J Autism Dev Disord (2011) 41:646653 DOI 10.

1007/s10803-010-1085-9

ORIGINAL PAPER

Family Report of ASD Concomitant with Depression or Anxiety Among US Children

Melissa L. McPheeters Alaina Davis J. Richard Navarre II Theresa A. Scott

Published online: 10 August 2010 Springer Science+Business Media, LLC 2010

Abstract The objective is to estimate prevalence of parent-reported depression or anxiety among children with ASD, and describe parental concerns for their children. The design is Analysis of National Survey of Childrens Health, 20032004. The participants are a national sample of 102,353 parents. 311,870 (544/100,000) parents of children ages 417 in the US reported that their child was diagnosed with autism. 125,809 also reported that their child had depression or anxiety (219/100,000). These parents report substantially higher concerns about their childs selfesteem, academic success, and potential to be bullied. Clinicians should take into account that children with ASD may face increased risk of depression or anxiety in adolescence. Coordinated care addressing social and emotional health in addition to clinical attention is important in this population. Keywords Autism spectrum disorder Psychiatric co-morbidities Depression Anxiety
M. L. McPheeters (&) Departments of Obstetrics and Gynecology and Medicine and Public Health, Vanderbilt University Medical Center, 2525 West End Ave., Suite 600, Nashville, TN 37203-1738, USA e-mail: melissa.mcpheeters@vanderbilt.edu A. Davis Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA J. R. Navarre II Adolescent Services, Rolling Hills Hospital, Franklin, TN, USA T. A. Scott Department of Biostatistics, Vanderbilt University Medical Center, Nashville, TN, USA

Introduction The association of Autism Spectrum Disorders (ASD) with other medical disorders, such as epilepsy (Canitano et al. 2005; Danielsson et al. 2005; Canitano and Canitano 2007), gastrointestinal problems (Horvath and Perman 2002; Molloy and Manning-Courtney 2003), and sleep disorders (Malow 2004), has been well documented. In addition, researchers and clinicians are increasingly describing a high rate of co-occurring psychiatric disorders in individuals with ASD. Estimates of prevalence of depression in this population range from 4 to 38%, although a lack of population-based studies with adequate numbers is noted (Hedley et al. 2006; Stewart et al. 2006). Nonetheless, the psychiatric symptoms experienced by children with ASD are often severe enough to require a psychiatric referral and become a primary focus of clinical interventions (Ghaziuddin 2005). A prior study identied a 15-fold increase in the odds of reporting a co-diagnosis of depression or anxiety among children whose parents report that they have autism compared to those who do not (Gurney et al. 2006). The reasons for these high observed rates of depression and anxiety are not entirely understood and may differ by ASD characteristics of the child. For example, children with Asperger syndrome may experience depression associated with increasing awareness of poor social integration, but this hypothesis is yet unproven (Hedley et al. 2006). Certainly if it is the case, we would expect to see increasing cases of depression among children with ASD as they get older and more socially aware and are in situations with greater social complexity. Regardless of its etiology, depression or anxiety presenting in a child with any autism spectrum disorder has the potential to create challenges for both the child and the family, and has been noted to be associated

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with increased maladaptive behaviors (Stewart et al. 2006). There are no widely used scales validated specically for identifying depression or anxiety in individuals with ASDs, particularly those individuals who are in lowerfunctioning groups (Stewart et al. 2006). Psychiatric problems often become apparent in settings such as school or the home. Because individuals with ASDs may not have the self-awareness or the language skills to convey changes in psychiatric states, clinicians often must rely on information from parents who observe the presentation of psychiatric symptoms. Therefore, understanding potential concerns of parents of children with ASD who may be experiencing psychiatric distress could be helpful to clinicians who provide care to these families. Our objectives were to estimate the frequency with which parents who reported having been told by a healthcare professional that their child had autism also reported having been told that their child had depression or anxiety. We further attempted to determine whether parents of school-aged children (middle school and adolescent) whose children reportedly had both autism and depression or anxiety reported different concerns for their children than other parents. We hoped to identify areas for future research that might be of relevance to clinicians who serve families of children with autism.

population-based estimates, each interview is then weighted. These weights compensate for varying probabilities of selection of households and children because of the sampling design, clustering of children within households, and nonresponse. Variables Assessed Presence of an autism spectrum disorder was ascertained through a question to the parent/guardian, Has a doctor or health professional ever told you that your child has autism? Presence of a diagnosis of depression or anxiety were ascertained through a parallel question to the parent/guardian, Has a doctor or health professional ever told you that your child has depression or anxiety? Based on these responses, we identied four distinct groupings: (1) no reported diagnosis of autism or depression/anxiety, (2) autism without depression/anxiety, (3) autism with depression/anxiety, and (4) depression/ anxiety without autism. We limited our initial estimates to children ages 417 because it can be difcult to diagnose depression in very young children. We further separated our description of parental concerns regarding school-age children into middle childhood and adolescence because it is reasonable to expect both the impact of the conditions and the parental concerns to differ by age of the child. A series of questions were asked of parents of children ages seven and above to rate their level of concern (a lot, a little, not at all) for several indicators of functioning, including self-esteem, learning difculties, stress coping and being bullied Analytic Approach The analysis was conducted in STATA 10 and survey research methods were used to incorporate the appropriate survey design, including sampling weights provided by the NSCH. Estimates are weighted to represent national levels. 95% condence intervals of the proportion estimates are also presented and are calculated using a logit transformation. Even though desired, we were unable to calculate covariate adjusted estimates because of the small unweighted frequencies of the Autism only and Autism ? Depression/Anxiety diagnosis groups. Where estimates were able to be compared statistically, we used pearson chi-squares for the difference in proportions. We relied primarily on examining the overlap between condence intervals to establish statistically signicant differences, as has been recommended for this type of data. This approach is more conservative than statistical comparison (Schenker and Gentleman 2001).

Methods Data Source The National Survey of Childrens Health (NSCH) is a nationwide cross-sectional household telephone survey in the United States sponsored by the Maternal and Child Health Bureau in partnership with the National Center for Health Statistics and the Centers for Disease Control and Prevention. The purpose of the NSCH was to produce national and state-specic prevalence estimates of health indicators and childrens experiences with the health care system. The telephone survey included questions about demographics, physical and mental health status, health insurance coverage, and access to and utilization of health care services. The NSCH used random-digit dialing to recruit and survey households with children younger than 18 years of age. One child in each household was randomly selected to be the subject of the survey, and the respondent for the interview was the parent or guardian who was most familiar with the childs health and health care. Interviews were conducted in English or Spanish. Estimates reported here are based on 102,353 interviews completed from January 2003 through July 2004. To produce

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Results Overview This study is nationally representative of children in the United States (Table 1). Based on weighted estimates, 311,870 (544 per 100,000) parents of children ages 417 in the US reported that their child had been diagnosed with autism, without specifying whether they were referring to a specic ASD or describing the means of diagnosis. Of these, 125,809 also reported having been told by a doctor or other health care professional that their child had depression or anxiety, for a rate of 219 per 100,000 children. Age distributions of children reported to have autism alone and autism plus depression or anxiety differed. For example, although 23.5% (95% CI: 17.3, 31.1) of children with a reported diagnosis of autism alone were in the 46 age group, only 5.6% (95% CI: 2.8, 10.9) of those with a dual diagnosis were in this age group (Table 1). By contrast, although 46.0% (95% CI: 32.1, 60.5) of the individuals with a reported co-diagnosis were adolescents (1117 years of age), 37.2% (95% CI: 29.6, 45.6) of the single diagnosis autism group was adolescent. The malefemale distribution was similar among children whose parents reported neither diagnosis or those who reported diagnosis of depression or anxiety alone, with 50.7% (95% CI: 50.0, 51.3) males and 56.1% (95% CI: 53.3, 58.9) males respectively. As expected, the diagnosis of autism was proportionately higher among males (78.7%; 95% CI: 71.6, 84.4). This was also true for children reportedly diagnosed with autism and depression or anxiety where 81.0% (95% CI: 70.6, 88.3) were male. In the population without a reported diagnosis, almost 6% of children were reported to have been diagnosed with ADD or ADHD (95% CI: 5.4, 6.0). This is in contrast to the 34.2% (95% CI: 25.8, 43.6) of children with autism only, and 44.3% (95% CI: 41.5, 47.2) of children with depression or anxiety (but no autism). Among children with a reported co-diagnosis of autism and depression/ anxiety combined, more than 60% were reported to also have been diagnosed with ADD/ADHD (63.4%; 95% CI: 49.1, 75.6). We compared proportions of covariates to ascertain whether there were differences in the groups with autism both with and without depression/anxiety. There were no signicant differences observed in racial distributions of diagnoses (p = 0.5406; Pearson Chi-Square test). Household educational levels did not differ by group (p = 0.4059); nor were differences in insurance status signicant (p = 0.6389).

Middle Childhood (710 Years of Age) A majority (60.0%; 95% CI: 46.2, 72.4) of parents of children ages 710 with ASD reported having been contacted more than once by the school about their childs behavior in the past year (Table 2). Parents who reported that their children had both ASD and depression or anxiety reported an even higher occurrence of contact with the school (87.6%; 95% CI: 68.3, 95.9). The proportion of parents concerned a lot about their childs self esteem in this age group was similar among those with no diagnosis and those with a diagnosis of autism only [27.3% (95% CI: 26.3, 28.5) and 31.3% (95% CI: 18.4, 47.8), respectively]. However, a co-diagnosis of depression or anxiety was associated with more than half (55.6%; 95% CI 29.3, 79.0) reporting a lot of concern, which is almost identical to the proportion of parents of a child with a depression or anxiety diagnosis but no autism who reported a lot of concern (56.3%; 95% CI: 50.0, 62.3). Parents whose children were co-diagnosed also reported increased concern (a little or a lot) about their child being bullied at school (69.9%) relative to parents of children with no diagnosis (39.7%), autism only (47.2%) or depression/anxiety only (62.3%). Adolescents (1117 Years of Age) Within the last 12 months, 16.3% (95% CI: 15.7, 17.0) of parents who had an adolescent child but reported no diagnosis were contacted by the school more than once regarding problems with their childs behavior compared to 49.5% (95% CI: 36.4, 62.7) of parents with a child who had a diagnosis of autism alone, 51.2% (95% CI: 47.9, 54.6) of parents with a child who had a diagnosis of depression or anxiety alone, and 68.3% (95% CI: 53.2, 80.4) of parents with a child who had a reported co-diagnosis of autism and depression or anxiety (Table 3). Parents of children who had a reported co-diagnosis of autism with depression or anxiety generally reported higher levels of concern regarding their adolescents overall wellbeing. With regard to their childs self-esteem, similar proportions of parents of teens with a reported co-diagnosis of autism and depression or anxiety (55.1%; 95% CI: 39.3, 69.9) and with depression or anxiety alone (52.8%; 95% CI: 49.5, 56.1) admitted to being concerned a lot versus 39.3% (95% CI: 27.9, 52.0) of parents of children with autism alone, and 27.7% (95% CI: 26.9, 28.5) of parents of children with no diagnosis. With regard to how their child copes with stress, 70.8% (95% CI: 53.3, 83.8) of parents of children with a reported co-diagnosis of autism and depression or anxiety admitted to being concerned a lot versus 63.0% (95% CI: 48.5, 75.5)

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Table 1 Descriptive characteristics (percent and 95% CI) of US Children Aged 417 years from the National Survey of Childrens Health Covariate Age (years) 46 710 1117 Missing Gender Male Female Missing Race White Black Multiracial Other Missing Respondent Mother Father Other Missing English Other Missing Poverty level (%) \200 200399 C400 Missing \HS HS grad [HS Missing None Disrupted SCHIP constant Private constant Missing No Yes Missing
a

No diagnosis Weighted N = 54,246,589.5

Autism Weighted N = 186,061.3

Autism ? depression/anxiety Weighted N = 125,808.9

Depression/anxiety Weighted N = 2,537,401.5

22.4 (21.8, 22.9) 28.0 (27.4, 28.5) 49.7 (49.0, 50.3) 0.0 (, ) 50.7 (50.0, 51.3) 49.2 (48.6, 49.9) 0.1 (0.1, 0.1) 67.1 (66.4, 67.7) 15.2 (14.7, 15.7) 3.0 (2.9, 3.3) 4.7 (4.4, 5.1) 10.0 (9.5, 10.4) 79.1 (785.5, 79.6) 16.5 (16.1, 17.0) 4.4 (4.1, 4.7) 0.0 (, ) 87.8 (87.3, 88.3) 12.1 (11.6, 12.7) 0.1 (0.0, 0.1) 35.1 (34.4, 35.7) 30.4 (29.8, 30.9) 24.5 (24.0, 25.0) 10.1 (9.7, 10.5) 7.5 (7.1, 8.0) 26.4 (25.8, 26.9) 65.6 (65.0, 66.3) 0.5 (0.4, 0.6) 5.2 (4.9, 5.5) 10.1 (9.7, 10.6) 21.3 (20.7, 21.9) 62.0 (61.4, 62.7) 1.4 (1.2, 1.5) 94.0 (93.7, 94.2) 5.7 (5.4, 6.0) 0.3 (0.3, 0.4)

23.5 (17.3, 31.1) 39.3 (31.2, 48.0) 37.2 (29.6, 45.6) 0.0 (, ) 78.7 (71.6, 84.4) 21.3 (15.6, 28.4) 0.0 (, ) 76.9 (68.2, 83.7) 13.5 (7.8, 22.3) 1.8 (0.8, 4.0) 3.6 (1.6, 7.9) 4.2 (1.9, 8.8) 80.4 (73.7, 85.7) 16.2 (11.3, 22.7) 3.4 (1.7, 6.6) 0.0 (, ) 98.2 (95.4, 99.3) 1.8 (0.7, 4.6) 0.0 (, ) 30.5 (22.8, 39.4) 33.9 (26.3, 42.4) 26.2 (20.1, 33.3) 9.5 (5.5, 15.9) 2.8 (1.4, 5.6) 20.5 (14.5, 28.3) 72.7 (63.6, 80.3) 4.0 (0.8, 18.1) 0.3 (0.1, 0.8) 12.3 (6.6, 21.7) 27.9 (21.5, 35.4) 58.6 (49.9, 66.7) 1.0 (0.2, 3.7) 65.5 (56.0, 73.8) 34.2 (25.8, 43.6) 0.3 (0.1, 1.4)

5.6 (2.8, 10.9) 48.4 (33.5, 63.5) 46.0 (32.1, 60.5) 0.0 (, ) 81.0 (70.6, 88.3) 19.0 (11.7, 29.4) 0.0 (, ) 68.9 (49.5, 83.4) 17.7 (6.8, 38.6) 1.3 (0.4, 4.7) 1.2 (0.3, 4.1) 10.9 (2.8, 34.1) 87.5 (79.7, 92.6) 10.1 (5.6, 17.4) 2.4 (1.0, 5.9) 0.0 (, ) 98.5 (92.9, 99.7) 1.5 (0.3, 7.1) 0.0 (, ) 45.7 (30.6, 61.5) 26.0 (16.8, 38.0) 23.5 (15.2, 34.5) 4.8 (1.5, 14.7) 0.9 (0.1, 4.8) 28.0 (15.2, 45.7) 71.0 (53.6, 83.9) 0.1 (0.0, 0.9) 0.3 (0.1, 1.1) 9.7 (5.0, 17.8) 35.3 (21.6, 51.8) 53.5 (38.4, 68.0) 1.2 (0.3, 4.5) 32.7 (21.2, 46.6) 63.4 (49.1, 75.6) 4.0 (1.1, 12.8)

5.5 (4.3, 7.0) 20.5 (18.3, 22.9) 74.0 (71.4, 76.4) 0.0 (, ) 56.1 (53.3, 58.9) 43.9 (41.1, 46.7) 0.0 (, ) 74.1 (71.2, 76.9) 11.6 (9.6, 13.9) 4.5 (3.5, 5.9) 3.0 (2.1, 4.4) 6.7 (5.1, 8.8) 80.3 (77.8, 82.5) 9.9 (8.4, 11.6) 9.8 (8.0, 11.8) 0.0 (0.0, 0.3) 93.7 (91.8, 95.1) 6.3 (4.9, 8.2) 0.0 (, ) 44.7 (41.8, 47.7) 28.1 (25.7, 30.5) 19.7 (17.8, 21.8) 7.5 (5.9, 9.3) 7.6 (5.9, 9.6) 27.4 (25.0, 30.1) 64.8 (61.9, 67.5) 0.2 (0.1, 0.6) 3.6 (2.4, 5.2) 11.4 (9.7, 13.4) 34.8 (32.0, 37.7) 49.6 (46.7, 52.4) 0.7 (0.4, 1.0) 54.0 (51.1, 56.8) 44.3 (41.5, 47.2) 1.7 (1.0, 2.8)

Primary language spoken in home

Highest level of education attained by anyone in home

Insurance status (w/in past 12 mos)

Child has ADD or ADHDa

According to a doctor/health professional

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Table 2 Children (ages 710) with and without autism in the National Survey of Childrens Health: parental concerns Covariate No diagnosis Weighted N = 15,165,483.1 Autism Weighted N = 73,074.1 Autism ? depression/anxiety Weighted N = 60,852.1 Depression/anxiety Weighted N = 519,379.2

Type of school child is enrolled in Public Private Homeschooled Not enrolled Missing 87.0 (86.2, 87.7) 11.3 (10.6, 12.0) 1.6 (1.4, 1.8) 0.1 (0.0, 0.1) 0.1 (0.1, 0.2)
a

78.1 (63.9, 87.8) 17.8 (8.9, 32.3) 2.4 (0.8, 6.8) 0.0 (, ) 1.8 (0.2, 11.6) 31.9 (21.0, 45.3) 4.0 (1.2, 12.7) 60.0 (46.2, 72.4) 4.1 (1.4, 11.3) 31.3 (18.4, 47.8) 28.6 (18.4, 41.7) 38.2 (25.8, 52.4) 1.9 (0.3, 11.1) 50.8 (36.8, 64.8) 36.3 (24.3, 50.4) 10.7 (5.0, 21.3) 2.1 (0.4, 10.6) 59.5 (45.6, 72.0) 27.8 (17.6, 41.0) 10.9 (5.2, 21.4) 1.8 (0.2, 11.6) 15.6 (9.1, 25.7) 31.6 (21.0, 44.6) 50.6 (36.6, 64.5) 2.1 (0.4, 10.6)

93.9 (79.1, 98.4) 6.1 (1.6, 20.9) 0.0 (, ) 0.0 (, ) 0.0 (, ) 11.2 (3.5, 30.8) 1.1 (0.1, 8.0) 87.6 (68.3, 95.9) 0.0 (, ) 55.6 (29.3, 79.0) 20.8 (8.7, 41.9) 23.6 (6.6, 57.7) 0.0 (, ) 70.6 (39.7, 89.7) 26.4 (8.2, 59.0) 2.6 (0.4, 14.6) 0.5 (0.1, 3.4) 87.0 (70.1, 95.1) 9.2 (2.9, 25.7) 3.7 (0.9, 14.2) 0.0 (, ) 33.2 (12.3, 63.8) 36.7 (17.4, 61.5) 30.1 (10.8, 60.6) 0.0 (, )

91.5 (87.3, 94.5) 5.6 (3.5, 8.9) 2.8 (1.1, 6.7) 0.0 (, ) 0.1 (0.0, 0.7) 31.5 (25.8, 37.8) 11.1 (8.4, 14.6) 53.4 (47.1, 59.5) 4.0 (1.8, 8.6) 56.3 (50.0, 62.3) 32.7 (27.3, 38.5) 10.9 (7.3, 16.0) 0.1 (0.0, 1.0) 69.3 (63.6, 74.5) 24.0 (19.6, 29.1) 6.2 (3.4, 10.7) 0.6 (0.1, 2.1) 44.4 (38.3, 50.6) 24.8 (19.8, 30.5) 30.7 (25.3, 36.7) 0.1 (0.0, 1.0) 24.9 (19.9, 30.7) 37.4 (31.5, 43.7) 37.5 (31.8, 43.7) 0.1 (0.0, 1.0)

No. times contacted by school about any problems Never 70.4 (69.2, 71.5) Once More than once Missing A lot A little Not at all Missing A lot A little Not at all Missing 12.1 (11.3, 12.9) 15.6 (14.7, 16.5) 2.0 (1.7, 2.3) 27.3 (26.3, 28.5) 26.1 (25.1, 27.2) 46.2 (45.0, 47.4) 0.3 (0.2, 0.5) 26.7 (25.6, 27.8) 39.4 (38.2, 40.6) 33.4 (32.2, 34.6) 0.5 (0.4, 0.7)

Level of concern: childs self-esteem

Level of concern: how child copes with stress

Level of concern: childs learning difculties A lot 20.8 (19.8, 21.8) A little Not at all Missing A lot A little Not at all Missing
a

19.1 (18.1, 20.1) 59.8 (58.6, 61.0) 0.3 (0.2, 0.4) 14.7 (13.9, 15.6) 25.0 (24.0, 26.1) 60.0 (58.8, 61.2) 0.2 (0.1, 0.4)

Level of concern: child being bullied by classmates

Percentages and 95% CIs presented Within last 12 months

of parents of children with autism alone, 62.5% (59.1, 65.7) of parents of children with depression or anxiety alone, and 26.8% (95% CI: 26.1, 27.6) of parents of children with no diagnosis. Almost half of parents of children with autism plus depression or anxiety (45.2%; 95% CI: 30.0, 61.3) were concerned a lot about the risk of their adolescent experiencing bullying, relative to just under one-third (28.6%; 95% CI: 18.9, 40.7) of parents of children with autism alone, one-fth (20.5%; 95% CI: 17.9, 23.4) of parents of children with depression or anxiety alone, and 12.3% (95% CI: 11.7, 12.9) of parents of children with no diagnosis.

Discussion There are several limitations to this analysis that warrant consideration. Indication of childrens status with regard to both autism and depression/anxiety are made by parent report; they are therefore limited by a potential lack of consistent approaches to diagnosis. There is no way to ascertain what proportion of the reported diagnoses had been obtained with standardized assessment tools, and further, whether a formal diagnosis had been made in the childs medical record. A parent hearing that their child would be treated for depressive symptoms might plausibly understand that indication to be a diagnosis of

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J Autism Dev Disord (2011) 41:646653 Table 3 Adolescents (ages 1117) with and without autism in the National Survey of Childrens Health: parental concerns Covariate No diagnosis weighted N = 26,948,482.5 Autism weighted N = 69,288.2 Autism ? depression/anxiety weighted N = 57,892.8

651

Depression/anxiety weighted N = 1,877,907.5

Type of school child is enrolled in Public Private Homeschooled Not enrolled Missing 88.3 (87.7, 88.8) 9.1 (8.7, 9.6) 2.0 (1.8, 2.3) 0.3 (0.3, 0.4) 0.2 (0.1, 0.3) 84.9 (66.0, 94.2) 12.2 (3.7, 33.1) 1.7 (0.4, 7.5) 0.0 (,) 1.3 (0.2, 7.3) 72.3 (57.6, 83.4) 23.6 (13.4, 38.3) 4.0 (1.3, 12.2) 0.0 (, ) 0.0 (, ) 15.8 (8.4, 27.7) 9.9 (3.3, 26.4) 68.3 (53.2, 80.4) 6.0 (2.2, 15.4) 55.1 (39.3, 69.9) 40.7 (26.0, 57.1) 4.3 (1.8, 9.7) 0.0 (, ) 70.8 (53.3, 83.8) 29.2 (16.2, 46.7) 0.0 (,) 0.0 (, ) 63.7 (46.9, 77.8) 30.0 (16.6, 48.0) 6.3 (2.8, 13.6) 0.0 (, ) 45.2 (30.0, 61.3) 29.3 (18.5, 43.0) 25.5 (15.7, 38.7) 0.0 (,) 85.9 (83.4, 88.1) 8.4 (6.7, 10.4) 3.9 (2.9, 5.3) 1.7 (0.8, 3.2) 0.1 (0.0, 0.3) 31.5 (28.5, 34.7) 11.5 (9.7, 13.5) 51.2 (47.9, 54.6) 5.8 (4.3, 7.7) 52.8 (49.5, 56.1) 35.9 (32.8, 39.3) 11.2 (9.3, 13.4) 0.1 (0.0, 0.3) 62.5 (59.1, 65.7) 32.5 (29.4, 35.8) 5.0 (3.6, 6.9) 0.0 (0.0, 0.1) 42.7 (39.3, 46.1) 23.6 (21.1, 26.3) 33.7 (30.7, 36.8) 0.0 (0.0, 0.1) 20.5 (17.9, 23.4) 24.9 (22.2, 27.9) 53.9 (50.5, 57.2) 0.7 (0.1, 3.3)

No. times contacted by school about any problemsa Never 70.4 (69.6, 71.3) 39.4 (27.9, 52.3) Once More than once Missing A lot A little Not at all Missing A lot A little Not at all Missing 10.6 (10.1, 11.2) 16.3 (15.7, 17.0) 2.6 (2.4, 3.0) 27.7 (26.9, 28.5) 27.7 (27.0, 28.5) 44.2 (43.3, 45.1) 0.4 (0.3, 0.5) 26.8 (26.1, 27.6) 40.5 (39.7, 41.4) 32.0 (31.2, 32.9) 0.6 (0.5, 0.8) 9.3 (4.6, 18.2) 49.5 (36.4, 62.7) 1.7 (0.4, 7.5) 39.3 (27.9, 52.0) 36.5 (25.0, 49.8) 23.6 (12.5, 40.2) 0.6 (0.1, 4.3) 63.0 (48.5, 75.5) 21.4 (13.4, 32.6) 15.1 (5.7, 34.2) 0.5 (0.1, 3.5) 67.1 (52.1, 79.2) 24.0 (13.0, 40.0) 8.5 (3.6, 18.9) 0.5 (0.1, 3.5) 28.6 (18.9, 40.7) 28.3 (19.1, 39.8) 43.1 (30.0, 57.3) 0.0 (,)

Level of concern: childs self-esteem

Level of concern: how child copes with stress

Level of concern: childs learning difculties A lot 20.2 (19.4, 20.9) A little Not at all Missing A lot A little Not at all Missing
a

19.3 (18.6, 20.0) 60.2 (59.3, 61.1) 0.3 (0.2, 0.4) 12.3 (11.7, 12.9) 18.5 (17.8, 19.2) 68.9 (68.1, 69.7) 0.3 (0.2, 0.4)

Level of concern: child being bullied by classmates

Percentages and 95% CIs presented Within last 12 months

depression. A parallel misunderstanding could occur with a parent hearing that their child is being screened for having symptoms reective of ASD. Therefore, this study should be read as a reection of parental concern in the presence of clusters of symptoms, rather than attempting to assign etiologic associations with either ASD or depression/ anxiety. Furthermore, the reported rate of ASD in our study is higher than that previously reported in smaller studies with precise diagnostic approaches (Chakrabarti and Fombonne 2005), possibly because the age range in this study does not precisely match that in previous research. Other potential reasons for this higher reported rate may be the lack of specicity of the question. Parents were asked whether a

healthcare provider had indicated that their child had autism, but the question did not specify any ASD or specic conditions on the spectrum. There also was no attempt to ensure that all children identied as having autism had been diagnosed with an accepted approach or tool. Therefore, it seems reasonable that the group of children identied as having an ASD in this study could include children evaluated but without a determinate diagnosis but where parents may misinterpret that process or believe their child to have been diagnosed. Nonetheless, the survey on which this analysis was based is designed to be nationally representative and the breadth and size of the National Survey of Childrens Health provides an opportunity to examine the potential

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scope of the challenges faced by parents of co-diagnosed children. Based on this analysis, the families of more than 125,000 children in the United States would be estimated to report having been told by a healthcare provider that their child has depression or anxiety in addition to autism. This represents 40% of the pediatric population whose parents report that they have autism in the United States. Our analysis conrms observations in smaller, clinical samples that high proportions of children with an autism spectrum disorder also exhibit symptoms of concomitant psychiatric conditions, such as depression or anxiety (Kim et al. 2000; Gillott et al. 2001; Hedley et al. 2006; Stewart et al. 2006). These may be features of the ASD itself or coexisting conditions. Regardless, this clustering of symptoms or diagnoses can be a source of concern for families. Reported presence of depression or anxiety increased in adolescence in this analysis as in prior studies, regardless of whether autism is present. However, their presence may be associated with particular challenges both in diagnosis and management of autistic patients. Depression in a teen with autism can present differently than teens in the nonASD population; for example, existing restricted interests may simply shift subtly to topics that are darker or more depressive in nature. Other hallmarks of a diagnosis of depression in the non-ASD population include decreased social interaction and isolationbut in a child already limited in their social abilities due to ASD, these can be difcult to observe (Ghaziuddin et al. 2002). Diagnosis may also be challenging due to the impaired communication skills that are characteristic of autism spectrum disorders (Lord and Paul 1997). Nearly one-half of individuals with autism are functionally non-verbal, and those who do display adequate verbal skills show decits in theory of mind thereby limiting their ability to process complex information (Tager-Flusberg 1992; Frith 1996; Pennington and Ozonoff 1996). Thus, individuals with autism have difculty conveying their mental states, experiences, and emotions, creating a relative paucity of information on which clinicians can base diagnosis of a co-morbid psychiatric disorder. Because both depression and anxiety may present as a mixed set of behavioral and physical symptoms that can be easily missed by clinicians not specically trained in understanding them, it is possible that despite the high numbers reported here, our analysis represents an underestimate of depression or anxiety among children with ASD. This is of great importance, as identifying underlying psychiatric illness can be essential to providing optimal treatment for a range of clinical and behavioral manifestations. Furthermore, the potential impact of psychiatric codiagnoses on the ability of the children with ASD to

achieve academic, social and communication goals is largely unexplored in the literature at this time and warrants further study. We observed very high rates also of ADD/ ADHD reported among children with autism and reported co-diagnoses; unfortunately, raw numbers were such that we could not examine this interaction statistically. It seems likely, however, that there could be substantial symptom overlap, especially between ADHD and anxiety. One would expect the effects of psychiatric co-morbidity to include worsened functional disability, increased health-care costs and utilization, decreased compliance with treatment regimens, and increased likelihood of medical complications including the possible risk for drugdrug interactions with the use of multiple medications (Gold 1993; Ghaziuddin 2005). Increased stress associated with caring for a child with ASD who is depressed or anxious is not unexpected (Gold 1993). Our study supports this consideration, with parents reporting a co-diagnosis also reporting greater concerns in key areas. Parents of children with ASD also report higher rates of a number of clinical conditions ranging from gastrointestinal distress to allergies and ear infections, along with increased utilization of medical care (Gurney et al. 2006). Therefore, the potential for families of children with autism to be managing multiple challenges simultaneouslyoften with a range of clinical and non-clinical providersis substantial, and coordination of care becomes increasingly important. Unfortunately, prior work has suggested that families of children with autism spectrum disorders often lack a medical home (Brachlow et al. 2007). In that light, our ndings from this large, nationally representative survey suggest that the perceived co-occurrence of ASD along with depression or anxiety is common among parents of affected children, and is also related to substantial parental concern about their childrens social well-being and functioning. As children with ASD move into adolescence, clinicians should be prepared to address family concerns about co-occurrence of psychiatric disorders through discussion with parents, evaluation of the need for services such as social groups, the need for discussion with educational providers, and other behavioral supports for the ASD population. They should be aware that a lack of coordinated care may mean that there may be unmet need for psychiatric assessment and care in this population. Clinicians managing care of children with ASD should be prepared to have conversations with the parents of their patients that include consideration of emotional, social and academic well-being, and should be attuned to the potential for depressive or anxiety symptoms as the children enter adolescence. Further research to explore in detail the emotional process of transitioning to adolescence among children with ASD is needed; as are studies of resource needs in this vulnerable population. Research and

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653 Gold, N. (1993). Depression and social adjustment in siblings of boys with autism. Journal of Autism and Developmental Disorders, 23(1), 147163. Gurney, J. G., McPheeters, M. L., et al. (2006). Parental report of health conditions and health care use among children with and without autism: National Survey of Childrens Health. Archives of Pediatrics and Adolescent Medicine, 160(8), 825830. Hedley, D., Young, R., et al. (2006). Social comparison processes and depressive symptoms in children and adolescents with asperger syndrome. Autism, 10(2), 139153. Horvath, K., & Perman, J. A. (2002). Autistic disorder and gastrointestinal disease. Current Opinion in Pediatrics, 14(5), 583587. Kim, J. A., Szatmari, P., et al. (2000). The prevalence of anxiety and mood problems among children with autism and asperger syndrome. Autism, 4(2), 117132. Lord, C., & Paul, R. (1997). Language and communication in autism. In D. J. Cohen & F. R. Volkmar (Eds.), Handbook of autism and pervasive developmental disorders (pp. 195225). New York: Wiley. Malow, B. A. (2004). Sleep disorders, epilepsy, and autism. Mental Retardation & Developmental Disabilities Research Reviews, 10(2), 122125. Molloy, C. A., & Manning-Courtney, P. (2003). Prevalence of chronic gastrointestinal symptoms in children with autism and autistic spectrum disorders. Autism, 7(2), 165171. Pennington, B. F., & Ozonoff, S. (1996). Executive functions and developmental psychopathology. Journal of Child Psychology and Psychiatry and Allied Disciplines, 37(1), 5187. Schenker, N., & Gentleman, J. F. (2001). On judging the signicance of differences by examining the overlap between condence intervals. The American Statistician, 55(3), 182186. Stewart, M. E., Barnard, L., et al. (2006). Presentation of depression in autism and asperger syndrome: A review. Autism, 10(1), 103116. Tager-Flusberg, H. (1992). Autistic childrens talk about psychological states: Decits in the early acquisition of a theory of mind. Child Development, 63(1), 161172.

practice focused on developing specic psychological approaches to treating individuals with autism and a psychiatric co-morbidity should continue and potentially increase in scope.

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