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ORIGINAL PAPERLoneliness and Social Support in Adolescent Boys with AutismSpectrum DisordersMathias Lasgaard Annette Nielsen Mette E. Eriksen Luc GoossensPublished online: 15 August 2009 Springer Science+Business Media, LLC 2009Abstract Loneliness and perceived social support wereexamined in 39 adolescent boys with autism spectrum dis-orders (ASD) by means of a self-labeling loneliness mea-sure, the UCLA Loneliness Scale (third version), and theSocial Support Scale for Children. Twenty-one percent ofthe boys with ASD described themselves as often or alwaysfeeling lonely. Compared with 199 boys from regularschools in a national probability study, ASD was stronglyassociated with often or always feeling lonely (OR: 7.08,p \ .0005), as well as with a higher degree of loneliness(F(1,229) = 11.1, p \ .005). Perceived social support fromclassmates, parents, and a close friend correlated negativelywith loneliness in ASD. The study, therefore, indicates ahigh occurrence of loneliness among adolescent boys withASD and points at perceived social support as an importantprotective factor.Keywords Autism spectrum disorders Loneliness Social support Peer relationships AdolescenceIntroductionA hallmark of autism spectrum disorders (ASD) is poorsocial functioning, which acts as an impediment to thedevelopment of social relationships. According to theDSM-IV (American Psychiatric Association 2000), thesocial deficit in ASD is marked by impairment in the use ofnonverbal behaviors, failure to develop peer relationships,a lack of seeking to share enjoyment, interests, orachievements with others, and a general lack of social oremotional reciprocity. Empirical evidence further suggeststhat children and adolescents with ASD are generallycharacterized by poor friendships, often lack social skills,and commonly experience peer rejection (Bauminger andKasari 2001; Orsmond et al. 2004). Moreover, studies ofgeneral populations indicate that children who are rejectedand lack friends in elementary school are more likely to belonely in adolescence (Pedersen et al. 2007). Furthermore,lack of social integration and rejection by peers in ado-lescence is reflected in a higher degree of loneliness(Goswick and Jones 1982; Parkhurst and Asher 1992). Thepresent study investigates whether adolescents with ASDare more likely to report feeling lonely than typicallydeveloping adolescents. Additionally, the study investi-gates the relationship between loneliness and perceivedsocial support.LonelinessLoneliness is an aversive experience that affects an indi-viduals social, affective, and cognitive functioning. Thephenomenon has been defined in many ways, but mostscholars agree that loneliness is a subjective, unpleasant,and distressing experience resulting from deficiencies in apersons social relationships (Peplau and Perlman 1982).M. Lasgaard (&) M. E. EriksenDepartment of Psychology, Aarhus University,Jens Chr. Skous Vej 4, 8000 Aarhus C, Denmarke-mail: mathiasl@psy.au.dkA. NielsenFirklverskolen, Randers, DenmarkL. GoossensDepartment of Psychology, Catholic University of Leuven,Leuven, Belgium123J Autism Dev Disord (2010) 40:218226DOI 10.1007/s10803-009-0851-zLoneliness is typically measured by means of classic self-report inventories such as the UCLA Loneliness Scale(UCLA; Russell 1996). In these types of instruments, theterms lonely and loneliness are carefully avoided andthe items probe for feelings associated with being lonely(e.g., feeling abandoned).Loneliness is associated with mental health problems,for instance, depressive affect, anxiety, and suicide idea-tion, and recently there has been a growing interest in theclinical significance of loneliness (Cacioppo et al. 2006;Heinrich and Gullone 2006). It is particularly relevant tofocus on loneliness and mental health in adolescence,because the available evidence suggests that lonelinessincreases and is most prevalent during this developmentalperiod (Heinrich and Gullone 2006; Mahon et al. 2006).Furthermore, suffering from a mental health disorder whichis marked by social difficulties in adolescence may beassumed to increase the risk of loneliness. Accordingly, itis relevant to investigate loneliness in adolescence aspossible sequela of disorders such as ASD, AttentionDeficit Hyperactivity Disorder (ADHD), and eating disor-ders. However, studies investigating these associations arerare. One exception is learning disabilities. A considerablenumber of studies have found that children and adolescentswith learning disabilities display a higher degree of lone-liness than average-achieving classmates (Margalit andAl-Yagon 2002). These studies indicate that suffering froma mental disorder in adolescence may increase the risk ofloneliness.Loneliness and Autism Spectrum DisordersIn his classic work on autism, Kanner (1943) described agroup of children who often played alone, had few socialrelationships, and a desire for aloneness. Although thesubjective experience of loneliness is distinct from alone-ness (an objective condition), loneliness in autism has beena matter of speculation in clinical reports since theseobservations were reported by Kanner (Bauminger andKasari 2000). Concerns about loneliness and poor socialsupport, for instance, are often raised when children withautism are referred to an outpatient clinic (Barry et al.2003). Nevertheless, very few studies have investigated thesignificance of loneliness in ASD.Bauminger and Kasari (2001) attribute the lack ofempirical attention with regard to loneliness in ASD to thediagnostic criteria that specify an inability to form satis-factory social relationships. However, the implications ofthe criteria are unclear. We do not fully understand whetherthe lack of friendships in some individuals with ASD is dueto lack of skills or a lack of interest in the social world(Bauminger and Kasari 2000, 2001). However, inabilityand disinterest, which can both be a problem in ASD, canbe examined in empirical research. One may examinewhether children and adolescents with ASD fully under-stand what it means to be lonely, whether they labelthemselves as being lonely, and whether they score higherthan typically developing youngsters on self-report inven-tories of loneliness, such as the UCLA.One study (Bauminger and Kasari 2000) asked theparticipants to give their own definition of loneliness(describe what lonely means) and to provide an exampleof a time when they felt lonely. Similar to typicallydeveloping children and adolescents, nearly all participantswith autism identified social-cognitive dimensions ofloneliness, indicating that loneliness involves unfulfilledrelationships, exclusion, and dissatisfaction with socialrelationships. However, unlike the controls, only one out ofthree youngsters with autism included an emotionaldimension in their definition of loneliness (e.g., being sad,afraid, or depressed). Another study (Bauminger et al.2003) examined the understanding of the emotional aspectof loneliness in high-functioning children and adolescentswith autism, using direct questions (e.g., Can a child feellonely when s/he is in the company of other children?).When answering these questions, children and adolescentswith autism revealed as complex an understanding of themore emotional aspects of loneliness as did typicallydeveloping children and adolescents. Taken together, thefindings indicate that high-functioning children and ado-lescents do understand the concept of loneliness, at least toa certain degree, but the results seem to depend on themethod used. Thus, the understanding of loneliness inchildren and adolescents with ASD may be less compre-hensive and coherent than among typically developingchildren and adolescents.Moreover, using self-report inventories of loneliness,three studies on samples that spanned a large age range (8 to17-year-olds) found that high-functioning children andadolescents with autism reported higher degrees of loneli-ness than typically developing children and adolescents(Bauminger and Kasari 2000; Bauminger et al. 2003, 2004).However, small sample sizes (N = 1622) and broad ageranges limit these studies. Moreover, a recent study withpupils in regular classes in Grades 2 through 5 found thatchildren with ASD did not report greater loneliness than amatched control group (Chamberlain et al. 2007).Whether children and adolescents with ASD apply thelabel lonely to themselves has not been explored as ofyet. The use of direct reports or self-labeling indices couldprovide an estimate of the prevalence of loneliness inyoungsters with ASD, which seems a relevant topic toinvestigate.In sum, some understanding has been gained of theperception and experience of loneliness in youngsters withASD, mainly through the use of interviews and indirectJ Autism Dev Disord (2010) 40:218226 219123reports as provided through self-report inventories. Thefindings and limitations of existing studies, however, callfor further investigation of loneliness, particularly in theperiod of adolescence. Current knowledge about theoccurrence of loneliness in adolescents with ASD is verylimited, as is our knowledge about factors that may protectagainst loneliness, such as social support.Perceived Social SupportA recent meta-analytic study of loneliness (Mahon et al.2006) identified perceived social support as a reliable cor-relate of loneliness during adolescence, suggesting thatwhen significant others are experienced as helpful, loyal,and supportive they may prevent experiences of loneliness.The value of social support seems particularly relevant withregard to adolescents with ASD who are in special need ofhelp from parents, teachers, and peers. Whereas manyresearchers have studied the importance of social support inparents of children with ASD (e.g., Bishop et al. 2007;Luther et al. 2005), very little research has investigated thesignificance of social support in adolescents with ASD.Children and adolescents with ASD usually have fewerfriends than typically developing peers, and the quality oftheir friendships is lower in terms of companionship,security, and help (Bauminger and Kasari 2000). Never-theless, individual variations in perceived social supportfrom both classmates and friends outside the school maymediate feelings of loneliness in ASD. Moreover, parents ofchildren with ASD play an important role in providingopportunities for their children to meet with other children,and in supporting the ongoing friendship processes(Bauminger and Kasari 2001). Also, support and help fromteachers in an autism-friendly environment may decreasethe risk of social difficulties and peer rejection. However, itis still unclear whether perceived support from parents andteachers decreases the risk of loneliness in adolescents withASD.The Present StudyThe purpose of the present study was to contribute to ourunderstanding of loneliness as a possible sequela of ASD inadolescence by: (a) investigating the prevalence of loneli-ness in boys with ASD, (b) comparing direct and indirectreports of loneliness of adolescent boys with ASD andadolescent boys from a national probability study withstudents attending regular schools, and (c) examining thevalue of multiple social support sources in relation toloneliness in boys with ASD.Exploring whether loneliness is common among ado-lescents with ASD may further increase our understandingof the social impairments of this common childhood-onsetdevelopmental disorder. Moreover, establishing the sig-nificance of different sources of social support in pre-venting loneliness may help to guide school interventionsand parental supervision. Accordingly, the study has rele-vance to both clinical practice and theoretical issues, bychallenging our understanding of the characteristics ofadolescents with ASD. Due to the scarcity of previousresearch it was difficult to develop clear expectationsregarding the results of the study. Based on the precedingreview of the literature, however, it was hypothesized that:(a) Adolescents with ASD are significantly lonelier thanadolescents from classes in regular schools on bothdirect and indirect reports.(b) Perceived social support from parents, a teacher,classmates, and a close friend protects against lone-liness in adolescents with ASD.MethodParticipantsThe participants were recruited at two special educationschools in Aarhus County, Denmark. The schools acceptadolescents with ASD or severe ADHD who have diffi-culties meeting the demands of education in regular class-rooms. A total of 74 boys from Grades 79 participated inan investigation about loneliness and friendship (partici-pation rate: 76%). To participate in the study, the studentswere required to be high functioning (i.e., be within orabove the range of normal intellectual functioning and havefluent language [minimum five-word sentences]), althoughthey could have specific scholastic difficulties. In all, 39boys with ASD (pervasive developmental disorders; PDD)met these inclusion criteria and formed the ASD group inthis study.Prior to being referred to one of the schools, the boyshad been thoroughly assessed and diagnosed by experi-enced clinicians, the gold standard for autism diagnosis(Volkmar et al. 2005). The diagnostic evaluations wereconducted at different county hospitals, following the ICD-10 criteria (World Health Organization 1994). The majorityof the participants received their diagnostic evaluation in aspecialized department at a university hospital where theAutism Diagnostic Observation Schedule-Generic (ADOS-G) is used as a standard part of the evaluation. ADOS-G isa semi-structured assessment of communication, socialinteraction, and play in children suspected of having ASDor PDD. The diagnostic procedure includes a broad eval-uation building on the contribution of psychiatrists, psy-chologists, nurses, and teachers. A consensus diagnosis isthe standard.220 J Autism Dev Disord (2010) 40:218226123The participants had the following autism subtypes:Childhood autism: 28%; atypical autism: 3%; Aspergerssyndrome: 21%; other PDD: 13%; subtype unspecified:36% (subtype unspecified includes PDD unspecified[F84.9], and cases diagnosed with PDD, but with no note ofthe specific subtype [F84]). Because some students hadspecific scholastic difficulties, and loneliness has beenassociated with learning disabilities, a crude measure ofscholastic difficulties was included by asking one primaryteacher of each participant to rate the scholastic difficultiesof the student on a scale from 1 (few difficulties) to 3(many difficulties). Loneliness scores were not associatedwith the teachers rating within the sample (Tukeys Bposthoc, ns). Eighteen students with ASD had readingdifficulties, for which reason some or all study questionswere presented verbally. The students answers were notvisible to the researcher. No differences in loneliness werefound between this subgroup to which questions had to bepresented verbally, and the other subgroup that did notneed such assistance (ANOVA, ns).The 39 boys with ASD included in the study were1317 years old. These boys were compared with 199 boysaged 1316 from Grade 8 classes in regular schools, whoparticipated in a Danish national probability study onloneliness. The procedure of the study is described inLasgaard (2007). The demographic characteristics of bothsamples are summarized in Table 1.The reported demographics of the two samples werecompared using independent samples t-test. A significantdifference in variance was found in relation to age,reflecting the fact that 82% of the Grade 8 students fromregular schools were 14 years old, whereas most of theGrades 79 students with ASD were 13, 14 or 15 years old(31, 28, and 33%, respectively). Also, a significant differ-ence in variance and mean was found in living arrange-ments. The finding reflects the fact that more boys withASD than boys from classes in regular schools did not livetogether with one or both parents (10 vs. 1%). This differ-ence was expected and is most likely due to a high degree ofbehavioral problems in some participants with ASD.MeasuresThe degree of loneliness was assessed using a Danish ver-sion of the UCLA (third version; Lasgaard 2007; Russell1996), the most frequently used standardized self-reportscale for measuring loneliness in adolescent populations(Shaver and Brennan 1991). The scale consists of 20 items(11 positive and 9 negative) describing subjective feelingsof loneliness, none of which refer specifically to loneliness(e.g., How often do you feel part of a group of friends?,and How often do you feel that you lack companion-ship?). The items are rated on a 4-point Likert scaleaccording to the rate of frequency, ranging from never (1) toalways (4). Higher scores reflect greater loneliness. Usingdata from the national youth probability study, the Danishversion of the scale showed satisfactory psychometricproperties (Lasgaard 2007). In the present study, the scaledemonstrated high internal consistency for the sample ofboys with ASD (a = .85) and for the sample of boys fromregular schools (a = .91).To provide an estimate of the prevalence of lonelinessthe self-labeling single-item I feel lonely was used tomeasure to what degree the students considered themselveslonely (never, sometimes, often, always). Anal-yses on loneliness are based on the UCLA, except from theestimate of the prevalence of loneliness, which is based onthe self-labeling item.Social support was measured using the Social SupportScale for Children (SSSC; Harter 1985). The scale consistsof four subscales (each containing six items) assessingperceived social support and positive regard from parents, aTable 1 Sample characteristicsUCLA UCLA Loneliness Scale,SSSC Social Support Scale forChildrenVariable ASD (N = 39) Controls (N = 199)SociodemographicAge, mean (SD) 14.2(1.03) 14.1(.43)Grade 79 8Two-parent family/single parent, n (%) 35 (90) 197 (99)Two or more siblings, n (%) 16 (41) 101 (51)PsychologicalUCLA, mean (SD) 43.54 (8.84) 37.65 (10.30)SSSC-parents, mean (SD) 20.06 (2.99) SSSC-classmates, mean (SD) 17.64 (3.84) SSSC-teacher, mean (SD) 18.30 (3.99) SSSC-close friend, mean (SD) 19.16 (3.40) Often/always feeling lonely, n (%) 8 (21) 7 (4)Difficulties in making friends, n (%) 20 (51) 30 (15)J Autism Dev Disord (2010) 40:218226 221123teacher, classmates, and a close friend. By including diversepossible sources of support, we hoped to determine theextent to which the perception of support from differentsignificant others may decrease the risk of loneliness. Eachitem is scored on a scale from 1 to 4 with 1 representing thelowest level of social support. In accordance with themanual, clear instructions on how to answer the questionswere given to the students with ASD. The scale was notincluded in the study with students from regular schools.Harter (1985) reported satisfactory psychometric propertiesof the scale in samples of Grade 68 students. Prior to datacollection, the scale was adapted to Danish using a trans-lation/back-translation procedure and feedback from stu-dents in a pilot study (see below). The adapted scaledemonstrated good internal consistency (parents a = .75;classmates a = .81; teacher a = .83; close friend a = .75).To allow for the possibility that the ability to establishpeer relations outside the special education school also mayprotect against loneliness, we included a single-item mea-sure to estimate how often the participants were in contactwith peers outside school. The amount of contact was ratedon a 6-point scale, ranging from never (1) to daily (6).Finally, the students were asked if they experienced diffi-culties in making friends, rated on a 4-point Likert-scalethat ranged from strongly disagree (1) to strongly agree (4).By including experiences of difficulties in making friends,we aimed to explore one aspect of poor social functioningthat may increase the risk of loneliness in ASD.For all the UCLA and SSSC variables the percentage ofmissing values was small (0.07.7% in the ASD group;2.55.0% in the control group). The Expectation Maximi-zation Algorithm, which has been demonstrated to be aneffective method of dealing with missing data (Buntinget al. 2002), was performed to impute missing data on casesmissing less than 10% of the items on a scale.ProcedureDifficulties associated with ASD (e.g., problems with gen-eralization, conceptual understanding, communication, andexecutive functioning, and a tendency for literal and con-crete understanding) do not harmonize well with therequirements of participating in research and raise the needto be cautious when studying adolescents with ASD(Eriksen 2005). However, a recent study of emotion regu-lation abilities concluded that the possibility of using self-report measures to understand adults with high-functioningASD proved promising (Berthoz and Hill 2005). Moreover,children and adolescents with ASD have been found toprovide reliable and valid self-reports of their social andemotional status (Sutton et al. 2005).As stressed by Eriksen (2005), taking the specificcharacteristics of ASD into consideration in the researchdesign increases the validity of the information gathered.Thus, the design of the study and the format of the ques-tionnaire were developed to overcome some of the specificproblems associated with ASD, particularly with regard toorganization and conceptual understanding. The question-naire was presented as four small tasks and colors helpedthe students to remember and distinguish between theresponse categories. Additionally, a small pilot study wasconducted with four students from Grade 10, which led tominor changes in the instructions and the wording of a fewitems.Prior to data collection informed consent was obtainedfrom the parents, who received a letter that explained thepurpose of the study and the procedures securing confi-dentiality. Participants in the study were given 1 weeksnotice prior to the data collection in order to facilitate theirpreparation with regards to a change in the daily schedule.To increase the familiarity of the new setting, and tomaximize the success of the interaction, a letter describedthe time and purpose of the study, gave examples of thequestions, and introduced the researcher attending the datacollection.At the beginning of the data collection, the students wereintroduced to the use of questionnaires and to the confi-dentiality procedures. Moreover, loneliness was explainedas a concept, mentioning various situations that may lead toloneliness. The comments and questions of the participantsgave the impression that the boys with ASD understood theconcept of loneliness. The first or second author of the studyadministered the survey and supported the students byclarifying questions and encouraging participation. Nodifferences in loneliness were found between the twogroups of students who worked with the differentresearchers. Based on observations during data collection, itwas the researchers impression that the study succeeded inovercoming some of the problems associated with usingself-report scales in ASD research. The fact that the scalesused showed adequate internal consistency, and that all theparticipating students filled out the questionnaire, seems tosupport that impression.ResultsTwenty-one percent of the adolescents with ASD describedthemselves as often or always feeling lonely and another38% reported that they feel lonely sometimes. Four percentof the controls described themselves as often or alwaysfeeling lonely and another 19% reported feeling lonelysometimes. Logistic regression analysis, comparing the twogroups (ASD vs. controls) on the self-labeling single-item,revealed that feeling lonely (often or always) was stronglyassociated with ASD (OR: 7.08 [95% CI: 2.4020.91],222 J Autism Dev Disord (2010) 40:218226123p \ .0005). The same applied to difficulties in makingfriends (agree or strongly agree; OR: 6.15 [95% CI: 2.9212.97], p \ .0001).To examine group differences on the UCLA score,univariate ANOVAs were conducted with group as theindependent variable and loneliness score as the dependentvariable. In comparison to adolescent boys from regularschools, adolescent boys with ASD reported higher feel-ings of loneliness (F(1,229) = 11.1, p \ .005). The self-reported prevalence of loneliness and the UCLA correlatedhighly in either sample (ASD: r = .64, p \ .0001; con-trols: r = .60, p \ .0001). Autism subtype (childhoodautism; Aspergers syndrome; other or unspecified sub-type) was not associated with loneliness (Tukeys B pos-thoc, ns).The correlations between the UCLA and the SSSC in theASD group are shown in Table 2. As expected, lonelinesscorrelated negatively with perceived social support fromclassmates (r = -.52, p \ .005), parents (r = -.43,p \ .01), and a close friend (r = -.40, p \ .05). Perceivedsocial support from a teacher was not significantly asso-ciated with loneliness. Moreover, no association was foundbetween loneliness and the amount of contact with peersoutside school.Boys with ASD who had two or more siblings reportedsignificantly less loneliness than boys with ASD who hadone sibling or were an only child (Tukeys B posthoc,F(2,36) = 8.0, p \ .005). Controlling for the effect ofsiblings on correlations between the UCLA and the SSSC,using partial correlations, the moderate associationbetween loneliness and perceived social support from aclose friend no longer proved significant (r = -.24, ns).Loneliness in boys from classes in regular schools was notassociated with the number of siblings.Loneliness was not associated with the experience ofhaving difficulties in making friends (agree or stronglyagree) in boys with ASD (F(1,36) = 2.4, ns), but thisassociation proved significant in boys from regular schools(F(1,188) = 47.6, p \ .0001). Finally, loneliness scoreswere not associated with age (13, 14, and 15? years old) ordifferent living arrangements in either sample (Tukeys Bposthoc, ns).DiscussionLonelinessIn line with previous studies that included both children andadolescents (Bauminger and Kasari 2000; Bauminger et al.2003, 2004), the results of the present study support thehypothesis that adolescent boys with ASD generally feellonelier than adolescent boys from regular schools. Theearlier finding that children with ASD did not report greaterloneliness (Chamberlain et al. 2007) may reflect the factthat children with ASD do not feel lonelier that typicallydeveloping children, and that the association betweenloneliness and ASD reported in earlier studies solely echoesan increased risk of loneliness in adolescence.Our finding that many adolescent boys with ASD feellonely seems to imply that they do not lack an interest inhuman interaction. As children in the higher-functioninggroup grow older, they may become aware that other peopleare of interest and want to join in, make friends, and enjoyhuman company (Wing 1992). So, in contrast to Kanners(1943) conclusion, many adolescents with ASD do have adesire for social involvement and seem to be aware whenthe desire is not met. It is indeed important to acknowledgeand incorporate such notions into our understanding of ASDand clinical practice.To the best of our knowledge, no previous studies haveaimed to estimate the prevalence of loneliness in adoles-cents with ASD by asking to what degree they considerthemselves lonely. The prevalence of loneliness was foundto be considerable. Twenty-one percent of the adolescentswith ASD described themselves as often or always feelinglonely. Examining self-competence and emotional under-standing, Capps et al. (1997) stated that the pain one feels inresponse to visions of the isolated, autistic child is greatlymagnified when one imagines that the child feels lonely andrejected, rather than detached and unaware. These authorsadded that such responses are not necessarily an accurateindex of the way the children feel themselves. This cautionraised is essential. Children with and without ASD mayunderstand the concept of friendship differently (Cham-berlain et al. 2007). Likewise, our general knowledge ofTable 2 Correlation matrixScale SSSC-parents SSSC-teacher SSSC-classmates SSSC-close friendUCLA -.43** -.19 -.52*** -.40*SSSC-parents .50*** .36* .12SSSC-teacher .36* .07SSSC-classmates .26UCLA UCLA Loneliness Scale, SSSC Social Support Scale for Children* p \ .05, ** p \ .01, *** p \ .005J Autism Dev Disord (2010) 40:218226 223123loneliness may not be an accurate standard for under-standing loneliness in ASD, and the desire for socialinvolvement of adolescents with ASD may be differentfrom any such desire in typically developing adolescents.More than half of the boys with ASD reported havingdifficulties in making friends. Yet, in the present studythese difficulties were not associated with feelings ofloneliness. Therefore, we assume that despite the recogni-tion of their difficulties many adolescents with ASD domanage to develop social relations that they find satisfac-tory. Additionally, it is possible that some do not wish tohave friends. Another explanation may be that some of theparticipants have been taught that ASD is associated withdifficulties in making friends. Therefore, they may simplyreplicate this statement rather than describe their ownabilities.Social SupportOur knowledge about factors that may protect againstloneliness in persons with ASD is very limited. However,the present study indicates that perceived social supportfrom parents, classmates, and a close friend is protectiveagainst loneliness. This finding and the estimated highprevalence of loneliness underline the need for interven-tions that may identify and promote multiple sources ofsocial support and encourage social activities and trainingin the school and family environment. In particular, socialskills training has become widely accepted in the treatmentof adolescents with ASD. Although the empirical supportfor the approach is incomplete, available studies indicatethat it has some potential in limiting the social difficultiesassociated with the disorder (White et al. 2007). Moreover,social skills training may not only strengthen the quality ofsocial interactions but also decrease loneliness and improveperceptions of social support in adolescents with ASD(Barry et al. 2003).Moreover, parents may support the personal and socialdevelopment of their children. Because adolescents withASD often find it difficult to make friends, and often do notknow the rules for social interaction, parents may play therole of facilitator by helping their children in creating andmaintaining a social network and thereby increasing theirchildrens self-esteem. Thus, creating a positive self-image,increasing self-knowledge, and strengthening resourcesmay also help towards compensating the social impair-ments in adolescents with ASD.According to the present study, having two or moresiblings decreases the risk of loneliness in adolescent boyswith ASD and, as reported, the association betweenloneliness and perceived social support from a closefriend disappeared when controlling for the number ofsiblings. Typically developing siblings provide a highlevel of frequency and complexity of social interaction(Knott et al. 1995) and may therefore function as closefriends. In addition, they may also decrease the risk ofloneliness by giving siblings with autism an opportunityto learn about social interaction and supporting theirsocial development (Tsao and Odom 2006). Noteworthy,the positive effect of sibling relations seems to depend onhaving two or m siblings. This may be explained by thefact that a large number of siblings appears to facilitatehealthy psychosocial adjustment in siblings of childrenwith autism (Kaminsky and Dewey 2002). Also, adoles-cents with ASD with two or more siblings may engage insocial interactions in the family without playing an activepart.LimitationsThe present study has several limitations. It is cross-sec-tional and offers no knowledge about the development andstability with regards to feelings of loneliness. The rela-tionship between perceived social support and lonelinessmay also be bidirectional with loneliness affecting theperception of social support. In addition, social supportalways has an objective component, which was not prop-erly assessed by our subjective measure of the construct.Our exclusive reliance on this subjective measure mayhave inflated the negative correlation between the con-structs of loneliness and social support. In future research,therefore, it is essential to include an objective measure ofavailable social support resources as well.Furthermore, impaired emotional processing has beenreported in studies of individuals with ASD (Hill et al.2004). Therefore, it is possible that loneliness was under-reported because some participants were not able to iden-tify and express this feeling, or over-reported becausedifficulties with emotion processing caused a lack ofemotional differentiation. However, the self-labelingloneliness measure and the UCLA correlated highly, indi-cating accordance between the self-description of loneli-ness and a validated measure of loneliness. Nevertheless,the self-reported prevalence of loneliness in the studyshould be considered a tentative estimate of the scale of theproblem.It should further be stressed that we investigated ado-lescents with ASD attending special education schools thataccept students with severe symptomatology and behav-ioral problems, which may have influenced the estimatedprevalence of loneliness. Moreover, boys with ASDattending special education schools may differ from boyswith ASD enrolled in inclusive regular classes, irrespectiveof the severity of symptoms. Finally, our knowledge aboutthe cognitive and adaptive functioning of the participants islimited.224 J Autism Dev Disord (2010) 40:218226123Suggestions for Future ResearchThe heterogeneity of the disorder and the heterogeneityin social interest and functioning of people with ASD areincreasingly recognized. Therefore, there is a profoundneed to understand variations in the expression ofsymptoms, differing levels of social interest and insight,social and cognitive ability, and the implications of thesevariations on loneliness and other social factors.Although social and communicative difficulties arecharacteristic of ASD, not all children and adolescentswith the disorder seem to feel lonely. This raises theneed to understand why some individuals experienceloneliness whereas others do not. This could be exam-ined by investigating factors normally associated withdevelopmental variation in ASD (e.g., intellectual abili-ties, adaptive functioning, and symptom severity). Mostimportantly, some participants in the present study suf-fered from specific scholastic difficulties. Given thatlearning disabilities have been associated with lonelinessin previous studies, it remains possible that the strongassociation between feeling lonely and ASD can beexplained by scholastic difficulties or learning disabili-ties. Future studies need to examine more closely whe-ther the high prevalence of loneliness in ASD isindependent of learning disabilities.Future studies also need to investigate whether the highprevalence of loneliness is unique to ASD, or rather acentral characteristic of developmental disorders, or ado-lescent psychopathology in general. On the one hand,studies of loneliness in ADHD have not found that theimpaired social functioning associated with this disorderincreases the risk of loneliness (Diamantopoulou et al.2005; Heiman 2005; McNamara et al. 2005), which couldindicate that the high prevalence of loneliness reported inthis study may be specifically associated with ASD ratherthan developmental disorders in general.Finally, the high prevalence of loneliness among ado-lescents with ASD is a cause of concern. As mentioned,loneliness and depression are associated in typicallydeveloping adolescents, and it is difficult to see that thisshould not be the case in high-functioning adolescents andadults with ASD who are already susceptible to high ratesof depression and suicide ideation (Ghaziuddin et al. 1998;Shtayermman 2007). As a consequence, it seems likely thatfeelings of loneliness, poor social support, and generalsocial dysfunction in adolescents with ASD increase therisk of depression and suicidal behavior. Furthermore, thevalue of perceived social support from classmates tells usthat experiences of loneliness and isolation are likely toincrease when adolescents with ASD leave the schoolsystem.Acknowledgments We are grateful for the assistance provided bythe staff and students from Langagerskolen, Aarhus and Firklversk-olen, Randers.ReferencesAmerican Psychiatric Association. (2000). Diagnostic and statisticalmanual of mental disorders (DSM-IV-TR) (4th ed.). Washington,DC: American Psychiatric Press.Barry, T. D., Klinger, L. G., Lee, J. M., Palardy, N., Gilmore, T., &Bodin, S. D. (2003). Examining the effectiveness of anoutpatient clinic-based social skills group for high-functioningchildren with autism. Journal of Autism and DevelopmentalDisorders, 33, 685701.Bauminger, N., & Kasari, C. (2000). Loneliness and friendship inhigh-functioning children with autism. Child Development, 71,447456.Bauminger, N., & Kasari, C. (2001). The experience of loneliness andfriendship in autism: Theoretical and practical issues. In E.Schopler, N. Yirmiya, C. Shulman, & L. M. Marcus (Eds.), Theresearch basis for autism intervention (pp. 151168). New York:Kluwer Academic/Plenum.Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interactionand loneliness in high-functioning children with autism. Journalof Autism and Developmental Disorders, 33, 489507.Bauminger, N., Shulman, C., & Agam, G. (2004). The link betweenperceptions of self and of social relationships in high-functioningchildren with autism. Journal of Developmental and PhysicalDisabilities, 16, 193214.Berthoz, S., & Hill, E. L. (2005). The validity of using self-reports toassess emotion regulation abilities in adults with autism spec-trum disorder. European Psychiatry, 20, 291298.Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictorsof perceived negative impact in mothers of children with autismspectrum disorder. American Journal on Mental Retardation,112, 450461.Bunting, B. P., Adamson, G., & Mulhall, P. (2002). A Monte Carloexamination of an MTMM model with planned incomplete datastructures. Structural Equation Modeling, 9, 369389.Cacioppo, J. T., Hughes, M. E., Waite, L. J., Hawkley, L. C., &Thisted, R. A. (2006). Loneliness as a specific risk factor fordepressive symptoms: Cross-sectional and longitudinal analyses.Psychology and Aging, 21, 140151.Capps, L., Sigman, M., & Yirmiya, N. (1997). Self-competence andemotional understanding in high-functioning children withautism. In M. E. Hertzig & E. A. Farber (Eds.), Annual progressin child psychiatry and child development, 1996 (pp. 260279).Hove, UK: Psychology Press.Chamberlain, B., Kasari, C., & Rotheram-Fuller, E. (2007). Involve-ment or isolation? The social networks of children with autism inregular classrooms. Journal of Autism and DevelopmentalDisorders, 37, 230242.Diamantopoulou, S., Henricsson, L., & Rydell, A. (2005). ADHDsymptoms and peer relations of children in a community sample:Examining associated problems, self-perceptions, and genderdifferences. International Journal of Behavioral Development,29, 388398.Eriksen, M. E. (2005). Interview af personer med srlige forudstn-inger. [Interviewing people with special cognitive abilities].Nyhedsbrev. Center for Kvalitativ Metodeudvikling, 38, 4055.Ghaziuddin, M., Weidmer-Mikhail, E., & Ghaziuddin, N. (1998).Comorbidity of Asperger syndrome: A preliminary report.Journal of Intellectual Disability Research, 42, 279283.J Autism Dev Disord (2010) 40:218226 225123Goswick, R. A., & Jones, W. H. (1982). Components of lonelinessduring adolescence. Journal of Youth and Adolescence, 11, 373383.Harter, S. (1985). Manual for the social support scale for children.Denver, CO: University of Denver.Heiman, T. (2005). An examination of peer relationships of childrenwith and without attention deficit hyperactivity disorder. SchoolPsychology International, 26, 330339.Heinrich, L. M., & Gullone, E. (2006). The clinical significance ofloneliness: A literature review. Clinical Psychology Review, 26,695718.Hill, E., Berthoz, S., & Frith, U. (2004). Brief report: Cognitiveprocessing of own emotions in individuals with autistic spectrumdisorder and in their relatives. Journal of Autism and Develop-mental Disorders, 34, 229235.Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment insiblings of children with autism. Journal of Child Psychologyand Psychiatry, 43, 225232.Kanner, L. (1943). Autistic disturbances of affective contact. NervousChild, 2, 217250.Knott, F., Lewis, C., & Williams, T. (1995). Sibling interaction ofchildren with learning disabilities: A comparison of autism andDowns syndrome. Journal of Child Psychology and Psychiatry,36, 965976.Lasgaard, M. (2007). Reliability and validity of the Danish version ofthe UCLA Loneliness Scale. Personality and Individual Differ-ences, 42, 13591366.Luther, E. H., Canham, D. L., & Cureton, V. Y. (2005). Coping andsocial support for parents of children with autism. Journal ofSchool Nursing, 21, 4047.Mahon, N. E., Yarcheski, A., Yarcheski, T. J., Cannella, B. L., &Hanks, M. M. (2006). A meta-analytic study of predictors forloneliness during adolescence. Nursing Research, 55, 308315.Margalit, M., & Al-Yagon, M. (2002). The loneliness experience ofchildren with learning disabilities. In B. Y. L. Wong & M. L.Donahue (Eds.), The social dimensions of learning disabilities(pp. 5375). Mahwah, NJ: Erlbaum.McNamara, J. K., Willoughby, T., & Chalmers, H. (2005). Psycho-social status of adolescents with learning disabilities with andwithout comorbid attention deficit hyperactivity disorder. Learn-ing Disabilities Research and Practice, 20, 234244.Orsmond, G. I., Krauss, M. W., & Seltzer, M. M. (2004). Peerrelationships and social and recreational activities amongadolescents and adults with autism. Journal of Autism andDevelopmental Disorders, 34, 245256.Parkhurst, J. T., & Asher, S. R. (1992). Peer rejection in middle school:Subgroup differences in behavior, loneliness, and interpersonalconcerns. Developmental Psychology, 28, 231241.Pedersen, S., Vitaro, F., Barker, E. D., & Borge, A. I. H. (2007). Thetiming of middle-childhood peer rejection and friendship:Linking early behavior to early-adolescent adjustment. ChildDevelopment, 78, 10371051.Peplau, L. A., & Perlman, D. (1982). Perspectives on loneliness. In L. A.Peplau & D. Perlman (Eds.), Loneliness. A sourcebook of currenttheory, research and therapy (pp. 118). New York: Wiley.Russell, D. W. (1996). UCLA Loneliness Scale (version 3):Reliability, validity, and factor structure. Journal of PersonalityAssessment, 66, 2040.Shaver, P. R., & Brennan, K. A. (1991). Measures of depression andloneliness. In J. P. Robinson, P. R. Shaver, & L. S. Wrightsman(Eds.), Measures of personality and social psychological atti-tudes (pp. 195290). San Diego, CA: Academic Press.Shtayermman, O. (2007). Peer victimization in adolescents and youngadults diagnosed with Aspergers syndrome: A link to depressivesymptomatology, anxiety symptomatology and suicidal ideation.Issues in Comprehensive Pediatric Nursing, 30, 87107.Sutton, S. K., Burnette, C. P., Mundy, P. C., Meyer, J., Vaughan, A.,Sanders, C., et al. (2005). Resting cortical brain activity andsocial behavior in higher functioning children with autism.Journal of Child Psychology and Psychiatry, 46, 211222.Tsao, L., & Odom, S. L. (2006). Sibling-mediated social interactionintervention for young children with autism. Topics in EarlyChildhood Special Education, 26, 106123.Volkmar, F., Chawarska, K., & Klin, A. (2005). Autism in infancyand early childhood. Annual Review of Psychology, 56, 315336.White, S. W., Keonig, K., & Scahill, L. (2007). Social skillsdevelopment in children with autism spectrum disorders: Areview of the intervention research. Journal of Autism andDevelopmental Disorders, 37, 18581868.Wing, L. (1992). Manifestations of social problems in high-function-ing autistic people. New York: Plenum.World Health Organization. (1994). WHO ICD-10: Psykiske lidelserog adfrdsmssige forstyrrelser: Klassifikation og diagnostiskekriterier [WHO ICD-10: Mental disorders and behaviouraldisorders: Classification and diagnostic criteria]. Copenhagen,Denmark: Munksgaard.226 J Autism Dev Disord (2010) 40:218226123Copyright of Journal of Autism & Developmental Disorders is the property of Springer Science & BusinessMedia B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without thecopyright holder's express written permission. However, users may print, download, or email articles forindividual use.