Autism and Family Relationships
Having a child with autism affects the entire family. Here's how to anticipate 5 common family issues, cope with them, and thrive.
Alison Singer's days became a blur eight years ago when her daughter Jodie,
now nearly 11, was diagnosed with autism.
Singer left the workforce temporarily and focused on her daughter. "I set up
the home program -- 40 hours a week of applied behavioral analysis therapy,"
says Singer, referring to a common autism
treatment. There were appointments for evaluations to schedule -- and then
get to -- and numerous decisions to make. "Your life becomes dominated by
autism," Singer remembers. "I used to call myself the CEO of Jodie, Inc."
Fast forward eight years. Singer -- who with her husband Dan also has an
8-and-a-half-year-old daughter, Lauren -- is now the executive vice president
of Autism Speaks, an advocacy group. She knows that autism and family
relationships are intertwined. Setting up the appointments and therapy sessions
is just part of the story for a family affected by autism. A diagnosis of
autism changes family relationships and dynamics in ways Singer and other
parents could never imagine until it happened to them.
Autism and Family Relationships
Autism has been termed an epidemic. It's "actually a family epidemic,"
according to Cecelia McCarton, MD, founder of The McCarton School and the
McCarton Center for Developmental Pediatrics in New York. "The ripple effect
that happens when you have an autistic child," she says, "is astronomical in
terms of family dynamics."
Parents, siblings, grandparents, and extended family members are all
affected by autism, McCarton says. And while the dynamics vary from family to
family, experts -- both health professionals and parents of children with
autism -- tell WebMD that five main areas of family functioning are commonly
affected. The degree of challenge may vary depending on the severity of the
autism, but the autism-related issues that families have to deal with are
similar -- whether a child is severely affected or has high-functioning
Autism and the Family: Issue 1 -- Adjusting Parental Expectations
"After a diagnosis of autism, parents' expectations change," says Patricia
Wright, PhD, MPH. Wright is national director of autism services for Easter
Seals. Experts says that some of these expectations may not have even been
verbalized, although they were in the back of parents' minds. For instance,
most parents naturally expect their child to go to college or to pursue a
"It's not what you thought your life would be like," says Kathleen Patrick.
Patrick is vice president of services for Easter Seals New Jersey. Her son,
Adam Martin, 11, has an autism
spectrum disorder known as pervasive developmental disorder -- not
otherwise specified (PDD-NOS). Her other son, Mark Martin, 9, is developing
Patrick took solace from an essay titled "Welcome to Holland" written by
Emily Perl Kingsley, a mother of a disabled child. Kingsley compares the
experience of finding out a child is disabled to planning a vacation trip to
Italy, then finding out you're actually going to Holland.
It's not horrible, just different, Kingsley writes. She suggests that if you
spend your life mourning the lost trip to Italy you will never enjoy the
special qualities of Holland. After you're there a bit, she says, you notice
the charm --tulips, windmills, Rembrandts.