Helping distressed people with intellectual disabilities to manage their chaotic emotions

Abstract

In Anglophone countries, the 40% of people with intellectual disabilities who show challenging behaviour, mental health problems, or both, are usually offered behavioural rather than emotional interventions. Yet much of their distress has originated in emotionally damaging personal histories, since children with intellectual disabilities are much more likely to experience adverse childhood experiences that predict significant mental health problems in adults. This clinical research review addresses that. It raises two issues: first, provision of effective support to parents (considered elsewhere); and second (the focus of this article), how services for distressed adults can address the untapped potential for development and growth in their emotional lives. A key finding in favour of an attachment perspective is that the emotional development of people with intellectual disabilities lags significantly behind their cognitive development, and their level of emotional rather than cognitive development predicts challenging behaviour. Two attachment assessments that can frame intervention have been considered: the Scale of Emotional Development–Short; and the Adult Attachment Projective Picture System. Related system changes necessary for services to implement attachment-informed interventions were then identified: specialisation rather than eclecticism, ensuring that trauma-informed care is applied with fidelity, and staff stability.

Keywords:

• Intellectual disability
• attachment
• assessment
• trauma
• emotion

This clinical research review addresses a paradox. Since self-harm, volatility, aggression, and violence emerge from and express strong emotions, why do Anglophone countries understand and meet such distress with behavioural rather than emotional interventions? Some 41% of people with intellectual disabilities also show mental illness (18%), challenging behaviour (13%), or both (10%) (Sappok et al., 2021). Although the distinction between challenging behaviour and mental illness is far from perfect (Sheehan et al., 2015), international preference for a social over a medical understanding of intellectual disabilities has supported exponential growth in research and policy attention to challenging behaviour.

Framing a problem as behavioural invites a solution that is behavioural. The ahistorical assumption that challenging behaviour is maintained by a current environment defined as unsuitable is attractive to those who baulk at any descriptor that seems to label or blame. Yet rejecting the potential impact of negative early life-experiences or genetics also draws attention away from understanding the emotional distress and dysregulation that can underpin problematic acts. Fifty years ago, Wolfensberger (1972) countered demeaning narratives with positive descriptions of people with intellectual disabilities, a change widely recognised as just and timely. He revised this in 1994, critiquing “saccharine” language that spread “phoney optimism,” but this had no impact (Wolfensberger, 1994). Feeling constrained to describe people with intellectual disabilities in exclusively positive terms has become a “moral imperative” (Clegg et al., 2008: an expected discourse). Among many disadvantages, this makes care staff distrust formal reports because there is no description of troublesome actions they need to understand and respond to. While positive representation did help to change attitudes, it also led and continues to lead distant politicians and managers to underestimate the deep distress experienced by a significant minority of people with intellectual disabilities whose emotions can be chaotic. Politicians attribute failure to close institutions to inertia, showing no awareness of entrenched levels of dysregulation that make some people difficult to support, and difficult to place. These are the kinds of emotion displays that disconcert people.

One man frequently spread urine and faeces over himself and around the walls and floor. One day when he was doing this – very angry and red-faced, and making obscene gestures as I drew near – I asked him what was the matter. He stopped shouting and making gestures, and asked quietly – “Where’s Daddy?” (Hubert & Hollins, 2006, p. 71)

Touch was extremely important to him [Sam, who was blind], but he encountered very little, because he was inclined to grab hold of people very tightly and scream, so most people avoided getting too close to him. (Hubert & Hollins, 2006, p. 72)

Mothers can be at particular risk from sons.

At his worst, Sky targeted his rage at Trudy [his mother]: pursuing her through their house, tearing doors off hinges, and forcing Trudy to lock herself in a closet for safety. … Sheriff’s deputies discovered Trudy beaten, unconscious, and barely breathing on her kitchen floor and Sky in the basement, blood splattered on his pyjamas. Trudy died eight days later. … [as a result]. American novelist Anne Bauer published [a blog] The Monster Inside my Son (Bauer 2009), which vividly described her autistic son’s aggression and her family’s difficult decision to institutionalize him. Online, many parents identified with her abuse. “My son is 22 and has autism, mental retardation and is non-verbal,” wrote one mother. “He has gotten quite violent with me in the past, severely and repeatedly slamming my head into the floor or head butting me until I was able to escape. (Clifford-Simplican, 2015, p. 218)

Bauer (2009) was criticised online for adding stigma to an already marginal group. Acknowledging that problem, Clifford-Simplican (2015) nevertheless argued that it has been equally problematic for these mothers to see no published material that reflects their experiences, nor that of the staff who subsequently work with such distressed individuals. So, although associating any negative term with intellectual disability does risk demeaning people, there needs to be space to think about those individuals who are not only distressed but often act it out.

An assumption shared by the social model and behavioural psychology is that the chaotic actions of distressed people are attributable to their immediate environment, and can be addressed by changing it. Yet psychologists as much as paediatricians and psychiatrists have shown how the actions of some individuals are shaped by biology rather than environment (Agar et al., 2021). Others have revealed the role of personal history: sadly, adverse childhood experiences are much more common in the lives of children with intellectual disabilities (Vervoort-Schel et al., 2018). A nationally representative sample of substantiated child maltreatment cases in Canada (Dion et al., 2018) found that, while children with intellectual disabilities are roughly 1% of the general population, they are 11% of this maltreated population. Relative to typically developing children, their abuse or neglect is also more damaging because it is both more severe and more prolonged. Maladaptive coping mechanisms developed in childhood become significant mental health problems in adults (Kezelman & Stavropoulos, 2012).

Volatile emotions can be expressed in hyper- and hypo-arousal. There may be rapid swings between regarding somebody as a “hero” then a “zero” (Anderson et al., 2020), when, for example, the member of staff is off sick but perceived to be abandoning. Intense affection then switches to an angry accusation that their “hero” has been abusive. Other maladaptive coping mechanisms include compromised self-understanding that may be expressed in deep lack of confidence, or at the other extreme grandiosity. The number of people with intellectual disabilities who are severely affected by attachment distress is significant. Giltaij et al. (2015) found that 42% of children with intellectual disabilities referred to mental health services in the Netherlands had disordered attachments. In a non-representative sample of adults with mild intellectual disabilities referred to a specialist community team in the United Kingdom, 90% showed significant attachment trauma (Gallichan & George, 2016).

One possible factor contributing to the continued use of behavioural intervention for emotional distress is historical precedent. Concern to support the developing emotional life of children emerged after World War II in the United States and the United Kingdom, but children with intellectual disabilities were excluded from it (Toms, 2013). They continued to be brought up in institutions rather than in foster-families. There they continued to be punished for bedwetting, even though this was newly considered to express emotional distress in typically developing children that punishment would worsen. Attending to the emotional development of children who are typically developing but not those with intellectual disabilities is a trend that continues to the present day. While guidance on children’s attachment (National Institute for Health & Care Excellence, 2015, Guideline 26) identified stability of care as one of three major challenges that services should address, relational continuity features nowhere in policy documents on challenging behaviour in intellectual disabilities. The high level of staff turnover in most residential services is not monitored for league-tables, even though it makes a mockery of any staff development initiative. In similar vein, nor is the problem of people being moved between services frequently tracked. Yet this is in itself damaging: Morris et al. (2020) found that troubled adolescent girls with intellectual disabilities admitted to a forensic service had all moved through multiple placements, one as many as 13 times.

Continued promotion of behavioural intervention is defended by citing positive results from interventions, but recent reviews noted that most studies involve small convenience samples with brief or absent follow-up. At the end of each section of a large literature review (British Psychological Society & Royal College of Psychiatrists, 2015), the behavioural research was characterised as “low or very low quality.” Although the full report’s final summary and its short version made stronger recommendations, specific section conclusions merely concluded that clinicians should “consider” using behavioural intervention. A randomised controlled trial found the latest incarnation of applied behaviour analysis, Positive Behaviour Support, ineffective or no better than treatment as usual for challenging behaviour. Therefore, recent analysis has cast doubt upon the prevalent belief that Positive Behaviour Support is the evidence-based intervention for this group. In summary:

1. Population studies have shown repeatedly that challenging behaviour and severe mental health problems persist for decades (Cooper et al., 2009; Taylor et al., 2011).

2. The full review (rather than the positive conclusions of the summary) rated the evidence for behavioural interventions as low or very low quality (British Psychological Society & Royal College of Psychiatrists, 2015). A more recent systematic review (Simler et al., 2019) largely reiterated this conclusion.

3. A randomised control trial found that training staff to use Positive Behaviour Support did not reduce challenging behaviour (Hassiotis et al., 2018). Critics argued that staff were insufficiently trained, but a related analysis examined its process. Staff were given 20% more time to concentrate on these interventions, plus mentoring from an experienced behaviourist, but this was not sufficient to generate Positive Behaviour Support plans that were any better than treatment as usual (Bosco et al., 2019).

4. Underestimation of the intensity of problems experienced and expressed by distressed people with intellectual disabilities is long-standing, not least the significant and occasionally lethal level of violence displayed by a few (Burton & Kagan, 2006; NHS South of England, 2012). There is no research to demonstrate that Positive Behaviour Support is effective with low frequency, high impact aggression or violence by individuals with intellectual disabilities who are relatively high functioning (Taylor, 2021a). Such under-estimation is one of the reasons why sweeping plans to close institutions and move this group into the community have failed completely (Taylor, 2021b).

Of course, none of this justifies the scandalous mistreatment of people who are distressed and disturbed that recurs in developed as well as developing countries, but it does invite a broader context of understanding that opens the door to alternative ways to tackle it.

First, historical analysis suggests that behaviourism’s power rests in part on it chiming with the neoliberal values that have dominated Anglophone cultures since the 1980s (Baistow, 2001). They are still in harmony, even though academic psychology abandoned behaviourism during the second half of the twentieth century (Clegg & Lansdall-Welfare, 2020) on the grounds that it was simplistic and mechanistic. One neoliberal tenet is that competition and choice guarantee quality. Neoliberal inspectorates at arm’s length from government, establish quality criteria, monitor against them to provide league tables, and promote choice. The problem is that such inspectorates brook no questioning of the validity of their criteria, and close down innovation (Clegg et al., 2008, 2017). The argument that league tables enable individual choice also breaks down for this group: services pick and choose whom they will accept, not the other way round (Brown et al., 2017; Cumella, 2008).

Second, the negative outcome of randomised controlled trials should come as no surprise, because intellectual disability is not one but a collection of conditions with varying degrees of impact, shaped by life-histories and situations that are often sub-optimal. Intellectual disability is a common exclusion criterion for randomised controlled trials (Camanni et al., 2021) because the large samples required contain too much variation. Yet there seems to be no room to question the expectation that one intervention could possibly address all the factors that affect people with intellectual disabilities whose emotions are chaotic. Since Positive Behaviour Support interventions are neither as immediately successful nor as enduring as is widely believed, there is room for alternatives. Interventions based on attachment offer radically new insights into an overlooked aspect of human experience, their emotional world.

For children with intellectual disability …attachment relationships may be even more important for healthy socioemotional development … while [their] chances of experiencing secure, organized attachment appear in fact to be lower…. ID [intellectual disability], unfortunately, is a field in which symptoms of disorders of attachment occur in relatively high frequency. (Schuengel et al., 2013, p. 43)

We make no claim that interventions based on attachment are relevant to all people with challenging behaviour or mental health problems, because nothing could be so all-encompassing. Its importance lies in evidence that emotion rather than cognition influences the experiences and actions of a significant proportion of this group (Sappok et al., 2014). This indicates an untapped potential for development and growth in the emotional lives of people with intellectual disabilities that has the possibility to redress non-optimal life-histories and reduce distressed and distressing behaviour. This perspective is not new. Since the 1990s, psychodynamic psychotherapists have provided vital insights into the emotional lives of people with intellectual disabilities. Unfortunately, that evidence base is limited by the long training required, the few psychotherapists who specialise in intellectual disabilities, and scant funding for research (Shepherd & Beail, 2017). Offering no criticism of that tradition, we seek to complement it with more recent work grounded in attachment.

Attachment theory assumes that relationships are vital for everyone but particularly those whose development has been compromised. While Positive Behaviour Support seeks to build autonomy, and fostering autonomy expresses international concern to promote disability rights, attachment interventions seek to build supportive relationships instead. Mental health collectives in the United Kingdom (National Advisory Group on Mental Health & Safety & Well-Being, 2007) and Australia (Kezelman & Stavropoulos, 2012) underlined the way that relationships are both cause and cure for emotional distress. Anthropological research has also underlined the importance of relationships. Instead of imagining that extremely distressed people with intellectual disabilities can come to cope alone, or are able to build a social network in less than welcoming communities, relationships with staff that steady each person and support their emotional development need to be valued and facilitated (Banks et al., 2020; Kulick & Rydstrom, 2015) because they are in themselves change-promoting.

As psychotherapists have described for many years, relationships are experienced and felt more than seen, and difficult to specify objectively. There is no definitive “attachment behavior,” a paradoxical term in increasing use (e.g., Mullen, 2018) that glosses over the difference between emotions and actions. Attachment researchers achieve reliable agreement only after extensive training. They infer a child’s attachment to important others (usually their parents), and an adult’s state of mind towards all relationships, from a range of factors. How people talk is generally more influential than what they say, and some unnoticed ways of relating to another are significant even though fleeting. The ascription of a type of attachment only emerges when an array of indicators form a coherent pattern.

Effective care staff already strive to connect with the people they support, but this often takes up to six months when the only option is trying different ways to respond and reflecting on what works. Sappok et al. (2021) provided a developmental assessment that informs this effort. It reveals crucial information, such as which people with intellectual disabilities have yet to develop the ability to share attention with another person (inter-subjectivity). It is crucial because those who have rarely experienced shared joy are also alone with their distress: attempts to comfort the person cannot connect. Emotion-focussed intervention aims to co-regulate difficult feelings. This occurs when staff use words, tone of voice, facial expressions, or body language that steadies the person who struggles to harness their chaotic emotions. Developing or enhancing inter-subjectivity makes co-regulation possible when self-regulation falters.

The next section reviews two ways to support understanding of, and connection with, the emotional worlds of distressed people with intellectual disabilities. They are relatively new attachment-based assessments that provide a frame for care: the Scale of Emotional Development– Short; and the Adult Attachment Projective Picture System.

Scale of Emotional Development–Short

Most staff work in services dominated by behavioural approaches. Helping them to focus on emotions and relationships needs support, because the objective observational language required by functional analysis does not assist staff to articulate how they formed a relationship. The structured, discursive assessment process of Sappok et al. (2016) Scale of Emotional Development–Short (hereafter, Scale of Emotional Development) provides an essential mental framework. It captures the person’s socio-emotional world by summarising knowledge held by familiar care staff and family onto eight socio-emotional domains:

• Domain 1: Relating to His/Her Own Body

• Domain 2: Relating to Significant Others

• Domain 3: Dealing with Change – Object Permanence

• Domain 4: Differentiating Emotions

• Domain 5: Relating to Peers

• Domain 6: Engaging with the Material World

• Domain 7: Communicating with Others

• Domain 8: Regulating Affect

Sappok et al. (2016) drew on a wealth of research, not least that the stage of emotional development on each of these domains predicted the severity of the challenging behaviour, rather than their level of cognitive functioning. Sappok et al. (2021) described their assessment process, providing illustrative case studies to show how interventions flow from such assessment. Here are two of their examples:

• A woman with a severe intellectual disability can occupy herself for considerable periods in repetitive object-based activities. She seeks physical contact with care staff but pushes other residents out of her way. She can become agitated and noisy, sometimes self-soothing by getting into bed. More usually, care staff calm her in a low-stimulus Snoezelen environment, or during a bath.

• A man with a moderate intellectual disability needs extensive contact with, and reassurance from caregivers, particularly in unusual situations such as a holiday. He struggles to occupy himself, yet also resists attempts to introduce activities.

Scale of Emotional Development discussions often hone in on Domain 4, the struggle to differentiate emotions that affects many people with intellectual disabilities. Even when they can use other abstract concepts, their range of emotion words is often restricted to “happy or sad,” that is, a general positive or negative state. That can result in the person misjudging their own reactions and those of others if, for example, the negative state is anger not sadness. For people with intellectual disabilities and autism, Domain 1 may be more relevant: an unusual relation to their own or others’ bodies may include disconcerting interests, such as sniffing the hair of strangers. For people with a childhood history of Disorganised attachments, Domain 2 may help to understand the intense, Preoccupied relationships some develop towards particular members of staff (these kinds of attachments are capitalised to indicate distinct states of mind brought to all relationships). Such relationships become problematic when the person follows their chosen staff member closely all day, an intrusive experience that feels as if that person is trying to crawl inside their skin. Jealousy can also underpin assaults on other residents that such a favoured staff member attempts to support.

Of the two approaches described here, the Scale of Emotional Development is the most accessible and applicable to most service-providers, although assessment discussions with staff teams do need to be led by professionals who are trained in and familiar with attachment theory.

The Adult Attachment Projective Picture System

This is the most recently-created measure of attachment: there are now three assessments that are reliable, interconnected, and underpin an extensive body of longitudinal research. Sometimes referred to as “gold standard” measures because of their reliability and potential to reveal defensive processes of which people are unaware, they are the Strange Situation Procedure, the Adult Attachment Interview, and the Adult Attachment Projective Picture System (George & West, 2012). These show how three different kinds of organised (survival-supporting) and Disorganised (not survival-oriented, sometimes self-endangering) patterns of relating emerge and evolve, and are likely to persist over time. Becoming familiar with each of these measures and understanding how they inform the categorisation of attachment representations is useful in itself, because they interpret “odd” behaviours explained by no other approach. A range of more accessible brief screening instruments (summarised in Skelly et al., 2017, pp. 42–45) are also available, which can be used by practitioners familiar with attachment theory. The Strange Situation Procedure has been elaborated into age-appropriate procedures suited to children of different ages, but has been neither adapted nor evaluated for adults with intellectual disabilities. The Adult Attachment Interview is an abstract life-history interview suitable for parents or staff, but not people with intellectual disabilities. By contrast, the Adult Attachment Projective Picture System has been evaluated with adults who have mild and moderate intellectual disabilities, with exciting early results.

The Adult Attachment Projective Picture System is a narrative-based assessment. The person is invited to discuss line-drawings of people, creating stories in response to probe questions. What is happening in this picture? What happened before? What are these people thinking or feeling? What might happen next? After practising to ensure that the person with an intellectual disability can generate stories about neutral materials, seven pictures are presented that depict attachment situations. In line with the Adult Attachment Interview procedure, the adult’s state of mind towards attachment is categorised according to how they talk about the pictures as well as what they describe, using Adult Attachment Interview terms: Secure; Dismissing; Preoccupied; or Unresolved. In addition to these categories, it also reveals complex thoughts about death and suffering. Details of the scoring system are given in George and West (2012) but in a nutshell, it examines whether the person can refer to their attachment past without relying on defensive processing. If they do so, they are rated Secure. People characterised as Dismissing distance themselves from attachment distress. People characterised as Preoccupied tend to talk vaguely or in half-sentences that suggest unfinished business. People characterised as Unresolved become derailed by attachment fears that they cannot contain: a major indicator is previously coherent talk that breaks down as they become overwhelmed. These and other characteristic patterns reflect adverse childhood experiences, offering a new perspective on people whose relationships to significant others swing from positive to accusatory and back.

Gallichan and George (2016) piloted the Adult Attachment Projective Picture System with adults who have intellectual disabilities referred to a United Kingdom community learning disability team, who had sufficient language to take part. Attachment trauma was evident in 18 of 20 participants, who expressed helplessness resulting from maltreatment, bullying, or abandonment. While they gave coherent narratives in response to most of the pictures, two were most likely to elicit dysregulated talk: a child sitting alone huddled on a bench; and a man standing in a graveyard. These fragmented narratives reflected preoccupation with suffering or chronic unresolved mourning. There was acceptable inter-rater and test-retest reliability for the assessment. One woman’s manifest problems of overeating and self-neglect had obscured underlying loss and abandonment that were newly revealed by the Adult Attachment Projective Picture System. These issues were addressed during 1:1 therapy, and by care staff taking fear of abandonment into account in the way they supported her. Such Adult Attachment Projective Picture System-informed psychological therapies were rated by two independent experts, and showed face validity (Gallichan & George, 2018). This innovative research reveals how attachment trauma affects adults with intellectual disabilities, how they express it, and how psychological therapy combined with supportive emotional co-regulation by care staff helps people to develop emotionally.

Currently, most attachment research and practice has occurred in the Netherlands, Belgium, and Germany, where the body of work has grown exponentially in the twenty-first century. Uptake of attachment-informed interventions in Anglophone countries has been limited but is growing (Fletcher et al., 2016). If only a few intellectual disability clinicians and researchers were to qualify to use the Adult Attachment Projective Picture System in every country, their impact on intellectual disability practice would be significant. Gallichan and George’s studies indicated its relevance for intellectual disability research and practice, although these authors would be the first to say that more research is required.

Three properties of services that enable staff to co-regulate emotions

Creating and sustaining reparative relationships with distressed people is not easy. When somebody diagnosed with a severe personality disorder insists that you find them a “forever home” with escalating vehemence, the line of least resistance is committing to this despite having no power to deliver on that promise. Repeatedly absorbing aggression rather than reacting and sending it back is equally exhausting. To engender truthful constructive relationships, staff need to be well trained and well supported. Three system properties are required for effective emotion-based practice: specialisation rather than eclecticism; ensuring that trauma-informed care is applied with fidelity; and staff stability.

Specialisation rather than eclecticism

Person-Centred Planning has raised the expectation that all services can and should offer many different kinds of intervention to address different needs, but this leads to new problems. As we noted earlier, the paradoxical term “attachment behaviour” is illogical because it mixes different kinds of phenomena. Attachment is a feeling, not a behaviour. Some experts do argue that attachment interventions can and should be inserted into Positive Behaviour Support (Skelly et al., 2017) but conceptual incompatibility makes this a difficult ask for direct care staff. It is more likely they will choose one or the other because they cannot think about both at the same time. Other publications offer frameworks that combine a range of different incompatible ideas without considering how doing a bit of everything could possibly work. For example, Gardiner et al. (2017) combination of distinct approaches was described in a flow diagram that implies “science” without justification. Research can inform such diagrams: Turner’s (2014) sequence analysis of three years of incident reports identified what was likely to precede an episode of aggression (mealtimes and family visits), with what level of probability. Gardiner et al. (2017) diagram was based on no research or analysis; it also failed to address the conceptual and practical tensions that arise from mixing methods. There was no consideration of the feasibility of training care teams in multiple approaches: cost in time away from residents; retention of each kind of knowledge within a staff team that changes frequently; nor negotiation of their combination. A similar conceptual melange is offered by Leitch et al. (2020).

While no single intervention is likely to be ideal, eclecticism risks being the playground of incompetence. A period of creativity to develop and examine different interventions would be freeing, but equally problematic if they just vie for position. During the 1980s, mental health research was dominated by “therapy wars” that repeatedly attempted to prove the supremacy of the different therapeutic approaches (such as psychoanalysis, counselling, and cognitive behaviour therapy). This research turned a corner when investigators realised that they were asking the wrong question. The crucial issue turned out not to be therapy content, as long as it was provided by a competent therapist, but the relationship each therapist established with their client (Norcross & Wampold, 2018, provide a recent account of this). There was a watershed change once mental health researchers stopped trying to identify the “best” therapeutic approach and redirected their attention onto the therapeutic relationship. In similar vein, different approaches may transpire to be equally effective in intellectual disability when pursued with fidelity.

Moving beyond the assumption that dabbling in a bit of everything is ideal allows a new focus: perhaps, what conditions generate a sense of psychological security. Building a confident creative workplace is more likely to retain staff, so training those who work with distressed adults to specialise in one particular approach could be important. Since asking staff to open themselves to the emotional world of distressed people runs the risk of them becoming overwhelmed, effective clinical supervision that helps staff to manage that must also be introduced. We surely need to end the current attempt to apply multiple incompatible approaches, where nothing is done well enough nor for long enough.

Ensuring that Trauma Informed Care is applied with fidelity

Trauma Informed Care is a framework for service delivery that entered intellectual disability from forensic mental health. Offering new ways for services to take into account the impact of prior trauma on complex challenging behaviour, it was introduced to intellectual disability by Keesler (2014) in a widely cited review that argued it is not a major change in practice. Its alignment with Person-Centred Planning was stressed in “five pillars” that were claimed to summarise Trauma Informed Care: safety; trustworthiness; choice; collaboration; and empowerment. Unfortunately, these bear little relation to the content of a comprehensive and authoritative literature review on trauma endorsed by international researchers, professionals, and survivors of abuse.

The core problems of affect dysregulation, structural dissociation, somatic dysregulation, impaired self-development and disorganised attachment are likely to remain the foundation for clinicians working with survivors of complex trauma, regardless of the specific diagnosis or assessment and treatment methodologies in use. (Kezelman & Stavropoulos, 2012, p. 3)

Clearly, key aspects of Trauma Informed Care were lost in Keesler’s (2014) translation. The similarity between Keesler’s five pillars and Person-Centred Planning may have made it acceptable to change-resistant policy-makers. However, Rich et al. (2021) evaluation of 130 service leaders’ belief that they were implementing Trauma Informed Care found a disconnect between their perception of how well these organisations were performing Trauma Informed Care, their understanding of the key ideas, and their level of implementation. Significant barriers to implementation were high staff turnover and inadequate funds for training.

A recent scoping review (McNally et al., 2021) underlined the prevalence of trauma-generating adverse childhood experiences in the lives of people with intellectual disabilities, and reported positive outcomes from a range of psychotherapeutic approaches for individuals or small case series. However, such interventions require people to be living in psychologically secure situations with access to a trusted confidante, circumstances that elude far too many distressed people with intellectual disabilities. In our own clinical setting, colleagues trained in another trauma-related therapy, Eye Movement Desensitisation and Reprocessing, were only able to identify a small number of people who were suitable for it. A pre-condition for starting Eye Movement Desensitisation and Reprocessing therapy is that the distressed person needs to be living in a psychologically secure situation, but very few were. While it is an approach with considerable potential, McNally et al. (2021) concluding list of challenges for trauma informed assessment and intervention in intellectual disabilities indicates how much development remains to be done.

Staff stability

Attention must be given to continuity of relationships and, where this is not possible, to consistency of relational support. Many scandal inquiries into abusive services identified the resignation of senior managers, de-professionalisation, and high use of agency staff as contextual factors (Clegg, 2017). People whose chaotic emotions attract professional concern receive care that is disrupted by too many moves between services as well as high staff turnover and churn. We reiterate the point made earlier, that stability of care was identified as one of the top three priorities for services that support typically-developing children, but features nowhere in policy for children or adults with intellectual disabilities. Innovation and developing staff in place, rather than requiring them to move elsewhere in order to progress, is likely to reduce turnover – but we will only know that if it is monitored.

Conclusions

Each distressed person is unique. The complex combinations of social and embodied disadvantage that affect people with intellectual disabilities make imagination and creativity crucial. Positive Behaviour Support is the dominant intervention recommended in Anglophone cultures despite weak evidence that it creates enduring change. It appears to be held in place by non-epistemic factors: historical precedent, affinity with neoliberal principles, and the requirements of monitoring inspectorates. Although no single approach is likely to trump all others across such a heterogeneous population, new assessments and interventions informed by attachment theory are grounded in significant research evidence that shows promise. This needs to be implemented with fidelity, by appropriately trained and supported staff, if it is to fulfil its untapped potential for development and growth in the emotional lives of people with intellectual disabilities.

Acknowledgement

Our thanks to an anonymous reviewer for helpful detailed comments.

Disclosure statement

No potential conflict of interest was reported by the author(s).