Charman T

McConachie H

Salomone E

Warreyn P

Newcastle University E-Prints

Newcastle University ePrints - eprint.ncl.ac.uk Salomone E, Charman T, McConachie H, Warreyn P. Child's verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe. Child: Care, Health and Development 2016, 42(1), 141-145. Copyright This is the peer reviewed version of the following article: Salomone E, Charman T, McConachie H, Warreyn P. Child's verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe. Child: Care, Health and Development 2016, 42(1), 141-145, which has been published in final form at http://dx.doi.org/10.1111/cch.12261.  This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.  DOI link to article: http://dx.doi.org/10.1111/cch.12261 Date deposited: 20/01/2016 Embargo release date: 28 May 2017  AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 1  Child’s verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe   Erica Salomone, PhD1*, Tony Charman, DClinPsy, PhD2, Helen McConachie, DClinPsy, PhD3, Petra Warreyn, PhD4 1 King’s College London, Institute of Psychiatry, Psychology and Neuroscience, Department of Psychology, United Kingdom  erica.salomone@kcl.ac.uk  Post-doctoral researcher 2 King’s College London, Institute of Psychiatry, Psychology and Neuroscience, Department of Psychology, United Kingdom  tony.charman@kcl.ac.uk Chair in Clinical Child Psychology 3 Institute of Health and Society, Newcastle University, United Kingdom; helen.mcconachie@newcastle.ac.uk Strategic Research Advisor 4 Department of Experimental Clinical and Health Psychology, Ghent University, Belgium; petra.warreyn@ugent.be Post-doctoral researcher  * Correspondence should be addressed to: erica.salomone@kcl.ac.uk; +44 (0)207 848 0405   AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 2    Word count: 1499  Key words Autism; Autism spectrum disorder; Access to Health Care; Early Assessment; Age at diagnosis; Europe.  Key messages  Age at diagnosis for autism spectrum disorder varies considerably across Europe  Children with better language abilities, particularly females, were diagnosed later than non-verbal and minimally verbal children  Awareness initiatives and integrated detection programs should be implemented to lower age at diagnosis  AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 1  Child’s verbal ability and gender are associated with age at diagnosis in a sample of young children with autism spectrum disorder in Europe  Abstract Background. Autism spectrum disorder (ASD) can in some cases be reliably diagnosed by age 2 years, but in community settings the mean age at diagnosis is often considerably higher.   Later diagnosis has been found to be associated with lower symptom severity, lower parental socioeconomic status, and fewer parental concerns. Gender differences in age at diagnosis have been examined, with mixed evidence.  Methods. We examined the association of child's verbal ability and gender, and parental education, with age at diagnosis in a large sample of young children with autism spectrum disorder in 18 European countries (N=1,410).  Results. There was considerable variation in age at diagnosis across countries.  Children with better communication skills were diagnosed significantly later than non-verbal and minimally verbal children.  There was also a significant interaction of gender with verbal ability on age at diagnosis, in that females with complex phrase speech were diagnosed later than males with the same level of verbal ability.  Conclusions. Our findings highlight the need to implement public awareness initiatives and training for professionals to promote early detection, and consequently early intervention, for autism spectrum disorder in Europe.  Key words Age at diagnosis; autism spectrum disorder; Europe.     AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 2  Child’s verbal ability and gender are associated with age at diagnosis in a sample of young children with autism spectrum disorder in Europe  Introduction Autism spectrum disorder (ASD) can in some cases be reliably diagnosed by age 2 years (Steiner et al. 2012), but in community settings the mean age at diagnosis is often considerably higher.  A recent review of 42 studies published from January 1990 through March 2012 found that the mean age at diagnosis ranged from 38 to 120 months (Daniels & Mandell 2013).  In these primarily US-based samples, later diagnosis was associated with lower symptom severity, lower parental socioeconomic status and fewer parental concerns.  Some studies examined the association of age at diagnosis with gender, with mixed evidence.  The importance of early diagnosis is its impact on families’ access to early intervention, advice and support. The aim of this study was to examine the association of child’s reported verbal ability and gender, and parental education with age at diagnosis in a large multi-country sample of European young children with ASD.   Methods We conducted a secondary analysis of data from an online survey on the use of interventions for young children with ASD, developed within the Cooperation in Science and Technology (COST)1 Action ‘Enhancing the Scientific Study of Early Autism (ESSEA)’                                                           1 The European project Cooperation in Science and Technology (COST) is an intergovernmental framework that supports the coordination of nationally funded research on a European level. AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 3  network. The ESSEA network, composed of over 80 scientists from 23 European countries, was established to promote capacity in ASD research and implementation science (Bölte et al. 2013; García-Primo et al. 2014; McConachie et al. 2015).  The survey, which asked about current use of conventional intervention (such as speech and language therapy, applied behavioural analysis; see Salomone et. al. 2015a, in press), as well as use of medication and complementary and alternative medicine (see Salomone et. al. 2015b, in press), was distributed via parent support associations through the ESSEA network in 20 European countries and was open for 45 days. Two initial questions were designed to filter out participants who did not meet the inclusion criteria: to be a parent/caregiver of a child a) with ASD; and b) aged 7 or younger.  Two countries (Austria and Sweden) were excluded from the study as the number of participants recruited within the planned timeframe was too low (Austria: n = 1; Sweden: n = 5).  The final dataset included data from the following countries: Belgium, Czech Republic, Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, the Netherlands, Norway, Poland, Portugal, Romania, Spain, the former Yugoslav Republic of Macedonia and the United Kingdom.   Ethical approval was given by the Research Ethics Committee of the Faculty of Children and Learning, Institute of Education, London, UK (IOE/ FPS 385).    Informed consent was obtained. To reduce the potential for confounding of chronological age on the relationship between verbal ability and age at diagnosis, a restriction strategy was implemented to ensure that all participants were at an age when complex phrase speech may potentially be present. Therefore only data from children aged >4 years were included (N=1,410; 81.8% male).   Information on child’s verbal ability and parental educational level was available for 1,245 respondents. Of these, 16% of the children were non-verbal, 27% used single words or simple phrases and 57% used complex phrases.  Parents’ education was reported as degree or postgraduate qualification in 63% of the sample. AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 4   Results The mean age at diagnosis was 42.16 months (SD=13.42); one-sample t tests were used to compare the mean age at diagnosis in each country with the mean of all of the remaining countries (N=1,410; Table 1).   ---- Table 1 about here ---- A three-way independent ANOVA was conducted to examine the effect of child’s verbal ability (non-verbal; minimally verbal; complex phrases), gender, and parental education (high school diploma and below; degree/post graduate) and their interactions on age at diagnosis (N=1,245).  There was a significant main effect of level of verbal ability on age at diagnosis, F (2, 1245) = 56.871, p<.001; the effect size was small (partial η2 =.08).  The Bonferroni post hoc test revealed that the age at diagnosis was significantly higher for children who used complex sentences (M=47.13, SD=.65) than both non-verbal children (M=35.37, SD=1.18) and minimally verbal children (M=37.93, SD=.88), both ps <.001.  The age at diagnosis of non-verbal children and minimally verbal children were not significantly different from each other.  The main effect of gender on age at diagnosis was not significant, F (1, 1245) = .286, p=.593.  However, there was a significant interaction between verbal ability and gender on age at diagnosis, F (2, 1245) = 3.519, p=.030; the effect size was small (partial η2 =.01).  In children with complex phrase speech, age at diagnosis was higher for females (M=48.57, SD=1.18) than males (M=45.69, SD=.55), F (1, 1245) = 4.869, p=.028.  The effect of gender was not significant for non-verbal (F (1, 1245) = 2.294, p=.130) or minimally verbal children (F (1, 1245) = .344, p=.558).  The main effect of parental educational level was not significant, F (1, 1245) = .199, p=.656; nor were the interactions AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 5  between parental educational level and verbal ability (F (1, 1245) = .965, p=.381) or gender (F (1, 1245) = .154, p=.695).  ---- Figure 1 about here ---- Fig. 1 Interaction of gender and verbal ability on age at diagnosis (N=1,245)  Discussion We report the first data on factors associated with age at diagnosis in a large multi-country European study.   Age at diagnosis varied considerably across countries in this sample.  Children in Portugal, Spain, Italy, Poland and Romania were diagnosed at a significantly lower age than in the rest of the countries, whereas in the Netherlands, Germany, Hungary, Denmark and Belgium the age at of diagnosis was significantly higher.  This seems to reflect concerns about the difficulty of obtaining a timely ASD diagnosis, even in medically well-served areas of Europe (such as in Germany; Noterdaeme & Hutzelmeyer-Nickels 2010).  However, differences across countries need to be interpreted with caution, as the recruitment method employed in this study (online survey advertised through parents associations) might have been prone to selection bias and differences in the outreach of each national organisation might have influenced sampling.  Consistent with previous findings of higher age at diagnosis for less impaired children or children with an Asperger syndrome or a PDD-NOS diagnosis (Mazurek et al  2014; Mandell et al. 2010; Wiggins et al. 2006), we found that children with better verbal abilities tended to be diagnosed later.  We also found a significant interaction of gender with verbal ability on age at diagnosis, in that females with complex phrase speech were diagnosed later than males with the same level of verbal ability.  This finding is consistent with previous reports of delays in the diagnostic process for females (Russell, et al. 2011; Wiggins et al. AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 6  2006), and particularly for girls with better language abilities (Giarelli et al. 2010).  In our sample age at diagnosis did not vary by parental educational level.  Out of the 11 studies reviewed by Daniels & Mandell (2013) examining the association between measures of socioeconomic status (SES) and age at diagnosis, 6 found no association (of these, 4 studies used samples from the United States, one from England, one from Germany).  The reasons underlying these mixed findings are unclear and are likely to reflect systemic differences in the provision of primary diagnostic services across countries.   These findings should be interpreted in the context of a number of limitations.  Due to the recruitment method, our sample cannot be considered representative of the general population of children with ASD.  As per inclusion criteria for the survey, all children had already received an ASD diagnosis and were aged <7 years, hence the reported age at diagnosis is likely to be lower than for the total population of individuals with ASD, some of whom will be identified at a later age.  Furthermore, the extent of the disadvantage for children with better communication abilities in receiving a timely diagnosis, particularly if they are female, is also likely to be underestimated.  Public awareness initiatives as well as training for professionals should be put in place to promote early detection of ASD and access to intervention across Europe (Oosterling et al. 2010).    Conflict of interest On behalf of all authors, the corresponding author states that there is no conflict of interest.  Acknowledgements xxxx  AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 7   References Bölte, S., Marschik, P., Falck-Ytter, T., Charman, T., Roeyers, H., Elsabbagh, M. (2013) Infants at risk for autism: a European perspective on current status, challenges and opportunities. European Child & Adolescent Psychiatry 22, 341–348. DOI: 10.1007/s00787-012-0368-4. Daniels, A.M & Mandell, D.S. (2013) Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism. doi:10.1177/1362361313480277 García-Primo, P., Hellendoorn, A., Charman, T., Roeyers, H., Dereu, M., Roge, B., Baduel, S., Muratori, F., Narzisi, A., Van Daalen, E., Moilanen, I., Posada de la Paz, M., Canal-Bedia, R. (2014) Screening for autism spectrum disorders: state of the art in Europe. European Child & Adolescent Psychiatry 23 (11), 1005–1021. DOI: 10.1007/s00787-014-0555-6. Giarelli, E., Wiggins, L.D., Rice, C.E., Levy, S.E., Kirby, R.S., Pinto-Martin, J., Mandell, D. (2010) Sex differences in the evaluation and diagnosis of autism spectrum disorders among children. Disability and Health Journal, 3, 107-116. doi:10.1016/j.dhjo.2009.07.001 Mandell, D.S., Morales, K.H., Xie, M., Lawer, L.J., Stahmer, A.C., Marcus, S.C. (2010) Age of Diagnosis Among Medicaid-Enrolled Children With Autism, 2001–2004. Psychiatric Services, 61, 822-829. doi:doi:10.1176/ps.2010.61.8.822 Mazurek, M.O., Handen, B.L., Wodka, E.L., Nowinski, L., Butter, E., Engelhardt, C.R. (2014) Age at First Autism Spectrum Disorder Diagnosis: The Role of Birth Cohort, Demographic Factors, and Clinical Features. Journal of Developmental & Behavioral Pediatrics, 35, 561-569 510.1097/DBP.0000000000000097 AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 8  McConachie, H., Fletcher-Watson, S. and Working Group 4; COST Action ‘Enhancing the Scientific Study of Early Autism’ (2015) Building capacity for rigorous controlled trials in autism: the importance of measuring treatment adherence. Child: Care, Health and Development, 41, 169-177. Noterdaeme, M., Hutzelmeyer-Nickels, A. (2010) Early symptoms and recognition of pervasive developmental disorders in Germany. Autism. doi:10.1177/1362361310371951 Oosterling, I.J., Wensing, M., Swinkels, S.H., Van Der Gaag, R.J., Visser, J.C., Woudenberg, T., Minderaa, R., Steenhuis, M-P., Buitelaar J.K. (2010) Advancing early detection of autism spectrum disorder by applying an integrated two-stage screening approach. Journal of Child Psychology and Psychiatry, 51, 250-258. doi:10.1111/j.1469-7610.2009.02150.x Russell, G., Steer, C., Golding, J. (2011) Social and demographic factors that influence the diagnosis of autistic spectrum disorders. Social psychiatry and psychiatric epidemiology, 46, 1283-1293. doi:10.1007/s00127-010-0294-z Salomone, E., Beranová, Š., Bonnet-Brilhault, F., Briciet Lauritsen, M., Budisteanu, M., Buitelaar, J.K., Canal-Bedia, R., Felhosi, G., Fletcher-Watson, S., Fuentes, J., Gallagher, L., Garcia Primo, P., Gliga, F., Gomot, M., Green, J., Heimann, M., Loa Jónsdóttir, S., Kaale, A., Kawa, R., Kylliainen, A., Lemcke, S., Markovska-Simoska, S., Marschik, P., McConachie, H., Moilanen, I., Muratori, F., Narzisi, A., Noterdaeme, M., Oliveira, G., Oosterling, I., Pijl M., Pop-Jordanova, N., Poustka, F., Roeyers, H., Rogé B., Sinzig, J., Vicente, A., Warreyn, P., Charman, T. Use of early intervention for young children with autism spectrum disorder across Europe (2015a) Autism: The International Journal of Autism and Practice, in press. Salomone, E., Charman, T., McConachie, H., Warreyn, P. & Working Group 4, COST Action ‘Enhancing the Scientific Study of Early Autism’ (2015b) Prevalence and AGE AT DIAGNOSIS IN CHILDREN WITH AUTISM SPECTRUM DISORDER 9  Correlates of Use of Complementary and Alternative Medicine in Children with Autism Spectrum Disorder in Europe, European Journal of Pediatrics, in press. Steiner A, Goldsmith T, Snow A, Chawarska K (2012) Practitioner’s Guide to Assessment of Autism Spectrum Disorders in Infants and Toddlers. Journal of Autism and Developmental Disorders, 42, 1183-1196. doi:10.1007/s10803-011-1376-9 Wiggins L.D., Baio J., Rice C. (2006) Examination of the Time Between First Evaluation and First Autism Spectrum Diagnosis in a Population-based Sample. Journal of Developmental & Behavioral Pediatrics, 27, S79-S87          Figure 1 Interaction of gender and verbal ability on age at diagnosis (N=1,245)    1823283338434853non-verbal minimally verbal complex phrasesMean age at diagnosis  [in months]Verbal abilityMaleFemalep= .028p= .130 p= .558 Table 1 Age at diagnosis by country: comparisons of mean age in each country with mean age in all of the remaining countries     N   M (SD)   t (df) p effect size* Portugal 113  33.53 (11.66) -8.550 (112) <.001 0.63 Italy 88  35.73 (13.02) -4.944 (87) <.001 0.47 Spain 186  36.66 (13.54) -6.375 (185) <.001 0.42 Romania 44  37.55 (11.23) -2.813 (43) .007 0.39 Poland 60  37.85 (11.7) -2.980 (59) .004 0.36 Macedonia 22  39.59 (10.53) -1.162 (21) .258  Czech Republic 81  42.21 (10.26) .044 (80) .965  Norway 24  42.5 (14.37) .119 (23) .906  Iceland 46  42.59 (10.9) .278 (45) .782  France 154  42.76 (12.75) .662 (153) .509  United Kingdom 92  43.28 (12.42) .929 (91) .355  Finland 41  44 (11.55) 1.053 (40) .299  Belgium 96  45.71 (13.33) 2.800 (95) .006 0.28 Ireland 22  46.59 (13.45) 1.570 (21) .131  Hungary 106  47.88 (12.37) 5.150 (105) <.001 0.45 Germany 79  48.44 (10.98) 5.387 (78) <.001 0.52 Netherlands 90  50.02 (12.22) 6.524 (89) <.001 0.57 Denmark 66   50.17 (14.4) 4.741 (65) <.001 0.51 Total 1,410   42.16 (13.42)       *Rosenthal’s r       Acknowledgements We are grateful to all the parents who participated in the study and to the parent associations that were involved in recruiting the participants. This research was supported by the COST Action BM1004 funded by the European Science Foundation and the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115300, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007 - 2013) and EFPIA companies' in kind contribution. It was made possible by the clinicians and researchers who are members of the COST ESSEA (http://www.cost-essea.com/) networks.  

Child\u27s verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe.

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