Please use this identifier to cite or link to this item: https://hdl.handle.net/11499/54851
Full metadata record
DC FieldValueLanguage
dc.contributor.authorKutuk, M.O.-
dc.contributor.authorTufan, A.E.-
dc.contributor.authorKilicaslan, F.-
dc.contributor.authorVural, P.-
dc.contributor.authorGokcen, C.-
dc.contributor.authorAlsen, Guney, S.-
dc.contributor.authorKutuk, B.-
dc.contributor.authorOzyurt, Gonca-
dc.contributor.authorInal, Neslihan-
dc.contributor.authorInal, Neslihan-
dc.contributor.authorMutluer, Tuba-
dc.contributor.authorAcikalin, Eren Yavuz-
dc.contributor.authorOzer, Fadime Hande-
dc.contributor.authorPamuk, Esma Nur-
dc.contributor.authorYesilmese, Seyma Celikcan-
dc.contributor.authorKaradag, Mehmet-
dc.contributor.authorHangul, Zehra-
dc.contributor.authorBilginer, Cilem-
dc.contributor.authorSahin, Nilfer-
dc.contributor.authorBilac, Oznur-
dc.contributor.authorKandemir, Hasan-
dc.contributor.authorErcan, Eyup Sabri-
dc.contributor.authorEseroglu Soylemez, Tugba-
dc.contributor.authorAcikel, Sadettin Burak-
dc.contributor.authorGuler Aksu, Gulen-
dc.contributor.authorDag, Pelin-
dc.contributor.authorToros, Fevziye-
dc.contributor.authorMutlu, Caner-
dc.contributor.authorKardas, Omer-
dc.contributor.authorKardas, Burcu-
dc.contributor.authorKizildag, Suleyman-
dc.contributor.authorDemirci, Esra-
dc.contributor.authorOzmen, Sevgi-
dc.contributor.authorSevicin, Leyla-
dc.contributor.authorKaragoz, Yuksel Sumeyra-
dc.contributor.authorIsik, Umit-
dc.contributor.authorAktepe, Evrim-
dc.contributor.authorAltun, Hatice-
dc.contributor.authorYektas, Çigdem-
dc.contributor.authorPolat Tuysuz, Berna-
dc.contributor.authorBuber, Ahmet-
dc.contributor.authorCansiz, Mehmet Akif-
dc.contributor.authorOgutlu, Hakan-
dc.contributor.authorEray, Safak-
dc.contributor.authorTaner, Hande Ayraler-
dc.contributor.authorAltintas, Ebru-
dc.contributor.authorKutuk, Ozgur-
dc.date.accessioned2023-11-18T09:30:11Z-
dc.date.available2023-11-18T09:30:11Z-
dc.date.issued2023-
dc.identifier.issn2405-8440-
dc.identifier.urihttps://doi.org/10.1016/j.heliyon.2023.e20766-
dc.identifier.urihttps://hdl.handle.net/11499/54851-
dc.description.abstractThe aim of this study is to determine the functioning of adults with autism spectrum disorders (ASDs) diagnosed in childhood and depression and burnout levels among their parents. A total of 261 adults with ASDs and their parents were recruited for the study. Both parents completed the Beck Depression and Maslach Burnout Inventories and reported the functioning of their adult offspring with ASDs. Only 5.4 % of our sample reported “good” or “very good” outcomes. The most common psychiatric comorbidities were intellectual disabilities and attention-deficit/hyperactivity disorder. Maternal burnout and depression scores were significantly elevated compared to those of fathers. There is an undeniable urgent need for more research to identify the needs of adults and families suffering from ASD. Modifications for those with ASD may have to be made for support in workplaces, achieving driving licenses, using public transportation and attendance at tertiary education. © 2023 The Authorsen_US
dc.description.sponsorshipAstrophysics Science Division, ASD: 10–14, 10–14,48,49, 12,13, 14,22,23,29, 38,39, 44,50,51en_US
dc.description.sponsorshipThe aim of this study is to determine the functioning of adults with autism spectrum disorders (ASDs) diagnosed in childhood and depression and burnout levels among their parents. A total of 261 adults with ASDs and their parents were recruited for the study. Both parents completed the Beck Depression and Maslach Burnout Inventories and reported the functioning of their adult offspring with ASDs. Only 5.4 % of our sample reported “good” or “very good” outcomes. The most common psychiatric comorbidities were intellectual disabilities and attention-deficit/hyperactivity disorder. Maternal burnout and depression scores were significantly elevated compared to those of fathers. There is an undeniable urgent need for more research to identify the needs of adults and families suffering from ASD. Modifications for those with ASD may have to be made for support in workplaces, achieving driving licenses, using public transportation and attendance at tertiary education.Parenting a child with ASD involves considerable stress, which may lead to parental burnout involving chronic mental and physical exhaustion [11]. Elevated levels of stress and burnout among parents may adversely affect couples’ relationships, parenting practices, behavior problems in offspring with ASD and the mental health of all family members [11]. Supporting this position, recent meta-analyses reported that anxiety and depression were common among parents of children with ASD, with median rates of 33.0 % and 31.0 %, respectively [12,13]. Depressive symptoms may be especially elevated among mothers [13]. Studies conducted in Turkey supported that parents of children with ASD had elevated levels of burnout and depression, while no study has been conducted to date on depression and burnout levels among parents of Turkish adults with ASD [14].Logistic regression was used to evaluate predictors of “good” or “very good outcome” in the sample, and variables found to be significantly associated in bivariate analyses were entered as predictors. Due to the significant association between diagnosis of ID in childhood and adulthood (χ 2 = 6.5, p = 0.011, McNemar test), we used ID in childhood as the sole predictor to prevent multicollinearity (Table 6). ID in childhood by itself increased the risk of lower functioning in adulthood (p = 0.06, O.R. = 7.5, 95 % CI for O.R. = 1.0–57.9), while receiving vocational support in adulthood reduced it (p = 0.08, O.R. = 0.4, 95 % CI for O.R. = 0.1–1.1), although at trend levels for both. Intact family and maternal higher education had no significant effect on outcome. Having a mother working out of home was the sole significant predictor of reduced risk of lower functioning in adulthood. Although it was statistically significant and fit the data (Hosmer‒Lemeshow χ 2 [6] = 1.7, p = 0.95), as a whole, the model did not improve the classification of “good”/“very good” functioning in adulthood (94.6 % classification at baseline and at the end of the analysis, Table 6).This multicenter, cross-sectional study aimed to evaluate functional outcomes among Turkish early adults with ASD and depressive symptoms and burnout levels of their parents. Most of the early adults with ASD had “poor”/“very poor” outcomes according to the Rutter-Howlin criteria, while only 5.4 % had “good”/“very good” outcomes. Bivariate analyses revealed that lifetime/current ID comorbidity was negatively associated, while receiving vocational support, living in an intact family with both parents, having a mother with a higher level of education and maternal participation in work out of home were positively associated with “good”/“very good” functional outcomes among those with ASD, albeit with some remaining at trend levels. In logistic regression analyses, maternal participation in work out of home was the sole significant predictor of reduced risk of poor functioning in adulthood, with comorbidity of ID in childhood remaining at the trend level. More than one-fifth of mothers and one-tenth of fathers reported clinically significant depressive symptoms. Maternal and paternal depressive symptoms were significantly associated with each other. Incontinence, mutism, and the necessity of close supervision of offspring with ASD were significantly associated with maternal depressive symptoms, while paternal symptoms were associated with lack of educational attainment in offspring and a history of hospitalization among the children. Mothers were significantly more depressed and reported greater emotional exhaustion than fathers. Current and lifetime ID and other neurodevelopmental/psychiatric disorder comorbidities affected maternal depression and burnout levels, while only current comorbidities affected paternal burnout.Previous studies suggest that IQ measured either in childhood or adulthood may predict adult functioning among patients with ASD and that verbal IQ may be especially important in this regard. Age at diagnosis, early language skills, severity of ASD symptoms at baseline and attendance at mainstream education settings emerged as other predictors of adult functioning [ 15–19]. Our results partially support those findings, and in bivariate analyses, lifetime/current ID comorbidity was negatively associated, while receiving vocational support, living in an intact family with both parents, having a mother with a higher level of education and maternal participation in work out of home were positively associated with “good”/“very good” functional outcomes among those with ASD. However, in logistic regression analyses, maternal participation in work out of home was the sole significant predictor of reduced risk of poor functioning in adulthood, with comorbidity of ID in childhood remaining at the trend level.Studies suggest that financial problems are among the main reasons for stress among parents of children with ASD, while the diagnosis of ASD also increases the risk of unemployment among parents [38,39]. Having working parents may reduce the financial burden on families of children with ASD and enable them to access health/educational services [40,41]. Supporting this view, Kilincaslan and colleagues found that elevated speech skills and higher monthly household income were associated with increased daily living skills among their sample with ASD [41]. In previous studies from Turkey, higher maternal education levels were also found to be related to increased participation in the workforce [42]. Maternal participation in work may also be associated with a greater perception of self-efficacy, more sensitive parenting, lower levels of depression and greater knowledge of typical and atypical child development [43,44]. This may also affect mothers’ interactions with their children [45]. On the other hand, separation/divorce may compound the financial problems of parents looking after children with ASD and may limit access to services and treatments [46]. Alternatively, maternal participation in work may also increase conflicts due to demands from work and familial obligations [47]. Because of complex, bidirectional relationships between family status, maternal participation in work, family status, socioeconomic level and other related constructs and the cross-sectional nature of our study, we could not discern the direction of causality on adult functioning of offspring with ASD. Future studies may use longitudinal designs to dissect the relationships between those constructs and establish causality.Studies conducted to date support the importance of IQ, measured in childhood and/or in adulthood, in adult functioning of those with ASD [ 15–19]. Earlier studies suggest that an overall IQ of 50, or alternatively a performance IQ of 70 and a verbal IQ of 50, may differentiate those with “fair” or better outcomes in adulthood from “poor”/“very poor” outcomes [15]. Although IQ scores correlate positively and significantly with adult outcomes, high IQ by itself does not guarantee a better prognosis. Additionally, although IQ levels remain stable at the group level, they may vary with time among individuals. Pickles and colleagues [16] suggest that IQ may be protective only for the poorest outcomes without a guarantee of a good outcome. Recent studies suggest that verbal IQ may be more important in this regard and that other factors, such as social support or severity of autism symptoms, may moderate its effects on functioning [ 15–19]. Supporting those results, we found that lifetime/current ID comorbidity was negatively associated with “good”/“very good” outcomes and that ID in childhood predicted worse functioning in adulthood at a trend level. Despite the importance of discerning functional outcomes among adults with ASD who were diagnosed in childhood, there are no studies conducted on samples from Turkey, and our results should be replicated with further studies. Due to dependence on clinical records, we could not evaluate the effects of verbal IQ level and symptom severity at baseline on adult functioning of cases with ASD. We also did not evaluate adult participants with ASD with formal intelligence tests and reliable and valid measures of psychopathology and social functioning, which may be used in further studies.Caring for a child with ASD from the time of diagnosis onward is a demanding process requiring a balance of parenting roles. Parents also act as cotherapists for their children while educating relatives, schools, and teachers on the nature of ASD, advocate for their children's rights and, with the transition to adulthood, must address problems such as guardianship, higher education, social/romantic relationships of their children, financial security, independent living, and housing [7]. Those obligations lead them to experience elevated levels of stress and burnout. Mothers of children with ASD are the primary caregivers experiencing elevated stress, which may contribute to the development of maternal psychopathology [14,22,23,29]. Accordingly, past studies reported that mothers of children with ASD experience elevated burden and depression in comparison to fathers, and there may exist bidirectional spillover effects between parent dyads [ 10–14,48,49]. Parents with lower education, those living with male/older children with ASD without functional speech, and the presence of behavioral problems/psychiatric comorbidity/physical disorders in offspring with ASD were found to have elevated stress, depressive symptoms, and burnout in previous studies [ 9–14,38,41]. Supporting those views, self-reported depression and burnout levels in our study were also significantly elevated in mothers compared to fathers. Maternal and paternal depressive symptoms were significantly associated with each other. Lack of self-grooming skills and speech of offspring with ASD were significantly associated with maternal depressive symptoms, while paternal symptoms were associated with lack of educational attainment in offspring and a history of hospitalization among the children. Current and lifetime ID and other neurodevelopmental/psychiatric disorder comorbidities affected maternal depression and burnout levels, while only current comorbidities affected paternal burnout. The discrepancy between mothers and fathers may be due to differing responses to the diagnosis of autism in their children [ 47–50]. Previous studies on Turkish parents of children with ASD reported that fathers tended to withdraw from the family, interact with their child less and focus more on the financial aspects of caring for their children and family, while mothers take over the role of caring for the child as well as other family members. Turkish mothers and fathers may also differ in expectations of academic achievement from their children [44,50,51]. Our results should be deemed preliminary, and correlates and predictors of depression, parenting stress and burnout among fathers and mothers of children diagnosed with ASD should be evaluated with further studies using longitudinal designs and evaluating those constructs across multiple time points.Recent studies suggest that approximately one-fifth to more than one-third of parents with children who were diagnosed with ASD may report clinically significant depressive symptoms [ 10–14]. Our results support and extend the results of previous studies and may suggest that parenting stress, burnout and depression may continue over the long term for parents of Turkish children with ASD. Further studies on Turkish samples with ASD and their parents as they age may be required to evaluate the temporal change rates of clinically significant depressive symptoms among parents.Tertiary education and finding employment may be especially challenging for those with ASD [7, 15–19]. Our results are consistent with those studies and may underline the importance of lifelong educational and vocational support for adults with ASD. Further studies should evaluate predictors of gainful employment among this sample. Counseling services, vocational training and support and coordination of services across schools, families, and potential employers for young adults and adults with ASD should be established as soon as possible in developing countries, including Turkey [7, 20–25]. An additional indicator of successful functioning in adulthood is independent living, which includes separation from the family of origin and becoming socially active in the community. However, studies show that most adults with ASD continue to live with their parents and never leave home [ 15–19]. Consistent with previous studies, most of our sample lived with their families. Transportation is another major problem for adults with ASD. Mobility provides a certain level of independence for young people to travel, access to health care, and attend group activities, although special modifications may have to be made to overcome sensory difficulties [ 52–54]. Underlining the importance of independent mobility and barriers to achieving it, approximately one percent of our sample could obtain their driver's license, and less than one-tenth could travel between cities by using buses/planes. Driving instructors and courses may be informed of neurodevelopmental disorders, including ASD, and appropriate modifications to the licensing process may be required to address the needs of Turkish adults with ASD. Staff working at intercity bus/train/airplane services may also be educated on the needs of adults with ASD as well as the importance of sensory problems in adapting to travel. Social relations, including friendships, protect mental health among people, including adults with ASD. However, adults with autism experience significant difficulties in establishing and maintaining friendships and romantic relationships due to their symptoms [ 15–19]. Our results are in accordance with those previous reports, and we found that parents of just over one-tenth of our sample reported that their children had friends, and less than five percent experienced romantic relationships. Considering the result that less than one tenth of our sample had ever worked for pay, vocational support for Turkish adults with ASD may have to be introduced.The transition to adulthood is very difficult for individuals with ASD and their families. Similar to the status of education services in other countries, many services that were offered as children are limited or no longer available for adults with ASD in Turkey, and there are no structured supports easing the transition to adult services [7]. Even in countries with structured support to ease the transition to adult services, young adults with ASD may be socially isolated and lack participation in the community [7]. Lack of education among health care workers for ASD in adulthood may present barriers to receiving help. This may lead to embitterment among parents and adults with ASD [7]. Our results support the urgent need for a structured transition plan for families of adults with ASD as well as those adults for adult mental health services such as those in other countries (e.g., STEPS, [57]). Modifications for those with ASD may have to be made for support in workplaces, achieving driving licenses, using public transportation and attendance at tertiary education. Our study may be a tentative first step in this direction, and the results of our study group should be replicated with a nationwide survey.All the authors gratefully acknowledge Burcu Gonul who is the Clinical Nurse Specialist (CNS) of the Department of Child and Adolescent Psychiatry at Dr. Turgut Noyan Medical and Research Center for her support for the overall coordination of the whole study. We thank all patients and their families that participated in the study.en_US
dc.language.isoenen_US
dc.publisherElsevier Ltden_US
dc.relation.ispartofHeliyonen_US
dc.rightsinfo:eu-repo/semantics/openAccessen_US
dc.subjectAdulthooden_US
dc.subjectASDen_US
dc.subjectAutismen_US
dc.subjectBurnouten_US
dc.subjectParentsen_US
dc.titlefunctional outcome in late adolescence/early adulthood of patients with autism spectrum disorder and its relationships with parental burnout and depression: A preliminary multi-center, cross-sectional studyen_US
dc.typeArticleen_US
dc.identifier.volume9en_US
dc.identifier.issue10en_US
dc.departmentPamukkale Universityen_US
dc.identifier.doi10.1016/j.heliyon.2023.e20766-
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanıen_US
dc.authorscopusid36246352500-
dc.authorscopusid14627787400-
dc.authorscopusid56779866800-
dc.authorscopusid24437388700-
dc.authorscopusid36186815300-
dc.authorscopusid57194021762-
dc.authorscopusid57575507800-
dc.identifier.scopus2-s2.0-85174855533en_US
dc.identifier.wosWOS:001114797900001en_US
dc.institutionauthor…-
item.openairecristypehttp://purl.org/coar/resource_type/c_18cf-
item.openairetypeArticle-
item.cerifentitytypePublications-
item.fulltextWith Fulltext-
item.grantfulltextopen-
item.languageiso639-1en-
crisitem.author.dept35.01. Foreign Languages-
crisitem.author.dept14.02. Internal Medicine-
Appears in Collections:Scopus İndeksli Yayınlar Koleksiyonu / Scopus Indexed Publications Collection
Tıp Fakültesi Koleksiyonu
WoS İndeksli Yayınlar Koleksiyonu / WoS Indexed Publications Collection
Files in This Item:
File SizeFormat 
1-s2.0-S2405844023079744-main.pdf597.16 kBAdobe PDFView/Open
Show simple item record



CORE Recommender

SCOPUSTM   
Citations

1
checked on Nov 16, 2024

WEB OF SCIENCETM
Citations

1
checked on Nov 21, 2024

Page view(s)

54
checked on Aug 24, 2024

Download(s)

20
checked on Aug 24, 2024

Google ScholarTM

Check




Altmetric


Items in GCRIS Repository are protected by copyright, with all rights reserved, unless otherwise indicated.