Mothers’ perspectives on challenging behaviours in their children with fragile X syndrome

References

• Bailey, D. B., Raspa, M., Bishop, E., & Holiday, D. (2009). No change in the age of diagnosis for fragile X syndrome: Findings from a national parent survey. Pediatrics, 124(2), 527–533. doi: 10.1542/peds.2008-2992
   PubMed Web of Science ®Google Scholar
• Bailey, D. B., Raspa, M., Olmsted, M., & Holiday, D. B. (2008). Co-occurring conditions associated with FMR1 gene variations: Findings from a national parent survey. American Journal of Medical Genetics Part A, 146(16), 2060–2069. doi: 10.1002/ajmg.a.32439
   Web of Science ®Google Scholar
• Brady, N., Warren, S., Fleming, K., Keller, J., & Sterling, A. (2014). Effect of sustained maternal responsivity on later vocabulary development in children with fragile X syndrome. Journal of Speech Language and Hearing Research, 57, 212–226. doi: 10.1044/1092-4388(2013/12-0341)
   PubMed Web of Science ®Google Scholar
• Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A., Sailor, W., … Fox, L. (2002). Positive behavior support. Evolution of an applied science. Journal of Positive Behavior Interventions, 4(1), 4–16. Copyright (2002) by PRO-ED, Inc. Adapted with permission. doi: 10.1177/109830070200400102
   Web of Science ®Google Scholar
• Christensen, D. L., Baio, J., Braun, K. V., Bilder, D., Charles, J., Constantino, J. N., … Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years – autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report Surveillance Summaries, 65(3), 1–23.
   PubMed Web of Science ®Google Scholar
• Crawford, D. C., Acuna, J. M., & Sherman, S. L. (2001). FMR1 and the fragile X syndrome: Human genome epidemiology review. Genetics in Medicine, 3, 359–371. doi: 10.1097/00125817-200109000-00006
   PubMed Web of Science ®Google Scholar
• Demark, J. L., Feldman, M. A., & Holden, J. J. A. (2003). Behavioral relationship between autism and fragile X syndrome. American Journal on Mental Retardation, 108(5), 314–326. doi:10.1352/0895-8017(2003)108<314:BRBAAF>2.0.CO;2
   PubMedGoogle Scholar
• Duy, P. Q., & Budimirovic, D. B. (2017). Fragile X syndrome: Lessons learned from the most translated neurodevelopmental disorder in clinical trials. Translational Neuroscience, 8(1), 7–8. doi: 10.1515/tnsci-2017-0002
   PubMed Web of Science ®Google Scholar
• Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134, e454–e463. doi: 10.1542/peds.2013-3164
   PubMed Web of Science ®Google Scholar
• Eisenhower, A., Baker, B., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49(9), 657–671. doi: 10.1111/j.1365-2788.2005.00699.x
   PubMed Web of Science ®Google Scholar
• Emerson, E., Kierman, C., Alborz, A., Reeves, D., Mason, H., Swarbrick, R., … Hatton, C. (2001). The prevalence of challenging behaviors: A total population study. Research in Developmental Disabilities, 22(1), 77–93. doi: 10.1016/S0891-4222(00)00061-5
   PubMed Web of Science ®Google Scholar
• Fernandez-Carvajal, I., Posadas, B. L., Pan, R., Raske, C., Hagerman, P. J., & Tassone, F. (2009). Expansion of an FMR1 grey-zone allele to a full mutation in two generations. The Journal of Molecular Diagnostics, 11(4), 306–310. doi: 10.2353/jmoldx.2009.080174
   PubMed Web of Science ®Google Scholar
• Gibbs, G. R. (2008). Analyzing qualitative data. London: Sage.
   Google Scholar
• Hastings, R. (2002). Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual and Developmental Disability, 27, 149–160. doi: 10.1080/1366825021000008657
   Web of Science ®Google Scholar
• Hatton, D. D., Hooper, S. R., Bailey, D. B., Skinner, M. L., Sullivan, K. M., & Wheeler, A. (2002). Problem behavior in boys with fragile X syndrome. American Journal of Medical Genetics Part A, 108(2), 105–116. doi: 10.1002/ajmg.10216
   PubMed Web of Science ®Google Scholar
• Hessl, D., Dyer-Friedman, J., Glaser, B., Wisbeck, J., Barajas, G., Taylor, A., & Reiss, A. (2001). The influence of environmental and genetic factors on behavior problems and autistic symptoms in boys and girls with fragile X syndrome. Pediatrics, 108(5), e88. doi: 10.1542/peds.108.5.e88
   PubMed Web of Science ®Google Scholar
• Hessl, D., Tassone, F., Cordeiro, L., Koldewyn, K., McCormick, C., Green, C., … Hagerman, R. (2008). Brief report: Aggression and stereotypic behavior in males with fragile X syndrome – moderating secondary genes in a “single gene” disorder. Journal of Autism and Developmental Disorders, 38, 184–189. doi: 10.1007/s10803-007-0365-5
   PubMed Web of Science ®Google Scholar
• Jessor, R. (1982). Problem behavior and developmental transition in adolescence. Journal of School Health, 52(5), 295–300. doi: 10.1111/j.1746-1561.1982.tb04626.x
   PubMed Web of Science ®Google Scholar
• Kau, A. S., Tierney, E., Bukelis, I., Stump, M. H., Kates, W. R., Trescher, W. H., & Kaufmann, W. E. (2004). Social behavior profile in young males with fragile X syndrome: Characteristics and specificity. American Journal of Medical Genetics Part A, 126(1), 9–17. doi: 10.1002/ajmg.a.20218
   Web of Science ®Google Scholar
• Kaufmann, W. E., & Reiss, A. L. (1999). Molecular and cellular genetics of fragile X syndrome. American Journal of Medical Genetics Part A, 88(1), 11–24. doi: 10.1002/(SICI)1096-8628(19990205)88:1<11::AID-AJMG3>3.0.CO;2-O
   PubMed Web of Science ®Google Scholar
• Kaufmann, W. E., Cortell, R., Kau, A. S., Bukelis, I., Tierney, E., Gray, R. M., … Stanard, P. (2004). Autism spectrum disorder in fragile X syndrome: Communication, social interaction, and specific behaviors. American Journal of Medical Genetics Part A, 129(3), 225–234.
   Google Scholar
• Kiernan, C., & Kiernan, D. (1994). Challenging behaviour in schools for pupils with severe learning difficulties. Mental Handicap Research, 7(3), 177–201.
   Google Scholar
• Langthorne, P., & McGill, P. (2012). An indirect examination of the function of problem behavior associated with fragile X syndrome and smith-magenis syndrome. Journal of Autism and Developmental Disorders, 42, 201–209. doi: 10.1007/s10803-011-1229-6
   PubMed Web of Science ®Google Scholar
• LeBlanc, L. A., & Gillis, J. M. (2012). Behavioral interventions for children with autism spectrum disorders. Pediatric Clinics of North America, 59(1), 147–164. doi: 10.1016/j.pcl.2011.10.006
   PubMed Web of Science ®Google Scholar
• Maddalena, A., Richards, C. S., McGinniss, M. J., Brothman, A., Desnick, R. J., Grier, R. E., … Watson, M. (2001). Technical standards and guidelines for fragile X: The first of a series of disease-specific supplements to the standards and guidelines for clinical genetics laboratories of the American College of Medical Genetics. Genetics in Medicine, 3(3), 200–205. doi: 10.1097/00125817-200105000-00010
   PubMedGoogle Scholar
• McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: A meta-analytic study. Journal of Intellectual Disability Research, 47(6), 405–416. doi: 10.1046/j.1365-2788.2003.00517.x
   PubMed Web of Science ®Google Scholar
• McDuffie, A., Thurman, A. J., Hagerman, R. J., & Abbeduto, L. (2015). Symptoms of autism in males with fragile X syndrome: A comparison to nonsyndromic ASD using current ADI-R scores. Journal of Autism and Developmental Disorders, 45(7), 1925–1937. doi: 10.1007/s10803-013-2013-6
   PubMed Web of Science ®Google Scholar
• Newman, I., Leader, G., Chen, J. L., & Mannion, A. (2015). An analysis of challenging behavior, comorbid psychopathology, and attention-deficit/hyperactivity disorder in fragile X syndrome. Research in Developmental Disabilities, 38, 7–17. doi: 10.1016/j.ridd.2014.11.003
   PubMed Web of Science ®Google Scholar
• Reeves, S., Kuper, A., & Hodges, B. D. (2008). Qualitative research methodologies: Ethnography. BMJ: British Medical Journal, 337, a1020.
   Web of Science ®Google Scholar
• Rogers, S. J., Wehner, E. A., & Hagerman, R. (2001). The behavioral phenotype in fragile X: Symptoms of autism in very young children with fragile X syndrome, idiopathic autism, and other developmental disorders. Journal of developmental & behavioral pediatrics, 22(6), 409–417. doi: 10.1097/00004703-200112000-00008
   PubMed Web of Science ®Google Scholar
• Roid, G. H., & Miller, L. J. (1997). Leiter International Performance Scale-Revised (Leiter-R) manual. Wood Dale, IL: Stoelting.
   Google Scholar
• Rusch, R., Hall, J., & Griffin, H. (1986). Abuse-provoking characteristics of institutionalized mentally retarded individuals. American Journal of Mental Deficiency, 90(6), 618–624.
   PubMedGoogle Scholar
• Sansone, S. M., Widaman, K. F., Hall, S. S., Reiss, A. L., Lightbody, A., Kaufmann, W. E., … Hessl, D. (2012). Psychometric study of the aberrant behavior checklist in fragile X syndrome and implications for targeted treatment. Journal of Autism and Developmental Disorders, 42(7), 1377–1392. doi: 10.1007/s10803-011-1370-2
   PubMed Web of Science ®Google Scholar
• Schroeder, S. R., Marquis, J. G., Reese, R. M., Richman, D. M., Mayo-Ortega, L., Oyama-Ganiko, R., … Lawrence, L. (2014). Risk factors for self-injury, aggression, and stereotyped behavior among young children at risk for intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 119(4), 351–370. doi: 10.1352/1944-7558-119.4.351
   PubMedGoogle Scholar
• Smith, L., Barker, E., Seltzer, M., Abbeduto, M., & Greenberg, J. (2012). Behavioral phenotype of fragile X syndrome in adolescence and adulthood. American Journal on Intellectual and Developmental Disabilities, 117(1), 1–17. doi: 10.1352/1944-7558-117.1.1
   PubMedGoogle Scholar
• Soke, G. N., Rosenberg, S. A., Hamman, R. F., Fingerlin, T., Robinson, C., Carpenter, L., … DiGuiseppi, C. (2016). Brief report: Prevalence of self-injurious behaviors among children with autism spectrum disorder—a population-based study. Journal of Autism and Developmental Disorders, 46(11), 3607–3614. doi: 10.1007/s10803-016-2879-1
   PubMed Web of Science ®Google Scholar
• Symons, F. J., Byiers, B. J., Raspa, M., Bishop, E., & Bailey Jr, D. B. (2010). Self-injurious behavior and fragile X syndrome: Findings from the national fragile X survey. American Journal on Intellectual and Developmental Disabilities, 115(6), 473–481. doi: 10.1352/1944-7558-115.6.473
   PubMedGoogle Scholar
• Symons, F. J., Clark, R. D., Hatton, D. D., Skinner, M., & Bailey, D. B. (2003). Self-injurious behavior in young boys with fragile X syndrome. American Journal of Medical Genetics Part A, 118(2), 115–121. doi: 10.1002/ajmg.a.10078
   Web of Science ®Google Scholar
• Valdovinos, M. (2007). Brief review of current research in FXS: Implications for treatment with psychotropic medication. Research in Developmental Disabilities, 28, 539–545. doi: 10.1016/j.ridd.2006.09.001
   PubMed Web of Science ®Google Scholar
• Warren, S., Brady, N., Sterling, A., Fleming, K., & Marquis, J. (2010). Maternal responsivity predicts language development in young children with fragile X syndrome. American Journal on Intellectual and Developmental Disabilities, 115, 54–75. doi: 10.1352/1944-7558-115.1.54
   PubMedGoogle Scholar
• Warren, S. F., Brady, N., Fleming, K. K., & Hahn, L. J. (2017). The longitudinal effects of parenting on adaptive behavior in children with fragile X syndrome. Journal of Autism and Developmental Disorders, 47(3), 768–784. doi: 10.1007/s10803-016-2999-7
   PubMed Web of Science ®Google Scholar