Blue Eyes and I met on a group pilgrimage in India. That first meeting, we sat in the hotel lobby and talked for many hours, late into the night. Though our bodies were sitting sedately on couches talking away, I had the sense that our souls were above us, dancing in the delight of their reunion.

This year we celebrated 20 years of marriage. It’s been a great marriage. For a long time we were confused about whether or not to add a child to the mix but, 13 years into our marriage, the Universe made up our minds for us.

Anyone involved in the world of autism has heard the statistic that 80% of all autism marriages fail. It’s the same difficult odds, I might add, when a child dies.

Maybe it’s not actual death, but having an autistic child is like a death. The death of dreams, of plans, of what you thought the parenting journey would be, of what you thought your marriage would be. The death of your life as you knew it.

In many marriages, autism produces a long, slow spiral downward. Truly, I can see why. The isolation of having a kid who cannot cope being with other people, the stress of having to figure out how to deal with autism, the major financial stress of medical and behavioral interventions.

I am fortunate to live in an area that had a support group for parents of young ASD children. Most of us were dealing with the above stresses and the co-occuring problems of autism, as well. Sleep, for example, was a huge issue. There were five core moms in this group, and we discovered that most of us weren’t sleeping with our husbands. For one reason or another — a mom’s fragility sleeping because of stress, a child who wouldn’t sleep through the night without a grownup with him, a parent’s inability to cope with a child’s frequent wakings — long-term sleeping separations were taking place.

This is hard. In my marriage, holding each other before or during sleep is a wonderful, and important, way to connect after a busy day apart. And, of course, when you’re not sleeping in the same bed, sex pretty much flies out the window. There goes another significant connecting point.

If you’re in a marriage and have had a recent autism diagnosis, here is my advice: Get help. Get help, get help, get help.

Part of our autism “benefits package” included eight sessions of marriage counseling. The strain didn’t go away with eight sessions, so we were granted an emergency package of eight more sessions. What a gift this was. All conflict is an effort to birth something new, and during these sessions we worked to birth a new marriage. The counseling sessions were a great start, and it still took us a long time to figure out how to be married in a way that could work with autism.

It’s like this: the chronic stress that raising a child with autism entails affects your marriage at its weakest points. So you either strengthen your weakest points, or you die.

We had to learn how to have fun again. Since we couldn’t have fun within the family (at that time, Joseph was way too challenging to be fun), Blue Eyes and I needed to go off by ourselves. This meant finding someone who could look after an autistic child. For many families, trying to find this person is huge. Few outsiders can deal with autism and the way it presents itself. We ended up hiring one of Joseph’s behavioral-intervention tutors for occasional babysitting. Karen has become a great friend who still looks after Joseph several times a month.

We also needed to nurture our own souls. Joseph was a two-parent project for a long time, but we eventually got to where one parent could go to a yoga class or group meditation while the other held down the home front.

Lastly, we stopped taking it out on each other. We slowly stopped snapping at each other and rolling our eyes at the other’s viewpoint, and learned instead how to support each other — how to be friends sharing this burden instead of struggling individually with it. A burden shared is a burden halved, right?

At this point, we are heaving big exhalations and feeling that autism is not going to be the end of us. We are treasuring each other and enjoying our family. It helps that Joseph has improved so much.

The longer I’m married, the more I realize that marriage is not a destination. It’s a journey. We are not at happily ever after, but we are at happy. After all we’ve been through, happy is a terrific place to be. I am grateful.

Are our souls still dancing in the delight of being together? I think so. All the more because, so far at least, our marriage has made it through the fiery trial of autism.

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