Jim and I both noticed her. She was a few inches shorter than Charlie, shiny black hair in a page boy cut. She had a turquoise blouse and pants of a different shade of blue, and so beautiful, something about her big dark eyes and her perfect features. She moved quickly into the room, not so much running as rushing in with deep reserves of energy. She held her arms at a stiff angle with the elbows bent briefly, and then, a sound, a squawk. When I looked in her direction again, she was slapping her head.

We were in the lower level of a church in central Jersey, at a session for a ministry for special needs children. We got there over a half-hour before the ministry started and everyone was lining up for lunch when we entered. Charlie hunched his head down and his shoulders up and peeled off the nametag I’d just placed on his shirt. There was sushi and he wanted a lot of that and some rice and pink slices of pickled ginger. After eating, I stood behind Charlie as two young men demonstrated the steps for a line dance; Charlie swayed from side to side, picking up his feet in rhythm, laughing and echoing some of the instructions: “Now straddle! Tap the right foot!” After rehearsing a few times, everyone was supposed to walk in a circle while doing the steps. Charlie walked a few steps and, finding himself under the loudspeaker, went to pace (with a smile) by the food. A kindly volunteer tried to grab his hand and pull him back into the circle and Charlie briefly acceded, then went back (grinning) to his pacing and occasionally took a step outside the door.

Two women held the girl’s arms and were sort of walking-pulling her in the circle. Sometimes she made the same high-pitched noises, or ran back and forth with limbs full of energy, or aimed her hands at her head again. Her mother was pushing a stroller with a baby and, when I asked, I learned that the girl’s father had gone to his home country and taken another of the girl’s siblings.

I drifted by Jim who’d noted the girl too and said, “Of all the kids here, she’s like Charlie.” Jim noted her restless energy and at different times we both found ourselves beside her and said hello. She reached for my hand and held it, her grip strong.

Charlie asked to go to the car several times, and shrugged and paced or looked around when we told him we’d be staying for a few more minutes. I was told that the girl attends a county program of the sort we’d wanted not to place Charlie in. And Jim and I both agreed, there was something about her, deeply and richly compelling, that we hope to see her again—-a girl with challenges so like Charlie’s, and (also like Charlie) a child whom one hopes to get to know a lot better.

Reading another account of an autistic child, 11-year-old Alex Irvin, who found his way back to trailhead after three nights alone in the woods, I think back to the numerous stories about autistic children lost, wandering off, left behind that have been circulating this summer and conclude, I know why an autism consultant to Charlie’s school district talked about teaching kids to know when they are lost, and to know what to do (and what not to).

You’ve got to know you’re lost first, so you can look for help.

I got a new phone yesterday. I’d been hesitant to this for a long time. Even though I knew I’d be able to have my same phone number ported over to the new phone, that little voice that says “well, you never know, could be……” kept running an endless loop in my head.

Charlie, you see, has memorized my cell phone number and recites it perfectly. When we’re out in places like New York city, we’ve been placing a card with his name, mention of his having autism, and my cell number on his person. But if he knows the number, he can always have it with him.

Meaning that, I always need to have the cell phone with me, and that phone always has to have the same number. Sure Charlie could memorize a new number, but who knows which number he might say at a moment of confusion, and to a stranger? I still remember the phone number for the house we lived in when I was 4 - 8 years old; it’s the first number I ever had to memorize and it’s still there.

In yesterday’s Arizona Star, Johanna Eubanks—whose 22-year-old Dave is autistic—notes that many and any public places are potential “minefields” for autistic children. She cites a number of recent stories of autistic children and adults wandering off and being lost, sometimes for days, and also many recent reports of autistic children and adults getting very upset in public places (a church, an airplane) and of the bafflement of bystanders and (in some cases) police and other first responders about what to do—-and also an additional concern: An autistic person (this would include my son, I suspect) may not consider her of himself lost.

Almost every parent has a story of losing a child in a mall, department store, amusement park or some other public place where people are spread out over a large area. Most typical younger children who are lost cry, someone asks the child’s name and then an announcement goes out for Johnny’s mother to pick up her son at customer service or something similar.

But what happens when the child doesn’t speak? What happens when he won’t talk to a stranger, or he’s old enough that he doesn’t appear to be a lost child? Some children with autism are real wanderers and are quite content on their own even if they really shouldn’t be.

There have been a few stories in the news lately of missing people who have autism. They are harder to find. Some are afraid of the strangers who are looking for them and hide. Some simply don’t know they are missing. They aren’t afraid, so no one who sees them realizes something is amiss, unless of course the missing person looks too young to be out alone.

If police are called in when an adult autistic person—who looks “normal”—-is upset, they may think “think they are dealing with someone who is just being beligerant [sic] or is high on drugs” and use excessive force and restraints and even be aggressive. An autistic man named Kevin Colindres went into a coma after police forcefully subdued—in essence hogtied—him; very sadly, he passed away after falling onto a coma. This is something I’ve thought about a lot more as my son Charlie has grown taller and bigger. If he’s anxious in a public place, he might, one time, holler some wordless sounds and when people see the source is not a little kid, they get anxious.

People seem to judge how they respond based on how I respond and if I’m not showing signs of distress, they usually just go on with their business. Sometimes, I’ve started to say to Charlie, “It’s okay to be anxious, we’ve never been here before and you’re doing fine……” I invoke the keep calm and carry on mantra and we keep walking, together. And as one hand checks my bag just to be sure, the phone is there, both eyes are Charlie.

Now we’ve got the New York Times weighing in on radio host Michael Savage’s savage language about “bratty” autistic kids. As About.com notes, Savage is “successfully sucking time, money and energy” from the autism community (and sucking in ratings, I would think). All I can say again is, ’nuff said!

And, we have found the actual parasite.

It seems no wonder that right wing talker Michael Savage’s last name is, well, “Savage” after reading what he said about autism on his radio show. I’ll list the words he uses to refer to autism:

moron, putz, idiot, fool, dummy, a girl, losers, beaten men

More of Savage’s savagery is quoted on Left Brain/Right Brain.

If Savage’s intent was to shock, using such words about autistic children is a no-brainer way to do it and perhaps ratings will spike as rightfully indignant autistic self-advocates and parents of autistic children respond. What troubles me in particular is Savage’s contention that autistic children are just brats behaving badly, and brats parented by laissez-faire “let it be” types of parents, especially in the wake of more than a few stories of autistic children who have been removed from a church, a kindergarten classroom, an airplane, and a restaurant. In each case, the children’s behavior was cited as “dangerous” to “public safety” and just downright “unacceptable.”

Funny but behavior like Savage’s–his unacceptable pronouncements about autism—gets air-time. Perhaps we have found the actual parasite……

Autism and Faith: A Journey into Community is a new resource for clergy, religious educators, and families of autistic children to develop “inclusive spiritual supports” for autistic individuals in religious settings. The 52-page guide was developed by the Autism and Faith Task Force of COSAC, New Jersey’s main autism organization, and the Elizabeth M. Boggs Center on Developmental Disabilities, which is in the Department of Pediatrics at UMDNJ-Robert Wood Johnson Medical School. More about the guide:

The Task Force worked for more than two years collecting stories and experiences from families, best practices and strategies from clergy and human service professionals, and resources from around the country.

The guide features more than fifteen short articles written by clergy, parents, professional experts on autism, religious educators and people with autism, illustrated by numerous sidebar stories and examples from families who shared their experiences, both positive and negative, with their own faith communities in New Jersey. It is interfaith, including examples from Christian, Jewish, Hindu, and Muslim communities.

There’s also some first-person accounts by autistic individuals.

The guide was edited by Mary Beth Walsh, PhD, and Alice Walsh, MDiv (both of whom are parents of autistic children) and Bill Gaventa, MDiv. Mary Beth Walsh and Bill Gaventa also spoke at the 2006 conference on Autism and Advocacy at Fordham University that my husband, Jim Fisher, put together. (Video clips of the conference can be seen here and provide more insights into the work of “inclusive spiritual supports.”)

A number of the guide’s sections feature practical suggestions for including autistic children and adults in religious settings, such as seeking out a family-oriented service where a little noise is not uncommon; familiarize your child with the physical space of the sanctuary; use concrete language and visual aides when instructing a child; make a point of introducing yourself and your child to your religious leader before attending a service.

Jim and I contributed an essay to the guide, “Autism: Presence & Justice.” The essay is mostly Jim (he’s a cultural historian of religion) and much less of me. (As in, much, much less.) Here’s the last paragraph of the essay, which puts the issue of including autistic individuals in religious settings into a broader framework:

……the inequality of educational opportunities for persons with autism is not simply a matter of public policy, but social justice. This disparity closely mirrors inequalities of economic status, which in turn are often grounded in legacies of racial inequality and de facto residential segregation that relegates persons who are cognitively disabled and poor to substandard educational programs. Everyone in the autism community knows just how unequally distributed are these vital and indispensable educational services, from early intervention to classroom teaching to vocational training. These inequalities are further evident from delayed diagnoses to inadequate services that can lead to physical harm done to autistic persons or members of their families. The fundamental inequality of autism services—and the demeaning competitive scramble into which most families are driven—call for action grounded in moral and religious convictions on the dignity of all human persons.

The guide can be ordered via the Boggs Center (the first copy is free for residents of New Jersey); theDaniel Jordan Fiddle Foundation provided support for the project.