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Gepubliceerd in: Journal of Autism and Developmental Disorders 3/2017

10-01-2017 | Original Paper

The Longitudinal Effects of Parenting on Adaptive Behavior in Children with Fragile X Syndrome

Auteurs: Steven F. Warren, Nancy Brady, Kandace K. Fleming, Laura J. Hahn

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2017

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Abstract

Several studies have reported declines in adaptive behavior amongst children with fragile X syndrome (FXS) starting in middle childhood. We examined the effects of maternal responsivity on adaptive behavior in 55 children with FXS visited 5–6 times in their homes from early through middle childhood. Our analyses indicated that sustained maternal responsivity had a significant positive impact on the trajectories of communication and to a lesser extent other adaptive behavior domains through middle childhood with many effects remaining significant after controlling for autism symptoms and developmental level. For children who showed declines in adaptive behavior during middle childhood, sustained high levels of maternal responsivity minimized the amount of decline observed in the communication, socialization, and daily living domains.
Literatuur
go back to reference Bailey, D. B. Jr., Hatton, D., Skinner, M., & Mesibov, G. (2001). Autistic behavior, FMR1 protein, and developmental trajectories in young males with fragile X syndrome. Journal of Autism & Developmental Disorders, 31(2), 165–174. Bailey, D. B. Jr., Hatton, D., Skinner, M., & Mesibov, G. (2001). Autistic behavior, FMR1 protein, and developmental trajectories in young males with fragile X syndrome. Journal of Autism & Developmental Disorders, 31(2), 165–174.
go back to reference Bailey, D. B., Raspa, M., Olmstead, M., & Holiday, D. B. (2008). Co-occuring conditions associated with FMR1 gene variations: Findings from a national parent survey. American Journal of Medical Genetics, 3(16), 2060–2069. doi: 10.​1002/​ajmg.​a.​32439. CrossRef Bailey, D. B., Raspa, M., Olmstead, M., & Holiday, D. B. (2008). Co-occuring conditions associated with FMR1 gene variations: Findings from a national parent survey. American Journal of Medical Genetics, 3(16), 2060–2069. doi: 10.​1002/​ajmg.​a.​32439. CrossRef
go back to reference Bayley, N. (1993). Bayley Scales of Infant Development (2nd edn.). San Antonio, TX: The Psychological Corporation. Bayley, N. (1993). Bayley Scales of Infant Development (2nd edn.). San Antonio, TX: The Psychological Corporation.
go back to reference Brady, N. C., Warren, S. F., Fleming, K., Keller, J., & Sterling, A. (2014). Effect of sustained maternal responsivity on later vocabulary development in children with Fragile X Syndrome. American Journal of Speech, Language, and Hearing Research, 57, 212–226. doi: 10.​1044/​1092-4388(2013/​12-0341)212. CrossRef Brady, N. C., Warren, S. F., Fleming, K., Keller, J., & Sterling, A. (2014). Effect of sustained maternal responsivity on later vocabulary development in children with Fragile X Syndrome. American Journal of Speech, Language, and Hearing Research, 57, 212–226. doi: 10.​1044/​1092-4388(2013/​12-0341)212. CrossRef
go back to reference Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd edn.). Hillsdale, NJ: Lawrence Erlbaum Associates. Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd edn.). Hillsdale, NJ: Lawrence Erlbaum Associates.
go back to reference Crawford, D. C., Acuna, J. M., & Sherman, S. L. (2001). FMR1 and the fragile X syndrome: Human genome epidemiology review. Genetics in Medicine, 3(5), 359–371. CrossRefPubMedPubMedCentral Crawford, D. C., Acuna, J. M., & Sherman, S. L. (2001). FMR1 and the fragile X syndrome: Human genome epidemiology review. Genetics in Medicine, 3(5), 359–371. CrossRefPubMedPubMedCentral
go back to reference Devys, D., Lutz, Y., Rouyer, N., Bellocq, J. P., & Mandel, J. L. (1993). The FMR-1 protein is cytoplasmic, most abundant in neurons and appears normal in carriers of a fragile X premutation. Nature Genetics, 4(4), 335–340. doi: 10.​1038/​ng0893-335. CrossRefPubMed Devys, D., Lutz, Y., Rouyer, N., Bellocq, J. P., & Mandel, J. L. (1993). The FMR-1 protein is cytoplasmic, most abundant in neurons and appears normal in carriers of a fragile X premutation. Nature Genetics, 4(4), 335–340. doi: 10.​1038/​ng0893-335. CrossRefPubMed
go back to reference Ditterline, J., & Oakland, T. (2009). Relationships between adaptive behavior and impairment. In J. Naglieri & S. Goldstein (Eds.), Assessing impairment: From theory to practice (pp. 31–48). New York, NY: Springer Science + Business Media, LLC. doi: 10.​1007/​978-0-387-87542-2. CrossRef Ditterline, J., & Oakland, T. (2009). Relationships between adaptive behavior and impairment. In J. Naglieri & S. Goldstein (Eds.), Assessing impairment: From theory to practice (pp. 31–48). New York, NY: Springer Science + Business Media, LLC. doi: 10.​1007/​978-0-387-87542-2. CrossRef
go back to reference Dykens, E. M., Hodapp, R., Ort, S., & Leckman, J. (1993). Trajectories and profiles of adaptive behavior in males with fragile X syndrome. Jounral of Autism and Developmental Disorders, 23(1), 135–145. CrossRef Dykens, E. M., Hodapp, R., Ort, S., & Leckman, J. (1993). Trajectories and profiles of adaptive behavior in males with fragile X syndrome. Jounral of Autism and Developmental Disorders, 23(1), 135–145. CrossRef
go back to reference Dykens, E. M., Ort, S., Cohen, I., Finucane, B., Spiridigliozzi, G., Lachiewicz, A., et al. (1996). Trajectories and profiles of adaptive behavior in males with fragile X syndrome. Journal of Autism and Developmental Disorders, 3, 287–301. CrossRef Dykens, E. M., Ort, S., Cohen, I., Finucane, B., Spiridigliozzi, G., Lachiewicz, A., et al. (1996). Trajectories and profiles of adaptive behavior in males with fragile X syndrome. Journal of Autism and Developmental Disorders, 3, 287–301. CrossRef
go back to reference Fisch, G., Carpenter, N., Holden, J. J., Howard-Peebles, P. N., Maddalena, A., Borghgraef, M., et al. (1999a). Longitudinal changes in cognitive and adaptive behavior in fragile X females: A prospective multicenter analysis. American Journal of Medical Genetics, 83(4), 308–312. Fisch, G., Carpenter, N., Holden, J. J., Howard-Peebles, P. N., Maddalena, A., Borghgraef, M., et al. (1999a). Longitudinal changes in cognitive and adaptive behavior in fragile X females: A prospective multicenter analysis. American Journal of Medical Genetics, 83(4), 308–312.
go back to reference Fisch, G., Carpenter, N. J., Holden, J. J., Simensen, R., Howard-Peebles, P. N., Maddalena, A., et al. (1999b). Longitudinal assessment of adaptive and maladaptive behaviors in fragile X males: Growth, development, and profiles. American Journal of Medical Genetics, 83(4), 257–263. Fisch, G., Carpenter, N. J., Holden, J. J., Simensen, R., Howard-Peebles, P. N., Maddalena, A., et al. (1999b). Longitudinal assessment of adaptive and maladaptive behaviors in fragile X males: Growth, development, and profiles. American Journal of Medical Genetics, 83(4), 257–263.
go back to reference Fisch, G., Carpenter, N., Howard-Peebles, P. N., Holden, J. J. A., Tarleton, J., Simensen, R., & Battaglia, A. (2012). Developmental trajectories in syndromes with intellectual disability, with a focus on Wolf-Hirschhorn and its cognitive-behavioral profile. American Journal on Intellectual and Developmental Disabilities, 117(2), 167–179. doi: 10.​1352/​1944-7558-117.​2.​167. CrossRefPubMed Fisch, G., Carpenter, N., Howard-Peebles, P. N., Holden, J. J. A., Tarleton, J., Simensen, R., & Battaglia, A. (2012). Developmental trajectories in syndromes with intellectual disability, with a focus on Wolf-Hirschhorn and its cognitive-behavioral profile. American Journal on Intellectual and Developmental Disabilities, 117(2), 167–179. doi: 10.​1352/​1944-7558-117.​2.​167. CrossRefPubMed
go back to reference Fisch, G., Simensen, R., & Schroer, R. (2002). Longitudinal changes in cognitive and adaptive behavior scores in children and adolescents with the fragile X mutation or autism. Journal of Autism and Developmental Disorders, 32(2), 107–114. doi: 10.​1023/​A:​1014888505185. CrossRefPubMed Fisch, G., Simensen, R., & Schroer, R. (2002). Longitudinal changes in cognitive and adaptive behavior scores in children and adolescents with the fragile X mutation or autism. Journal of Autism and Developmental Disorders, 32(2), 107–114. doi: 10.​1023/​A:​1014888505185. CrossRefPubMed
go back to reference Freund, L. S., Peebles, C., Aylward, E., & Reiss, A. L. (1995). Preliminary report on cognitive and adaptive behaviors in preschool-ages males with fragile X. Developmental Brain Dysfunction, 8, 242–251. Freund, L. S., Peebles, C., Aylward, E., & Reiss, A. L. (1995). Preliminary report on cognitive and adaptive behaviors in preschool-ages males with fragile X. Developmental Brain Dysfunction, 8, 242–251.
go back to reference Freund, L. S., Reiss, A. L., & Abrams, M. T. (1993). Psychiatric Disorders associated with fragile X in the young female. Pediatrics, 91(2), 321–329. PubMed Freund, L. S., Reiss, A. L., & Abrams, M. T. (1993). Psychiatric Disorders associated with fragile X in the young female. Pediatrics, 91(2), 321–329. PubMed
go back to reference Goldsmith, D. F., & Rogoff, B. (1995). Sensitivity and teaching by dysphoric and nondysphoric women in structured versus unstructured situations. Developmental Psychology, 31(3), 388. CrossRef Goldsmith, D. F., & Rogoff, B. (1995). Sensitivity and teaching by dysphoric and nondysphoric women in structured versus unstructured situations. Developmental Psychology, 31(3), 388. CrossRef
go back to reference Gorsuch, R. L. (2003). Factor analysis. In J. A. Schinka & W. F. Velicer (Eds.), Handbook of psychology: Research methods in psychology (Vol 2) (pp. 143–146). Hoboken, NJ: Wiley. Gorsuch, R. L. (2003). Factor analysis. In J. A. Schinka & W. F. Velicer (Eds.), Handbook of psychology: Research methods in psychology (Vol 2) (pp. 143–146). Hoboken, NJ: Wiley.
go back to reference Hagerman, R. J. (2007). Etiology, diagnosis, and development in fragile X syndrome. In J. E. Roberts, R. S. Chapman & S. F. Warren (Eds.), Speech and language development and intervention in down syndrome and fragile X syndrome (pp. 27–42). Baltimore, MD: Brookes. Hagerman, R. J. (2007). Etiology, diagnosis, and development in fragile X syndrome. In J. E. Roberts, R. S. Chapman & S. F. Warren (Eds.), Speech and language development and intervention in down syndrome and fragile X syndrome (pp. 27–42). Baltimore, MD: Brookes.
go back to reference Hagerman, R. J., & Hagerman, P. J. (2002). The fragile X premutation: into the phenotypic fold. Current Opinion in Genetics and Development, 12(3), 278–283. CrossRefPubMed Hagerman, R. J., & Hagerman, P. J. (2002). The fragile X premutation: into the phenotypic fold. Current Opinion in Genetics and Development, 12(3), 278–283. CrossRefPubMed
go back to reference Hart, B. & Risley, T.R. (1999). The social world of learning to talk. Baltimore: Paul Brookes Publishing Co. Hart, B. & Risley, T.R. (1999). The social world of learning to talk. Baltimore: Paul Brookes Publishing Co.
go back to reference Hauser-Cram, P., Warfield, M., Shonkoff, J. P., & Krauss, M. (2001). Children with disabilities: A longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development, 66(3), 1–5. doi: 10.​1111/​1540-5834.​00151. CrossRef Hauser-Cram, P., Warfield, M., Shonkoff, J. P., & Krauss, M. (2001). Children with disabilities: A longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development, 66(3), 1–5. doi: 10.​1111/​1540-5834.​00151. CrossRef
go back to reference Legerstee, M., Vargehese, J., & van Beek, Y. (2002). Effects of maintaining and redirecting infant attention on the production of referential communication in infants with and without Down syndrome. Journal of Child Language, 29(01), 23–48. doi: 10.​1017/​S030500090100489​5. CrossRefPubMed Legerstee, M., Vargehese, J., & van Beek, Y. (2002). Effects of maintaining and redirecting infant attention on the production of referential communication in infants with and without Down syndrome. Journal of Child Language, 29(01), 23–48. doi: 10.​1017/​S030500090100489​5. CrossRefPubMed
go back to reference Mailick, M., Greenberg, J. S., Smith, L. E., Sterling, A., Brady, N., Warren, S. F., & Hong, J. (2014). Fragile X–associated disorders: How the family environment and genotype interact. In J. A. Burack & L. A. Schmidt (Eds.), Cultural and Contextual Perspectives on Developmental Risk and Well-Being (pp. 221–253). New York, NY: Cambridge University Press. CrossRef Mailick, M., Greenberg, J. S., Smith, L. E., Sterling, A., Brady, N., Warren, S. F., & Hong, J. (2014). Fragile X–associated disorders: How the family environment and genotype interact. In J. A. Burack & L. A. Schmidt (Eds.), Cultural and Contextual Perspectives on Developmental Risk and Well-Being (pp. 221–253). New York, NY: Cambridge University Press. CrossRef
go back to reference Mayes, S. D., Calhoun, S. L., Murray, M. J., Morrow, J. D., Yurich, K. K. L., Mahr, F., & Petersen, C. (2009). Comparison of scores on the Checklist of Autism Spectrum Disorder, Childhood Autism Rating Scale, and Gilliam Asperger's Disorder Scale for children with low functioing autism, high functioning autism, Asperger's disorder, ADHD and typical development. Journal of Autism and Developmental Disorders, 39(12),1682–1693. Mayes, S. D., Calhoun, S. L., Murray, M. J., Morrow, J. D., Yurich, K. K. L., Mahr, F., & Petersen, C. (2009). Comparison of scores on the Checklist of Autism Spectrum Disorder, Childhood Autism Rating Scale, and Gilliam Asperger's Disorder Scale for children with low functioing autism, high functioning autism, Asperger's disorder, ADHD and typical development. Journal of Autism and Developmental Disorders, 39(12),1682–1693.
go back to reference Mazzocco, M. M. M. (2000). Advances in research on the fragile X syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 6(2), 96–106. CrossRefPubMed Mazzocco, M. M. M. (2000). Advances in research on the fragile X syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 6(2), 96–106. CrossRefPubMed
go back to reference Mullen, E. (1995). Mullen Scales of Early Learning. Circle Pines, MN: American Guidance Service. Mullen, E. (1995). Mullen Scales of Early Learning. Circle Pines, MN: American Guidance Service.
go back to reference Noldus Information Technology (2008). The Observer XT (Version 8.0) [Computer software]. Wageningen. The Netherlands: Author. Noldus Information Technology (2008). The Observer XT (Version 8.0) [Computer software]. Wageningen. The Netherlands: Author.
go back to reference Osofsky, J. D., Thompson, M. D., Shonkoff, J. P., & Meisels, S. J. (2000). Adaptive and maladaptive parenting: Perspectives on risk and protective factors. Handbook of Early Childhood Intervention, 2, 54–75. CrossRef Osofsky, J. D., Thompson, M. D., Shonkoff, J. P., & Meisels, S. J. (2000). Adaptive and maladaptive parenting: Perspectives on risk and protective factors. Handbook of Early Childhood Intervention, 2, 54–75. CrossRef
go back to reference Psychoeducation. Journal of Autism and Developmental Disorders, 46, 1737–1747. Psychoeducation. Journal of Autism and Developmental Disorders, 46, 1737–1747.
go back to reference Roberts, J. E., Tonnesen, B. L., Lindsay, M. M., Ford, A. L., Golden, R. N., & Bailey, D. B. (2016). Trajectory and predictors of depression and anxiety disorders in mothers with the FMR1 premutation. Biological Psychiatry, 79, 850–857. CrossRefPubMed Roberts, J. E., Tonnesen, B. L., Lindsay, M. M., Ford, A. L., Golden, R. N., & Bailey, D. B. (2016). Trajectory and predictors of depression and anxiety disorders in mothers with the FMR1 premutation. Biological Psychiatry, 79, 850–857. CrossRefPubMed
go back to reference Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The Childhood Autism Rating Scale (CARS): For diagnostic screening and classification of autism. New York: Irvington. Schopler, E., Reichler, R. J., & Renner, B. R. (1988). The Childhood Autism Rating Scale (CARS): For diagnostic screening and classification of autism. New York: Irvington.
go back to reference Shire, S., Gulsrud, A., & Kasari, C. (2016). Increasing responsive parent–child interactions and joint engagement: Comparing the influence of parent-mediated intervention and parent psychoeducation. Journal of Autism and Developmental Disorders, 46, 1737–1747. CrossRefPubMed Shire, S., Gulsrud, A., & Kasari, C. (2016). Increasing responsive parent–child interactions and joint engagement: Comparing the influence of parent-mediated intervention and parent psychoeducation. Journal of Autism and Developmental Disorders, 46, 1737–1747. CrossRefPubMed
go back to reference Shonkoff, J. P., & Phillips, D. A. (Eds.). (2000). From neurons to neighborhoods: The science of early childhood development. Washington, DC: National Academy Press. Shonkoff, J. P., & Phillips, D. A. (Eds.). (2000). From neurons to neighborhoods: The science of early childhood development. Washington, DC: National Academy Press.
go back to reference Shrout, P. E., & Fleiss, J. L. (1979). Interclass correlation: Uses in assessing rater reliability. Psychological Bulletin, 2, 420–428. Shrout, P. E., & Fleiss, J. L. (1979). Interclass correlation: Uses in assessing rater reliability. Psychological Bulletin, 2, 420–428.
go back to reference Singer, J. D., & Willett, J. B. (2003). Applied longitudinal data analysis: Modeling change and event occurrence. New York, NY: Oxford University Press. Singer, J. D., & Willett, J. B. (2003). Applied longitudinal data analysis: Modeling change and event occurrence. New York, NY: Oxford University Press.
go back to reference Sobesky, W. E., Hull, C. E., & Hagerman, R. J. (1994). Symptoms of schizotypal personality disorder in fragile X women. Journal of the American Academy of Child and Adolescent Psychiatry, 33(2), 247–255. CrossRefPubMed Sobesky, W. E., Hull, C. E., & Hagerman, R. J. (1994). Symptoms of schizotypal personality disorder in fragile X women. Journal of the American Academy of Child and Adolescent Psychiatry, 33(2), 247–255. CrossRefPubMed
go back to reference Sparrow, S. S., Balla, D. A., & Cicchetti, D. (1984). Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service. Sparrow, S. S., Balla, D. A., & Cicchetti, D. (1984). Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service.
go back to reference Sparrow, S. S., Cicchetti, D., & Balla, D. A. (2005). Vineland-II: Vineland Adaptive Behavior Scales, (2nd Edition). Minneapolis, MN: Pearson. Sparrow, S. S., Cicchetti, D., & Balla, D. A. (2005). Vineland-II: Vineland Adaptive Behavior Scales, (2nd Edition). Minneapolis, MN: Pearson.
go back to reference Spiker, D., Boyce, G. C., & Boyce, L. K. (2002). Parent–child interactions when young children have disabilities. International Review of Research in Mental Retardation, 25, 35–70. CrossRef Spiker, D., Boyce, G. C., & Boyce, L. K. (2002). Parent–child interactions when young children have disabilities. International Review of Research in Mental Retardation, 25, 35–70. CrossRef
go back to reference Thompson, N. M., Rogeness, G. A., McClure, E., Clayton, R., & Johnson, C. (1996). Influence of depression on cognitive functioning in fragile X females. Psychiatry Research, 64(2), 97–104. CrossRefPubMed Thompson, N. M., Rogeness, G. A., McClure, E., Clayton, R., & Johnson, C. (1996). Influence of depression on cognitive functioning in fragile X females. Psychiatry Research, 64(2), 97–104. CrossRefPubMed
go back to reference Verkerk, A. J. M. H., Pieretti, M., Sutcliffe, J. S., Fu, Y.-H., Kuhl, D. P. A., Pizzuti, A., et al. (1991). Identification of a gene (FMR-1) containing a CGG repeat coincident with a breakpoint cluster region exhibiting length variation in fragile X syndrome. Cell, 65(5), 905–914. doi: 10.​1016/​0092-8674(91)90397-H. CrossRefPubMed Verkerk, A. J. M. H., Pieretti, M., Sutcliffe, J. S., Fu, Y.-H., Kuhl, D. P. A., Pizzuti, A., et al. (1991). Identification of a gene (FMR-1) containing a CGG repeat coincident with a breakpoint cluster region exhibiting length variation in fragile X syndrome. Cell, 65(5), 905–914. doi: 10.​1016/​0092-8674(91)90397-H. CrossRefPubMed
go back to reference Warren, S. F., & Brady, N. C. (2007). The role of maternal responsivity in the development of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 330–338. doi: 10.​100/​mrdd.​20177. CrossRefPubMed Warren, S. F., & Brady, N. C. (2007). The role of maternal responsivity in the development of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 330–338. doi: 10.​100/​mrdd.​20177. CrossRefPubMed
go back to reference Wechsler, D. (1997). Wechsler Adult Intelligence Scale Administration and Scoring Manual, (3rd Edition). San Antonio, TX: Psychological Corporation. Wechsler, D. (1997). Wechsler Adult Intelligence Scale Administration and Scoring Manual, (3rd Edition). San Antonio, TX: Psychological Corporation.
Metagegevens
Titel
The Longitudinal Effects of Parenting on Adaptive Behavior in Children with Fragile X Syndrome
Auteurs
Steven F. Warren
Nancy Brady
Kandace K. Fleming
Laura J. Hahn
Publicatiedatum
10-01-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 3/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-016-2999-7

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