Editorial for the special issue ‘Intellectual Disabilities and Mental health: Assessment and Treatment’

Today, it is accepted that people with intellectual disabilities (IDs) may develop the full range of mental disorders (Bhaumik and Alexander 2020) and are in need of a range of mental health services. The diagnosis of ID includes two core criteria; an IQ below 70, and impaired adaptive skills. However, a third factor, dysfunctional regulation of emotions, is also present in people with ID. Dysfunctional regulation of emotions is an important area of knowledge for clinicians who meet people with ID who develop mental disorders, because emotional dysfunctions causes a number of challenging behaviours in people with impaired language skills (O’Brien 2020). A number of factors are assumed to contribute to the developmental of mental disorders in people with ID. The literature highlights biological factors such as genetic syndromes and chromosomal deviations, as well as environmental factors like impaired social functioning, low level work inclusion and negative life events. These factors may explain the elevated prevalence numbers of mental disorders in people with ID (Platt et al. 2019).

Assessment of mental disorders in people with ID is complicated due to impaired self-reporting skills. Furthermore, people with ID have an overrepresentation of co-morbid physical conditions, and challenging behaviour as mentioned above. Both may overshadow mental disorders. Thus, identification of mental disorders relies more on observable equivalents to conventional symptoms. Furthermore, severe dysfunctional emotional regulation, especially related to anxiety symptoms, may wrongly be attributed to behaviour problems. To overcome these obstacles in the diagnostic process, a number of diagnostic tools and checklists have been developed (Helverschou et al. 2020). Additionally, an adapted version of the DSM 5 has been developed for people with mild/moderate, and severe/profound ID (Fletcher et al. 2016).

Treatments of mental disorders in the ID population have, for the most part, been adapted from methods used for people in the general population (Bhaumik and Alexander 2020). Regarding psychotropic medication, a larger number of clinical trials including trials with randomized controlled samples, have been conducted compared to trials on psychological therapies. However, an increasing number of studies on psychological treatments are being published, and some therapies seem to be promising. In this special issue, no articles about psychotropic medication are included.

This special issue on mental health in ID encompasses three studies on assessment, and six studies on psychological treatment including two studies on services and one study on caregivers’ experiences. The first paper is a selective review article and the last paper is a Points of View articles. The remaining seven articles are original research papers.

Assessment of schizophrenia (SCZ) in people with autism spectrum disorder (ASD) is complicated due to confounding symptoms between ASD and SCZ. These confounding factors are aggravated when the patient has ID. A selective review encompassing clinical studies was conducted to identify behavioural equivalents when assessing SCZ in individuals with ASD and ID (Bakken 2021). Eight relevant articles were analysed for the use of behavioural equivalents in clinical settings. The results showed that especially disorganized speech and behaviour and negative symptoms are observable in patients with SCZ and ASD/ID. Hallucinations are no directly observable, but ‘hallucinatory behaviour’ may be interpreted as hallucinations when observed concurrently with other SCZ symptoms. Additionally, age of onset and marked impaired global functioning compared to habitual functioning may constitute a diagnosis of SCZ in ASD.

Mental disorders in people with ASDs co-morbid to ID may be especially challenging related to both identification and treatment compared to those with ‘ID only’. A Norwegian group tested the psychometric properties of the Psychopathology in Autism Checklist (PAC) which is among the very few instruments specifically developed for this group of individuals (Helverschou et al. 2021). They explored the psychometric properties of the PAC (i.e. criterion validity, specificity, sensitivity and predictive values), comparing scores with assessments on the Aberrant Behavior Checklist (ABC). Results indicated a significant correlation with the ABC, further supporting the validity of the PAC. Furthermore, the PAC predicted final diagnoses at referral in a clinical sample in a multi-center study.

The paper by Kildahl and colleagues focusses on anxiety disorders are highly prevalent in individuals with ASD but knowledge is limited regarding the identification and treatment of people with severe or profound ID (Kildahl et al. 2021). A case study highlighted the complexity of mental health assessment can be in patients with ID and co-morbid ASD. In an adolescent male with ASD, severe ID and self-injurious behaviour (SIB) was diagnosed with a co-occurring anxiety disorder. SIB was previously not at any point understood to be related to a mental disorder. The case study included a multimodal and multidisciplinary assessment approach. Following changes in care strategies attempting to incorporate the understanding of anxiety/trauma as contributing to SIB, a reduction of SIB was observed, and this reduced frequency was maintained when the patient was discharged from the inpatient setting.

Patients with ID in psychiatric services are rarely asked about their experiences when admitted to inpatient units. A study by Sageng and co-workers addresses patients’ experiences and was conducted in a specialized inpatient unit for patients with ID (Sageng et al. 2021). A selected sample of ten adults with comorbid mental illness and ID were recruited for a qualitative interview study. The patients were interviewed by two experienced clinicians, and interviews were analysed using directed content analysis. Patients’ experience of their relationships with ward staff seemed central to their experiences of several aspects of mental health nursing. Feeling safe, contained, and validated, were further important aspects. However, the patients seemed to have little influence on treatment choices and did not report participating in shared decision-making. The patients’ answers in this study are in line with previous research on ward atmosphere for patients in the general population. Relations between patients and therapists are the core element for patient satisfaction.

ASD is often associated with ID, and mental health issues. An Austrian group investigated a combined psycho-educative and music and dance/movement intervention (Bergmann et al. 2021), the Autism-Competence-Group (AutCom). AutCom includes 16 structured sessions of 90 min in length to foster social and emotional competencies. Practicability and appropriateness were measured based on participation frequency and patient satisfaction (CSQ-8). Efficacy was assessed in a pre-post design (N = 12) based on self- and third-party assessment with a control group matched by gender and level of ID. A participation rate of 86% indicated practicability; high CSQ-8 scores (M = 30 of max. 32) indicated appropriateness. Significant improvement was found in social competence compared to the control group and emotional competence in the pre-post self-assessment on the AutCom questionnaire.

Hurley and Bakken highlights that psychosocial treatments of depression in people with ID presents challenges, because people with ID often cannot consent to various treatments, hence clinicians and family members must be involved and use their best judgment. A selected review was conducted to highlight the progress in psychosocial treatment of depression within the last four decades (Hurley and Bakken 2021). Nine articles included cognitive behaviour therapy (CBT), computer-assisted CBT, mindfulness-based cognitive therapy, exercise therapy, behaviour activation, self-help intervention, dialectal behaviour therapy, and psychodynamic/psychoanalytical therapy. There were no articles on mental health nursing. Adaptions included smaller groups (in group intervention), visual material, simplifying of concepts, longer duration/more sessions, more practical help, more repetitions when learning new skills, more guidance, professional caregiver/family involvement, and individual support within group interventions.

In spite of a higher vulnerability of developing mental health problems for people with ID, such persons have poorer accessibility to mental health services. Ee and colleagues established a specialist mental health service for adults with ID in Singapore (Ee et al. 2021). A study was conducted to explore the experiences of different stakeholders (mental health professionals, family carers and service users) regarding the provision of specialist mental health services for people with ID. Mental health professionals shared their views about their lack of skills and knowledge, as well as feelings of uncertainty and fear when working with this population. Family carers found it challenging to manage the mental health problems of their relatives in the community and often relied on the support and advice of mental health professional during the treatment process. Service users found that their choice and autonomy were restricted during inpatient admission and yearned to be part of their community through work and having social relationships.

A study from Kuwait aimed to explore how caregivers of people with Down syndrome (DS) believe caring had an impact on their own lives (Ahmed 2021). A qualitative exploratory study was conducted with 21 caregivers of people with DS. Caregivers struggled to accept the diagnosis initially that led them to search for answers to many of their concerns about raising a person with DS. For the caregivers, who mostly comprised of mothers, dealing with health conditions that persons with DS suffered from was initially difficult. Caring for these individuals led to heavy impact upon their caregivers’ own lives who took extraordinary efforts to cope with the burden. Seeking quality education for the people with DS and participation in social activities was also challenging, and the caregivers believed that better services, facilities, and benefits for the families of people with DS may help them better cope with the socioeconomic and psychological burden.

An Austrian group presents a therapeutic living community model including adults with ID and additional severe hearing impairments (Fellinger et al. 2021). The model arose from experiences of consequences of long-lasting communicative and social deprivation and exclusion for adults with ID and additional deafness. To improve social skills and at the same time avoid mental health problems, a special emphasis on social communication development, has been implemented at three different sites in Austria. Through the development of the therapeutic living communities and subsequent observations, the model is suggested to describe the mediating role of signed language and social communication skills in mental health outcomes for users with increased mental health risk factors, as described above.

Concluding remarks

I have been pleased to be Guest Editor of this Special Issue, which focusses on a very important topic, affecting people with ID across both community and clinical setting. Despite the variety of different topics and methods, the articles in this special issue highlight the levels of complexity in mental health services for people with ID. There is a need for clinical diagnoses based on a multimodal, multidisciplinary assessment and treatment, involving family members. Furthermore, there is a need for more research including the service users. It might be that clinicians are concerned with the efficacy of different treatment methods, while service users are concerned with the working alliance and professional relationships with their therapists. Finally, most studies on assessment and treatment of mental disorders in people with ID include people with mild or moderate ID. Hence, there is still a need for development of especially treatment for people with more severe ID.

Note from the Editors

The editors of the International Journal of Developmental Disabilities (IJDD) would like to thank the guest editor, Trine Lise Bakken, for conceiving and organising this timely special issue on ‘Intellectual Disabilities and Mental health: Assessment and Treatment’ and for putting together papers on different facets of these issues. We would also like to thank the individual contributors, authors, and reviewers of the manuscripts. This special issue highlights the complexity in mental health services for people with different kinds of ID. Some of these publications will be presented in a workshop organised by Trine at the workshop at the 13th European Association for Mental Health in Intellectual Disability (EAMHID) Congress, to be held in Berlin, Germany, 23–25 September, 2021 Arturo Langa and Brian Salmons.