Til Autism Do We Part

Dave Gerardi

Phyllis Lombardi and her husband, Nick, can’t wait for vacation with their two pre-teen sons, Nicholas and Joey. Joey was diagnosed with autism at 22 months, but he’s fine today. He has traveled on planes before and never had a problem. At JFK, the family moves through baggage check and security. The plane is ready to board a few minutes later, but Joey is not. After some filibustering, the captain comes out and offers his captain’s hat as an enticement. It’s a no go. The Lombardis’ luggage flies to Tampa without them.

Take the stress of a normal marriage—money, lack of time, crazy schedules, kids—then add autism to the mix. “Having a child with autism is like an earthquake opening a big fracture under your feet: It shakes up the landscape. Nothing is the same,” says Christina Adams, author of A Real Boy: A True Story of Autism, Early Intervention and Recovery and mother whose son, Jonah, was diagnosed at 3. When even a vacation is a hassle, like what the Lombardis experienced, how are couples supposed to find the time to remember what drew them together in the first place? The stress can shatter relationships, but, contrary to common opinion, solidifies others.

The number of the beast

There’s a number. Sometimes it’s 80. Sometimes 85. When I mention it, people scoff and say it’s closer to 90.

The number is the percentage of parents of autistic children who divorce. It is terrifyingly high. It raises clarion calls to arms. It plants the seed of doubt in even the most stable of marriages.

It is also not true.

“It’s a myth,” says Dr. Robert Naseef, a Philadelphia psychologist and author of the book Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability.

In all the articles Spectrum found which mentioned the high rate of divorce amongst parents of autistic children, no source was ever given. Anecdotal accounts aren’t reliable to begin with, but they often fall back on the oft-quoted 85 to 90 percent rate. They have no source to back it up either.

“I find very educated people asking, ‘Is that true?’” Naseef says. “There is no source. None. It’s irresponsible to keep throwing this number around.” Adams agrees: “I’ve yet to see any sources for that number.”

Furthermore, while the commonly accepted divorce rate hovers between 40 and 50 percent, results of an on-going survey by the National Autism Association put the divorce rate for parents of autistic children well under 40 percent. Spectrum Magazine recently conducted an informal survey of parents with autistic children and found just under 26 percent of approximately 250 responses were divorced.

It’s not all doom and gloom. Many couples make it. Some even say their marriage is stronger because of autism. Vivian Herrero’s youngest of two children was diagnosed at 21 months. “When I feel depressed, my husband steps forward,” she says. “When he feels sad, I give him optimism. If you’re in this together, it will definitely make your marriage stronger.”

Alone together

Jill Boyer had the perfect marriage. Self-described independent workaholics, she and her husband moved to Europe for business in 1995. Her son, Matthew, was born three years later and diagnosed with autism three years after that. In between, they had a second child, Alex, who is PDD-NOS. Boyer’s husband blamed her for not getting the kids’ behavior under control. “Alex would have temper tantrums,” she explains. “Everything would set him off,” including, she adds, the third page of Dr. Seuss’ Green Eggs and Ham. While Boyer kept busy researching autism and painting over the crayon marks on the walls, her husband ignored the problem and concentrated on work. He began coming home late from work…except it wasn’t work at all. Boyer eventually learned about the affair and their marriage ended.

Generally speaking, men and women react to the situation differently. Each partner must change their initial expectations for parenthood, and this can bring to light stark differences in the expectations themselves. “It’s a radically different life than expected,” says Naseef.

Denial can be a problem, and it’s often the dad, says Adams. “A father is socialized to raise a child who’s going to grow up to be successful. When they find that there’s a possibility their child may not grow up in that mode, it hurts. The sooner they can accept the reality, the sooner the family can move forward. Oftentimes, it can take years.”

It’s almost like an Alcoholics Anonymous meeting, says Joanna Frank. It’s not easy for the dads to say, “Yes, my child has autism.” Frank is the founder and executive director of The Resource Connection in Mechanicsville, Va., a non-profit group connecting families with autism-related services. The Resource Connection runs a monthly, faith-based support group. Frank and her staff work on helping couples communicate by establishing personal and family goals. Most of the parents who first visit the support group come alone. It is usually the mom and divorce is often on the horizon. Franks says the husbands get excited about the group once they start showing up. “We come up with a short term objective for each parent. By writing it down, it forces dads and moms to say, ‘okay, what do we need to work on together?’ It gives husbands an opportunity with their wives to problem solve.”

Courtesy of Spectrum Publications

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