I read about plans for a new preschool for autistic children (in Brownsville, Texas, which—one upon a long while ago—-I briefly visited). An occupational therapist is hoping to start the school, which sounds as if it’ll have some emphasis on sensory sensitivities. I read about a new book on understanding autism written by a written by a 13-year-old whose best friend has a younger autistic brother. I think back ten years ago, to the winter of 1998.

That December was the first time I didn’t make it home for Christmas in California since I went to college back east in 1986. Charlie had had a number of ear infections and colds and the like throughout September of 1998 and, with his latest raging infection, the pediatrician told us we couldn’t take him on an airplane for the holidays. Charlie wouldn’t, we were told, be able to stand the pressure on his inner ears—-so Jim and Charlie and I celebrated Christmas of 1998 at the Rio Grande in St. Paul.

We did make it out to California to see my relatives after Charlie’s ears had cleared up, but all was uneasiness. It was becoming more and more apparent that it wasn’t just because of all those ear infections that Charlie was not talking and kept so much to himself in his daycare room. The image that is fixed in my head from that trip is of a very small Charlie standing between the couch in my parents’ study and the coffee table. My parents had given him a V-tech toy laptop. We turned it on for Charlie and he stared in the direction of the screen, while cheerful recorded voices said “press enter! count how many squares.” And Charlie just stood there.

Charlie was diagnosed with autism a few months later in 1999. And I still so often feel that twinge. What if there had been X program when he was just diagnosed; how much might it have helped him? What if we’d been able to move immediately from St. Paul back to New Jersey, what might that have meant?

And then I recall the conversation I had a few months ago with another mother of an autistic son. She is Lila Howard and is 84 years old, and still the primary caregiver for her son, who’s now in his 50s. She noted that we parents today have it “served up on a silver platter.” She was exceedingly glad about this, and her words gave me a wake-up. How many therapies, programs, services has she learned about over the years, and thought about as helpful to her son? How many more will she hear about still—how many more will I?

Now stop right there, I say to myself. There’ll always be “some new thing you’ve got to try” (one hears this all the time, as it is). There’ll always be some fabulous new remedy, or treatment protocol, or super-duper guru therapist. There’ll always be some new formula for hope in a jar.

Or rather, as I think of it—-even over the past two days when Charlie, far away from his usual routine, his usual order, here in California for Christmas, has seem unmoored and hyper-anxious, and trying so deeply hard to keep it together, and not able to at all, at times—-you just have to keep hoping.

And not the least because I want Charlie to know that we always, always believe in him, and that every day we spend with him is the best present there can be, this Christmas and for every Christmas to come.

So what is autism?

Chances are, if you’re reading this, you know, and are quite prepared to explain at the drop of the hat “what autism is.”

But what if you’re asked:

Why is there this separate term, “PDD-NOS”?

What is child disintegrative disorder and what does that have to do with autism, plain and simple? (as if there is such a “plain and simple autism”)

If a child has Fragile X, that means they don’t have autism……right….no….which?

Does “high-functioning autism” mean “Asperger’s Syndrome” only?

What’s the connection between autism and ADHD? Can you have both?

Can where you are and what culture a child is raised in influence diagnosis?

Is autism necessarily a life-long diagnosis?

These are just some of the questions and topics posed in a November report from the DSM-V Neurodevelopmental Disorders Work Group, written by Susan Swedo. The report is available via the website of the America Psychatric Association; more about the “future manual” of the DSM-V can be read here and go to Unstrange.com for an overview of how the diagnostic criteria for autism have changed through the years.

I gave a talk about autism to the Sociology Club at my college yesterday; one topic I discussed was how official definitions and our understanding of autism have changed over the years (however aware we are of this or not). I talked about theories of what causes autism; of the concept of an autism “spectrum”; about the need for including autistic individuals in schools and communities and not shutting them away in institutions; about my own experience taking care of my son and our search for the right school for him; about a family in China’s search for an education and therapy for their son as depicted in the film Children of the Stars and how is autism diagnosed in other countries?.

I only had a lunch period (not even 50 minutes; everyone had to run off so as not to be late for their 1pm class) and I felt as if I were putting out a lot of information, without really connecting it. In retrospect—especially as I reviewed the questions still being considered about autism spectrum disorders by the Neurodevelopmental Disorders (ND) workgroup—I started to think that maybe that’s just part of what happens when one tries to define and categorize “what” my son has and what he is; to find abstractions and generalizations for the specifics of one child I spend my days with.

The DSM revisions matter as they’ll have an impact on the services and therapies a child might “qualify” to have, based on what particular diagnosis a child is given. Even as we finesse the criteria and hone our understanding, and our categorization of “what” constitutes a diagnosis or not, will we lose the sense of some kind of common ground provided by the concept of an “autism spectrum”—or is this ground not so common as it might appear to be?

h/t to j/m

Maybe you’ve heard about 9-year-old Lin Hao—-a survivor of the Sichuan earthquake who dug himself out of the rubble and then went back and got two of his classmates out—who appeared in the super-spectacular Opening Ceremony of the Oympics and about whom, as Grace Ibay at Kids Health Notes, writes, Chinese bloggers are talking about:

Not by accident, the tiny flag that Lin Hao is waving is upside down. It’s an international nautical distress signal. It’s a cry for help. And someone thought of sending that message out at the Opening Ceremony of the Beijing Olympics.

Just an accident, maybe not quite an incident?

What if cars bearing puzzle magnets chose to turn them upside down to indicate distress; a particularly bad day?

We don’t, by the way, have any sort of puzzle magnet on our car anymore, but we do have a decal for COSAC, which is New Jersey’s largest autism organization and whose symbol is a tree which I like, as it makes me think of growth and growing things, and growing boys.

And the decal’s right-side up.

Today’s Scientific American reviews the new study about autism genes in 88 Middle Eastern families and emphasizes that the genes found are “linked to a heightened risk of autism” and, too, that these genes are crucial to a child’s ability to learn.” Noting that marrying second and third, and even first, cousins is not unusual in the Middle East, Scientific American points out that studying such families enables researchers to

track recessive genetic traits (caused by mutations that only affect individuals with two copies of the flawed genes). Such traits occur far more frequently in inbred families than in others.

Six mutations were found in the form of deletions, and all of these genes (which had not been previously linked to autism) play a role in “creating and strengthening synapses,” the connections between neurons:

Normally, when nerve cells (neurons) activate in response to an environmental factor (such as processing a new face or a new sound), synapses between two active cells change to provide stronger connections so the cells can pass on information more efficiently. As the brain develops, new connections are continuously formed among nerve cells, reinforced and, in some instances, broken as the brain starts to mature and divvy up its different functions to specific groups of neurons.

According to the findings, “All of the relevant mutations could disrupt the formation of vital neural connections during a critical period when experience is shaping the brain,” says Thomas Insel, director of the National Institute for Mental Health (NIMH) in Bethesda, Md. To wit, most children are diagnosed with autism between the ages of one and three years of age.

Walsh says the team believes these deletions—which in most cases found here only remove some, but not all, of the DNA that makes up a gene—may mean that the genes can regain some of their normal function. In fact, some of these genes may just be switched off. “This presents the possibility that in some kids we could get the gene going again without necessarily having to put it back in the brain,” he says.

Jim Sutcliffe, a molecular physiologist at Vanderbilt University in Nashville, Tenn., in a Science editorial notes that the majority of autism research is geared toward prenatal development, even though the brain continues to develop well after a child is born. “Experience and environmental input play an important role in subsequent development,” he says. He calls the notion that learning in early life is disrupted by these autism genes “an intriguing proposal,” but says that further research is needed to validate it.my emphases

Dan Geschwind, a neurologist at the University of California, Los Angeles, also notes that in order to study the hypothesis that autism genes affect synapse function, at least 20 to 30 other genes that have been implicated in autism need to be tested.

The new study, then, not only points towards why early intervention in the form of “enriched environments through repeated activities” might help autistic children to “train the neurons to make up for their lost function.” Perhaps it also suggests why a child might seem to be developing “normally” and then present with symptoms of autism, as the child’s brain development is somehow disrupted, and precisely at a time when children are expected to start talking and showing other signs of developmental maturity.

But about that repetitive learning.

“Repetitive learning” invokes images of rote learning and children-become-robotic in their responses after, for instance, too much behavioral therapy or “training.” This is a valid critique of ABA teaching and (having been studying ABA for the past nine years, since Charlie started in a home ABA program in September of 1999) I’d also extend it to the teaching, curricular choices, and overall learning style that can happen in an ABA program. Charlie has not done well in ABA programs in which he sat at his desk, did ten rounds of something (often getting the first wrong), and was handed a toy or told (mechanically) “good job!”; in which what he was learning and the methods used were said to be appropriate for him “because they worked for X other student.” ABA has helped Charlie when teachers have shut the textbook and sat down and gotten to know him, learned his quirks and dislikes, and grinned at his sense of humor.

When I teach—-I teach Latin and ancient Greek to college students—-I tend to emphasize repetitive learning myself. There’s no way around it: Students have to learn the endings of declensions of nouns and conjugations of words, grammar rules (and the exceptions), and vocabulary, vocabulary, vocabulary. And you can drill these into students in a boring and dry way, or you can make sure you have five colors of dry erase marker and be prepared to dance around the room, as needed, and to lead everyone singing Latin grammar—-hic, haec, hoc…..yes, I have done it. Music helps the memory.

Indeed, I’ve become an unofficial music teacher for Charlie. Once I sat with him, the logbook nearby, and did ABA drills; I retired from that when he was 5 and thought I’d be “just mom.” But then he started taking piano lessons with a great teacher with an ABA background, and then his teacher went on a hiatus, and then I decided to have Charlie learn cello and have been piecing together a sort of music book. Repetition has been key in Charlie’s learning music, to play two instruments and to learn to read music—in treble and bass clefs—as he plays, too: Practice makes perfect (or getting there) when playing the piano, as you train mind and fingers how to move over the keys, according to what the notes on the page say.

I know this from years of practicing piano and viola, playing scales and Hanon exercises, working my way through books of sonatas and minuets and preludes and fugues: There’s a virtue in doing something over and over. Often I’d find I’d memorized a piece just because I had played it so much. Repeating playing of the same musical piece trains the fingers where to move until it’s second nature. All the repetitive learning Charlie has done has helped to train his mind to make those connections, to pick up at 11 what he did not when he was 3 and 5 and 7 (he’s now lovely full sentences all on his own).

Another new study suggests that music played by a human being elicits a stronger emotional response from a listener, than when a computer plays it, and especially during chord changes—during transitional moments. Real live musicians are able to be aware of the emotional impact of their performing and to make adjustments, and especially when changes in the music occurs. The ear has it here, it seems, over the software and the silicon chip.

This was why Charlie learned so much from his piano teacher, a musician himself, and why I’ve felt very sad when I learned the teacher has moved elsewhere. Suddenly it is up to me to make sure that Charlie keeps playing; that his musical education continues. We have not been practicing as much, in part because there is now another instrument to practice and because, without the goal of a lesson every Sunday, one gets a little less directed. We used to practice piano almost every day and, without the regular, repeated practices, Charlie’s playing is less precise and he has to pause and find a key that he once struck automatically. But once he gets started, something “kicks in”—the synapses start forming. We started a new piece (”Runaway Rabbit”) yesterday.

When Charlie was diagnosed with autism, I never thought he would — as I had —play the piano, let alone the cello. Told that “individuals with autism live a full lifespan,” I shrunk at the thought of Charlie filling those years watching TV shows he neither understood nor cared about, or just sitting in a chair, his mind full of thoughts, and nothing happening. I can’t quite express my joy when he learned to play piano and when I could see how much he liked it; he gets the biggest grin, too, when playing cello (and he is starting to learn to use his left hand hand to hold down a string to play a different note). And I wonder: Had Charlie (a very musical boy) not received those early years of intensive, individualized, loving teaching, would he have been able (at the age of 11) to play songs like “Merrily” and “Blue Danube Waltz”; to sit at the piano at all? To be able to benefit from the emotional richness—the connections—-that music provides?

Autism is a global phenomenon: The Global Autism Project was started five years ago by Molly Ola Pinney of Dublin (NH), after she moved to Ghana to continue caring for a Ghanaian boy she’d met in Seattle while on assignment with the AmeriCorps. According to today’s Sentinel-Source:

“There were only 30 pediatricians and only one was diagnosing autism,” Pinney said. “The others believed the autistic were possessed. … Within months of coming to Ghana, I was being sought out by people with autistic family members. They said they were alone, that they needed help but didn’t know where to find it.”

After launching the Global Autism Project, Pinney partnered with Serway Quaynor, a Ghanaian who’d been teaching her autistic adult son at home because he had nowhere else to go.

In 1998, Quaynor founded the Autism Awareness Care & Training Centre, which filled in a huge gap in Ghana by providing training and educational services to help children with autism function in society.

I met Pinney a couple of years ago (we had both been asked to speak on a panel about autism following a drama festival on neurodiversity). Her Global Autism Project is an example of how, when it comes to assisting autistic individuals, one person’s efforts can make a big difference. We’ve found this out again and again through the many, many teachers, therapists, college students, and others who have spent time with Charlie and who he never forgets.

The Sentinel-Source notes that Pinney was “recently featured in a promotional video for Autism Speaks, the nation’s top private funder for autism research” and an organization that seems to be seeking to, indeed, be a sort of global autism organization, in additional to a national one. You may have heard of the recent disagreement/brouhaha between Autism Speaks and AutismLink, a Pennsylvania autism organization, as noted in a press release:

AutismLink, the largest autism advocacy organization in the State of Pennsylvania, is standing with Governor Edward G. Rendell and Speaker of the House Dennis M. O’Brien in their denouncement of the Senate Autism Bill. The Bill, HB1150, is scheduled for vote today. (The bill passed.) The bill requires insurance companies to cover up to $36,000 of autism-related treatment for individuals less than 21 years old, but was gutted of all useful language by the Senate’s Banking and Insurance Committee, headed byIndiana Senator Don White, a former insurance broker.

“This bill was carefully crafted to end insurance discrimination of children with autism in Pennsylvania,” said Cindy Waeltermann, President of AutismLink and parent of two children with autism. “Those who carefully crafted the bill understand the system inPennsylvania. Although the bill has been endorsed by Autism Speaks,Pennsylvania families of children with autism by and large reject the bill.”

“Make no mistake,” said AutismLink Executive Director and parent of a child with autism, Rick Bryant, “The Autism Speaks team working on this bill is comprised of individuals from New York, California and Maryland and they are completely ignoring the advice and information given to them from Pennsylvania advocates and/or clinicians.”

This particular disagreement points to something that might be noted about autism advocacy and organizations. There’s mission statements and goals, but—for me—autism is, when you get down to it, local. It’s about one person knocking on our door and maintaining the same compassion and composure to teach Charlie to build with legos or put on his socks. It’s about the clerk in the store who says “he sure likes his sushi” and smiles at Charlie, as I tried to pack too many groceries into one bag and hang onto my wallet. It’s about the email his teacher sent me exclaiming over the great time he had at a field trip to a beading shop: Charlie not only made his creation with “speed and accuracy” but “blew everyone away” with its beauty.

Yes, autism is all around the globe and many have needs everywhere, and all the more reason to listen as carefully as one can to what the locals are saying.

I suppose it’s not surprising that the story of an autistic toddler and his mother being removed from an airplane got so much attention last week. Airplane is travel is neither so friendly nor so fun (or affordable) for anyone these days. The story of Jarret Farrell really home with me because, a couple of days before, Charlie and I had had our own difficult traveling moment.

There’s no plans of Charlie having to fly anywhere till December when we go to visit my family in California (already bought the tickets—-I like to fly on red eyes or very early with Charlie so he’s very likely to sleep, and non-stop is a sine qua non). So our trips will be made possible courtesy of the usual, though with gas here in NJ hovering just under $4/gallon (I know it could be worse; my parents are hanging on to Honda they’ve had before Jim and I got married because it gets really really good gas mileage), we’ve been less inclined to hop in the black car for random driving outings. But there are trains and subways since we’re in the NY metropolitan area and, of course, bikes.

I wanted to thank everyone who left good wishes to Jim about his back injury. He had an MRI on Thursday morning and we’re awaiting another visit with the doctor, and I’ve been reading about back pain, surgery, long-term treatment. It’s all been a reminder to Jim and me that, while Charlie is our number one focus, taking care of our not-getting-younger selves is part of what’s necessary, if too often overlooked. Just this past week I finally took myself in for some medical appointments that are routine but necessary: How can we be caretakers if we don’t take care of ourselves, too?

• Nutraceuticals for Autism?
  A company announces plans to develop a line of “nutraceuticals” specifically for autistic children and children with “related neurodevelopmental challenges”—-no one’s objecting to giving kids vitamins (and some helpful comments about vitamins and given them), though not sure if these “nutraceuticals” are the ones needed.
• Rapamycin Reverses Learning and Memory Deficits in Mice
  Researches give mice rapamycin, a drug that has been approved by the FDA to fight tissue rejection following organ transplants, and see their learning and memory deficits reversed.
• Autism Genes: Approaching a New Neurobiology
  Advances in DNA technology and in the understanding of autism have enabled scientists to use genotype and phenotype information together for find out more about autism; more here.
• You Know You’re a Parent When….
  —you’re driving home fast as you can in the right lane because your exit is coming up and there’s a semi tailing you and from the backseat comes a loud hacking sound…….
• Autistic student jumps in front of tram after cancelled school trip
  17-year-old Jonathon Howarth was so disappointed about a cancelled school trip that he walked out of his college and jumped in front of a tram in Manchester city centre.
• The Very Unfriendly Skies
  2 year old Jarret Farrell and his mother, Janice Farrell, are removed from an American Eagle flight at the Raleigh-Durham (NC) airport..
• On Being Different or, Kung Fu Panda!
  About a certain different-looking-and-being, disruptive-behaving, smelling-funny, yowly individual: Po!
• Disability Dolls
  Are disability dolls a “’blessing or a sick joke’“?
• Dysregulation of MicroRNAs and Autism
  A new study suggests that microRNAs (miRNAs)——a type of RNA (ribonucleic action), which is involved in protein synthesis—–may play a role in the development of autism.
• Children of the Stars: Autism in China
  A new documentary, Children of the Stars, tells the story of the family of Feng Jia Wei, who is 5 years old and autistic and lives in China.

I’ve been learning a lot from a recent discussion here about autism genetics. My own interest in the topic arises from what it reveals about how Charlie is linked to us, to our family. While neither Jim’s nor my family has had a child with an autism diagnosis prior to Charlie, we’ve both noted autistic traits in relatives in both of our families.

I’m Chinese American on both sides. I’m third-generation; both sets of grandparents emigrated to the US from Toysan County (Toysan is the Cantonese pronunciation of Taishan, the county’s name in Mandarin). All but a few of my very distant relatives are now in the US. Jim is Irish American by way of Hudson County in New Jersey and Brooklyn: Charlie’s Hapa. Nonetheless, I sometimes wonder what it would have been like for him to have been born in China. What it is like to be autistic in China and to be a family raising an autistic child in China?

There’s a new documentary out called Children of the Stars which tells the story of the family of Feng Jia Wei, who is 5 years old and autistic. He and his parents, Feng Lei and Hao Yue Chun, travel across China to attend an 11-week-course in Applied Behavior Analysis (ABA) at the Stars and Rain school to help him:

In a small village on the outskirts of Beijing, there is a unique little school that runs an 11-week course specifically for autistic families. This school relies entirely on charitable donations and has very rudimentary facilities. Its name is “Stars and Rain”.

The film tells the story of the Feng Jiawei family who, after being on a waiting list for nearly 2 years, finally make the long journey to “Stars and Rain” to participate in the course. They desperately hope the school will teach them how to understand and cope with their autistic 5-year-old son. Their boy cannot speak and is often violent – especially towards his mother. The local schools will not take him and the family feel ostracized from society.

As there is limited community help for autistic people in China and no social security system, the parents are extremely concerned about their future prospects as a family. They know that if they cannot get their son to integrate into society and attend a standard school, then life will be very bleak. Their fear is that their son will never be able to get meaningful employment or support himself.

Should that become a reality, they have already decided on a drastic and tragic plan - to commit a family suicide. They know that when they are too old to work and cannot provide for their son, he will have to beg. They feel he will not survive on the street so they want to die peacefully together by taking a lethal poison. This plan is not uncommon among autistic families in China.

Jim and I have traveled far to find the best education for Charlie, but not as far as Feng Jia Wei’s family, and not just for an 11 week course, but for continued years of school and therapies. I’ve been watching the trailer over and over: A little boy is shown not holding out his hands to catch a ball which bounces off his chest (this was exactly our experience teaching Charlie to catch a ball; he had to learned to track the ball and time when to hold up his hands). Feng Lei asks his son:

Wo shi shei? [Who am I?]

And Feng Jia Wei says:

Baba. [Daddy.]

Huge smile from Baba, big hug, heartmelt.

Children of the Stars also features Tian Hui Ping, who founded the school “Stars and Rain” in 1993 and who is the mother of an autistic child, and Feng Yun Hong, Feng Jia Wei’s teacher. The film was directed by Rob Aspey and produced by Alexander Haase; you can contact them and also here’s more about how you can help.

And, the June 26th Patriot Ledger profiles The Five Project, a Massachusetts-based organization that seeks to fund workshops about autism for parents and caregivers as well as teachers in Beijing and Nanjing; to form support groups for families of people with autism and another for young adults with mental illness and their families; and (hopefully) to send American experts about autism to China and to make it possible for Chinese educators to come to the US to receive training in teaching autistic children.

Being different; being disruptive; looking different; smelling funny (according to those who think they don’t); yowling………

What do these apply to?

Are these perhaps a few reasons why a 2 year old and his mother were kicked off an American Eagle plane, or a 13-year-old’s parents had a restraining order filed against them, or a 5 year old was voted out of his class?

Well yes, but actually, nope.

The different-looking-and-being, disruptive-behaving, smelling-funny, yowly individual I am referring to is……………..Po aka Kung Fu Panda.

Charlie and I saw the movie Kung Fu Panda Tuesday evening. We haven’t seen a movie in a while and we had some free time on Tuesday and Charlie said “yes, movie!” when I asked him. I knew the movie’d been out for awhile so it wouldn’t be crowded (it wasn’t); we came about 15 minutes after the actual movie start time (in the past, Charlie has watched all the trailers and declared it time to go). We sat in the back row, with popcorn and a soda.

We had the funnest time.

Charlie’s eyes were (honest!) riveted to the screen, and even after he’d handed me the empty popcorn and soda containers. He wasn’t 100% quiet (a couple times, he imitated the animal characters, especially when Tay Long, the bad guy snow leopard (?), grunted some things and roly-poly Po responded cheerily and cheekily). He asked twice for the bathroom—the first time, he couldn’t get up because he was too engrossed in the movie; second time was right near the big fight finale, and we made it back just in time…….. There were a couple of much younger kids and mothers in front of us and some standing up, passing around of popcorn, eyes closed at the scary parts (that mountain prison, yikes!, and the rope bridge…….).

We left the theater in a thoroughly happy mood, with Charlie talking about eating noodles, which Po the panda’s father (a goose) doles out in a restaurant. As you know, we did not get noodles and I spent Tuesday night and Wednesday morning (when there was sunshine) scrubbing out the back and part of the front of the black car, whose windows had been left open overnight. Charlie took the day off from school—-maybe the popcorn (which he’s eaten before), or a stomach thing making its way ’round his classroom, or the pool water added up to Major Stomach Distress. He talked about “noodles” throughout the day and “PoPo” (that’s what he calls my mom; it’s Cantonese for “maternal grandmother”). And did he catch those occasional references to “all of China” and note the chopsticks and the dumplings the kung fu master Shi Fu uses to train (motivate) Po?

Charlie was really listening and something about that panda, with a touch of ADD and trying so hard to learn kung fu like the other animals and blundering and breaking holes in the paper walls….. I couldn’t help but think of Charlie’s whole-hearted attempts to learn and do his best, and how so often it just seems he’s been prejudged as Not Right, Too Different, and Just Can’t Do It. Po prevails beyond anyone’s (including his own) wildest expectations in the end; at one moment, he’s to gain a certain knowledge about the secret ingredient to more or less everything and he discovers that it’s……..

………………

………………

………………….a lot more and a lot less than you might think, but just right.

How is it that we can be so accepting of “difference” on the silver screen with DreamWorks animation, but when it comes to real life and real kids with real disabilities, it’s not easy? Though that doesn’t mean we can’t have a happy ending, or something close to it.

And some homemade won ton on the side.

(We know what the secret ingredient is.)

That’s the question I keep seeming to run into among parents: Where to live to get the best possible services for an autistic child? Over at About.com, Lisa Jo Rudy asks where should families move for better autism resources and notes that “in the United States, autism resources vary radically from state to state, county to county, and even town to town.” (She notes that she has heard “good things” about New Jersey (where we live now; my husband is a native); Minnesota (where Charlie was diagnosed); and North Carolina (where Charlie has yet to visit….). Today’s Atlanta Journal-Constitution also asks “where are the best schools for autism around Atlanta.”

And needless to say the search for a school to educate autistic children is hardly limited to the US. While I’ve heard of parents from around the world moving to the US for schools, more autism schools are being opened around the world. Here are some in Asia: In China, Ma Chen, who has an autistic daughter, has started three autism schools in China. In Thailand on Koh Samui, Emma Dyas is hoping to start a school for children with autism and other educational needs; as she wrote here earlier:

There are currently no educational facilities for children with autism on Samui and to send their children to schools elsewhere is simply too expensive for most Thai families. With this in mind we are trying to assess the possibility of changing this. We would like to set up a non-profit school for children with autism and other special educational needs on Samui at no, or minimal cost to the parents of these children. This idea is in it’s most formative stages. So far we have a suitable site ( our current location that we will be moving from next year), however we will need the following; corporate sponsorship to cover the costs of running and appropriately outfitting the school and Teachers and other experienced staff. Any information on organizations that could help us, or any individuals who have any ideas, information, would be interested in working with us or have experience to share would be most gratefully received.

There are autism schools elsewhere in Asia, Open Door in New Delhi, founded by Merry Barua, and the Milal School in Seoul, South Korea.

We took the chance and moved from the Midwest back to New Jersey after hearing about the state’s private autism schools. Charlie was not able to get into one of these, and we’ve moved a number of times to find the public school district with the right program and services for him, and hope that our current school district will be the one to see Charlie through all the way into adulthood. We’ve been fortunate that circumstances that we’ve had the resources to do this; I think that Charlie being an only child has made these moves easier (not that they’ve been easy!). And—keeping mind the current shortage of housing for disabled adults here in New Jersey—I’m not at all sure where Charlie might end up living as an adult.

Where where where……

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.