021).

Alongside specific recommendations and approaches, the developmental approach can also be used to inform the process of consultation with caregivers and family members. Different guidelines for reflective questions in each stage/domain have been produced, which help to support mentalisation and enable caregivers to construct the necessary interventions for themselves (Sappok et al., 2021). 

Examples of questions for clients considered to be functioning in stages 1-3 are given in Figure 2. Moreover, I (MH) have drawn on the approach in adapting Attachment Narrative Therapy to support families to build an alternative narrative of their child's behaviour, which has been particularly helpful in cases where parents struggle to understand their child's difficulties in understanding and accepting others' perspectives (Hudson, 2023).

Comparisons between the ED approach and PBS

Positive Behaviour Support remains the most commonly recommended intervention for people with ID and distressed behaviour in the UK. However, as noted by Clegg and Lansdall-Welfare (2022), a large-scale randomised controlled trial did not find a significant benefit of PBS over treatment as usual (Hassiotis et al., 2018). 

In addition, the full version of the NICE (2015) guidelines shows that the evidence underpinning the recommendations made in support of PBS was either of low or very low quality, with a high likelihood of poor blinding, non-specific effects, practitioner allegiance effects, and publication bias, with non-significant results not being published. In a systematic review, Simler (2019) also found a lack of high-quality evidence that PBS can enhance Quality of Life (QoL), teach adaptive skills, or reduce the use of reactive, restrictive practices like physical restraints or psychoactive drug use. It is therefore timely to consider whether the developmental approach can be used to complement or even replace PBS by acting as an alternative treatment approach.

PBS does offer a systematic approach to the assessment of distressed behaviour, a shared format for communication through PBS plans (which can bring together recommendations from various professionals), and a focus on the environmental context, rather than medical symptoms or disorders. However, we propose that a developmental perspective is also necessary to achieve the right person-environment fit, as without it one cannot attune to the client's perspective and adjust the environment accordingly (a view supported by NICE [2015, p. 8-9]). There are also risks in using certain behavioural strategies for people at lower developmental stages, such as time out or planned ignoring, as the person may not yet have developed a sense of self, and could be left with a feeling of abandonment (Frankish, 2013).

Literature on psychotherapy integration suggests that approaches can only be integrated at a conceptual level if they descend from a similar parent model, or include techniques that share the same therapeutic strategy (Lapworth & Sills, 2010). Whilst a pragmatic integration of aspects of the developmental approach and PBS are possible, we would caution against such a development, as the two approaches are based on different assumptions about the origin and maintenance of distress, and how we should intervene. 

For example, the developmental approach is based on strengthening the person's underlying emotional competencies, enabling them to engage in increasingly affectionate and personally intimate interactions, rather than directly reducing the problem behaviour itself (Cullinane, 2016). This allows greater empathy and acceptance towards behaviours that are typical of the person's developmental level, and redirection of carers' energies towards more appropriate therapeutic goals. 

Relational outcomes (such as secure attachment relationships, attunement, and co-regulation) are central, with behaviour change being incidental to this. There are risks that this integrative, relational and mentalising approach, which is core to the developmental perspective, may be lost if is assimilated into PBS. As a result, we concur with Clegg (2019) and believe that at present it is best to offer these approaches in sequence, rather than in combination.

One aspect of a formulation

We would like to conclude by taking a more critical perspective regarding the use of the model. There are risks that lie in an overly rigid use of the approach, particularly if it is used in a diagnostic sense, as this may limit the person's potential for change, as all of their needs and abilities may be attributed to a certain developmental level. 

A more prescriptive use of the model ignores the dynamic interaction between the person and their environment, which is important as a person with ID may function at different stages across settings or at different points in time (Morisse et al., 2021). Individuals may also have strengths and needs in different areas, leading to either a 'synchronous' or 'asynchronous' profile on the SED-S.

These issues are summarised by Došen (2015, as cited in Morisse et al., 2021):

'Stage thinking is a simplification of reality. Development is an irregular continuum with decelerations, accelerations, lags and jumps…According to this model, it is difficult to speak of one stage of development through which the personality is determined. Usually characteristics of two or even more stages are found'.

We are conscious of the unintended potential for the approach to suggest a view that people with ID may be 'child-like' in their behaviour. Instead, it is our firm belief that older children and adults with ID should be respected in terms of their many skills, abilities and experiences, which would not be expected of a younger child. The developmental approach encourages a focus on the person's 'Zone of Proximal Emotional Development' (Hart & Lindahl Jacobsen, 2018); always fostering the client's self-determination and autonomy, whilst not overloading them with expectations which are not developmentally appropriate. 

Furthermore, it is important for the developmental perspective to be viewed as one aspect of a clinical formulation, which must be complemented by knowledge of the person's personal and family history, social context, cognitive functioning and other developmental skills (e.g. language and sensory needs).

Changing the narrative for 'Mr A'

The administration of the SED-S was followed by a feedback session, but staff described the administration itself as 'a revelation', and this transformed the case. Contextualising different skill areas according to stages in typical development allowed staff to reference the development of younger family members in their own personal lives, and had a number of positive effects. Using a clinical workbook informed by the ED model, alongside further support sessions, we co-produced the 'core tasks of emotionally secure care' for Mr A, shown in the illustration that opened this article, where the appropriate care tasks for his level of functioning were added at each of the four points.

Image

Since Mr A was now seen as behaving in the expected way for his level of ED, the narratives used by his care team and professionals began to change. Actions such as calling for his mother were seen as understandable, endearing, and deeply saddening reflections of missing her, without any formal concept of her death, so that it did not seem final or irreversible. The moral injuries of the staff were relinquished as they felt more affection for him.

Organisations can also feel less pressure to 'move on' to more 'independent' living situations, which are often mooted as an ultimate goal, as with the Valuing People (Skills for Care, 2000) initiative. Yet independence is not tantamount to well-being, and can often undermine it, by involving less social contact and the loss of factors that make people well, such as feeling that standing behind you is someone trustworthy who will come to your aid should difficulties arise. 

Reductions in symptoms or behaviours were important in our work with Mr A, but only insofar as they reflected the quality of his relational world. While we demonstrated that on standardised clinical measures, Mr A had 'improved', this was not the primary focus; we wanted to know that he felt loved and cared for, much like he was by his father.

Crittenden (1995) has pointed out that we all live in 'attachment behavioural systems', not in isolation. The ED approach is potentially revolutionary in the field of intellectual disabilities, where clinical, social care, and policy priorities very much require a refocus on emotional development, attachment, and family-style care (Beail et al., 2021). We have so recently learned to our horror about what can happen in the institutional models of 'care'. Instead, we want to develop 'caregiver behavioural systems' that create the conditions for mutual delight in one another.

Dr Mark Hudson, Assistant Professor in Clinical Psychology, University of Nottingham

Dr Allan Skelly, Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust, Gateshead, UK

Victoria Shimmens, Formerly Higher Assistant Psychologist at of Tees, Esk, & Wear Valleys NHS Foundation Trust, York, UK

This article is dedicated to the late Anton Došen (1939-2023), who was a wonderful teacher to many.

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