ó Kristina Rhodes loves helping families with autistic
children. But she may have to cut back her hours as an
early-intervention therapist because her own autistic son,
Erik, 10, isnít thriving in school.
a familiar situation for Rhodes, who recalls how she couldnít
work at all when her son was younger. "I basically lost
income until he went to kindergarten," she said.
disorder continues to drain her familyís finances. "We
canít buy a house that we necessarily want to be in,"
financial burden of caring for a child with autism was
underscored recently in a study published in JAMA Pediatrics.
The average lifetime cost of supporting someone with autism in
the United States is $ 1.4 million, the study found. For those
with autism and an intellectual disability or cognitive
impairment, the expense rises to $ 2.4 million.
cost is just a number, but itís a big number," said
David Mandell, the studyís principal investigator and
director of the Center for Mental Health Policy and Services
Research at the University of Pennsylvania.
studies community care and services for those with autism,
which affects about one in 68 children in the United States.
People with autism have difficulty with social interaction and
communicating with others and often display repetitive
behavior, such as lining up objects.
study claims to be the most comprehensive assessment of costs
to date. Estimates from the last 10 years were lower but far
less accurate, Mandell said, but he and his colleagues had to
use them as a basis.
arenít data to capture all these costs. We were left
extrapolating from a small number of studies that exist,"
Rhodeses know, the study identified the loss of parental
income as a major contributor to costs. While one parent stays
home from work, medical and therapy costs continue to add up.
very challenging. One parent is often dropping out of the
workplace right when these out-of-pocket expenses are starting
to hit," Mandell said.
Bellamy, CEO of the support group West Philadelphia Parents of
Autistic Children, has seen parents undergo these struggles.
know thereís a big gap in the services they need, and they
canít afford them," she said. "Itís a
son Kareem, 16, has autism, and her group is working to
provide after-school programs and a summer camp for autistic
autistic teenagers enter adulthood, they often have difficulty
finding jobs, leading to their own lost income. Also, costly
accommodations such as group homes are often recommended for
autistic adults, but may be needed only for the most severe
cases. This generalized approach represents a failure of
society to provide other options, Mandell said.
study, funded by the advocacy group Autism Speaks and the
Steve Shirley Foundation, also compared costs between the U.
S. and the United Kingdom. Total lifespan costs were similar
between the two countries despite differences in health
systems. But the breakdown of costs differed: The U.S. tends
to spend more on medical services while the U.K. invests more
was surprising to see that the costs were so similar between
the countries," Mandell said.
this study will lead to more comprehensive care, including
better after-school programs and workplaces that are more
flexible for parents.
need more efficient and more effective care that is more
consonant with the values of our society," he said.
Rhodes is academically advanced for his age, but he struggles
with anxiety. Being in gym class or sitting in a crowded
cafeteria is challenging. He often misses school because of
the stress, so his mother is looking into other schooling
options, such as a charter school or a Web-based cyber school.
a mind for science and is passionate about oceanography, but
everyday skills, such as opening a plastic bag or tying his
shoes, are difficult. So "weíre trying to find a school
that is the best fit for him," his mother said.
a good insurance plan has kept medical and therapy expenses
from becoming too burdensome, reducing her hours would mean
serious costs for Rhodes. Also, getting access to new
research- based care that Erik needs, such as reflex therapy
and therapeutic listening, can be expensive. Families are
often left figuring out alternative options and sharing ideas.
a community within ourselves," said Bellamy.