Intellectual Disability Research Articles

Promoting multistep requesting through systematic instruction and facilitated iPad-based intervention with children with intellectual disability

A lack of multistep requesting among children with intellectual disability can be an indicator of complex communication and social challenges. This study aims to determine the effect of a systematic instruction (differential reinforcement, progressive time delay, and least-to-most prompting) using an iPad with the “GoTalk Now” app on the acquisition and maintenance of multistep requesting. Using a multiple-probe across-participants design, three children between the ages of nine and 10 diagnosed with intellectual disability participated in this study. The findings revealed that the intervention was effective in both the intervention and maintenance phases. In two participants, the change in performance occurred immediately, while in the other participant, it took more sessions to reach the acquisition criteria. Social validity data were obtained from participants’ teachers. Implications and future directions are discussed according to the findings.

Sensory Enhanced Interactive Storytelling Technique (SEIS-T): Supporting Active Communication Through Short, Multimodal Narratives

ABSTRACT Creating meaningful interaction can be challenging for communication partners of persons with intellectual disabilities and hearing impairment (IDHI). To elicit moments of interaction and communication, the sensory-enhanced interactive storytelling technique (SEIS-T) has been developed within clinical and educational practice for people with IDHI and their communication partners. SEIS-T uses custom-made storybooks, referential objects and augmentative and alternative communication (AAC). Although many positive communicative moments with SEIS-T have been mentioned by practitioners, scientific research regarding this approach is limited. The present study aimed to alleviate this by examining changes in communication patterns and engagement of children with IDHI over the course of 10 repeated SEIS-T sessions and comparing the results to regular storytelling sessions. Six children participated in a multiple-baseline study. An event-sampling method was applied to analyse videos of the reading sessions, with respect to the children’s verbal and nonverbal communicative acts (role, form and complexity), and their attention to the storytelling. Non-overlap of all pairs (NAP)-analysis was used to test differences between the baseline and intervention phase for each participant. Promising improvements were seen in the frequency and variety of communicative acts by the children and in their focused attention during storytelling, when employing the SEIS-T.

History and Perspective of LAMP-2 Deficiency (Danon Disease).

Danon disease, an X-linked dominant vacuolar cardiomyopathy and skeletal myopathy, is caused by a primary deficiency of lysosome-associated membrane protein-2 (LAMP-2). This disease is one of the autophagy-related muscle diseases. Male patients present with the triad of cardiomyopathy, myopathy, and intellectual disability, while female patients present with cardiomyopathy. The disease's leading cause of death is heart failure, and its prognostic factor is cardiomyopathy. Pathologically, the disease is characterized by the appearance of unique autophagic vacuoles with sarcolemmal features (AVSFs). Twenty-six families have been found to have this disease in Japan. It has been over 40 years since the first report of this disease by Danon et al. and over 20 years since the identification of the causative gene, LAMP2, by Nishino et al. Although the pathogenetic mechanism of Danon disease remains unestablished, the first clinical trials using AAV vectors have finally begun in recent years. The development of novel therapies is expected in the future.

Epilepsy in a Moroccan patient with Pitt-Hopkins syndrome

Background : Pitt-Hopkins syndrome (PTHS) is a heterogeneous neurodevelopmental disorder, characterized by intellectual disability, distinctive facial features, and significant autonomic nervous system dysfunction. It is caused by variants in the transcription factor Tcf4. Methods/Observation : We report the first case of PTHS in Morocco, involving a 3-year-old child who presents with the typical features of PTHS, recurrent epilepsy, and a posterior fossa malformation consistent with Dandy-Walker syndrome, along with complete agenesis of the corpus callosum. Standard karyotype analysis and CGH-array confirmed the diagnosis, revealing a de novo terminal deletion of 27.894 kb on the long arm of chromosome 18. High-throughput sequencing is currently underway. Conclusion : Once PTHS is clinically suspected, the diagnosis should be confirmed through molecular genetic testing of the Tcf4 gene. Keywords : Pitt-Hopkins Syndrome, 18q deletion, Tcf4, de Novo, epilepsy.

Uncovering etiologic genes through whole exome sequencing in pediatric epilepsy: A case series from Thailand

Introduction Developmental and epileptic encephalopathy (DEE) is characterized by seizures that are difficult to control for a long time and affect development in children who are previously normal or delayed. Therefore, children with DEE should be diagnosed promptly because certain types of the disease respond well to specific medications. In developing countries with limited universal coverage for whole exome sequencing (WES), identifying key clinical features in this patient group will help us make more accurate selections for investigations. The purpose of this study was to determine the prevalence of WES and its common clinical features in children with epileptic encephalopathy. Methods Ten volunteers aged 0-15 years were diagnosed with epilepsy with two or more symptoms of drug-resistant epilepsy, developmental delays, and abnormal nervous system/or dysmorphic features, and their electroencephalogram (EEG) showed abnormal background or specific patterns of epileptiform discharges. These were subjected to WES for the standard > 400 genes in the epilepsy panel. Results The established diagnosis was 4/10. Two known pathogenic variants, SCN2A and PCDH19. Two novel pathological variants, CHD2 and SCN1A. These are drug-resistant epilepsy, which is initially difficult to control and cannot stop antiseizure medications. Out of the 2/4 had moderate to severe intellectual disability. 3/4 had generalized epileptiform discharge activities. Conclusions This study showed a similar detection rate to that of a previous WES study. All the patients had difficult-to-treat epilepsy. For those who have not found abnormalities with the same clinical symptoms, further examinations using other methods should be conducted.

Developmental and epileptic encephalopathy 56 due to YWHAG variants: 12 new cases and review of the literature

Background and objectivesDevelopmental and epileptic encephalopathy 56 (DEE-56) is caused by pathogenic variants in YWHAG and is characterized by early-onset epilepsy and neurodevelopmental delay. This study reports on a cohort of DEE-56 individuals, correlating antiseizure medication usage and comorbidities, to aid in understanding disease evolution. MethodsWe analyzed data from thirty-nine individuals aged 3–40 years with YWHAG variants, including 12 previously unreported individuals (2 of these with recurrent distal 7q11.23 deletions) and 27 previously published cases (21 families, including 3 adult individuals reported in a family case). Our assessments encompassed clinical, radiological, and genetic evaluations. All procedures adhered to standardized protocols for patient approvals, registrations, and data collection. ResultsIndividuals with YWHAG variants exhibited variable psychomotor delay, with the majority experiencing mild intellectual disability. Early-onset seizures, particularly febrile seizures, were common, with various seizure types reported. Valproic acid has emerged as an effective antiseizure medication. Movement disorders were present in a subset of individuals, primarily manifesting as ataxia and tremor. Comorbidities such as autism spectrum disorders and attention deficit-hyperreactivity disorder were observed in a proportion of individuals. We identified a novel YWHAG variant (c.634_645del/p.Asn212_Ser215del) and expanded the genotypic spectrum of the disease. ConclusionsWe provide insights into the clinical, radiological, and genetic features of YWHAG-related epileptic encephalopathy. Despite mild clinical symptoms, affected individuals face challenges in daily functioning, underscoring the need for comprehensive care. Valproic acid has been used for seizure control with variable results.

A thin line between consent and abuse - Reflections on sexual experiences among Swedish young adults with intellectual disabilities.

Research shows that young adults with intellectual disabilities struggle to understand the social codes embedded in sexual situations. This may lead to an incomprehension of sexual consent, or when consenting to sex may lead to abuse. This qualitative study aimed to gain an in-depth understanding of sexual experiences and perceptions about sexual consent among Swedish young adults with intellectual disabilities. The data comprise 22 semi-structured interviews with young adults aged 18-35 with intellectual disabilities, thematically analyzed using sexual script theory as a theoretical framework. Four themes emerged from the analysis: Setting the sexual scene, Sexual self-awareness, Sexual communication and the necessity of clarification and Striving for a balance. The results show that the participants had a variety of sexual experiences and challenges associated with sexual consent, but also an agency that favors sexual situations. Further research is necessary to understand the complexities of sexual consent in this population.

Exploring Large Language Models to generate Easy to Read content

Ensuring text accessibility and understandability are essential goals, particularly for individuals with cognitive impairments and intellectual disabilities, who encounter problems accessing information across various mediums such as web pages, newspapers, online administrative tasks, or health documents. Initiatives like Easy to Read and Plain Language guidelines aim to simplify complex texts; however, standardizing these guidelines remains challenging and often involves manual processes. This work presents an exploratory investigation into leveraging Artificial Intelligence (AI) and Natural Language Processing (NLP) approaches to simplify Spanish texts into Easy to Read formats, with a focus on utilizing Large Language Models (LLMs) for creating accessible texts, especially in generating Easy to Read content. The study contributes a parallel corpus of Spanish adapted for Easy To Read format, which serves as a valuable resource for training and testing text simplification systems. Additionally, several text simplification experiments using LLMs and the collected corpus are conducted, involving fine-tuning and testing a Llama2 model to generate Easy to Read content. A qualitative evaluation, guided by an expert in text adaptation for Easy to Read content, is carried out to assess the automatically simplified texts. This research contributes to advancing text accessibility for individuals with cognitive impairments, highlighting promising strategies for leveraging LLMs while responsibly managing energy usage.

Heterozygosity for neurodevelopmental disorder-associated TRIO variants yields distinct deficits in behavior, neuronal development, and synaptic transmission in mice.

Genetic variants in TRIO are associated with neurodevelopmental disorders (NDDs) including schizophrenia (SCZ), autism spectrum disorder (ASD) and intellectual disability. TRIO uses its two guanine nucleotide exchange factor (GEF) domains to activate GTPases (GEF1: Rac1 and RhoG; GEF2: RhoA) that control neuronal development and connectivity. It remains unclear how discrete TRIO variants differentially impact these neurodevelopmental events. Here, we investigate how heterozygosity for NDD-associated Trio variants - +/K1431M (ASD), +/K1918X (SCZ), and +/M2145T (bipolar disorder, BPD) - impact mouse behavior, brain development, and synapse structure and function. Heterozygosity for different Trio variants impacts motor, social, and cognitive behaviors in distinct ways that align with clinical phenotypes in humans. Trio variants differentially impact head and brain size with corresponding changes in dendritic arbors of motor cortex layer 5 pyramidal neurons (M1 L5 PNs). Although neuronal structure was only modestly altered in the Trio variant heterozygotes, we observe significant changes in synaptic function and plasticity. We also identified distinct changes in glutamate synaptic release in +/K1431M and +/M2145T cortico-cortical synapses. The TRIO K1431M GEF1 domain has impaired ability to promote GTP exchange on Rac1, but +/K1431M mice exhibit increased Rac1 activity, associated with increased levels of the Rac1 GEF Tiam1. Acute Rac1 inhibition with NSC23766 rescued glutamate release deficits in +/K1431M variant cortex. Our work reveals that discrete NDD-associated Trio variants yield overlapping but distinct phenotypes in mice, demonstrates an essential role for Trio in presynaptic glutamate release, and underscores the importance of studying the impact of variant heterozygosity in vivo.

Chromosome 15q11-q13 Duplication Syndrome: A Review of the Literature and 14 New Cases.

The 15q11.2q13 chromosomal region is particularly susceptible to chromosomal rearrangements due to low-copy repeats (LCRs) located inside this area. Specific breakpoints (BP1-BP5) that lead to deletions and duplications of variable size have been identified. Additionally, this specific region contains several imprinted genes, giving rise to complex syndromes (Prader-Willi, Angelman and 15q11-q13 duplication syndromes). 15q11.2-q13 duplication syndrome has been associated with neurodevelopmental disorders (hypotonia, developmental delay, speech delay and seizures) and ASD but is characterized by variable expressivity and reduced penetrance, features that make genetic counseling a complex procedure especially in prenatal cases. In the present study, a total of 14 pre- and postnatal cases were diagnosed as 15q11.2q13 duplication carriers using Affymetrix CytoScan 750 K array-CGH, and our analysis combined these with 120 cases existing in the literature. The inheritance pattern of the cases of this study is unknown, but as a review of the literature revealed, 62.96% of the affected carriers inherited the duplicated area from their mother. The combined results of this analysis (the present study and the literature) show that in the majority of the cases, the phenotype is a compound phenotype, with clinical characteristics that include ASD, intellectual disability, developmental delay and an absence of speech. The aim of this paper is to deliver new possibilities to genetic counseling that can be provided in prenatal and postnatal cases as the phenotype of 15q11.2q13 microduplication carriers cannot be fully predicted; so, clinical diagnoses should be a combination of molecular findings and clinical manifestations that are present.

Consequences of trisomy 21 for brain development in Down syndrome.

The appearance of cognitive deficits and altered brain morphology in newborns with Down syndrome (DS) suggests that these features are driven by disruptions at the earliest stages of brain development. Despite its high prevalence and extensively characterized cognitive phenotypes, relatively little is known about the cellular and molecular mechanisms that drive the changes seen in DS. Recent technical advances, such as single-cell omics and the development of induced pluripotent stem cell (iPSC) models of DS, now enable in-depth analyses of the biochemical and molecular drivers of altered brain development in DS. Here, we review the current state of knowledge on brain development in DS, focusing primarily on data from human post-mortem brain tissue. We explore the biological mechanisms that have been proposed to lead to intellectual disability in DS, assess the extent to which data from studies using iPSC models supports these hypotheses, and identify current gaps in the field.

Mapping the pathway and support offered to children with an intellectual disability referred to specialist mental health services in the UK.

This survey of 66 specialist mental health services aimed to provide an up-to-date description of pathways of care and interventions available to children with an intellectual disability referred for behaviours that challenge or with suspected mental health problems. Overall, 24% of services made contact with a family at referral stage, whereas 29% contacted families at least once during the waiting list phase. Only two in ten services offered any therapeutic input during the referral or waiting list stages. During the active caseload phase, services offered mostly psychoeducation (52-59%), followed by applied behaviour analytic approaches for behaviours that challenge (52%) and cognitive-behavioural therapy (41%). Thirty-six per cent of services had not offered any packaged or named intervention in the past 12 months. With increasing waiting times for specialist mental health support, services need to consider increasing the amount of contact and therapeutic input on offer throughout all stages of a child's journey with the service.

Stitching Together a PAR Project: “Work Active”—Supporting the Journey to Work for People With an Intellectual Disability

Critically reflecting on research practice can be an uncomfortable process for any researcher as you expose actions, and decision-making, reflect on some of the research assumptions you may have fallen into, and acknowledge your limitations. Yet, engaging in reflexive practice keeps us in check and is particularly important for researchers exploring the experiences of marginalization and oppression. This article presents our reflections on “Work Active,” a participatory action research (PAR) project that sought to improve employment outcomes for people with intellectual disability (ID). Although a great deal of literature suggests that the underlying intent of PAR is emancipatory through the mainstays of collaboration, inclusivity, and participation; however, there remain questions about whether emancipation can be truly achieved. We present our experiences of “stitching together” our service provider-led PAR project to reveal some of the challenges, points of tension, and our adaptions as we navigated the “curve balls” of undertaking a PAR project.

Access to dental care among individuals with intellectual and developmental disabilities in India: A scoping review.

Individuals with intellectual and developmental disabilities (IDDs) face numerous challenges in accessing dental care. Despite difficulties, more evidence exploring difficulties among this cohort in India is needed. This study aims to conduct a scoping review of articles published in India exploring access to dental care among individuals with IDD. We followed the Arksey O'Malley framework for scoping reviews and the PRISMA guidelines for reporting studies. Findings were analyzed based on Levesque's framework for access. Seventeen articles were collated from five databases. The perceived need for dental care was low, and dental visits were mainly need-based and infrequent. Knowledge regarding dental care did not translate to dental visits. Patient-related barriers were cost, transportation difficulties, fear, lack of dentist skills, patient behavior, and cooperation. From the providers' perspective, most dentists were willing to treat but noted infrastructural and knowledge-based limitations. Access to dental care was limited due to infrastructure constraints and a lack of dentist training. Caregivers and individuals with IDD did not prioritize dental health, faced communication barriers, and were afraid of dental procedures. It is important to improve preventive dental care and raise awareness among caregivers of individuals with IDD in India. Training dentists and incorporating special care dentistry into the standard dental curriculum will improve access.

Association between hallucinations and sensory processing difficulties in children and adolescents.

Hallucinations are serious symptoms that can lead to high levels of distress, functional impairment, and increased risk of suicide in both adults and children. However, their etiology and treatment remain unclear. Hallucinations and sensory processing difficulties (SPDs) are associated with various psychiatric disorders, including mood, anxiety, and post-traumatic stress disorder. This study aimed to investigate the potential association between hallucinations and SPDs in a pediatric population. We conducted a cross-sectional study with 335 children aged 6-18 years who visited the child psychiatry outpatient clinic at Osaka Metropolitan University Hospital between April 2020 and March 2023 and continued treatment for at least three months. After excluding those with intellectual disabilities or uncontrolled epilepsy, 304 participants were included in the analyses. The presence of hallucinations was assessed through interviews with the children and their parents. SPDs were evaluated using the Short Sensory Profile. Binomial logistic regression analysis was conducted to assess the association between hallucinations and SPDs, adjusting for age, sex, autism spectrum disorder, socioeconomic difficulties (low-income, single-parent households), and the presence of mood and anxiety disorders. Hallucinations were present in 64 children (21%). Logistic regression analysis showed a significant positive association between SPDs and hallucinations, even after adjusting for age, sex, autism spectrum disorder, socioeconomic difficulties, and the presence of mood and anxiety disorders (odds ratio, 1.02; 95% CI, 1.008-1.036; p = 0.002). The results of this study suggest a potential association between hallucinations and SPDs in pediatric patients. Further prospective studies are needed to explore the causal relationship between these factors and determine whether interventions for SPDs can alleviate hallucinations in children.

Impact of Socio-Demographic Factors on Quality of Life and Coping Strategies of Children with Different Disabilities.

Background and Objectives: Children with disabilities face unique challenges that can affect their well-being and quality of life (QOL). This study aimed to assess the QOL and coping strategies adopted by children with disabilities and explore how socio-demographic factors influence QOL and coping strategies. Materials and Methods: This cross-sectional study, which was conducted in Saudi Arabia with children aged 6 to 18 years, used a stratified random sample to ensure representation from a variety of demographic groups. Short Form-12 (SF-12) was used to assess the QOL in the sample population. The Brief COPE Inventory was used to examine coping strategies among the children. One-way analysis of variance was applied to examine differences in the QOL, coping strategies scores, and demographic variables. Multiple regression analyses were performed to examine the role of demographic variables in predicting QOL and p value was considered statistical significance at p < 0.05. Results: The results of the study clearly revealed significant differences between the mean scores of QOL for gender, age, and type of disability, duration of disability, education qualification, family status, family occupation, and housing status. Female participants showed better QOL in physical functioning than their male counterparts. Children with intellectual disability reported better QOL in general health, vitality, social functioning, and mental health. Participants with seven to eight years of disability reported higher scores in physical functioning, vitality, and mental health. Children whose parents were working in private agencies and living in rented houses scored higher on the general health aspects of quality of life. The findings also revealed that the duration of the disability was a significant predictor of the QOL. The mean scores of different dimensions of coping strategies clearly revealed that male participants used dysfunctional coping (p < 0.01), as compared to problem-focused and emotional-focused coping while female children relied more on emotional-focused coping. Emotion-focused coping was significantly higher in participants with visual (p < 0.01), learning (p < 0.01), and intellectual disabilities (p < 0.01). Dysfunctional coping scores were higher among children with auditory disabilities (p < 0.01) and multiple disabilities (p < 0.01). Conclusions: This study highlights the significance of demographic factors in understanding and improving the well-being of a diverse population of disabled juveniles. It offers valuable insights into the subtle factors affecting quality of life. Future interventions and policies can leverage these findings to enhance the quality of life of individuals with disabilities and to foster a more supportive and inclusive approach.

Fitness to stand trial: 415 consecutive defendants assessed by a New Zealand forensic psychiatry service.

New Zealand defendants found unfit to stand trial following a Court-ordered forensic mental health assessment cannot be detained in prison and must either be released, or made subject to a mental health or intellectual disability order. There is increasing awareness of the need to identify these people and protect their rights. Retrospective audit of 8years of Court-ordered health assessor reports addressing fitness to stand trial prepared by a New Zealand regional forensic mental health service with a catchment area of around 850,000. Between 2014 and 2022, Courts referred 415 defendants for assessment of fitness to stand trial. The number of reports requested increased by 20% between 2014 and 2022. Report subjects were 81% male and had a median age of 31. Commonest primary diagnoses were psychotic disorders (37%), intellectual disability (13%) and acquired neurocognitive disorders (15%). Few people with foetal alcohol spectrum disorder were identified. Despite the increase in assessments, the number of defendants considered unfit by report writers remained stable over time. The increasing number of referrals for assessment of fitness to stand trial has resourcing implications for forensic mental health services.

Impact of LEGO® Based Therapy on Skills Development and Quality of Life in People with Neurodevelopmental Disorders.

This research sets out to evaluate the impact of LEGO® Based Therapy on the development of skills and quality of life for people with neurodevelopmental disorders, as well as for those close to them. Widely used in the United States and the United Kingdom for almost 20 years, LEGO® Based Therapy was developed by Daniel Le Goff, psychologist licensed in Florida and New Jersey who has practiced for over 20 years with children, adolescents and adults with developmental disabilities, including autism, Asperger's syndrome and congenital disabilities, as well as acquired and traumatic brain injuries. Daniel Le Goff has extensive experience as a consultant and expert witness, as well as in direct clinical services, including applied behaviour analysis, cognitive behaviour therapy and cognitive rehabilitation. In 2008, Gina Gómez de la Cuesta completed her PhD at the Centre for Autism Research at the University of Cambridge, where she led and evaluated LEGO®® Based Therapy under the supervision of Daniel LEGO®ff, Simon Baron-Cohen and Ayla Humphrey. She is a teacher and psychologist by training and has worked at the National Autistic Society as Head of Action Research. She founded Play Included in 2018, with support from the Cambridge Social Ventures incubator programme, University of Cambridge to support children's development through play and promote LEGO®Therapy. Initially designed to improve the social skills of people with autism spectrum disorders but no intellectual disabilities, its effectiveness has been demonstrated by studies targeting this specific population. However, no research has yet been carried out in France on its application to a wider population, including various forms of neurodevelopmental disorder. Furthermore, existing studies have not considered the impact on the quality of life of beneficiaries and their families, which this thesis sets out to examine.

Individual child factors affecting the diagnosis of attention deficit hyperactivity disorder (ADHD) in children and adolescents: a systematic review.

Attention deficit hyperactivity disorder (ADHD) is a prevalent condition characterised by patterns of inattention, hyperactivity, and impulsivity. This systematic literature review aims to identify the child clinical and sociodemographic factors related to the detection and diagnosis of ADHD in children and adolescents, given concerns about delays or failures in identifying ADHD as well as over-diagnosis, hindering appropriate and timely support for children and families. Through electronic and manual searches of peer-reviewed and grey literature, 5852 articles were identified and subjected to two stages of screening by independent reviewers. Due to the heterogeneity in study methods, a narrative approach was used to summarise study findings. Forty-one studies meeting eligibility criteria revealed sixteen child-related factors influencing the ADHD diagnostic process. These factors include ADHD subtype, ADHD symptom severity, comorbid mental disorders, behavior problems, internalizing symptoms, functional impairment, social and cognitive functioning, physical health, gender, age, relative age, race/ethnicity, socio-economic status, insurance coverage, residence urbanicity, and family structure. While the impact of many of these factors on ADHD diagnosis was inconsistent due to the substantial diversity in study designs and context, certain patterns emerged. Meeting the criteria for the inattentive subtype, lower functional impairment, female gender, Black or Latinx ethnicity, and being relatively young for their grade were consistently found to be associated with a delayed or absent ADHD diagnosis. Further research is needed to explore the intricate relationships between these child-level variables and their implications for ADHD recognition, referral, and evaluation, especially outside the USA.

Predecessors of Behavioural Initiatives by People With Profound Intellectual Disabilities During Their Interactions With Support Staff: An Exploratory Microanalytical Analysis

ABSTRACTBackgroundInitiating meaningful moments of interaction with people with profound intellectual disabilities can prove to be difficult for support staff. Exploring the behaviour of support staff that precedes the initiations of behaviour by people with profound intellectual disabilities helps to shed light upon the potential facilitating effects of staff behaviour.MethodsThree meaningful moments of interaction between support staff and people with profound intellectual disabilities that were recorded were then microanalytically coded, along with the initial onset of these moments. Each behaviour initiated by people with profound intellectual disabilities was examined to see what specific behaviour by the support staff began precedingly.FindingsThe most frequently displayed ‘staff–client’ behavioural sequences were ‘looking’, ‘moving with head’, ‘moving with arms’ or ‘vocalisation’ of support staff followed by the person with profound intellectual disabilities ‘moving with head’, the staff member ‘moving with arms’ followed by the person with profound intellectual disabilities ‘moving with arms’ and the staff member ‘touching’ followed by the person with profound intellectual disabilities ‘vocalising’. These behavioural sequences occurred less frequently during meaningful moments of interaction in comparison to their onset.ConclusionsIt is important that support staff are cognisant of all the (subtle) behavioural changes in people with profound intellectual disabilities (especially movements with their head) to discern potential behavioural responses. Moreover, they should be cognisant of their own behaviour, insofar as the conscious use of behaviour may facilitate the development of meaningful interactions.