Applicability and Psychometric Properties of General Mental Health Assessment Tools in Autistic People: A Systematic Review.

In recent years, there has been a proliferation of instruments for assessing mental health (MH) among autistic people. This study aimed to review the psychometric properties of broadband instruments used to assess MH problems among autistic people. In accordance with the PRISMA guidelines (PROSPERO: CRD42022316571) we searched the APA PsycINFO via Ovid, Ovid MEDLINE, Ovid Embase and the Web of Science via Clarivate databases from 1980 to March 2022, with an updated search in January 2024, to identify very recent empirical studies. Independent reviewers evaluated the titles and abstracts of the retrieved records (n = 11,577) and full-text articles (n = 1000). Data were extracted from eligible studies, and the quality of the included papers was appraised. In all, 164empirical articles reporting on 35 instruments were included. The review showed variable evidence of reliability and validity of the various instruments. Among the instruments reported in more than one study, the Aberrant Behavior Checklist had consistently good or excellent psychometric evidence. The reliability and validity of other instruments, including: the Developmental Behavior Checklist, Emotion Dysregulation Inventory, Eyberg Child Behavior Inventory, Autism Spectrum Disorder-Comorbid for Children Scale, and Psychopathology in Autism Checklist, were less documented. There is a need for a greater evidence-base for MH assessment tools for autistic people.

Schizophrenia in Autistic People with Intellectual Disabilities. Treatment and Interventions.

Autistic people with intellectual disabilities appear to be at increased risk of schizophrenia. While current recommendations emphasize adapting interventions used for people with schizophrenia in general, few studies to date have investigated treatment of co-occurring schizophrenia in this specific population. To explore what interventions are provided to autistic people with intellectual disabilities and co-occurring schizophrenia in specialized mental health services, and to investigate whether changes in mental health symptoms and challenging behavior occurred during treatment. Using data from a longitudinal, national multicenter study, interventions provided to 26 autistic individuals with intellectual disabilities and co-occurring schizophrenia were explored. Symptoms were measured using the Psychopathology in Autism Checklist (PAC) and the Aberrant Behavior Checklist ABC) at referral (T1), at the end of treatment (T2), and at follow-up 12 months after T2 (T3). A broad range of interventions were provided to the participants, including inpatient admission, psychopharmacological treatment, various psychosocial interventions, and supportive interventions. Scores on the PAC and ABC were significantly lower at T2 than T1 for most scales, and no significant change was found from T2 to T3.Treatment of co-occurring schizophrenia appears feasible and effective in autistic people with intellectual disabilities.

A call for trauma-informed dental care for individuals with intellectual disabilities.

People with intellectual disabilities are at increased risk of dental anxiety and poor oral health. In addition, people with intellectual disabilities are at increased risk of potentially traumatic experiences, such as violence and sexual abuse, and appear to be more vulnerable to developing trauma-related disorders following such experiences. While psychological trauma is associated with poor oral health and dental anxiety in the general population, the potential link between dental anxiety, poor oral health and psychological trauma is yet to be explored in people with intellectual disabilities. In this conceptual paper, we provide an overview of recent findings concerning the relationships between oral health and intellectual disabilities, psychological trauma and intellectual disabilities, as well as between psychological trauma and oral health, and discuss the relevance of these findings related to dental care for people with intellectual disabilities. We conclude that psychological trauma is likely to contribute to dental anxiety and poor oral health also in people with intellectual disabilities. Implications include an urgent need for research exploring how trauma affects oral health and experiences of dental care for people with intellectual disabilities, as well as the importance of individualized and trauma-informed dental care for these individuals.

Mental health disorders, functioning and health-related quality of life among extensively hospitalized patients due to severe self-harm - results from the Extreme Challenges project.

Background: Severe self-harm leading to extensive hospitalization generates extreme challenges for patients, families, and health services. Controversies regarding diagnoses and health care often follow. Most evidence-based treatments targeting self-harm are designed for borderline personality disorder (BPD). However, current knowledge about mental health status among individuals with severe self-harm is limited. Objectives: To investigate psychopathology among patients extensively hospitalized due to severe or frequent self-harming behaviors. Method: A cross sectional study (period 2019-2021) targeting psychiatric inpatients (>18 years) with frequent (>5) or long (>4 weeks) admissions last year due to self-harm. The target sample (N = 42, from 12 hospitals across all Norwegian health regions) was compared to individuals admitted to outpatient personality disorder (PD) treatment within specialist mental health services in the same period (N = 389). Clinicians performed interviews on self-harm and psychopathology, supplemented by self-report. Results: The target sample were young adults, mainly female, with considerable hospitalization and self-harming behaviors, both significantly more extensive than the comparison group. The majority in both groups reported self-harm onset <18 years. The target sample reported increasing severity of self-harm acts and suicidal intention over time. Both samples had high levels of childhood trauma, impaired personality functioning, and a majority fulfilled criteria for PD. In the target sample, comorbid depression, PTSD, anxiety disorders, and substance use occurred more frequently and in 50%, psychosis/dissociative disorder/autism spectrum disorder/ADHD was reported (outpatient comparison sample: 9%). 35% in the target sample screened over cut-off for possible intellectual disability. The target sample reported poor psychosocial functioning and health-related quality of life - greater impairment than the outpatient comparison sample. Conclusion: The study reveals that severe self-harm inpatients have complex psychopathology and highlights the importance of individualized and thorough assessment among patients with severe and/or repetitive self-harm.

Post-traumatic stress disorder and experiences involving violence or sexual abuse in a clinical sample of autistic adults with intellectual disabilities: Prevalence and clinical correlates.

LAY ABSTRACT: Post-traumatic stress disorder is a mental health disorder that may be triggered by the experience of events perceived as terrifying or overwhelming. Examples of such events include being the victim of violence or sexual abuse. Compared with other people, autistic people have increased risk of being exposed to violence or sexual abuse. In addition, autistic people may be more vulnerable to developing post-traumatic stress disorder following such exposure. However, knowledge is limited concerning the prevalence of experiences involving violence and sexual abuse, and post-traumatic stress disorder, in autistic people with co-occurring intellectual disabilities. Detection of these experiences, and identification of post-traumatic stress disorder, may be challenging in these individuals, and previous research indicates that post-traumatic stress disorder symptoms may be overlooked or misinterpreted. In this study, we examined prevalence of post-traumatic stress disorder, violence and sexual abuse in a clinical sample of 88 autistic adults with intellectual disabilities referred for mental health assessment. Only 3.4% were diagnosed with post-traumatic stress disorder, even if experiences involving violence (34.1%) or sexual abuse (17.0%) were common. Anxiety and affective disorders were common diagnoses among participants with these experiences. Controlling for autism characteristics, level of intellectual disability and communication skills, experiences of violence/sexual abuse were found to be associated with a measure of 'challenging' behaviours. These results indicate that potentially traumatic experiences are common in autistic adults with intellectual disabilities referred for mental health assessment, and that post-traumatic stress disorder may be under-recognised. The findings highlight the importance of trauma screening and post-traumatic stress disorder assessment, as well as the importance of trauma-informed care, in this population.

Schizophrenia in autistic people with intellectual disabilities: Symptom manifestations and identification.

BACKGROUND: The assessment of schizophrenia in autistic people with intellectual disabilities is challenging. This study aimed to explore the identification of schizophrenia in this population. METHODS: Using data from a clinical multi-centre study, reported symptoms in 26 autistic individuals with intellectual disabilities diagnosed with co-occurring schizophrenia were explored. Scores on two checklists (Psychopathology in Autism Checklist [PAC], Aberrant Behaviour Checklist [ABC]) were compared with two comparison groups: autistic individuals with intellectual disabilities and other mental disorders (94), or no mental disorder (63). RESULTS: Reported symptoms of schizophrenia in this population met the formal diagnostic criteria. For PAC/ABC scales, only PAC psychosis differed for the schizophrenia group. Among participants with schizophrenia, two were diagnosed with additional mental disorders. Elevated scores for anxiety and depression were common. CONCLUSIONS: Emphasising core symptoms seems necessary when assessing co-occurring schizophrenia in autistic people with intellectual disabilities. The PAC may serve as a helpful screening tool.

Bias in assessment of co-occurring mental disorder in individuals with intellectual disabilities: Theoretical perspectives and implications for clinical practice.

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.

Case study: organizing outpatient pharmacological treatment of bipolar disorder in autism, intellectual disability and Phelan-McDermid syndrome (22q13.3 deletion syndrome).

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.

Case Report: Mechanisms in Misdiagnosis of Autism as Borderline Personality Disorder.

Autistic individuals without intellectual disabilities are sometimes not diagnosed until adolescence/adulthood. Due to increased risk of co-occurring mental health problems, these individuals may initially be referred to general, mental health services and not always be identified as autistic; some may be misdiagnosed with personality disorder (PD) prior to identification of autism. To explore possible mechanisms in misdiagnosis of autism, we report on the case of a young man with severe, non-suicidal self-injury (NSSI) and attention deficit disorder (ADD) who had been diagnosed with and treated for borderline PD prior to being diagnosed with autism. Following reassessment by mental health clinicians with experience of working with autistic individuals, the patient was diagnosed with autism, ADD, and depression-but not PD. Experiences from this case suggest that presence of co-occurring NSSI, depression, and ADD, as well as lack of comprehensive assessment and lack of autism knowledge in general mental health services, may contribute to risk that autism is misdiagnosed as PD. These findings highlight the need for autism expertise in general mental health services to facilitate appropriate diagnosis for autistic individuals who encounter these services, as well as the importance of undertaking comprehensive assessments.

Psychometric properties of the Psychopathology in Autism Checklist (PAC).

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.

Case study: identification of anxiety and subsequent intervention in an adolescent male with autism, severe intellectual disability and self-injurious behaviour.

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.

Potentially traumatic experiences and behavioural symptoms in adults with autism and intellectual disability referred for psychiatric assessment.

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.

"If we do not look for it, we do not see it": Clinicians' experiences and understanding of identifying post-traumatic stress disorder in adults with autism and intellectual disability.

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.

Metyrosine treatment in a woman with chromosome 22q11.2 deletion syndrome and psychosis: a case study.

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.