Early services for ASD need to canvas the opinions of both parents and professionals. These opinions are seldom compared in the same research study. This study aims to ascertain the views of families and professionals on early detection, diagnosis and intervention services for young children with ASD. An online survey compiled and analysed data from 2032 respondents across 14 European countries (60.9% were parents; 39.1% professionals). Using an ordinal scale from 1 to 7, parents’ opinions were more negative (mean = 4.6; SD 2.2) compared to those of professionals (mean = 4.9; SD 1.5) when reporting satisfaction with services. The results suggest services should take into account child’s age, delays in accessing services, and active stakeholders’ participation when looking to improve services.
This is a preview of subscription content, log in to check access.
Buy single article
Instant access to the full article PDF.
Price includes VAT for USA
Subscribe to journal
Immediate online access to all issues from 2019. Subscription will auto renew annually.
This is the net price. Taxes to be calculated in checkout.
A copy of the surveys can be seen at: http://asdeu.eu/wp2-activities/.
Adelman, C. R., & Kubiszyn, T. (2017). Factors that affect age of identification of children with an autism spectrum disorder. Journal of Early Intervention, 39(1), 18–32. https://doi.org/10.1177/1053815116675461.
Allison, C., Baron-Cohen, S., Wheelwright, S., Charman, T., Richler, J., Pasco, G., et al. (2008). The Q-CHAT (Quantitative CHecklist for Autism in Toddlers): A normally distributed quantitative measure of autistic traits at 18–24 months of age: preliminary report. Journal of Autism and Developmental Disorders, 38(8), 1414–1425. https://doi.org/10.1007/s10803-007-0509-7.
Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual & Developmental Disability, 34(2), 142–152. https://doi.org/10.1080/13668250902845202.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). Biobehavioral Reviews, 33, 1204–1214.
Austin, J., Manning-Courtney, P., Johnson, M. L., Weber, R., Johnson, H., Murray, D., … Murray, M. (2016). Improving access to care at autism treatment centers: A System analysis approach. Pediatrics, 137(Supplement 2), S149–S157. https://doi.org/10.1542/peds.2015-2851M.
Autism Spectrum Disorders in the European Union (ASDEU, 2015–2018). Retrieved September 26, 2017, from http://asdeu.eu/.
Baio, J. (2018). Prevalence of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveillance Summaries. https://doi.org/10.15585/mmwr.ss6706a1.
Baker-Ericzén, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30(4), 194–204. https://doi.org/10.2511/rpsd.30.4.194.
Bethlehem, J. (2010). Selection bias in web surveys. International Statistical Review, 78(2), 161–188. https://doi.org/10.1111/j.1751-5823.2010.00112.x.
Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112(6), 450–461.
Bluth, K., Roberson, P. N. E., Billen, R. M., & Sams, J. M. (2013). A stress model for couples parenting children with autism spectrum disorders and the introduction of a mindfulness intervention. Journal of Family Theory & Review, 5(3), 194–213. https://doi.org/10.1111/jftr.12015.
Burke, M. M., & Goldman, S. E. (2015). Identifying the associated factors of mediation and due process in families of students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(5), 1345–1353. https://doi.org/10.1007/s10803-014-2294-4.
Casagrande, K. A., & Ingersoll, B. R. (2017). Service delivery outcomes in ASD: Role of parent education, empowerment, and professional partnerships. Journal of Child and Family Studies, 26(9), 2386–2395. https://doi.org/10.1007/s10826-017-0759-8.
Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081–1091. https://doi.org/10.1007/s10995-011-0833-6.
Crais, E. R., McComish, C. S., Humphreys, B. P., Watson, L. R., Baranek, G. T., Reznick, J. S., … Earls, M. (2014b). Pediatric healthcare professionals’ views on autism spectrum disorder screening at 12-18 months. Journal of Autism and Developmental Disorders, 44(9), 2311–2328. https://doi.org/10.1007/s10803-014-2101-2.
Crais, E. R., & Watson, L. R. (2014). Challenges and opportunities in early identification and intervention for children at-risk for autism spectrum disorders. International Journal of Speech-Language Pathology, 16(1), 23–29. https://doi.org/10.3109/17549507.2013.862860.
Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1.
Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. https://doi.org/10.1177/1362361315573636.
Daniels, A. M., Como, A., Kostadinova, K., Hergüner, S., Stosic, J., & Shih, A. (2017). Autism in southeast Europe: A survey of caregivers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 47, 2314–2325. https://doi.org/10.1007/s10803-017-3145-x.
Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism: The International Journal of Research and Practice, 18(5), 583–597. https://doi.org/10.1177/1362361313480277.
DePape, A.-M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. https://doi.org/10.1177/1049732314552455.
Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5(3), 190–200. https://doi.org/10.1002/aur.1225.
Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., DiGuiseppi, C., Nicholas, J. S., … Schieve, L. A. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study. PLoS ONE, 5(7), e11551. https://doi.org/10.1371/journal.pone.0011551.
Dymond, S. K., Gilson, C. L., & Myran, S. P. (2007). Services for children with autism spectrum disorders. Journal of Disability Policy Studies, 18(3), 133–147. https://doi.org/10.1177/10442073070180030201.
Fletcher-Watson, S., Apicella, F., Auyeung, B., Beranova, S., Bonnet-Brilhault, F., Canal-Bedia, R., … Yirmiya, N. (2017). Attitudes of the autism community to early autism research. Autism, 21(1), 61–74. https://doi.org/10.1177/1362361315626577.
García-Primo, P., Hellendoorn, A., Charman, T., Roeyers, H., Dereu, M., Roge, B., … Canal-Bedia, R. (2014). Screening for autism spectrum disorders: state of the art in Europe. European Child & Adolescent Psychiatry, 23(11), 1005–1021. https://doi.org/10.1007/s00787-014-0555-6.
Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451. https://doi.org/10.1177/1362361306066601.
Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., … Lipkin, P. H. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism, 19(7), 794–804. https://doi.org/10.1177/1362361315583818.
Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50(12), 970–976. https://doi.org/10.1111/j.1365-2788.2006.00933.x.
Griffith, G. M., Hastings, R. P., Nash, S., & Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with down syndrome and autism. Journal of Autism and Developmental Disorders, 40(5), 610–619. https://doi.org/10.1007/s10803-009-0906-1.
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.
Hock, R. M., Timm, T. M., & Ramisch, J. L. (2012). Parenting children with autism spectrum disorders: A crucible for couple relationships. Child and Family Social Work, 17(4), 406–415. https://doi.org/10.1111/j.1365-2206.2011.00794.x.
Hodgetts, S., Zwaigenbaum, L., & Nicholas, D. (2015). Profile and predictors of service needs for families of children with autism spectrum disorders. Autism, 19(6), 673–683. https://doi.org/10.1177/1362361314543531.
Infante-Rivard, C., & Cusson, A. (2018). Reflection on modern methods: Selection bias—a review of recent developments. International Journal of Epidemiology, 47(5), 1714–1722. https://doi.org/10.1093/ije/dyy138.
Ingersoll, B., Shannon, K., Berger, N., Pickard, K., & Holtz, B. (2017). Self-directed telehealth parent-mediated intervention for children with autism spectrum disorder: Examination of the potential reach and utilization in community settings. Journal of Medical Internet Research, 19(7), e248. https://doi.org/10.2196/jmir.7484.
Ingersoll, B., & Wainer, A. (2013). Initial efficacy of project ImPACT: A parent-mediated social communication intervention for young children with ASD. Journal of Autism and Developmental Disorders, 43(12), 2943–2952. https://doi.org/10.1007/s10803-013-1840-9.
Irvin, D. W., McBee, M., Boyd, B. A., Hume, K., & Odom, S. L. (2012). Child and family factors associated with the use of services for preschoolers with autism spectrum disorder. Research in Autism Spectrum Disorders, 6(1), 565–572. https://doi.org/10.1016/j.rasd.2011.07.018.
Kalkbrenner, A. E., Daniels, J. L., Emch, M., Morrissey, J., Poole, C., & Chen, J.-C. (2011). Geographic access to health services and diagnosis with an autism spectrum disorder. Annals of Epidemiology, 21(4), 304–310. https://doi.org/10.1016/j.annepidem.2010.11.010.
Kasari, C., Gulsrud, A., Paparella, T., Hellemann, G., & Berry, K. (2015). Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. Journal of Consulting and Clinical Psychology, 83(3), 554–563. https://doi.org/10.1037/a0039080.
Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. https://doi.org/10.1111/j.1468-3148.2010.00555.x.
Keusch, F. (2015). Why do people participate in Web surveys? Applying survey participation theory to Internet survey data collection. Management Review Quarterly, 65(3), 183–216. https://doi.org/10.1007/s11301-014-0111-y.
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122(6), e1149–1158. https://doi.org/10.1542/peds.2008-1057.
Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339.
Kuo, D. Z., Bird, T. M., & Tilford, J. M. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805. https://doi.org/10.1007/s10995-010-0648-x.
Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., et al. (2008). Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics: JDBP, 29(3), 152–160. https://doi.org/10.1097/DBP.0b013e318165c7a0.
Liptak, G. S., Stuart, T., & Auinger, P. (2006). Health care utilization and expenditures for children with autism: data from U.S. national samples. Journal of Autism and Developmental Disorders, 36(7), 871–879. https://doi.org/10.1007/s10803-006-0119-9.
Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111–122. https://doi.org/10.1177/1362361307077506.
McConachie, H., Parr, J. R., Glod, M., Hanratty, J., Livingstone, N., Oono, I. P., … Williams, K. (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment, 19(41), 1–506. https://doi.org/10.3310/hta19410.
McIntyre, L. L., & Zemantic, P. K. (2017). Examining services for young children with autism spectrum disorder: Parent satisfaction and predictors of service utilization. Early Childhood Education Journal, 45(6), 727–734. https://doi.org/10.1007/s10643-016-0821-y.
McKenzie, K., Forsyth, K., O’Hare, A., McClure, I., Rutherford, M., Murray, A., et al. (2015). Factors influencing waiting times for diagnosis of Autism Spectrum Disorder in children and adults. Research in Developmental Disabilities, 45–46, 300–306. https://doi.org/10.1016/j.ridd.2015.07.033.
Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 293–303. https://doi.org/10.1016/j.rasd.2011.05.011.
Murphy, M. A., & Ruble, L. A. (2012). A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders. Rural Special Education Quarterly, 31(3), 3–11. https://doi.org/10.1177/875687051203100302.
Ngui, E. M., & Flores, G. (2006). Satisfaction with care and ease of using health care services among parents of children with special health care needs: The roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics, 117(4), 1184–1196. https://doi.org/10.1542/peds.2005-1088.
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). A possible contra-indication for early diagnosis of Autistic Spectrum Conditions: Impact on parenting stress. Research in Autism Spectrum Disorders, 2(4), 707–715. https://doi.org/10.1016/j.rasd.2008.02.005.
Oswald, D. P., Haworth, S. M., Mackenzie, B. K., & Willis, J. H. (2017). Parental report of the diagnostic process and outcome: ASD compared with other developmental disabilities. Focus on Autism and Other Developmental Disabilities, 32(2), 152–160. https://doi.org/10.1177/1088357615587500.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. https://doi.org/10.1177/1362361314529627.
Pickles, A., Couteur, A. L., Leadbitter, K., Salomone, E., Cole-Fletcher, R., Tobin, H., … Green, J. (2016). Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. Lancet, 388(10059), 2501–2509. https://doi.org/10.1016/S0140-6736(16)31229-6.
Robins, D. L., Casagrande, K., Barton, M., Chen, C.-M. A., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45. https://doi.org/10.1542/peds.2013-1813.
Rogers, C. L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism, 20(7), 820–831. https://doi.org/10.1177/1362361315611109.
Sacrey, L.-A. R., Zwaigenbaum, L., Bryson, S., Brian, J., Smith, I. M., Roberts, W., … Armstrong, V. (2015). Can parents’ concerns predict autism spectrum disorder? A prospective study of high-risk siblings from 6 to 36 months of age. Journal of the American Academy of Child and Adolescent Psychiatry, 54(6), 470–478. https://doi.org/10.1016/j.jaac.2015.03.014.
Salomone, E., Charman, T., McConachie, H., Warreyn, P., & Working Group 4, COST Action ‘Enhancing the Scientific Study of Early Autism’. (2015). Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in Europe. European Journal of Pediatrics, 174(10), 1277–1285. https://doi.org/10.1007/s00431-015-2531-7.
Stadnick, N. A., Drahota, A., & Brookman-Frazee, L. (2013). Parent perspectives of an evidence-based intervention for children with autism served in community mental health clinics. Journal of Child and Family Studies, 22(3), 414–422. https://doi.org/10.1007/s10826-012-9594-0.
Summers, J. A., Hoffman, L., Marquis, J., Turnbull, A., Poston, D., & Nelson, L. L. (2005). Measuring the quality of family-professional partnerships in special education services. Exceptional Children, 72(1), 65–81. https://doi.org/10.1177/001440290507200104.
Thomas, K. C., Parish, S. L., Rose, R. A., & Kilany, M. (2012a). Access to care for children with autism in the context of state Medicaid reimbursement. Maternal and Child Health Journal, 16(8), 1636–1644. https://doi.org/10.1007/s10995-011-0862-1.
Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., et al. (2012b). The association of autism diagnosis with socioeconomic status. Autism: The International Journal of Research and Practice, 16(2), 201–213. https://doi.org/10.1177/1362361311413397.
Wang, L., Mandell, D. S., Lawer, L., Cidav, Z., & Leslie, D. L. (2013). Healthcare service use and costs for autism spectrum disorder: A comparison between medicaid and private insurance. Journal of Autism and Developmental Disorders, 43(5), 1057–1064. https://doi.org/10.1007/s10803-012-1649-y.
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16(3), 261–274. https://doi.org/10.1177/1362361311422708.
World Health Organization. (2018). International classification of diseases for mortality and morbidity statistics (11th Revision). Retrieved from https://icd.who.int/browse11/l-m/en.
Zablotsky, B., Colpe, L. J., Pringle, B. A., Kogan, M. D., Rice, C., & Blumberg, S. J. (2017). Age of parental concern, diagnosis, and service initiation among children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 122(1), 49–61. https://doi.org/10.1352/1944-7558-122.1.49.
Zhao, S., Chen, W.-J., Dhar, S. U., Eble, T. N., Kwok, O.-M., & Chen, L.-S. (2019). Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states. Autism Research, 12(8), 1162–1170. https://doi.org/10.1002/aur.2152.
Zuckerman, K. E., Lindly, O. J., & Sinche, B. K. (2015). Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis. Journal of Pediatrics, 166(6), 1431–1439.e1. https://doi.org/10.1016/j.jpeds.2015.03.007.
The authors would like to thank all those who participated in this study, and express their gratitude for the European Parliament grant EC DG-SANTÉ 2014/C2/035.
This study was funded by the Spanish Ministry of Economy and Competitiveness [Grant PSI2016-80575-R], the European Union, DGSANCO, [Ref.: SANCO/2014/C2/035], and the Spanish Ministry of Education, Culture and Sport [Ref.: BOE-B-2017-2646]. These funders had no role in the study design, the collection, analysis or interpretation of the data, the writing of the manuscript, or the decision to submit the paper for publication.
Conflict of interest
The authors have no conflict of interest to declare.
Ethical approval was given by the Research Ethics Committee of the University of Salamanca, Spain (201700008785).
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
About this article
Cite this article
Bejarano-Martín, Á., Canal-Bedia, R., Magán-Maganto, M. et al. Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives. J Autism Dev Disord 50, 3380–3394 (2020). https://doi.org/10.1007/s10803-019-04253-0
- Autism spectrum disorder
- Early detection
- Patient satisfaction
- Mental health services