Research in Autism Spectrum Disorders

Research in Autism Spectrum Disorders 5 (2011) 584 591 Contents lists available at ScienceDirect Research in Autism Spectrum Disorders Journal homepage: http://ees.elsevier.com/rasd/default.asp Factors influencing time lag between first parental concern and first visit to child psychiatric services in children with autism spectrum disorders in Japan Takeo Fujiwara a, *, Makiko Okuyama b, Keiichi Funahashi b a Section of Behavioral Science, Department of Health Promotion, National Institute of Public Health, 2-3-6 Minami, Wako-shi, Saitama 351-0197, Japan b Department of Psychosocial Medicine, National Center for Child Health and Development, 2-10-1, Okura, Setagaya-ku, Tokyo 157-0197, Japan ARTICLE INFO ABSTRACT Article history: Received 29 June 2010 Accepted 12 July 2010 Keywords: Autism spectrum disorder Pervasive development disorders Asperger s syndrome Child psychiatry Mental health system The early assessment of autism spectrum disorders (ASDs) is important to improving patient outcomes, allowing family members to prepare for and cope with symptoms, and assisting in plans for appropriate educational opportunities. However, little is known about factors that influence the time lag between the parents first concerns and the first visit to a hospital that offers child psychiatric service. We investigated factors associated with the time lag between the first parental concern and the first visit to a hospital that offers child psychiatric services, among children in Japan with ASDs. A questionnaire was distributed to caregivers of ASD children, through child psychiatrists who work at 16 leading hospitals in child psychiatric services in Japan (N = 1513). We found that a younger child age, a caregiver s lack of knowledge of whom to consult when first concerned about symptoms, and the typically indirect means of attaining services (especially without a referral) each heightened the odds of there being a longer time lag. Visiting another institution, and then going to a hospital that offers child psychiatric services without a referral, was a typical scenario that often led to such time lags. A national health policy to facilitate a referral system that coordinates hospitals that offer child psychiatric services with other medical institutions, the health sector, the welfare sector, and educational institutions is needed, to promote the timely provision of child psychiatric services. ß 2011 Elsevier Ltd. All rights reserved. 1. Introduction Autism spectrum disorders (ASDs) comprise a set of complex neurodevelopmental disorders that affect social, communication, and behavioral development in those afflicted. The estimated prevalence of ASDs in the US is 110 per 10,000 individuals (Kogan et al., 2009); there is a concern of a potential increase in ASD prevalence, which is supported by estimates from special education and other service-provision agencies (Chakrabarti & Fombonne, 2005; Newschaffer, Falb, & Gurney, 2005). A similar situation has been observed in Japan: the cumulative incidence rate of autism, diagnosed on the basis of ICD- 10 and for individuals up to 5 years of age, was 16.2 per 10,000 in 1988; that figure increased to 27.3 per 10,000 in 1991 (Honda, Shimizu, Imai, & Nitto, 2005). A recent study reports that the prevalence of pervasive developmental disorders, diagnosed by child psychiatrists using DSM-IV, was 1.81% from 1994 to 1996 a substantial increase from the prevalence rate of 1981 (0.16%) (Kawamura, Takahashi, & Ishii, 2008). Abbreviations: ASD, autism spectrum disorder; DSM, diagnostic and statistical manual for mental disorder; ICD, international classification of disease. * Corresponding author. Tel.: +81 48 458 6193, fax: +81 48 469 3716. E-mail address: tfujiwara@niph.go.jp (T. Fujiwara). 1750-9467/$ see front matter ß 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.rasd.2010.07.002

T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 585 The early diagnosis of an ASD is important, because early intervention is a fundamental treatment approach and children with an ASD should participate in therapeutic programs as early as possible (Charman & Baird, 2002). Expeditious behavioral and educational interventions can improve outcomes, especially in terms of cognition, peer interactions, and language development (McEachin, Smith, & Lovaas, 1993; Ozonoff & Cathcart, 1998; Rogers, 1998). Knowing that their child has an ASD and is receiving therapy may help parents cope better with the situation (Lord, Rutter, & Le Couteur, 1994). However, the literature constantly reports significant time lags between the time the parents first have concerns and when the child is first diagnosed with an ASD (Wiggins, Baio, & Rice, 2006). For example, in a recent population-based study in Sweden, it was found that there was a delay of 20 60 months between parental suspicion and diagnosis by a medical professional (Sivberg, 2003). Similarly, Wiggins et al. (2006) report a mean delay between first evaluation and first ASD diagnosis of 13 months, using a population-based sample in Atlanta. Thus, to address this issue and help provide early healthcare interventions to those who need them, it is necessary to elucidate the factors associated with a delay between the first parental concern and when the child is diagnosed. Variations in previous studies time lags refer to demographic factors and severity of ASD (Sivberg, 2003; Wiggins et al., 2006); however, there has been a dearth of research that examines how the Japanese health system itself affects the delay of ASD diagnosis. Japan has a unique healthcare system; it features universal health insurance; fully subsidized children s medical expenditures, with upper limits dictated by income (details varies by municipalities); and an egalitarian healthcare system in which patients can visit any hospital even a university hospital without a referral (Ikegami & Campbell, 1999). However, due to the egalitarian nature of the healthcare system and its ease of access in terms of paying medical expenditures, parents of children with ASDs might experience difficulties in determining where to visit, or they may visit institutions inappropriate to their needs; such circumstances can incur delays in visiting a hospital that offers child psychiatric services, where a child psychiatrist can diagnose ASDs and provide interventions. Therefore, the purpose of this study is to investigate the demographics, symptoms, and healthcare system factors associated with a time lag between the time parents first have concerns about their child to when they visit a hospital that offers child psychiatric services and can thus diagnose and provide interventions, for children in Japan with ASDs. 2. Materials and methods 2.1. Participants The respondents to the questionnaire driving this study were the caregivers of children with mental problems who visited one of the 16 leading hospitals in Japan that specialize in child psychiatric services. A questionnaire was disseminated to all new patients who had visited one of the aforementioned 16 hospitals between September 2008 and March 2009, and those who were continuing treatment in September 2008. We asked the child psychiatrists in charge of the examinations and patient treatment to hand questionnaires directly to the parents, to enhance the response rate. The questionnaire was anonymous, and the parents were asked to return completed questionnaires by mail to the National Center for Child Health and Development. We distributed the questionnaires to 11,577 caregivers of patients and received a total of 4323 responses (response rate: 34%). From those responses, we selected a sample of children (N = 1513) aged <19 years who had been diagnosed with autism disorder, general ASD, Asperger s syndrome, or a pervasive developmental disorder not otherwise specified. Children living in welfare facilities were excluded. 2.2. Measures In the survey, we asked questions about demographic characteristics: current age and gender of child; child s age at parents first concerns about mental problems; mother s and father s respective levels of education; annual household income; number of family members living in the household; number of siblings the child has; and whether living with mother, father, elder siblings, younger siblings, grandmother, grandfather, or others. In addition, family histories of ASD were investigated, including those individuals relationships to the child. Regarding symptoms, the following were listed in the questionnaire, and participants were requested to check all that applied: developmental delays, problems interacting with others, problems with persistence, behavioral problems, and not attending school. Further, to assess degree of impairment, the level of functioning when the child first visited the hospital offering child psychiatric services was retrospectively reported using the following 6-point Likert scale: (1) functions well in family and school life, (2) no more than a slight impairment of function in family or school life, and not considered deviant by those who encounter the child, (3) persistent difficulties in family or school life, but resolved with usual coping measures, (4) moderate degree of impairment of function in family or school life, which requires special support (e.g., use of special education, mother had to quit her job), (5) major impairment of function in family or school life, with danger of hurting others or self, and (6) severe impairment of function in family or school life, which requires constant supervision. This scale was developed based on the children s global assessment scale (range: 1 100), which also assesses the level of functioning of children with mental problems (Schaffer et al., 1983). To identify healthcare system factors namely, difficulties experienced by the parents in determining which institution to consult when they were first concerned about their child was assessed via a five-point Likert scale: (1) very difficult, (2) difficult to some extent, (3) not sure, (4) not so difficult, and (5) not difficult at all. In addition, to reveal the route taken by the

586 T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 parents in visiting a hospital that offers child psychiatric services, we asked whether they directly visited the hospital or were referred by another institution; we also asked about the type of institution and whether or not they had been referred by the initial institution. Furthermore, the commute time from their home to the hospital was asked, as a proxy of hospital distribution within the area. Finally, we asked about the time lag between the day when the parents first had concerns about their child and the day when they first visited a hospital that offers child psychiatric services. 2.3. Analysis The outcome variable namely, the time lag was largely skewed to the right; the time lag was recategorized based on distribution, and the ordered logistic regression was used to determine the associations among demographics, symptoms, and healthcare system factors. First, a bivariate model was employed to investigate the associations among the factors. Second, in model 1, the demographic factors were included in the model, followed by the model including all the symptom factors (model 2) and the model including all the healthcare system factors (model 3). Finally, all the factors were incorporated into a single model (model 4). Stata SE 10 was used for analysis. 2.4. Ethics committee approval Our study was approved by the Ethics Committee (i.e., Institutional Review Board) of the National Center for Child Health and Development. 3. Results The demographic characteristics of the sample are shown in Table 1. Most of the respondents were the mother (93.6%); the mean age of their children with ASDs was 11.9 years (standard deviation [SD] = 5.3), but ranged from 1 to 48 years. The majority of the children with ASDs were male (80.1%). The child s mean age at parents first concern about symptoms was 4.7 years (SD = 3.7). About one-half of the mothers had graduated from high school or less, as did 43% of fathers. About 26% of respondents cited an annual household income of less than \4 million (approximately US $40,000), which is considered a below-average income in Japan. Around 40% of the children in question had elder or younger siblings, and more than 10% of them lived with grandparents. In all, 3.7% of the children studied had family histories of ASDs. Table 2 lists the symptoms among children with ASDs when they first visited a hospital that offers child psychiatric services. The most frequent symptom was problems interacting with others (68.5%), followed by behavioral problems (56.5%), developmental delays (55.2%), and problems with persistence (47.1%); around 16% of the children had visited the hospital for not attending school. All were diagnosed with an ASD. Regarding degree of impairment, 61% of the sample made use of special supports or constant supervision. Details of how the respondents came to visit a hospital that offers child psychiatric services are shown in Table 3, as healthcare system characteristics. Around 68% of the sample had experienced some difficulties in determining whom they should consult with concerns about their children s perceived mental health problems. Another 9.2% directly visited a hospital that offers child psychiatric services, while the majority visited other institutions first, including other medical institutions (pediatric clinics, psychiatric clinics, etc.) or facilities pertaining to the health, welfare, or education sectors. About one-half of that majority was referred to a hospital that offers child psychiatric services, while the other half were dissatisfied with the initial institution and proactively visited a hospital that offers child psychiatric services, without a referral. The mean commute time from home to the hospital was around 1 h. Regarding the waiting time between making an appointment and receiving an actual consultation, the majority (72%) waited less than 3 months, but 12% had to wait for more than 1 year. Finally, the mean time lag between the first parental concern and the first visit to a hospital that offers child psychiatric services was 2.9 years (SD = 3.0; range: 0.01 23 years). The associations between each of demographics, symptoms, and healthcare system factors and categorized time lag between first parental concern and first visit to a hospital that offers child psychiatric services are shown in Table 4. In the bivariate model, the following factors were significantly associated with a longer time lag: younger age when parents were first concerned about symptoms; annual household income of less than \2 million; not living with father, elder sibling, grandmother, or grandfather; child had problems interacting with others, problems with persistence, or behavioral problems; parents had difficulties determining whom to consult; parents had visited the hospital via other institutions, especially without a referral; a longer commute time; and a longer waiting time. The following factors were found not to be associated with the degree of time lag: child s gender, mother s and father s respective levels of education, family history of ASD, and degree of impairment. In model 1, only demographic factors were adjusted; doing so revealed that annual household income and living with a grandmother or grandfather were not significantly associated with a longer time lag. Model 2 adjusted for symptoms simultaneously; similarly, problems with persistence were no longer significantly associated with a longer time lag. In model 3, healthcare system factors were adjusted; all variables remained significant, although the odds ratios were attenuated. In model 4, all factors were simultaneously adjusted. In that model, having a younger sibling and not attending school became significant risk factors, and having developmental delays became significant protective factors in terms of the time lag; however, having an elder sibling became nonsignificant. As for the child s age at first parental concern, an age of less

T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 587 Table 1 Demographic characteristics of sample. Characteristics Mean or N SD or % Respondent s relationship to child Mother 1412 93.6 Father 82 5.4 Other 14 0.9 Age of child (years) 11.9 5.3 Gender of child Male 1210 80.1 Female 300 19.9 Age of child when parent first concerned (years) 4.7 3.7 Age of child when parent first concerned 0 years old 30 2.0 1 2 years old 532 35.2 3 5 years old 487 32.2 6 12 years old 377 24.9 13 18 years old 87 5.8 Mother s education Junior high school 52 3.5 High school 640 43.6 Some college 457 31.2 College+ 318 21.7 Father s education Junior high school 67 4.7 High school 545 38.4 Some college 72 5.1 College 646 45.5 Graduate school 90 6.3 Annual household income (million yen) <2 99 6.9 2 4 272 19.1 4 6 380 26.6 6 8 329 23.0 8 10 186 13.0 10+ 162 11.3 Number of family members living with 2 47 3.2 3 330 22.2 4 675 45.4 5 260 17.5 6 119 8.0 7+ 57 3.8 Number of siblings 0 414 27.4 1 797 52.7 2 256 16.9 3+ 46 3.0 Living with Mother 1462 96.6 Father 1295 85.6 Elder sibling 573 37.9 Younger sibling 673 44.5 Grandmother 262 17.3 Grandfather 165 10.9 Other 52 3.4 Has a relative with an ASD (relationship to child) Total 56 3.7 Parent 3 5.4 Sibling 22 39.3 Uncle or aunt 4 7.1 Cousin 14 25.0 Other/unknown 13 23.2

588 T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 Table 2 Symptom characteristics among sample patients. N % Main symptoms prompting a visit to a hospital that offers child psychiatric services Developmental delays 835 55.2 Problems interacting with others 1037 68.5 Problems with persistence 712 47.1 Behavioral problems 855 56.5 Not attending school 237 15.7 Degree of impairment 1: Functions well in family and school life 30 2.1 2: No more than a slight impairment of function in family or school life, and not considered deviant by those 237 16.5 who encounter the child 3: Persistent difficulties in family or school life, but resolved with usual coping measures 291 20.3 4: Moderate degree of impairment of function in family or school life, which requires special support 368 25.6 5: Major impairment of function in family or school life, with danger of hurting others or self 279 19.4 6: Severe impairment of function in family or school life, which requires constant supervision 231 16.1 than 1 year was strongly associated with a longer time lag compared to an age of 3 5 years (odds ratio [OR]: 4.05; 95% confidence interval [CI]: 1.92 8.52). On the other hand, an age at first parental concern of 13 18 years was strongly associated with a shorter time lag, compared to an age of 3 5 years (OR: 0.12; 95% CI: 0.07 0.19). Moreover, in terms of healthcare system factors, visiting a hospital that offers child psychiatric services via another institution and without a referral was strongly associated with a longer time lag, compared to making a direct visit (OR: 3.72; 95% CI: 2.51 5.49), followed by visiting the hospital via another institution with a referral (OR: 1.95; 95% CI: 1.32 2.87). Table 3 Healthcare system characteristics in visiting a hospital that offers child psychiatric service. N or mean % or SD Difficulties in determining whom to consult Very difficult 622 41.7 Difficult to some extent 396 26.5 Not sure 98 6.6 Not so difficult 274 18.4 Not difficult at all 103 6.9 The route to visiting the hospital that offers child psychiatric services Direct 139 9.2 Via another institution 1372 90.8 Other medical institutions 400 30.1 Health sector 447 33.6 Welfare sector 185 13.9 Educational sector 149 11.2 Other institutions 150 11.3 Referred to the hospital that offers child psychiatric services by a previous institution 616 46.3 No referral 716 53.8 Commute time from home to the hospital (min) 58.5 33.7 Waiting time to visit the hospital On the same day 53 3.9 <1 week 80 5.9 <1 month 392 29.0 <3 months 445 33.0 <6 months 163 12.1 <1 year 52 3.9 1+ year 165 12.2 Time lag between the first parental concern and the first visit to the hospital that offers child 2.9 3.0 psychiatric services (years) <6 months 207 14.1 6 12 months 171 11.7 1 2 years 291 19.8 2 3 years 214 14.6 3 4 years 155 10.6 4 5 years 121 8.3 5+ years 308 21.0

T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 589 Table 4 Odds ratio of demographics, symptoms, and healthcare system factors for categorized time lags between the age of first parental concern and the age of first visit to a hospital that offers child psychiatric services, by ordered logistic regression. Bivariate Model 1 Model 2 Model 3 Model 4 OR 95% CI OR 95% CI OR 95% CI OR 95% CI OR 95% CI Demographic factors Gender of child Male Reference Reference Reference Female 1.08 0.86 1.35 1.16 0.91 1.49 1.21 0.93 1.58 Age of child when first concerned about symptoms 0 years old 3.86 1.97 7.58 3.55 1.72 7.31 4.05 1.92 8.52 1 2 years old 0.86 0.69 1.07 0.92 0.73 1.17 1.07 0.83 1.39 3 5 years old Reference Reference Reference 6 12 years old 0.34 0.26 0.43 0.30 0.23 0.39 0.23 0.17 0.32 13 18 years old 0.17 0.12 0.25 0.16 0.11 0.24 0.12 0.07 0.19 Mother s education Junior high school Reference Reference Reference High school 1.09 0.63 1.90 1.14 0.60 2.15 1.07 0.55 2.09 Some college 0.98 0.56 1.72 0.88 0.46 1.69 0.79 0.40 1.58 College+ 1.11 0.63 1.97 0.89 0.45 1.76 0.72 0.35 1.48 Father s education Junior high school Reference Reference Reference High school 0.96 0.61 1.51 0.94 0.58 1.54 0.83 0.49 1.40 Some college 0.70 0.39 1.26 0.77 0.41 1.45 0.67 0.34 1.32 College 1.06 0.68 1.66 1.19 0.71 1.98 1.06 0.61 1.84 Graduate school 0.90 0.51 1.59 0.84 0.44 1.60 0.74 0.37 1.50 Annual household income (million yen) <200 Reference Reference Reference 200 400 0.58 0.38 0.87 0.68 0.40 1.16 0.71 0.40 1.26 400 600 0.67 0.45 0.99 0.92 0.53 1.60 0.80 0.45 1.45 600 800 0.70 0.47 1.05 1.00 0.57 1.74 0.93 0.51 1.69 800 1000 0.68 0.43 1.05 1.09 0.60 1.98 1.02 0.54 1.93 1000+ 0.85 0.54 1.34 1.41 0.77 2.58 1.15 0.60 2.20 Living with Mother 1.33 0.82 1.18 1.57 0.69 3.59 1.52 0.62 3.70 Father 0.71 0.55 0.92 0.43 0.29 0.65 0.44 0.28 0.67 Elder sibling 0.71 0.59 0.86 0.69 0.55 0.85 0.81 0.65 1.02 Younger sibling 1.15 0.96 1.38 1.17 0.95 1.44 1.41 1.13 1.77 Grandmother 0.69 0.54 0.88 0.93 0.66 1.32 1.01 0.69 1.47 Grandfather 0.66 0.50 0.89 0.85 0.56 1.30 0.90 0.57 1.42 Other 0.88 0.55 1.43 0.67 0.38 1.17 0.63 0.35 1.14 Has a relative with an ASD 0.84 0.53 1.32 0.95 0.58 1.55 1.07 0.64 1.78 Symptom factors Developmental delays 1.17 0.98 1.41 1.11 0.91 1.35 0.64 0.50 0.82 Problems interacting with others 1.69 1.39 2.06 1.58 1.26 1.98 1.58 1.23 2.03 Problems with persistence 1.26 1.05 1.51 0.95 0.76 1.18 0.82 0.64 1.05 Behavioral problems 1.49 1.24 1.79 1.30 1.05 1.60 1.17 0.92 1.48 Not attending school 0.93 0.71 1.20 1.02 0.77 1.34 1.51 1.09 2.11 Degree of impairment 1 3 Reference Reference Reference 4 6 1.04 0.86 1.26 0.97 0.91 1.04 0.95 0.88 1.03 Healthcare system factors Difficulties in determining whom to consult Very/to some extent difficult 1.46 1.20 1.78 1.27 1.04 1.56 1.36 1.09 1.71 Not sure/not so/not at all difficult Reference Reference Reference Route Direct Reference Reference Reference Via other institution, referral 2.16 1.53 3.05 2.06 1.44 2.96 1.95 1.32 2.87 Via other institution, no referral 4.19 3.00 5.92 3.74 2.60 5.38 3.72 2.51 5.49 Commute time Unit: 30 min 1.17 1.08 1.26 1.13 1.04 1.23 1.13 1.02 1.24 Waiting time for appointment 3 months or less Reference Reference Reference 3+ months 1.53 1.25 1.87 1.47 1.20 1.81 1.28 1.02 1.61 Bold value significance level p < 0.05.

590 T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 4. Discussion This study examined the factors that influence the time lag between the first parental concerns about their child s mental or behavioral symptoms and the first visit to a hospital that offers child psychiatric services, where the diagnosis and treatment of ASDs is possible. We found the mean time lag to be 2.9 years, which is much longer than that reported by Wiggins et al. (2006) in the US city of Atlanta (i.e., 13 months). Several factors were found to be risk factors for a longer time lag: younger age at first parental concern, living with younger siblings, problems in interacting with others or not attending school, parents difficulties in determining whom to consult, parents having visited the hospital via other institutions, longer commute times, and longer waiting times. Meanwhile, there were a number of protective factors for the time lag: older age at first parental concern, living with father, and having developmental delays. The gender of the child, the socioeconomic status of parents, and degree of impairment were not associated with time lag. The current study is the first to report the factors associated with the aforementioned time lag, using a large sample of children with ASDs collected throughout Japan. Such information is important, because targeted early intervention for children with ASDs is recommended in helping them gain expressive and receptive language and pivotal social skills (Howlin, Magiati, & Charman, 2009; Landa, 2007). The association between the age at first parental concern about symptoms and the time lag is not surprising. When the child s age at the parents first concerns about a symptom is less than 1 year, it is difficult for them to visit a hospital that offers child psychiatric services, because that particular symptom might be consider inaccurate or otherwise unacceptable for children of that age. However, there were significant differences in time lag between preschool age and school age: in comparison to cases where the child was 3 5 years old at first parental concern, those in which the child was 1 2 years old were not significantly different, while those in which the child was 6 12 or 13 18 years old had significantly shorter time lags. This suggests that it took a longer time for children with ASDs at preschool age to visit a hospital that offers child psychiatric services, although the parent was already concerned about symptoms when the child was at an early age. Schoolage children might experience no problems in visiting a hospital that offers child psychiatric services, as they can take advantage of the strong network already established between schools and hospitals. However, this network is not available to children under the age of 5 years, as Japan does not have preschool for children under the age of 2 years, and networking between kindergarten schools (for ages 3 5 years) and hospitals might be weak. Japan has a mandatory health-checkup system that requires a doctor s visit at the age of 18 months, by the health sector; however, the provision of appropriate referrals between the health sector and hospitals that offers child psychiatric service might be insufficient. As we define the time lag as being between the time when parents are first concerned and when they make their first visit to a hospital that offers child psychiatric services, it is not surprising that those who first visited other institutions showed a longer time lag. Interestingly, those who visited other institutions and then visited a hospital that offers child psychiatric services without a referral a scenario that describes the activities of one-half of all respondents showed longer time lags than those with referrals. This suggests that a large proportion of parents of children with ASDs were not satisfied with the diagnosis or treatment at their initial institutions, although pediatric or psychiatric clinics were included. These other institutions might have few networks with hospitals that offer child psychiatric services; therefore, they might have a higher threshold of referrals to the hospitals for children with ASDs. It is recommended that a network be created between local institutions (i.e., those in the medical, headrlth, welfare, and educational sectors) and hospitals that offer child psychiatric services, so that they can share information pertaining to updated diagnostic evidence and to which children may have ASDs. Furthermore, it is recommended that other institutions at least primary healthcare providers refer children with ASDs as soon as possible, in order to initiate early intervention (Dulcan et al., 1990; Menahem, 1987). Family composition was also found to correlate with time lag, and there are some possible explanations for this. Living with the father might facilitate the collection of information pertaining to hospitals that work with children diagnosed with an ASD. Such may also be the case for children living with elder siblings, as networking with the parents of those siblings friends may likewise facilitate information-gathering. It was interesting to find that having a younger sibling was a risk factor for a longer time lag; this suggests that parents may not be able to readily visit hospitals that offer child psychiatric services especially if a long commute is involved as it would involve bringing younger siblings with them. Regarding symptoms, it was surprising that the degree of impairment did not correlate with time lag. Previous studies report that more severe impairments generally led to longer time lags (Sivberg, 2003; Wiggins et al., 2006). In Japan, a small degree of impairment tended to incur a longer time lag, due to a lack of networking between local sectors and hospitals that offer child psychiatric services; this situation results in a time lag similar to that seen with children with moderate to severe degrees of impairment. For each symptom, it is understandable why problems in interacting with others would incur a longer time lag, because it is difficult for parents to distinguish whether a problem in interacting with others is typical or not. On the other hand, developmental delays were associated with a shorter time lag, after adjusting for the child s age at first parental concern; this is not surprising, because a developmental delay is a clear manifestation of symptoms. Considering these facts, early screening tools for ASDs such as the Japanese version of the M-CHAT (Inada, Kamio, & Kayama, 2010) should be widely disseminated for the appropriate assessment of ASDs. Interestingly, socioeconomic factors were not associated with the time lag. Previous studies report that being poor is likely to restrict access to care in the US for children with ASDs (Liptak et al., 2008; Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). It is uncertain whether the lack of association between socioeconomic status and time lag is due to Japan s

T. Fujiwara et al. / Research in Autism Spectrum Disorders 5 (2011) 584 591 591 egalitarian healthcare system or its fully subsidized children s medical expenditure policy; in any case, less disparity was found in terms of time lag between first parental concern and first visit to the hospital that offers child psychiatric services. This study has several limitations, each of which must be addressed. First, this study does not involve a representative sample of children with ASDs in Japan, although the 16 hospitals involved cover every part of Japan geographically. Second, the relatively low response rate (i.e., 34%) no doubt induced a sampling bias: those whose children showed severe impairments may have refused to participate. However, as the patients who continued to visit the hospital were included, we were able to obtain cases in which the children showed severe impairments. Third, the sample namely, children with ASDs was collected through hospitals that offer child psychiatric services, which might be weighted on ASD cases featuring severe impairments. Community-based studies might add to the findings, in that they would be more likely to include ASD cases with low degrees of impairment. Fourth, a recall bias cannot be avoided, due to the study s retrospective design: the longest time lag was 23 years. Further research is warranted to replicate the findings, using a prospective design study. 5. Conclusion Those who visited other institutions and then visited a hospital that offers child psychiatric services without a referral can be considered key contributors to the time lag assessed in this study. Health policies are needed that facilitates networking between hospitals that offer child psychiatric services and other medical institutions, as well as with the health, welfare, and educational sectors; it is by instituting such policies that the timely provision of child psychiatric services can be promoted in Japan. In addition, to follow-up on parental concerns regarding symptoms, the use of screening tools for early-stage ASDs such as the 18-month health checkup should be considered, to provide early intervention for children who may have an ASD. Acknowledgements This research is supported by Research on the Healthcare System for Children with Mental Problems and Development of Child Psychiatrists, in Research on Children and Families, Health, and Labor Sciences Research Grants from Ministry of Health, Labor, and Welfare (PI: Makiko Okuyama). References Chakrabarti, S., & Fombonne, E. (2005). 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