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.
Autism and the Family: Issue 2 -- Worrying About the Siblings of Autistic Children
Whether the child with autism is the first-born, in the middle, or the baby, parents often worry about the effect that dealing with the autism -- and the time commitment it involves -- will have on the other children. "I think most parents bend over backward so it doesn't affect the other children," says McCarton.
In a recent study published in the Journal of Autism and Developmental Disorders, researchers compared siblings of autistic children with siblings of non-disabled children and found those with the autistic sibling were actually better adjusted psychosocially and emotionally. They did find, however, that it's more difficult for the non-disabled child to cope with the autistic sibling if multiple risk factors such as low income are present.
Exactly why the siblings of autistic children scored better isn't known. Wright says they may have a higher level of maturity from observing and being involved in the care of a child with autism. "The message is," Wright tells WebMD, "lots of siblings are doing OK."
Still, it's a good idea to be sure the other children get one-on-one time with each parent, McCarton says. Many parents divide up the children. For example, the mother may take over a behavioral therapy session for the child with autism one day, and the father will take the other children out for a movie. Then they'll switch roles the next time.
In most instances, McCarton finds, the siblings really do love their autistic brother or sister. "They can sometimes get siblings to do things [that others cannot]," McCarton says. For instance, a sibling who has observed a therapist telling the child with autism, "Look at me when you talk," may pick up this request and ask on his own when the family is interacting, and the child will respond.
Of course, there can be some rough going. For instance, McCarton says there are times when the siblings don't like the child with autism. It can occur at life transitions involving other children, such as a first sleepover or a first date. The sibling may worry about what the friend will think of his brother or sister who has autism. Or the child may be afraid the other kids will make fun of the brother or sister with autism.
Parents should know that it is a "tremendous adjustment" for a sibling to realize a brother or a sister has autism, McCarton says. "It's important that siblings speak about how they feel."
Susan Senator, the Boston-based author of Making Peace with Autism, says that siblings may also form a very close bond with each other, helping one another cope with the fact that their brother or sister has autism. Senator's son Nat, now 18, has autism. Her sons Max, 16, and Ben, 10, have a close bond. "They seem to really support each other," she says, even though there is the six-year age difference. "The kids have to figure out how they are going to relate to their sibling with autism," Senator says, "and that changes over the years."
The siblings may have different reactions, as Senator knows. "My middle son is mellow and accepting. The little one said Nat ruined his life,'' she says. "I have to have hope it will change."
Autism and the Family: Issue 3 -- Tending to the Marriage
Dealing with a diagnosis of autism puts a strain on any marriage. Men and women tend to react to the news differently, according to McCarton, and that can add to the stress.
"Women are profoundly sad. But they hit the ground running," McCarton says, referring to the typical reaction women have on hearing the diagnosis. "They mobilize. Men often retreat into work." Also, men often question the diagnosis or deny it.
"When the couple reacts differently," McCarton says, "that's the first crack in the marriage. There is no one with whom [the woman] can share her grief.'' She says not all couples follow this pattern, of course, but she has observed many that do.
The solution is to make time for each other, which is more easily said than done. Families are already time-strapped dealing with behavioral therapists, many doctor appointments, and above-average financial stress. Even so, experts say, couples have to feed the relationship -- even if it's watching a video together or talking after the kids are asleep.
It's also crucial to steal solo time just for yourself, McCarton tells parents. She asks them: "What were the things you loved before?" When parents protest they have no time or money to indulge themselves, she says: "It doesn't have to be expensive or take up hours of the day. It can be going to Starbucks and having a cup of coffee by yourself for half an hour. It can be taking a shower for 15 minutes."
It's also important to talk about the autism and what your goals are for your child. Susan Senator says her husband, Ned Batchelder, seemed at first to let her handle everything when their son Nat was diagnosed with autism at age 3. Then she started going to a support group and bringing home stories of others from the group. "That was a bridge," she says. "He realized he wasn't alone, and that got him to talk about his feelings."
Autism and the Family: Issue 4 -- Holding Onto Family Traditions
Family rituals such as vacations, taken for granted before, can become challenging or seemingly impossible for families with an autistic child.
Many people deal with those challenges by opting out, according McCarton, which, she says, is a mistake. She says it's important to think through what can be done to make the child with autism -- who can become extremely upset by changes in routine that come with vacations -- more comfortable on a trip. A loving extended family, for instance, may rent a big beach house together, where everyone is free to pursue their Interests.
Senator and her husband take their three boys to Cape Cod every year, an easy drive from their home. "They became familiar with it,'' she says. "You only have a few choices of what to do, and a routine was established. My parents have a house near where we rent, and they can babysit."
They've returned year after year. Gradually, they figured out what activities make Nat happy and content. "He likes to fill up a bucket and pour it out," she says. "He likes the ocean side, not the bay side, because he likes the waves crashing. He boogie boarded, and his brothers could do it with him."
Other trips, especially those involving airplanes, have not been as easy, Senator tells WebMD. "When we went to Colorado, we went on the Internet, and got lots of pictures about security [showing] how he would have to take off his shoes so he would know what to expect."
How to have a restful vacation? Senator says, "The key is to get down on paper what the issues are, the hardest things, and then try to think of a solution for each." For Nat on the Cape Cod vacations, she says, it was boredom on the beach -- until they observed what activities interested him and focused on those.
Going to big family parties can be stressful, says Kathleen Patrick. "When we go to a family event, we go early so he can get his bearings," she says. "It's easier for him to settle in when the crowd is not already there." Patrick and her husband Steve often decide to take two cars in case the event becomes too overwhelming for Adam.
When making restaurant reservations for her husband Dan and two daughters, Singer will ask for a booth, knowing that her daughter Jodie "bounces around" when sitting in a restaurant. "I ask for the booth against the wall," she says. That helps Jodie be free to bounce without disturbing other diners.
Autism and the Family: Issue 5 -- Maintaining a Social Life
Keeping up outside friendships -- as a couple and as a family -- is healthy. But getting through picnics and parties can be difficult with an autistic child. Many children with autism have trouble with social interactions and changes in routine. Still, parents find a way to cope.
Kathleen Patrick sometimes asks friends who invite them for a party if they have a spare bedroom with a television to which her son can retreat if the crowd gets to be too much.
With more awareness about autism and what it is, parents may expect friends and acquaintances to be accommodating to their autistic child's needs. Maybe not, says Wright. "People are more aware, but I am not sure they know what to do or how to support'' families dealing with it, she says.
Even with the awareness, people can stare when a child with autism displays what they consider odd behavior. "You get to the point where you get a thick skin," Senator says. "You don't care if people are staring at your kid."
You learn, she says, to take control -- even if you don't feel so in control. "Last summer, Nat was jumping up and down on the beach," she says. "People were staring. I turned around and said [to them,] 'Everything is under control.' People backed off." Just saying that everything was under control made her feel better, Senator says now.
Letting go of that image of what the "ideal" family is can help, says Senator, who often speaks on the topic of living with autism to autism organizations and others. "Families can be as eccentric as they need to be," she says. "Some aspects of autism appear to be bizarre."
So, she says: "Let yourself go with that and not worry about being a Hallmark card. Nat has taught me to be less uptight about those kinds of things. You can find enjoyment in odd places with these kids."