A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability

• Published in: Research in developmental disabilities Vol. 35; no. 7; pp. 1518 - 1527
• Main Authors: Ouyang, Lijing, Grosse, Scott D., Riley, Catharine, Bolen, Julie, Bishop, Ellen, Raspa, Melissa, Bailey, Donald B.
• Format: Journal Article
• Language: English
• Published: Amsterdam Elsevier Ltd 01.07.2014; Elsevier
• Subjects: Activities of Daily Living - classification; Activities of Daily Living - psychology; Adolescent; Adult and adolescent clinical studies; Anxiety Disorders - diagnosis; Anxiety Disorders - psychology; Aptitude; Autism spectrum disorders; Autistic spectrum disorders; Biological and medical sciences; Burden; Caregiver impacts; Caregivers - psychology; Child; Child clinical studies; Child Development Disorders, Pervasive - diagnosis; Child Development Disorders, Pervasive - psychology; Child, Preschool; Children; Chromosome fragility (bloom syndrome, ataxia telangiectasia, fanconi anemia, x-linked mental retardation...); Comorbidity; Cost of Illness; Developmental disorders; Employment; Female; Fragile X syndrome; Fragile X Syndrome - diagnosis; Fragile X Syndrome - psychology; Health Surveys; Humans; Income; Infantile autism; Intellectual deficiency; Intellectual disability; Intellectual Disability - diagnosis; Intellectual Disability - psychology; Irritable Mood; Male; Medical genetics; Medical sciences; Parents; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Seizures - diagnosis; Seizures - psychology; Autism spectrum disorders; Caregiver impacts; Intellectual disability; Fragile X syndrome; Social environment; Handicap; Human; Chromosome fragility; Caregiver; Developmental disorder; Mental retardation; Autism spectrum disorder; Autism; Pervasive developmental disorder; Employment; Intellectual deficiency; Family environment; Comparative study
• ISSN: 0891-4222; 1873-3379; 1873-3379
• DOI: 10.1016/j.ridd.2014.04.009

•A sample of children with FXS were matched with children with autism spectrum disorder (ASD) only, or intellectual disabilities (ID) only, or ASD and ID.•Higher percentage of caregivers of FXS reported negative financial and employment impacts than caregivers of ASD or ID only.•Caregivers of FXS reported similar financial and employment impacts as caregivers of both ASD and ID.•Co-occurring anxiety or seizures, limits in overall ability, and more irritability were associated with negative caregiver impacts. This study compares the family financial and employment impacts of having a child with fragile X syndrome (FXS), autism spectrum disorder (ASD), or intellectual disabilities (ID). Data from a 2011 national survey of families of children with FXS were matched with data from the National Survey of Children with Special Health Care Needs 2009–2010 to form four analytic groups: children with FXS (n=189), children with special health care needs with ASD only (n=185), ID only (n=177), or both ASD and ID (n=178). Comparable percentages of parents of children with FXS (60%) and parents of children with both ASD and ID (52%) reported that their families experienced a financial burden as a result of the condition, both of which were higher than the percentages of parents of children with ASD only (39%) or ID only (29%). Comparable percentages of parents of children with FXS (40%) and parents of children with both ASD and ID (46%) reported quitting employment because of the condition, both of which were higher than the percentages of parents of children with ID only (25%) or ASD only (25%). In multivariate analyses controlling for co-occurring conditions and functional difficulties and stratified by age, adjusted odds ratios for the FXS group aged 12–17 years were significantly elevated for financial burden (2.73, 95% CI 1.29–5.77), quitting employment (2.58, 95% CI 1.18–5.65) and reduced hours of work (4.34, 95% CI 2.08–9.06) relative to children with ASD only. Among children aged 5–11 years, the adjusted odds ratios for the FXS group were elevated but statistically insignificant for financial burden (1.63, 95% CI 0.85–3.14) and reducing hours of work (1.34, 95% CI 0.68–2.63) relative to children with ASD only. Regardless of condition, co-occurring anxiety or seizures, limits in thinking, reasoning, or learning ability, and more irritability were significantly associated with more caregiver financial and employment impacts. Proper management of anxiety or seizures and functional difficulties of children with FXS or other developmental disabilities may be important in alleviating adverse family caregiver impacts.