A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability.
Kids with both ASD and ID or fragile X cost families twice as much money and jobs as kids with single diagnoses.
01Research in Context
What this study did
The team asked 1,250 U.S. families about money and work. Each family had a child with fragile X, ASD only, ID only, or ASD plus ID.
Parents listed out-of-pocket costs, lost wages, and missed work days. They also noted if the child had seizures, anxiety, or behavior problems.
What they found
Families of kids with fragile X or ASD+ID paid the most and lost the most jobs. Their yearly hit was roughly $6,000 above ASD-only families.
Seizures and anxiety doubled the money pain. The more daily living help the child needed, the bigger the wage loss.
How this fits with other research
McCauley et al. (2018) saw the same pattern in quality-of-life scores: ASD+ID kids scored lower than ID-only peers. Together the two papers show extra ASD features hurt both wallets and well-being.
McCarron et al. (2002) looked at adults with multiple disabilities and also found parents struggling to keep jobs. The studies seem to clash—Lijing shows the worst money loss in early childhood, M shows it in adulthood. The gap closes once you see age: little kids need constant care, adult kids still need help but parents have already left the workforce.
Raz et al. (2013) counted Israeli ASD-only costs years earlier. Their median bill ($4,473) lines up with Lijing’s ASD-only group, giving a cross-country check.
Why it matters
When you see ASD plus ID or fragile X on an intake, expect a squeezed family. Ask about seizures and anxiety—each adds dollars and stress. Link families to waiver funds, respite vouchers, and SSI before they burn vacation days or quit jobs. A five-minute cost screen can save a year of financial fallout.
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02At a glance
03Original abstract
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.
Research in developmental disabilities, 2014 · doi:10.1016/j.ridd.2014.04.009