A Study of Activities of Daily Living and Employment for Adults with Autism. Spectrum Disorders in Taiwan. Ling-Yi Lin, Shu-Ning Yu, & Ya-Tsu Yu

Transcription

1 1 A Study of Activities of Daily Living and Employment for Adults with Autism Spectrum Disorders in Taiwan Ling-Yi Lin, Shu-Ning Yu, & Ya-Tsu Yu Department of Occupational Therapy, National Cheng Kung University, Taiwan Acknowledgments Support for this research was provided by grant NSC C B from the Taiwan National Science Council. We thank the families who participated in this research and the parents autism associations in Taiwan. To whom correspondence should be addressed: Ling-Yi Lin, ScD Assistant Professor Department of Occupational Therapy, National Cheng Kung University 1 University Road, Tainan City 701, Taiwan lingyi@mail.ncku.edu.tw; Tel: ext. 5917; Fax:

2 2 1. Introduction Out of a population of 23 million people, the overall prevalence of people with disabilities in Taiwan has been estimated at 4.65%, based on an official survey (Taiwan Ministry of the Interior [TMOI], 2011). Autism spectrum disorders (ASD) constitute one of the major developmental disabilities. ASD is characterized by impairments in communication, reciprocal social interaction, and the presence of restricted and repetitive behaviors or interests (American Psychiatric Association [APA], 2000). The Centers for Disease Control and Prevention in the United States (2010) estimated that an average of 1 in 110 children has ASD. The prevalence of ASD is reportedly increasing in Western countries as well as in Taiwan (Lin, Lin, & Wu, 2009; Taiwan Department of Health, 2011). In 2007, the annual rate of increase in ASD was 16.52%, which was the highest among all disabilities (TMOI, 2008). The number of identified persons with ASD in Taiwan was 10,160 in 2010 (TMOI, 2011). Almost 20% of those with ASD were 18 years old and older. Within 10 years, approximately 7,000 more people in Taiwan with ASD will become adults and urgently need help solving employment and placement issues. Increasing attention has been paid to studying the outcomes of individuals with ASD during adolescence and adulthood in Western countries. Functional independence is one major factor related to outcomes in adulthood. Research in Western countries indicates that many adults with ASD live with their families (Seltzer et al., 2000; Taylor & Seltzer, 2011),

3 3 and that they need high levels of assistance and care (Eaves & Ho, 2008; Esbensen et al., 2010; Howlin, 2000; Howlin et al., 2004; Seltzer & Krauss, 1989). Occupation is another major factor related to outcomes in adulthood. Previous studies reported that people with ASD had poor outcomes in adulthood (Ballaban-Gil et al., 1996; Billstedt et al., 2005; Ellison et al., 2005; Eaves & Ho, 2008; Howlin et al, 2004; Taylor & Seltzer, 2011). A low rate of employment is common for adults with ASD in different countries. In the United States, in one group of 45 adults with ASD (Ballaban-Gil et al., 1996), only five were employed in competitive jobs and six were employed in sheltered workshops. Similarly, Taylor and Seltzer (2011) reported that of 66 young adults with ASD, only four were employed in competitive jobs and eight worked in supported jobs. A Canadian study (Eaves & Ho, 2008) reported that of a group of 48 young adults, only three worked independently and 27 were employed in sheltered or part-time jobs. In a group of 68 adults with ASD in the United Kingdom, Howlin et al. (2004) found that 9 (13%) had competitive employment and that 12 (18%) were employed in supported or sheltered jobs. Notably, these people with ASD who were competitively employed tended to work in menial jobs. The pattern of underemployment for young adults with ASD has persisted for the past 15 years. However, research on the activities of daily living and employment levels of adults with ASD in Taiwan is limited. Research in Taiwan has primarily focused on children with ASD. Only one published study has focused on adolescents (15 years old and older) and adults with

4 4 ASD (Chang, 1996). Chang reported that 80% of 99 adolescents and adults with ASD lived with their nuclear families and could not independently care for themselves. She also reported that only 9.9% of them had part-time jobs. Presently, research has not directly examined outcomes for adults with ASD within 15 years after the Chang (1996) study. There is a wide gap in our knowledge about the current status of daily activities and employment in this adult population. Therefore, it is important to investigate what activities adults with ASD do in their daily living and to explore their employment status in Taiwan. The aims of the study were to investigate outcomes related to functional independence and employment among people with ASD in Taiwan. Thus, in the current study, we addressed the following questions: (1) What activities do adults with ASD do in their daily living? (2) Are adults with ASD employed? (3) What kind of jobs do adults with ASD have?

5 5 2. Methods 2.1. Recruitment procedures The Research Review Committee at National Cheng Kung University approved the study protocol. A letter describing the purpose and procedures of the study, a contact card, and a self-addressed stamped envelope were sent to 300 families by autism agencies and associations in Taiwan. Caregivers or guardians wishing to learn more about the study returned the contact card to the principal investigator who then contacted the potential participants by telephone. An anonymous questionnaire and a self-addressed stamped envelope were mailed to caregivers and guardians who agreed to participate and met the study criteria. The written questionnaire was self-administered. Primary caregivers or guardians were asked to complete the questionnaire and return it to the investigator within one week Measures Demographic characteristics The demographic characteristics of the individuals included age, gender, diagnosis, severity, education level (1 = no schooling/elementary school to 5 = graduate school), and marital status (single, married, or otherwise) Functional independence of the participant with ASD

6 6 Caregivers or guardians completed a checklist indicating whether individuals with ASD could independently complete basic functional and instrumental activities of daily living (e.g., personal care, meal preparation). Basic functional skills refer to the daily self-care activities of feeding/eating, bathing, grooming, dressing, toileting, and mobility from a modified version of the Barthel Index (Mahoney & Barthel, 1965). The person with ASD is rated on a 3-point scale ranging from 0 (Does not do task at all) to 2 (Does task independently). Scores range from 0 to 12, with higher scores indicating more functional independence in self-care activities. Instrumental activities of daily living were examined using the Frenchay Activities Index (FAI) (Holbrook & Skilbeck, 1983). The FAI consists of 15 activities, each of which is scored on a 4-point scale (1 to 4) that yields a total score ranging from 15 (inactive) to 60 (highly active). Scoring is based on the frequency with which the activities are done at home as well as outside the home. It has three domains: domestic chores, outdoor activities, and leisure/work Employment status and occupational categories Caregivers or guardians were asked to provide current information on the employment status, occupational activities, vocational training programs, and types of jobs of the adults with ASD Data management and analysis

7 7 SPSS 17.0 for Windows (SPSS Inc., Chicago, IL) was used to analyze the data. Descriptive statistics were used to examine the demographic data and outcome measures for study variables. Analysis of variance (ANOVA) was used to examine group differences in the study variables. 3. Results 3.1. Response rate and demographics The overall response rate was 28.7%. However, five questionnaires were invalid because they had not been completed, which left 81 questionnaires for the data analysis. We finally enrolled 81 people with ASD and their caregivers/guardians in southern Taiwan. Almost half (35/81 = 43.8%) of the participants with ASD were less than 21 years old (age range: years; mean age: 22.8 years). They had been diagnosed by a medical or mental health professional using the Diagnostic and Statistical Manual IV (DSM-IV) criteria (APA, 1994). Most (69/81 = 85.2%) of the participants with ASD were men, and all lived with their caregivers or guardians. Table 1 presents the demographic data for the study population Activities of daily living More than three quarters (80.2%) of the participants with ASD could independently care for themselves (see Table 2), eight needed caregivers to provide some assistance, and eight could not take care of themselves and required maximum assistance from caregivers. The mean basic functional skills score was 11.2 (SD = 2.1; range: 2-12).

8 8 The most frequently independently engaged-in instrumental activities of daily living included walking outside for more than 15 minutes (88.9%), light housework (85.2%), and local shopping (80.2%). For domestic chores, more than two-thirds (71.6%) of those with ASD had never prepared main meals, and more than half (53.1%) had never done laundry. About 51% of them had never actively pursued an outdoor hobby, and 52% of them had never done gardening. For leisure/work, 83% of them had never maintained a household or a car, and 77% of them had never been gainfully employed. Table 3 presents the mean scores of domestic, outdoor, and leisure/work activities. The mean total score of the FAI was 33.0 (moderately active). Only 13% were highly active. In addition, more than half (55.6%) frequently used a computer, and 38.3% of used a cell phone most days Employment status, occupational activities, and occupational categories Only 13.6% (n = 11) of our participants with ASD were employed (6.2% were working more than 20 hours per week): three had been given vocational training and five were in supported or sheltered jobs (Table 4). The types of occupations consisted of food and beverage service (n = 5), baking (n = 2), and cleaning (n = 2). Only one had talent for music and had a part-time job in music, and one had a part-time job as a baggage handler. Only 4.9% were attending school: two attended college and two attended a special education school.

9 9 Most (81.5%) of the participants with ASD were unemployed. Some had been given vocational training (n = 9) and some had worked at supported or sheltered jobs (n = 10); however, after they had left the special education system, they no longer used these services, were unemployed, and stayed at home and were cared for by family members. Our examination showed that the 11 employed people with ASD and the four who were in school (including vocational training) had a significantly higher level of functional independence (mean = 42.9, SD = 8.6; F = 23.3, p <.001) than did the 66 unemployed participants (mean = 30.8, SD = 8.7). However, there was no significant difference in self-care activities between the two groups. 4. Discussion The present study contributes to our knowledge about what adults with ASD do in their daily living and about their employment status in Taiwan. There were three main findings. First, most of our participants with ASD were able to independently care for themselves, but they did not engage in many instrumental activities of daily living. Second, most of them were unemployed. Third, employed participants with ASD tended to have menial jobs. In the present study, all of the people with ASD lived with their caregivers or guardians. In Taiwan, it is uncommon to place family members with ASD in institutions or other community settings. Parents of adolescents and adults with ASD (Chou, 1996) or mental retardation (Chen, 2003) prefer to take care of their children by themselves. As a result, over

10 10 90% of those with intellectual disabilities (including autism) live with their family members (Chou & Schalock, 2007), compared with the 50-60% reported in studies on Western countries (Ballaban-Gil et al., 1996; Billstedt et al., 2005; Eaves & Ho, 2008; Ellison et al., 2005; Howlin et al, 2004; Taylor & Seltzer, 2011). The majority of adults with ASD have significant difficulties with residential independence (Howlin et al., 2004). In the present investigation, many of the participants with ASD were capable of all basic self-care activities in their daily living because their ASD was not severe enough to prevent them from independently caring for themselves. However, they had difficulties in engaging in outdoor and leisure activities. Consistent with other studies (e.g., Esbensen et al., 2010; Howlin et al., 2004; Matson et al., 2009; Poon, 2011; Taylor & Seltzer, 2011), we found that participants with ASD had persistent difficulty participating in community settings, possibly because of a lack of adequate adult services. Taylor and Seltzer (2011) reported that some people with ASD who had no comorbid diagnosis of intellectual disability did not participate in any regular activities. They concluded that the current adult day-service system in the USA may not be adequate to accommodate the unique needs of people with ASD. Indeed, there are very few autism-focused adult services in Taiwan as well. Thus, people with ASD are relatively isolated and have limited access to the larger community beyond their immediate family.

11 11 Furthermore, only four of the 81 participants with ASD were attending school, including special education and post-secondary education, and only two (2.5%) were pursuing a post-secondary educational degree in the present sample. This percentage is substantially below the 76.3% rate of college and university attendance for their peers without disabilities (Taiwan Department of Education, 2010), which suggests that barriers to pursuing post-secondary education for people with ASD should be the focus of future investigations. A high proportion of our participants with ASD were not getting any kind of employment or vocational services. We found that only five (6.2%) had competitive jobs requiring them to work more than 20 hours per week. Most adults with ASD (81.5%) had poor outcomes, which was worse than in a Swedish study (Billstedt et al., 2005) that reported 60-75% with poor outcomes. Similar to the findings in Chang (1996), most of our participants with ASD stayed at home, which increases the family caregiver burden. A recent review (Levy and Perry, 2011) of studies related to outcomes in adolescents and adults with autism suggests that addressing the service and support required for all individuals with ASD has become increasingly important. Our findings also indicate that there is an urgent need to develop adult day-services and vocational services for this population in Taiwan. The limitations of this study were its small study population and the absence of a comparison group. Because the participants and their families were recruited from southern

12 12 Taiwan, our findings may not be generalizable to families in other areas of Taiwan. Additionally, this study relied on self-report questionnaires by the caregivers. It would be better to give standardized measures to directly examine people with ASD. The results from this survey study provide information to support the design of adequate interventions to meet the needs of adults with ASD, particularly those in Taiwan. It is important to develop adequate interventions to facilitate functional independence for this population. Future research using larger study populations with a comparison group is needed.

13 13 Acknowledgments Support for this research was provided by grant NSC C B from the Taiwan National Science Council. We thank the families who participated in this research and the parents autism associations in Taiwan.

14 14 References American Psychiatric Association (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: American Psychiatric Association. Ballabin-Gil, K., Rapin, I., Tuchman, R., & Shinnare, S. (1996). Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric Neurology, 15, Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after adolescence: Population-based year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 15(3), Centers for Disease Control and Prevention (2010). Prevalence of autism spectrum disorders-autism and developmental disabilities monitoring network, United States, MMWR Surveillance Summaries, 59(30), 956. Chang, C. F. (1996). The survey study on adolescents and adults with autism in Taiwan (in Chinese). Bulletin of Special Education, 14, Chen, S. Y. (2003). Parents or primary caregivers' future planning for their children with mental retardation (in Chinese). Bulletin of Special Education, 25, Chou, Y. C. (1996). The impact on families and factors affecting families decision to seek various care models for adults with developmental disabilities in Taiwan (in Chinese). Bulletin of Special Education, 14,

15 15 Chou, Y. C., & Schalock, R. L. (2007). Trends in residential policies and services for people with intellectual disabilities in Taiwan. Journal of Intellectual Disability Research, 51, Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, Esbensen, A. J., Bishop, S., Seltzer, M. M., Greenberg, J. S., & Taylor, J. L. (2010). Comparisons between individuals with autism spectrum disorders and individuals with Down syndrome in adulthood. American Journal on Intellectual and Developmental Disabilities, 115(4), Holbrook, M., & Skilbeck, C. E. (1983). An activities index for use with stroke patients. Age and Ageing, 12(2), Howlin, P. (2000). Outcome in adult life for more able individuals with autism or Asperger syndrome. Autism, 4, Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders, 5,

16 16 Lin, J.-D., Lin, L.-P., & Wu, J.-L. (2009). Administrative prevalence of autism spectrum disorders based on national disability registers in Taiwan. Research in Autism Spectrum Disorders, 3, Matson, J. L., Rivet, T. T., Fodstad, J. C., Dempsey, T., & Boisjoli, J. A. (2009). Examination of adaptive behavior differences in adults with autism spectrum disorders and intellectual disabilities. Research in Developmental Disabilities, 30, Poon, K. K. (2011). The activities and participation of adolescents with autism spectrum disorders in Singapore: Findings from an ICF-based instrument. Journal of Intellectual Disability Research, 55(8), Taiwan Department of Education (2010). Statistical Data. Retrieved July 21, 2011, from [Article in Chinese.] Taiwan Department of Health (2011). Statistical Data. Retrieved July 4, 2011, from [Article in Chinese.] Taiwan Ministry of the Interior (2008). Statistical Yearbook of Interior. Retrieved July 4, 2011, from [Article in Chinese.] Taiwan Ministry of the Interior (2011). Statistical Yearbook of Interior. Retrieved July 4, 2011, from [Article in Chinese.]

17 17 Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5),

18 18 Table 1. Demographic Characteristics of Adults with ASD (N = 81) Characteristics n % Mean (SD) Range Age (5.1) Gender Male Female Diagnosis Autistic Disorder Asperger s Syndrome Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) Severity of autism Mild Moderate Moderate to severe Severe Profound Educational Level No schooling/elementary school Junior high school Senior high school: general/special 25/ / education Bachelor's Degree Master's degree

19 19 Marital status Single Otherwise: separated

20 20 Table 2. Self-care Activities of Adults with ASD (N = 81) Categories Does tasks Needs assistance Does not do independently tasks at all n % n % n % Self-care activities feeding/eating bathing grooming dressing toileting mobility

21 21 Table 3. Instrumental Activities of Daily Living of Adults with ASD (N = 81) Total sample Autistic Asperger s PDD-NOS Disorder Syndrome Categories Mean (SD) Range Mean (SD) Mean (SD) Mean (SD) Domestic chores 11.8 (4.4) (4.6) 11.3 (3.0) 10.3 (5.1) Outdoor activities 11.9 (3.6) (3.8) 12.8 (2.8) 9.3 (2.9) Leisure/Work 9.3 (3.3) (3.4) 9.6 (2.2) 8.0 (2.9) Total 33.0 (9.9) (10.5) 33.8 (5.7) 27.5 (9.5) PDD-NOS, Pervasive Developmental Disorder-Not Otherwise Specified.

22 22 Table 4. Employment status and occupational activities of Adults with ASD (N = 81) Categories Total Autistic Asperger s PDD-NOS sample Disorder Syndrome n % n % n % n % Employment < 20 hours per week hours per week Schooling Staying at home PDD-NOS, Pervasive Developmental Disorder-Not Otherwise Specified.