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02-08-2022 | Original Paper

The Diagnostic Period for Autism: Risk and Protective Factors for Family Quality of Life in Early Childhood

Auteurs: Mélina Rivard, Diane Morin, Patrick Coulombe, Marjorie Morin, Catherine Mello

Gepubliceerd in: Journal of Autism and Developmental Disorders

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Abstract

During the diagnostic evaluation period for autism or intellectual disability (ID), families of young children are at risk for poor adjustment. The present study aimed to document family quality of life (FQOL), along with associated risk and protective factors, during this critical step of families’ services trajectory. FQOL was measured in a large sample of families of children recently diagnosed with a neurodevelopmental disorder and examined in relation to the type of services received, children’s clinical profile, and family variables. FQOL was related to types of services, children’s challenging behavior, parenting stress, and several aspects of family composition and status. These findings highlight a need for mental health support for parents, coaching interventions for challenging behaviors, and family-centered supports.
Literatuur
go back to reference Abidin, R. R. (1995). Parenting Stress Index: Manual (3rd ed.). Psychological Assessment Resources Abidin, R. R. (1995). Parenting Stress Index: Manual (3rd ed.). Psychological Assessment Resources
go back to reference Achenbach, T. M., & Rescorla, L. A. (2000). Manual for the ASEBA preschool forms and profiles. University of Vermont, Research Center for Children, Youth, & Families Achenbach, T. M., & Rescorla, L. A. (2000). Manual for the ASEBA preschool forms and profiles. University of Vermont, Research Center for Children, Youth, & Families
go back to reference Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASEBA school-age forms & profiles. University of Vermont, Research Center for Children, Youth, & Families Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASEBA school-age forms & profiles. University of Vermont, Research Center for Children, Youth, & Families
go back to reference Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2019). A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health & Social Care in the Community, 27(4), e143–e157. https://​doi.​org/​10.​1111/​hsc.​12691 CrossRef Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2019). A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis. Health & Social Care in the Community, 27(4), e143–e157. https://​doi.​org/​10.​1111/​hsc.​12691 CrossRef
go back to reference Dieleman, L. M., De Pauw, S. S., Soenens, B., Beyers, W., & Prinzie, P. (2017). Examining bidirectional relationships between parenting and child maladjustment in youth with autism spectrum disorder: A 9-year longitudinal study. Development and Psychopathology, 29(4), 1199–1213 CrossRef Dieleman, L. M., De Pauw, S. S., Soenens, B., Beyers, W., & Prinzie, P. (2017). Examining bidirectional relationships between parenting and child maladjustment in youth with autism spectrum disorder: A 9-year longitudinal study. Development and Psychopathology, 29(4), 1199–1213 CrossRef
go back to reference Enders, C. K. (2010). Applied missing data analysis. Guilford Press Enders, C. K. (2010). Applied missing data analysis. Guilford Press
go back to reference Harrison, P. L., & Oakland, T. (2015). Adaptive Behavior Assessment System – Third Edition. Western Psychological Services Harrison, P. L., & Oakland, T. (2015). Adaptive Behavior Assessment System – Third Edition. Western Psychological Services
go back to reference Hennel, S., Coates, C., Symeonides, C., Gulenc, A., Smith, L., Price, A. M., & Hiscock, H. (2016). Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice. Journal of Paediatrics and Child Health, 52(5), 506–511 CrossRef Hennel, S., Coates, C., Symeonides, C., Gulenc, A., Smith, L., Price, A. M., & Hiscock, H. (2016). Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice. Journal of Paediatrics and Child Health, 52(5), 506–511 CrossRef
go back to reference Ivanova, M. Y., Achenbach, T. M., Rescorla, L. A., Harder, V. S., Ang, R. P., Bilenberg, N., Bjarnadottir, G., Capron, C., De Pauw, S. S. W., Dias, P., Dobrean, A., Doepfner, M., Duyme, M., Eapen, V., Erol, N., Esmaeili, E. M., Ezpeleta, L., Frigerio, A., Gonçalves, M. M., & Verhulst, F. C. (2010). Preschool psychopathology reported by parents in 23 societies: Testing the seven-syndrome model of the child behavior checklist for ages 1.5-5. Journal of the American Academy of Child and Adolescent Psychiatry, 49(12), 1215–1224. https://​doi.​org/​10.​1016/​j.​jaac.​2010.​08.​019 CrossRefPubMedPubMedCentral Ivanova, M. Y., Achenbach, T. M., Rescorla, L. A., Harder, V. S., Ang, R. P., Bilenberg, N., Bjarnadottir, G., Capron, C., De Pauw, S. S. W., Dias, P., Dobrean, A., Doepfner, M., Duyme, M., Eapen, V., Erol, N., Esmaeili, E. M., Ezpeleta, L., Frigerio, A., Gonçalves, M. M., & Verhulst, F. C. (2010). Preschool psychopathology reported by parents in 23 societies: Testing the seven-syndrome model of the child behavior checklist for ages 1.5-5. Journal of the American Academy of Child and Adolescent Psychiatry, 49(12), 1215–1224. https://​doi.​org/​10.​1016/​j.​jaac.​2010.​08.​019 CrossRefPubMedPubMedCentral
go back to reference Kranzler, J. H., & Floyd, R. G. (2013). Assessing intelligence in children and adolescents: A practical guide. Guilford Press Kranzler, J. H., & Floyd, R. G. (2013). Assessing intelligence in children and adolescents: A practical guide. Guilford Press
go back to reference Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services. Autism, 8(4), 387–407 CrossRef Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services. Autism, 8(4), 387–407 CrossRef
go back to reference Mello, C., Rivard, M., Morin, D., Patel, S., & Morin, M. (2021). Symptom severity, internalized and externalized behavioral and emotional problems: Links with parenting stress in mothers of children recently diagnosed with autism. Journal of Autism and Developmental Disorders, 1–14. https://​doi.​org/​10.​1007/​s10803-021-05131-4 Mello, C., Rivard, M., Morin, D., Patel, S., & Morin, M. (2021). Symptom severity, internalized and externalized behavioral and emotional problems: Links with parenting stress in mothers of children recently diagnosed with autism. Journal of Autism and Developmental Disorders, 1–14. https://​doi.​org/​10.​1007/​s10803-021-05131-4
go back to reference Morin, M., Abouzeid, N., Rivard, M., Morin, D., Bolduc, M., Blanchard-Beauchemin, M., & et Mercier, C. (2020). Guide d’implantation d’un programme d’évaluation diagnostique du trouble du spectre de l’autisme, de la déficience intellectuelle et du retard global de développement auprès d’enfants de 0 à 5 ans. Laboratoire Épaulard, Département de psychologie, Université du Québec à Montréal. https://​12a37703-c89e-45e0-b8ba-09b35c1f987d.​filesusr.​com/​ugd/​ec40b5_​f3d5151eb2274f19bf57e60aee33e228.pdf Morin, M., Abouzeid, N., Rivard, M., Morin, D., Bolduc, M., Blanchard-Beauchemin, M., & et Mercier, C. (2020). Guide d’implantation d’un programme d’évaluation diagnostique du trouble du spectre de l’autisme, de la déficience intellectuelle et du retard global de développement auprès d’enfants de 0 à 5 ans. Laboratoire Épaulard, Département de psychologie, Université du Québec à Montréal. https://​12a37703-c89e-45e0-b8ba-09b35c1f987d.​filesusr.​com/​ugd/​ec40b5_​f3d5151eb2274f19bf57e60aee33e228.pdf
go back to reference Rescorla, L. A., Achenbach, T. M., Ivanova, M. Y., Bilenberg, N., Bjarnadottir, G., Denner, S., Dias, P., Dobrean, A., Döpfner, M., Frigerio, A., Gonçalves, M., Guðmundsson, H., Jusiene, R., Kristensen, S., Lecannelier, F., Leung, P. W. L., Liu, J., Löbel, S. P., Machado, B. C., & Verhulst, F. C. (2012). Behavioral/emotional problems of preschoolers: Caregiver/teacher reports from 15 societies. Journal of Emotional and Behavioral Disorders, 20(2), 68–81. https://​doi.​org/​10.​1177/​1063426611434158​ CrossRefPubMedPubMedCentral Rescorla, L. A., Achenbach, T. M., Ivanova, M. Y., Bilenberg, N., Bjarnadottir, G., Denner, S., Dias, P., Dobrean, A., Döpfner, M., Frigerio, A., Gonçalves, M., Guðmundsson, H., Jusiene, R., Kristensen, S., Lecannelier, F., Leung, P. W. L., Liu, J., Löbel, S. P., Machado, B. C., & Verhulst, F. C. (2012). Behavioral/emotional problems of preschoolers: Caregiver/teacher reports from 15 societies. Journal of Emotional and Behavioral Disorders, 20(2), 68–81. https://​doi.​org/​10.​1177/​1063426611434158​ CrossRefPubMedPubMedCentral
go back to reference Rescorla, L. A., Bochicchio, L., Achenbach, T. M., Ivanova, M. Y., Almqvist, F., Begovac, I., Bilenberg, N., Bird, H., Dobrean, A., Erol, N., Fombonne, E., Fonseca, A., Frigerio, A., Fung, D. S. S., Lambert, M. C., Leung, P. W. L., Liu, X., Marković, I., Markovic, J., & Verhulst, F. C. (2014). Parent-teacher agreement on children’s problems in 21 societies. Journal of Clinical Child and Adolescent Psychology: The Official Journal for the Society of Clinical Child and Adolescent Psychology American Psychological Association Division, 53(4), 627–642. https://​doi.​org/​10.​1080/​15374416.​2014.​900719. 43 CrossRef Rescorla, L. A., Bochicchio, L., Achenbach, T. M., Ivanova, M. Y., Almqvist, F., Begovac, I., Bilenberg, N., Bird, H., Dobrean, A., Erol, N., Fombonne, E., Fonseca, A., Frigerio, A., Fung, D. S. S., Lambert, M. C., Leung, P. W. L., Liu, X., Marković, I., Markovic, J., & Verhulst, F. C. (2014). Parent-teacher agreement on children’s problems in 21 societies. Journal of Clinical Child and Adolescent Psychology: The Official Journal for the Society of Clinical Child and Adolescent Psychology American Psychological Association Division, 53(4), 627–642. https://​doi.​org/​10.​1080/​15374416.​2014.​900719. 43 CrossRef
go back to reference Rivard, M., Mello, C., Mercier, C., Lefebvre, C., Millau, M., Morin, M., Morin, D., Abouzeid, N., & Chatenoud, C. (2020a). Development of a questionnaire to assess the quality of service trajectories in autism spectrum disorder from families’ perspective. Journal of Applied Research in Intellectual Disabilities, 33(6), 1500–1511. https://​doi.​org/​10.​1111/​jar.​12777 CrossRefPubMed Rivard, M., Mello, C., Mercier, C., Lefebvre, C., Millau, M., Morin, M., Morin, D., Abouzeid, N., & Chatenoud, C. (2020a). Development of a questionnaire to assess the quality of service trajectories in autism spectrum disorder from families’ perspective. Journal of Applied Research in Intellectual Disabilities, 33(6), 1500–1511. https://​doi.​org/​10.​1111/​jar.​12777 CrossRefPubMed
go back to reference Rivard, M., Millau, M., Mello, C., Clément, C., Mejia-Cardenas, C., Boulé, M., & Magnan, C. (2020b). Immigrant families of children with autism disorder’s perceptions of early intensive behavioral intervention services. Journal of Developmental and Physical Disabilities, 1–19. https://​doi.​org/​10.​1007/​s10882-020-09764-8 Rivard, M., Millau, M., Mello, C., Clément, C., Mejia-Cardenas, C., Boulé, M., & Magnan, C. (2020b). Immigrant families of children with autism disorder’s perceptions of early intensive behavioral intervention services. Journal of Developmental and Physical Disabilities, 1–19. https://​doi.​org/​10.​1007/​s10882-020-09764-8
go back to reference Rochefort, C., Paradis, A., Rivard, M., & Dewar, M. (2022, in revision). Siblings of Individuals with Developmental Disabilities: A Scoping Review Using Trauma Theory Rochefort, C., Paradis, A., Rivard, M., & Dewar, M. (2022, in revision). Siblings of Individuals with Developmental Disabilities: A Scoping Review Using Trauma Theory
go back to reference Roid, G. H., Miller, L., Pomplun, M., & Koch, C. (2013). Leiter International Performance Scale- Third Edition. Western Psychological Services Roid, G. H., Miller, L., Pomplun, M., & Koch, C. (2013). Leiter International Performance Scale- Third Edition. Western Psychological Services
go back to reference Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://​doi.​org/​10.​1007/​s40615-019-00575-y CrossRefPubMedPubMedCentral Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://​doi.​org/​10.​1007/​s40615-019-00575-y CrossRefPubMedPubMedCentral
go back to reference Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49 CrossRef Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49 CrossRef
go back to reference Vaz, S., Thomson, A., Cuomo, B., Falkmer, T., Chamberlain, A., & Black, M. H. (2021). Co-occurring intellectual disability and autism: Associations with stress, coping, time use, and quality of life in caregivers. Research in Autism Spectrum Disorders, 84, 101765 CrossRef Vaz, S., Thomson, A., Cuomo, B., Falkmer, T., Chamberlain, A., & Black, M. H. (2021). Co-occurring intellectual disability and autism: Associations with stress, coping, time use, and quality of life in caregivers. Research in Autism Spectrum Disorders, 84, 101765 CrossRef
go back to reference Walton, K. M. (2016). Risk factors for behavioral and emotional difficulties in siblings of children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 121(6), 533–549 CrossRef Walton, K. M. (2016). Risk factors for behavioral and emotional difficulties in siblings of children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 121(6), 533–549 CrossRef
go back to reference Wechsler, D. (2012). Wechsler Preschool and Primary Scale of Intelligence (4th ed.). Pearson Wechsler, D. (2012). Wechsler Preschool and Primary Scale of Intelligence (4th ed.). Pearson
go back to reference Whittingham, K., & Coyne, L. (2019). Acceptance and commitment therapy: The clinician’s guide for supporting parents. Academic Press Whittingham, K., & Coyne, L. (2019). Acceptance and commitment therapy: The clinician’s guide for supporting parents. Academic Press
go back to reference Zaidman-Zait, A., Mirenda, P., Duku, E., Szatmari, P., Georgiades, S., Volden, J., Zwaigenbaum, L., Vaillancourt, T., Bryson, S., & Smith, I. (2014). Examination of bidirectional relationships between parent stress and two types of problem behavior in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44(8), 1908–1917 CrossRef Zaidman-Zait, A., Mirenda, P., Duku, E., Szatmari, P., Georgiades, S., Volden, J., Zwaigenbaum, L., Vaillancourt, T., Bryson, S., & Smith, I. (2014). Examination of bidirectional relationships between parent stress and two types of problem behavior in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44(8), 1908–1917 CrossRef
go back to reference Zarafshan, H., Mohammadi, M. R., Abolhassani, F., Motevalian, S. A., Sepasi, N., & Sharifi, V. (2019). Current status of health and social services for children with autism in Iran: Parents’ perspectives. Iranian Journal of Psychiatry, 14(1), 76–83 PubMedPubMedCentral Zarafshan, H., Mohammadi, M. R., Abolhassani, F., Motevalian, S. A., Sepasi, N., & Sharifi, V. (2019). Current status of health and social services for children with autism in Iran: Parents’ perspectives. Iranian Journal of Psychiatry, 14(1), 76–83 PubMedPubMedCentral
Metagegevens
Titel
The Diagnostic Period for Autism: Risk and Protective Factors for Family Quality of Life in Early Childhood
Auteurs
Mélina Rivard
Diane Morin
Patrick Coulombe
Marjorie Morin
Catherine Mello
Publicatiedatum
02-08-2022
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-022-05686-w