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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.
By
WebMD Feature
Reviewed by Matthew Hoffman, MD

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.

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 career.

"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 typically.

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.

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