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Psychiatric disorders in individuals with co-occurring autism spectrum disorders (ASD) and intellectual disability (ID) are common, but diagnosis presents many challenges. The Psychopathology in Autism checklist (PAC) is among the very few instruments specifically developed for this group of individuals. The psychometric properties of the PAC (i.e. criterion validity, specificity, sensitivity and predictive values) were explored by comparing scores with assessments on the Aberrant Behavior Checklist (ABC) and examining how well assessment by the PAC at referral predicts final clinical diagnoses. Results indicated a significant correlation with the ABC, further supporting the validity of the PAC. Sensitivity and Specificity for specific diagnoses were variable, although positive predictive value for "any diagnosis' was relatively high. The study confirms the potential value of the PAC as a screening checklist but highlights the need for clinical diagnosis to be based on a multimodal, multidisciplinary assessment.

Introduction: Anxiety disorders are highly prevalent in individuals with autism spectrum disorder (ASD), but knowledge is limited regarding identification and treatment of these disorders in individuals with ASD and more severe levels of intellectual disability (ID). The current case study aims to explore and describe the inpatient, psychiatric assessment in an adolescent male with ASD, severe ID and self-injurious behaviour (SIB) who was diagnosed with a co-occurring anxiety disorder. The study further aims to explore the implications of this diagnosis for subsequent intervention and care, including management of SIB. Materials and methods: Case study including multimodal, psychiatric assessment and subsequent intervention. Results: 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. Conclusions: Though no causal inferences are possible, these experiences indicate that further research is needed regarding possible associations between SIB and anxiety in individuals with ASD, including implications for treatment. Experiences from the current case further indicate that it is possible to recognize and diagnose anxiety disorder in complex cases involving ASD, severe ID, limited verbal language skills, and severe SIB.

Phelan-McDermid syndrome (PHMDS)/22q13.3 deletion syndrome is a rare genetic disorder associated with autism spectrum disorder (ASD), intellectual disability (ID), and bipolar disorder. While numerous cases have been reported describing successful pharmacological treatment of bipolar disorder in PHMDS, there is currently little guidance available on how to organize and execute such treatment. The aim of the current case study was to explore how pharmacological treatment of bipolar disorder in PHMDS may be organized and evaluated in an outpatient setting. Through a complex process of try and fail, including systematic evaluation of any change to the intervention and never implementing more than one change at the time, the patient gradually improved, regaining his communicative and adaptive skills. Four years passed from referral to this result was achieved. Organizing assessment and treatment as a collaborative effort involving specialized mental health professionals, professional caregivers and the patient's family proved feasible. Many of the challenges present in assessment of psychiatric disorder in individuals with ASD and ID are likely to be present also in evaluation of treatment effects, particularly in disorders where symptoms occur in phases. The approach described in the current paper may contribute to reducing the impact of these challenges.

Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specific aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems. Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC). Results: Patients showed significant (p < .001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no significant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed significant (p < .01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3. Discussion: The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area.

Background Individuals with autism spectrum disorder (ASD) and intellectual disability (ID) are at increased risk of potentially traumatic events and may be at increased risk of post-traumatic stress disorder (PTSD). However, knowledge regarding identification of PTSD in this population is limited. The aim of this study was to investigate clinical experience regarding PTSD and trauma assessment in individuals with co-occurring ASD and ID. Method Interpretative phenomenological analysis was used to explore experiences of identifying PTSD in this population among 18 mental health clinicians working with ASD and ID. Results Informants viewed PTSD in individuals with ASD and ID as equivalent to PTSD in the general population, but with causes and expressions potentially differing. Several factors were described to contribute to challenges in identification. Conclusions Trauma may have severe impact in individuals with ASD and ID. Multidimensional, individualized assessment strategies seem necessary to recognize PTSD or trauma-related symptoms in this population.

Influence from bias is unavoidable in clinical decision-making, and mental health assessment seems particularly vulnerable. Individuals with intellectual disabilities have increased risk of developing co-occurring mental disorder. Due to the inherent difficulties associated with intellectual disabilities, assessment of mental health in this population often relies on a different set of strategies, and it is unclear how these may affect risk of bias. In this theoretical paper, we apply recent conceptualisations of bias in clinical decision-making to the specific challenges and strategies in mental health assessment in intellectual disabilities. We suggest that clinical decision-making in these assessments is particularly vulnerable to bias, including sources of bias present in mental health assessment in the general population, as well as potential sources of bias which may be specific to assessments in this population. It follows that to manage potential bias, triangulating information from multi-informant, multi-method, interdisciplinary assessment strategies is likely to be necessary.

Requests for pathological demand avoidance diagnoses have increased over recent years but pathological demand avoidance remains a controversial issue. We undertook a systematic review of peer-reviewed studies of pathological demand avoidance, using standardised appraisal and synthesis methods, to assess how pathological demand avoidance is identified and to explore the relationships between pathological demand avoidance, autism and other developmental/psychiatric disorders. A search of PsycINFO/PubMed/MEDLINE/Embase identified 13 studies meeting inclusion criteria. Narrative synthesis was chosen due to methodological heterogeneity of the identified studies. Autistic children/adolescents constituted the majority of participants in most studies. Most studies provided clearly defined inclusion criteria together with adequate descriptions of participants and study settings. Almost all studies relied on the parental report of pathological demand avoidance symptoms/diagnosis. Identification of pathological demand avoidance in all studies seemed to be, directly or indirectly, based on the criteria developed by Newson et al. While eight studies used objective criteria for the identification of pathological demand avoidance, the measures used have methodological limitations. Though associations with anxiety have been reported, few studies took account of possible relationships between pathological demand avoidance and other conditions, such as anxiety. Methodological limitations restrict current conclusions regarding the uniformity or stability of the constellation of behaviours associated with pathological demand avoidance or the characteristics of individuals displaying them. Clinical implications of current research are discussed. Lay Abstract Requests for diagnoses of pathological demand avoidance have increased over recent years, but pathological demand avoidance remains a controversial issue. The concept of pathological demand avoidance has been criticised for undermining the self-advocacy of autistic people and neglecting the potential role of anxiety as a possible underlying or contributing cause. The current study was undertaken to summarise and review the methodological quality and findings from current research into pathological demand avoidance in children and adolescents. Further aims were to describe how pathological demand avoidance has been identified and to explore the relationships with autism and other developmental and psychiatric disorders. After a comprehensive search, 13 relevant studies using a wide range of methods were identified and systematic quality assessments were undertaken. All the studies had based the identification of pathological demand avoidance, directly or indirectly, on descriptions from the original study by Newson and colleagues. However, the methods used to develop these criteria were not clearly described. Most studies relied exclusively on parental report for data, and there was a general failure to take account of alternative explanations for the behaviours under study. No studies explored the views of individuals with pathological demand avoidance themselves. Problems concerning definition and measurement in the reviewed studies currently limit any conclusions regarding the uniformity or stability of the behaviours described, or the characteristics of individuals displaying them. Relationships between pathological demand avoidance and other emotional and behavioural difficulties should be explored in future research, as should the perspectives of individuals with pathological demand avoidance themselves.

PurposePsychiatric assessment in adults with autism spectrum disorder (ASD) and intellectual disability (ID) is complex and challenging. With co-occurring congenital blindness, this complexity is increased. Systematic knowledge about psychiatric assessment in this combination of challenges is virtually non-existing, and there is little guidance available for clinicians faced with this task. The paper aims to discuss these issues.Design/methodology/approachExperiences from comprehensive psychiatric assessments in two adults with congenital blindness, ASD, and ID are explored and discussed.FindingsAdaptation of assessment procedures usually employed for individuals with ASD and ID involved no major alteration, but co-operation between mental health and visual impairment professionals was important, as was the involvement of the families of the individuals in question. In both cases, the patient met criteria for an anxiety disorder, underlining the vulnerability and the challenges involved in living with this combination of challenges.Research limitations/implicationsThere is an urgent need for research into mental health issues for this group, including case studies describing successful treatment or intervention for these issues.Practical implicationsPsychiatric assessment in individuals with this combination of challenges may be feasible, but requires involvement of professionals specializing in mental health in developmental disabilities, and professionals in visual impairment. Assessments need to be individually adapted.Originality/valueThis is the first study systematically describing psychiatric assessment in this group involving the use of checklists and assessment tools. Strategies and tools that were useful are described and discussed to aid other clinicians faced with similar challenges.

Introduction: autism spectrum disorder (ASD) and intellectual disability (ID) seem to influence the risk of and vulnerability to exposure to trauma and adverse events. While assessment of a psychiatric disorder in ASD and ID generally is challenging, identification of post-traumatic stress disorder (PTSD) seems particularly so, and knowledge does not seem easily accessible. Methods: This article provides a systematic review of studies describing trauma reactions in individuals with both ASD and ID, including studies involving any single case with the combination of ASD, ID, and PTSD. To systematically explore PTSD symptom presentation in the group, all reported symptoms from studies were assigned by DSM-5 criteria. Results: Eighteen studies met the inclusion criteria, eight group studies and 10 case studies. Assessment methodology in studies varied, as did the format of symptom report. DSM-5 criteria provided a useful framework for integrating findings across studies, indicating that PTSD may be identified in individuals with ASD and ID. However, symptoms involving alterations in arousal and negative alterations in thought and behavior seem more easily identified than symptoms of reexperiencing and avoidance. Conclusions: There is an urgent need to identify behavioral equivalents to PTSD symptoms in this group, making it possible to identify warning signs of trauma and abuse even if such incidents are not known to family or professional carers.

PurposeAutism spectrum disorder (ASD) is an exclusion criterion for one of the two attachment disorders in the DSM 5. However, previous findings indicate that ASD and attachment disorder are unrelated conditions and may co-occur. The purpose of this paper is to explore the diagnostic assessment of an adolescent male with ASD, intellectual disability (ID), severe challenging behaviour and a suspected attachment disorder.Design/methodology/approachCase study methodology was chosen because of its suitability in the exploration of complex clinical phenomena where prior knowledge is sparse.FindingsIt was possible to identify symptoms of attachment disorder in a case involving ASD, ID, anxiety and severe challenging behaviour. The Disturbances of Attachment Interview was particularly useful in this assessment, as was assessment of ASD symptoms and developmental history. Differentiating the two attachment disorders proved challenging.Research limitations/implicationsThere is a need for further research in ASD and attachment disorders not limited by current diagnostic categories.Practical implicationsCo-occurring symptoms of attachment disorder may be identified in individuals with ASD and ID, and exploration of these symptoms in assessments of children and adolescents with ASD/ID and challenging behaviour may be beneficial.Originality/valueThe study adds to previous findings on attachment disorder in ASD, demonstrating that identification of attachment disorder is possible even in the presence of a highly complex clinical picture involving severe challenging behaviour. It may also assist other clinicians in identifying and making more accurate assessment of attachment disorder in ASD and ID.

Introduction Individuals with autism spectrum disorder (ASD) and intellectual disability (ID) seem to be at increased risk for post-traumatic stress disorder (PTSD), but knowledge is sparse regarding its identification in this population. Previous research indicates that certain symptoms of PTSD may be more easily recognized, and that identifying reexperiencing and avoidance is particularly challenging. Methods Interpretative phenomenological analysis was used to explore 18 experienced clinicians’ perceptions of PTSD symptom expression in ASD and ID through individual, qualitative interviews. Results Informants provided examples from all symptom groups, but these differed in how frequently they were described. Recognition of reexperiencing may rely on knowledge about individuals’ trauma experience. Avoidance may present in a wider range of ways. Conclusion Development of reexperiencing and avoidance may follow different trajectories in this population, contributing to challenges in recognition. Reexperiencing may be more severe in ASD/ID. Implications are discussed in light of current diagnostic criteria.

Beginning in the 1980s, researchers began to develop normed measures to assess mental health issues and behavior disorders among persons with intellectual disabilities. This chapter provides an overview of these measures and the rationale for their development. Strengths and weakness of various assessment methods will be covered. The focus will be a broad overview of developments and trends since specific details will be covered in subsequent chapters on specific conditions.

Background: Individuals with intellectual disability (ID) and autism spectrum disorder (ASD) are at increased risk of sexual abuse. However, little is known about facilitating detection and disclosure. One year after discharge from a specialised psychiatric ward, a young man with mild ID and ASD disclosed previously unknown sexual abuse. The aim of the present study was to explore clinicians’ perceptions of their failure to detect abuse. Method: Interpretative phenomenological analysis was used to explore five staff members’ perceptions, with data being collected through an individual, semi-structured interview. Results: Staff reported behaviours that, in retrospect, they understood as possible indicators of abuse and/or attempts by the patient to disclose. Factors contributing to non-detection included insufficient trauma sensitivity, lack of exploration, and diagnostic overshadowing. Conclusions: Symptoms of trauma should be routinely explored in individuals with ASD and ID referred for psychiatric assessment – even in the absence of known trauma or abuse.

Background Individuals with autism spectrum disorder (ASD) and intellectual disability (ID) more frequently experience potentially traumatic events (PTEs), and may be more vulnerable to trauma-related symptoms. However, it is unclear how such symptoms are captured on tools used for behavioural and psychiatric assessment in this population. Aims To explore whether and how PTEs are associated with symptom reports in adults with ASD and ID. Methods and procedures Associations and group differences for death of a close relative and serious disease/injury in a close relative/caregiver/friend were explored in a clinical sample of 171 adults with ASD and ID referred for psychiatric assessment. Symptoms were measured using Aberrant Behavior Checklist (ABC) and Psychopathology in Autism Checklist (PAC). Outcomes and results Disease/injury was associated with higher scores on ABC irritability, ABC hyperactivity and self-injurious behaviour. Death was associated with lower scores on ABC lethargy and ABC stereotypic behaviour. Some associations reached significance only when controlling for ASD, ID, or verbal language skills, but the identified associations were not robust. No associations were found for PAC. Conclusions and implications There is a risk of under-appreciating the impact of PTEs in this population unless ASD, ID and verbal language skills are taken into account.

Background: Phelan-McDermid Syndrome (PHMDS)/22q13.3 deletion syndrome is a rare genetic disorder linked to Autism Spectrum Disorder (ASD) and Intellectual Disability (ID). There are reports of PHM...

Background: People with 22q11.2 deletion syndrome (DS) are assumed to be especially vulnerable to developing mental illness such as psychosis. Aim: The study was established to contribute to knowledge about metyrosine medication in patients with 22q11.2 DS and psychosis. Methods: A case study was established including a woman with intellectual disability, 22q11.2 DS, and psychosis. Metyrosine medication was implemented, as conventional anti-psychotic medication was unsuccessful. Results: Effect of metyrosine medication included both psychotic symptom relief with decreased aggressive behaviour. Adjunctive milieu therapy contributed to complience. Conclusion: For patients with 22q11.2 DS and psychosis, metyrosine medication may prove effective. However, there are significant ethical dilemmas related to metyrosine medication for psychotic symptoms.

Purpose Assessment of psychiatric disorders in people with autism spectrum disorder (ASD) and intellectual disabilities (ID) is challenging. The purpose of this paper is to explore the diagnostic decision making and strategies employed in the assessment of a young man with ASD and ID who eventually got the additional diagnosis of schizophrenia. Design/methodology/approach To describe and explore a process not easily converted into quantitative measures, it was chosen to perform a case study of a single case. Findings The combined knowledge of ASD, ID and psychiatric disorder was important in the current assessment. General assessment tools were of some value, but their results had to be interpreted with care. The same was true of a more ASD/ID-specific tool. Using multiple informers may strengthen data from such tools in this population, but does not make it interchangeable with self-report. The case presented demonstrates the possibility of negative symptoms and functional decline overshadowing positive psychotic symptoms in people with ASD/ID, as well as the expression of ASD changing with a functional decline. Originality/value The present study adds to the few previous reports on identification of psychosis in this population, and in addition, may assist clinicians in making more accurate psychiatric assessments of people with ASD/ID.

Mental health nursing for adults with intellectual disabilities and mental illness is understudied. The aim of this study was to investigate the use of validation in mental health nursing for patients with intellectual disabilities and additional mental illness in a specialised psychiatric inpatient setting. Ten nurses/social educators and four individual therapists described the use of validation; each provided three vignettes with clinical examples. The clinical examples support the view that interventions developed for patients in the general population are feasible also for patients with intellectual disabilities. Clinical implications relate to the use of validation as an important factor in mental health nursing for adults with intellectual disabilities. Skills required include being capable of interpreting behavioural equivalents of mental illness symptoms, responding adequately to unusual utterances, and occasionally communicating in a predominantly non-verbal way.

Purpose – The purpose of this paper is to describe and discuss interventions of stabilisation of emotions and behaviour in adults with post-traumatic stress disorder (PTSD). This topic is understudied in persons with intellectual disability. Design/methodology/approach – The aim of this study was to investigate interventions of stabilisation in persons with more severe intellectual disability; i.e. persons with moderate or severe intellectual disabilities. Five patients in a specialised psychiatric inpatient unit for patients with intellectual disabilities were included. Information about treatment of the patients was collected through case files, observations, and interviews. The authors of this paper followed a training programme for trauma therapists in addition to the inpatient treatment of the five patients. Findings – Six main areas of stabilisation of emotions and behaviour were identified: validation, anxiety relief, treatment of depressed mood, increased mastering of daily activities, protection against anxiety triggers, and facilitated staff communication. Protection from anxiety triggers seems to be a core element of milieu therapy interventions. Interventions for neurotypical PTSD patients, such as exposure therapy may be contraindicated for patients with more severe intellectual disabilities. Originality/value – Research on interventions of stabilisation towards adults with more severe intellectual disabilities is still in its infancy. The case reports may help milieu therapists to facilitate interventions towards patients with moderate or severe intellectual disabilities.