An Autism Mom on Having It All

The debate on mothers "having it all" continues. This is just one more example of a controversy where, as the mother of a son with autism, I feel I must watch from the sidelines.
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The debate on mothers "having it all" continues. This is just one more example of a controversy where, as the mother of a son with autism, I feel I must watch from the sidelines.

To mothers raising children with special needs, especially those who are single moms like me, it seems to be a superfluous argument at best, and a ridiculous one at worst.

When your child has serious difficulties in life, you are forced to confront reality in ways that others aren't. Some women talk about "the glass ceiling" holding them back, and I am sure it exists. But I'm fighting the autism ceiling, and from where I sit (usually in a waiting room, working on my laptop), it seems obvious that I will never be compensated financially or professionally for the thousands of hours I've spent over the last decade taking my son to treatments that have helped him communicate better. Would I be in a different and better place in my career if I had not taken this time to do what was best for him? Yes, certainly. Am I shedding tears over it? No. First of all, I don't have time. Secondly, that's how it goes. I feel lucky every day that my son gets therapy that helps him (and that he enjoys). Not every parent of a child with autism can say that. I've invested in him rather than in my career. The rewards I've gotten are that I've seen his life become easier. He can express himself much better now, and learn more.

From my vantage point in the waiting room, it seems obvious that those who take time off from their careers, for any reason, will not advance as quickly as those who don't. Is that ideal? No, but it's not an ideal world. If it were, there would be more effective treatments for autism available by now, and they would be cheaper. There would be government-subsidized respite care for all families who need it. The numbers of children diagnosed with autism would be going down, not up. And parents would not have to spend every remaining ounce of energy and sanity fighting bureaucracies to get appropriate care for their children.

Welcome to our world. While most families don't have to cope with autism, every human being over 6 should know that, as Joan Didion put it so memorably in her essay, "On Self-Respect" from the collection, Slouching Towards Bethlehem, "...everything worth having has its price." She begins this essay with a rather unflattering portrait of herself as a "humorless nineteen-year-old" who is devastated when she fails to make it into Phi Beta Kappa. "This failure could scarcely have been more predictable or less ambiguous (I simply did not have the grades)," she writes. The problem, as she sees it, is that she had pinned her self-respect to this one accomplishment. Success in the work arena is often as narrowly defined as getting into Phi Beta Kappa, and the requirements as clear: Spending long hours at work, attending meetings and seminars and generally doing whatever management requires.

Mothers today know they have the option, in almost all cases, of returning to work after they have children. Is there a magic guarantee that in a competitive, capitalist environment, spending more time with your family and fewer hours at work will not affect your career? How can there be? If you want to be an Olympic athlete, practicing fewer hours will affect your chances of winning a gold medal. The problem, to put it in Didion's terms, is that many women pin their self-respect to both a high level of workplace success and being a hands-on parent. The trade-off is not as stark as it once was, but there is still a trade-off. Should fathers face an equally tough dilemma? They do if they want to be home every day at 5:30 p.m.

I recently published a novel, If I Could Tell You, about four mothers raising children with autism. I deliberately included characters with very different careers and levels of ambition, to demonstrate how all parents of children with autism find their work lives interrupted. We parents of children on the autism spectrum love our careers just as much as any parents do. But we no longer think about having it all. Instead, we hope to have something, mainly the great joy and satisfaction of helping our children make progress. We know it's not a perfect world, but it's the only world we've got. We understand the trade-off we are making, and, to use Didion's term, our self-respect enables to savor the rewards of that tradeoff.

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