Research in Autism Spectrum Disorders

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1 Research in Autism Spectrum Disorders 3 (2009) Contents lists available at ScienceDirect Research in Autism Spectrum Disorders Journal homepage: Adults with Autism Spectrum Disorders using psychiatric hospitals in Ontario: Clinical profile and service needs Yona Lunsky a,b, *, Carolyn Gracey a, Elspeth Bradley b,c a Centre for Addiction and Mental Health, Canada b University of Toronto, Canada c Surrey Place Centre, Canada ARTICLE INFO ABSTRACT Article history: Received 6 March 2009 Accepted 8 June 2009 Keywords: Autism Psychiatric services Intellectual disability Hospitalization Background: Adults with Autism Spectrum Disorders (ASD) represent a small, but challenging sub-group of patients within Ontario s mental health care system. However, few studies have documented the clinical characteristics of this population and examined how such individuals differ from other psychiatric patients, with or without intellectual disabilities (ID). Method: A secondary analysis of data from the 2003 Comprehensive Assessment Projects from three psychiatric hospitals in Ontario was conducted to describe patients with ASD and ID and to determine how their profile compared to other hospital users. Results: Twenty-three patients with ASD and ID were matched on gender and patient status (inpatient/outpatient) to individuals with and without ID. Individuals with ASD and ID were similar in terms of demographics to patients with and without ID. However, individuals with ASD and ID were younger, spent more days in hospital and were less likely to have a psychotic disorder diagnosis than both patients with and without ID. Inpatients with ASD and ID were recommended for a higher level of care than hospital service users without ID. Conclusions: Clearly, this small sub-group of individuals within the hospital population has high clinical needs that are not always well met. ß 2009 Elsevier Ltd. All rights reserved. * Corresponding author at: Dual Diagnosis Program, Centre for Addiction and Mental Health, 501 Queen St. West, Toronto, ON M5V 2B4, Canada. Tel.: x address: yona_lunsky@camh.net (Y. Lunsky) /$ see front matter ß 2009 Elsevier Ltd. All rights reserved. doi: /j.rasd

2 Y. Lunsky et al. / Research in Autism Spectrum Disorders 3 (2009) 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, 2005; Ouellette-Kuntz et al., 2006; Wing & 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 & Bolton, 2006; Bradley, Summers, Wood, & Bryson, 2004; Brereton, Tonge, & Einfeld, 2006; de Bruin, Ferdinand, Meester, de Nijs, & Verheij, 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, Rich, Isager, & Nedergaard, 2008; Palucka & Lunsky, 2007; Tsakanikos et al., 2006; Tsakanikos, Costello, Holt, Sturmey, & Bouras, 2007a). Mental health problems are estimated to occur in 35% of adults with ASD living in the community (Ghaziuddin, Weidmer-Mikhail, & Ghaziuddin, 1998; Morgan, Roy, & Chance, 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 & 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 & Gillberg, 2001; Tsakanikos et al., 2007a) and inpatient (Hare, Gould, Mills, & Wing, 1999; Palucka & 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.

3 1008 Y. Lunsky et al. / Research in Autism Spectrum Disorders 3 (2009) Method The sample for this study was drawn from a mental health services planning study conducted in Ontario, Canada (population of 11 million) from 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 captured in the other six hospitals, as they used an earlier version of the assessment tool described below (which did not explicitly ask whether ASD was present). The planning study employed a crosssectional design, surveying a stratified sample of outpatients from the three hospitals, and all inpatients from the three hospitals on a given census day. 3. Measure 3.1. Colorado Client Assessment Record (CCAR) The CCAR is a standardized tool for conducting a comprehensive assessment of patient functioning (Ellis, Wilson, & Foster, 1984; Ellis, Wackwitz, & Foster, 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 diagnoses in the ICD-9. In addition, staff assessed patient impairments and strengths across 25 domains of functioning and two global ratings. Each domain is rated on a 9-point scale from 1 (high functioning/no special problem) to 9 (low functioning/extreme problem). A detailed administration manual defines the CCAR domains and rating anchors, and all raters attended a 1-day training session and practiced using the tool with case examples. Data from both U.S. and Ontario studies support the reliability and validity of the CCAR (Coffman, 2004; Durbin, Cochrane, Goering, & Macfarlane, 2001; Schwartz, 1999). The level of care template aims to assign patients to the least restrictive level of care to meet their needs. An individual is assigned to a recommended level of care through use of a standardized algorithm using ratings from six of the 25 CCAR domains: security/management risk, overall problem severity, self-care/basic needs, overall lack of resources, danger to self, and danger to others. Patients are assigned to one of five recommended levels of care (see Table 1) ranging from self-management (Level 1) to tertiary level inpatient care (Level 5) based on this algorithm. It was developed through a combination of literature review and stakeholder input, resulting in good face and content validity (Durbin et al., 2001). This template is currently being used across hospitals and community mental health services in the province. In this study, individuals were included in the ASD group if the ASD diagnosis was selected on the CCAR survey in the psychiatric diagnoses section. Only 1 individual was identified as having ASD without a co-occurring ID and was thus excluded from the study. Individuals with ID (without ASD) indicated on the CCAR were included in the ID group and individuals without ID and without ASD were Table 1 Recommended level of care template. Level Level 1: Level 2: Level 3: Level 4: Level 5: Description Self-management with intermittent use of core community services and supports. Individualized support on a weekly basis. Psychiatric care provided through regular contact with a psychiatrist or mental health nurse in an outpatient setting. Community living with intensive integrated treatment and support (daily with 24 h access). Usually associated with Assertive Community Treatment. Residential treatment with a strong rehabilitation component. This level is appropriate for persons whose behaviours make it difficult to live independently and at times need a secure environment. Tertiary inpatient care

4 Y. Lunsky et al. / Research in Autism Spectrum Disorders 3 (2009) included in the non-id group. As a result, 1164 individuals without ID, 176 individuals with ID, and 23 individuals with ASD and ID were identified out of a total of 1363 psychiatric patients from these hospitals. 4. 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 three groups could not be attributed to either variable. Omnibus chi-squared analyses were used to compare the groups on demographics, diagnoses, and service needs. Additional chisquared analyses were conducted (ASD ID vs. ID, ASD ID vs. non-id) only when the omnibus chisquare was significant. Length of stay and age were contrasted using between-group analyses of variance (ANOVAs). Similarly, when the main effect was significant, Fisher Least Significant Difference post hoc analyses were conducted on two sets of pair-wise comparisons. Analyses were performed with SPSS version 14 (2005). Institutional ethics review board approval for conducting secondary analyses was obtained. 5. Results 5.1. 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 unemployed (100%). The average age was years (SD = 9.12) and the number of days spent in hospital for the inpatients (N = 19) was 6.3 years (SD = 6.95) at the time of the study. One individual was hearing impaired and 4 individuals had vision impairments. More than a third (35.8%) of these individuals had an additional medical diagnosis and 90.5% were taking psychotropic medication. Individuals with ASD and ID were most commonly diagnosed with a psychotic disorder (26.1%) or mood disorder (26.1%) and a few individuals had a history of physical abuse (13.0%) as well as problems with fire setting and/or property destruction (13.0%). Ten (43.5%) individuals did not have a psychiatric disorder diagnosis in addition to the ASD. The majority of individuals with ASD were recommended for the highest [level 4: 62.5% and level 5: 17.4%] levels of care, based on their CCAR ratings. Sixteen (69.6%: 14 inpatients and 2 outpatients) of the individuals with ASD and ID were enrolled in 1 of 5 specialized Dual Diagnosis programs. In terms of psychiatric diagnoses, individuals within mainstream programs were more likely to have a psychotic disorder diagnosis (x 2 = 5.03, p <.05) than individuals in Dual Diagnosis programs. All 6 of the individuals with ASD and ID who were diagnosed with a mood disorder were served by the Dual Diagnosis programs, although the difference in rates of mood disorder between the specialized and mainstream services failed to reach significance Group comparisons of patient demographics and clinical profiles The three groups differed in age (F(2) = 4.04, p <.05). Individuals with ASD and ID ( X ¼ 35:43, SD = 9.12) were significantly younger than those in the ID ( X ¼ 42:48, SD = 11.01; (D)M = 7.04, p =.038) and non-id ( X ¼ 44:43, SD = 13.36; (D)M = 9.00, p =.009) groups. The three groups also differed with regard to days spent in hospital at the time of study (F(2) = 4.41, p <.05). Inpatients with ASD and ID( X ¼ 2300:89, SD = ) had longer lengths of stay than inpatients with ID ( X ¼ 774:42, SD = ; (D)M = , p =.008), and inpatients without ID ( X ¼ 981:56, SD = ;

5 1010 Y. Lunsky et al. / Research in Autism Spectrum Disorders 3 (2009) Table 2 Comparison of patient characteristics. Patient characteristics Category ASD ID Non-ID Overall ASD vs. ID ASD vs. Non-ID N(%) N(%) N(%) x 2 p x 2 p x 2 p Never married 23(100) 21(91.3) 18(78.3) Unemployed 23(100) 22(100) 21(95.5) Psychotropic medication 19(90.5) 22(95.7) 17(89.5) Comorbid medical diagnosis 8(34.8) 15(65.2) 13(59.1) Forensic involvement 2(9.1) 7(31.8) 11(47.8) Table 3 Comparison of psychiatric diagnoses and clinical history. Psychiatric diagnoses a Category ASD ID Non-ID Overall ASD vs. ID ASD vs. Non-ID N(%) N(%) N(%) x 2 p x 2 p x 2 p Mood disorder 6(21.1) 3(13) 1(4.3) Anxiety disorder 0(0) 2(8.7) 0(0) Substance abuse 0(0) 3(13) 8(34.8) Psychotic disorder 6(26.1) 18(78.3) 19(82.6) < <.001 Personality disorder 1(4.3) 6(26.1) 7(30.4) a Patients could receive more than one diagnosis. (D)M = , p =.023). No differences in marital status, employment or psychotropic medication use were observed between the three groups, but individuals with ASD and ID were less likely to have a forensic history than the other two groups (Table 2). In terms of diagnoses, the ASD ID group was less likely than the two other groups to have diagnoses of psychotic disorder and substance abuse disorder (Table 3) Recommended level of care Table 4 presents the recommended level of care of the ASD ID, ID and non-id groups. The overall distribution of care differed significantly between the three groups (x 2 = 20.2, p <.05). Although a difference between the ASD ID and non-id groups (x 2 = 16.1, p <.05) was observed, recommended levels of care between the ASD ID and ID groups failed to reach significance (x 2 = 6.87, p =.076). Approximately 83% of the individuals with ASD and ID were recommended for level 4 care and level 5 (vs. 52.1% of the individuals with ID and 30.4% of the individuals without ID). Furthermore, few individuals with ASD and ID (17.4%) were recommended for less intensive levels of care (levels 2 and 3) in contrast to the ID (47.8%) and non-id (56.5%) groups. Table 4 Recommended level of care. ASD ID Non-ID N(%) N(%) N(%) Level 1 3(13.0) Level 2 2(8.7) 2(8.7) 1(4.3) Level 3 2(8.7) 9(39.1) 12(52.2) Level 4 16(65.2) 12(47.8) 5(21.7) Level 5 4(17.4) 1(4.3) 2(8.7)

6 Y. Lunsky et al. / Research in Autism Spectrum Disorders 3 (2009) 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, individuals with ASD and ID were similar demographically and diagnostically to patients with and without ID. However, individuals with ASD and ID were younger, had spent more days in hospital, and were less likely to have a psychotic disorder diagnosis than both other patient groups. Furthermore, individuals with ASD and ID were recommended for a higher level of care than hospital services users without ID. There are several findings regarding psychiatric diagnosis in the ASD ID group that warrant comment. Firstly, psychotic disorder was the most common diagnosis given to patients with ASD and ID even though the literature would suggest that mood disorders and anxiety disorders are more prominent (Bradley & Bolton, 2006; Hutton, Goode, Murphy, Le Couteur, & Rutter, 2008). Given that the individuals with ASD and a comorbid psychotic disorder diagnosis were almost exclusively diagnosed by mainstream programs and not programs led by psychiatrists with expertise in ASD, this could reflect diagnostic confusion between the features of the two disorders amongst clinicians who are less experienced with adults with ASD and ID. Several papers have been published on the overlapping but distinctive features of the two disorders. Berney (2007) suggests that whenever ASD has been identified in someone with a psychotic disorder diagnosis, the psychosis needs to be reviewed. Virtually none of the patients with ASD and ID were diagnosed with an anxiety disorder even though researchers have found that symptoms of anxiety are common and problematic in this population (Gilliott, Furniss, & Walter, 2001; Hutton et al., 2008). It is possible that in psychiatric settings for individuals with serious mental illness, psychiatrists practice a form of diagnostic overshadowing (see Reiss & Szyszko, 1983) and consider the anxiety symptoms to be part of the ASD and not something separate that might respond to treatment. Fewer than half of the individuals with ASD and ID had an additional psychiatric disorder diagnosis, although all of these patients were accessing tertiary level mental health care and almost all of them (91%) were being prescribed psychotropic medications. This is similar to the Tsakanikos et al. (2006) study in which the majority (64%) of the adults with autism and ID who were referred to a specialist mental health service did not have a comorbid psychiatric diagnosis but were prescribed psychotropic medications. Similarly, a more recent study by Tsakanikos, Sturmey, Costello, Holt, and Bouras (2007b) reported that an ASD diagnosis in adults without a comorbid psychiatric disorder predicted admission to an inpatient psychiatric unit because of behaviour management problems. These findings speak to the complexity of the disorder and the challenges that these adults pose in the community as a result of their ASD and ID diagnosis alone. Individuals with ASD and ID represented 12% of inpatients with ID in the three hospitals, which is relatively consistent with other studies of hospitalized patients with ASD (Alexander, Piachaud, & Singh, 2001; Cowley et al., 2005; Mackenzie-Davies & Mansell, 2007; Palucka & Lunsky, 2007; Tajuddin, Nadkarni, Biswas, Watson, & Bhaumik, 2004). However, only 1 individual in the current study was identified as not having an intellectual disability; this is surprising given the high rates of psychiatric comorbidity amongst individuals with Asperger syndrome (Ghaziuddin et al., 1998; Ghaziuddin, 2002; Frith, 2003; Khouzam, El-Gabalawi, Pirwani, & Priest, 2004; Meyer, Mundy, van Hecke, & Durocher, 2006; Szatmari, Bremner, & Nagy, 1989; Tonge, Brereton, Gray, & Einfeld, 1999). These findings raise the question of whether these higher functioning/non-id individuals are underrecognized (i.e., Asperger syndrome is not diagnosed) in Ontario s psychiatric hospitals or underserved there (i.e., such patients are not admitted to hospital services). Individuals with ASD without ID fall within the gap between specialized services for ID and the mainstream mental health system (see Berney, 2007 and Ward & Russell, 2007). In Ontario currently, as is the situation in the UK (Royal College of Psychiatrists, 2006), individuals with Asperger syndrome are ineligible for psychiatric services offered to adults with ID because they are too high functioning even though the providers of such services have the appropriate training in ASD. This would explain why all of the individuals with

7 1012 Y. Lunsky et al. / Research in Autism Spectrum Disorders 3 (2009) ASD served in the Dual Diagnosis programs were lower functioning cognitively. Clinicians in mainstream programs may not recognize individuals with milder forms of ASD, particularly when signs of other psychiatric disorders co-exist (see also Raja & Azzoni, 2001). This may be a consequence of limited training in Canadian psychiatry residency programs on how to diagnose or recognize ASD in adults (Lunsky & Bradley, 2001). There are several limitations that should be taken into account when interpreting these findings. Firstly, sample sizes are very small and may have contributed to the lack of differences between groups. This study is also limited in that data reported here are based on secondary analyses of data developed for another purpose. Information regarding specific ASD diagnoses was not available. Furthermore, level of ID was only available for 63% of this sample and the accuracy of ID and psychiatric diagnosis cannot be addressed, but should be given further consideration. Lastly, these findings are specific to the patient population within three psychiatric hospitals and thus, cannot comment on individuals not receiving services or who are receiving services outside of the tertiary level mental health care system. Future research with a larger treatment population of individuals with ASD could examine how well higher functioning adults are being served, as well as how certain psychiatric diagnoses are stratified across the varying degrees of intellectual disability including individuals without intellectual impairments. In addition, research is required that further compares the characteristics of adults with ASD accessing specialized vs. mainstream mental health services and treatment outcome for the two types of services. Rather than rely on diagnoses made by inexperienced clinicians, researchers should conduct more in-depth assessments of autism symptomatology in a large study group. In terms of clinical implications, adults with ASD are a challenging, underserved sub-group of patients accessing psychiatric hospitals in Ontario. Psychiatric hospital staff needs to be trained in the assessment, diagnosis and treatment of adults with ASD and ID to more appropriately tailor services to them, and psychiatric hospitals should also increase their capacity to meet the needs of individuals on the milder end of the Autism Spectrum. 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. References Alexander, R. T., Piachaud, J., & Singh, I. (2001). Two districts, two models: In-patient care in the psychiatry of learning disability. 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