Divorce & autism

Divorce in the autism community, Spectrum Magazine. Full copy follows the jpg of the opener. This was particularly satisfying because I organized and designed a survey questionnaire to help debunk what was previously considered common knowledge in the autism community. I also enjoy the 'Have fun; get drunk' pull quote. Copy appears as it was sent to the editor.

HED: Til Autism Do We Part

DEK: After all the doctors and therapy appointments, parents struggle to keep their marriage intact.

by 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.

SUB: 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."

SUB: 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 more 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."

Every couple experiences changes and transitions in life, whether it's moving, changing jobs, coping with financial issues. How couples work through those "is important for any partnership," Naseef explains. "Do you support each other? Does the relationship thrive while dealing with problems? How good do you work together? Do you feel alone?" When the problem is related to the child, the stress amplifies the differences in the ways each partner approaches the issue.

Women tend to delve into researching doctors, treatments and therapies. They become therapy moms instead of soccer moms, says Naseef. Men, on the other hand, have a problem with things they can't fix. Men often throw themselves into work and making money. "That's a typical division of labor," Naseef explains. "You start to live separate lives. How do you respond? Can you take care of your own relationship or are you overwhelmed and drowning in it?"

"We're happy in our (respective) positions. Neither one of us wants the other person's place," Lombardi says. Her husband doesn't like dealing with the doctors. If he had to deal with them on a regular basis, "he would probably punch them out," she laughs. "He doesn't like not having answers--the grey area."

Naseef relates an extreme case of a couple who genuinely loved each other but were struggling with the growing wedge between them. "The mother couldn't get off the computer," Naseef says. "Here's what we came up with: Dad took over researching one area." Their son was sensitive to sound, so the father did the research, set up their home so the house wouldn't echo and talked to teachers. "He got active within a range that he could handle. He took some of the load off his wife and felt he was making an impact. The mother was able to let go of the obsession a little bit and could turn the computer off at night."

The second gulf between parents is also gender-related: the process of grieving. "Men and women grieve differently," Naseef explains. "Women get release talking about their feelings, whereas men get frustrated. They're on different time tables." The grieving process, he says, takes longer for men. Because men tend to grieve on the inside, wives only see the stoic outside. They may not see the husband crying in the car on the way to work.

Naseef suggests diffusing the man's instinct to be Mr. Fix-it. "Diffuse that from the beginning. Tell your husband, 'I just want you to listen. I don't need you to do anything or fix anything. I just need you to listen." He also recommends--for both partners--changing up the discourse every so often. If you always talk about the child's progress, talk about the frustrations one day. The other person, he says, "will open up in a different way."

SUB: Date Night

Lombardi remembers losing the romance in her relationship a few years ago. She once woke up to her son, Joey, covering the kitchen with peanut butter. Every tile. Every cabinet. "Getting peanut butter out of linoleum is really fun, let me tell ya," she chuckles. She and her husband go out two Saturdays a month to reconnect. Sometimes it's to go to a restaurant. Sometimes it's pizza. "I get to put on lipstick; he gets to put on a nice shirt. There are no other distractions, and we just talk. We force that time together. It's really wonderful," she explains.

Stephanie Miller and her husband also do 'date night.' It helps her remember why they got together in the first place. "You're best friends before you're parents," says the Maryland mother of two girls. Her advice is pithy: Have fun; get drunk. She and her husband complement each other, which makes up for her lack of a support system. "My mom used to come over once a week before there were any issues. Now she comes over maybe once a month. She lives 10 minutes away." She has one friend left. "The last thing you want to do is become best friends with a parent of a child with autism because you spend all your time talking about autism."

Cleveland's Lori Strozniak spends two Saturdays a month with her husband. "If we didn't do that, I'd be having a very different conversation with you right now."

Unlocking Autism President Shelley Hendrix-Reynolds suggests that the 'date conversation' be just that. "When you go to dinner, don't come up with a battleplan on how you're going to change the world for autism. Talk about Angelina Jolie and the latest movies." She emphasizes the importance of communication between partners. When her son Liam was diagnosed, Hendrix-Reynolds threw everything into trying to rehabilitate him. She thought her husband, Aidan, was on the same page. "After a while, people didn't want to hang out with me because they didn't want to talk about all these statistics and facts about autism," she says. But her friends wanted to talk about Sex and the City. Aidan, meanwhile, couldn't let go of the dream of a perfect family. Communication, Hendrix-Reynolds now realizes, is more than, 'Here's what Jimmy did in therapy today.' You have to connect on an emotional intimate level." Otherwise, she adds, couples may become married to autism instead of each other.

Some parents have trouble reconciling their own needs while taking care of their children. "Moms feel guilty about getting a $25 haircut because that could be half of a speech therapy session. You can't do that. Get your hair cut and take care of yourself," Hendrix-Reynolds says.

"You can't learn everything," Naseef advises. "You need to collect professionals you trust to guide you through this. Your kid still needs you as mom and dad. Find some balance, some rhythm in your life." He suggests looking at the family as a mobile. If one member has a problem, it throws the mobile out of balance. Worse still, it can drive one or both parents into isolation.

"Kids need their parents to be okay," Naseef reminds. "If you're running yourself ragged and you're irritable and stressed, you're not necessarily going to be the best parent you can be."

SIDEBAR

Tips for a healthy relationship

• Compromise. When it comes to which therapies to choose, find families with children like yours. "Horse trade," says Christina Adams. "I'm willing to do x if you're willing to do y." The one who does the research, she adds, should have the priority.
• Go to a marriage counselor. "It's too life changing" not to go, says Adams. She recommends going alone if your spouse won't come.
• Look long-term. When it comes to financial matters, take a long-term picture. Work up a yearly budget. "Get your own finances in order first because you will never catch up," says one anonymous parent, who wished she and her husband did that before their eventual divorce.
• Have interests other than autism. "All work and no play is not a good equation," says Dr. Robert Naseef. For your child to be healthy, you have to be healthy.
• Go on dates. Trade babysitting duties with other couples if you have to. Find a couple of hours for just the two of you. "Doing this alone is a lot harder than doing this together," says Shelley Hendrix-Reynolds.
• Communicate. Don't let autism be the first thing you talk about when you see each other. Connect emotionally before getting into the nitty-gritty of everyday life.
• Have fun. "A lot of people forget who they are," says Stephanie Miller. "When you forget who you are, you don't like anybody else. You have to laugh."