Adults with Autism Spectrum Disorders using psychiatric hospitals in Ontario: Clinical profile and service needs
Introduction
Individuals with Autism Spectrum Disorders (ASD) are one of the more complex yet underserved patient groups. Individuals with ASD make up as much as 0.6% of the population (Fombonne, 2003, Fombonne, 2005, Ouellette-Kuntz et al., 2006, Wing and Potter, 2002), and share a common triad of impairments in communication, socialization, and behaviour and interests (APA, 1994). The majority of the mental health research conducted on individuals with ASD has focused on the presence of psychiatric disorders and behavioural issues in children and adolescents (Bradley and Bolton, 2006, Bradley et al., 2004, Brereton et al., 2006, de Bruin et al., 2007, Leyfer et al., 2006, Simonoff et al., 2008). More recently however, attention has been directed toward investigating mental health issues in adults with ASD (Howlin, 2004, Mouridsen et al., 2008, Palucka and Lunsky, 2007, Tsakanikos et al., 2006, Tsakanikos et al., 2007a). Mental health problems are estimated to occur in 35% of adults with ASD living in the community (Ghaziuddin et al., 1998, Morgan et al., 2003, Tsakanikos et al., 2006). Individuals with ASD have increased rates of mental health disorders compared to the general population (Ghaziuddin et al., 1998, Morgan et al., 2003, Tsakanikos et al., 2006), and to individuals with intellectual disabilities (ID) without ASD (Bradley and Bolton, 2006, Brereton et al., 2006, Morgan et al., 2003). Poor understanding of the ASD and mental health concerns puts them at significant risk for psychiatric hospitalization. In the only known large scale study of hospital utilization in youth with ASD from the US, 11% of children with ASD aged 5–21 years experienced at least one psychiatric hospital inpatient admission (Mandell, 2008). These numbers are even more dramatic in adulthood: in a Danish study that followed children with ASD into adulthood, 48% of the sample used psychiatric hospital services by age 40, compared to only 6% of age and SES matched controls (Mouridsen et al., 2008).
There has been increasing awareness of the need for accessible and appropriate mental health services for adults with ASD, given how common hospitalization can be. A number of studies have described adults with ASD using outpatient (Nylander and Gillberg, 2001, Tsakanikos et al., 2007a) and inpatient (Hare et al., 1999, Palucka and Lunsky, 2007) psychiatric services. A recent study investigating predictors of hospital admissions of individuals with ID found that an autism diagnosis was one of the strongest predictors of admission (Cowley, Newton, Sturmey, Bouras, & Holt, 2005). In one Canadian study that examined the clinical profiles of inpatients with ASD, Palucka and Lunsky (2007) reported on the profiles of 13 patients with ASD in a specialized dual diagnosis unit. They made up 36% of admissions over a 6-year period. These individuals were likely to display problems with aggression, the most common diagnosis was mood disorder, and they frequently faced challenges in terms of discharge. Many of these individuals came from other cultural backgrounds; 46% were born outside of Canada, and another 6% were born in Canada to immigrant parents.
Besides the descriptive studies reviewed above, very few papers have considered how psychiatric inpatients and outpatients with ASD differ from other psychiatric service users, with and without intellectual impairments. Tsakanikos et al. (2006) conducted one of the few comparisons and reported lower rates of comorbid psychopathology but still significant behaviour problems in an adult sample of individuals with ASD and ID compared to individuals with ID and no ASD. Had such “behaviour issues” been conceptualized as psychopathology, the rates in the ASD group would have been higher. Clearly, more research is needed to understand the psychiatric profile of this group of individuals so their needs can be better met in the hospitals that serve them.
The Comprehensive Assessment Projects (CAPs) explored the clinical profile and service needs of individuals with ID receiving tertiary level mental health care across Ontario. Lunsky et al. (2006) compared inpatients and outpatients with ID and psychiatric diagnoses to other Ontario psychiatric hospital users. Individuals with ID were found to have more severe clinical symptoms and fewer resources (i.e., personal, economic, support, etc.) than individuals without ID. However, Lunsky et al. (2006) made no distinction between individuals with and without ASD. The purpose of the current study was to describe the clinical profile of adults with ASD and ID accessing Ontario's mental health care system, and to contrast them to individuals with and without ID using similar hospital services. It was hypothesized that individuals with ASD would have the highest recommended level of care and the most complex clinical profile when compared to psychiatric patients with and without ID.
Section snippets
Method
The sample for this study was drawn from a mental health services planning study conducted in Ontario, Canada (population of 11 million) from 1998–2003 in the nine psychiatric hospitals in the province. Patients for this study were drawn from three psychiatric hospitals responsible for providing tertiary mental health services to urban, semi-urban and rural communities in Southern Ontario. Only these three hospitals were included because diagnostic information on ASD was not consistently
Colorado Client Assessment Record (CCAR)
The CCAR is a standardized tool for conducting a comprehensive assessment of patient functioning (Ellis et al., 1984, Ellis et al., 1991). Based on their familiarity with the patients being rated and medical chart documentation, clinicians reported any psychiatric diagnoses (including intellectual disability/mental retardation and other disorders of childhood/adolescence) by selecting categories (e.g., mood disorder, substance abuse disorder, anxiety disorder, etc.) based on psychiatric
Analyses
First, descriptive analyses are provided on the ASD–ID group. Next, individuals with ASD–ID were compared to a random sample of individuals with ID and no ASD (ID group; N = 23) as well as a random sample of hospital users with neither an ASD nor ID diagnosis (non-ID group; N = 23). Because the majority of individuals in the ASD–ID group were male inpatients, the two comparison groups were matched on patient status (i.e., inpatient or outpatient) and gender. This way, differences found between the
Description of ASD sample
Individuals with ASD and ID represented 2.5% (N = 19) of inpatients and 0.7% (N = 4) of a stratified random sample of outpatients from the three psychiatric hospitals. Furthermore, they made up 16.1% of inpatients and 4.9% of outpatients with ID. Of the individuals that were receiving outpatient services (N = 4), 3 were living in a group home and 1 individual was residing in a private home.
The majority of individuals with ASD and ID were male (74.0%), single (100%), English speaking (95.5%) and
Discussion
The purpose of this study was to examine the clinical profile of individuals with ASD and ID accessing tertiary level mental health care in Ontario and to determine the characteristics that set them apart from other hospital patients. The majority of individuals with ASD and ID were single, male inpatients on psychotropic medication. Less than half of this group had a comorbid psychiatric diagnosis, of which psychotic disorders and mood disorders were the most common. For the most part,
Acknowledgement
We wish to acknowledge Chris Koegl, Janet Durbin, Stacy White, Poonam Raina and Tamara Arenovich for their assistance with the preparation of this paper.
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