Preliminary Findings From a Nationwide, Multicenter Mental Health Service for Adults and Older Adolescents With Autism Spectrum Disorder and ID

Abstract

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.

Psychometric properties of the Psychopathology in Autism Checklist (PAC)

“…That study was based on a cohort of individuals with ASD and ID and previously identified psychiatric illness who were selected on the basis that they met strict criteria for the psychiatric disorders diagnosed. For participants such as those in the present study, who comprised a very heterogenous group of individuals with ASD and ID referred for psychiatric assessment, cut-off values may need to be lowered in order better to identify individuals requiring a more focussed psychiatric examination (Helverschou et al 2020a).…”

“…The AUP (Autism, Intellectual disability and Psychiatric disorder) study is an on-going clinical treatment study that began in 2010 (see Helverschou et al 2020a). It involves eight clinical centres responsible for providing specialist, hospital-level mental health services to individuals with ASD and ID across all four health regions in Norway.…”

“…The importance of individualized, multimodal and multi-informant approaches to the assessment of mental health problems has been emphasized throughout (Helverschou et al. 2020b , MacNeil et al. 2009 ).…”

“…To determine how well assessment by the PAC at referral predicts subsequent clinical diagnosis based on detailed multi-disciplinary assessment, specificity, sensitivity, and predictive values (positive and negative) and Area under the Curve (AUC) were explored. Data were collected as part of a national multi-centre clinical study (Helverschou et al 2020a).…”

“… 2017 ) there are limited data on the reliability and validity of these measures for individuals who also have ASD (Helverschou et al. 2020b , Leyfer et al. 2006 , Underwood et al.…”