I was interviewed in the May issue of Working Mother magazine in an article by Jennifer Owens entitled The Quiet Struggle: From heartbreak to hope: moms of kids with special needs. The mothers in the article have special needs kids of varying diagnoses (some with autism) and ages (3 years old; adults). One mother is a corporate executive, another is the editor of The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs (what a title—says it all), another is a classics professor in Jersey City, New Jersey (that would be me). There are suggestions about getting in “me-time,” nurturing your marriage, making connections with other women with special needs kids.

It means a lot to me to say I’m a working mother. My mother and both grandmothers all worked ( my mom worked part-time for some years so she could pick me up from school everyday and shuttle us to various lessons and appointments; my grandmothers—both born in Southern China—worked a number of jobs while each raising five kids). It’s been a bit of a crazy dance to coordinate work, Charlie, and family and married life. Slowly I’ve learned that dust on a windowsill or recyclables that are still in the kitchen and not in the bin are no big deal—stuff that can be done tomorrow, but what about hurrying over beside Charlie when he asks me to write “Jackie white car tape” or sitting down with Jim to reflect about what it means that we’ve stuck together through four states, several jobs, one autism diagnosis, several changes of household, for almost fifteen years?

It was a few months ago that another working mother (with a grown-up son) gave me a very important piece of advice. She’s a top-level official where I work and I suspect I had a slightly nervous grimace on my face as I tried to explain why I could not make another late afternoon meeting, as that’s when I have to be home with Charlie. “Kristina,” she said, “everyone has something. You just don’t know what everyone has.” She was speaking more than kindly, and in earnest; her background is in nursing and I know she’s seen a lot. “So it’s okay,” she added.

Up till then I had found myself frequently, as in always, referring to Charlie or autism to explain why I was dashing out the door, or why a hysterical voice was yelling “come right now” over my cell phone, or why I had to cancel a class before midterms because Charlie was sick. Ever since talking to my colleague I have not. If there’s a meeting at 3pm, I’ve simply said, “I can’t make that. Can we reschedule?” or, “I have to check first. I’ll email back.” And that’s that.

Taking care of Charlie could be a job in itself. Mothers of autistic children speak of wearing many hats:

Mother, father, friend, teacher, helper, caregiver, advocate, protector, defender, student, educator, playmate, actor, chef, sometimes therapist, picker-upper-after, freedom fighter, peacemaker, doctor, detective, listener, nurse, teknopoinos, chauffeur, coach, companion, believer, seeker of justice, fan, parent.

My job—at a small Jesuit college in Jersey City, one of the most diverse cities in the US—has me wearing a couple more. I teach; advise; and co-direct a program. And recently I found out that I had been awarded tenure at my school, Saint Peter’s College.

So does that make me a tenured working mother?

Though I suspect I earned that one long ago.

Are people with autism trapped in their own world? Or are the rest of us just trapped in ours?

asks Tara Parker-Pope on the New York Times, regarding the the Wired magazine article on autism featuring Amanda Baggs and Michelle Dawson.

Parker-Pope asks a chicken and egg kind of question about autism: Is it a disease and a disability? Or is it a difference, a different way of being human? And who decides—autistic persons themselves, “experts” in autism, those who live with autistic persons—or who should decide?

Writes Cory Doctorow on Boing Boing about the Wired magazine article on autism featuring Amanda Baggs and Michelle Dawson:

The article looks into the long-held belief that autism and retardation are tied together and concludes that this just isn’t true — rather, that people with autism have been incorrectly classed as retarded for generations.

Yes.

It’s very obvious to me why people would think my son is mentally retarded; his academic performance and testing reveal this. But anyone who’s spent any time with Charlie knows that—-while he is very limited in his speech and while it often takes a long time (minutes, hours, days) for him to understand things that are said to him—-he doesn’t just look smart, but he is. Charlie’s very attuned to all that is said and done around him; he has an innate sense of direction and a strong memory. He needs a lot of help to navigate the world, whether looking both ways for cars or listening for his name to be called; he’ll very likely always need a lot of supports. He’s neither a genius nor a savant.

And he’s been smart enough to teach me that there’s a whole other way of being and understanding and processing the world—something I was more than ignorant of before getting to know a boy named Charlie.

Go here to read Wired’s article, The Truth About Autism: Scientists Reconsider What They Think They Know. The article closely profiles Amanda Baggs—-who notes that “‘I don’t fit the stereotype of autism. But who does?’”— and Michelle Dawson—-who says “‘There’s such a variety of human behavior. Why is my kind wrong?”‘.

And some words by Mike Merzenich, a professor of neuroscience at UC San Francisco:

Mike Merzenich…….says the notion that 75 percent of autistic people are mentally retarded is “incredibly wrong and destructive.” He has worked with a number of autistic children, many of whom are nonverbal and would have been plunked into the low-functioning category. “We label them as retarded because they can’t express what they know,” and then, as they grow older, we accept that they “can’t do much beyond sit in the back of a warehouse somewhere and stuff letters in envelopes.”

And I know one boy who struggles to talk and to read and to answer the question “who many crackers?” after he’s just counted out what’s on his plate: He’s a boy who, too, has been learning the A and D strings on the cello, and who—pointing out the window and calling out “this way, this way”—shows he knows his way up and down New Jersey highways. People might call him retarded and he has a lot of challenges and impairments, and a lot more smarts than you or I can tell.

ABC’s Nightline is airing a special on girls with autism tonight, on ABC News World News with Charles Gibson at 6:30pm (ET) and on Nightline, Wednesday, January 23, 2008 at 11:35pm (ET/PT). Aspie Dad posts a summary:  

…in a surprising twist, correspondent John Donvan and producer Caren Zucker talk to several researchers and psychologists who believe there are actually more girls with autism in the U.S. than diagnosed. Not only may there be many under-diagnosed girls, according to these experts, but some girls with autism may be assigned some other diagnosis. In fact these girls are often being under-diagnosed or diagnosed with something else. The researchers believe that many of the symptoms are being missed, or that they are just more subtle in girls. Nightline takes an in-depth look at how girls and boys are brought up culturally, and how these differences could contribute to a misdiagnosis in girls, resulting in the harsh reality that we just don’t know how many cases of girls with autism really exist.

While it’s been awhile since there was a girl in Charlie’s autism classroom, the more I have learned about autism, the more I have realized how many past and current women I know are very likely on the autism spectrum. There are friends from grad school (some of whom did not get their degrees and seemed more than loathe to leave the security of being in school; some of whom fretted over their inability to finish the requirements for their degrees and hung around, or who struggled at job interviews and moved from one temporary position to the next). There’s the girl from my childhood who refused to wear wool sweaters and to talk in class, who used a video dating service and was always dissatisfied with her job until, after getting downsized and going back to school to become a technical writer, found work she excelled at and that she liked.

And I’m sure there are many more.

Go here to read ABC’s report on autism in girls.